Greetings from the NICU. The girls are 5 weeks old today. Overall, our peanuts have been doing pretty well, but with each little victory, comes another challenge. But progress is progress and we’ll take it any way we can get it. It’s one day closer to going home.
Friday brought more surgery for Brenna. She had a reservoir inserted under the skin on her scalp to help make draining the fluid in her head easier for the neurosurgeon. Now instead of having to go through the brain, he is able to insert the needle through the skin to withdraw the excess fluid. Previously, all procedures had been done right in the NICU, but this time Brenna had to go on a little ride to the operating room. As scary as it was to watch our little trooper get wheeled into surgery, the operating room is a much more controlled, sterile environment and the very best option for this procedure. Brenna handled it all very well. She is still puffy from surgery, but we are continually amazed at how tough she is. She has been poked and prodded more than any little girl should require, but at this point she seems to say, “Bring it on, I can handle it” when it’s time for another needle stick. In fact, she handles it better than Mommy and Daddy do.
Many firsts took place this week. For the girls one month birthday, the evening nurses decided it was time for another photo shoot. We came the next morning to find our girls in clothes for the first time. It really puts it into perspective how little they are when you see them swimming in preemie clothes. But the fact they are well enough to be able to wear clothes now absolutely melts our hearts. It does however mean we are closer to starting our cycle of never-ending laundry. We can’t have our babies in loaner hospital clothes, so we immediately pulled all of the tags off our preemie clothes at home and got them washed and to the hospital. We may be a bit biased, but they are now the best dressed babies in the NICU.
The girls have been steadily increasing their feedings, with Brenna being the exception due to surgery, but she is slowly getting back into the swing of things. As we are learning, increased input does equal increased output. The girls are now out of the micro-preemie diapers and into modified preemie diapers. Like the onesies, you can really see how tiny our girls are as the preemie diapers are massive on them. But with some scissors and a little medical tape, we learned to fashion some in-betweens that work just fine for now. As of last night, all three girls have passed the 2lb mark, with Lucy and Brenna leading the way at 2lbs 2oz, and Anna right at 2lbs. It’s hard to believe how much of a difference 8-10oz can make on a little one; they look like they are starting to fill out a bit.
The weekly head ultrasounds continue, and we finally got a little good news. There has been no significant increase in any of the swelling on any of the girls, and Anna’s swelling is actually starting to decrease. There was concern she may have required tapping to drain like Brenna. With the decrease in swelling, the neurosurgeon is optimistic she may be able to avoid it all together. So far, there has been no reason to believe Lucy will require any medical intervention for swelling, as her soft spot has not felt full at all, according to the doctors.
Now for the best news we got this week: all three girls have had their breathing tubes removed. They are all on Vapotherm, which is a high-flow oxygen system, which only requires nose prongs. In a strange role reversal, Lucy was the first girl to try this machine out. Normally she waits for her sisters to try something first, then decides if it’s ok. She was extubated Friday about the same time Brenna was headed down for surgery, so we didn’t really get to celebrate this milestone like we had hoped. Anna followed on Sunday, and Brenna on Monday. Moving to this machine is a huge step for all of them. Any time they can have off assisted breathing is time for their lungs to develop and get stronger. Hopefully, we won’t be going back to the vents anytime soon. With all the tubes out, we get to see their faces, hear their first little cries, and really start to get to know their unique facial expressions and quirks. This may be the last time we say this, but hearing them cry for the first time was a feeling we can’t put into words, just phenomenal.
5 weeks in and we are still kicking. As stated before, progress is progress; no matter how little it may be at the time. There has been a lot of “one step forward, two steps back”, but our girls are getting those steps back, and that is all we can ask God for. We appreciate all the prayers, meals, gifts and help you all have provided. Just knowing how many of you are willing to take time out of your schedules to help out makes it possible for us to focus on our girls. We can’t wait until you can meet them. They are special girls. Thank you. God bless.
In His name,
Brad, Angie, Anna, Brenna and Lucy Kamps
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