How Quickly Things Can Change...

We have been told from the very beginning that our NICU journey would be a roller coaster ride full of ups and downs.  Fortunately, we have not had too many dips and we were thinking both babies, especially Cooper, were closer and closer to being able to come home.  Last week, Dr. Mandy even told us the tentative plan for Cooper would be to come home this Friday.  Even though she is doing much better, we have always known Kinley would be here a little longer, but we were really just waiting for her to grow.  After last night and today, it looks like both babies will be here a little longer than we thought.

Last night, at about 9:30, Brian called our night nurse, Tina to check on the babies.  If you've read my earliest blogs, you may remember me talking about how Tina is our favorite night nurse.  As soon as she answered, Brian could tell she was not her normal cheerful self.  She told us that when she came onto her shift at 7:00, she could immediately tell Cooper was not himself.  He had not finished his bottle at 6:00 (which is not like him), and was very lethargic, unresponsive, and pale.  She ended up having to re-insert his feeding tube, which had been removed earlier that morning because he had been doing so well on the bottles.  Over the next hour to hour and a half, he got progressively worse and started having many more A's and B's than normal.  He was also unable to regulate his own temperature.  At this age, babies don't really get fevers, but instead their temperature goes down.  His temperature was 96.8 when she checked, and then even after a double swaddle and extra blanket, only went to 96.9, so they moved him back from an open crib to the isolette.  She called the resident to come look and pushed to do a blood work-up, which they did.  His CBC showed a very low white blood cell count and anemia.  They gave him a blood transfusion at about 1:00 in the morning.  They also are growing blood and urine cultures to check for a bacterial infection as well as screening for some viral infections.  At about 7:30 this morning, they had to put him back on CPAP because he was having so many A's and B's and struggling to breathe.  At this point, we know he has something that is making him sick, we just don't know if it is bacterial or viral.  They started him on antibiotics as a precaution, which he will stay on at least until we have an idea of what is making him sick.  If it is viral (which is my main suspicion, then they just have to give him breathing support and let it run its course.  Of course, our other main concern with viruses is that they are contagious and we really don't want Kinley to catch anything because we suspect she would not be able to tolerate it as well as Cooper.  

Right now, Cooper is stable, but it is very apparent that he is not feeling well.  Hopefully, after a few days of rest he will be feeling better.  We are hoping that he remains stable on CPAP and does not have to be intubated.  We are incredibly grateful that Tina was here and knew him well enough to know something was wrong, and pushed hard for the doctor's to take his condition seriously.

Kinley is still growing, but Dr. Mandy also expressed some concerns about her today as well.  They were already scheduled to run some labs on her this morning, and when they did they showed that she was also anemic, so she got a blood transfusion today as well.  He also was concerned that her carbon dioxide levels in her blood were on the high side.  He is worried that we took her off of CPAP too soon and because of that, her lungs did not grow enough.  Basically, the positive pressure from the CPAP machine helps to open her lungs and increase the lung capacity.  So...even though she is doing ok, he is considering putting her back on CPAP so her lungs can grow more.  At this point, I have very mixed emotions about this because I know she hates the CPAP and she won't be able to bottle feed while on it, and she will probably have to stay on it 3-4 weeks.  On the other hand, I want them to do whatever is best for her in the long run.  It is very apparent that Dr. Mandy is conflicted as well and is not taking this decision lightly.  Right now, we are just praying that Dr. Mandy makes the "right" decision, whatever that may be.

Overall, it has been quite a long night and day for us and we are still amazed at how quickly things have changed.  Please pray for Cooper to get well, for Kinley to stay well, and for the team to make the best decision regarding Kinley's plan.  Thank you!