Whats important

Today was about Miles. After being born at 30 weeks, he spent 46 long days in the NICU. While he has grown and thrived, we almost forget that he was a preemie. That we spent the first year watching his every development and comparing him to his peers, worrying that he didn’t crawl until he was a year or walk until he was 18 months old. Because he talks clearly, jump off stairs, read books, complete puzzles, counts to 30 and knows how to use my iPhone, I want to believe it is all in the past.

Today was our third and final follow up at the Whitney Clinic. The first was when he was 8 months corrected (based on when his actual due date), the second when he was 18 months corrected and this one at age almost 3. We meet with a nurse practioner, child development expert, neurologist and social worker which makes for a long morning for a little one. Up until now, it was clear, he was not quite where his peers were but overall, there was no cause for alarm. According to the neurologist, he wasn’t close to being on the [autism] spectrum and though behind he was right on track for his corrected age.

That was until today. I watched in amazement as my miracle child under the direction of a child development expert, completed puzzles games for 4 year olds with the concentration of a 5-year old. And as any almost 3-year old would do after 45 minutes of concentration and being woken up too early, he started to get over-excited which in Miles world is hyper-active. This led to the next part of the evaluation of gross motor skills in which he ran the hallways, kicked and threw a small purple plastic ball and climbed up and down stairs, stopping only to jump off the highest one. Exhausted and over-stimulated, he flopped to the ground leading the therapist to comment that he still “tottered”.

This led to her sharing her concern that he is very behind in his gross and fine motor skills and suggesting that he get Occupational Therapy (OT). Later the neurologist suggested he might have apaxia (a disorder of the brain and nervous system in which a person is unable to perform tasks or movements when asked, even though: The request or command is understood). This was after Miles was pronounced Lalala as WaWaWa. I commented that as a child I had a lisp and had speech therapy. He responded that I probably had apaxia as well and really it was not a big deal but as parents, we need to be aware so we can help him as he deals with these issues. He too suggested Occupational Therapy while sharing that Miles is a precocious, intelligent child.

I was expecting this last appointment to be the icing on the cake, not that my son needs expert follow up. I don’t want to hear that his prematurity is still affecting his life. He is thriving, isn’t that enough? Cant we just move on already? I say this knowing just how unscathed we’ve been compared to our NICU cohorts. Still its just another reminder of  a time I’d like to forget. We will get a final report in a few weeks with a formal recommendation for OT.

This afternoon Miles screamed at me to push him “faster, Mommy, faster, like a rocketship” on his new swingset.  A reminder of how lucky we are even if he still totters and asks for a wuwuby before bedtime.

Going back to Denver!

Well, looks like we are still in this race. The call with the CCS results came today - a week early. Out of four blasts, we got one normal. Woohoo! Of the other three - one was T21 or Downs, T16 - would have been a miscarriage and 1 was what Dr. Surrery called chaotic. While I would have liked to have more normals, learning this just emphasized why the CCS is so important. That T21 embryo looked great and at UCSF they might have chosen it, unknowingly, and if it implanted, I would have been back at square one two years later and out another $30k.

In the world of IF, its hard to plan ahead, even a couple months. Coincidentally both my parents, my sister and brother planned to be in Denver for Thanksgiving. We'd hoped to be able to join, do the transfer and celebrate Miles' third birthday on the 25th. But not wanting to jinx anything, we hemmed and hawed if we'd make it so it feels good to have a plan for at least the next two months.

So we are cautiously optimistic. Dr. Surrey gave us 50% odds of success. A flip of the coin. Last time I heard those odds, it was the likelihood that my second pregnancy would result in a live birth. We know how that ended.