April 6 Post

Hello everyone,

Another Carter update...

He still struggles a little with breathing but it seems to become a little easier each day or two. He got kind of agitated tonight when a newborn was admitted (they were noisy as they moved the newborn from the stretcher to his NICU crib) so Carter was to be transferred to a quieter room in the NICU. However, in the end it was easier to move others and so Carter is still in room/bed 28. They also had to put him back on a sedative to calm him down as the noise really got to him. (Carter may not like loud noises apparently.) To help his breathing, Carter is still on the CPAP machine for respiration. The good news is that the IV has been removed from his hand (both hands can be held!) and one catheter in his belly button has been removed (1 to go!). He still has an IV in his foot too. He is making great progress.

He has been off his Dopamine (blood pressure med) and they have started feeding him milk through a feeding tube. They are giving him 2 tsp every 3 hours adding 2cc to each feeding. The 2 tsp drains to his tummy in about 30 seconds so his feedings are fast! I should look into this as a great time saver for my meals! However, he still receives the majority of his nourishment and calories from a bag using the remaining IV in his belly button. They will do more tests and measurements and the goal is to slowly wean him from the bagged food and move more and more to the milk. Tonight is also the last night for his antibiotics. More good news is that Carter has added 11oz to his weight (yea!) but they expect him to drop to his birth weight or below as he is weaned over to milk and then Carter should regain it.

We should receive the chromosome test results on Wednesday or so. This test should confirm his Down Syndrome and any other discovery they may find. Later in the week, we should receive a status report of his digestive tract. There is a 12%-15% chance of a defect in his digestive tract. At this point, it appears his heart is free of defects even though it is larger than normal. The heart is the most common defect in a Down Syndrome baby (approx 50%) so we feel blessed that his heart appears to be ok.

Moving to milk feeding with the mouth will have some challenges due to his tongue being larger and his mouth smaller (another characteristics of Down Syndrome) so they are trying several bottle nipple styles, sizes and softness to see which one is most comfortable for him.

Lastly, we truly appreciate all the prayers on behalf of our family. It is amazing and very helpful for our family to have a support group as strong as our immediate and extended family.

We love you all,
Alan & Kristi