I take back what I said about wondering if Alicia is my daughter. She totally is my daughter and she looks more and more like me every day. This morning when we went to see her, I couldn't help but think that she looks a lot like me when I was a baby. Makes me want to go and get some of my baby pictures and compare. =) Whoever she looks like, she really is an adorable little girl. I love it when she opens her eyes and peaks out at us from inside her incubator.
Over the past few days, God has been reminding me to look for the silver linings. And the more I look for them, the more I see them everywhere!
Alicia's doing really well. During last night's visit we got the great news that her scalp IV has been removed! Yay! The scalp IV is the little antennae-like thing sticking out of her head that you may have seen in some of her pictures. Silver lining - the fact that they've removed it means that her condition is stabilizing, and they feel that they probably won't have need of it in the future. Of course, if her condition changes and there is need of it again, they will probably insert it again. But as of now, we rejoice that it's out! =)
Last night, Linda and I also signed off on some new medication that the doctors want to give to Alicia. Now we're not 100% sure, but based on what we read in our preemie book, here's what we think they're giving her. Here's our new word for the day, 10 points if you can pronounce it, because I can't. =) Erythropoietin or epo for short is a hormone that stimulates the production of red blood cells. (Why do medical terms all have to be so hard to pronounce? It would be so much easier if it was called Big Red or something. haha) Anyway, this is a hormone that we all have, but for small preemies because of various factors their levels of erythropoietin are lower than in term babies. This results in anemia or low red blood cell count. When kids have anemia, they don't have enough red blood cells or more specifically hemoglobin to carry oxygen to the organs and tissues. Doctors can treat anemia in two ways, one way is through blood transfusions and the other way is through this new medicine.
As I said earlier, this hormone stimulates the production of red blood cells so the hope is that with it, Alicia won't need as many blood transfusions in the future. So far there are no known serious risks or side effects, but it's a relatively new medication so no one is sure how babies who get it end up doing in adulthood. We pray for God's covering.
Silver lining - the fact that their giving her this medicine is a sign of improvement. Production of red blood cells requires iron, so preemies who go on epos also need to take iron supplements. Iron can upset the stomach, and may make feeding problems worse, so babies aren't usually started on epo until they are stable and eating well. Alicia's been eating well consistently and she's also been taking iron for a couple of days now and hasn't had any problems, all positive signs.
Speaking of eating, Alicia's been taking in 9cc per feeding and she's been digesting very well. Doctors say that for a child her size 9cc is a good amount. So for now they'll keep her on that until she gets a bit bigger. She's also gained weight today. She's up to 618 grams. Doctors hope she can gain 10 - 20 grams a day at this point, so she's doing pretty well.
At the hospital today, Linda had a conversation with one of the other mom's at the NICU. Her baby is a couple of weeks older than Alicia and weighs about 1000 grams, but he's only eating about 11 cc per feeding. He's had a lot more surgeries than Alicia in his time at the NICU and he's had some problems digesting, which made me think that we need to be really thankful that Alicia has had good digestion from the beginning and that she hasn't had any problems. There's another baby that has been eating for a couple of weeks and he's still only on .60 cc per feeding. I think in circumstances like this it's so easy to focus on the negative and to constantly be filled with anxiety or worry over the "problems" and then to dismiss anything good as something that's just "expected".
But what I'm realizing is that when things are going well, that's a huge silver lining. And when there are no problems and things aren't going badly, that's also a silver lining. You might think, "things going well" and "things not going badly" what's the difference. There's a huge difference.
Sometimes she's not improving, but she's stable. That's huge!
One thing that I've been over looking as a blessing is the fact that Alicia is eating well. That's a HUGE blessing. Not every child eats well. This is something to rejoice over. The fact that Alicia recovered pretty quickly from her PDA litigation and pneumothorax, again, Praise the Lord! And as I flip through the preemie book, I'm realizing there are a host of problems that we haven't faced and probably won't need to face, again, thank you Daddy! Alicia's situation could easily be worse than it is now, and the fact that it isn't isn't something to take for granted, it's something to rejoice over!
Also, something else to give praise for, Linda's been working really hard to provide milk for Alicia, and thankfully, her milk has been coming in very consistently. Again something that I originally took for granted until I realized, not every mom has enough milk for her kid. In fact, there's a whole section in the book about milk supply that as of now we can skip over, because it's not been a problem.
So what I'm realizing is that while we're walking through this journey, I can focus on the problems and focus on the bumps in the road, or I can focus on the blessings, not only the successes, but also the problems that we don't have to face.
There are so many things that we can take for granted. But I think to survive and to thrive we need to learn to be thankful for even the small things. We need to be thankful that we're still alive each day, that Alicia is still alive. Each day she's alive is another day that she can grow stronger and thrive, and these days, they're not promised to us, and they're guaranteed. So we give thanks.
Another thing to be thankful for? God's wisdom. Today, again we were told about her mucus situation. And I started to worry, but then I thought, what if . . . what if, there is a purpose for all the extra mucus in her lungs right now? I'm no doctor, so I'm not 100% clear on the purpose of mucus in our body, but isn't it there to catch bad things and keep it from getting into our body? So yes, I know that right now mucus is making it hard for her to breathe. But what if all that extra mucus is preventing something else from getting into her body, something more deadly? I honestly, don't know, but what if? Made me think. So often we get mad, frustrated or disappointed with God because he doesn't answer our prayers in our time or in our way. But what if, him not answering the way we want is a greater blessing than him giving us what we want? What if, by doing exactly as we requested, it created a bigger problem? Isn't it a law of physics that every action causes a reaction? So what if by removing one problem, it creates a greater problem?
Reading this, one reaction might be paralysis. Because, well, we don't want to pray for the wrong thing right? What if what we pray for ends up creating a bigger problem? Well, thankfully we have a wise, sovereign and loving God. One who listens to us, but knows the bigger picture and knows the consequences of each action. The question is are we willing to trust him and go with him, following his direction and accepting his guidance? Or do we want to just go at it on our own, because we don't like the way he's doing things. Because if we do choose to go our own way, and we insist on doing things our way, then he'll let us. He's a gentleman and not going to force himself on us. But for me? I'm going to believe the promises of the Bible that the Lord blesses those who trust in him. And he will prosper, and direct the paths of those who walk with him and follow in his ways. Of course, because his ways are higher than our ways and his thoughts are not our thoughts, we are not going to understand everything that he does. In fact, sometimes I think he's down right crazy. But when it comes down to it, I think God has a bit more knowledge about the intricacies of my daughter's life and body than I do, so maybe I should just leave the job of healing to him.
Of course, this doesn't mean that we don't pray. This is the amazing thing about our mighty God. He's all-knowing and all-powerful. He doesn't need us. Yet he chooses to humble himself and he invites us to partner with him. He invites us to be in conversation with him and dialog with him about everything. He doesn't need to ask our permission for anything. He's God! Yet he allows us to work with him and partner with him through prayer to accomplish things here on Earth. It's amazing.
But when we pray, we must never presume to know better than God. Ever work with someone and maybe because you have more experience you know that a decision that they're making or something that they're doing may end up causing more damage than good? You try to tell them and suggest other ways, but the person insists? Well, I think sometimes that's how it is with God and us. He knows best, but we insist on doing it our way, and then end up making a mess of things. The funny thing is, then some of us turn around and blame God for the consequences of our choices. Well, thankfully, God's mercy is new every morning and his grace is more than enough to cover for our mistakes.
So we keep walking ahead, friends. We thank God for the progress - the things that go well and the things that aren't going wrong. We ask him to give us the strength to get over the humps in the road. And we trust him that when it seems like he's not answering our prayers the way we want to, that he's got some greater plan and purpose in mind.
So it looks like our clouds are quite silver-lined. And you know what? Sometimes clouds bring rain. And with rain comes water. And water gives life to the earth. So how's that for silver lining? =)
1. Next Wednesday, June 29, Alicia will be one month old! Praise the Lord! Time really flies. Sometime next week, I believe Tuesday, Alicia will get an eye exam. Standard procedure for preemies. They'll be checking for a condition called "retinopathy of prematurity" or ROP for short. In this condition blood vessels in the eye don't grow the way they should and can cause vision problems. Ninety percent of preemies of Alicia's size and age get some form of ROP, but we pray that Alicia would defy the odds. The good news is that most cases of ROP are mild and usually go away on their own over time, so it's not something to be too worried about. Pray that Alicia's eyes will be perfect and that she'll have perfect vision and not need any kind of corrective therapy.
2. Continue to pray for Alicia's breathing. She's doing better and better although she still has bouts of apnea. Right now her ventilator settings aren't super high which is a good thing. She's usually at about 40% oxygen saturation, except after she eats. For some reason after she eats she needs a bit more oxygen. I think it has something to do with the blood rushing to her stomach to help her digest verses actually getting circulated around the body. Anyway, the doctor said that over the next couple of weeks, they're going to try to wean her off the ventilator more and more and see how she does. We pray that she can be off the ventilator and the ventilator tube can be removed.
3. Pray that Alicia will continue to eat well and pack on the weight. She's been growing well these past few days, and we pray for more growth! More, Lord, more! =)
4. Pray for her other senses as well. So far, we think she doesn't have any hearing problems, since she does seem to respond to our singing and talking. Also, her sense of touch seems to be OK. No idea about her taste and smell, but yeah always good to pray for. Pray that everything would develop in a healthy way and that they would be protected from any potential damage.
5. Pray for her brain development. We asked the doctor today about any potential brain damage, and she said today that there does seem to be some brain damage based on the last scan they did, but she's not really sure about the extent or severity of the damage. Also, just because there is damage in the brain, it's hard to tell just how this will effect the baby. Our brains are such intricate things. As we know different parts of the brain control different things, so it's hard to know just how the brain damage, if there is any, will affect her. Sometimes kids have brain damage, but they develop completely normally and the brain damage doesn't affect them at all. We just pray for completeness in her brain, that there is no damage whatsoever.
6. Pray for finances. Thankfully, insurance will cover her stay at the NICU and the incubator usage. But there are several self-pay medications like the PDA medication used early on, and also this new epo that they'll be giving her. Plus we've got our regular living expenses to think about. We're not worried. We know the Lord will provide, but always good to pray. =)
7. Pray for divine relationships. We've been sensing that as members of the NICU, we have joined an exclusive club. Granted, I doubt that anyone would ever choose to join this club, but we're in none the less. So as members of this unique club, I feel like we have a unique opportunity to connect with and bless other families in similar situations. So we pray that God would show us who to connect with and how we should connect with them.