No New News
We haven't said much lately because there just isn't much to be said. Alicia continues to hover around in not so fantastic. Her lungs are the issue for now. Once again they are close to giving her the steroids. She is very close to being two pounds. Oh, I just hate this. It's all just waiting. Waiting and not knowing how to respond. The doctors say this or that is happening and we have no idea how serious any of it is. Ugh. There's no steady progression on a path to better.
Alicia Grace is three weeks old as of yesterday. She would be 29 weeks gestation. She is not, however, as well developed as a baby born at 29 weeks gestation. She was born at 26 weeks, and the problems of a 26 weeker will be hers.
Do you have questions? Feel free to ask us questions here and we'll try to fill you in. Some common ones . . .
How long until Alicia comes home?
No one knows, of course. And there's no "normal" baby in this. If you need a time to put in your mind, think that it might be her due date. March 4. And hopefully it will be sooner than that.
What needs to happen before she can come home?
She needs to breathe on her own and have no major medical problems. She needs to be able to keep herself warm (that often starts to happen around 4 or 5 pounds.) She needs to be able to breast or bottle feed for all of her nutrition. Most babies start being able to suck strong enough for that around 34 weeks gestation.
You spend all day at the hospital, right?
No. I usually go during the day and spend about an hour. I'd like to start spending more time than that, but that can be hard to do with Toby and babysitter schedules. Josh usually goes in the evenings, but not every night since he has Toby and I to spend time with too.
What do you do when you see her?
I've held her three times only. Maybe in another couple weeks I can start to hold her more than that. It will depend on her condition. Every four hours the nurses do her "cares". If I'm there at that time I get to take her temperature and change her diaper. Other than that, I mostly just hold her hand and talk or sing to her.
Can we go see her?
Well, I'd rather not bring lots of people to see her yet, sorry. The grandparents go see her occasionally.
How's Toby doing?
I think he's lots better. We have friends visiting right now and Toby is just having a blast with these new people.
Does Toby know that he has a new sister?
Well, I'm not sure. We certainly show him pictures of Mama with Alicia. I tell him that Mama has another baby. Who knows how much sense this makes to him?
Do we need help?
Yes, and I think it's pretty well covered. We'll continue to need your prayers for a long time yet. And we really feel the benefit of them. Thank you thank you.
Michelle
posted by Michelle Fuller @ 5:47 AM
3 comments
3 Comments:
I'm praying, and watching for every blog post. I resonated with what you said about it just not being right - for her to be outside the womb, and for her and you to be so dramatically separated after months together. I'm glad you get to touch her sometimes, though, and glad for the care she's receiving. It's a long, long road, and so much of it is walked alone. But you are loved as you do it.
I want to thank you for allowing others to pray for you. You know how, when you see something happening, someone suffering, and you don't know what to do? I thank God that I have the privilege of praying for you. I know that things happen for a reason and I am in no way saying that Alicia Grace is the way she is so that God could bring people to their knees before him in petition for someone who otherwise would mean nothing to them, but that is exactly what she is doing. I lift you guys up in prayer every time I read a post and I am so glad you posted what needs to happen so that she can go home. It's like, okay, I have the right words to pray so that when that is done, I know God is working on that. I don't know what is going to happen, but the love that my family and friends have for you guys (Library Lizzie checks for updates as well) is only something that God can place in our hearts. We are praying and I am glad you can feel it!
We are still reading and praying, too. And we're illness-free, so if you need Toby-care this weekend, call and we'll work it into our schedule if at all possible.
I really, really know it looks like she isn't making progress, but her weight gain is great! And her PDA is all fixed! I don't want to invalidate what you are feeling about the lack of steady progress, but sometimes in this type of situation, it's easier to focus on what hasn't happened (like the discharge requirements) rather than what has.
Our experience was slow progress with pretty regular setbacks. Then all of the sudden, one day the doctor asks, "how'd you like to take them home in a few days?" and we were completely unprepared. She will come home, probably in the 37-40 week time frame, and really, nothing can hurry that. But the waiting is still torture, and being separated from her is torture, and so many things are not right about this situation...
We are here for you, whatever you need.
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