Week 7 – Neurology, Cardiology, Ophthalmology, & Finding Our Own Voice

On Sunday morning, I started the week with a routine I’m getting used to but can admit I’ll never be comfortable with – Andy packed up and headed back home to NC. At least this time he had company- my cousin Jordan was on the same flight back to NC.

Nicholas started (and ended) the week this week on the CPAP machine. Thankfully though, he was now breathing much, much better than he was the previous week. Watching his small (but growing!!) chest rise and fall with each breath you could tell he was getting stronger at breathing on his own. He was still (and may very well be for the rest of his life) a shallow breather. With Andy’s asthma and my own recent realization through Nicholas’ stay at the NICU that I am a shallow breather as well, Nicholas might just come by his shallow breathing honestly. Nicholas spent the week breathing room air on the CPAP machine, only using the machine to provide pressure support for his lungs.

On Wednesday, Nicholas was visited by the neurology, cardiology, and ophthalmology teams. He had a follow up cranial ultrasound (his 1st was when he was just 5 days old) to see how his brain was developing and to chart any neurological issues that may have developed over the past 7 weeks. The scan, again, returned a negative reading – letting us know his brain was developing without any issues now or in the foreseeable future.

The cardiology team paid us a visit after our primary nurse detected a slight heart murmur on Nicholas earlier in the week. Through an echo cardiogram, we learned that Nicholas has a ASD heart murmur – a type of murmur that will clear up on its own when Nicholas turns 12 weeks old (40 weeks corrected/ at his original due date). In short, if Nicholas would have been born full term, this murmur would have cleared up instantly with his 1st breath in the world. Since he came into the world early, this part of his heart isnt developed yet – but will correct itself. We also learned that Nicholas has an extra blood vessel that runs across one of the aorta valves. When I 1st learned about the extra blood vessel, Dr Lui (one of our neonatologists) was on call and reviewed the echo results for us. He wasn’t sure what to make of the notes on the extra blood vessel  but assured us that our primary doctor that week, Dr. Faisal, would follow up on the notes the next morning and would let us know what to make of the finding. It turns out that the extra blood vessel is just “one of those things” some of us are born with.

Lastly, on Wednesday, Nicholas had his 1st eye exam. His eye exam was much like the eye exams you & I are used to. They dilated his eyes and checked for vascular growth (or lack thereof) and any abnormalities that can come with premature babies. We learned early on that when babies are on oxygen their oxygen saturation levels must be monitored closely because too much or too little saturation can lead to issues with eye development. Nicholas’ eye exam returned a near perfect score or result. (We have learned in the NICU that most tests come with scores in lieu of pass/fail results – and since Andy is such a numbers guy, this is information he asorbs quite easily). After Nicholas’ eye exam he was required to wear his ‘sunglasses’ (black foam eye coverings) for 24 hours. I think it was harder for him to wear the sunglasses than it was to actually endure the eye exam – he absolutely hated them – and showed it by continuously pulling on them (while screaming!) until he got them off (and suddenly, his screaming would stop!).

Speaking of screaming,with Nicholas’ increased lung capacity has come his voice. A voice much like his mama’s in that, when he isn’t happy, he will let you (and everyone within earshot) know. He really found his voice this week. As I sat with him through several “Look how loud I can be!” episodes, the NICU nurses who know him so well kept walking by listening for where the cries were coming from and when they got to where we were sitting would surprisingly ask “Is that really Nicholas? It can’t be”. Oh, but it was.  But it was.

One of Dr. Faisal’s goals this week was for Nicholas to pack on the pounds. In addition to his increased feedings and his ‘baby protein shakes’ Dr Faisal added in fat supplements to his diets. (On a side note, wouldn’t it be nice to have a doctor say to you “Here. Eat more fats. You need it. You deserve it. Eat. Eat. Eat.”?). Nicholas was burning calories learning to breathe and as of right now, has not inherited his mother’s ‘I just looked at that bagel and gained 3 pounds’ metabolism. Dr. Faisal would like Nicholas to gain approximately 1 pound in 1 week – a goal that seemed unlofty at first. Nicholas began the week at 3 pounds, 6 ounces. In the just 7 days that followed, he was up to 4 pounds (having gained 10 ounces!). We know that for the doctors, its a numbers game of determining caloric input versus output, which is a game they are very, very good at. I didn’t think that type of weight gain was possible so quickly but, I am thankful it was. We know that with continued weight gain, the rest of Nicholas’ motor skills, brain and lung development that is necessary to come home will come naturally. Let the weight gain continue!

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