Marchese Family

It's Off to Stanford We Go!

2011-11-22T21:06:00.006-07:00

I've been having funny feelings about Grace lately- call me crazy, but we've gone too long without major cardiac concern. I've spoken about these concerns with family, friends, other heart parents, our cardiologist, cardiac nursing friends, etc. I was starting to feel less concerned, but there was something that just didn't sit right.

I'm glad I followed my gut. I decided to seek a 2nd cardiology appointment with another practice. I adore our current cardiologist- he's youthful, optimistic, upbeat, kind, great with words... this was not personal in any way. When it comes to my kids, I just want to be sure I'm doing my best to get them what they need, so off I went.

Grace's most recent ECHO showed that the right side of her heart continued to be enlarged- working harder to compensate for issues. On a scale, she was a 120, with 150 beginning the point of no return (CT surgery imminent). This number doesn't typically change quickly, but it shows that her heart function isn't perfect, and will require intervention in the near future (1-2 years). We knew this, we are okay with this. Grace also has a 12mm conduit (homograft)- this is one of the SMALLEST conduits made. She's had this in place since July 2009.... there are kids that are smaller than her with larger conduits, and they're looking at replacement in the next 2 years. Again, we knew this, we're okay with this, but we don't want to wait until "too late".

We decided months ago that we would be going out of state for Grace's next heart surgery- and Stanford seemed like the best fit. I had been in contact with their surgeon, and we were waiting until Grace was deemed "ready" to be presented (post-cath or MRI here in Phoenix).

Today was our 2nd opinion- a 4 hour appointment! Grace was a champ. We left with MUCH information... where to begin?!

Apparently, we are all born with outlying pulmonary arteries that continue to grow for the first 6 years of our lives. If we reach the 6th year point, essentially we deal with what we have. We can balloon or stent, but no more true "growth". In Grace's case, she has SUPER tiny outlying PA's. September of 2010, Grace had her right side ballooned, and left side stented, because her heart pressures were approaching a bad range- as her heart was pumping against a "traffic jam", per se. The procedure helped. Today, we were told we need to be pro-active and take advantage of the next 3 years in growing larger and more PA's, to continue reducing the overworking of the heart, keeping us in a safer zone, and giving her a better long-term prognosis. Makes sense, right? A cath procedure- minimally invasive with potential long-term benefits? Yes, please.

In Grace's last OHS, the surgeon discovered multiple collateral arteries, or MAPCAS. Because none of them were of substantial size, they were coiled and killed off, instead of harnessing them for greater good in a unifocalization procedure. I was concerned that Grace's body was generating more collateral arteries, and that if we didn't see someone (surgeon) with MAPCAS experience, we were doing a disservice. Fortunately, (GOOD NEWS!) MAPCAS are not a concern at this time-there are no notable collateral arteries. Yippee!

Lastly, and here is where it get's confusing.... we have and have had, a valve issue. Grace's homograft (the 12mm one) is essentially a synthetic pulmonary artery, as she was born without one. The conduit looks decent- minimal narrowing. It could probably go another year or two. Unfortunately, the valve within the PA (typical of TOF kiddos) will begin to leak, wear out and need to be replaced. When TOF kids are born with their PA intact, this can potentially be replaced (after the 1st initial placement done OH) in a cath procedure, using a melody valve.

What does this all mean? Essentially a cath in the next 90 days @ Stanford. The cath will determine what outlying PA's can be ballooned, stented, grown, etc.; and if her conduit is big enough to accept a melody valve. Stanford needs to decide whether they'll: 1. do nothing; 2. stent/balloon/grow; 3. place a melody valve & determine replacement date of conduit; 4. do replacement of valve & conduit, or set a later date to do so.

Basically, we're going to Stanford blind. We could end up being there for a minor cath, or her complete repair (2nd). In a way, this is good for me. I don't have the time to panic about the what-if's.

Faxes have been sent. 16 DVD's are being fed-exed. Stay tuned....

PS- Grace's 1st Make-a-Wish visit is coming! Day after her 3rd birthday!!!

Oh yes, and to cap my great day off? My hubby ran a red light tonight and T-boned someone, totaling his company car. Awesome...

Changes Ahead....

2011-06-08T21:37:00.002-07:00

Grace has been looking duskier and duskier as of late. I've tried to chalk it up to mommy worry, but now friends and family have been commenting on it. It was time to make the dreaded call to cardiology. Grace was seen last week by Dr. Shah. He agreed her color was a bit off, but he was most concerned about her behavior. Grace has always been a calm kiddo- but at 2 1/2 years old, she should be FAR more active and energetic than she is. Grace is the type of kiddo that's content to watch Dora (I don't think she can ever get enough of Dora!!), color, lay in bed with mama, or cuddle on the couch. Don't get me wrong, there are times where she's running with her brother- strangling him, hitting him, hugging him, chasing him; the calm times are greater than her energy spurts. Most recently, Dr. Shah thought we'd be able to get to age 5 without surgery, but my gut has been telling me differently- and I think my gut is right, sadly. Mark my words, people-it's the one time in life I would love NOT to be right! :)

Grace's O2 sats hovered around 94 (her norm is 99), and while crying dropped down to the low 80's. Not a HUGE concern, but with the other issues, it's enough of a concern. Her EKHO looked decent. There is definitely regurgitation- but without an MRI or more invasive procedure, it's impossible to know what percentage of regurgitation there is. The thought is, she's not as active or as pink as usual because the regurgitation may be at a more severe range than expected. I'm not sure that her pressures have stayed down either, but time will tell. Dr. Shah ordered an MRI with anesthesia. He had hoped to get it done within the month, but with the merger of the two hospitals, scheduling may not have been ideal.

Thankfully, we were able to get in pretty quickly. Grace will have her MRI on June 22nd at 10:30 am. We'll check in at 9, with nothing to eat or drink beyond 4 am. If there is something that can be potentially fixed in the Cath lab, they'll potentially take her there. Unfortunately, it doesn't appear to be a Cath fix.

The day of cardiology, we started talking surgery. I wasn't ready for it, but knowing my gut, I've kind of known all along- my gut tells me we'll be doing CT surgery within the next 6 months. After talking with the cardiac team, my family, and my God, we've decided to have surgery out of state. Dr. Shah supported our decision, and recommended that we make our hospital decision now- versus waiting until an emergent situation. He suggested Baylor, Stanford, Boston and CHOP as options, among others. Financially and emotionally, Stanford makes the most sense. We are originally from the Bay Area, and still have many friends and family that reside in that general outlying area. I'll be scared to be away from home- but comforted by the familiarity during the uncertain time.

To complicate my worries, we saw GI yesterday with mixed results. The GI asked if we had seen cardiology, as they're noticing a change in her color. UGH! Seriously?!? I explained that yes, we had, and gave them cardiology's plan. GI is a bit concerned that it may be time for cardiac surgery as well, as for the first time in over a year, Grace lost weight, despite the extra feeding therapy sessions. The thought is, if there is less positive blood flow (regurgitation), her gut would be the last organ to receive blood support- thus making it difficult for her. She hasn't been vomiting much, but it's increased above her normal range. Maybe it's because of this? Maybe not... Either way, we're bumping up her caloric intake primarily through tube feedings to give her a better buffer for weight loss due to either CT surgery, or admission to an inpatient feeding program (more to follow on that). Also, because of her daily aspirin dosage, the concern is that there is damage being done to her gut, that would only get worse during CT surgery. Grace will now be taking Omeperazole to soothe her gut lining. Not sure we'll see the outward benefits of this, but hopefully we'll avoid any internal gut bleeds post-op.

Prior to all this cardiac craziness, we had been admitted into Phoenix Children's outpatient intensive feeding program (we had been on a waitlist since she was 3 months!!). We were super hopeful about this being the answer to Grace's behavioral issues when eating. It was helpful, but not nearly enough. GI recommended looking into a behavioral inpatient program. Unfortunately, there is no such program in the state of Arizona. We discussed both Milwaukee Children's and John Hopkins (Kennedy Krieger). The cost of airfare is bound to kill us, but we'll make it work, even if I have to max-out credit cards. After communication with both programs, Kennedy Krieger seems to be the better option. Prior to the cardiac appointment, we scheduled an eval appointment for July 14th.

Fast-forward to now- WOW! So, there are a few ways this can go... 1. Grace will have her MRI and need surgery right away & we'll be sent to Stanford. 2. Grace will have her MRI and need surgery, but may be able to wait a few months. 3. Grace will have her MRI and not need surgery for a year. The big question for our family is- do we risk paying tons of money in airfare to get the eval @ Baltimore, only to have to postpone treatment for surgery, or worse, she succeeds treatment, then has surgery, and loses her skill. UGH! What to do, what to do?!? At this point we've decided to wait it out. We should have some cardiac answers at the end of this month, and we'll make the rest of the tough decisions at that point.

Gavin is doing AMAZING!!! He's been taking his budesonide slurry (mixed with 4 splendas)- he drinks 1/2 in the morning, and 1/2 in the evening- and it's been working!! His latest biopsy shows partial remission. He is clear in his upper esophagus and middle esophagus, but his lower esophagus still has numbers in the 60's. Our GI thinks that by adding Omeperazole we'll be able to combat any reflux that's occuring, and achieve full remission. He'll have another biopsy in 2-3 months, and we're hoping it will be our last for some time. Praying for remission!!

On a brighter note, he's eating EVERYTHING! Falafel, Pad-Thai, milk, applesauce, etc. You name it, he eats it. He gained an average of 12 grams a day- we were shooting for a goal of 8! That's my little overachieving man! He's still having his sensory melt-downs, but we're coming up with creative methods to combat the screamies. Our swim lessons with him are GOLD- he's a true fish! He's already swimming underwater and able to grab the wall, and climb out- all by himself!!

I feel bad for Gav during this time of chaos with his sister- I don't want him to feel my stress and tension, nor do I want him to feel less important. It's a trying time- and I'm finding myself unable to sleep at night, but needing a nap by 10am. I'm hopeful that I'm just in a funk and that I'll work my way through it.

We'll soon have TONS of family around- Felix's parents are moving here this week, and his sister her husband and daughter will be here next month. His brother and wife will be here this winter. I'm stoked to have the kid's relatives around and to have more family time! My mom has lived here for a while now, also Mimi (my other mother). My dad and family live in Wisconsin, but we'll be able to visit more often now that we have less places across the US to vacation.

I think that's it for now. I'm long winded... and tired, but grateful for my babies and content to start over again tomorrow.

As Grace now says, "I You Mama" for I love you- that is ALL I need to get by! XOXO

Tired of Playing Catch-Up... the Title of My New Book: Procrastination

2011-05-24T19:44:00.002-07:00

I am really bad at this. No really, I mean it. I'm REALLY bad at updating this. So many nights I spend thinking about what I could be updating and making sure I remember, or thinking about how I really should be posting about where we're at medically, but time manages to escape me. It's official- I am a procrastinator.

The kids are well- healthy and continuing therapies as normal. I get scared during these "coasting" times- I'm always anxious about when it will be "time" again for Grace's next OHS. Every day I scrutinize her lip color, nail color, etc. I hate to say it, but going to cardiology once every 6 months is far more anxiety inducing than every other month. Sad, but true.

Both kids are walking and running EVERYWHERE! They're literally into everything. Grace is talking up a storm, Gavin's speaking in spurts- it's going WAY too fast!

If nothing else, this post can be a journal entry for me to remember their "language".

We say: Grace says:

YESSSSS! Ssssaaawwwhhhh!

I'm ready I'm wettty

I'm hungry I num-num (while touching her nose) or I knee

Brother Boo-Boo

I love you TU-TU

I love you too TU

Bubbles Pop-Pop

I'm two I Two!

Private Parts Butt

Ketchup/Ranch I want Dip-Dip

She's adorable! I love her mmmmm's the most after she eats something really yummy. I also really like her aaaaah! after she drinks something refreshing.

I recently taught her the Gaga paw... Bad Romance came on in the car, and I thought it only appropriate to teach her how to "put her paws up" for Lady Gaga. She's really got it down!

Gavin is saying Bottle (BaBa), Water (WaWa), and Mama and Dada.

More updates to follow.... sometime this year (maybe).

My Life with Gavin....

2011-02-07T16:55:00.001-07:00

I want to explain to you why my child is
having such a rough time today…
What you are seeing when you look at my
child is not a child who is "out of control" but
rather a child who is "out of sync." My child
has Sensory Processing Disorder (SPD),
which is the inability of the brain to properly
and/or efficiently process and organize
sensory information. When my child's brain
receives information through any of his
senses - sight, smell, hearing, taste, touch,
vestibular or proprioception -- he doesn't
always know what to do with that information
and can become very disorganized,
overwhelmed, frightened and confused. You
can read more about SPD at
www.spdnetwork.org.
My child has good days and bad days. You
must have run into us on a bad day. I
apologize if we have made you uncomfortable
or if we have been disruptive. My child is
currently involved in many types of
interventions, working on these sensory
issues, so that he can feel normal like you
and so that when we go places, he feels safe
and comfortable in his own body. It is going
to be a long and difficult journey, but in the
meantime, please know that inside him is a
beautiful and magnificent little person
waiting, hoping and trying to emerge!
Think about how difficult my child's SPD was
for you today, then try to imagine how hard it is for him.
The next time you see us
out somewhere, please understand...

Inspired!

2011-01-27T21:35:00.016-07:00

Such a great evening tonight! After much debate, I managed to get out of the house and attend the Eller Family Heart Council meeting. What a group!! The families were all so friendly, so supportive, and so energized by one another. I left feeling part of a group, finally! Super excited to get more involved.

Today started with Gav's biopsy. Good news, so far. His furrowing (imagine tunnels running down his esophagus) has decreased, but the biopsy will tell us the real results. In a week or so, we'll know if he's in full "remission". If he's in remission, we can safely
assume his allergies are all food-triggered, and we can start introducing 1 new food at a time, with a biopsy between each addition. Sounds long and painful, and it will be, but at least our little big man can start eating something other than Elecare (*hopefully*)! Speaking of my little big man, he cracked me up yesterday trying on mommy's glasses! Check out these silly pictures!

Grace is doing well, she's a full-fledged toddler FOR SURE! We have days where she loves on her brother, giving him continual hugs and grabbing his bottle when he's upset, to days where she's running him over with her Little Tikes buggy, his motorized quad, or hitting him and pushing him away from their toys. She often throws food, but this week we've managed to get more into her belly than on the floor. We're hoping for a BIG growth spurt by the next GI appointment. She's still hovering around the 21 pound mark. We're slowly introducing the potty, although we've yet to have success. Grace likes to sit on her potty, pants around her ankles. Then she stands, wipes, throws toilet paper in the bowl, and waves goodbye to it. CRACKS me up! Hopefully someday soon, we'll have some actual results- no rush, though. I'm on the fence on transitioning her out of her crib. She seems okay with it, still, but she likes to sleep in our bed for naps, or even for fun. She's started jumping up and down in her crib, and I'm starting to worry about injuries. We'll see... anyone out there have any reccomendations?

We got GREAT news at our last cardiac clinic visit. Grace's pressures have improved so significantly they are not even viewable on the ECHO any longer! Woo hoo!! Dr. Shah estimates them to be in the teens/twenties. Considering we were in the 50's/60's pre-cath, I'm stoked! No more viagra for my girl! If we continue on the path we've been going, Grace may be able to hold off on her next surgery until closer to age 5. Let me say that again, because I'm still in shock over it, age 5!!! AGE 5!!! That is AMAZING! I won't be shocked if we don't get there, but at least we've made it a year and a half with no major "zipper" surgeries. ;)

Grace and Gavin's birthday party was a success. Since Grace was sick during her "scheduled party" we decided to do a combo party. Such a fun day! Here's the pics!

We also fed the ducks this past week- Grace said "duck" for the 1st time. Such an experience!! Too bad her favorite word this week is "butt".... :( Oh well, we can't pick our battles. LOL!

Wrapping up 2010...

2010-12-31T22:57:00.008-07:00

I can hardly believe the year is over- didn't we just begin? Gavin's first year of life has gone by entirely too quickly... I'm losing my baby years. Starting to get baby fever, a bit, but then I come to my senses again. :) Thankfully!

Updates: Gav's biopsy was rescheduled due to the awful, nasty, icky cold that charged into our home and refuses to leave... he'll have it done on the 13th of January. I'm hoping for good results, either the same or less eosinophils. Grace's ultrasound came back normal (Thank God!) and she's adjusting well to her SMO (foot brace). She's walking everywhere now, it's her only mode of transportation now- so exciting!! Gavin is starting to cruise- I'm sure walking won't be far behind.

Christmas was far too good to our family, we really are quite spoiled. The kids got a water play table, a pirate ship, Papa and Grandma and they are in LOVE! The Gonce family spent Christmas dinner with us, and it was awesome to watch the 4 kids play together- a beautiful day to spend outside, filled with giggles and splashing!

Grace checks the backdoor every day to make sure her boat remains in the backyard. She begs to play in it daily, irregardless of the weather. Poor girl got terrible goosebumps trying to play the other day- then bundled in a nice warm towel and got comfy and cuddly- mommy's favorite time!

We've survived a mini heart procedure (stent and 2 balloonings) and approach 2011 with hope for a quiet heart year. We've survived Gavin's crazy allergies, and also approach 2011 with hope for a diet that fits our growing boy. We continue to have all of life's blessings and love- our family being the greatest gifts.

With love to all, cheers to another year!

Our family letter for 2010:

Season’s Greetings, all! Hopefully this letter finds you in good health, and happy hearts! We’ve had a busy 2010 and 2011 is sure to bring even more excitement and joy.

We kicked off 2010 with a visit to Wisconsin, blessed to spend time with family over the New Year. Grace experienced snow for the first time, and wasn’t quite sure what to make of it. All of us enjoyed spending time with family, especially meeting our 3 nephews: Hunter, Cranden and Spencer. Upon leaving Wisconsin, we received a call from the adoption agency about a prospective placement. Again, blessings shine upon us, and within a week, we welcomed our son, Gavin, to our family. Gavin was born January 17th, weighing 6 pounds, 4 ounces. It was such a change for us to bring our child home from the hospital right away! Grace welcomed her little brother with welcome arms, and I know she’ll never be able to imagine her life without him.

February found us busy at home- nesting, and preparing Gavin’s room. We literally had less than a week to prepare for his arrival, so we spent many weekends at home enjoying our new family.

March was a busy month for our family. Felix visited Connecticut on business for 3 weeks, leaving me alone with 2 children for the first (not last) time. Wow, had I been taking his help for granted!! Thankfully, I had plenty of help from family and friends! My dad and step-mom came for a visit from Wisconsin, along with my aunt and cousins from California. Together, we saw 3 spring training games (Milwaukee Brewers and the Oakland A’s). Pam (Mimi) moved back from Michigan, and has continued to save my sanity as a live-in help, physically and mentally!

In April, we decided to sell our small home, as we were officially busting at the seams! Luckily, we have great friends, and we were able to move into a larger home at the end of the month. The month was a blur, with Pam making an emergency flight back to Michigan at the unexpected passing of her father. We’ve spent the past few months reliving his amazing life, and remembering the good times.

May was a blur, as spring often is. In addition to spring cleaning, we experienced spring moving- a new phenomenon, especially with 2 children! I vowed never to move again, without a moving crew- what a job! Gavin’s adoption day was officially celebrated on Cinco de Mayo. We were surrounded by friends and family at the courthouse, and then after during a celebratory breakfast. It was a wonderful relief! Grace continued to amaze us, as she went from 100% oral aversion, to eating baby food- literally overnight! Worried it was a fluke, we continued to feed her daily, often every hour or so. I’m happy to report that Grace is still eating, making more progress daily. On Mother’s Day, I received the best present EVER- Grace finally learned how to return a kiss! Of course, I’ve been smothering her with them every day since! Felix found himself being sent to Denver on business with a one-day’s notice. Making the best of his business trip, the kids and I traveled with him to Colorado. The kids and I then rented a car and made the 8 hour drive to Felix’s parent’s home in Cody, Wyoming. Mid-way I was blessed to visit family in Casper, Wyoming, enjoying laughter and pizza and a great night’s sleep, before making the rest of the drive. We spent 2 full weeks in Wyoming. The kids enjoyed their grandparents, great grandmother, great uncle, aunt, uncle and cousin as well as Yellowstone National Park. What a great visit!

In June, I became an officially ordained minister and officiated my first wedding ceremony- my mother and step-father’s! It was a beautiful, intimate affair celebrated in our backyard with friends and family. Grace learned to officially crawl in June, as well, but preferred her usual mode of transportation- the “butt-scoot”. Grace would literally sit on her bottom, scooting everywhere she needed to go, often quicker than I could walk!

July came and went, with one of the hottest summers I can remember here in Phoenix. To escape the heat, we took a family day-trip to Sedona. The 10 degree difference was AMAZING! We spent all day just enjoying the break. Felix and I celebrated our 9^th wedding anniversary on July 14^th- hard to believe it’s been that long! To celebrate, we took the kids on a 3 day staycation at a local resort. We spent all 3 days submerged in the pool- so fun! We learned that Gavin loved to swim and kick, in fact, he loved the water so much he would often fall asleep in his floaty for a mid-swim nap! After that trip, Felix and I decided we needed a vacation from our vacation, so we splurged on 2 nights at another resort for just us. Very, very relaxing!

August and September went by far too quickly- with not much “autumn” here in the valley. Luckily (for the kids and me!), Felix was sent on another 2 week business trip to Denver, so the kids and I visited Wisconsin and enjoyed the fall splendor! Felix was able to join us at the end of his trip, and we all enjoyed the visit with family. Felix and I were able to sneak away for a day, and I enjoyed playing tour guide. We spent the day touring the lakefront of Lake Michigan, even having lunch with a good friend at the American Club in Kohler. When we returned back to the heat of the desert, we played catch-up on our daily lives. The kids both had numerous doctor visits- including Gavin getting ear tubes, and Grace having a stent placed in her left pulmonary artery. Luckily, kids are super resilient, and they recovered quickly and seamlessly! We spent the remainder of the summer mostly indoors, while Pam and I worked on building a miniature kitchen set for the kids. Great idea- they love it!!

October was still warm, but we could see the change in seasons on the horizon. Gavin had some allergy testing done, and we were able to get some answers about his health. We’re still working on figuring out his perfect “food” combination, but I’m confident we’re making the appropriate strides towards our goal. Halloween was an exciting day for our family! We all dressed as a clan of pirates, went to a neighborhood block party, and then trick-or-treated into the night. Gavin was a bit overwhelmed by the whole experience, and fell asleep immediately once we got home. Grace decided she wanted to be a “big kid” and would walk, yes walk, to the houses! This was a first for us- such an exciting time! She proceeded to hoard her candy bars when we got home, eating a full-sized Baby Ruth bar!

The holiday months kicked off early with November coming so quickly! Felix and I were gifted tickets to Elton John, and made a great date-night out of the event. We planned a pre-Thanksgiving mini-trip to Disneyland, meeting good friends for 3 fun-filled days! We enjoyed the memories made with my niece and my god-children.

Everyday finds our family blessed beyond words. Our lives have changed significantly over the past few years, and with the holiday season upon us, we can’t help but be thankful to God for where we are now. Grace continues to grow stronger and stronger, tipping the scales at a whopping 20+ pounds! She’s walking more every day, and growing up way too quickly, having turned 2 on December 1^st! Gavin is turning into a little man, right before our eyes. He’s crawling EVERYWHERE, babbling up a storm, and trying to outgrow his sister at a whopping 19+ pounds! Their laughter fills our home, and for that, we are eternally blessed.

Happy Holidays to Each and Every One of you!

Spreading the Word...

2010-12-16T22:44:00.003-07:00

Dear Friends,

As many of you know, our son, Gavin (age 11 months), suffers from a rare autoimmune disease called Eosinophilic Esophagitis ("EE"). Kids with EE are quite literally allergic to food. The proteins in food cause a build up in the digestive tract and blood of a white blood cell called an eosinophil.

Eosinophils are meant to attack parasites, but the body of a child with EE mistakes food for a parasite. As a result, the build up of eosinophils cause numerous and very serious health problems, including, failure to grow and thrive, uncontrollable vomiting, severe stomach and throat pain, inability to sleep, joint pain, just to name a few. Many kids with EE can only eat 1 or 2 foods and need a feeding tube to survive.

CURED is a charity that I am actively involved with that raises money to find a cure for EE. CURED has donated over $2 million to research over the past 6 years. CURED has begun a $1 challenge. We are looking to find 500,000 people to each donate $1 or more to CURED, since that is something that almost everyone can do in these hard economic times. If you are interested in donating, please write Gavin's name on your donation and mail it to CURED at P.O. Box 32, Lincolnshire, IL 60069. or go to www.curedfoundation.org and make a donation via pay pal. Furthermore, if you wish to go even a step further, please forward this email to your family and friends. The more we get the word out there, the more likely it will be that we will reach our goal.

Thanks for your help!!!
Happy Holidays!!

MRI

2010-12-15T20:32:00.002-07:00

Gav's MRI results came back today.... 100% normal. I was so relieved at first, but not I'm just confused. If there is nothing wrong with him neurologically, what is causing him to be weaker (stiffer) on one side of his body? Why is he so hypertonic? Why does he have a sensory processing issue? I asked the nurse all of these questions, only to have her tell me that the doctor will be in touch... Fabulous. That will probably only take 500 years. In the meantime, I've made an appointment with a Developmental Pediatrician at the Melmed center. I'm hoping for some answers. I think I get more frustrated with Gavin's issues than Grace's because I have no way of understanding the problems, as they're not defined or explained. With Grace, it's fairly cut and dry. She has TOF, therefore she... etc, etc, etc. With Gav, it's he has nothing, yet these are all the bizarre things he does. No, I don't know why, that's why I'm here... UGH!

Respite is the BEST invention ever. Seriously. Today, I made 5 batches of cookies, all while Jess, our respite provider, read and played with the kids. Friday, she comes again, and I'll have all afternoon to nap, or clean, or even go out for a massage. I get approximately 72 hours per month, per kiddo, so... I have lots of relaxation coming my way. Woo-hoo! I feel guilty, but I am in such need of this, so I'll accept it and be thankful.

Tomorrow is another busy day for the kids. Gav is scheduled to have his EE biopsy, but since he's become super congested (and coughing), I think I may reschedule. Grace is scheduled for her bladder/kidney ultrasound. She had a UTI, and apparently it's unusual for kids her age. I'm wondering if other preemies have similar issues? I've noticed that she doesn't have the "inner protection" that other full-term girls have. I'm trying not to get too graphic here.... LOL!

I'm completely obsessed with the Glee soundtrack. It's somewhat disgusting. All of my ringtones are now songs that have either been on Glee, or are sung by Glee cast members. My favorites? F*&k You by Cee Lo Green; Marry You by Bruno Mars; Valerie by Amy Winehouse... the list goes on and on....

Random thoughts :)

Updates

2010-12-14T21:18:00.003-07:00

I'm so exhausted this holiday season! I have much to be thankful for, but I can't help but feel like I'm draggin'...

Today was a busy day, not unlike most days in our house. Occupational therapy started @ 9 for both kiddos. I filled out a sensory questionnaire about Gav, and all signs point to Sensory Perception Disorder, not a huge surprise. Gav has to be CONTINUALLY moving, receiving some kind of input on his tiny muscles, or he literally freaks out. It's completely exhausting for both him and me. We worked on a few things today- he loved them! We rolled him up tight in a blanket and then unrolled him, and then swung him in a blanket. What a giggler! After we were done with him, his crankiness set in, but I'd be pissed too if I couldn't eat! Gav was scheduled for his MRI with contrast (anesthesia) this afternoon, so I had to starve my bubs. He did well- such a champ when it comes to anesthesia. We got to visit with our favorite anesthesiologist, which is nice, but I imagine it sounds odd to "non-medical" families to have a favorite anesthesiologist... LOL! He's scheduled for another esophagis biopsy on Thursday, so we may be able to visit with her again. It's the little things... :)

Grace did great in OT this morning, too. She made cinnamon-applesauce ornaments, loving getting messy! She got to spend the rest of the day with Mimi, even making a trip to the park! At the park she learned to kick her giant ball, and even noticed her shadow! When I came home from the hospital, Grace had speech therapy- admit it, you're totally envious of my jam-packed life- and rocked it, as usual. She's becoming so much more verbal. It's easy to get frustrated with her slow and steady pace (desiring quicker results) but when I reflect back just one year ago, the results are seriously AMAZING! Last year, on her first birthday, Grace couldn't sit up on her own, she didn't allow food into her mouth, and she made little to no noises. Today, she's walking, sometimes running (and tripping), eating garlic cloves among other foods, and talking all the time! It's too cute. Her words are mostly mispronounced, but I understand her. I've taken to calling her language, Grace-ese-ian... A combo of Grace, Chinese and Russian.

Grace-ism's:

Diaper...Bye-per

Button...Booot

Ball...Bawwwl

Dora... Dohr

Love You... Too Too

Daddy... Dada

Gavin... Gah or Gahga

Brother... Bwubba

Bottle... Bobba

Water... Wah

Please... Peas

Book... Booooh

When she kisses us, she'll make the smacking sounds. When she drinks water, she'll say "ahhh" after- like it's the most refreshing thing ever. Too frickin' cute! She often sits in a quiet area saying, "Mama, Dada, Mimi, Gaah".... over and over and over again.

On her birthday, she finally "got" opening presents. Now, she's trying to open every Christmas present under the tree. Good times!

She's become a tiny "bag" lady. She steals my gift bags, uses them as purses, and walks around the house picking up all the random things laying around: hair clips, bobby pins, shoes, socks, etc. At a baby shower we hosted, a mom couldn't find her son's shoe. We looked EVERYWHERE- high and low- sure enough, it was in her bag! She's become a tiny mommy. When Gav fusses or cries, she'll rush over, hug or kiss him and then pat him on the back to calm him. Also, with her baby, Holly, she puts her to bed by throwing her in the play bassinet, then remembers to pick her up and kiss her, then throws her back in (often face down!) and then throws a blanket over her. Nice to know that's how she thinks I put her to bed, right?

Well, that's enough for tonight. I'm plain tired! Good night, world!

2010-12-13T23:49:00.002-07:00

New blog Design.... Lots more to follow! I'd like to treat this as a "diary" of sorts- so that I can remember what is happening in my day-t0-day life, rather than just being for emergencies (although some of my daily life is an emergency)!

Thanks for reading!

Welcome to Holland!

2010-10-16T10:14:00.001-07:00

Most of us moms have seen this, but I just ADORE this saying, and when I'm feeling discouraged or overwhelmed, frustrated or let-down, I read this and I'm back on track again.

Welcome To Holland by Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......

When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.

The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

New Design!

2010-10-15T07:58:00.002-07:00

Happy Halloween (almost!) to everyone! I had some fun with this last night- got my mind off things, for sure. Enjoy!

Eosinophilic Esophagitis.....

2010-10-13T19:48:00.004-07:00

What a mouthful, right?

Gavin just got diagnosed with this chronic, long-term, seemingly heart-breaking disorder. I hate to say this, but in a way, it's almost worse than Grace's cardiac defect. At least with Grace, she doesn't experience chronic pain ALL day EVERY day. I know that is silly, but at this point, I am 100% overwhelmed.

Frustrating to think of two very chronically "ill" children. I had dreams of going back to work someday, now that seems doubtfully possible. Our days are filled with appointments, therapies, feeding battles (for both), and sleep, sweet, sweet sleep. I'm a self-described loner these days. Except for a very few close friends, it's hard to find others that understand me and my kids, and what we're going through. I'm having a pity-party day- and I'm in a poopy mood.

This too shall pass.... right?

Here's some info I found about the disorder. Happy reading!

What is Eosinophilic Esophagitis?

Eosinophilic Esophagitis (“EoE”, formerly “EE”) is an allergic inflammatory disease characterized by an infiltration of increased numbers of eosinophils in the esophagus (the tube that runs from the mouth to the stomach). This infiltration causes inflammation of the tissue lining the esophagus.

In a healthy person, there are absolutely no eosinophils in the esophagus. There can be a few in the lining of the gut, but there should be none in the esophagus. A few can be found with reflux. A biopsy with an eosinophil count of 15-20 or more per high power field (under the microscope), may be caused by Eosinophilic Esophagitis. Other potential causes are Gastroesophageal Reflux Disease (GERD), food allergies and irritable bowel disease.

Unfortunately, many people go undiagnosed for years, suffering with what can be severe symptoms. Some people aren’t diagnosed until they are teens or adults and seek treatment when food has become impacted in their esophagus.

Recent studies at Cincinnati Children’s Hospital have shown that Eosinophilic Esophagitis is even more common than other well known diseases that affect the gastrointestinal tract such as Crohn's Disease and Cystic Fibrosis. Eosinophilic Esophagitis is the most prevalent of the Eosinophilic Gastrointestinal Disorders.

The current (*) estimated prevalence of Eosinophilic Esophagitis is 1 in 2000.

(*estimate as of 2007)

Symptoms of Eosinophilic Esophagitis include:

Reflux that doesn’t respond to acid reducing medication (i.e. Proton Pump

Inhibitors, such as Prevacid, Prilosec and Protonix)

Nausea

Vomiting

Dysphagia (difficulty swallowing)

Food impactions (food gets stuck in the throat)

Abdominal or chest pain

Failure to thrive (poor growth or weight loss)

Malnutrition

Poor appetite

Early satiety (feeling full sooner than you should)

Difficulty sleeping

In addition to the above, some people also experience pain in their lower limbs (legs, ankles & feet) which is not uncommon with GI disorders in general, ear infections, asthma, croup, migraines, mysterious fevers, and more frequent “colds” when they are reacting to a food. Behavioral changes have been reported in some children (*) and Autism Spectrum Disorders are not uncommon. (*If your child has ongoing behavioral issues, social skills difficulties or any developmental issues, you should speak to your child’s Dr and consider an evaluation by a Developmental Pediatrician.)

Diagnosis:

A diagnosis is made when an endoscopy is performed (by a Gastroenterologist) and multiple biopsies are taken. Eosinophilic Esophagitis can NOT be diagnosed by symptoms alone. An endoscopy with biopsies is the only way to properly diagnose EoE. Even if the esophagus looks fine to the person performing the scope, the biopsies may still show EoE. It should be noted that even if the esophagus looks normal, the presence of eosinophils (which would be seen in the biopsies) can, and often will, still cause symptoms. However, the Dr. may also see rings or furrowing, thickened folds, microabcesses, white plaques, etc. The pathologist will also look for tissue injury, swelling and thickening of the esophageal layers. With Eosinophilic Esophagitis, the eosinophils are limited to the esophagus and not found in other areas.

The formal diagnostic criteria should be in place soon, but Eosinophilic Esophagitis can be diagnosed when the number of eosinophils in a esophageal biopsy is greater than 15 – 20 per HPF (high power field) under the microscope. Multiple biopsies need to be taken, as it tends to present in patches. It is recommended that 4-5 biopsies be taken from each area of the esophagus: 4-5 from the top (proximal), 4-5 from the middle, and 4-5 from the bottom (distal esophagus), because with any less, it may be missed.

Once Eosinophilic Esophagitis has been diagnosed, food allergy testing is usually recommended to guide treatment. Skin prick testing (SPT) to different foods is the most common type of allergy testing, and may prove helpful, but EoE is caused by a delayed reaction, not an immediate reaction as is tested for via SPT. Patch testing, which looks for delayed reactions, is also being used with some success. However, it is not uncommon to have negative allergy testing and still react to those foods that are being tested. An EoE reaction can range from days to weeks as the number of eosinophils increase and cause damage to the esophagus.

Please note that if you or your child have previously had an endoscopy, but the number of eosinophils was not quantified (counted), you are still able to ask the doctor to have the biopsy slides reviewed and have them counted. Even if the biopsies are several years old, they can be pulled from storage (they are archived) and the can be reviewed / re-read. The report can then be amended to indicate the eosinophil count, even if it is zero.

Treatment:

There is NO cure for Eosinophilic Esophagitis, but the goal of treatment is to eliminate the eosinophils in the esophagus, thereby alleviating symptoms. The treatments include dietary restrictions and medications. Since EoE is usually food-driven (caused by a reaction to certain foods), most kids and adults with EoE respond well to dietary treatments, and this may be all that is needed for many people. However, once treatment is discontinued, the eosinophils along with the damage they do, will return. Treatment needs to be ongoing, which may mean continuing to avoiding the food triggers and/or taking medication.

Elimination Diet: Dietary restrictions are guided by food allergy testing (skin prick testing, RAST, and patch testing). Some doctors are recommending that the top 8 allergens be removed from the diet, in addition to the foods that were identified via allergy testing. The top 8 allergens include milk, egg, peanut, tree nut, soy, wheat, fish, & shellfish. Beef is also a common trigger of EoE, as are certain other foods. However, a person with EoE can be reacting to any food or combination of foods. While allergy tests are used to guide an elimination diet, there can be false negative and false positive test results. You only have to eat one food that was a “false negative” in an allergy test for the elimination diet to fail. When an elimination diet does not do enough to clear the GI tract of eosinophils (as evidenced by scope with biopsy), sometimes a stricter diet is needed. This may mean just removing some additional foods from your diet, or going directly to an elemental diet. Food trials can begin once the symptoms have resolved and the eosinophils are gone, as confirmed by a clear scope. They involve adding back one food ingredient at a time, looking for a reaction, to determine which specific foods are causing a reaction. Typically, one single food ingredient is trialed for a 2 week time, looking for a reaction. Some Drs vary the time period by patient (1-3 wks, typically). If no reaction is seen, another food can be added and the same time period applies. Usually, when 3-5 foods are added back, the person has another endoscopy and the Dr looks to see if the eosinophils have returned. If not, the foods are ok for that person to eat and they can move on to additional food trials. If the scope shows that the eosinophils have returned, all of the foods that have just been trialed must be removed from the diet once again. It could be that the person is reacting to only one of the foods, but without noticeable symptoms to confirm which one, they must all be suspected. Some people need to scope between fewer foods. Some even have even found that they need to trial only one food per scope, but this is not the norm.
Elemental diet consists of a medical food (elemental formula), without any proteins, either in its whole or incomplete form (pre-digested or hydrolyzed). Elemental formulas are made of amino acids (the building blocks of proteins), fats, sugars, vitamins and minerals. Amino acids do not cause allergic reactions but whole or partial proteins can.

Although new flavors are available to make the formulas more palatable, kids and adults who need elemental formula may have a difficult time drinking enough of it. To maintain proper nutrition, some require enteral feeding tubes, to allow the formula to go directly into the stomach.

Medications for Eosinophilic Esophagitis most commonly include steroids to control inflammation and suppress the eosinophils. Steroids are used if dietary changes do not resolve the symptoms. They can be taken orally or topically (swallowed from an asthma inhaler). Side effects from steroids often limit long-term use of oral steroids. Without removing the cause of the symptoms via dietary restrictions, the eosinophils will return once the medication is discontinued. The doctor will determine which, if any, medications are appropriate for each individual.

Photos!

2010-10-07T20:47:00.003-07:00

When Life Gets in the Way of Life....

2010-10-07T20:25:00.003-07:00

I think I may win an award for the absolute laziest, worst, out-of-date, archaic blogger. Would you vote for me?

Well, since April- way too much has happened, so I'll keep it short and sweet (if possible- I've been known to ramble...)

Gavin is almost 9 months now!?! Where has the time gone? He's pulling to a stand all over the house, trying to walk and keep up with his big sister, who just started pulling to a stand a few months ago. Seriously- I have 2 WAY too mobile kids! Gavin has some medical issues, we've discovered over time, but we're taking it 1 day at a time, and getting things resolved. Gav had like 18 ear infections over the last 9 months, so we finally got tubes in last week- what a difference! He's babbling, saying "dadadadadadada"- of course, daddy is thrilled. I won't burst his bubble and let him know that most kids say that word first because it's easier than mama. We'll let him think he's all that and a bag of chips ;).... Gav also had a modified barium swallow in August. I fully expected normal results- we just were sick of the reflux. Sadly, he failed miserable. Penetration to all levels up to honey thickness. What a shock! So, we began simply thick and it was TERRIBLE! He had such terrible gas and stools, I actually had to go to Bath & Body Works and get portable sprays for my car, otherwise I would gag and vomit. He was drinking like 80 oz per day too, just going right through him. So, now we thicken with oatmeal... It's been going fairly well. Today we had Gav's GI scope. Again, expected everything to be normal, maybe some signs of reflux... I was wrong, AGAIN! I don't think I will go into any other procedure with expectations- I'm clearly doing this wrong!! Gav has abnormal esophagus bumps, nodules, and folds. Apparently, they did 3 biopsies, and we'll know more next week, but it looks like long-term allergic reaction. Unfortunately, we're already on the most hypo-allergenic formula on the market (and the most expensive!), Elecare. Our GI explained we will probably have to do a complete allergen workup to figure out what specifically is causing this, and then if it is in his neccesary daily food, find a medication to eliminate it, if possible. Good times!

Grace is HUGE! She's so tall!! Sadly, she's only 19 lbs (Gav is 17.8), but we're working on weight gain. She's eating by mouth, but we can't seem to get her to take in enough calories. She gets her night drip for 12 hours, at 30 calories, 2 ounces per hour. She had a cath last week. Conduit looks GREAT. Wide open. Still leaky, but they typically only replace if there is narrowing. Her pulmonary artery pressures were getting higher, and the viagra wasn't making much of a difference. The cath was to check pressures and intervene as neccesary, or possible. They tried ballooning her left side, unsuccesfully. They stented the left pulmonary arteries- success! They ballooned the right, and it helped a tiny bit, but the arteries are so close on that side, that if they were to stent, they'd lose an entire artery (collapse). They may take the route at a later date, but for now, they left it at that. The cath was supposed to take about an hour- 6 hours later, with unexplained bleeding in the surgery, she was in recovery. Grace is nothing but normal when it comes to cardiac procedures, so frightening! The next day, true Grace style, she was up and scooting, as if nothing had happened. Crazy resilient girl! Pre surgery her pressures were at 60, now they estimate them to be at 35- improvement! By Christmas, fingers crossed, we should be off all medications (viagra & aspirin).

Grace's continual "side-effects" of surgery, ie. complications, have us worried, frustrated and concerned. After talking with other heart mamas, we decided to look at other hospitals. Right now, Dr. Handley @ Stanford (Lucille Packard Children's Hospital) is looking at her records and putting together an operative plan. He's AMAZING and if there are extreme complications, Stanford is where she'll need to be. (I refuse to mention the "T" word...)

We moved into a bigger home- thank God! Our other home is still on the market, but we've got an approved short-sale, so only time will tell. Hopefully this whole thing will work in our favor, and we'll be able to buy again soon.

I considered going back to school, but with the kids and their appointments, therapies, etc. there is no time left. Which is fine, I'm okay with being home with them for a while longer. We'll see what time brings..

There is a TON I'm leaving out, I'm sure, but we'll catch up over time. Here are some recent pics of the kiddos- so big!!

My computer is being crazy stupid, so I'll post another blog with them... UGH!

Stomach Flu Funk!

2010-04-02T17:34:00.003-07:00

Miraculously, I am the only person awake in the house at 5:30 on a Friday afternoon...

The stomach flu has stormed through the Marchese household and taken both Grace and me hostage. Gavin, Felix, and Mimi have seemed to weather the storm thus far, but it's not over till the fat lady sings, and I'm not singing! :) The last 4 days have been filled with pediatrician visit after pediatrician visit, I literally went 3 times in 1 day!! After getting a virus diagnosis, I suddenly came down with the same symptoms- and they weren't pretty. In the last two days I've drank 2 liters of Ginger Ale and managed to eat 5 crackers- it's truly a great diet plan, but I feel like I have the world's worst hangover because I'm still uber dehydrated! I can't even imagine how poor Gracie must feel- she just can't decide if she wants to lay down, sleep, be held, play.. and I haven't seen a "real" smile in almost a week. Poor baby! On top of that, we've got her molars coming in- the bottom left has come through and both the bottom right and upper left are starting to. I guess when it rains it pours, eh?

We never did make it to the Disney on Ice show. We had to give up our tickets, because Grace was too sick and I didn't want anyone else to get this monster sickness, especially other immuno-suppresed kiddos. No fun!

Off to bathe my babe- hopefully she'll feel a bit better. She's down to 17 lbs 10 oz wet and with clothes on... NOT a good sign... Prayers, please!!

A Long-Awaited Update!

2010-03-31T21:33:00.006-07:00

After much harassment (Tasha, Danelle, Andrea- you know who you are!), I have decided to visit my blog, or lack thereof... I am seriously (cross my heart!!) going to try to update this at least once a week, letting it serve as a sort of family journal. At least, that's my intent. We'll see how long I last, eh?

Lots going on, as usual. House is officially on the market- it makes me cringe looking at the listing price. After much debate, consideration and prayer, we have decided to short-sale our home. We owe over 230k on this small 3 bedroom 1475sq ft home, and I can't see us ever making our money back, and we've CLEARLY outgrown this home, so... on the market it went, for a measly, MEASLY 94k!! Can you believe it?!? UGH! Darn Phoenix market!! We'll be moving, regardless of the sale, on May 1st. We're renting a good friend's home, allowing them to buy the bigger home they've been dreaming of. Eventually, in a year or two, we'll buy again, since Felix isn't on the title of this current home (bizarre- since we bought it together??)... Alas, packing with two children will prove to be interesting. Felix was supposed to go to Connecticut for another 2 weeks, right up until moving day, but thankfully, his trip was cancelled- HALLELUJAH!

These past few weeks have been mad-crazy too. We had Papa & Grandma from Wisconsin visit for a week while Felix was in Connecticut- what a lifesaver! I banked up my sleep during their visit and they happily visited with their grandchildren. During the visit we managed to do a few Spring Training Games along with my aunt and two cousins.

It was an awesome visit! We even did a mini-family reunion at Oregano's with my aunt, uncle and another cousin who I hadn't seen in over 20 years!!

Mimi, or Grammy Pammie, moved back from Michigan this month too. She's been staying with us and helping me with the kiddos- HUGE help! I seriously don't know how I could do it without all of the support from my family and friends.

Grace has had pneumonia, severe constipation, gas issues, a yeast infection, an ear infection, RSV... Gavin has had ear infection after ear infection. If he keeps up his trend, we'll be seeing ear tubes in his future, poor little man! He is growing like a weed! Almost 11 pounds, slowly catching up with his sister. Grace is hovering at 18 pounds, despite increasing her caloric intake. We're back to formula food again, since she became extremely constipated, but things have improved greatly, so we'll stick with it for a bit. She's been vomiting a TON today, but apparently, it's some sort of viral infection, so we wait it out with lots of Pedialyte on hand. Good times! Grace is able to pull herself to a sit and a tall kneel from lying down, and now able to army crawl- PT is working! I about fainted the morning I walked into her room and she was sitting up playing in her crib. Now, she never wants to lie down- she's always sitting, even falling asleep most nights sitting up! Silly girl! Gavin is cooing and doing everything age appropriate. He's such a wiggle-worm. If I lay him on his belly, he'll inch worm off the mat, and onto the cool hard-wood. He's constantly bearing weight on his legs and pushing off of me. His smiles melt my heart- he's still only smiling on his terms, but when I see it, I melt. Both of the kids were SPOILED by Papa & Grandma, of course. Grace got her own car, which she adores. We try to get the mail in it every day, when the weather permits. She also got her own drum set, so she's continually banging on her drum. Gavin got a new remote control mobile. What a great concept! He will lay quietly in his crib cooing and chatting with the animals, while his glow worm sings soft lullabyes.

Tomorrow we are doing Disney on Ice with Grace, a Hope Kids event. I'll post some photos. Hopefully we'll have a smoother experience than my cousin Danelle did with her son.

So, that's it for now- stay tuned for another update, coming your way soon!

Cheers!

Colicky Craziness!

2010-02-18T20:54:00.013-07:00

WHEW! I'm still alive- although, you probably couldn't tell by my lack of blogging. What an exciting two months we've had... (okay, so it really has been 2 whole months since my last post)...

The Wisconsin trip was a blast! We spent most of our time with family, doing family dinner, having Grace play with her cousins, celebrating the new year with my step-brothers, and even visiting friends from high school. Grace wasn't such a fan of the cold, but neither were we. Getting her in and out of the vehicle in -20 windchill weather was, well, unpleasant. It didn't snow the entire time we were there- I was bummed, as I was really looking forward to a majestic quiet evening. The first snowfall is always so magical- it's quiet, and it's like a fresh start. I think the best I've heard it described was in an episode of Gilmore Girl's. Yes, I watched that show. Yes, I loved that show. Yes, it was entirely unrealistic.

Rewinding a week or two before our Wisconsin trip, and possibly to one of my more recent posts, I referenced adopting another baby. Grace's birth mom was pregnant, and didn't seem sure as to what she was going to do- it was another little girl. The timing wasn't ideal, but we would have been blessed and thankful, and stressed, but blissful. God had his hands in this, as Grace's mom decided to parent her, and we were able to focus on Grace. After examining the timing, and getting ready, we decided that maybe we were ready, after all, to have another baby. We debated trying on our own (I battle with PCOS, and my husband with less than ideal sperm counts), knowing the cost and stress involved, or adopting again. After praying, and talking with friends and family, we knew in our hearts that we were meant to adopt. We decided to stick with the agency that finalized Grace's adoption, AASK (Arizona Adoption of Special Kids), a very small, slower agency. We figured on a 2-3 year wait, at max, and prepared our birth parent letter.

Back to Wisconsin... while there, I got a text from the social worker advising me to check my email. A local couple in their 30's were unable to financially keep their baby boy, and they were looking for families. We fit their ideals- would we be willing to submit our profile? We prayed, and decided that yes, we would. We figured it was out of our hands, and that 4 other families were being submitted too, so if it was meant to be, it would happen, and if not, God would provide. Honestly, we didn't think we'd be chosen as I was very honest about Grace's heart defect, and about the fact that we had adopted her- I figured they would choose someone who was unable to have children, giving them the opportunity to be parents. So, we got on the plane to come home, and got the phone call the next morning- they picked US!!! The parents wanted to meet us, and the baby was set to be born within 6 days. Wait- 6 days?!? OMG!! We scrambled- we wanted to get stuff, but you never know with adoption, the parents can change their mind at any point until consents are signed. We debated- do we plunge both feet forward, or do we wait? We plunged, and thankfully so! We bought a dresser, had a painting party, and received boy clothes from friends, and even strangers (friends of friends). We are so very blessed by the love and support we receive. My friends insisted on throwing me a shower, so I got my essentials, and tried to calm my nerves. On January 17, 2010 Gavin Wyatt Marchese was born. Gavin weighed a tiny 6 lbs, 4 oz and was 19 inches long.

We were able to be there immediately after birth, and we were the first people to ever feed our son- AMAZING! You have to imagine how foreign this was to us- we never had the opportunity to do any of this with Grace. Heck, we couldn't even hold or touch Grace for the first few weeks! He is perfect in every way. Being the neurotic heart mom that I am, I took him to the doctor and grilled our poor pediatrician. Our pediatrician, one of the most amazing men, simply laughed at me, and told me that try as he might, he just couldn't find anything wrong with our son. He proceeded to tell me that this was common for parents of special needs kiddos.

Gavin came home 24 hours after birth and was a perfect angel, until about 2 weeks ago. Then, he started crying non-stop, especially in the evening, arching his back, tightening his stomach, screaming and screaming and screaming.... Couldn't take it anymore- thought I was seriously going to lose my mind. Once he starts crying, Grace chimes in too. Went to the doctor. Diagnosis: colic. We're switching to an elemental formula, one that's already broken down so his stomach doesn't have to work so hard. In the meantime, we've tried pretty much every possible hold, swaddle, swing, stroller, walk, car-ride, etc. We tried gripe water and it worked like a miracle for the first night, but not so much there after. We are officially in a bad place! Hoping and praying that this gets better- I am massively sleep deprived, and my hubby and I are irritating one another non-stop.

Grace has started a blenderized diet of real food. I couldn't handle the puke fest every day, and figured there had to be something better and healthier than what she's been doing. She's almost 15 months and still on an overnight drip- time to get things in check. So, we went to GI with high hopes.... and got shot down. I won't name names, but our experience with them on this visit was awful enough to prompt me to write a letter. The letter still hasn't been written.... but I'm still pretty peeved. So, I did some research. There is a book about this kind of diet written by two professionals out of Tucson. I emailed one and begged for a name of an RD, and was emailed immediately- Hallelujah!! In the meantime, I dove in feet first, taking Andrea's lead (Owen's mom). We've had a few hiccups, but mostly she's doing AMAZING! She has more energy, and seems to be in a better mood. We've found she's allergic to bananas and possibly milk, but we're being creative. The RD is putting together a more balanced menu for us, and trying to lessen volume but increase calories. Either way, this is the BEST thing we've ever done!

Life is obviously chaotic for us- a CHD toddler and a colicky infant, could it get any more exciting? :) We take it gladly, except in the middle of the night, but even then, we survive. Grace is on the cusp of crawling, her hips are a bit too weak (low-tone from being a preemie), but we're getting there. She can stand holding on to an object for almost 20 minutes.

She's got PT, OT and feeding therapy at home, and then PT at PCH. Heart-wise, we're looking good. We've increased her viagra (the pressures were still a tad high), but we're hoping to not have a cath until this next winter. We had an RSV scare this past month, but Grace made it through with flying colors- mostly because of having access to Synagis. Seriously, that is a blessing!

We've been watching the Olympics (well my husband has), and I heard from another heart mom, Melodie (Scarlett's mom) that Shaun White is a CHD survivor, dx'd with Tetralogy of Fallot. The same thing Grace has! So, I read up on him, and I'm completely confused.... he's only needed 2 open heart surgeries, both before the age of 1... So, what did he do? Why is it that every other TOF kiddo has multiple surgeries throughout life, as they outgrow their conduit? Maybe there is another kind of TOF?

Throughout this mass of craziness, I've had amazing support, as mentioned above. But, seriously, Tasha & Adam, (Bree's parents) I couldn't have done this without you. Your support, at all hours of the night, has been life-saving. I'm thankful to have such a great friend living so close (5 houses away), and Grace and Gavin are blessed to have such wonderful kids to play with!

Making a Valentine's Day card for Daddy- so sweet! She ate the crayon and colored her face instead...

A lot, right? WHEW! We made it... and I again, will set a resolution to blog more. The little stuff and the big stuff. Night all!

PS- Pray for Gabriella! She's on the transplant list, but she's running a low-grade fever. God Bless that little warrior!

Updates and Future Worries

2009-12-21T08:58:00.003-07:00

I am officially a slacker!! I haven't updated this in over a month- and yet there has been so much that's happened for all of us!

Unfortunately, Grace is sick AGAIN! We had a tiny cold at the end of November, but it's back again. We saw Pulmonology last week about it. They're not too worried (Grace has asthma & BPD), the mucus is clear, and she doesn't seem too lethargic because of it all. Unfortunately for us, Grace can't cough or blow her nose, so we're in constant puke-fest... I think I've gone through 3 shirts already today and it's barely 9 am.... ah, the life. :)

Christmas is OBSCENE this year! Grace is just barely 1, yet the tree is filled, and overflowing with gifts for her. I think we'll have almost enough toys to play with only 1 every day of the year (not quite, but you get the idea...) We were invited to a "heart kids" party at the Athertons. What a wonderful way to meet other heart moms and kiddos! We had a blast, and enjoyed chatting with many familiar faces, and new ones too! Grace was a bit unsure of Santa, but he was so calm with her- such a blessing! We found out after the photos, that Santa was the same Santa that saw her last year. Basically, Grace was too sick with NEC to be photographed with Santa last Christmas. My primary nurse was upset that Grace didn't get any pictures, and asked Santa (a nurse at the hospital) to come back especially for Grace. I have the best photos of him in a red polo shirt, taking pictures with my newborn Gracie in a stocking. So sweet! To realize it was the same Santa- that was amazing! He met our Grace at a time we weren't sure she'd make it. I think he was just as surprised at her health and growth as we have been. Grace was spoiled at the party too! A full stocking of toys and bubbles, a snow hat, candy... the list goes on and on!

The snow hat is going to come in handy. We're taking our first family plane ride this coming week, leaving December 30th. We'll be flying to Milwaukee, Wisconsin to see my dad, step-mom, siblings and all of their children. I haven't been "home" in over 9 years, so it's about time! I'm looking forward to Grace meeting her cousins and spending some time with Papa & Grandma. Of course, I'm expecting more spoiling to continue... :)

Grace is finally sitting up all on her own- completely unsupported! She can play for hours just sitting up. It's wonderful! We're working on crawling still. She doesn't LOVE tummy time, probably because of the G tube, but she allows us to place her in the crawl position. She just doesn't know what to do from that point. :) She looks more and more like a toddler every day, I'm amazed. It truly is going by WAY too fast.

Grace is still on the viagra for her heart pressures. We'll know soon if it's enough or not. We see Cardiac on the 30th, minutes before leaving for the airport. Her asthma is under control. Knock on wood, we haven't had to use her rescue inhaler or her prednisilone. GI... well, that's a WHOLE 'nother story. She's still puking, but the rinitidine and prevacid don't seem to be making that big a difference. I refuse to do the fundlipication (spelling?) where they wrap a portion of her stomach around her esophagus to prevent her from puking... EVER. That might be great for some kids, but I don't think Grace will be a puker forever. It seems like with her G tube and then when her heart has higher pressures or is working harder, she'll puke. Hopefully it's a temporary problem until she grows taller- stretching the length between stomach and esophagus. Speaking of tall- Grace is 2 feet 4 inches!! Can you believe it?!? That's almost half my height! She's 17 pounds and growing, so we're getting there.

I find myself thinking about the future lots these days. I have a lot of worries about staying here in Arizona long-term. We came here for a job relocation, with a 5 year plan. Neither of us work for the company any longer, and it's been exactly 5 years. I have some friends that work in the school systems (names not mentioned to protect the innocent) who have jokingly/not so jokingly told me to move before Grace gets to kindergarten. The schools here- well, let's just say they're not exactly blue ribbon. Also, the heat! Gosh, the heat! Her poor heart- I can only imagine that playing hard with her friends will be tiring, but adding the heat to that combination... Yowzers! Maybe I'm irrational, but I watch the news and they label Phoenix as the #1 kidnapping place in the entire US. If that's not every parents worst nightmare, what is? It's very frustrating... Felix and I loved how we grew up, and we want to give Grace that same opportunity. Unfortunately, they are VERY different upbringings! I grew up outside of San Francisco, spending most weekends at a museum, or China town, or the theatre. I want my daughter to have cultural opportunities- there is a serious lack of that here in Phoenix. Felix grew up in Jackson Hole, Wyoming. He wants the small town feel for Grace. One where the neighbors know each other, the town goes to the high school football games... I get that. So, can't we leave in a suburb of a major city? One would say, you are.. now. You live in Surprise, a suburb of Phoenix. Yes, true. But, Surprise is the same home after the same home- with no character, history, and bad schools. And Phoenix, not exactly the most cultural place I've been to. Then I start to worry about heart transplant. Apparently, Grace may need to be a candidate here in the next 15 years. Yes, I know that's a long time, but I'd rather be prepared for the worst. Grace has been ANYTHING but normal throughout all of her hospitalizations... Sadly, we owe WAY too much on our home. And, honestly, I can't see us recouping a good portion of it in the next 20 years. So, we either rent it out, and eat the rest each month, or we short sale and walk away, or we stay put, and keep thinking... What to do, what to do?

I keep reading about the best cardiac facilities in the US, and Phx Children's is NEVER on the list. Granted, it's a small hospital, and will probably be on the list at sometime in the future with the major expansion, but it's still not a transplant center. So, we've looked at Seattle (too rainy), Salt Lake City, Denver, Milwaukee, Ann Arbor, Los Angeles (too Los Angeles), San Francisco (too expensive!), Houston (too wet and humid, and well, Houston!), Nashville, Altanta (too, I don't know, HOT!), Raleigh, Boston (too much snow!).... UGH!

Anyways, that's a day in the life of us. We're crazy, busy, boring, tired, energetic, loving, annoyed. :) A day in the life...

Christmas and 1st Birthday Photos

2009-11-24T20:47:00.004-07:00

Just procrastinating on packing.... I did Thanksgiving today and I am BEAT! I've been cooking since yesterday morning. Our day went from having 11 people, to just the 3 of us. It was a surprise, but because of sick people and germs, neccessary. It was actually very quaint. :)

Tomorrow is the House of Mouse! I'm starting to feel icky myself, so I've taken 6 Vitamin C pills, Zycam and going to bed in the hour.... let's hope that will keep the germs at bay!

Here's our photos from tonight- enjoy!

Happy Thanksgiving to all of you! Enjoy your families, and your blessings, and be safe!

XOXO

Emotional Ups & Downs

2009-11-22T11:27:00.010-07:00

Like most other heart moms that I know, my days are filled with emotional ups and downs. Most of the time I am able to remain fairly immune to it, only truly breaking down or getting overly ecstatic when the situation warrants it. Maybe this week was different?

Had a really hard time at PT @ Phx Children's. Our therapist is very sweet and did a wonderful job, but she mentioned she was fairly concerned about Grace's plagiocephely (flat head). This wasn't the first time we'd heard someone mention this- most agree that it's because of her multiple heart surgeries and prolonged hospital stays (NICU, PICU, etc.) that require her to be lying down. No one ever mentioned that they were overly concerned, most mentioned that they expected it would go away over time, with her spending more time in a seated position. However, the PT wasn't convinced. The PT advised me that I really should consider a DOC band- basically a helmet that Grace would wear for 23 hours a day, probably for 6 months. She reccomended that I call her pediatrician ASAP for a referral to Cranio-Tech @ Phx Children's and get her in. She explained that her sense of balance would be off, as her head is over the front of her spine entirely, and she would never fit into a standard bike helmet. Now, I'm pretty darn good about keeping my emotions in check until I get a chance to process the information. The car ride home was BRUTAL! I was bawling hysterically. I called the doctor for the referral, and my family, and my spouse. I can't explain this without sounding crass- so bare with me... Grace has been through a lot this year, yes? And you can imagine the questions that I get practically every day? They used to ask me if she was going to live, or if she was smart, now it's "Is she feeding on her own yet?" "Is she sitting up yet?" "She's walking, right?" UGHH!!! Enough!! I HATE, HATE, HATE those questions!! I know it's not my fault, but it makes me feel like an incompetent mother, like I'd prefer my kid just sit in a chair for the rest of her life. My mom tries to remind me that these people typically mean well, but that they don't have the experiences we've had, aka a heart baby. So, when I thought of one more thing- a very visual thing, the helmet, I lost it. I couldn't imagine keeping my poor little one in this helmet for 23 hours a day- sleeping, eating, etc. But, if it was going to help her, I was going to do it. Thankfully, my hubby asked me to call the pediatrician for a consult and referral. Turns out, the DOC band is typically most beneficial in 6 months and younger children- Grace is a year in 8 days! Also, the DOC band is PURELY cosmetic- there is not a true need for it, so long as no part of Grace's skull is pushing on any nerves (it's not). So, all those tears- unneccesary. Although, it is nice to get a good cry in every so often. I don't usually allow myself to really process my experiences. It's odd because people always comment how strong I am, but maybe it's really because I'm in denial? How's that for mentally healthy? HA!

Anyways, the rest of the week was WAY better. New Moon!! Woo-Woo! We had a fabulous time. We decorated my van (calling it the New Moon-ie Van), met Embry Call (Kiowa Gordon), won a trivia contest, got free loot, and saw the inside of a Embry's limo. After all that, we got to see the movie! The movie was much better than I expected, especially since the 1st was so terrible. I had a genuinely GREAT time, but was super exhausted the next morning. Life was rough that Friday.

Saturday evening we decorated for Christmas. Yes, it's early, but, we lost all of December, January and February of last year- living at Phx Children's. This year, we're having extra Christmas and loving it! Grace was even able to help put up some of the ornaments- she's such a big girl!

I can't believe she's going to be a year!! I have taken some time this week to look back on our year- she went from a 3 pound baby, to a big girl who has 2 teeth, can stay in the crawling position, and who laughs uncontrollably! I love her!!

Her birthday stuff is almost done- I'm excited to celebrate our year. It's been the best year of my life, but also the scariest- one I would never want to do over again, but if it meant receiving my blessing again, I'd sign up in a heartbeat.

Catch-Up!

2009-11-18T07:32:00.006-07:00

Okay, I am officially the world's greatest slacker! This blog hasn't been updated in FOREVER! I find less and less time to do things (chores, shopping, reading, surfing the net) so I just do nothing when we're home. :)

We are in the midst of a very packed schedule, filled with therapy and appointments. As you know, Grace's 1st birthday is right around the corner, so all of those random specialists we saw in the NICU want to follow up with her..... that means we get to see the eye doctor, the geneticist, the neuro doc... such great times! Add to that the normal cardiac follow ups, GI and nutrition follow ups, pulmonology follow ups, developmental pediatric appts, pediatrician appts, etc. and we're exhausted! But wait, there's more!! We also have home physical therapy on Mondays, speech therapy downtown on Tuesdays, physical therapy @ Tbird Hospital and speech therapy at home on Wednesdays, Early Intervention at home on Thursdays, and occupational therapy @ Phx Children's on Fridays. But wait, there's even more!! Admit it, at this point you're super jealous and wish you could be me, right? right? Now Phoenix Children's is wanting to do intensive speech/feed therapy... wait for it.... 3, yes three!! times per week. Eventually I may just give up personal hygiene all together, and just become "that" mom. What a schedule!! It's sad that my fantasies these days consist of playing hooky from appointments or sleeping.

Okay, I'm off that soap box. Grace's cardiac follow-up didn't go as well as we hoped. It could have been so much worse, but it means we'll be followed each month again, instead of every 3 or 6 months. The pressures are still really elevated on the right side of her heart, causing the heart to grow only on that side. Instead of one "color" of blood on the EKHO, you can see the blood shunting back into the arteries, because the pressure won't allow proper blood flow. Grace is officially on Viagra now. Crazy, right? Apparently Viagra's original use was for heart problems. I wonder how they found that well known "side effect"?!?

Grace is able to tolerate food being around her! She's been found playing with food, even tasting it. This is progress for us! I hope to be off the G tube by age 2. We'll see! She's really progressing in physical therapy too. Grace can sit on her own, as long as her hands are planted on the ground in front of her. Grace can also hold herself in the crawl position, but can't quite seem to get herself in the position... still, progress! I'll take progress. :)

New Moon comes in 1 day!!! I'm such a geek for that series, but my friend Blair puts me to shame. She knows every nuance of the series, book, actors, etc. We're going to the midnight showing here in Surprise, hoping to meet Kiowa (the wolf pack member) and winning some cool prizes. We decorated our own t-shirts. They're actually really cute, and don't seem all that cheesy. I can hardly wait!! Not sure I can stay up until 3 am, but I'll make every darn effort.

Grace's birthday invitations turned out so stinkin' cute! I embossed silver snowflakes on white card stock, then placed that on silver card stock, with a silvery-purple background. An adorable quote completed the invitation, of course! I've got a lollipop tree, a photo tree, a cocoa bar, time capsule.... I'm excited! Unfortunately, we've only got 1 RSVP! Oh well, if nothing else we'll stay germ-free and celebrate with our tiny family. I wanted to invite all of the other heart moms that I know, Owen's mom, Gabriella's mom, Scarlett's mom, and Ivana's mom, but I didn't want to spread any scary germs to them, or put them at risk. So, instead we're keeping it low-key, and if only 1 person shows up, so be it!

Felix and I have decided to be wild and crazy and take Grace to Disneyland over Thanksgiving. We haven't been in over 11 years (it was our first out of town trip together), so we're looking forward to it. I know she won't remember ANY of it, but the smiles and photos will be enough for us. I plan on carrying a jumbo hand sanitizer with me, and clorox wipes. Am I a freak, or what?!? I'll be sure to post pictures as soon as we get back. Hopefully we'll see some family while we're down there too.

Roxi is recovering from surgery... she was diagnosed with cancer. :( Roxi hated having the cone on her head, but she's a good pup and managed to handle it. She even let me take her stitches out! Good girl, Roxi!

I can't think of much else that is going on in our lifes- there's probably a ton I'm missing, but it's early, I'm tired, and I have to get Grace ready for therapies. Happy Turkey day to all of our friends and family! God Bless!!

Self-Imposed Isolation... AKA Cabin Fever!

2009-10-21T06:56:00.005-07:00

Grace playing Rock Band on daddy's lap... She can really belt out a mean Eye of the Tiger!

It's not even November yet and I already have massive cabin fever! This isn't a good sign, right? Felix leaves for Connecticut on Sunday, so we've been gearing up for that. He'll be gone a total of 2 months between now and March- and did I mention that we may have another baby coming? Oh, I didn't? :)

I don't want to spill the details yet, but you all will know soon enough... she's due in 9 days. It's just a matter of what birthmom decides to do, so we'll see. And, if you've done your math, this means Felix will be out of state when the big moment happens. Lucky me! Can you hear the crazy sarcasm?!?

We've been keeping away from other kids, sick people, public places, etc. So, this pretty much means we've been confined to my vehice and my house. Like other heart moms out there, I have a bottle of sanitizer everywhere I go- one in my purse, one in my diaper bag, one in my car, one in my husband's car, you get the point... And, I have washed my hands so often that my wedding finger is dry and scaly. Yumm!

DDD has started with feed therapy, and PT and Early Intervention start this coming week. Feed therapy went amazingly well. Grace took a few sips from a sippy cup and a few bites of applesauce. Unfortunately, getting her to replicate it again has been trying.... They come again today, so hopefully we'll try some new techniques.

Grace's teeth are killing her- and me! She cries, and cries and cries, constantly chewing on her hand and fingers. Often to the point where she is gagging herself! Motrin is my best friend.. as is the homeopathic teething tablets/gel.

She seems to be in pain lately around her G-tube spot. I see a ton of granulation tissue, built up right around the insertion site, and it seems whenever we move the mic-key button, she's tensing her stomach muscles and screaming. Is this normal? Does anyone else experience this? Also, every morning between 5 and 6 am, we've been having puke fest, 2009. Literally, every morning... We've tried stopping her feeds at 4 am, stopping them at night all together, upping her Prevacid to 5 ml's before bed... NOTHING! We've gone to bathing her in the morning just to wash the puke from her hair... It's a lovely experience. Nothing like being woken up to the sounds of gagging, puking, and retching. I'm sure it's nothing short of pleasant for her also.

Grace's 1st birthday is just around the corner.... time flies! I've picked a theme, and have a ton of ideas. I need to get over to Michael's sometime soon (maybe later today?) and get the invite materials and stuff. I'll post pictures of my progress at some point. The theme is going to be Winter ONEderland. I plan on having pale pink, silver and white as the colors. Now I'm trying to figure out where to do this! I plan on having 20 adults, 10 kids or so... my house is probably too small. Any ideas? There aren't any true community centers here in Surprise, so that's out... but be creative. I need help! :)

I'll keep everyone posted about our BIG possibility... Till then... Ciao!

Germy Germs!

2009-09-30T15:56:00.004-07:00

Uh-oh! The cold and flu season has unfortunately made it's appearance at the Marchese home. Not sure where we got the bugs from, since I'm super careful with Grace, but they're here none the less. We had a fabulous visit with family this week! It was awesome to see my Aunt Debi, an oncology & respiratory nurse @ Oakland Children's Hospital. I was able to pick her brain about the H1N1 vaccine and other quandries. I saw my cousins Danelle, Sean and Megan. Danelle and I had been best friends growing up, spending practically every weekend together. I think the last time I saw her was when she was pregnant with her 2nd child, and now she's pregnant with child #5, so it's been a good 5+ years! Way tooooo long! Megan is exactly as I remember her- spunky and sweet! She is going to make an amazing mother someday. She was a HUGE help with Grace- taking her whenever she was fussy. Sean is a big teddy bear! I can't believe how tender-hearted he is. Obviously I enjoyed visiting with them!

My dad & Anne (my step-mom) spoiled our family rotten! Grace got a whole new wardrobe, including picture clothes. She also got an early 1st birthday present- the rainforest exersaucer. She LOVES it! We all couldn't stop singing the "Red, Yellow and Blue" song that it plays. I have a feeling I'll be singing that for weeks, maybe even months to come!

**Update- it's now like 3 weeks later and I'm still working on this post!!**

It's been a nutty few weeks. We've been sick, and sick, and sick some more. Thankfully nothing serious. I chipped a tooth on Grace's heart beads (don't ask...) and now I get to spend some time at the dentist this coming week, woo-hoo! (NOT!)

We bought a new car this past week. I flat-out refused to look at a mini-van, which is what Felix was angling for, but by the end of the day, I drove off in a brand-new red Chrysler Town & Country. And guess what? I LOVE it! Seriously, LOVE it. I find myself finding small errands to run just to be in my new car.

Grace had her dreaded cath this past Friday. We were told that she would at least be overnight, but to plan for a few nights, knowing Grace. They were going to try to balloon her tiny pulmonary arteries, and possibly stent them. We had put it off because of her stuffiness, but they decided she was well enough to proceed, so under she went. This time we got to watch her fall asleep- very bizarre, I've never seen anyone fall under anesthesia (outside of TV, of course). We sat down and settled in for what was sure to be a 4 hour ordeal, and literally 1 hour later, we saw Dr. Graziano approach us. I panicked- that could NOT be a good sign. But, praise God, it was! She was doing fabulous- they were done, yep, done already. They didn't need to intervene at all, her arteries were growing, so she was on a good path. The conduit that they installed was leaky, but that was fairly normal. Her pressures were good, slightly elevated on the right, but good. They'll probably put her on Cedenafil (Viagra) to lower those pressures, but we'll know more at our November cardiac appointment. She'll probably make it another year or two before we're ready for her next repair- woo-hooo! The best news? They were going to let us go home that same day. That has NEVER happened for us- we were over the moon. We spent 6 joy filled hours in recovery and at a quarter to eleven at night, we ran from the hospital and into our beds at home.

I had the honor of meeting little Ms. Gabriella that day, too. She's as beautiful as her pictures- what great hair! She looked fabulous, and seemed to be in good spirits. I had never met her or her family, but as we were walking back to recovery, I heard a family mention Dr. Shah. I turned my head and saw Kristi. It was a brief meeting, but hopefully we'll have time to chat more in the future. Small world! Please continue to pray for Gabriella and her wonderful family. She's been through more than any little girl should be, and she has a long road including transplant ahead of her.

We finally are DDD approved and ready to go! Our first feeding therapist is coming on Wednesday- I can't wait! Now, we just need PT and OT on board, and we'll be set. Grace's preemie pal, Bree, is finally sitting up on her own. Yeah Bree-Bree! We're good friends with her family and I know they've spent hours working on this obstacle, and Bree is so proud of herself. Hopefully she can teach Grace how to do it! Then the girls will really be able to play together.

I think that's all for now, I'll update more once we have therapy. Blessings to all!

9 Months Already!

2009-09-30T06:44:00.004-07:00

Papa & Grandma (My dad and step-mom from Wisconsin)

The Marchese Family

Ms. Flirty Diva

All Attitude

Happy Halloween!!

A week for mommy... quiet for baby....

2009-09-24T08:30:00.003-07:00

We survived our 1st round of visitors! We had a great time with them, but we were exhausted and needed to clean and tidy before round 2! This week has been pretty benign for Grace- we did a Mic-key button change, which I expected to be far worse for her, but minimal tears and screaming. Since Grace's appointments are slowing down (until the cath, I'm sure) I've decided to focus on mommy and daddy's appointments. I cannot tell you the last time I went to a doctor or a dentist, for that matter! So, this week I visited my primary care doctor and Felix and I both visited the allergist and dermatologist. I also made an appointment to get my carpal tunnel looked at. I visited LensCrafters too! I feel like I've accomplished quite a bit, which is a nice change! :) The primary care doc isn't my favorite person, but since he was on vacation, I saw an even less desirable doctor- yeah for me.... NOT! He seemed to think all was well, but I scheduled a full physical for next month, just to be sure. I'm not too worried about much, as I did the BRCA (Breast Cancer gene test) this past month and it was negative- THANK GOD! Too many women on my father's side of the family have lost their lives, their breasts and their ovaries to this awful cancer! So, I hurry up and wait on that. I scheduled an eye exam too- my new glasses will be here in 10 days! YEAH!! I can see again! Since my dad had/has malignant melanoma, I wig out about the sun, but usually after I've managed to get completely fried or burned. So, to reassure myself, I try to see the dermatologist once a year or so. Felix actually has far more moles than myself, so typically he's the primary patient at these appointments. This time, it was bad news for me. I guess that's what I get for gloating.... I left the appointment with two sets of stiches and a follow-up in 2 weeks to have them removed. Boo! The back mole doesn't hurt, surprisingly. But the one on my upper thigh is still bleeding and hurts like, well, I won't say because it is not "child appropriate". I'm still stuck in insurance appeals hell, but I am expecting it will stay that way for some time, so I'm getting used to the constant phone calls. Basically, Grace was added on to our private health plan at birth, before we knew about her heart condition. Because of the adoption situation, when they learned of the health condition, she became a ward of the state, until we could go through an agency, thus the bills became the state's responsibility. Unfortunately, the state won't pay because she had "personal" insurance, my personal insurance won't pay because they weren't responsbile... it's ugly! But, I'm working on changing her eligibility date, so this should all fade away soon. I hope. It better!

I mentioned that we needed to tidy up for round 2- well, my house is actually worse than it was! Felix decided that he should start a million and one home improvement projects this week (actually last night!!!), so I have new vertical blinds laying on my living room floor, a new garbage disposal installed (a "green" one), a new faucet installed (a pretty rubbed bronze one to match my kitchen), and a casualty of Felix's somewhat shoddy skills- he busted a pipe on our reverse osmosis. So, hopefully that will get fixed this week so that we have clean, fresh drinking water for our family, and us too! While Felix spent time home improving, I spent time baby improving! My mom and I visited Babies R' Us post eye dilation yesterday (that was a challenge, lemme tell you!) and stocked up on baby goodies. I'm not loving her Chicco KeyFit 30 car seat anymore, she looks really cramped. I wonder what it would be like if she wasn't so small- would she even fit @ 9 months? Seems like a wasted purchase, now. I tried a few convertible car seats, but decided I needed to do more research before spending the money. The Alpha Omega Elite was comfy, but didn't have the latch system for rear facing. I'd like Grace to rear face until age 2, if possible, so that's pretty important. The Britax Boulevard consistently gets rave reviews, but it's so expensive! Someone mentioned the Evenflo Triumph Advance too, it's like buying a new car, way too many decisions! Any mommies out there care to reccomend a convertible car seat model? I need it to be roomy, safe, and have the ability to latch for rear facing. While there, we tried the Bumbo alternative, Bebe Pod. Grace STILL isn't sitting up, so we're trying to get her playing in that position as much as possible. The Bumbo always seemed a tad uncomfortable, but the Bebe Pod seems much better. Grace actually picked it out! :) We sat her in it, and a HUGE smile came across her face. She was instantly playing and babbling, and her feet even touched the ground, instead of sticking straight-out caveman style like they did in the Bumbo. Despite Grace not sitting up, she's getting WAY too big for kitchen sink baths, and the shower always makes me nervous- she's so slippery! So, I bought the bath seat. I'm hoping this too will help encourage her to sit more, as she can play in the bath tub. I bought a bunch of other random toys and gadgets too. Now I'm on the lookout for a 65 cm (?) exercise ball for Grace. Our amazing PT @ PCH showed us some cool activities we can do with her using the ball. AJ even got her to stand for a bit! On that note, Andrea reminded me to update you all on her evals with the state. Early Intervention came back out and re-eval'd her. This time, I made it very bleak. If she didn't do it consistently, it was a no. After all was said and done, with my bleakness, her average age developmentally according to them was 2 months. Granted, AJ thinks she is more age appropriate (and she probably knows best) but, at least we qualify for services now! Grace is officially DDD eligible. This means we'll get services at the house- PT, OT, speech and feeding. AND we'll get respite hours! We have like 250 now, but we'll go up to like 800 something. I doubt that I'll use them, as my mom usually watches Grace, and the idea of having someone watch Grace that is a stranger gives me the heebs.... But I've got them, just in case!

My dad and step-mom come into town Saturday morning, while my aunt & cousins come in Friday night. I'm looking forward to seeing them all- my aunt and cousins I haven't seen in years (5 maybe?) and they've obviously never met Grace. My dad and step-mom have never seen Grace outside of the hospital, so I'm excited for them to get some good play time in with her. They're thinking about celebrating a mock 1st birthday for her, since they won't be able to come out for her celebration. Of course, I'll make a cake- my dad is wanting to taste my crazy creations, so I suppose I can manage. I'll post a post of just cakes for you soon- someone asked me to do that. I've officially closed the business at this point, now just making them for friends and family. With Grace's health issues, I am simply not reliable. I have no idea when we'll end up in the hospital, or for how long. Not fair if you're dealing with a bride, or even a special occasion.

Well, I'm off and running again- Grace is ready for a big girl bath (her 1st one!) wish us luck!

Busy as a Bee!

2009-09-18T20:55:00.005-07:00

It's been far, far, far too long (a week!!) since my last post. We've had a crazy, busy week with family visiting. My aunt & uncle came out to meet Grace from California. They were only going to stay through Thursday morning, but we all had such a great time that they decided to extend their trip (plus they wanted to be here for Grace's cardiac cath)! They'll be going home tomorrow afternoon. We've done a lot and had fun- we've done the Yardhouse for my aunt's birthday, a trip to Sedona, Felix got in 2 rounds of golf with my uncle, my mom and I got new hair do's, and we celebrated Felix's birthday this evening. He was spoiled with gift cards and bought video games- typical guy! He got Madden NFL 10 and Tiger Woods PGA Golf Tour. As I type, him and my uncle are nerding out, boy-style, on the couch with beer. Gotta love it!

During this week we were told that we couldn't have our cath on Sept. 3oth as planned, but instead it was supposed to happen today! Yesterday we got a call that our cath was cancelled to make room for an emergency procedure for a baby. We are rescheduled now for October 1st. My understanding with this cath that we would try to balloon her pulmonary arteries, possibly stent them, and if needed, open her up to patch her PA's, and while they were in, replace her conduit and close her VSD. I panicked- true heart-mom style. ;) Since the word "transplant" had been mentioned, I wondered why we wouldn't just go ahead and eval her for that, checking to see if she was a candidate. It made sense to me- why do 6-7 more surgeries, when we can do 1 major one and have a (somewhat) normal life, before she's old enough to remember much more... I talked to Dr. Shah (her cardiologist) about it. She is not a candidate. He thinks that our next surgery, cross your fingers, will happen when she is 2-3 years old, and if we're super lucky, maybe even when she's 5 (we won't know more until after her cath). Beyond that, we're hoping to get her to junior high age before the next and then adulthood... So, if the transplant were to be an issue, it would be in her 20's or 30's- which would hopefully mean there would be more hearts available. I feel much, much better about this- I really expected that we would be rushing from her cath directly into surgery- not fun! Especially since Felix is scheduled to spend the next 4 months, off and on, in Hartford, Connecticut. He'll miss her 1st Halloween, her 1st birthday... so sad!

Here is Grace with our good friend's daughter, Hannah. Such cute girls!

We met with her pulmonologist this week too. She's still off oxygen, and we got the official okay to discontinue it completely (until the cath, at which point she'll be ventilated, and we'll probably come home on oxygen again... neverending oxygen madness!). She's officially part of the asthma clinic now, which also means she qualifies for the RSV vaccine again! Woo-hoo! We've got a few more scripts on board now with the asthma diagnosis. In addition to her flovent, she'll get albuterol as needed and prednisolone as needed. I'm hoping this winter will be smooth for us. I'm already beginning to quarantine her away from other kiddos. I'm also asking anyone who smokes to please wash your hands very, very well, clean your mouth, and change clothes before coming into contact with Grace. I sound like crazy mom, but, well, I guess I am! :)

We'll be missing our good friends' 1st and 2nd birthday party tomorrow because of this. ;( Bree will be 1 and Riley 2. They're sisters and Bree is one of Grace's preemie pals. Can you believe Bree was only 1 pound @ birth?!? It's amazing how far these girls have come!

Grace's 1st birthday is around the corner- December 1st! I think we'll have a get-together here at the house, and just be really careful and have TONS of hand sanitizer on hand! I'm thinking a fairy garden theme- maybe a whimsical toadstool with a fairy on top of it. I am in search of some creative wording.

This month continues to be crazy, but in a good way. We have lots to celebrate- and we're very thankful for that! My dad and step-mom come to visit next week. This will be the 1st time they'll be seeing her out of the hospital, but their 3rd visit since birth. My aunt and cousins will be coming too, so they can visit with my parents and meet Grace. The day after my family leaves, we'll be doing her cath. We'll spend the weekend in the hospital, and then come home. The next weekend is my mom's birthday, and then Felix will get ready for his 8 weeks in Connecticut. Poor guy!

I can't believe that the holidays are quickly approaching! I'm desperately trying to find an outfit for Grace for Halloween, but everything is either too big, too baby-ish, or too hot for her. Ideas?

Well, that's it for now- we get our 1st Mic-key button change this week, and we meet with her pediatrician and gastroenterologist too. What a week...

Blessings!

A Wonderfully Boring Week...

2009-09-11T07:30:00.004-07:00

This week, including the past weekend, was one of those picture perfect, wonderful, boring, fabulous weeks! After spending so much time in the hospital, all I wished for was this kind of week. We spent the holiday weekend with family & friends- BBQ'ing, swimming, playing games, etc. This week Grace and I made time to get out of the house- wandering around Target, Barnes & Noble, and Bed, Bath & Beyond. I figured we would get it out of our system before RSV season rolls in. I've been working on a cake this week for a 16th birthday- an old Hollywood glamour themed cake- too cute! Felix has just been working, and working, and working, and working.... Poor guy! He is completely swamped in claims! His birthday is coming up just around the corner and Grace and I bought him an early present- Rock Band Beatles. I think we'll also be getting him his very own Kindle soon, so he stops stealing mine! :)

I follow lots of heart blogs, and of course, friends and family's too. I was moved to tears of joy yesterday reading that Paul Cardall received his heart! Thank God! Please pray for his family. He had been waiting over a year for this precious gift.

I've been in spring cleaning mode, or something. Yesterday I tore apart our kitchen and re-organized EVERYTHING! I think my husband was a bit nuts over it, but the end result is fab. Family coming into town always finds me neurotic like this. :)

Grace is well, no new news- which is a great thing! Today we meet with CT surgery. Not sure what we're hoping to accomplish, but maybe we'll get off of Vivonex? I'm ready for her to be back on her old formula again. We'll meet with the Early Intervention Program and DDD soon- pray that Grace qualifies so that we can get services in our home. It's very difficult living in the West Valley, as all of the qualified providers are in the Central or East Valley. Having someone come to our home is a prayer come true!

That's all I have to report. Ta Ta for now!

Cardiac Visit

2009-09-04T18:11:00.008-07:00

We survived the first post-surgery check-up! Grace will be having her cardiac cath at the end of this month (around Sept. 30th?) and the plan will be to balloon her very tiny pulmonary arteries, and possibly place a stent to keep them widened.

The stent will be like a chicken-wire tube placed inside to avoid collapsing. Hopefully the widened vein will promote growth further down the artery with the added pressures. Unfortunately, if this doesn't work, of if they're unable to do this, they'll go in for ANOTHER open heart surgery. If that has to occur, they'll place an even larger conduit and close the hole in her heart, just like this last surgery. I asked if we thought if it would be another 10-12 hour procedure like the last, and the answer was hopefully not. Apparently, the last one took longer because of the higher pressures in her heart, so they kept her for monitoring, until they decided to re-puncture the VSD patch. The good news is that her most recent EKHO's show that there is no reverse blood flow, so the VSD hole is unneccesary. Since we would be at 3 surgeries before age 1, my mind went to the worst possible scenario- would we be needing a heart transplant with this much abuse/beating on her chest? Again, not the answer I expected or wanted... but possibly. Apparently, many kids with issues like Grace need to have a heart transplant around the 5-6th surgery. The cardiac team is hoping this would put Grace in her twenties before it would be needed. My mom and I left the cardiologist with a little less spring in our step. We needed time to process the news. A lunch date with dessert was in quick order- off to lunch we went! After a few hours, we processed, and we're prepared with the strength we needed.

We tried an experiment that morning with her oxygen. I took her off as we left Surprise, and 1.5 hours later we were still at an O2 level of 96%. YEAH! Grace is off oxygen! So far, she's maintained her 93-96% sats. One less thing to lug!

Other than that, Grace is doing AWESOME! She's "talking", and this starts about 6 am each morning and doesn't stop until about 8 pm each evening. She is a non-stop babbler! We think we've heard "hi" a few times, but we'll see.... Grace is quite the daredevil. She loves to get tossed in the air, tickled to exhaustion, pretend dropped, pretty much anything that would freak me out!

I think roller coasters will be a daddy-daughter experience, as mommy wants absolutely nothing to do with that! :)

Grace is still working on sitting up on her own. She can manage a few moments unsupported, or sit for an hour with support.

Grace went to her first birthday party this week. We spent an evening at Peter Piper Pizza. I was on germ/sanitizer patrol and I think I about washed my hands off that night! She had fun, and the boys were great with her. Michael loved all of his presents,

and Matt was very protective of Miss Grace.

We still haven't heard anything about the house, but I don't think that is abnormal. Time will tell...

It's a holiday weekend- Yahoo! We have a whole lot of nothing planned. It's Friday night @ the Marchese household, and we'll play with Grace, then probably watch some movies and chill.

Tomorrow will find us with the Frank family, enjoying fajitas. Sunday may find us on a date night... we'll see if we have the energy, or the desire to leave our little princess. Monday will be a day of rest. Perhaps I will place a PJ mandate.. nobody can get dressed or do their hair/makeup, a day of being blissfully housebound.

Make it a great weekend! Cheers!

Back in the Saddle!

2009-09-01T20:37:00.008-07:00

Wow it's great to be home! We came home last week Thursday (mid-day)

and it has taken me until now to finally get back into my groove. Granted, it has been a bumpy ride, but we're here, and we're well, so I'll be thankful. :)

Friday found us with a broken A/C unit. Thankfully, I had a niggling feeling this was going to happen and started a home warranty a month ago. I called and explained Grace's medical condition and they assured me that it would be completed by end of business day. By 6pm, I still hadn't heard and rang back. Again, I was assured that someone would be here by 10pm. At 9:20pm, the technician called to tell me that he couldn't be here until Saturday. UGH! I fought and fought with the company, and thankfully they sent me a credit for my next "deductible". Saturday, we had high hopes when the motor was replaced, but we were warned that our compressor was on it's last legs. The technician couldn't actually repair or replace it until it gave out. How annoying! By Saturday evening, the A/C was down again. Unfortunately, it takes 48 hours to order a compressor, so we suffered through the weekend limping by with 80 degree temps inside. Today, the technician came to repair and it was 87 degrees inside! Grace and I took off to my mom's house. Quite the feat.... I haven't been in my SUV in over a month and a half, and then to have to carry all of her supplies: diaper bag, oxygen, tubing, feeding bag, feeding pump, car seat, stroller, toys, etc...I get the car started, car loaded and then go in to grab Grace. I open the backseat door and discover that my car seat base was in my mom's car! UGH!! I loaded us back up and out, suffered in the dark in the miserable heat and waited for my mom to come and get us. This is when I am so thankful that not only does she live in state, but she lives only a few blocks away- Hooray!

Tomorrow is our first cardiac appointment post-surgery. I am hopeful that things will go well. We've kept Grace on .2 liters of O2 since we came home, despite the fact that we only really need to at night and when she is grunting (working to breathe). With the withdrawal factor, I figure better safe than sorry. She still grunts a bit, even with oxygen, but this seems to be her baseline- she grunted prior to surgery too. Hopefully all is well and we can delay the inevitable cardiac cath for a few more weeks. Fingers crossed!

We've been looking at houses (as if we didn't have enough on our plates!), hoping to buy a 2nd home that is a bit larger and can fit our growing family and our gear. The plan is to rent our 1475 sq ft home to my mother, and we'll buy a 2200 sq ft home for us. Because of the crazy good market, she'll pay our new mortgage (much lower) and we'll still pay our current (much higher). We'll both benefit (hopefully!). We made an offer on 3 homes, all short sales. I am really, really in love with one of them and am hoping that it works in our favor. Thank goodness for a best friend who is in the real estate biz! (Shameless plug for one of my besties- Samantha Napoli.

She's with Powerhouse Realty) Again, fingers crossed!

Today is also Grace's 9 month birthday. It is amazing to me how far we've come in these past 9 months. Our little girl has overcome so many odds, and challenges. We're still a bit behind, but we're catching up quick. Technically, she's 10 weeks younger than 9 months (adjusted age) but according to her birth date she is chronologically 9 months. Yikes! How did it go by so fast? I took a long shower tonight and couldn't help but think about how quickly life goes by. It is so important to take a minute out of each and every day to truly be thankful and relish in the moment. I would give anything to have a child's sense of time. Summers lasted forever when we were kids- weekends too. Now, it's barely Friday and it's Monday all over again... Ah, to be old! :) Grace is chomping, literally chomping, on the biter biscuits. Tasha, Bree's mom (I think I mentioned her before?) suggested them to us and they are the BEST! Grace literally munches on them all day. I think we'll be seeing teeth in the next 2 weeks. My mom swears that Grace has said her first word, "Hi", but I'm thinking it's more of a breathy sigh... the jury is still out. She's imitating us waving- she can wave goodbye to people with her hand. She's almost able to sit up on her own. Standing with support has been out of the question for the past several weeks, and probably for a few more until we are able to pick her up under her arm pits. Unfortunately, post cardiac surgery we can only "scoop" her by the neck and bum. It works- but boy is she getting heavy!

I got her 4th of July shots in the mail tonight. I know it's a bit late, but better late than never, right? Isn't she darling?

This month is going to be CRAZY for us! I have a few cakes, which is a great thing for us financially, but adds to the chaotic weekend factor. I have two sets of relatives flying in two seperate weekends, and I have Felix's and Mimi's (AKA Grammy Pammie) birthdays! WHEW! Unfortunately, the months get crazier and crazier towards year's end. Felix will have to spend 8 weeks in Hartford, Connecticut this fall/winter. He'll go for 2 weeks at a time, with a week break or so in between each business trip. He would love for Grace and I to join him, but with RSV season just around the corner, it's a risk we can't afford. In October/November our little sister (Felix's sister to be exact) will be having her 1st child in Wyoming. We'd love to meet our niece, but again, can't risk the germs on a plane. It's amazing how much life changes when you have kids- your world is so not about you anymore, it's about the little ones. A dear friend asked me via Facebook today, "When did we grow up?" and it's so true- just yesterday we were listening to bad 80's big hair bands and talking about the junior high dance and which boys we wanted to slow dance with...

I'm out of steam and ready to relax with the hubby (he's reading book 2 0f the Lord of the Rings trilogy on my Kindle). G'Nite!

Hospital Psychosis

2009-08-26T12:16:00.006-07:00

I often wondered how mailmen could go "postal"- I mean, everyone has bad days once in a while, but to go postal? Well, folks, I'm officially there! I am sick and tired of being in this hospital. Yesterday we were told that we would be going home today (Wednesday), so long as the chest xray and blood results came back. So, being optimistic, we packed, and cleaned the Ronald McDonald House Room- Felix moved our stuff out... and here we are- still @ the hospital! UGH!! The nurse came in with a weird expression on her face, so I simply asked if we were going home. She deflected to the doctor... that means no, obviously.

Apparently, her chest xray looks fabulous (I didn't expect any less!) and her blood results were great too, but they're worried about the withdrawal factor. To that I say- SERIOUSLY?!? SERIOUSLY!?! I've been telling them for the past week that I thought much of Grace's symptoms were withdrawal related.... Whatever! Here's the story... Grace was on loads of meds (dex, ketamine, fentanyl, vercet, morphine, etc.) and we went home using ativan and methadone. Using the original weaning schedule, we would have completely stopped all meds yesterday. Instead, upon admission they increased her meds from 1x per day to 4x per day, and still stopped her meds- 3 days early!! Of course she's in withdrawal! So, I've got a cranky kid on my hands, but once she gets ativan- Gracie's back! Last night in the middle of the night we hit a rough patch- Grace couldn't make it 2 more hours (she gets it every 6 hours, as needed) so we had to use an alternate medication... that was @ 1 am. Because of that med, we're not going home today. Do you think they told me that this morning? Nope... early day? Nope.... noon! After I'd spent all morning packing!! We'll still be back in a few weeks for her cardiac cath procedure, so this really is quickly becoming our 2nd home. Felix and I joke that we should make an offer on a room @ the Ronald McDonald House and just move into it...

She's back on methadone now 1x per day and the ativan 3x per day. She's currently doing the can-can in bed, giggling and smiling. So great to see my baby back! We did an EKHO here today so that we can have a post-op baseline, and now it seems as though we can postpone the cath a bit longer (maybe a month or more?).

Someone sent me an interesting article today about PTSD that follows families from the NICU. I think any parent that spends a good portion of time in the hospital can relate- check it out:

http://well.blogs.nytimes.com/2009/08/25/for-parents-the-lasting-trauma-of-a-sick-baby/

Grace is back on oxygen, occasionally. She'll need to be on while sleeping and when grunting. Since the hospital can't monitor us 24x7 (isn't that their job? I'm just sayin'....) they're keeping it on her full-time now.

All in all, this hospital stay has been a 5 out of 10 at best. I don't feel like we accomplished much out of this stay, other than accumulating a few more diagnosis'. I did have great friends and family that kept me sane and sustained during this stay. Mark & Kelly brought me lunch, snacks, a case of Dt. Coke (my vice!), 2 cases of water, and offered to mow our lawn. Joy and Jerry brought us paradise bakery- a yummy salad, a few sandwiches, cookies, drinks.. it was fab! Tiff Deacon brought us a rotisserie chicken for dinner, some snacks, fruit, drink mixes- life saver! By the way, the drink mixes went awesome with Mark & Kelly's water cases. :) Maren and Deborah are helping us transition home with more Paradise. The BEST friends ever! Mom & Pam have brought loads of clothes, washed loads of laundry, have done Starbucks runs, candy bar runs.... the list goes on and on. I can't believe it's been 5+ weeks since we really have been home, save for our 4 day mini-trip back to Surprise.

YAWN! What a day... hopefully home tomorrow! XOXO

2009-08-25T08:59:00.003-07:00

So... here we are. We are up on the 4th floor in the "telemetry" unit- basically, they can watch her heart and vitals up here. We came up around noon-ish yesterday and got ushered into a room where we were told we would be sharing with a surgery patient. At about 5 pm, the patient came out of surgery and was howling- literally howling! Grace had been ultra fussy all day, and that put her over the meltdown cliff. I had a word with the charge nurse and we were moved into a private room. Thank God! This room is as cold as the arctic, but since I don't have a kid howling, and we're not sharing germs with other kiddos- I'll take it! Grace did well through the night. We're sharing the big bed with her (thanks Andrea!) and she snuggled with Daddy until about 6:30 this morning. We were told that her heart skipped a beat really early, but other than that, she looks great. It seems as though the cath will be delayed for a few weeks, probably sending us home in the next few days, and then bringing us back in a week or two. She is down to .1 for oxygen, and they're hoping to wean her completely before we go home. Woo Hoo! :)

Every day we spend here I become more tired, and less patient. I'm exhausted- emotionally mainly, but just plain tuckered out. Poor Felix, he comes home from work and I make him spend time with Grace- only because I need a break! Poor Felix never gets a break. Food just came in- so I'm off to eat some breakfast- yummy!

Ta Ta for now!

Watch & Wait

2009-08-22T14:21:00.005-07:00

We're still in the holding pattern that I call "cruise control". Grace is just chillin', waiting for the next thing to happen.

The lung test results came back- absolutely nothing wrong with her lungs. This is good news- this means no aspiration, no infection, no TB... but this means it is cardiac related. Isn't everything? The plan is to do the cardiac cath on Wednesday morning with Luke Lamers. I LOVE Dr. Lamers- great guy! And he's from Wisconsin, so of course he gets extra special honors. :) I call him "Cardiac Man"- it's his super hero name. His name is so Lex Luther-ish, don't you think? And he's VERY tall and thin, and very funny. I guess I have a mini heart-mom crush on him, since he really rescued us our past stay here. I think he would laugh at me if he knew that.

Dr. Lindblade came in today to explain where we're at. Apparently, the pressures in her right ventricle are higher, but no higher than her left ventricle. The reason they're high is the Pulmonary Arteries that branch off the heart are super tiny. Every heart surgery Grace has had, they've patched these arteries trying to make the thicker and wider, but they still remain pretty tiny. Ballooning could be an option, but the problem w/ ballooning is, they'll only balloon a tiny portion, and then it goes back to being skinny. Apparently 3 months post cardiac surgery is when optimal growth occurs- we're only 3 weeks, so they don't expect to see much. They are going to try to clamp the collateral arteries, if they're present. Here's my analogy for that: Imagine a main freeway, with a lot of little side roads and routes surrounding it. To avoid traffic, people might take those side routes, keeping the main freeway somewhat less congested. In order for the city to warrant widening the freeway, they would need to see more traffic, so they have to shut down the side roads to encourage growth. Make sense?

Grace is back to herself again- we've been enjoying holding her and tickling her. She's gotten cuddled by Oma, Mama and Daddy.

The Ronald McDonald House gave us tickets to the Cardinal's game tonight. Felix and I are going to try to sneak away for a bit and enjoy ourselves- I think it's important to recharge ourselves and try to have some normalcy, despite the situation.

So, back to the heart of the matter- HA! Get it? The "heart" of the matter? I crack myself up sometimes.... The cardiac team will meet on Monday during conference to decide if we'll cath this week, or 3 weeks from now (the thought is that if they decide to balloon, they have to wait until 6 wks. post surgery...), but most everyone thinks the cath is neccesary to coil off those "side routes". So- we're here until Tuesday, at least. They're trying to wean Grace off of the oxygen, but she's not having it. She's still on a low flow machine (Poor Man's CPAP), and at 5 liters @ 50%. They tried to go down, but she lost her oxygenation and was working pretty hard, so the team bumped her back up. The problem- we can't go home until we get back to the wall.. which is quite a weaning way away.

We Love the Hospital!

2009-08-21T17:26:00.004-07:00

Sunday the 16th of August was the best day Grace has had since we had come home from the hospital. She was smiling more, acting more like herself, puking less and breathing less quickly and with less effort. We went to bed excited to have our little girl back. Unfortunately, that excitement was short lived. At 1:30 am, Grace woke us up to a blood-curdling scream that wouldn't stop, no matter what we tried. Grace was crying so hard that I swore she must have gotten stung by a scorpion or something worse. After, I worried that her oxygen level was depleting, so we hooked her up to her O2 monitor. Her sats were great, but her heart rate wasn't- it normally is in the 130's and it was up to 200!! She was grunting with each breath, and still very irritated. Worried about her heart, we called the cardiologist on call. The cardiologist could hear her grunting in the background and asked that we come in. Worried about the sick kiddos in the ER, I asked her to pre-check us in. We didn't get to the hospital until 3 am, and her heart rate was still in the 180's and now her O2 levels were suffering. We went onto oxygen and got admitted into the ICU.

Days went by with test after test. They tried blood tests, swabs, rectal swabs, moving her chest tube, unclotting her chest tube, stopping her feeds, starting her feeds, switching her meds, increasing her oxygen... NOTHING! They did EKHOs, EKGs, CT scans of her whole body, Xrays... NOTHING! Finally, they decided to do a surgical procedure that places a scope down her lungs and belly for a tiny biopsy, and then also a spinal tap. We expected to hear that Grace's belly was ill- maybe ulcers or something. Instead, we found she has a nodule on her vocal chords, blood in her lungs, and a moderate to severe floppy windpipe. The windpipe is narrow, so she likes the oxygen to keep the tunnel "pushed" open. The blood in her lungs may be heart related. They're planning on doing a cardiac catheter procedure to take a look at her arteries. The thought is that her pulmonary arteries are too small, creating a very high pressure system in the right side of her heart. The pressure creates swollen lungs, and swollen liver, which creates blood when irritated. I'm hoping that we're not looking at another surgery- I'm hoping whatever it is, that they can fix it in the Cath Lab.

So, another 2 weeks lost @ PCH... We have officially spent 1/2 of Grace's 9 month life in the hospital. Thank God we like this place!

Meet the Team

2009-08-21T15:55:00.006-07:00

I figured that with as often as we are here at the hospital, I should include a photo directory of who's who.

Grace's Cardiologist: Ashish Shah (AKA Doogie Howser)- He looks so young, but he's really a great, intelligent doctor. I LOVE his bedside manner, and he's really funny, which helps more than most people realize.

Grace's Cardiac/Thoracic Surgeon: Jeffrey Pearl- Dr. Pearl didn't do Grace's 1st surgery, but he did the "BIG" surgery and will most likely do any further heart surgeries that she'll have.

Grace's Pulmonologist (lung): Rupali Drewek

Grace's Gastroenterologist (stomach): Dana Ursea

Grace's Pediatric Surgeon (general surgery needs): Kathleen Graziano- she's married to one of the cardiologists in the practice that we see sometimes, Joe Graziano.

The PCH team is great- we're blessed to have such caring people so close by. As much as we daydream about someday leaving this climate, the idea of leaving this hospital keeps me close by.

Recovery

2009-08-10T17:06:00.000-07:00

Sitting in the hospital watching and waiting for healing to happen is painful. It's neccesary, but painful. Sitting in this room for 3 weeks would make anyone go nuts. Grace is slowly, slowly healing. Tasha, a friend of ours that we met in the NICU, came to take some photos of Grace's healing process.

She brought groceries for us (we had an apartment @ the Ronald McDonald House), a candle, a wind-up ladybug and a card from her family. Her oldest is just barely turning 2, and can't say Grace, so she calls her Baby "Geese"... of course we got a card wishing Baby Geese well! :)

We make the best of our time here,

trying to fill it with constructive things to do- helping friends plan their wedding day, filing taxes, paying bills, designing websites, reading our Kindle, text messaging, napping, watching way too much HGTV and holding Grace (of course!) as allowed.

Felix had planned a party for my 30th birthday, but it was before we knew about Grace's surgery. Instead, we had our friends meet us for dinner @ the Yard House and we celebrated with them.

It was nice to get out of the hospital for a little bit- and the cake was yummy!!

As always, and I don't say it enough, we are very blessed by our friends and family. The support you provide us really does sustain us. We feel guilty that we are in a position to be so needy of thoughts and prayers, but cannot wait until we can pay it forward. That being said, we NEVER wish any experience like this on any of our friends.

Who Are We?

2009-07-30T11:26:00.000-07:00

Found this on a Congenital Heart Defect website.... Great read from Grace's perspective!

So who are we?

We’re 1 out of every 120 people... there’s a new one of us every 14 minutes. We are both genders and we are all ages. A million of us are adults, and about 800,000 of us are children.

We’ve made it through surgeries, hospital stays, infections, Endocarditis, pacemakers, and Heaven know what else. We’ve given gallons of blood, one vial at a time. We’ve fought back against tremendous odds. We’ve been so sick that we’ve scared the world’s best doctors witless… and then amazed them even more when we recovered.

We aren’t related by blood but we are a family. We call ourselves the Cardiac Kids and Heart Warriors. We have an amazing inner strength, but we are terribly fragile at the same time. We know that most of us shouldn’t even be here and so we live every moment as if it is our last. We’ve celebrated our victories and we’ve mourned our losses. Our heroes include a Flying Tomato, a golfer, and a former movie star, because we are them and they are us. Our parents are Heart Dads and Heart Moms, and we consider those titles as Badges of Honor. They deserve it; they were the first ones to discover that a heart defect doesn’t just break one heart... it breaks three.

We work, we play, we pay our taxes and we live our lives. We’re in your community, in your church, in your school, in your office, and quite possibly in your home. We move a little slower, do some things a little differently, but we usually get along without causing a fuss.

We are people living with Congenital Heart Defects.

Hell

2009-07-30T11:25:00.004-07:00

Hell.... that's how I describe the past 30+ hours.... Hell.

I never, ever again wish to relive the experience. Hopefully, we won't have to- obviously there will be more surgeries, but nothing quite as bad as this one (hopefully!!).

Yesterday started out fairly normal. We had a VERY hungry and cranky child who was waiting for surgery. As surgery time came closer and closer, she became crankier and crankier- requiring more and more sedative to keep her calm.

The surgeon had come in the day before to meet with us and explain the "ideal" procedure and the potential risks. Even still, nothing prepared us for what was to come. Dr. Pearl explained that he would be opening the chest, dissecting away any residual scar tissue, and would then be able to determine what size conduit he would be able to fit into her chest. Essentially, the conduit is an animal-type artery that connects from her heart and branches to connect to her pulmonary arteries. He was hoping to be able to get a 16 mm conduit, but would settle for a 14 or 15, if necessary. Dr. Pearl explained that he would place a patch over the hole in her heart, working from the hole where the conduit would sit. After the patch, he'd attach the conduit, take her off bypass, and send her to recovery. Simple enough, right? Of course, there were risks- the patch might have to be punctured to even out the pressures, which is normal, and it would be possible that her electric conduction of her heart could be off after surgery, as the patch sits right on the conductor tissue, meaning she would require a pacemaker. This would be very, very rare. Even more rare, she could eventually require a heart transplant. Dr. Pearl was almost positive he'd be leaving her chest open (open sternum) to wait out the swelling. We agreed, asked a million and one questions, and sighed with relief as we prepped for the next day @ 12:30 pm.

My dad flew in from Wisconsin. Thank Goodness he was able to spend some quality "normal" time with Grace before her procedure. The two of them are just precious together- and both STUBBORN!

We all spent some time with Grace before she went for surgery. We got her to laugh, smile and even cry with all of us. We were all very emotional. I love this face! Grace is pouting, while my dad is grinning ear-to-ear. Priceless!

Approximately 1 hour before surgery, the anesthesiologist came in to meet with us. Grace has had a ton of anesthesia procedures, so I expected to recognize or even know the doctor, but no... nothing. I had never seen this guy before. Not that it means something terrible, it just bumped my anxiety level a little higher. We also met with the nurse who promised to meet with us every 1-1.5 hours. We were nervous, but eerily calm. We walked her down the hallway to the OR and said our Godspeeds.

Then it was time to wait.... At 3:30 (2 hours after surgery was to begin) we still hadn't heard anything. Angie, the RN, had promised to update as before surgery started, before bypass started, when bypass ended, etc. Nothing.... I thought, okay, no news is good news.... and then my curiosity got the better part of me. I went into the NICU to see if any of my connections could get a status update for me. Luckily, they could. Surgery had begun, bypass had begun, and she was stable. Whew! Huge sigh of relief. We didn't hear anything again until a cardiologist came out to check on us. We advised him that we hadn't heard ANYTHING other than from the NICU and he went in to the OR to get us some info. Apparently, after dissecting her, her pulmonary arteries were too tiny to be able to handle the pressures of blood flow with a conduit, and Dr. Pearl was considering just replacing her shunt with another bigger shunt, and waiting 6 months-1 year to surgically do the full repair. My heart sunk into my chest. I tried so hard to not be dissapointed- obviously, I wanted what was best and safest for Grace, but I also wanted to have a "real" life with her. Felix and I had talked about trips to Sedona, flying in an airplane with her, seeing our families, etc. None of that would be possible with just the shunt. It was like all this drama for nothing, well, something, because her old shunt had failed. They told us that if we would have caught this sooner (not "we" but we as a team) her shunt wouldn't have failed so miserably, and her collateral arteries wouldn't have grown, thus competing for blood supply with the pulmonary arteries, causing them to have stenosis, or narrowing. The worst part, Grace wouldn't have needed bypass for just a shunt procedure, and she had already been on bypass for 2+ hours at this point. Another 2 hours went by and the same cardiologist came by to check on us. Again, we advised that he was the only person truly keeping us up to date. He went back into the OR a 2nd time to get the status. Dr. Pearl had went forward with the full repair- and only after he finished would we know if it was the right decision, or if he'd have to tear it all down again and start over. We waited, and waited, and waited. Finally, a charge nurse came out to let us know that they had been able to put in a 12mm conduit (4mm smaller than they had hoped for), but the pressures on one side of the heart were too great for her little body to handle. They had attempted to take her off bypass, but had no luck. They decided to punch a hole in the patch where the closure was, allowing the blue and red blood to mix, thus creating an equal pressure in both ventricles until her body grew used to the new processes. They were hoping this would work, and if not, they would be tearing down the conduit and replacing the bigger shunt, another 4+ hour procedure. Literally, I was dying waiting for these updates. At 10:30pm (9 hours after surgery began) we were told the surgery seemed to be a success. They were able to keep the conduit with the hold in the patch. They would be doing OR EKHO's and EKG's to make sure everything looked good and then taking her off bypass, and bringing her to recovery with an open sternum.

The rest is all sort of a blur, as I was massively anxious, tired, sleep deprived, emotional, etc. I literally felt like a MAC truck had run me over, and over, and over, and over again. Grace was off bypass succesfully, doing awesome, and Dr. Pearl was able to close her sternum, but was experiencing more bleeding than he was comfortable with. He gave her plasma and platelets until he hit her max, and then gave her something called "Factor 7"- I guess it's a last ditch resort to stop bleeding... some crazy miracle drug that is very expensive, and I'm told my insurance company will probably be sending me hate mail.... There would be no telling if the Factor 7 worked until 6-8 hours post surgery, and if it had not stopped, it was possible that another operation would be performed to control bleeding.

It's now 12:30 pm on Thursday (the day after surgery) and approximately 12 hours post surgery. The bleeding is good, Grace is good, and all is well for the road to recovery.

Grace is ventilated, and will be for another day or two, but she's healthy. She keeps kicking, doing aerobic moves in bed, which isn't good- but shows she is feisty, and ready to be done with this. Unfortunately, the more she is active, the more CO2 and Lactic Acid she accumulates, meaning the longer she'll have to be ventilated. Luckily, after trying seriously 6 sedatives in tandem, they've found the combination to calm her. Every now and then she still twitches or kicks, but her blood gas results are getting better.

The doctor and surgical team just came in while I was typing this last sentence. Changes again, she's doing well, so they're decreasing her ventilator support while increasing her sedatives. Essentially, they'll give her less help breathing, but more sedation to keep her from fighting it, creating more buildup of CO2 and lactic acid.

Why do I know these terms? I scare myself some times.... I'm a heart mom, though. Through and through. I've undergone baptism by fire, I suppose. It's funny, people comment about how they can't imagine going through something like this with their little one and that they wish I would be able to have a healthy child experience, either with Grace or my next. However, to me, this is ALL I know- I wouldn't know what to do if I had to bottlefeed every few hours, or what to do if I didn't have a huge medical team that will answer my every question, thought, and even let me propose potential treatment ideas. This IS my life, and I'm really okay with it. To be frank, it really does frighten me more to think of what it would be like to parent a "normal" child...

Well, I'm for a nap- I've been up WAY too long with WAY too little sleep...

Surgery Waiting Period

2009-07-27T11:24:00.000-07:00

Grace has been doing so well these last few nights, really holding her own. After all the trauma and drama of the first few nights, I really expected a true emergency surgery situation. However, Grace is now down to 2 liters of oxygen, from 3, and is satting in the high 80's continuously. She's still on a strong sedative drip, but it seems to work well.

We were told surgery would probably be Wednesday, but no one would give us a clear answer. Everyone kept saying that we would have to wait for the cardiac conference Monday morning to find out exactly... so we waited, and waited, and waited and waited, and waited.... until 5 pm and I could take it no more. I walked up to the surgeon and begged him to give me a day or time, to which he answered nonchalantly that it would be Wed. afternoon most likely. He acted as if we should have known this all along... UGH! So, we're thinking Wednesday, and if it changes, I don't care anymore. I cannot spend my sanity stressing over this!

My father is flying in to be here with me tomorrow evening. I'm looking forward to a really big hug, and a reassuring voice from him. I told my mom tonight that they were obviously both my parents, because when I'm stressed out to the max, I need both of their perspectives, both of their voices, both of their hugs- they make me feel safe, and home, which at this moment, I really need!

I've had a hard time with this hospital stay, and I feel bad, because I'm such a people-pleaser. So many friends have asked if they could be here to support us during the surgery, or even come visit before or after, but we've been turning everyone away. This breaks my heart!! It's just so stressful and busy for us, we're just trying to stay low-key, and keep it quiet. Plus, when others visit, we feel the need to entertain, which we know is absolutely not the case, but we feel guilty if we're ignoring our friends.... such a conundrum! After the surgery will be bad too, as we're having to stay away from those who have kids, especially those in daycare. Any sickness, especially as we drift into RSV season, is life-threatening post heart surgery. So, we begin our months as loners again, until Grace shows us she's ready...

I have spent every night on the hospital couch- so very uncomfortable! Two nights ago we were able to secure a room @ the Ronald McDonald house off campus, but since it's a good 10 minutes away, I chose to stay with Grace. Last night, I was almost going to switch with Felix, but since we're in such a bad, scary neighborhood, I thought it better to let Felix go there. Today, we were SO LUCKY! We got transferred to the campus house, and were blessed to get an apartment!! This means we can eat and cook in our room- yee-haw! That rocks, seriously. I cannot tell you how awkward it is to come back to a house full of strangers, sit down with them, especially after a difficult day, and eat dinner. In the regular rooms, food and drink are not allowed- which when you're on the 4th floor, is pretty awful.

I'm really looking forward to a good night's sleep tonight- I really need it.

So... care packages! So many of you have asked what we want/need.... We don't need them all at the same time, in fact, we would benefit greatly from them continuing to come after we've come home.

Ideas:
Dinner (Once home)
Movie Rentals (Once home)
Lending us TV show DVD's or Movies
Snacks
Drinks
Meal Ingredients
Magazines
Crosswords, Sudoku, etc.
Gum
A friendly text message
A sweet note
Be creative- we love even just hearing from you!

On the day of the surgery, we're asking for patience from friends and family. It's going to be a LONG procedure (4-6 hours) and it will only stress us out more to get text messages and phone calls asking for updates. We will update everyone as soon as we can, and as soon as we know. Remember, we're waiting to hear too!

Keep praying, if you're religious. Keep thinking positive thoughts and sending them our way. Light a candle for Grace. Hope for a speedy recovery.

I will update more as I know, but I really want to thank everyone for the continued outpouring of support, love and prayers.

Strength- Come in a Bottle?

2009-07-25T10:40:00.000-07:00

It's only 9:30am, but it's been one hell of a morning. Last night, Grace continued to have a hard time- we weren't sure if it was because she was coming out of sedation from the cardiac catheter, or if she was ultra dried out from the oxygen, or just over tired, but she would not stop rubbing and itching her face while screaming. At about 4:30am, I told Felix that if I didn't sleep, I didn't think I could go on- I had maybe gotten 2-3 hours of sleep per night since Wednesday. (Felix got home about 8pm yesterday evening) We were sharing a small couch in the hospital room, making the best of awful living accomodations until our room at the Ronald McDonald House was ready this morning.

I don't remember anything beyond that (blissful sleep!!!), but I woke up to many people in her room around 7 am. We were informed that Grace had been de-satting (basically not getting above 75% oxygen) since about 5 am, and was becoming more irritable. They were planning to sedate her to keep her calm, stopping her feeds, and moving us into a surgery observation room- and the kicker, be prepared for surgery to happen immediately if necessary. We frantically called family asking if they wanted or needed to be here, called airlines, threw our clothes into suitcases, cried and carried on.

Getting to her new room, the surgeon came by to talk with us. He would like to put in the largest conduit possible, so that Grace can avoid the next surgery for as long as possible, giving her room to grow. Unfortunately, since Grace's condition is somewhat rare, the hospital doesn't keep a supply of conduits, so we are having to wait on "Grace's parts".... she's like a foreign auto, I suppose? Surgery, if possible, will be dictated by that date, but is looking more and more like Wednesday of this coming week. The plan is to continue to sedate her in hopes of keeping her calm, but if that doesn't work well enough, they'll ventilate her and basically put her in a pseudo-coma, until surgery arrives. They really prefer not to do that... so, if it gets bad, they may bump another kiddo from the schedule and fit us in.... So, essentially surgery is between now and Wednesday, and so we wait....

It's tough going through all of this, not only for us, but our family & friends too. So many of you want to be here for us, and I love each and every one of you for it, but it's extremely difficult. They only let family into the recovery room (which becomes our room after), and with the prospect of Felix's mom or dad coming out, and my dad coming out, that leaves little room, as my mom and Pam are already here. I love that everyone wants to be here, and hug me (I need them so badly!) but I refuse to leave her.... So, please pray for us, love us, and even send us virtual hugs. Visiting with us at the hospital is probably a non-option for the next week or so, but feel free to call, email, text, and even drop by care packages :)

I have a hard time explaining how I feel about this next procedure. It's truly bittersweet. Any parent hates to see their child in pain, so the before and after of surgery is hell.... but knowing there is no viable option but surgery, and knowing the opportunities that allow us to be a "real" family after surgery, help get me through all of this. This surgery is so much different for me than the last one- I don't seem as frazzled, but really, inside, I'm more afraid. I loved her before, but not like now. I try to explain to people, and maybe it's different when you adopt- but I had to get to know my baby, and she had to get to know me. Now, she knows my voice, my touch, and I know her likes and dislikes, how she likes to be touched, dressed, etc. During the last surgery, they had to teach me how to be with her- what touches she would like, etc. and this time around I get to tell them... It's a nice role-reversal, but it also means this surgery means so much more. I hope I'm not making it sound like I would have been okay with complications on the last surgery, because that's not the case- I loved her and needed her probably as much as she needed me, but now, now she's my world. She is my heart that lives outside of my body- she's the reason I get up each day, I smile, I laugh, the reason Felix and I are exhausted, but still manage to look at each other and smile and the reason we know that we're blessed, not burdened, by our little miracle. She teaches us- and we're honored to be able to parent her.

Give us strength.... I may need it.

Two For One Surgery Month @ PCH

2009-07-24T10:19:00.000-07:00

I'm absolutely terrible at upkeeping this site- but I get asked about it so often, I will commit (again) to being better at this. What a few months it has been! Grace is a wiggle worm extraodinaire! She is either upside down, sideways, flipped over or half hanging out of her crib each night. Here she is warding off the paparazzi. ;)

Since Grace's original diagnosis and surgery, we have been told that Grace would be developmentally delayed. After visiting the neuro-developmental specialist (I think I blogged about this a while back??) we wer

e told she may never hold down a job, low IQ, etc. etc. We were referred to a neurosurgeon regarding her lack of head growth. Great news!! Her head grew like 4 cm from the one visit to the next and the brain MRI shows that everything is in working order and doing well. In fact, the surgeon actually informed me that on Grace's 5th birthday, I was to take her back to the original doctor and let her throw spit-balls at her! HA!! Take that, fancy pants doctor. :)

4th of July was a wonderful day spent with good friends and family. We celebrated Auntie Blair's 29th birthday with swimming, tons of food and lots to drink!

We headed towards the stadium

later that day for fireworks. Grace was in awe!

Fast forward to now- she's so smart!! She's talking (not actual words, although we think we hear "hi" every now and then...), kicking, laughing, smiling, playing, engaging, eating applesauce from a spoon- what a difference! She's been absolutely amazing, and if it weren't for the NG tube that has/had been taped to her face, no one would be able to tell there was ever anything wrong with her!

Grace still won't take a bottle- nothing that even resembles a bottle, pacifier or breast- she wants NOTHING to do with anything of the sort. She will, however, take food by spoon in very small amounts. I had asked the doctor if there was a way to thicken her formula so that we could "solely" spoon feed her, but there isn't a way to get enough calories into each feeding by just food alone, we would have to use formula. After much debate, research, consults with various doctors and other professionals, including watching Grace's bud go through a G tube surgery, we decided to go for it. We made the appointment with the surgeon.... and then we cancelled it.

I was so worried- was I doing the right thing by having her undergo another surgery? What if they had to intubate (put a ventilator down her throat)? Would I be lessening her viability for the next heart surgery? So, I did more research, and more questioning, and more praying and again, we decided to go for it. We made the appointment with the surgeon.... and had surgery the next morning.

What a rough surgery!! She was in so much pain, and anguish. She cried, and cried and cried and cried. They eventually had to morphine her and sedate her and ibuprophen her! Virgil, her Navajo spirit guide (I'll go on to this in a second), came for a quick visit, did some healing prayers for all of us, and within 2 hours, she was a different child!

The hospital kept us overnight for monitoring an extra night because of her special heart, but released us and home we went.

**I will get back to Virgil in a moment, see end of blog**

Once home, Grace was needing meds continually to avoid pain. We found a whitish discharge, and noticed the surgical site was red and oozy. After speaking with the surgeon over several days, we went into the office to check for any further complications. The surgeon reccomended an upper GI to check for any problems with the procedure, but all was well. The surgeon couldn't explain Grace's irratibility and other issues, and advised that we should admit to the ER if things continued to get worse for further monitoring.

July 22nd, our adoption day, was finally here! We all dressed in pink, friends and family included.

Even the judge commented on how color coordinated we all were. The judge told Gracie that she had picked a great family, and the ceremony was over.

We all went to Mimi's Cafe for a celebratory breakfast/brunch and I noticed that Grace was a bit fussier than usual, but chalked it up to over-stimulation. A few hours later, the discharge from her G Tube site changed from white to yellow to green, and I finally called again and pre-arranged an ER visit. When we got to the ER, we noticed she was a bit blue. It hadn't happened before, and we didn't know why, so they admitted us to the cardiac floor to monitor both

her heart and G Tube. All was well with her G tube, but her breathing and blueness continued to get worse and worse. We went from being on no oxygen, to needing .2 liter, .5 liters, 1 liter and finally up to 15 liters at one point, then back down to needing a constant 3 liters... not normal at all!

I questioned her heart and the cardiac physician on call refused to leave home to re-evaluate. Being the pushy bitch that I am when I need to be, I called other cardiologists that I knew, and finally got some answers and an admit to the ICU. Once in the ICU she stabilized, with the intent of getting answers first thing in the morning.

That brings us to today- Grace had a cardiac catheterization (basically a camera is inserted into her heart/lungs to take photos) and they were able to see her shunt and heart function like never before. She was under general anesthesia for 3+ hours, worrying me like crazy, but she did great. Turns out, her shunt is way past overdue- she should have required surgery 3-4 months ago!! However, her body, being a fighter, "grew" larger superficial arteries to supply extra blood, thus oxygenation, to the lungs, keeping her sats up and her color pink. If we hadn't done the actual cath procedure, and opted instead for a CT scan or EKHO, we would never have known, and possibly have been sent home on oxygen.

Instead, Grace will be having her 2nd surgery, AKA "The Big One!" Grace will be open heart, meaning they'll actually cut into her heart and place her on bypass, having a machine do the work of "living" for her while they operate. The actual procedure is only 3-4 hours, but feels like days long when you're living it! Grace will have her surgery possibly within the next 3-4 days, but within the next 10 days. We'll be moving into the Ronald McDonald Home again for the next month or so, until she's recovered and ready to go home. This surgery they'll be building a "conduit" to connect her pulmonary artery and heart, and then also closing the hole in her heart. Recovery should take 10-20 days.

Good news- she'll be able to travel to higher elevations soon- this means we can visit friends and family, visit Sedona, visit Flagstaff, etc. We can live like normal for hopefully a few years!!

I'm really scared about the procedure, but it's a neccesary evil, so I'll deal with it- but not without fear and prayer.

Onto Virgil.... You probably remember me telling you about the Native American ceremonies that we have participated in, and the other Native American things.... Well, 2 coincidences have appeared regarding Virgil now- first, when we first met him @ his house, he blessed Grace and us, while she was on oxygen. Within the week we went from being on oxygen indefinitely to being completely off oxygen. Then, a few weeks ago, similar experience... she was a train wreck, Virgil came and blessed her, and within 2 hours- normal kiddo! Now, the whole "growing" of collateral arteries to keep her healthy while she grew stronger and healthier for her next heart surgery.

I will update as we go on- but thank you all for the prayers, support, kind words and love. So many of you comment that I am an inspiration to you, and that shocks me, but I really couldn't be as strong as I am now, without you all!!

Beachy Feet

2009-06-30T20:09:00.013-07:00

I think I forgot how long the drive to San Diego was- and I think it's that way on purpose. If you forget, it makes it easier to go back again and again... I was so ready to move there after our 1st day. The condo was fabulous- a direct view of the ocean from our living room, kitchen and bedroom. It was a bit messy, but after some cleaning, we were ready to enjoy the week.

We immediately ran down the stairs to the beach and kicked off our shoes.

Unfortunately, mom stepped on a bee and we thought she might have an allergic reaction. Luckily the lifeguard was on duty and helped her out- he wasn't bad looking either!

After getting Grace wet, and her diaper soaked, we headed back up for dinner. The stairs are DEADLY! The LONGEST, STEEPEST flight of stairs I had ever seen! And there were people running up and down them for exercise every day- I think they were gluttons for punishment, or at least they enjoyed pain. We grabbed a quick seafood dinner and headed back for sleep. Sleeping with the windows open and listening to the waves crash was wonderful- I think I got the best night's sleep ever.

The next morning we woke up early, grabbed bagels and coffee, packed up Grace's stuff and headed out to meet some family at Sea World.

10 minutes after we got there, we realized that we had forgotten Grace's food, and Felix had to make the 30 minute each way drive, back. Poor dad! Fortunately, we spent most of the time visiting with my Aunt & Uncle, and Cousins & Niece.

By the time Felix had come back, we were just settling in for the sea lion show.

Grace was HOT! I left mid-show to find a hat for her tiny head. We almost had to buy a doll hat, her head was that tiny! We had a fabulous day at Sea World, and Grace enjoyed meeting her cousin, Serenidee.

Serenidee thought Grace's name was "Aunt Joyce" and so she kept saying she wanted to see Aunt Joyce get her diaper changed. Of course we laughed hysterically each time, as that is my mom, and she would be horrified to think of herself as needing a diaper!

We walked around the park, visiting the various sea creatures.

Grace fell asleep for a much needed afternoon nap, while we rested.

Grace was able to touch a sting-ray, and even feed it some worms. It was pretty amazing to watch my baby do this- I felt like she was growing up right in front of my eyes!

We moved on to see Shamu, eventually. Grace and Daddy even did the Shamu Splash Dance- Sha-Mu, Sha-Mu!

After Shamu, the family took a photo, ate some dinner and bid each other farewell. What a great mini-reunion!

The weather got bad the next few days- windy and overcast. We tried to do city things- looking @ the various shops, especially in the Cedros District, and also in Del Mar. We ventured to Sea Port Village for a few hours also.

We played games, read our books and relaxed. We took walks, swam in the pool and had a genuinely good time.

We had one good sunny beach day @ Coronado Island. The weather was perfect, and Grace loved being a beach bum baby.

When we got back to the condo, Felix prepared a crab feast.

Grace got bathed and then zonked out for the night- I think the fun in the sun did her some good!

We finally made the venture to the San Diego Zoo. What a BIG zoo!! I can't believe we walked all that way, and uphill most of it to boot! As a souvenir, we made a couple of pressed pennies, a dog tag with a koala, and bought a DVD: Baby Genius' San Diego Zoo Trip. I had no idea that it would become the video that she watches non-stop, and that the DVD would become the only thing that can bring you out of a full-fledged meltdown. Thank God for the San Diego Zoo! :)

My Aunt Denise drove down to have one final family day with us- we toured Ocean Beach, almost got a contact high @ the local Starbucks, and then hit lunch in Del Mar. We took a quick walk out to the beach and then headed back for some relaxation @ the condo.

We hated leaving, but it was a drizzly, icky day when we packed up the car and pulled out. A few hours later we were in the desert, surrounded by cacti and suffering in the 100+ degree weather. Ah, to be home!

Viva Las Vegas- Wynn Big!

2009-06-08T19:56:00.000-07:00

Las Vegas was a blast! It was painful, but so nice to get away for a few days. We took a nap every day, and we spent almost 8 hours a day at the pool. The Wynn pool rocks!

Seriously good music, mellow adult crowd, and good bar service. Our goal was to do 2-3 shows, and after seeing Mystere, we decided that would be our only. We really weren't impressed- Corteo & La Reve were far more impressive. We gambled very little, but mostly just relaxed. We did one really nice dinner at Bobby Flay's Mesa Grill. I wasn't too excited about it, but the food was AMAZING! I'm excited that I was adventurous enough to try some new things. Yummy!

We tried to catch an early plane home, but we missed the gate by 10 minutes. :( Oh well! It was great to get back to Grace- being away was awful, but so necessary for my rejuvenation. Plus, Grace pulled her feeding tube out of her nose 10 minutes before our plane left Las Vegas.... I swear she knew we were on our way home, silly kid.

1/2 Birthday

2009-06-01T10:36:00.000-07:00

Happy 6 Month Birthday, Gracie! You are a doll as always!

Transition

2009-05-17T17:58:00.001-07:00

It's been an EXHAUSTING week! Grace has been ill, off and on, and I'm thinking that her teeth are to blame. She has an eye tooth coming in and a molar- most kids get those teeth last! The eye tooth is literally poking through the gum, and if I even come near it, she screams bloody murder. She's been puking for a week or so now, pretty much 2-3 times per day, which means extra laundry, extra cleanup and stinky mom and baby. Felix comes home tomorrow- THANK GOD! I always realize how much help he is when he's gone.... I need some respite! It's been an odd few weeks for me. I haven't been to work since January, but I always knew it was there in the background. Now, I've finally officially quit my job, well, my career per se, and I'm mourning the loss of it. Just knowing it was there as a safety net was huge. Grace challenges me with her needs, but it's a different kind of mental challenge, so I have to remember to challenge myself in new and different ways, so I don't go CRAZY!! :)

Felix and I are gearing up for our first overnight away from Grace (well, mine, not his...) as we'll be in Las Vegas for three nights next week. Felix and I plan on spending the week at the pool, doing a few shows, and overall try to enjoy a relaxing adult experience. We're staying @ the Wynn, so I'm sure we'll be plenty pampered. Two weeks after we get back, we're takingmy mom, Pam, Grace and us to San Diego for a week of fun in the sun! We hope to do Sea World, The Wild Animal Park and of course, the Zoo! We're renting a condo that is beachfront, so we'll give Grace her first dip in the ocean! Very, very, very excited.

This week is going to be non-stop! Tomorrow we have her upper GI to see if she is having reflux (explaining the puking spells). So, we'll drive 90 miles roundtrip just to do it again in the evening to pick up Felix from the airport- Woo-hoo! Tuesday, we have the home health nurse and the speech therapist coming for an eval. Wednesday we have the Gastro (stomach) doctor to talk about feeding, her upper GI results, and the possibility of the G Tube. Thursday we have a cake delivery set, and another speech therapy appointment and then Friday we meet with our adoption social worker for a home visit. Aren't you envious of my crazy, non-stop life? As much as it's a crazy one, I love it!! Stay tuned for the the updates as I can fit them in this week.

Catch-Up

2009-05-15T15:28:00.000-07:00

I know it's been WAY too long since I last posted- 2 months and 2 days have passed! So much has changed, it's like I'm a mother to a completely different child! Grace is really coming into her own these days- such a wicked sense of humor! She really keeps us all laughing and smiling, and laughing, and occasionally pulling our hair our, but I hear that's normal.

Okay- so quick super-speed rundown: Grace is off the oxygen, she's been off for quite some time now (a month, maybe??) and she's kicking butt and taking names. Her oxygenation levels are actually BETTER without the oxygen- crazy kid. Grace is off the monitor at night (the apnea monitor) that monitors if she stops breathing. Grace is off the saturation monitor full-time, I only have to spot-check her throughout the day. Lastly, Grace is still with a feeding tube, but that's a whole 'nother story, so keep reading!

Through random means, we met a Navajo gentleman who has taken Grace under his wing, so to speak. The first time we met with him, he blessed Grace, myself, Felix and my mother to give us all the strength to help "heal" her. At that time, Grace was on the oxygen with no outlook of coming off anytime soon.... now, regardless of who your God is, I think this is pretty darn amazing. A week after that blessing, Grace was 100% off oxygen, and like I said before, she's even stronger now.

A week ago, we met with the man again, this time at a dedicated healing ceremony for Grace. Several tribesmen (from various tribes, including Grace's!) came together for a purification ceremony in the sweat lodge. Before entering the sweat lodge, they "baptized" Grace and again blessed all of us. Unfortunately, Felix wasn't there for this ceremony as he's been in Denver for 2+ weeks working his tail off. The ceremony was amazing- we met a Lakota man who will be dancing for Grace, with eagle talons piercing himself. To the casual observer, that probably sounds a bit creepy, but I'm told it's quite the blessing and honor for someone to do this for us. Besides, I really want Grace to know her culture.

We got Grace's ears pierced on April 15th.

We finally got a court date!! As of July 22nd, Grace will officially be a Marchese! At that time, they'll hand us her corrected birth certificate listing Felix and me as parents and her as Grace Loren Marchese. We are so excited! That day can't come quickly enough!!

Grace and her buddy Bree hung out together- they're so cute together. They hold hands whenever they're together and giggle and smile.

We had Grace's 1st Easter- she was spoiled rotten! She got gifts from us, Papa & Grandma, Oma and Mimi, and of course, us. Oma made a HUGE breakfast- so yummy!! She wore her yellow Easter dress for some of the day, until she did the typical spit-up all over. :) Ahhh... kids! Gotta love em'.

It's still a roller-coaster ride of various doctors and specialists, sometimes frustrating because Grace is such a medical anomoly. We try to make the most of each appointment, taking time to have fun laughing with her, like her cardiologist visit with her daddy.

Apparently, her head is too small (micro-cephely) and this can lead to a whole gamut of learning disorders, or to nothing (really specific, right?!?) and because of her random genetic mutation, they're not really sure what that will do, so they want to watch her. I understand wanting to watch her, but they try to hypothesize what could go wrong with her based on this genetic mutation- but there are so few children in the world with this specific mutation, that there is no concrete evidence, so the doctor actually says that it is her "best guess"..... it makes me so mad, because moments before she's telling me all the horrific things that could happen (mostly learning-related), but again, it's all just a guess and she could be uber-brilliant.... UGH! Of course they want to see her again, but I wonder, is it for our benefit, or theirs? Do I see a medical study being published in the future?? Okay, I'm done being snarky...

Grace's surgeon is moving to San Francisco. He's a young, extremely capable surgeon and doesn't feel like he's getting enough "fame" here in Phoenix, and wants to work at a University-setting where he too can publish medical studies (do I see a pattern here?), so we have the choice of flying out to San Francisco to work with him, staying here and working with the head of CT (cardio-thoracic) surgery, or flying to Houston to work with some other brilliant surgeon. I was 100% ready to fly to California to work with our prior surgeon, but the more I speak with our cardiologist the more I think we may stay here. The surgeon that operated on her the first time was assisted during the lung-crisis (opening her, closing her, opening her again) by the head of CT surgery, and the head of CT surgery has MUCH more hours and experience under his belt. I asked the doctor the age-old question, "What would you do if this was your child?" but he answered, unexpectedly, "Neither." Huh? Yes, he explained he would probably go to another hospital, because if God-forbid something went awry with the surgery, he'd have to face the co-worker that operated every single day.... Okay, I get it, but I was looking for advice, here! Oh well, I guess he saw right through my inability to make decisions and turned it back on me.... smart man. Ha!

Okay, so the feeding issue.... let's back up to the beginning and I'll lay out the foundation for you.... When Grace was born, she was given donor breast milk via NG (nasogastric, aka in the nose) tube. This went on until she got NEC (read prior journal entries) at which point she went on NPO (nothing by mouth, or nose as you have it). After surgery, she went back on the donor breast milk, but eventually got Chylothorax (read prior journal entry) and was put on Vivonex, a fat-free formula to help with the fatty lymph that was collecting. During all of this, we never really tried to feed her by mouth... not until 2 days before our release from the hospital, when they started her on Neosure. She did well at the hospital, taking up to 15 cc's by mouth at a feeding. Unfortunately, about a week after we came home, we discovered by way of constipation and bloody stool, that Grace was allergic to the Neosure and that we would be switching to Pregestimil, a partially broken-down formula that would be easier on her tummy. With that swtich, we lost Grace's ability to mouth-feed. She became enraged whenever anything liquid-like came towards her mouth. We could maybe eek out 5 cc's per feeding, but it was a pure struggle. After weeks of diarrhea, we discovered that Grace was also allergic to this formula, and they switched us to our current formula, Elecare. Elecare is a crazy stinky formula- it's not available retail AT ALL, so we have to have the home health company deliver it... what a pain! Throughout all of this, the doctors have been referring us for various lab works- modified barium swallow, upper GI, etc. The modified barium swallow was to check for aspiration.

The thought was, maybe she's not eating because she's unable to get it to her stomach, and instead she slowly chokes on it.... Nope, not that. The modified barium swallow came back normal, but it did give us more information. Grace is able to swallow, but she's super un-coordinated once liquid hits her mouth. She can't figure out how to suck, swallow and breathe all at the same time, and doesn't know how to ripple her tongue to move the formula backwards. This gave us some hope- she just needs practice! Hallelujah! We saw a speech therapist, and they agree, major oral aversion (basically fear of anything in her mouth), very weak suck, and inability to coordinate swallow. This means we'll be doing speech therapy 3x per week, 45 miles away from our house- you know you're jealous!!! Of course, I would do anything for her, and I'll take her to each and every appointment with a smile on my face, I promise! She'll also do speech therapy in home, and also at a local, nearby clinic. To add to that, they'll have her begin physical and occupational therapy so that she can have an early edge on walking. The thought is that she won't be able to crawl after her next heart surgery, so if we can get her close to, or actually walking by the surgery, she'll be a much happier kiddo. Stay tuned... we're not even rolling over yet (at least not when she is awake). Next week we'll meet with the GI doc again and talk about the possibility of a G tube, a temporary "button" surgically inserted into her belly, so that her face is left free and clear of any tubing, her throat is left free and clear of tubing, and this will hopefully facilitate better eating habits. For more information about the G tube, I suggest wikipedia- that place has information about EVERYTHING!

Blair and I painted Grace's toes- she got the royal pedicure experience!

I know I'm missing things- so much has happened over the past 2 months!! We had Grace's fundraiser garage sale- it did awesome, over 2k raised!!

Thank you to all of you who helped, either by donating, thinking of us, praying for us, or even assisting with the actual event. We couldn't have done it without you!

I celebrated my 1st mother's day- what a great day! It's too bad Felix couldn't be there to celebrate, but we did brunch in style @ the JW Marriot.

I feel so blessed to be a mommy to my little bean, she's my world! I find myself just staring at her in amazement, she's learning so much, so fast!

Grace will have a few cousins coming this year- my sister-in-law is approx. 4 months pregnant!! My cousin Danelle will have her 5th child, my cousin Sheryl will have her 2nd daughter, and my cousin Noelle will have her 2nd child, this one being a girl. So many blessings!!

Well, I think that's as much as I've got in me for today. Ta-ta for now!

Baptized on St. Patty's Day

2009-03-19T14:40:00.006-07:00

My in-laws came to visit this week- ALL of my in-laws. ;) It was a crowded house, but we had a blast. For the first time since coming home, the week felt normal. Almost no doctor's appointments! Grace loved her grandparents and uncles and aunts- she got held by everyone. We came up with names for the grandparents: Grandmommy & Nanu.

The family flew into Mesa- what a trip! That airport is so FAR away from our home. We had hoped to be able to fit in the Renaissance Festival that same day, but the plane was late, we were late picking them up, and before we realized, it was 2pm and we still all hadn't eaten lunch. We decided on Cheesecake Factory, eating outdoors.

The next day we attempted the Renaissance Festival again. The NICU nurses didn't think going was the best idea with all of the dust, but we threw caution to the wind, and went for it. What a blast! Grace couldn't attend the final joust b/c of the dust, but we had a great time shopping around. She even won a dragon at one of the performances.

We also decided to try and do the zoo. Instead of going to the Phoenix Zoo, we went local. It was a VERY windy day, and at one point, the stroller blew over- with Grace in it! No harm was done, thank God! We had a beer at the aquarium and called it a day. Then we joined my mom and Pam for dinner at Macayo's.

Since Tony and Christina were in town with their spouses, we decided to try to have Grace baptized. I could not believe how difficult this was! The Catholic Church was completely unwilling to help us, despite Grace's fragility. They would only consider if Felix & I had been married in the church, Tony & Kimmy and Christina & Sam. Since we all had outdoor weddings, that wasn't happening.... I found a beautiful older church in Litchfield Park, and they agreed to perform a non-denominational ceremony for us. The whole event was pulled together in less than 4 hours. We were lucky to have some friends join us for the celebration. Grace even wore my Christening Gown- so beautiful!

After, we did an Irish/Italian feast back at our house. Since she was baptized on St. Patty's Day, it only seemed right. I bought several dozens of cookies and pastries from My Daddy's Italian Bakery and then we did Corned Beef and potatoes.

Since we didn't get a true dinner out, we treated Felix's family and my mom and Pam to Roy's Hawaiian @ the JW Marriot resort.

The dinner was phenomenal! We had a few hiccups on the way home, though. First, we ran out of oxygen (sorta), as the back-up tank was in the car. After Felix ran (literally, ran) to get the oxygen, I was in such a panic to get her back on, that I didn't put on the concentrator and the oxygen tank literally blew in my hands- I had pieces of metal and cuts all over my hands. We finally got the other back-up tank and were set for the drive home. 15 minutes in, my mother-in-law and I heard a spitting noise and realized the tank was leaking, and possibly this one was going to blow too! We had no other back-ups- so we pulled over and called 911. The fire department brought us an additional concentrator- the tank was fine. Apparently the 'O' ring had torn, and since it was a pretty common occurence, they were ready to help us.

The rest of the trip went on without a hitch. We had a great visit and lots of good memories!