| Saturday, June 11, 2005 |
| serious--part 3 (it's the last part!) |
So Baby J was on his way to Riley and I still hadn't been discharged. There were doctors to be called, papers to be signed, pain meds to be prescribed. (!) Bubba had to get things smoothed out in town, pay bills, take the dog somewhere to stay, make sure the kids had somewhere to stay. My oldest sister, Nursey and my Mom and I headed down to Indy.
A place of miracles. 
We soon learned that the NICU waiting rooms would become our home away from home. There were tables and chairs, big brown recliners, small kitchens, bathrooms, lockers, phones, tvs...all in the 2 waiting rooms. We saw so many other families just like us, waiting and worrying.
Baby J was in Module 3. Each module was just a big long hospital room with 5 or 6 babies along each side. There was a nurses station just inside the door of each one. As the parents, we were allowed to come and go as we pleased. Hand washing became more than a routine. We were allowed to bring one person in with us at any time. Then, we could also sign a paper giving 3 people permission to be in there without us. That first night is such a blur. Bubba stayed with Baby J almost the entire night while I tried to get some rest in one of the sleep rooms. I ended up dozing for a bit, but unable to get comfortable, I found my way out to one of the recliners where Bubba happened to be. I think he told our life story to the nurse, Lindsey, that night. That first night there, the doctors were very good about letting us know what was going on. We rarely saw the doctors after that. The ones to be commended for their hard work and loving touch were the nurses! A better group of ladies you would be hard pressed to find.
The Module. (sounds all space shippy, huh?)
At Riley (and at our home hospital before he was moved), Baby J was on "minimal stimulation." In other words, we were not to talk to him, rub him or anything like that. We were barely allowed to touch him for fear of disturbing him. He wore little "ear muffs" and had a towel laid over his eyes to keep the light out. A three paneled screen was put up around his bed to keep the noise out. (His was the first bed on the right when you walked into the room.) That was hard. It was hard not to talk to him. Hard not to touch his soft skin or rub his little leg to soothe him. It drove my mom crazy not to be able to sing to him!
Here you can see his "ear muffs" and you can just see where Bubba is holding up the towel so we can get a picture.
One thing I must mention here is something that scared us to death from the moment we got to Riley. The ECMO. Basically a heart/lung bypass machine that if Baby J didn't get better, he would have to be hooked up to. For days, possibly weeks. The risks involved were scary. We didn't want it to come to that. So, we watched and waited and learned more about O2 sats and numbers on a ventilator than we ever thought we would. Every minute that he improved, meant he was that much further away from the ECMO. That first night and maybe the second day, it was touch and go. His sats would get better, then get worse. They'd up the Nitric Oxide, then lower it. They gave him surfactant (something usually given to preemies) which seemed to actually make him slightly worse than better. He didn't tolerate that well at all.
The next day, I think, we finally got a spot in the Ronald McDonald House. It was a godsend! Thank God they give priority on the waiting list to mothers who have had c-sections. The RMH is such a wonderful thing. You get a room almost like a hotel, though you have to share a bathroom with another room. You are responsible for keeping the rooms clean and the bathroom clean. They have laundry facilities and a house kitchen with several stoves, refrigerators, sinks and dishwashers. A couple of times a week, dinner is provided by local churches and organizations who bring it in and serve it up sort of buffet style. Also, on any given day, you would arrive at your room and there would be a "care package" sitting outside your door, again provided by a school or other organization. The RMH is something I won't forget. We send donations when we can still today and always will. PLEASE...if you go into a McDonalds and you see those little donations boxes, drop your change in them. It is for such a good cause. I can't ever say that enough!
This is where we slept.
I will try to keep a long story slightly less long here by saying we spent our days sitting around the hospital, visiting Baby J, making friends with the other families around us, eating at the cafe in the hospital or at the McDonalds that is there as well. I thought I would never touch McDonalds again after that. We spent our nights calling the nurses to check on his numbers and see how he was doing. All the days and the milestones that he achieved run together now. I barely remember my own recovery. My mom likes to tell her story of finding a penny on the floor/ground every single day we were there. On the last day she was there, the night before Baby J got to go back to our home hospital, she found a dime. She thinks it was a sign. Perhaps it was.
The day Baby J finally got to come off the vent was HUGE! We were so nervous. Nervous that he wouldn't breathe on his own. I think this was day 6, maybe, at Riley. Like I said, it all runs together. But he did so well. No problems. He did have to be on a c-pap for a while, too. Now our focus shifted to his feeding. He had a tube into his stomach and we would hang his formula to drip in. After a certain amount of time, the nurse would then check his stomach contents to make sure he was digesting well. No problems there.
During all the time at Riley, Baby J had begun to hold water and was swollen. His head was big and squishy, I kid you not. Compared to the preemies all around him, he was GARGANTUAN BABY. Then, a day or two before he came home, he started peeing and pretty much didn't stop until he peed it all off.
Here you can kind of see how big his head was getting. This wasn't long before the vent came off, I think.
Finally, on day 7 at Riley, I think, maybe 8, I got to hold him!! For the first time! EVER!
Finally!
Baby J ended up being at Riley for 9 days and after that, they transported him back to our home hospital where he would be for 10 more days. He was in isolation for a day or two because he had a slight fever. But after that, we spent our days and evenings sitting with him, holding him, feeding him once he finally got the feeding tube out. He was the all time slowest eater. I look back at the pictures now and I looked like HELL! Circles under my eyes. Rough. It was a long 3 weeks. We watched his monitors and learned to check all the leads when the alarm bells went off. We got to give him his first bath in water. Most of the nurses I loved. The doctors were just awesome.
On the day he was 3 weeks old, we got to take him home. No monitors, no tubes, just baby. He had no visible signs that he had even been that close to death. Only the two little bitty scabs where the chest tubes had been. He has been fine ever since. The only thing we have to watch him for is signs of hearing loss. It's a side effect of the this whole ordeal. Nothing yet.
Getting ready to leave the hospital. See how tiny his head is here compared to big squishy head? :)
Baby J now.
Thanks for wading through this long story. I've wanted to tell it for a long time. |
posted by Angie @ 10:57 AM   |
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| 14 Comments: |
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whew! ;)
it's great that you remember everything... i think i blocked most of the stuff that happened to me and anya!
he really is a miracle baby! and he's lucky that he got you and Bubba as his parents... *hugs*
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Now you know I am sitting here, crying. Give Baby J and Bubba a big hug from Pineapple. And tell Bubba to give you a big hug from Pineapple too!
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I waited until you got finished with your story to comment. I understood far too much of the "hospital speak" from your story based on my own experience with my 3rd. Thank God we both have happy endings to our stories. (I couldnt imagine going thru that with a c-section tho! Youre amazing!)
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Wow. Thank God he's okay! What a special baby. No parent should go through that, but I'm sure the love is even deeper for it!
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By the way, Michele sent me...
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Looks like you have a fine young man there.
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Sorry to make you guys cry! :) Tara, hugs have been distributed!
PW, it does my heart good to get nice comments from you.
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That is such a sweet story and he is so adorable!
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Thanks for visiting my blog.
I cried through most of your second part.
Give that adorable boy an extra hug!
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yeah I don't think there is a dry eye in on this post :) Thank you so much for sharing your story. It was really touching. Thank God that you had a happy ending.. well I guess it's not over yet! baby J is adorable!
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What a beautiful baby he is; Thank God he pulled through.
Michele sent me.
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Oh Angie:
What a beautifully written series of posts. Thank God he is your little miracle, and looking so healthy and adorable in all the picures you post. My mom works as a volunteer cuddler in the NICU, and she tells me stories like baby J's all the time, and each time I sit on the edge of my seat as the weeks, months, and sometimes years pass for these babies struggling to make it to their first day of "real" life.
Wonderful series of posts.
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Thank You for sharing your story Angie
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whew! ;)
it's great that you remember everything... i think i blocked most of the stuff that happened to me and anya!
he really is a miracle baby! and he's lucky that he got you and Bubba as his parents... *hugs*