Wednesday, February 17, 2010

NICU follow up

We had a NICU follow up for Nicholas last week. Anyone who has been in the NICU, especially for severe prematurity is given a follow up appointment to be sure they are on course physically and developmentally. If there are concerns, they can be caught early and appropriate intervention can begin. (Alex actually did not need to go to this one because he is seen by the specialty clinic so he got to stay at home for a change and received some serious 1:1 spoiling with Nana which he LOVED).

The appointment consisted of Nicholas being seen by a neurologist, developmental psychologist, NICU physician and early intervention evaluator. Everything went well for the most part but the timing and sheer length of the appointment were challenging. Nicholas had woken up at 6am this day and the appointment started at 9am. I'm sure you can do the math but Nicholas was exhausted before even the first person came in. I hoped he would take a nap on the drive there, but that was evidently not in his plans. We were able to answer a lot of questions they had about how well he was eating, sleeping, physical and verbal milestones. Ofcourse there were some things that they needed to test and see for themselves. Well long story short he was hardly in the mood to do exactly what they wanted him to do and by the time the neurologist got there, was quite determined to nap and would not be woken up. The neurologist even tapped on several points to check reflexes and Nicholas largely slept through even this.

The developmental psychologist was able to do some testing before Nicholas was lights out. He said he wanted to see him have the ability to do tasks typical of close to 7 months adjusted, which is where he should be based on his expected due date. He thinks Nicholas is measuring just a little bit behind that but he said not unusual due to the length and severity of his NICU stay. He is confident that with a bit more time he will catch up. He also asked if Nicholas smiles or laughs. So you know he was definitely not getting the best of Nicholas. We had to laugh at this one. We assured him when Nicholas was actually "awake", thats ALL he does these days. He is such a happy baby now. It usually takes very little effort to get these from him, and in fact later shared many smiles and giggles with the NICU doctors who came in!

The neurologist seemed satisfied with the information we provided but obviously didn't get to see enough for himself. He wants to see him again in six months just to be sure there are no concerns.

The BEST part of the appointment was when the NICU doctors walked in. We recognized them right away and them us. It was the doctors who took care of both boys in their first week of life and multiple other times during their almost three and a half month hospital stay. I know how many babies they take care of so it was especially touching that they had tears in their eyes as they saw Nicholas and hugged us. They saw us on the "roster" some time before and made sure to bring their camera so they could take back photos to the rest of our NICU team. We were so blessed to have many doctors that made us feel comfortable, took a lot of time with us and our boys and felt we could put our whole trust in, and these two were a couple of our absolute favorites. Maybe its because they were part of it from the very beginning. Actually it was one of these doctors who before they took Alex in for his spinal closure had to go over every possible complication and ofcourse it was all very grim. Mark ended up getting so upset that he yelled at her and asked her to leave. Ofcourse these were not our best times, and ofcourse she understood that when we apologized afterwards but oh seeing them this time felt like coming full circle. (we learned awhile later that the doctors honestly did not expect Alex to survive the surgery due to his severe prematurity and obviously they were trying to prepare us). They ofcourse were disappointed we didn't bring Alex with us and we told them about him, shared photos. Alex's nickname in the NICU after a few short weeks of defying all the odds was "rockstar" by many of his caretakers, and he still us in our eyes.

Mark and I thanked them over and over again for all their care of our boys AND their parents at a very difficult time and left the appointment feeling as grateful as ever for how far the boys have come! We promised that when the cold/flu season was over, we'd definitely bring the boys in for a visit to say hello!

and here are our cuties now.......











2 comments:

cfallone said...

What a nice visit! Those doctors are amazing and isn't nice to be able to just brag about how great both boys are doing, especially Alex? I am happy for all of you :)

Jen Butler said...

Seriously could your kids possibly get any cuter???