Monday, July 18, 2011

Grey Bear.... then and now!

This is Grey with Becca.... he was likely about 2 months old here. There are definitely smaller pics of him, but I just love this picture!
My little Grey. Baby C. Littlest baby, likely the littlest embryo... but the biggest fighter of all. Grey was born in the same minute as Lillian. They popped out at the same time. Grey was a tad bit smaller, and because they didn't anticipate him being so small, they were unable to get the breathing tube in him. He required 2 minutes of CPR. He was small. 2lbs 1 oz. 13 inches long. He looked like a scrawny old man! Grey was the first that I held when he was about 3 days old. I held him in the neck of my shirt to facilitate bonding. I did this with all of them for almost 6 weeks. At 6 days old, he had his first bowel surgery. Weighing in at 1lb 13 oz... they took 1 cm of his jejunum out after having a tiny hole in his mesentary that connects his bowel to his abdominal wall. Just bad luck the surgeon said. 9 days after that, he had his heart surgery. He had a heart murmur that had to be surgically repaired because he couldn't have the medicine to help it. The medicine was hard on the intestines. About 3 weeks after that he had his second bowel surgery (7/23/10).
Not a day I even want to recount. 9/15 was another day that I would rather not live through again. That was another surgery.... the last of the ugly ones.
I cannot explain my relationship with Grey. It was guarded at first. I was always a little more worried about him. Even from seeing his little heartbeat in my belly. We loved that little guy enough on 7/23, to just say.... "Please God, if you are going to take him..... don't make him suffer..." amongst many tears and a impromptu baptism, and a surgery at the bedside in the NICU. I knew then that Grey, was going to make it, and indeed be something special.
He's gone through a lot. His intestines, his heart, infection, ear tubes, surgeries.... and add on to that liver failure. His liver failure was quite significant. It has since returned to normal function. (Livers are amazing... HE is amazing). Now, we battle his oral aversion, and eating issues. This is improving. The next battle will be his eye muscle issues. Since he was premature, had a rough road in the NICU, etc, etc, etc... it is common for babies to have eye muscle coordination issues. We tried glasses. They don't really work. Although cute... they aren't helping. The eye doctor said we would come back in mid August to see him, and likely schedule a surgery to correct his crossed little eyes. He said he is 100% curable, but sometimes it takes a few surgeries throughout their lives.
The child does therapy 2-4x weekly depending on the week. Becca was here a few times and stated that it was hard to watch him go through it. He GETS SO MAD during therapy. He doesn't want to do it. Becca and I talked about it, and I actually just laugh.... he is mad. He isn't in pain, he doesn't hurt. He is mad. If we didn't want him to get mad, he would be the same little man we brought home that doesn't even break gravity with his extremities. Becca is sick of hurting the little guy... and who could blame her. I had to remind her that she after all, was the one poking and prodding him... it's just our turn now.
I love that little man. He is a wise child. Crying when you touch him with an alcohol swab, or when he sees a white coat, or when he sees a tourniquet in the hospital... he is way to wise for his age. He is cautious, resistant, and all that he has gone through, he is trusting and cuddly and loving. Many of these thoughts and feelings I have put to rest waaaaayyyy in the back of my head, where I hope I never have to explore and relive again.
Grey will be the engineer in the family. He is very methodical at what he does, and how he does it. He likes to take things apart. If he could get that feeding tube out, he would in one swoop. He likes to uncap it, take apart the tubing to the pump, and pull it over to touch the bag. There is a method to his madness!
I think I am tougher on Grey... I've had to be. I do coddle him more, and yet at 1 year old, he is just now being put to bed at the same time, and the same way as Lillian and Owen have for months.
He is a tough little man. He will continue to do just fine. He is sitting up in his bed on his own, army crawling, and trying to pull himself up in his bed. He has come so far, and he won't be stopping any time soon!
This is after Grey's 9/15 surgery. He was very sick. Becca was giving him written affirmations that day. He DID get off the Jet Vent that day!
This was after his swelling had gone down after his final surgery. He was so jaundice from his liver damage.
Another one.... He still loves that pacifier!
This was their 4 month bday. He was on some very heavy medicine to help with narcotic withdrawl from all the pain meds he'd been on while on the ventilator.
This was the day we brought him home. The only thing he really did physically was smaile really big, and he LOVED to look at his fingers. He looked at his hands a lot!
Here he is on his 1 yr birthday! He is deep in thought of course.

1 comment:

  1. Crying.... I love you guys. And that man. After he started getting better I had him one day and he was grumpy. I tried everything but he wanted me fired. So I stripped him naked and put him in the sink. And joy and calm over took his face. I always remember how happy it made me feel to make him happy - not just to make my work load better - but to really make him happy was addictive.