Friday, December 16, 2011

Next to Normal

Amid all the craziness of life it gets very difficult to keep up with all of this and everyone.

My little (er, big....) family feels like a normal(ish..) family finally! I feel like the NICU days are a thing of the past and I have an amazing and loving toddler and 2 wonderful baby boys. I am happy to say that Dacember holds not a single Dr's appointment for the twins! While this sounds like such a simple accomplishment, it felt damn near impossible only 3 months ago when the boys first came home. Yes, I said 3 months ago! Tomorrow is the 3 month anniversary of the day we finished our NICU stay and brought Trev home!!!

Typically with a baby, every new accomplishment is filled with joy and excitement as parents get to watch their little one grow and learn about the world. Babies who are born prematurely and thrive in the NICU and are discharged are not in the clear with their health. They are at a greatly increased risk of having numerous disorders. Every little normal accomplishment (smiling, eating, rolling over, sucking thumb, kicking both legs) is now so much more than a milestone where I get to watch my boys grow. I watch them accomplish new things and I feel like I am watching them overcome the odds. It's a wonderful thing to see positive progression of their development! And both boys so far seem to be right on point with their growth!

Dax loves to beam his smile across the room and cannot get enough of people smiling back at him. Well, until he's had enough. Then he will let you know! When Athan got tired as a baby, he simply stopped playing and went to sleep. When Dax gets tired, it's everyone's problem until he falls asleep! However, he doesn't want you to feed him, burp him, cuddle him, wrap him, talk to him, hold him or put him down until he is asleep. He LOVES his swing. When he gets his screaming/I'm tired moods, sometimes the only thing he likes is the swing. We can hold him and make the exact same motion while swinging us in his arms but it is simply not the same in his eyes. I think it is just too much stimulation for him perhaps.

Trev finds so much satisfaction in sticking his tongue out at people. It seems every night, after I get home from work, the first thing he does is stick his tongue out and then smile at me. I predict he will be the shy one of my children as he is very specific as to when he chooses to talk to us and when he just wants to look. When Trev was born, he appeared to have a receding hairline and very thin hair. I assumed he got my side of the families hair traits. Then, one day, I woke up and it seemed that hair had sprouted overnight. Suddenly, I saw a little baby Matt head. It's so cute!

We have good control of Trev;s blood pressure now with medicine still. Our last visit to his nephrologist went well. While his BP is still elevated, a healthy blood pressure increases as you grow. Since he has done so much growing and his BP hasn't been increasing, it is technically getting better. We checked it today and he was at 101/49. Much better than in the past.

We went to Shriner's Hospital for Children in Sacramento last month to speak with a specialist about Dax's spine. All I can say is WOW. Shriner's is an amazing resource with amazing people! I have never had such a wonderful experience at a medical facility before. We arrived and checked in and someone escorted us to the lobby, which is gorgeous. Then we saw a resident Dr. first and shortly after, the attending Dr. She ordered a new round of X-rays and we were escorted to the X-ray department. We waited, maybe, 3 minutes in the waiting room for X-rays and then went back to the Dr who had the X-rays already. All in all, we spoke to a specialist, got X-rays and followed up on them within maybe 2 hours. Can you imagine that at any other hospital?? Nope! And it's completely free!!

Anyhow, I expected to see the specialist and get an idea of when she planned to perform surgery to fix his spine. Instead, she tells us that many children with spinal abnormalities grow with a perfectly straight spine and that his is currently not showing any curvature. The plan is to continue X-rays every 6 months as he grows and watch for signs of curvature. If it happens, we plan treatment then. He may never need surgery! Time will tell!

I have so much to be grateful for this holiday season! I hope you all have a wonderful Christmas and a Happy New Year!!

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