Davis weighs 14 pounds 3 ounces and is wearing size six month clothes. He's in the 30th percentile for weight and the 3rd percentile for height. Proportionally, he's in the 87th percentile. That's a nice way to say he's short and chunky. He's gaining weight at the appropriate rate, even gaining too much despite the nutritionist reducing the calories to 27 per ounce. His nutritionist has since reduced the calorie count to 24 per ounce. The reduced calories also make it easier for him to tolerate his feeds.
As mentioned in a previous post, Davis received his two month vaccines. Shortly after receiving his shots, he had the typical fever and fussiness, but because of his cardiac output, it lasted a little bit longer and even required going back on oxygen for a few days. The doctors decided it would be best to increase Davis' cardiac output, so they increased the rate of his Berlin from 80 to 85. Additionally, he started throwing up more frequently. Not tolerating feeds is a common sign of heart failure. The body sends blood to all the major organs (brain, kidneys, liver), meaning the stomach does not have the blood flow it needs to do it's job. The nutritionist switched his formula from Enfamil Gentlease to Simulac Alimentum, which is easier on the stomach. They also put him on Prilosec and Zantac to help with reflux. All of these changes have helped; Davis has the typical normal baby spit ups with occasional vomiting.
Davis had another swallow study this month, and finally, he passed! I was quite nervous that he wouldn't even participate this time, because he had not shown any interest in a pacifier, but once he figured out something was coming out of that bottle, he figured it out real quick. It was such a relief to see him sucking from a bottle! Davis did not pass for the thinnest consistency, but he did pass for solids, and we can thicken his formula with rice, so he can take it from a bottle. I was disappointed he didn't pass for the thin consistency, but was so proud to see how far he has come. Passing any part of the swallow study meant he was one step closer to being a "normal" baby. This mama cried tears of joy!
Davis loves sitting in his recliner!
His favorite part is visiting with all his friends who stop by to chat!
Unfortunately, bottle feeding has been somewhat of a struggle. Davis did great in the beginning, taking nearly an ounce and sucking the bottle dry. Then he just quit. Flat out refused to take a bottle, a paci, anything. In fact, it was almost like he had developed an aversion to the spoon, nipple, or paci. He could have his whole hand in his mouth, but gag if you touch his lip with the paci. It was very frustrating. Solid foods have been about the same as bottle feeding; it's hit or miss. He's tried avocados, bananas, and sweet potatoes. His favorite so far has been bananas. We were able to get him to take about 8 mLs at one point. Right now, we are taking a step back and just focusing on getting him to take the pacifier again.
It's already Christmas at Children's!
I couldn't resist a snap in front of the tree!
This kiddo thinks it's funny to pull out his feeding tube!
It's not so funny when his nurse has to put it back in! :(
The good news is we are moving up on the transplant list! We actually had an offer last week, but we were unable to accept. Davis has only three percent antibodies, which is great, but this particular heart had a particular antigen that one of those antibodies would have attacked, making the risk of rejection higher. Our bodies don't develop antibodies until we are about a year old, which is why Davis can accept a heart of any blood type. So how did Davis develop these antibodies? The doctors think he probably received the antibodies from the blood products (blood transfusions, platelets) he received earlier on. The doctors knew this was a risk, but he needed the blood and platelets to save his life. They told us they would have accepted the heart and gone through with the transplant if Davis had been sick in an effort to save his life. As hard as it was to turn down this heart, we knew it was not the heart for Davis. We are thankful that God has given Davis strength and has kept him healthy and infection free, so that the doctors don't have to consider performing a risky procedure. When we pray, yes, we pray for a heart, but we also pray for the perfect heart for Davis. We know God is working on that, and we thank him for answering our prayers and keeping Davis safe. Sometimes God has to say "No", because He's working on a bigger "Yes!".
Amanda
