Sunday, March 29, 2009

Getting dressed and drinking milk

Eli is doing very well, lately. He's been moved to the "less-intense" side of the ICU. His old room was in a set of rooms designated specifically for high-needs cardiac patients. Eli had to give up his room for someone with higher needs. He continues to build up his breathing strength, but he's been extubated for almost a week now. "He's on his own," as the nurses say.

He's also starting to take milk from a bottle. He's not great at it, but he's getting used to it. They give him as much as he'll take in 15 minutes, then feed him the rest through his feeding tube. The bottom end of the feeding tube, incidentally, has been raised from his intestines all the way up into his stomach. While he used to have a direct shot into his "gut," all his nutrition now comes through his stomach like the rest of us.

We've had the opportunity to change a few diapers. What an unusual blessing this is, to finally get to change a dirty diaper ourselves. Today, we even put some clothes on him!

The medical staff has always refused to give us times and dates, because Eli dictates them, they don't. So while we don't have actual numbers, it seems very fair that we should expect Eli home before Easter. This will raise a few new concerns we hadn't considered. Eli has to stay healthy. He has another surgery some time this summer, and to get sick before then could be a major set back.

This has led us to an unusual realization. We've tried very hard to keep everyone as updated as possible, through this blog. There are so many who are reading, and trying to stay informed, to let everyone know individually (letters, phone, whatever) would have been impossible. This blog has served as a wonderful piece of therapy for us, as well. The transparency we've been afforded has been great. In fact, we hadn't realized how tuned in most of you were until recently, when we started talking about holding Eli. We've been put into a really hard spot. We now recognize how closely you've all been following, and how attached you've become. So many have become excited about finally getting to meet Eli and hold him, and all those little things that make babies so great.

Having pulled you all in so closely, we're now forced to ask everyone to keep a bit of a distance, in a manner of speaking. There are two reasons behind this. First and foremost is Eli's continued health. The more who hold him, and love on him and everything else... the more chance he has of getting sick. In addition, he's still a little overwhelmed by human interaction. It doesn't take much to get him worked up. Then his heart rate increases, his breathing accelerates, and his blood/oxygen saturation begins to drop. You and we have red and blue blood, Eli has all purple. We're used to 97% oxygen saturation, he's used to 85%. When he gets worked up, it drops into the 60% area, and we've even seen it drop into the 40% when he's extremely worked up. When we get home, we're not going to have all these special monitors any more, and we're going to have to learn how to read him ourselves.

Between these needs, and his need to stay healthy, we're going to keep him a little isolated. We still intend to be in public, we're not turning into hermits. You should expect to see us at church every week, and at the grocery store, and so on. We don't want people to avoid us, by any means. We just hope we don't offend anyone when they ask to hold him. And this brings us to our second reason for some space... we need to figure out how to be a family, finally. What's going to happen with Paige, who's been a role model child with constant attention? What are sleeping arrangements going to be like? What will his needs be, and will Eli have special requirements?

To make a long story short (I'm not so good at that, am I?), we still need all of you. Please continue to call, write, and even visit us. But also please also give us some time to understand how to care for a very fragile little baby before we're as reckless with him as we were with Paige (I still laugh when I think of how much we used to scare some of our friends with how daring we were with her). There are always adjustments to be made with any new baby, his will just require more attention.

The pictures above are from today, when mommy was bottle feeding him.


Rachel Haire said...

Praise God!!!

Tamara B said...

I'm appreciating him at a distance for sure! How fun!

Aunt Cathy said...

We love you all so much! But we will send our love from a distance for now. We are so excited and thankful that you will now finally have a chance to become a real family.

Kim Wageneck said...

Happy Anniversary! It is clear that God is working in you both. May His strength, wisdom, endurance, courage and peace cover you.

Rebecca Parker said...

Dear Lord,
I pray for Eli's continued recovery, ability to eat, strength to breath and continued bonding with his parents. Please give Tanya and Jason strength as they prepare to take Eli home. Give them wisdom in how to care for him. Help them not to fear, especially that first night at home, please give them sound and restful sleep. Keep Eli in Your hands Lord so Tanya and Jason don't have to bear that burden.
In Jesus name,