9 Days Old

This is Caelin under the bili lights.

Caelin had a pretty good night last night. He had to get his lines changed which agitated him because it takes a little over an hour to get everything situated. It is so hard to watch him get upset because his little eyes squint, his muscles stiffen, sometimes his chin quivers and his mouth opens trying to cry but nothing comes out. But other than the changing of the lines, he had a pretty good night.

Over night his bilirubin level rose up to 19 indicating jaundice, so he had to start the bili lights and blanket (phototherapy). The doctor said the jaundice is unrelated to his heart condition because it does happen to many healthy infants typically within 72 hours of birth; however, he did not start exhibiting signs of jaundice until after his surgery. So we believe the procedure may have had something to do with its onset (possibly not having eaten, being on bypass, or getting blood transfusions and lipids- but we really cannot be sure).

Other than having to be under the bili lights, Caelin had another great day marked with milestones. They began weaning Calcium. They also began weaning oxygen and respiratory from the intubation machine. The respiratory specialist said she cannot remember ever weaning a baby so quickly who just had his chest closed from the Norwood Procedure. I felt proud from my head to toes and my heart skipped a beat- my little baby is already setting records and making such an impression and he is only 9 days old!

Interesting Sidenote: On Tuesday I was wearing a "Walled Lake Western Girls Basketball T-shirt" and the respiratory specialist noticed it. She graduated from Walled Lake Western in 1991! What are the odds? No one outside of Walled Lake ever knows about Walled Lake!! haha Such a small world!!!

Second great sign for today was an increase in the TPN concentration to have more nutrients and to be dispensed faster. In addition to the TPN, Caelin started breast milk feeding today! Although he detested getting the feeding tube, his tummy is finally able to get some substance! He is only getting 3 mL/hour, which is not very much, but it is better than nothing and it's best for them to start him on it slowly. These two things will help him pee more and start pooping which will help his bililevel drop and hopefully get rid of the jaundice.

Since he is feeding, he got the Foley catheter out today, too! So although he hates diaper changes, it is much better for him to fuss through a diaper than to continue to have the catheter.

Overall, he had a very big busy day. He had a lot of moments where he was not happy with the nurses, but we try telling him that everything they are doing is to help him get well. Although he may not understand what we say, Mommy and Daddy are able to soothe him pretty well these days through singing and positive touch. He loves to hold our fingers and to have the top of his head cuffed in our palm. He also likes his eyebrow line grazed and his temples lightly massaged.

Our baby Caelin is so adorable and powerful... never ceases to amaze us!

Keep checking back for more updates on the recovery of our resilient and inspirational miracle.