I'm your big brother Winston & I wanted to start sharing with you now, even though you won't be here until June 2014. I'm so excited to become a big brother. I promise to love, support & protect always! Mom tells me that I'm going to be the best big brother ever because I'm such a caring, loving little boy. I know she's exaggerating, but I do know that I will love you with all my heart - always. Mom is 25 weeks pregnant now & I can feel you moving around inside her belly. We talk to you every day & I love rubbing Mommy's belly and giving you kisses. I figure I should start my first letter to you, by catching you up on everything that's happened in the past 25 weeks (well mostly the highlights & important facts).
On September 26th, 2013, we were at the Grand Canyon celebrating Mommy's 30th birthday. We found out after a lovely dinner on the ridge of the canyon that we were having a baby!! Quick calculations told us that you had only been growing for about 4 weeks, but we were all so excited. What a wonderful birthday present for Mom & a belated birthday present for me (I turned one 5 days earlier).
We decided to keep it our little family secret, until Thanksgiving. Even though we weren't telling people, Mom and I talked to you every morning and every night. She bought me books about waiting for baby & bringing baby home. At my one year photo shoot, we snapped some pictures of me wearing my "big brother" shirt, so that we had some cool shots to share when we were ready to announce to family and friends. Here are a couple shots from my photo session:
Here's one of our family - you've been growing for about 7-8 weeks.
You & Mommy ran an 8k in November. Way to go little sister - you completed your first race (Mommy did too)!!
We made the announcement to our grandparents, aunts, uncles & cousins on Thanksgiving. We were in Rochester, NY at Aunt Emily & Uncle Rick's house. I had my "big brother" tee shirt on underneath my dress shirt. When dessert was served, Daddy brought me in wearing my t-shirt. Uncle Jon & Ann Marie spotted it right away, but it took some time for Grandma Mimi & Grandpa Howard to catch on. When we got back to our hotel, we set up a FaceTime call with Grammy, Pop, Uncle Mario, Aunt Shana & Aunt Ari. They noticed my shirt right away. Everyone was so excited to hear that you were going to be joining our family this June. You & I crossed our first international border into Canada this trip & spent the night in Niagara Falls.
Mommy & I have been going to our prenatal appointments & I love exploring the office. We also get to hear your heartbeat with the doppler, which is pretty cool. Sounds like some of my white noise machines. Mom & I had some fun taking photos during your 16th week growing.
We took a trip to Ft. Lauderdale after Christmas. You're certainly going to be a world traveler! Mom & Dad love to travel (even though it rarely happens that often anymore). I can't wait to travel with you by my side soon.
Mom & Dad decided that they didn't want to know your gender during the ultrasound (I peeked of course, but didn't tell Mom or Dad). The technician put your gender in an envelope & Mom had a friend pick out a pink or blue balloon for us to open at Dad's birthday dinner. We went to Zahav in Center City for Daddy's birthday. The food was delicious & right before dessert we got to open a big box that held the reveal balloon. A GIRL!! Mommy & Daddy were so excited. I'm not really sure if I wanted a brother or a sister, but I know that I want YOU!!
We had to go back for a follow up ultrasound on Thursday, January 30th because they had a hard time seeing your heart well during our anatomy scan. I got to hear your heartbeat & see you up on the the big screen again. Unfortunately, this session was not as happy as our last. The radiologist still had a hard time seeing all parts of your heart & we were referred for an echocardiogram to get a better look. None of us were sure what that really meant, but Mommy burst into tears as soon as the radiologist left the room. Dad & I comforted her. He told us we shouldn't worry & once we sat down to discuss this with the radiologist further he insisted we be seen at CHOP. Our Grandpa Howard has worked at Children's Hospital of Philadelphia as a pediatric urologist for over thirty years. He'd know exactly who we should meet with.
Mommy was getting lots of anxiety that the radiologist couldn't get us an appointment until Monday morning. She said she absolutely could not wait through the weekend to get some peace of mind. On Friday morning, she called CHOP herself & asked to be seen that day. They told her they didn't have anything available & that Monday was the first appointment possible. She decided to pull out all the stops & mentioned Grandpa Howard's name, as our grandfather. Within ten minutes, they called back & said we could be seen in 45 minutes. WOW - Grandpa Howard must be a super hero at CHOP or something because that was definitely the first available appointment possible. Mommy quickly changed me out of my PJ's, opened the fridge, emptied half the contents into my diaper bag (we didn't even had breakfast yet), called Daddy from the road & told us to meet us there ASAP - off we went! The echocardiogram took two hours!! Mom had to sit very still & couldn't really hold me, while they got lots of video of you & your heart. Did you know that they can watch the blood pump in & out of your heart with pretty colors on the big screen. As much as I love you sister, I'm only 16 months old so I wasn't really interested in watching you on the screen for the entire 2 hours. I did have lots of snacks, played with lots of toys and books that Mommy brought & went for some walks with Dad. I also discovered that I could get into the bathroom attached to our room - opened the door all by myself! The CHOP doctors sat in another room watching you on their TV the entire time. We had to switch rooms at one point so a different camera could take even better pictures of your heart. Mom was hoping after the echocardiogram we'd find out quickly that you were perfect & we could head to Cake for a late lunch.
The fetal heart team, a nurse & a social worker met us in the consultation room after our very long echocardiogram. They had a box of toys for me to play with, but let's be honest I was very patient all morning & I was really ready for a nap and then lunch at Cake. Mommy had to hold me, nurse me & let me nap on her while the doctors talked about your heart. Friday, January 31st was the day CHOP dropped an atomic bomb on our family. The doctors told us that your heart was not growing normally. Specifically, little sister, the entire left side of your heart is underdeveloped & won't be able to catch up to the rest of you by the time you're born. They aren't clear on an official diagnosis for your rare congenital heart defect yet because there are some variables that could change their surgical paths. It's very possible that by the time you're born your diagnosis will be Hypoplastic Left Heart Syndrome.
Your heart can continue to deteriorate, as you continue to grow inside Mom's belly. We'll have to visit CHOP quite frequently during the rest of the pregnancy to watch your heart on the big screen every few weeks. Your heart valves, aortic arch & left ventricle are a particular concern to the doctors right now. They'd love for you to have two viable ventricles when you're born, which would make your surgeries much easier. If you only have 1 viable ventricle, it's likely that you'll have to have many surgeries to rework the plumbing in your heart. They can't fix you completely, but they can rework the tubes in your heart to allow the right side of your heart to do all the work. Mom & Dad know more about the specifics & try not to talk about it too much in front of me because Mommy gets really sad thinking about it.
The doctors also told us that your heart defect could be a symptom of a few different syndromes - Turner's & DiGeorge. They gave Mom and Dad the option to let you go peacefully before having to deal with the surgeries or to let you come out fighting for your life. The car ride home was very difficult. I've never seen Mommy so upset. She started crying & to be honest I don't know if she's ever stopped yet. Dad was really strong & didn't shed any tears in front of me. Mom kept leaving the room all afternoon so I wouldn't see her cry, but I could hear her sobs even though I couldn't see her. We thought everything was going really well - perfectly in fact, but we just had our entire world crumble before us.
Grandpa Howard got the director of the Fetal Heart Program to speak with us on the phone that afternoon. Mommy & Daddy let me watch TV, eat snacks on the rug & skip my nap, while they talked to Dr. Rychik. He helped them really understand what to expect with your surgeries, what you may not be able to do as you continue to get older & some options to check you out even more. We decided to make an appointment for Monday to have an amniocentesis done. This will tell us if you have any of those syndromes.
Monday morning I went to school, while Dad & Mom went off to spend 5 hours at CHOP. My school closed early because of the snow storm we were having, but Mom's friend Lizzy (and my friend Ellie) got to pick me up. I spent the afternoon at their house playing and having a great time! However, Mommy & Daddy were being put through the ringer. Their day started with a discussion with the genetic counselor and followed by another 2 hour ultrasound. During this ultrasound they check your brain, all of your other body systems, your growth rate & to see if you had any physical characteristics related to these syndromes. Thankfully, other than your heart, everything else is developing perfectly. This brought us all some hope!! After their ultrasound, they had an hour meeting with CHOP's OB team to make sure Mom was a good candidate to have you in their special delivery unit and discuss where we go from here. Lastly, Mom had to have the amniocentesis. They put a giant needle into her belly, into the uterus where you live & took some of the fluid to test. Dr. Johnson told Mommy that you were actively trying to grab the needle (Mom couldn't watch on the big screen - she kept her eyes closed tight & squeezed Dad's hand). I don't blame you for not wanting that needle in your home! The tough part for me was that Mommy had to rest for the next 48 hours, which meant she couldn't pick me up. We could snuggle on the couch together though & I made sure to give you lots of kisses (and rub Mom's boo-boo).
We found out on the way to Grammy & Pop's house, on Friday, February 7th that all the amnio tests came back negative. This is wonderful news little sister!! You don't have Turner's Syndrome or DiGeorge Syndrome. Your are perfect with one minor flaw of the heart (ok so it's not really so minor, but I'm your big brother so it's my job to help you be optimistic). What a way for me start my sleepover at Grammy & Pop's! Lots of relief taken off all our shoulders. We definitely would not allow you to go peacefully in Mommy's tummy. You are a strong, willful and determined little girl & we're all confident that you will be a fighter.
Mom & Dad had a great night at Amy and Stu's wedding. They felt so lucky to have found out such wonderful news, while celebrating the love of 2 awesome people. They danced, laughed & finally felt like they were putting the broken pieces of the world back together. On the dance floor, they decided what your name would be. Sorry baby sister, I'm not going to let that slip just yet!! Mom definitely thinks that it is very symbolic & will help protect you always! I promise - it's not too weird! Don't worry - you won't be called "Buddha" or something like that. The next morning Mommy decided it was a good day to begin crib shopping. They picked out a style they liked & bought the first decoration for your nursery. Mom insists that the them be peaceful, zen-like & Buddha inspired. The first item she purchased was a Buddha head. Dad isn't sold on this theme, but Mom insists your room have spiritual figures to protect you always.
The past two weeks have been filled with lots of sadness, fear & uncertainty in the Snyder household. We are finally starting to feel hopeful and optimistic again. We have our next appointment at CHOP scheduled for February 28th. They'll be able to see how your heart is doing & each time we have an appointment we'll get more and more answers. Mom's been filling her notebook with LOTS of questions. I don't think her wheels every stop turning.
Mommy is working with her acupuncturist to help increase her oxygen levels & send as much vitality as she can to your womb. We're also a candidate for a trial at CHOP that will help increase her oxygen levels. Basically, the more oxygen she has in her body, the easier it is for your lungs to relax, which will help pump blood through your heart to keep it as healthy as possible. I know she is doing lots of research to see what other experimental things she can do to help you grow as strong as possible.
Mom has also gone into research mode to make sure that we are well prepared & surrounded by many support systems to help our family each step of the way. She's joined a few different support groups and organizations that help families with similar diagnoses get some answers and feel supported. Some of these organizations are even sending us care packages full of goodies that you'll need in the cardiac intensive care unit and neonatal intensive care unit. Even some fun treats for big brothers that will definitely be empathetic & caring every day that you're there. How wonderful to have so many people cheering you on baby sister!!
We're continuing to celebrate you & document you every step of the way. In fact, we even decided to take an impromptu trip to San Francisco this weekend. Dad has work there early next week & since we're not sure when we'll be able to get away again we're all going. Another trip for you!! It may be a while before you're strong enough to leave the CICU & NICU, even after that go too far from our home, so I'm so excited that you'll be there (in belly of course) to visit a place so special to Mom & Dad. Here are some shots of you in Mom's belly, just before 25 weeks growing.
I promise to continue writing to you to keep you up to date on how you're doing. Mom, Dad & I love you SO much & can't wait to meet you around June 3rd. Mommy has been teaching me how to take care of babies, so I've been practicing by giving the dogs baby bottles, practicing gentle touch on them & sharing things with Mom's belly. Today during our play picnic I shared my birthday cake with Mommy's belly button & gave you a big kiss. I hope you had just as much fun having a picnic with Mommy, as I did. Goodnight little sister, I love you so much! You are definitely going to be our Heart Warrior & I will be cheering you on every step of the way!!
Snuggles & Kisses,
Winston (your big brother)
