Yesterday was Lincoln's third follow-up appointment with Newborn Medicine at the hospital. My mom came with us again to help out with keeping Lincoln happy during the car ride. Lincoln actually did much better in the car than he ever has! He only cried for a few minutes at first but was ok for the rest of the ride! Actually his demeanor for the whole trip was much improved compared to last time. I'm so happy he is getting better.
Lincoln was weighed and measured when we arrived. He is now 23.5 inches long (1.5 inches longer than last visit), 11 lbs 3 oz (4 oz up), and has a head circumference of 41.5 cm (almost up 1 cm). The doctor was very pleased with Lincoln's progress considering the challenges of the past two weeks, including Linc's cold symptoms, decreased feedings, and mild jaundice. She said it was great that Lincoln was able to go through all of that without desaturating. She told me that a lot of times a catching a cold for a child with CDH means re admittance to the hospital because the child cannot make due with the support provided at home. She are pleased to see that Lincoln's cold symptoms have already cleared, for the most part, and that he had managed to maintain his weight (and actually gained some too) over the past two weeks.
The doctor looked Lincoln over and listened to his lungs. She said she can still hear a difference from the left to the right lung, but that both sound very clear. She was happy with his improved muscle tone and temperament. She also watched as I fed Lincoln a bottle. Since he was hungry, and he has had trouble finishing bottles, she took the opportunity to check his work of breathing during feeding. Lincoln has always gotten a little winded while eating and needs breaks throughout feedings, even when turned up on his oxygen flow. The doctor was happy with the way he ate, and said that his feeding problems lately are most likely due to him having a cold. She expects he will continue to take bigger volumes per feeding as he feels better, and should be back to full feeds in a week or two. If not, I should call her. She thought his jaundice was mild and needed no further attention.
The doctor did not make any changes to Linc's meds or oxygen. So he will continue to be on an oxygen flow of 0.8 liters per minute (or approximately 0.75 since I cannot set his meter to exactly 0.8) and turn him up to 1.25 for feedings. He will also continue with pepcid for reflux, sildenafil for pulmonary hypertension, and morphine which is almost weaned. She reminded me to watch for withdrawal symptoms for up to a week after discontinuing the morphine (loose stools, fever, vomiting, shaking). To help Lincoln get over this hump and back on track with weight gain, she suggested keeping Lincoln on the beneprotein supplement until we run out of the powder and to also mix his formula to a 24 calorie per ounce concentration. This way Linc can get more nutrition with the smaller volumes he is taking right now. She also suggested going up on the nipple flow so that Linc doesn't have to use so much energy to eat. She will reevaluate his diet next month when we see her again.
On a side note, I have switched Lincoln to a diet of all formula. It was too much to try to pump after feeding him, and I didn't want to risk him loosing weight during a period where we work on his latch for breastfeeding. I actually did breastfeed the first week after his oxygen wean, which is what I believe led to his jaundice. When he started having trouble finishing his supplement bottles that week, I decided it was time to throw in the towel. I am happy Lincoln was able to have breast milk for the first three months that he has been eating.
The doctor was able to show me Lincoln's x-ray from the 19th, and we also discussed Lincoln's overall expectations. I was happy to see Lincoln's right lung was the same size as his left and there is no sign of reherniation, which I had already been told but it was nice to see the xray. His heart is still pushed a bit to the left, but the doc said that was just fine. She told me to view Lincoln's oxygen as a medicine that he is on to help him develop normally, and not as a sign that he is ill. He just needs some assistance to be able to play and do his therapies until he can grow more healthy lung tissue. She said that some very premature babies that are on initially on a ventilator for several months may need oxygen support until 1.5 - 2 years of age. Lincoln was very sick while in the NICU, so his needed support is expected. She expects Lincoln to catch another cold throughout the winter and it will be challenging for him to wean. She will be happy for him to get to a baseline of 0.5 liters by the end of the season. She reassured me that both Lincoln and I are doing great.
Lincoln also had a follow-up with Genetics. This was just a formal follow-up for the tests that were performed while Lincoln was in the NICU (similar to his Endocrine visit). Since Lincoln was born with two abnormalities (CDH and Hypospadias) the geneticists ran additional chromosomal testing to look for a link. All of Lincoln's genetic testing came back normal and so they do not have a genetic explanation for his conditions. Since so much research is being done currently on CDH, they would like to see Lincoln again in two years to check in on him and to let me know of any genes that have been identified as linked to CDH that they could test for.
After Lincoln's appointments, we headed upstairs to visit Lincoln's favorite NICU nurse and OT. It was nice to see them and they were so happy to see Lincoln and that he is doing well. They told me that in the two months that Lincoln has been discharged, they have had two CDH babies who both passed away, one of which was on ECMO for very long. They now have a third baby that is less than a week old. It is amazing how quickly I had begun to forget how close we were to losing Lincoln. I tear up now remembering those days in the NICU of the ups and downs and thinking of the other families going through it now. I can only imagine the pain of those two families whose children didn't make it. I wish the best for the CDH baby fighting for his life now and the families will be in mu thoughts. I'm so grateful to all the doctors and nurses and staff that had a hand in seeing Lincoln through, and especially all the support Lincoln received from family and friends. I may not be especially religious, but I definitely believe in universal energy and the impact of positive thought. This year has been such a challenge for my family, and it is just wonderful to stand back and see where we are now...together.
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