Stuff happening these days

Strangely, days go by really fast around here. I suppose that is true anytime you are on a pretty tight schedule - even though the schedule often entails sitting and waiting until the next feeding or next time for meds.

I got down a couple days ago because of the lack of any progress. The first two weeks of Caroline's life were full of forward progress. One constant was that she would beat the odds. If they told us something would happen in two weeks, it would actually happen in one. If they told us something would happen early next week, it would happen before the end of the current week. The surgeon said she would regress before she got better after her surgery but we never saw anything but forward progress. This continued through her move back to the NICU. She got extubated earlier than we thought and were able to start feeding her earlier than we thought.

Lately though, it has seemed like we are stuck. She is hanging on to her oxygen support like Linus hangs on to his blanket. Here's an example:

This is how her canula was for about an hour earlier this week . . .

Her sats stayed at 100% for the entire time. Seems like a good time to try her without it right? We take it off and she immediately drops down into the 80's. The doctors don't want her below 92% so back on it goes. Today, we decided to do another room air trial. When the nurse took her canula off, she decided not to take it completely off but to turn the pressure off - the canula was down around her neck. Again, her sats dropped into the 80s. As the nurse started putting her canula on, I noticed that her sats started increasing immediately but the nurse hadn't turned the oxygen back on. Her oxygen saturation got back up to 100% with the canula on but the oxygen off. WHAT? We noticed that while she turned the pressure to ZERO, there were some tiny bubbles in the . . . thing (I don't know what it is called - whatever the thing is that sends the oxygen through the canula). So now, instead of giving her 1/16 of a liter of support, they are giving her 1/32 of a liter of support and her sats are staying at 98-100%. So frustrating but she is making it very clear that she still needs that support. It seems to me though that she just likes having the tubes on her face! Jesse thinks it must have something to do with her heart and not her lungs. We'll talk to her doctors about that possibility. What that would tell us is that she will need the oxygen support until she has her heart surgery.

Her feedings started to seem like they were regressing as well but she has done so much better the past two days. She took 4 full bottles yesterday. That is the best she has done.

We decided to give her another chance to maintain her temperature by herself today and she did really well. This became a pretty big issue for us. While she could go home on oxygen support and with a feeding tube, they would not let us take her home if she wasn't able to maintain her temperature. BIG blessing that she did better with her temp today.

They are clearly prepping us to take her home. Today, they had me give her a bath . . .

She LOVED it. I clearly have a water baby on my hands. This was her first time to be IN the water.

They also had me give her some of her medicine for the first time and feed her through the feeding tube for the first time. Jesse, the boys and I (yes the boys too) are signed up to take a CPR class on Monday. Apparently this is something you have to do before you can take them home.

I also got a list of her million specialists that need follow-up appointments scheduled before we can go home. This is on my To Do list for tomorrow.

So, please keep praying for us. It really is starting to seem like our homecoming is right around the corner.

As I said earlier, a couple days ago I got down about our situation. The boys could tell I was sad and asked why. I told them that I was sad because I wanted to take Caroline to our house. James patted my stomach and said, "But Caroline's house is in your tummy!" Not sure if this should make me happy because it is such a sweet, innocent thing to say or sad because I still look like I am carrying a full term baby! In all seriousness, when I was very down, I was reminded by a GREAT friend about God's timing. She reminded me of how important it is to know that God has it all worked out and we just need to have faith. Faith that He has plans for us. I decided to start reading through the gospels again praying that I would find hope in our situation and this verse immediately jump out at me.

"But seek first his kingdom and his righteousness, and all these things will be given to you as well. Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own." Matthew 6:33-34

I am so stubborn (I know, brand new information!). I have a tendancy to get lost in what I want and have a need for things to work out exactly as I envision. When things don't go exactly as I want them to, I tend to get frustrated . . . mad . . . irrational. Just imagine me sitting with Caroline in her NICU room saying, "Caroline, wake-up and take your bottle. Please, Caroline!" Why doesn't she do what I ask her to do? God's timing, Sarah, remember it is in God's hands! I constantly need to be reminded of how far she has come in her BIG life so far.

A few prayer requests:

Please pray for us to focus on Today. Jesse is much better at this than me so feel free to focus the majority of that prayer on me :). Please continue to pray that Caroline will do well maintaining her temperature. Please pray that she will no longer need her 1/32 of a liter on oxygen (still infuriating to think about - how could that little make a difference?). Please pray that she will continue to do well on her feedings. Please pray that she will no longer have the episodes of SVT (fast heart rate). Please pray that we will be able to go home soon . . . I am scheduled to go back to work in about 10 days!


"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11