Prayer Requests

I have been asked by several family members to give an update on the ways to best pray for EG. So, I have narrowed them down to the top 4. The reason for 4 is because there are 4 requirements for her to get out of the hospital and oddly enough, they correspond quite well. :) She is not anywhere near close to coming home so don't think I am saying that...

1) She has to be able to regulate her own temperature. She is still in the incubator for this reason...to keep her environment stable.

2) She has to be able to breathe on her own. The vent she is currently on is called a CPAP and is nasal, so she is not intebated anymore but she is definitely still being assisted. She also has to stop forgetting to breathe.

Emily has a chronic lung disease called BPD. It is a result of her undeveloped lungs being placed on a ventilator (and the necessary oxygen) for such a long time. Her lung tissue has formed incorrectly and is scarred. The drs can see this on her chest x-rays and she will have this damage and scarring for the rest of her life. HOWEVER, her lungs will continue to develop for the next 5 years and no one knows if the new tissue will grow in healthy or damaged. The extent to which this affects her can vary from needing inhalers (and monthly shots during flu season)to needing oxygen assistance for the rest of her life.

We can't yet predict what kind of kid she will be and there are a lot of factors that will determine that (like how often she gets sick in the next few years, how well she functions using less of her lungs than everyone else, and how soon she can begin breathing on her own). As the dr said, "She's not going to be an olympic marathoner, but the rest we just don't know yet". It is a "wait and see", imagine that!

3) She has to be able to nipple all her feedings. That means she has to learn how to suck. The best description I have heard yet is a comparison to someone who has had a stroke. We have to teach them to swallow and eat and do everything all over again. The brain of a baby born this early hasn't had the chance to develop that far and so developmentally, we have to teach them everything...including how to suck, swallow, and breathe. Then, she has to be able to eat everything she needs without throwing it up...reflux is a big problem with these babies. This is likely to be the last thing that comes together for her.

4) Her heart has to stop stopping. She doesn't do this real often anymore but apparently it can come and go as they learn to eat.

In other news, we will find out about her eyes this week...she has her third eye exam to determine if she needs laser surgery. Oh yeah, those aren't developed either (there is a reason they are supposed to stay in there for so long...there is a lot to develop). If you want to look this one up, it is called ROP and the damage to the eye can range from needing glasses to complete retinal detachment (blindness).

Now, if any of you are feeling overwhelmed, it is okay...I have had two months to absorb all this. And as I told my Bible study ladies today, I have to choose to live ONE DAY at a time or it just gets too big. So, TODAY, Emily is still doing really well. She is 3 pounds 10 ounces and is eating 20cc (2/3 ounce) of milk every three hours. She isn't desatting as much and her blood gases are looking good (she is breathing well).

Last but not least, after I spend time thinking about her future, I have to remind myself and all of you about the statement that always comes to my mind, "BUT...and this is ONE BIG BUT, we still have the x-factor. He is my x-factor and He is our x-factor and He is most definitely EG's. He is bigger than all this and everything that is said about my little girl has to be taken with a grain of salt because ultimately, whatever is going to happen and whatever comes of this, it has to pass across God's desk first. He has to approve it and at any moment, He can decide to heal and reverse anything He wants. So, the above is what is true in our world, but don't forget whose got our back. And just in case He wants to change any of this, remember, it is not set in stone. Let's know this, let's pray against it, and let's wait and watch what he is going to do."

Thank you for your prayers! And keep me in mind too as I head back in to get a second opinion on my health on monday (I am feeling good, just still having issues related to the surgery).