Tonight Nikkie and I went to check on our little girl and the news wasn’t good. She’s actually gone in reverse and gotten a bit worse. As you may know she’s been having some episodes of apnea and bradycardia due to issues breathing. She was put on oxygen yesterday to help her get going with that. Today they had to increase that supply a bit because it’s gotten worse. This afternoon I noticed a big red area on her left shoulder blade and was confused as to what it may be. It was looked at by some nurses and doctors and they decided to run some labs just to be sure it wasn’t something bad. It turns out it may be just that…something bad.

The results of the initial labs came back fairly good with one exception. The CRP results came back a bit high which indicate there could be an infection problem. CRP, to my understanding, is C-reactive Protein which rises with the inflammation of some part of the body. It doesn’t specify where an issue may be but it typically shows if some type of issue is present. Brady is on some antibiotics now and will get more in about 5 hours. One of the doctors expects her to start getting better quickly after the second dose of antibiotics. They are also running some additional test to try and hunt down the issue at hand. We’re unsure of the cause at this time.

She also received a blood transfusion today. This was her first one since she’s been born and as far as I know it’s pretty good for a preemie to go 6 weeks without one. Her hematocrit level was low which means she will have a harder time breathing overall (hematocrit is the red blood cell count). The transfusion brought the count from 27 (too low) up to 36 which was a good result.

Perspective

So far we’ve been quite blessed to have an incredibly healthy baby girl. We’ve been fully aware of the plethora of issues she could be having and yet was not. Knowing those things, however, cannot prepare a parent to see their child turn blue and stop breathing multiple times. I couldn’t help but to start thinking of an age-old song I, and many others, learned growing up. 

Jesus loves me this I know

For the Bible tells me so

Little ones to Him belong

They are weak but He is strong

For those who may not be familiar with those lyrics they are from what I know as “Jesus Loves Me” and it’s a short and simple tune that hits the core of our faith. Obviously the first thing I think about it “little ones” and how little my little girl is right now. Certainly she is weak right now but she has a Heavenly Father who is stronger than any other. Soon after that thought I came to another equally powerful one. We are little, Nikkie and I, and He is most definitely our source of strength in this time. As Nikkie said in a blog the other day, I can’t imagine what it would be like to go through this experience without the love and strength of our Daddy up above. 

Some additional lyrics came to mind this evening as well. They’re from a worship song that I hear pretty often and the verse is a simple sentence.

Strength will rise as we wait upon the Lord

We will wait upon the Lord

We will wait upon the Lord

 This entire experience, that which we have experienced thus far, has really taught us what waiting really is. I also wonder what the true strength will look and feel like. It reminds me of Psalm 119: 28.

My soul is weary with sorrow; 
    strengthen me according to your word.

The strength we get may not feel like the strength we expect. It is our prayer that He does strengthen us according to His Word. We also pray he strengthens others going through this type of experience currently. We pray daily for the rest of the families in the Memorial NICN. We also lift up the nurses and doctors regularly. Having Brady take a few steps backwards has done nothing but increased this prayer.

Please keep her lifted up as we go through the next few days. Hopefully this will only last that long but truly there is no telling. We will most certainly keep you updated as things progress.