Wednesday, December 28, 2011

December Update

I have been waiting to put together an update because Eli had his Echo, EKG and two month appointment today.
To catch up, Eli had his SoonerStart assessment last week. It was quite a process and exhausted him (and me!).
While he has made a lot of progress physically, like being able to hold his head up when on his tummy, he still ended up qualifying for SoonerStart care. He does not display a few reflexes, particularly the walking reflex. While he did not track for them (he has for me at times at home) he did however show excellent hearing. They will begin coming to the house in January for therapy sessions. In the meantime, we are to start working on grasping, reaching out, smiling, tracking and more tummy time.
Eli also had an extra appointment last week at the pediatricians due to an infected tear duct and a herniated belly button.This kid cannot catch a break. On a positive note, while getting some drops for his eye the doctor and I discussed his spitting up and constant crying. She gave us a script for Axid to help with the reflux. We started it Friday night and so far it has seemed to help. He still spits up. A lot. But his moments of painful crying have become fewer while his sleeping has become less fitful. Hopefully we are on the right track digestively.
Thursday of last week, Eli had his follow up chest x-ray. We are happy to report that the radiologist and the cardiologist both said the x-ray looked clear. This was a huge relief for us, as Eli continues to make his soft grunting noises so we weren't sure how his lungs have been progressing.
Today was the big day though as Eli's follow up Echo was bright and early. He did so well during the procedure. He made me look foolish when I told the tech how fussy he was and of course he ended up dozing in and out the whole time like a perfect baby.
He did better than I did. It's a slightly anxiety-producing procedure to watch your baby's heart on the monitor for almost a half hour. It is hard for someone like me to just stare quietly at that monitor without knowing what the tech is seeing in my baby's heart. I just kept holding in his pacifier and saying my prayers.
Eli proved me right when they took his blood pressure next. They take it from all four limbs and he was NOT happy about any of it. It was very painful and hard to get through. But afterwards, for his EKG he was back to being a perfect baby and breezed through it. I should have brought a bottle to help him relax.
The cardiologist said that while one of the holes in his heart has closed on its own, the other remains. She said about 20% of people live with this kind of hole. It may still correct itself and we will have to continue to monitor it. In the meantime, according to our pediatrician, Eli can go about living a normal life. He cannot however, ever go scuba diving.
The cardiologist also noted a bright spot on one of his ventricles. She said this is a calcification most likely due to all of the IVs,tubes and catheters he had in the NICU.
Because of this discovery, Eli will have to have a follow up Echo in February. She said she wants to monitor it to make sure it doesn't worsen.
Our pediatrician said that a calcification is basically a blood clot. She feels that Eli's body should be able to break down the clot on his own. This is what we are hoping for... and that the hole in his heart closes itself.
The doctors said it can actually take years to close on its own. I was also told that as he grows the hole will not and that it will most likely get smaller.
Eli will probably have to have yearly assessments of his heart and eventually if it doesn't fix itself, we will make a decision about repairing it.
Thinking positively, the doctors said it does not effect his oxygen levels or functioning. So I feel like today has been a positive one. Eli's EKG looked good and we will continue to keep tabs on everything else.
We wrapped up the day with his two-month vaccinations. He now weighs 11 pounds and everything went as can be expected.
A few shots, followed by lots of crying, followed by lots of nursing.
I told Eli it was ok to eat through his pain.
Hearing his cries, one would never have imagined this baby dealt with a diminished lung capacity. And while I wouldn't mind catching a few more hours of sleep, I sometimes catch myself smiling when his tiny face is pink with a raging cry because I know there was a time when he could make no sound at all.
Scream on, Eli.


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