Saturday, October 23, 2010

Day 116-120 (July 5-9)

DAY 116--Well, Martin was bumped down to 2 1/2 L today. if he tolerates that well, (keeps the O2 below 50%) then they'll keep him there. If not, he'll be put back to 3L.

We worked with the paci a lot today. It's hard, because he's not tolerating it very well. He gags whenever anything is put in his mouth. Eventually he'll take the paci, but it takes a lot of time and patience.

They also took his summer time baby pictures. Like when he had his pictures take with the bunny ears, they put on the wall, these are pictures of the babies when they're all decked out in summer outfits. He looks like a little train conductor. We better not be here for the next set of pictures. . . .halloween. . . .

DAY 117--

I love this picture. Martin's just totally sprawled out in his bendy. Yeah, that thing ain't containing him no more! :)

His feeds were increased to 5 7mls, and he's tolerating it pretty good. He was awake and happy for a while, which was awesome!! He played with Vickie, one of the OT's, and with Teri, his nurse for the day, and just a happy boy.

We created a plan to get him home. His g-tube can be put in at the bedside, so he doesn't have to be transferred to the Children's Hospital next door. They're hoping to just be able to sedate him, and not have to intubate him. If by chance he DOES have to be on the vent, the doctors who know him best can help get him weaned off it fast. With martin's lung condition, we're afraid he can become dependent on it very quickly. He already works so hard to breathe, that given the break, he'd probably welcome it.

He will be coming home on a high flow oxygen system. it's one of those things that rarely happens, (like the gtube) which means Martin thinks he's got to give it a try. "Never happened in this NICU? Well, let me show them a thing or two. . ." Apparently the Children's Hospital has done it before, so they're trying to get it worked out for him. He'll also continue with the nebulizer treatments at home. They said it's good to have on hand, because if he gets sick he's probably going to need more treatments to keep his lungs open.

That's as far as the plan's been worked out, but it's a plan!! Maybe Martin won't be the first toddler in the NICU.

DAY 118-
Martin's feeds were bumped down to 26cals.  It's awesome!  He's just gaining weight so great, he doesn't need as many extra calories. 

We're still trying to get the GI Doctor to come over and talk to me about everything.  Hopefully it will happen soon.  The sooner the better!

DAY 119-
THE PLAN IS SET!!  Finally. 

I thought it would never happen.  The gtube will be placed on tuesday the 13th.  If they can get Martin's home oxygen system figured out, he could be home in a week, the 21st. 

My birthday.

How awesome would that be?!

I went to the Parent-to-Parent group tonight, it was so nice to spend time with the other moms.  We've become so close to each other, as we all struggle through everything. 

After the group, I went in and met Brandy's miracle girl.  She was born weighing 15oz.  Brandy actually lives close to me, and we were at the same clinic, and transferred from the same hospital.  It's nice to have that little bit of connection with someone else here.

Her baby is beautiful, and so so so small.  It makes Martin seem like a giant.  And it makes me count my blessings that we stuck it out on bedrest for so long, otherwise he could have easily been the size of her girl.

DAY 120--

I finally got to met the surgeon today.  He's a very nice man, and he explained how the surgery will go.  he actually drew me a picture.  Basically they'll sedate him, and put him on the ventilator (which scares me, considering how hard it is for him to breathe anyway, I'm worried he'll have a hard time getting back off the vent!) and insert a little flashlight/camera down into his stomach.  They'll find the right spot and cut from the outside.  Then attach something to the light, pull it back out.  Attach the gtube and pull it back into his stomach.  It ends up opening up inside his stomach, about the size of a quarter, and that keeps the tube in his tummy. 

I'm trying not to think of it too much.  But I have to think about it, otherwise I start paying attention to the other babies.  There's a set of triplets in the same room as Martin right now.  Well, two of the three.  The brother was transferred to the Children's Hospital because of a serious problem.  He's being transferred back though, because there is nothing they can do for him.  They're bringing him back to spend some time with him sisters before letting him go.  It breaks my heart, and I hope we're somewhere else before that happens. 

They're still working on getting the high flow system figured out for home.  I hope it gets figured out soon!  It's frustrating just playing a waiting game. 

Martin also weighed in at 8lbs and almost 10oz!  He's growing good!  They increased his feedings to 60mls a feed which is awesome!