Updates and Future Worries

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

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

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!

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!

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!

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!

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....

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!

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...

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

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!