Day 37...

Day 37....

Hello! My cousin Amy and I were talking yesterday about this exact scenario that happened with Olivia. The frustrating thing about the NICU and the roller coaster of emotions is not knowing for sure what is going on. Here is the scenario...Olivia was showing many symptoms for NEC. So they started treating her for it even though they are not 100% sure (which is good because you don't want to be behind - you want to be on top of it). So knowing NEC and how severe it is - a few facts - 25% of all babies that get it die from it. We came close to it with Alyssa. It can go bad fast. My sister's coworker lost their child to NEC. The nurses said the baby was acting fine and four hours later, the baby died. My sister's next door neighbor, whom I've gotten to know, lost her daughter to NEC. So it is a bad deal. When we found out they were treating Olivia for it, I freaked a little inside. You start feeling a little better convincing yourself that they are on top of it and got it early - which is true and good. Well, today they did an x-ray and her intestines are worse - more inflamed and dialated. However, there were no air pockets in the wall of the intestines which would indicate that she does not have NEC. Good news - up in the roller coaster and you breathe a little. But...there is still something wrong and we're back to searching for an answer (I feel like we are on "House"). So then they tell you that they are going to test her for miningitis - and on down the roller coaster. Miningitis is just as bad in different ways. Again, if caught early then they can resolve it with antibiotics. With this, the recovering time is twice as long. She would be on antibiotics for at least 2-3 weeks. If her test comes back negative, we go back to square one and look at our other options. It's not that the NICU is doing anything wrong - cause they are not - It's just how it works. In some cases, they can't figure it out. That's even more frustrating. Just sharing a little of the ups and downs within the process.

Olivia - they are drawing spinal fluid from her back this afternoon. I should know soon the initial outlook. If the fluid is clear, it is probably not miningitis and we go back to the drawing board. If it is cloudy, then it might be. Either way, we won't know the final results until tomorrow . They are putting in a Pickline today. She is just so sweet and wants to be touched. She is comforted by having our hands on her and holding her hand and just feeling the warmth. I came in today and she was crying. I picked up her pacifier and gave it to her and she immediately grabbed my hand and I just put my hands on her and she settled right down. They went up on her oxygen to 3 liters to give her some help.

Emma - Emma is doing well. While I was pregnant, Emma was very stressed - especially at the end. That is why I had to have her early. When she was stressed inside, her pulmanary valve started to restrict (Pulmanary Hypertension). This clamping down is not allowing the oxygen to get to her lungs like it should. They have been treating her with Nitric Oxide and it has been helping. The Nitric Oxide dialates her pulmanary valve - opening it up and allowing oxygen to flow through to her lungs. Since they have been giving her that, she is doing much better. So the Dr. thinks that that is the reason for her lungs collapsing and being poor - not the infections. She is doing better and they are conservatively weaning her down on the jet and vent and nitric oxide. They have decided to do this by watching her visually instead of just reading the gases and tests. This way they don't drop her too fast. They also are giving her a tiny bit of sedation (not the kind that stops your gut from working). This will help her relax and heal a little bit more. She tends to get all fiesty and fights the jet. The jet is trying to help her breathe and sometimes she won't let it. Imagine that Sweet Emma. : ) She is still under mask, glove and gown. She has to test negative twice for the infection to come out of that restriction. Each test takes 3 days. So we are talking 6 days of waiting once she is done with her infections. She is starting to like some handling...like being patted on the bottom.

I love those girls!!!

I don't know what is worse - Not holding a baby at all or being able to hold one and then have to stop.

I'll write as soon as I know the results of Olivia's test.