Blessed

A message from Mom:

Hello Everyone!

Just wanted to take a moment to thank you all for the prayers, well wishes, cards, gifts, e-mails and phone calls during this time. It is much appreciated, and makes me feel less alone.

Special thanks goes to my sister who has been invaluable during this time. I am not sure what I would have done without her help. Ask someone else less able/likely to assist, I suppose.

My sister has been my transportation, my helper around the house, and has been watching my daughter Racheal for me as well. Not to mention giving me a small break or two while she is here so I can post this message to you.

For the first ten days after delivery, I was told by my doctors not to drive, go up and down stairs, lift much, or do any regular exercise. Part of that is because I am still on blood thinner for my blood clots, but also I am still recovering from having Preston, which normally takes six weeks minimum.

Thanks also goes out to my parents who have helped out doing handyman work around my house, brought gifts, and celebrated Christmas with us. Even though they couldn't come by and see Preston due to recovering from illness, you all have been super.

These fine folks had come all the way from Virginia (6.5 hours) to help!

Since Christmas Eve when I came to stay 24/7 in the progressive unit at the hospital with Preston, I've experienced quite a different world than just going to visit. During this time I have especially appreciated the help with my daughter since I haven't been able to be with her.

Although being here has been kind of like being a shut-in, it has been a joy getting to know my new baby. Preston is a little sweetie, even though as a newborn he pretty much eats, sleeps, and needs his diaper changed, I have been able to bond with him and get to know his schedule and how he communicates.

He likes to look at me, at my striped shirt especially, and colored toys. He makes all kinds of faces, and is very vocal with the grunts and cooing noises he makes. After I feed him, he usually either stares at me or falls asleep. When he has his eyes closed, often he'll smile several wide, cute baby grins. Precious!

I hate the hiccups

I really really hate the hiccups. And I get them all the time! I even got them when I was still in Mommy's tummy. I don't just get the annoying hiccups; I get the ones that hurt! When I get the hiccups I cry a bit after the first one, and after the next hiccup I cry even more. Somewhere between the fifth to tenth hiccup, I'm wailing and my face is all red. It helps when Mommy or Auntie Heather pat my back and talk to me until it stops. If they keep rubbing my back I'll go right to sleep, I'm so tired of fighting the hiccups. But then, sometimes, I get woken up by--you guessed it--the hiccups. Sorry the video is so dark, but here I am with Auntie Heather and the hiccups. (Hey--that sounds like a great name for a band...Auntie Heather and The Hiccups... no? Ok, then.)

Mommy and my nurses are still waiting for me to eat enough before they will let me go. They want me to eat about 2 ounces at each meal. Usually I leave about 1/4 to 1/2 an ounce. Since they've been thickening it a bit with rice cereal, they're going to try it now without the cereal, in the hopes that I won't get full so fast. I've also been real spoiled having Mommy here with me--I'm so used to being held while drinking my bottle that I insist on that now--only the best for me! I love to snuggle, so this combines two of my favorite things--a full belly and a warm snuggly lap.

Since the video was so dark, here's another picture from yesterday of me with my auntie.

Lil' Brother & Big Sis!

Today was another big day! I got to meet my big sister Racheal! We both had been really looking forward to this moment. I was so excited I was nearly speechless, and just stared and stared. I recognized her voice, though it was a little different from what I remember when I was swimming in Mommy's tummy. I can already tell we're going to be great pals.

Racheal even helped feed me this afternoon. Mommy showed her how to prepare my bottle. My nurse Elisa says maybe I'll be released tomorrow or the next day. It all depends on how well I'm eating. They want to make sure I can get enough myself without using the feeding tube. The thought of that is so exciting to me that I think...I need another nap.

Baby's First Christmas

Merry Christmas, everyone! Wow--what a day! Here at the hospital, I got dozens of homemade cards from some local kids. Santa brought me books, a stuffed bear, and even Rudolph! Mommy even got a pretty afghan that someone made and donated. No one wanted us to feel left out of Christmas even though we were stuck at the hospital.

Back home, on Christmas Eve, my big sis Racheal and Auntie Heather had opened one present each. They opened one for me too--actually our puppy Gizmo helped open my present since I'm not zen with the hand-eye coordination yet. Here's a cute clip of that--I can't wait to meet both of them. Please excuse my elf who forgot not to turn the camera sideways for video.

On Christmas day, Auntie Heather discovered that the power was out at the house. Duke Power told her there were over 700 people in the area without power, and they were working on it but didn't have an estimated time it would be fixed. Everything else was so strange about this Christmas, that having the power out was almost funny. If worse came to worse, she knew there was food at the hospital cafeteria. Fortunately, the power came back on at about 12:30, so Grandpa started the turkey and stuffing then.


They opened gifts at the house and later came to the hospital to bring Mommy her and my gifts. Mommy was glad to see the family. I hadn't been giving her much sleep. I keep falling asleep on her when she feeds me, so that takes longer than normal. Then she has to pump milk and clean bottles. (They're using bottles for me right now so they can measure how much I'm eating.) When she changes my diaper I wake up and get mad. Last night she only got 2 hours of sleep. I, on the other hand, have been getting tons of sleep, even during photo op sessions. Are you sure breast milk doesn't have tryptophan in it?

Christmas Eve

Today I moved in to the Progressive Care Unit at the hospital, and Mommy moved in with me. This is a transition unit where Mommy will be taking care of me most of the time instead of the nurses. The nurses will still be around to help out and check on me and Mommy. I'm real excited to have Mommy here so much now. I'll get to spend Christmas Eve and Christmas with her. I wish the rest of the family could stay here too, but I'll be home in a week or so.



It's really great news that we moved here today. All of my IVs and drainage tubes have been removed, and I'm off most of the medications except occasionally for an antibiotic, and a diuretic to keep my blood pressure down. I'm even off of oxygen and my nurse Elisa says that's great since most cardiac babies are still being weaned off of the O2 when they get here. I still have my little feeding tube going down my nose to my tummy just until I eat enough from my bottle. The only other wires are just monitoring my heart rate, respiration rate, and O2 saturation. Elisa showed Mommy how to pick me up--because my incision is still healing she needs to scoop me up from underneath instead of pick me up under my arms.



I'm still working on eating more. Even though it took the better part of two hours since I kept falling asleep on her, Mommy got me to eat most of my latest meal just now. Was this luncheon, afternoon tea, or dinner? With all this sleeping the hours just run together. Mommy is late getting her lunch because of that, but she doesn't mind. I have a sneaking suspicion she's starting to like that cafeteria food. Well, the convenience of it anyway. When she gets back it may be time to feed me again. Maybe we'll watch a Christmas movie while I eat--I'm voting for "The Polar Express".

Milking It

Hi everyone! I'm still in the CVICU... still doing pretty well. They took out the IV in my neck today. Every time Mommy comes by the nurses tell her how cute they think I am and how I like to snuggle. I've been using my lungs a bit more today--showin' off my attitude a bit!


I'm trying out milk for the first time. Mommy's been pumping every 2-3 hours since I was born (one week ago!!), so there's a stash here at the hospital for me. I take about 10 cc's of milk pretty well then I'm done. That's not enough to satisfy my nurses, though. I don't get this whole working for food thing. So far the IVs have been doing all the work. I also spit up a bit, so they checked to make sure I wasn't aspirating (inhaling my spit-up), and thickened the milk a bit with some rice cereal. But my nurse Jessica said that a lot of cardiac babies have issues like this eating. The ENT people might check me out with a scope tomorrow just to double check everything. For the night I've got a tiny feeding tube to get the milk down to my tummy.


My family's been busy at home getting more stuff ready for my arrival. Grandpa helped out with some handyman chores around the house, and put together a new bookshelf for Mommy. My big sis Racheal and Auntie Heather have also helped organize things so there will be more room for my swing and toys. Grandma brought a bunch of brightly colored presents to put under the tree. Mommy says there are so many gifts waiting there that her friends and family gave me at her shower too. I can't wait to see everything. I won't be home for Christmas, but it will be an even better holiday when I do get there.

Momma's Little Boy

Today was the best day so far. I have even fewer tubes, and they even took away the pacing leads. I'm doing great! My nurse Joanne sang some songs and I like "Apples and Bananas" best. But I forgot all about that when Mommy walked in the room. She got to hold me for a long time and sing and talk to me. I had a lot to say to her, too. In fact, I didn't stop chatting the whole time. It all came out as little cooing noises though. I'll have to continue practicing that enunciating thing. But it was clear that Mommy understood.

Don't I look better? I didn't mean to scare anyone yesterday with my photos--I really was feeling better! Tomorrow I will probably start on milk for the first time and move from CVICU probably back to NICU. Joanne says I'm a really good baby--I don't cry at all when they're switching around the tubes and stuff. I guess the only thing that irritates me is when Auntie Heather tickles my feet. She should at least wait until I can focus on her better, so I can plot my revenge. At least tonight she was nice, and just held me and rocked me a bit while I slept. I was still cooing--I was dreamin' of Mommy.

Peek-a-boo!

Today I look 20 times better than yesterday. My breathing tube is gone; I'm still on oxygen but they keep decreasing the amount since I'm doing so well on my own. They've taken out one of the drainage tubes from the incision since it no longer had anything to drain. The other one will probably come out tomorrow. They've taken out more stuff too and will continue to do so overnight.

When Mommy came in, I heard her talking, and peeked out a bit. I'm still sleepy but I wanted to say hello! I know Mommy's voice pretty well. When I was just born, and laying in her arms, I was peekin' at her then too. I wasn't used to that bright thing called light but I had to check Mommy out! I knew she'd be beautiful! Today it was great to see her again.



My nurse Beth explained what all the wires and tubes were for. Those black things on my chest are the caps for the pacing wires connected to my heart. They are there just in case the doctors need to control my heart from the outside. The gauze covers the incision--Beth showed Mommy how well that is healing. You can see a few stitches and the plastic surgery tape that holds my skin together as it heals. It doesn't look all that bad!

I also wanted to say Howdy! to all of my fans! I'm really looking forward to meeting my big sister and my grandparents. Mommy, Daddy, the rest of my family and I have really appreciated all the support we've gotten from family and friends around the world. I couldn't believe how many different people have checked out my blog until my auntie showed me the little map with all the hits. Even people from Holland and Argentina have stopped by! Since I don't know everyone yet, leave a note for me so I can meet you!

Breathing easier

After hearing the good news, my Mommy, Daddy, and Auntie Heather grabbed a quick bite to eat at the X-Ray Cafe (I do not make this stuff up!). My auntie was so relieved that she sprung for a hot dog and fries. She's a vegetarian, so this was like the Fourth of July or something--a really special occasion where she feels she can justify eating--well, whatever a hot dog is. I haven't figured that out yet.

Around 4:30 I was ready for visitors, so Mommy, Daddy, and Auntie Heather came up to my room. My nurse Jessica showed them all the wires and tubes connected to me. I have a breathing tube, IVs in my neck, arm, and groin (one for medicine, two to monitor my vitals), two tubes to drain fluid from the incision area, a catheter so I can pee, a tube to drain my stomach (while I have the breathing tube in), and other stuff (you expect me to remember all this? I don't even know how to talk yet!). I don't quite look like a Borg (I am so much more handsome than that!), but there is an impressive array of tubes and machinery around me. I asked my auntie not to take pictures. I don't quite feel like myself and am just a bit puffy.

I must be very popular, because all kinds of people are bringing me gifts. My family brought me stuff today and Tuesday, and Mommy gave me some of the blankets her friends got for me. I even got stuff when I arrived at my CVICU room. This little teddy bear, blanket, and angel medallion are from the Maeghan & Heidi Heart Foundation, and the boxer puppy is from Santa Claus!! I picked the right time, eh? Santa comes early to the CVICU at Levine's!

Talking Heart-To-Heart

Since this is the big topic of the day, I wanted to update everyone on what's going on with my heart. When Mommy was pregnant with me, one of my early ultrasounds showed some anomaly with my heart.


My doctors feared that it would be a problem with my mitral valve in the left side of my heart--hypoplastic left heart syndrome, which means the left side of my heart would grow smaller than normal, making the mitral valve unfunctional or even absent. This is the side of the heart that pumps the oxygenated blood out to my body. If that happened, I would need up to 3 surgeries to fix it.

My due date was Sunday December 14th, and the doctors hoped I would grow as much as possible before I was born in hopes that the left side of my heart would catch up. They also wanted to be sure the right doctors were around when I was born, so they scheduled Mommy to be induced on the 15th if I didn't arrive before then. I heard them talk about it so much that when Monday morning came, I was ready!! Mommy's water broke around 4:30 am and her contractions started around 5:30 am. By that point we were on our way to the hospital. I had to go to the big hospital in uptown Charlotte, NC -- Carolina Medical Center Main. Their logo represents the tree of life, which I think is pretty cool. This hospital has lots of my doctors--cardiologists and surgeons, and the Levine Children's Hospital, which is where a lot of kids like me hang out to get better.

Mommy had a long day of labor, I guess I was having second thoughts or something. My Auntie Heather was with Mommy the whole day, along with Janey, her main nurse. I'll go into more detail about everything later but it was an exciting and tiring day. They did finally induce Mommy--hey, I'm not one to skip an appointment! At 6:50 pm I decided enough was enough, and out I came! The doctors were too late, so Janey delivered me, and Aunti Heather cut my umbilical cord. The nurses cleaned me off and Mommy held me for a bit while my ride to NICU (the Neonatal Intensive Care Unit) was on the way. Then I had to go get checked out by the cardiologist to see how my heart was.

Mommy got to finally eat some food while she waited. Then the cardiologist, Dr. Sturn, came to see her and gave her the news. The good news was that the left side of my heart had grown more, and I did not have hypoplastic left heart syndrome. I did have some birth defects in my heart that would need attention, though. The main issue was that my aorta was too narrow where it arches like a candy cane from and around the heart to take the blood to my body. This would restrict the flow of blood. Dr. Sturn called it severe coarctation of the aorta with arch hypoplasia (meaning it wasn't just pinched in one place, but was narrow for a lot of the arch). They would have to do surgery to fix this. Later the nurse showed Mommy a website, which shows what they do in the surgery. You can see it too-- view slides 1-3 at this link. They also said they would check to see if I had a hole in my heart, which I did. That is called a PFO or patent foramen ovale. I also have a biscuspid aortic valve, which means that the valve in the left side of my heart has two flaps instead of the usual three. This is not a big issue unless it makes it difficult for my blood to flow correctly. The doctors will keep a close eye on me just in case.

I spent my first few days in NICU. Since I was full-term I was the biggest baby there! Most of the other babies were preemies. They put all these wires on me to monitor my heartbeat and how well I was oxygenating myself. They also had an IV connected with my umbilical cord to give me sugar water and vitamins to keep me strong. Mommy and Auntie Heather had to scrub up and put on a funny yellow smock to come into the NICU to see me. I had my own setup with a bed and a warmer above it, so I could hang out in my diaper, the nurses could monitor me closely, and I could still stay warm. Other than the wires, I looked great. I did sleep a lot though. The doctors gave me a medicine to keep my PDA open until my surgery. The PDA, or patent ductus arteriosus, is an extra blood vessel that helps a baby's circulation while still in Mommy's tummy. It usually closes up after birth, but it would help me a lot until the doctors fixed my heart.

My surgery was this morning starting around 8:30 or 9:00 am. Dr. Baird was my surgeon. He opened my chest up from the front, and hooked me up to a heart/lung machine. Then he stopped my heart in order to do the surgery. By 11:20 they had fixed one problem, and I was doing well. Then they fixed my arch, restarted my heart, and closed me up. Dr. Baird came out at 3pm to tell Mommy that I was doing very well. I look great and my heart rhythm is back to normal. Everyone is very relieved! They are taking me to the Cardiovascular Intensive Care Unit (CVICU) where I will stay until I am better. The nurse warned Mommy that I would have a lot of wires and tubes, including some drainage tubes and a breathing tube. I might even be swollen and not look a lot like myself. But the tubes should come out within the next day or two. Mommy will be able to visit me in about an hour in my new room.

Well, I'll give you another update later! Right now I'm going to sleep this off...

My first few days

Hi! My Mommy just got home from the hospital. Both she and my Auntie Heather are tired and trying to get back into the swing of things at home. I'm resting up for my big day tomorrow--my heart surgery. We'll all post more later--the story of my birth, details on my heart stuff, but for now, I want to share these great photos of my family and myself. You can also view them here on Flickr. Enjoy!