NO TUBE!!!

So as I told everyone before Raef is having some feeding issues. When we left the hospital he was on a feeding tube, and has been until this past Friday. He is on such a strict schedule with his eating during the day and has a continuous night feed that he never had the opportunity to be hungry, so putting the bottle in his mouth was nothing short of annoying to him. He can suck and swallow.... so why wasn't he taking more from the bottle??? I would give him the bottle before I start a bolus feed and he would only take 5 or 10ml when he is supposed to have 6oml every 4 hours. He loves his passy, but when the bottle would go in his mouth the milk would come out and just wasn't the same. So on Friday I took his tube out and let him get a little hungry he did okay the first couple days but not where he should be at all. I was so nervous he was gonna loose all kinds of weight and thought I am just gonna put it back in since he isn't getting it. So I called my cousin Krystyna who works in speech pathology and she told me it took him 2 months to not eat from a bottle, so he isn't gonna learn to eat in 2 days. So I have stuck with it feeding him from a bottle every 2 hours and now.... he is eating 25 to 30ml. Which equals out to about 60 every 4!! He still has quite a bit of work to go with this, but he most definitely knows what hungry is and knows that the bottle is what makes that feeling go away.I am so happy, so hopefully it will continue to go this way. Keep him in your prayers because if this doesn't work the cardiologist recommended we surgically put a tube in his belly...and I don't want that at all!!!

So here is the rundown!

Well this may be a very long post but I have about 7 months of catching up to fill everyone in. In September of 2009 we found out we were going to be blessed with a baby. Pregnancy was going very well, a little morning sickness but nothing unusual. In December I was talking with my friend Erin who does ultrasounds, she said come by work one day and we will see if we can tell what the baby is. So I did it was December 3rd (Olivia's birthday) and I was 15 weeks, we did the ultrasound Erin could see the sex but we were gonna wait until Christmas to look! Yeah right that didn't happen the next night we looked, it's a boy!! We were so excited, I was extra nervous I had never been around baby boys. Then on December 6th my OB called and said that Erin had called him and thought she had seen some fluid around his heart and was a little concerned, that we should go see the high risk OB (which is where Erin worked). I was scared to death, but the doctor said sometimes this happens I wouldn't worry to much. So we were able to go the next day to have a more in depth ultrasound. Erin did her thing then she had Dr. Loderio come in and look. He then explained that for some reason the Right Ventricle was not developing normally. I was only 15 weeks so his heart was very tiny and he couldn't tell what was causing the problem. I have never been more devastated in my life, I felt so helpless that 1. I didn't know what was wrong with my child, and 2. that I couldn't fix it. We were told nothing could really be determined until I was 26 weeks. So we waited 11 agonizing weeks to see the pediatric cardiologist, Dr. Madhok. We went and had a fetal echo. After he looked and talked it over with the other doctor, Dr, Mehta he came and told us the news. Our sweet baby boy has Hypoplastic Right Heart Syndrome. Of course Scott and were so confused we had researched what little we knew on the Internet (bad idea) and knew that the outcome isn't always the best with this. Hypoplastic right heart syndrome (HRHS) is the underdevelopment of the right sided structures of the heart. These defects cause inadequate blood flow to the lungs. The major problem is pulmonary valve atresia (absence). This valve normally opens and closes to let blood flow to the pulmonary artery. Secondary problems are a very small (hypoplastic) right ventricle (lower chamber which normally pumps blood to the lungs); a small tricuspid valve (this valve allows blood to flow into the right ventricle) and a small (hypoplastic) pulmonary artery. Also, the blood flow into the coronary arteries may be abnormal causing damage to the heart muscle. So of course we want to know what we can do??? What is going to happen to our baby??? How do we fix this?? So Dr. Madhok tells us the only way for him to live is Open Heart Surgery, three to be exact. We would have to deliver at Vanderbilt University Medical Center and have the surgeries there. Surgery number one is called a B.T. Shunt. Babies are born with two connections that help blood flow. These are a foramen ovale (hole between the atria) and patent ductus arteriosus (or PDA, a blood vessel between the aorta and pulmonary artery). As these connections begin to close, the infant becomes critically ill. Because the blue blood cannot pass through the right side of the heart to get to the lungs, it crosses into the left atrium and mixes with red blood returning from the lungs. This mixed blood is pumped out of the aorta. The only way in which blood gets to the lungs is through the PDA. The PDA must be maintained open with medicine. Surgery is usually performed shortly after starting the medication to create an artificial connection (shunt) between the aorta and the pulmonary artery to deliver blood to the lungs. The second surgery is called a bidirectional Glenn (BDG) shunt. It is similar to - and is called a type of "Partial Fontan" operation. The bidirectional shunt is performed by connecting the superior vena cava (SVC) to the right branch of the pulmonary artery using fine sutures, and dividing or tying up the pulmonary artery. Now, venous blood from the head and upper limbs will pass directly to the lungs, bypassing the right ventricle. The venous blood from the lower half of the body however will continue to enter the heart. The last surgery is called the Fontan, it redirects the blood from the inferior vena cava (IVC) to the lungs. At this point, the oxygen-poor blood from upper and lower body flows through the lungs without being pumped (driven only by the pressure that builds up in the veins). This corrects the hypoxia, and leaves the single ventricle responsible only for supplying blood to the body.
I know, a lot to take in right? Well it was for us to, but we were slowly educated. So the pregnancy went on as normal, however there were several different scares with the baby they told us many times he wasn't even gonna make it. I am not going to go in to all of that, because he is here now and none of the awful things the doctors told us matter now!
In the meantime we had to name this sweet baby, and it was proving to be almost impossible. Until our good friend David was looking through the baby naming book with us and said "I like the name Raef, that's gonna be his name." Scott and I were not real sure on the name but both kind of liked it. Well it ended up being the only one we both could agree on. I told Scott I am gonna look again and see what it means, if it's nothing crazy that's his name. So I got on the computer , and started crying when I read the meaning. In Hebrew it means 'God Healed'. So I knew that had to be his name. God had really became a much bigger part of our lives through all this and I am so happy He has we could not have made it through the past 7 months without our Faith! So I felt as if God was telling me this was all going to be ok!
Thursday May 13, 2010 Raef Garret Hammerbacher arrives!! It was such a bittersweet day, we had been told so many times he would not make it to this day and yet we were there!! But still so unsure of what was gonna happen when he got here. He was born at 4:21p.m. he weighed 9lbs 1oz. 19.5in long! He was a big boy, thankfully! The NICU team was right there when he was born, they started him on the medication immediately and we were able to hold him for a few minutes, then they took him to the Monroe Carell Children's Hospital. Scott was able to follow him there but couldn't stay long. It was about 7 hours later we were allowed to go see him. He was doing pretty well, but it was horrible seeing him like that. He stayed there stabilized until Monday the 17th and he was taken for a heart cath everything went well with that but when they extibated him his throat swelled, so he had to be reintabated. On May 2oth the surgeon, Dr. Bichell told us they were going to take him about 7:00 that night for his Shunt. We were so ready to get this over with, but some emergencies came up so it got pushed until the 21st at 1:00. It took about three hours, then 2 more hours before we could see him. I thought it would be awful seeing him like that, but it was worse in the NICU. I could just see now how much more comfortable he was! Recovery in the PCICU was a little slow, his breathing is very fast. But eventually we were able to move up to a regular room. Feeding was an issue there and still is. Three weeks to the day we took him home! I was so excited we had been away from Olivia all that time and missed her so much!
So we have been home 6 weeks and it is going great! As I mentioned before we are still having feeding issues. We finally got a formula he can tolerate. But......there is still the feeding tube. We are working to get that out but so far no luck. He has developed acid reflux, so we are starting a new medicine tomorrow hopefully to control that. For the first three weeks we were home he didn't gain much weight only 5 ounces, but since we started the new formula he has gained 12 ounces in 3 weeks! Every ounce counts with these little heart babies. Today he had his two month vaccinations so he isn't a happy camper!
We have been so blessed by God that our sweet boy made it this far! We will go in the fall to have the Glenn. The Fontan will be when he is around two years old. So for now we just try to get rid of the tube and gain weight! I will keep everyone updated, thank you so much for reading my book, and keeping us in your thoughts and prayers!