Cardiology Check-up 1/21/09

Before leaving on vacation, Maddie had a visit to Children's Bellevue with Dr. Vernon. Yes, we got to see our original cardiologist again since her return from maternity leave! Meg's first remarks when seeing Miss Maddie were, "she's HUGE!" since she hadn't seen her in person for 7 months (only in pictures). Maddie has figured out what's up now and started crying the minute we began the appt. She is, in fact, HUGE, weighing in at 8.20 kilos=18.0 lbs!!! WOW! The 28 cal is doing the job plus her new LOVE of feeding herself since she's topping off at around 20 oz a day with her bottles. This puts her in the 18th percentile for weight. Her height is 28.15 inches, 25th percentile. So we were super excited about her growth. She also had an EKG, an echo, and sats were 81%. Maddie has leveled out in the low 80's since her Glenn. We ended up getting a good echo with the help of Maddie lying on mommy's chest/lap with a sucker in hand!!! Hey, whatever works to get a good look at that heart of hers! She devoured it and we were able to get a thorough echo done :) Everything looks about the same, her P.A's are still small, the branch that was narrowing looked about the same and we learned of some new news that she has mild aortic valve regurgitation. The left side of her heart is dilated because it does all of the work so a little leaking is "normal" with her anatomy. We don't have to follow up for 4 months! That's good news in itself!

Pigs

A new cousin

Welcome baby boy Tripp Allen Stewart! My older brother Jason and his wife, Sybil, had their sweet boy on Wednesday, January 14th. Tripp weighed 7 lbs. 5 oz. and was 19 inches long. What's cool is Maddie, Kylie and Tripp are all spaced exactly 5 months apart...they're going to be our Three Lil' Amigos! This makes #6 for the Stewart Grandkids, all under the age of 5. Congratulations Jason, Sybil & Jett Henry!!!

Ba with all of his Grandsons

10 Months!

It's already that time again! Maddie turned 10 months old today! Time is sure zipping by and these milestones are coming quicker than we're ready for. She's officially crawling in the right direction now and is enjoying her new mobility. She's trying to pull-up on everything in site, including the toilet this morning (with the seat & lid up, gross). Yikes, think it's time to baby proof!?! Her 2 favorite places to crawl to: the boys bedroom and the bathroom. Now if I can only get her to eat more...she's only been taking between 18-22 oz. a day this past week. Good thing for 28 cal. formula. She is feeling much better, just hope her appetite picks up...especially since she's burning more calories with her crawling adventures!

Maddie at 10 months old...

Mommy (me) at 10 months old...
Here's the little go-getter in action! Just tune-out my "awful baby-talk on camera voice" I promise to keep my mouth shut the next time I record her :)

Sissy's sick

The cold bug hit our house again...Maddie coming down with it first this time. She's been fighting this for 9 days and just didn't seem like she was turning the corner. Last Monday she looked fine at her drs. appt. for her Synagis shot but as the week progressed, she became more miserable and the symptoms got yuckier. After a couple of very fussy evenings, a low-grade fever, tugging at her ears and a lack of appetite, I took her into the Urgent Care Clinic to have her checked out yesterday(why is it that these things always worsen on weekends?) Luckily, we were the only ones in there. She had 1 ear that's infected as well as her eye, so she's now on amoxicillin for 10 days and eye drops. So that's the skinny on little sissy!

Today marks the day

A year ago today, our heart journey began. We had taken the boys with us to the follow-up ultrasound, and little did we know of the news we were about to hear. We knew that this ultrasound was to double-check all 4 chambers of the baby's heart, since at our routine 20 week ultrasound the tech had problems finding all 4 (Maddie was breach at that ultrasound so they didn't make a big issue of it), as well as to check the placement of the placenta...it's weird, but I was more worried about the placenta. With each of my babies, I've had a follow-up ultrasound to check something so I wasn't too alarmed with this one. I had no idea that the world of Congenital Heart Defects existed.

I'll never forget how I felt while lying on that ultrasound table, the technician quietly performing her tasks, not uttering a single word to us even though we were pelting her with questions. We sensed something major was wrong at that point, just by her facial expressions and the tense atmosphere. Our questions stopped. After about 30 minutes of this, she went to get her supervisor, the radiologist, to see if she could get better pictures of what they needed. While she was out of the room, Bryan and I sat quiet, shaken, and in shock of what was happening. We were completely blindsided. After she returned, which seemed like an eternity later, we were told that our baby's heart had some suspected abnormalities. The right ventricle was very small, she mentioned the word, "hypoplastic", and they were referring us on since they didn't feel that they should make a diagnosis. We asked many questions but the radiologist and technician wouldn't really answer them. Listening to them whisper back and forth while they were looking and pointing at the screen was extremely agonizing...we felt so helpless and confused.

After the ultrasound was complete, we were told to go wait in the waiting room while they talked to my doctor about the findings. Bryan and the boys went out to wait while I made my way into the bathroom where I completely lost it. I couldn't fight back the tears and found myself uncontrollably sobbing. How could this be happening to me? my baby? my family? WHY? This wouldn't be the first time I'd ask the question "why" (I still do at times), or that it wouldn't be the first time I'd lose it in a hospital bathroom! That's where most of my weak, furious, and desperate feelings have been unleashed. God and I have had some rounds in hospital bathrooms!!! When I finally composed myself, I went out to wait with my family. As I sat down and looked ahead, through bleary, swollen eyes, I noticed that the pregnant, young girl sitting across from me had a very large tattoo on her neck/chest. Now, I don't have anything against tattoo's but this one definitely caught my attention and just rubbed me the wrong way. She was wearing a low-cut shirt to reveal the big colorful artwork....her tattoo was of a heart. Not the shape of a heart but the anatomy picture of a heart. Her tattoo was of an actual heart, I can still see the aortic arch! God does work in mysterious ways, so maybe he thought I needed a visual since I was still trying to wrap my brain around my baby not having 4 symmetrical chambers, after all, I am a visual learner. What irony, and I couldn't help but stare at it. At that moment I immediately thought, I'm sure her unborn baby is healthy and just look at her...she's an unfit mother and just too young to be one. I don't know what her story was or how anything turned out for her and I never will. I do wonder why though, at that moment, she symbolized (or her tattoo rather did) the news that I had just received...my baby's anatomical heart was broken and mine was shattered. I was very angry and extremely judgemental of a little girl that I didn't even know and I'd probably never see again. I did refrain from glaring at her, although I remember she kept staring at me, probably wondering why I looked so horrible, mascara streaks all over my red face for I had just cried the very "ugly cry" and was still trying to get a grip. To this day, the image of that tattoo is stuck in my mind.

If you were to ask me what I envisioned the prognosis of the news of our baby's heart would bring a year ago, it would not have been this. Life is good. Yes, 2008 was a challenging year...but we did it! SHE DID IT!!! And Miss Maddie continues to beat the odds each and every day with her defected heart. That's what "having heart" is truly about. And since this blog is a journal of sorts, I thought I shouldn't refrain from sharing the ironic tattoo story. Plus, Maddie might find this funny to read someday. It is part of her heart journey, actually marking the beginning of it. I just hope it won't give her any big "body art" ideas when she's older...

Maddie's heart story recap...

I never thought I’d know so much about the human heart, especially what could go wrong with it but when our third child was prenatally diagnosed at 26 weeks with a Congenital Heart Defect (CHD), a new world opened up for us. Our baby’s heart may have been broken but our hearts were shattered that day. We learned that without intervention, she would not survive and we were given three options: termination of the pregnancy, a three-staged surgery, or the comfort care method which was to take our baby home and let her pass away. We were lucky to have the surgical option and chose the three-staged operations route. Our “heart journey” quickly began.

Madison Grace Allred, “Maddie” decided to unexpectedly join our family on March 13, 2008, arriving a month early by an emergency, crash c-section at the University of Washington Medical Center in Seattle. Her birth was a very scary experience and we all feared the worst with her early arrival, but we quickly learned that our 5 pound baby girl was tough and would overcome any obstacle that came her way! After stabilizing Maddie, she was transferred to Seattle Children’s Hospital Cardiac Intensive Care Unit where her CHD diagnosis was confirmed: Pulmonary Atresia with Intact Ventricular Septum, Ebstein’s Anomaly, Atrial Septum Defect, Patent Ductus Arteriosis and Hypoplastic Right Ventricle. In short, the right side of her heart was severely underdeveloped and simply non-functional. On day 6, Maddie underwent her first open-heart surgery called the BT Shunt which basically created a bypass to get the blood to her lungs for oxygenation since her own anatomy did not suffice. She did fairly well post-op and after spending her first 19 days of life in the hospital, she was discharged and finally able to come home! It was a bitter sweet moment for us. Maddie needed a feeding tube the first few weeks after coming home but finally regained enough strength to orally bottle feed. But we knew that our stays at Children’s were not over…in 4-6 months, she would outgrow the shunt and need another surgery in order to survive.

At exactly 4 months of age, Maddie underwent her second open-heart surgery called the Bi-Directional Glenn. She cruised through her recovery and was home just 5 days after another big heart surgery! During this stay, we also learned that Maddie's kidney's were not growing symmetrically and our appointments with Nephrology began. She had a VCUG and this showed grade 3 and grade 1 kidney reflux. Luckily, she hasn't had any UTI or kidney infections and we've been told this is something she should grow out of. For the meantime, she is on an antibiotic, Bacterim, a UTI prophylaxis. The doctor's don't believe this is heart related, just an "added" challenge for her.

Since her second open-heart surgery, Maddie has been growing and thriving. She is developmentally on track despite her early birth, hospitalizations and procedures she’s endured. By looking at her, you would never know she has such a special heart. She is cyanotic (bluish tinge to her skin) since her oxygen saturations hang around 76-80. She is now on only 2 medications and we visit her cardiologist every 3-4 months. We are waiting for her third open-heart surgery called the Fontan Procedure which is usually done between 2-4 years of age. Upon completion of this stage, her heart will function as a single-ventricle, the left side of her heart doing all of the work while blood just passively flows to her lungs. She will be a single-ventricle or half-heart for her lifetime. Even though we are not “out of the woods” yet and coping with a heart defect is not easy, Maddie has shown us a strength that we can all admire and strive for. She is our little miracle and brings such HOPE to our family!

Update Summer 2009:
Maddie is doing wonderfully! She's walking, almost running, everywhere and into everything. We couldn't be more blessed. This spring she was having trouble maintaining her sats above 75. Her O2 saturations should be anywhere from 75-85, so she had her third cardiac catheterization with Dr. Jones at Seattle Children's in April. He was able to coil off two major collateral vessels by placing 4 metal coils in them. She has a tendancy to grow these veno-venous collaterals and may need another intervention in the future. Her 02 sats baseline is still a little low, hanging at 76-78. But she seems to tolerate this well and her Glenn flow shows no concern at this time. As for medicines, she's only on 1 baby asprin a day for her heart and Bacterim for her kidney reflux. We're even on 6 month visits with her cardiologist!!! Life is good :)

Update Summer 2010:
Miss Maddie continues to amaze us with her strength, endurance and "normalness"! We never expected life to be like this with her at 2 years old. She's simply a joy and adored by our whole family. A princess indeed! In May, she had another heart cath due to the trending down of low oxygen saturations (70-74%). Her left and right pulmonary branches were very tight (stenosis) and needed ballooning via cath. This has brought her O2 sats up to the higher 70's range and she has had so much more energy! She was quite blue and lethargic this winter/spring prior to the cath so this is tune-up was just what she needed. She's only on 1 baby asprin a day and a multi-vitamin with iron! She's been off of the Bacterim for her kidney reflux since her 2nd birthday and hasn't had any infections. Maddie's on quarterly visits with her cardiologist right now and we're just focusing on living life and getting calories in her. She will still need another surgery to complete the staged-repair of her heart. Most likely, this will be in the next year or two. We're so grateful for this sweet little girl.