Update #2

Friday, February 21, 2014

First, thank you for all the comments and words of encouragement. They have been the source of hope these past two days. And with that, let me apologize for not getting this out sooner. Didn't realize the energy that would be gone and the many interruptions we have daily between doctors, tests and just monitoring her.

Once I was moved out of recovery on Thursday, they did take me on the stretcher to the NICU to see Everly. Jimmy was already there and had been with her since leaving the delivery room. During that time, he was texting me pictures of her and giving me some basic info on how she was doing. Unfortunately, I wasn't able to stay with her more than a few minutes, just long enough to kiss her and see with the cpap on and a tube in her mouth. Then I was taken to my room. According to Jimmy, her vitals were checked hourly, they took an x-ray, an EKG and an echo of her heart. My mom was also in the room with Jimmy and was present when the cardiologist updated them on his findings. It was then that they were told of another heart defect that was found...Bicuspid Aortic Valve. In a nutshell, it means that this valve that distributes oxygen-rich blood to the body has two flaps instead of three. Following the cardiologist visit, the neonatologist visited and instructed the nurses that they could remove her cpap machine. Later in the evening, the boys and my dad arrived and we all went to the NICU together and joined Jimmy and my mom. Jimmy was able to sponge bath her later that night after I had returned to my room and my parents/boys left. Much later, Jimmy was the first lucky one to hold sweet Everly in the quiet of the night. He texted me a photo to my room and I was so glad that one of us was able to hold her the first day.

On Friday, it was the routine of vitals, echos, EKG and few blood draws. The excitement for me was that after breakfast, I was allowed to offer her kangaroo care which is skin to skin contact. That was so comforting for both of us.

Unfortunately, the IV she received at birth started to leak and they had to replace it. It took 3 pokes to get the new one. But, five hours later, that one leaked and they needed to find a new IV site...3 more pokes. I received another opportunity to do kangaroo care with her. It was then that our nurse noticed that this new IV was leaking. It was then discussed with us the idea of starting a PICC line instead. The benefit to this is that it lasts longer than a regular IV. The downside is that it is a central line straight to her heart and comes with its own risks. Unlike the IV line, this one requires parental consent. Seeing that she had already lost so may vein up to this point, we both agreed it was necessary since we are looking at a bit of a stay in NICU.

So, at 10:45, we left NICU for my room while they prepped the room and Everly for the procedure. After a couple of hours we still had not heard anything, so we called up to the room to find out that they were not successful in starting the PICC line. One thing about that is because she had already lost her IV earlier in the day, they were unable to give her the customary sedation medication used during the procedure. After much discussion, they decided to try to do another regular IV line and tried almost every other vein...arms, legs, wrists and even twice on the scalp. Still no success after two more hours. Then it was decided to try to go in through the drying umbilical cord which is usually done right after birth. However, it was very dry so they weren't sure they could do it. After another long three hours, it worked. She was in need of fluids at this point since she had bee IV free for about 8+ hours now. Shortly after they decided to try another PICC line under her arm because the umbilical cord line wouldn't last for too long. So another hour and a half of work and the PICC line was inserted. She is a tough cookie and really had a lot to endure during this time.

Fast forward past two more days (Saturday and Sunday) and we are here today just waiting for answers. Her medical episodes aren't following along with what the doctors would expect based on her gestational age and her heart condition. So, we are in a wait and see pattern until the tests come back and then the doctors can make decisions based on that.

Last night (Sunday), was challenging because she had many episodes of her breathing stopped but she wasn't able to recover on her own. So, the respiratory therapist was essentially planted in the room for the night. It was a night of worry and no sleep to say that the least.

Garren will be taking over updates and posting for us as things come up. Thanks for checking back.

Crystal & Jimmy

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