A down day
Yesterday I tried to feed Alicia three times. And she's not at all ready for that yet. She's been having more spells both when I'm feeding her and when I'm not. It makes me so sad. I was so energized for maybe a week, thinking that things were getting better. But it just feels like we've really gotten nowhere.
Alicia's heart races now. The doctor thinks it's likely just the caffeine that she's on. Yeah, I suppose that would do it. The doctor did give her Prevacid for reflux. She thinks that it's reflux causing Alicia all these extra spells. It's very very common in preemies.
Alicia's "doctor," by the way, is a neonatal nurse practitioner. I love it. No more rotating doctors. We have Kathy every day Monday-Friday, week after week. So she knows Alicia. She knows her habits. She can notice a change. I really like being assigned to her.
But I really wish Alicia was doing better. Really, my friends. We aren't all that close to the end. I believe the Paris boys came home at 37 weeks, born at 34.5. The Gunderman twins were born at 29 weeks and home at 35. Titus Anderson was born at 32 weeks (but he acted like a 34 weeker) and was home in three weeks. But all these babies were born later than Alicia. The earlier a babe is born, the longer they spend in the hospital. None of those babes was ever on a ventilator. The Gundertwins did come home with caffeine and a monitor, one on each. It just seems to me that lots of people are thinking of these babes when they think that we're almost done. I introduced Alicia to the breast four weeks ago and she still doesn't take more than three sucks in a row. She's 36 weeks now, but she's just not there yet.
This is long.
So very long.
Alicia was due on March 4, Toby's birthday. They say that most babies go home within two weeks of their due date. Now don't go telling me that means that she could come home in two weeks unless you're also willing to say that it could be six.
My other major stresser and sadness is my church. We've had an issue that we've been trying to work on for two years now and nothing has changed. It came up yet again and we actually came to the point where today we said, "Okay, we're no longer members of this church." And then, something changed just slightly. So we're still there. And it's still sad for me. It doesn't feel any better. It feels like trying to convince someone to be your friend. Or needing to go to court to keep a job.
We won't be at church much in the next few months anyway. We need to keep the Tobes away from groups of kids (germs) and once Alicia is home, she can't go for a while either. So I really shouldn't bother thinking too much about church for a while anyway.
And I'll step back from trying to feed Alicia so much for a few days. Today I only tried twice. Tomorrow I might even try only once. Josh's parents will be in town for ten hours tomorrow. They planned a layover here on their way to see Brad and Stacy Fuller in Uganda. Josh and I will make a renewed effort to get out of the house more while we can.
I guess I'm trying to dive into the good things in life. I feel wonderfully close to my husband. And Toby is a riot. He'll say his full name now. "Bias Erness Foower" (Tobias Ernest Fuller). He'll talk about things he remembers. The other day he was missing Claire and Grandpa Ernie. "Care house? Papa Oney?" Toby is good for me. I try to laugh as hard as he does.
Thank you my friends. Thank you for remembering us. Thank you for being there for us.


6 Comments:
I love you Michelle. ( I cry with you from here. I know it's not the same, but I do it anyway.)
Our love to Toby and Alicia too.
Right, Oliver and Wesley were born at 34.5 weeks and came home 19 days later. Doctors told us to expect about a 10 day stay, b/c they were born so big. Every day past the 10-day mark was frustrating - why can't you just suck and swallow, and stay warm? Is it really so hard? Lucky for us, that tension lasted only 9 days, but I remember it as a long 9 days. And I realize that micropreemie issues are very different and more extensive than late preemies.
I'm sorry about the church stuff. I encourage you to go with what you said about giving yourself grace. You won't be at the porch, or any other church for that matter, regularly for a long time. Do whatever you need to do to receive love and grace and help, and to stay in the friendships you want to stay in, and deal with everything else later. (And if ignoring my messages is helpful, then just ignore them!)
We a glad to hear that there is progress with Alicia. Sorry you guys won't be a church. But we will continue to keep you in our prayers. Let us know if there is any way we can help.
Thanks everyone. You make us feel so loved. Just knowing that so many people are thinking and praying for us makes me feel so much better. I'd feel like a rock star if I wasn't so focused on other things.
Alicia Gayle has just taught me how to Post a Comment - (I'm technologically challenged) - so altho' I've been following your story from the beginning I'm just getting to say some of the things I've been itching to. Thank you so much for making it possible for us to share your miraculous journey - you are an awesome family - it has been a blessing to walk a little way with you and I'd like to think that one day we might meet you all. In the meantime, this blog thing is pretty incredible.
I pray for peace and rest for you all in the midst of all this. I know each baby is different, and each situation is different, but I at least know what it's like to have a micropreemie. Born at 24 weeks, Samuel didn't come home till a week after his due date. I remember he still was having trouble with eating and bradycardia, and with hypoglycemia right up until a week or so before he came home. Those days were, in some ways, harder than the first few weeks where we weren't sure if Sam would live or not. Those were still the hardest days, but I think I was somehow in a fog in the beginning. Later on, you start to think everything is going to be okay, then something happens, whether its big or small, and all that hope you've built up is lost.
It's really really hard. I had many days of heartbreak, long after the crisis of whether or not he would live was over.
Just wanted to let you know you're not alone and that we are thinking of you daily. THanks so much for sharing your thoughts and struggles.
Peace,
Kirsten, Robert, and Samuel
Post a Comment
<< Home