Wednesday, September 30, 2009

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!

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9 Months Already!

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

The Marchese Family

Ms. Flirty Diva

All Attitude

Happy Halloween!!

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Thursday, September 24, 2009

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!

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Friday, September 18, 2009

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...


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Friday, September 11, 2009

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!

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Friday, September 4, 2009

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!

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Tuesday, September 1, 2009

Back in the Saddle!

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!

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