After living with myself for 31 plus years, I've started to notice a pattern with my personality.
I always start well, and in high spirits, but I also start to burn out rather quickly. God's definitely had to teach me a lot about endurance. Many people have told us that having a preemie in the ICU is a marathon experience, and not a sprint, and I'm realizing that more and more as the days pass.
Yesterday was a harder day for me. For the first few days of this ordeal, my spirits were up. I was filled with faith and just continued to rejoice in the Lord's provision and care. Starting yesterday, while I still have faith that the Lord is God, and the great physician, and our Jehovah Jireh, provider. Some doubts started to creep in.
"So she seems to be doing OK. So she's going to live. Then what? What kind of life will she live? What if she develops permanent disabilities? Brain damage? etc..."
I know that this is nothing more than whispers from the devil trying to get me down, but I'll be honest. I'm getting tired. Not physically, but mentally and emotionally. I just want all of this to be over. I want my little girl in my arms, safe and healthy. I want to hold her and talk to her. But I can't.
Right now, I get one hour a day with her, and if there are other family members and guests, then even less.
I struggle, because I want to learn all that I can so I can know about my daughter's condition and know how to take care of her. But reading statistics can be depressing. 50% of babies who are born at 25 weeks or earlier, blah, blah, blah. 25% blah blah blah. 10% blah. 5% blah! UGH!
These statistics mean NOTHING in the light of God's grace, mercy and love. In fact, He is the God of the impossible. The worse the statistics, the higher the the chance of seeing a miracle. So do it, Lord. Perform the miracle!
Our little girl, (And when I say our, I don't just mean, Linda and mine. I mean, God's, Linda and mine, and all of you guys too! She's just as much your little girl as she is ours. We know many of you love her so much, and are praying so fervently for her. Thank you!!) continues to remain stable. Which is a huge praise. Right now, the best thing of course is improvement. But second best, is stability. I've got my phone on, but definitely NEVER EVER want to receive a call from the hospital about Alicia. That can only be bad news.
Yesterday, towards the end of our ICU visit, a father of one of the other babies bid farewell to the nurse saying, "Thank you, for taking care of my baby. I hope I won't get a call from you." The nurse responded, "Yes! I don't want to call you, either!" Funny exchange. But so true. As I've said before, "No news is good news."
Alicia's ventilator is back up a bit. Last night, it went from 13 back to 20, and this morning it was up to 21 breaths a minute. But that's OK. She's growing and learning how to breathe. Right now, she's still got a bit of Apnea, which means she forgets to breathe. Very common in preemies. Her belly button is healing nicely now, and last night she was able to even rest a bit on her stomach, which is good, then she can maintain a nice head shape. (haha. Seems so frivolous to worry about head shape in a situation like this, but it's important!)
Because she was on her stomach yesterday, we were able to touch more of her. Her backside isn't as covered with tubes and monitors, so we could touch more of her skin. That was a very special gift.
By the way, can I just tell you that our Heavenly Father just continues to astound me with the details of his provision. He doesn't just give us what is good. He gives us what is best. And he cares about the details. We got to chat a bit with Alicia's daytime nurse today, who by the way has warmed up quite a bit since our earlier visits. Alicia's daytime nurse is currently pregnant and today we asked her when she was due and she said mid-September. And she's also having a girl. You'll remember originally Alicia was due in early September, so this means that gestational age-wise, the baby growing inside the nurse is about the same age as Alicia. I mean, thank you DADDY! I mean, really. This isn't just a coincidence. I really believe that God orchestrated it. I mean why, of all the nurses in the ICU, was a pregnant woman with a child about the same age as Alicia assigned to care for her. And we really like this nurse. She's fun. She'll actually talk to Alicia and kind of banter with her.
Today, when I held Alicia's hand, I felt again that she had a pretty strong grip, so I asked the nurse if Alicia was considered strong. She was like, "Definitely! She's really strong! In fact, she's got quite the personality. Sometimes when I'm working on her, she'll swipe me with her hand or kick me. And I'll have to say, 'Come on, little girl. Don't be like that.'" Haha. We had to have another talk with our daughter about behaving for the nurse. Also, Alicia knows how to enjoy life. Sometimes when the nurse gives her the cotton swab "lollipop" Alicia will actually cross her legs as if she were just laying back and enjoying a good suck." Silly girl. So playful. I love it.
Linda and I have also been singing to Alicia whenever we go to see her. We thought we were just having a tender family moment, and didn't realize that we actually had an audience. After one of our songs, a couple of the nurses were like, "You guys should record it and put it on an MP3 player. Then we can play it for Alicia in her incubator." Another one of the nurses were like, "Yeah. We can put a speaker in the incubator and then we can put on outside and then we can all enjoy it! It sounds great." That was sweet. So I guess the next project will be to record some "lullabies" and messages for Alicia to hear.
Actually, if any of you want to record something, and you can somehow get it to me on an MP3 format, then I'll do my best to put it onto an ipod or something and we can play it for Alicia.
We keep going. Onward and upward.
Thank you all for all of your messages of love and encouragement. Thank you for sharing stories of your own preemies, and stories of your friends or relatives preemies that are all doing well now. They are a huge source of hope and encouragement for us.
Right now, my spirit is hopeful, and at peace, but at the same time wary. I know there are going to be a hundred things that I need to think about, prepare, watch out for, think about and know about so that we can provide the best care for Alicia. But I have no idea, no idea what it will all entail, what information to look for, or even where to even start to look for information. But God has paved the way thus far, and I know he's not going to stop. So we just continue to live in the grace that is not only a part of Alicia's name, but a huge part of her life too.
In the meantime, PLEASE, PLEASE keep praying. Thanks, dear ones.
Love,
Campbell
DEFINITELY keep the prayers coming!! And know that your reaction is totally normal; especially for a situation as intensely stressful as having a micropreemie! That doesn't mean you don't have faith or anything; there's nothing wrong with processing all the information and statistics and anecdotes coming at you. We're designed to need time to process information, to wrap our minds around it. Just remember to keep taking every thought captive to obedience to Christ, so as you process through it, He is guiding your thoughts and your heart. And keep remembering, too, when you feel discouraged or burned out: his power is made perfect in weakness.
ReplyDeleteAnd I love her playfulness. :) That is adorable!
You guys recording stuff for her is an awesome idea; what a blessing it will be for her to be able to listen to the two voices she is most familiar with! Hey maybe you could even hook her up with some LTE MP3s. Those should be easy to come by. ;) LOVE YOU GUYS!!
Oh and if you get a chance, I really think joining Trish's preemie board could help. Great group of people on there and I think they could really help with whatever questions you're having, stuff you're wrestling with, etc., since they've all been there done that. Might be worth checking out at least.
ReplyDeleteWe are praying for you guys! Love, Ali and Sammie
ReplyDelete