A lot to be thankful for

Sorry to those dedicated bloggers that are frustrated with us for not posting an update last night. Brayden was here and we wanted to give him our undivided attention. Believe me we've already heard about it from several people.

So, about Ava's progress... She is doing well. Yesterday her heart rate was all over the place. Meaning that it would bounce from the 150 range to the 230 range within a matter of seconds. This was only moderately concerning to the cardiac staff. They knew that if it continued they could just put her on a rhythmic medication to regulate it if they needed to. We are learning that there is a drug to fix almost everything at U of M. However, when they went to give it to Ava she broke out in a rash and they assumed she was allergic. A little Benadryl took care of the rash and they decided to just watch the heart rate overnight. It seems that with Ava she often just needs more time of "watching and waiting". This morning her heart rate was back to normal! What do you know?

They also "sprinted" her (took her off the ventilator) yesterday four different times for an hour at a time. They also did it twice today. She did very well so they decided to extubate her (take her off the ventilator/breathing tube completely. For those of you who read my husband's posting that is what he was talking about, I hope it is now more clear. Anyway, they warned us that many kids don't do well with this and not to be surprised if she ends up right back on the ventilator. This can be because it is too much work and she is not ready or because her throat is irritated so much from the tube being there for so long that it can swell and cause bad oxygen flow to and from the throat. Well, they put a high oxygen tube in Ava's nose to help support her. She was still in control of all her breaths and had to do all the work but oxygen was being shot into her nose. She hated this. It was very confusing to her, you could tell. She wasn't sure what to do with her mouth or her nose. Her blood gas afterwards was not good. They were discouraged and thought for sure she'd go right back on the breathing tube. There was one more thing to try. It is called C-PAP. She has a little oxygen mask on her nose which not only shoots oxygen through her nose but also shoots pressure to expand the lungs too. She was doing well on this when we left at 10:00. Her blood gas looked "stellar" the respiratory therapist reported.

So this is where we will stay for a few days. They think that getting some more fluid off of her will help her lungs expand better so that she could go on high flow or, better yet, normal flow of oxygen. They will probably put her on a diuretic again to reduce some of the fluid. She's been urinating very well but is still carrying some puffiness in her chest and abdomen. This will keep us in ICU longer than expected but I guess that's not necessarily a terrible thing. We love the nurses over there and she gets more one on one care. We knew this was the next big hurdle.

A HUGE THANK YOU to my Howard-Ellis family for all of the wonderful gifts, food, supplies, gift cards, money, etc. Your overwhelming generosity to our entire family is so greatly appreciated. I feel so incredibly fortunate to work with such kind and caring people. We have already, eaten, worn, and used many of the items. The gifts are so uplifting which is just what we needed right now. It was like Christmas as we opened everything in the hotel room on Saturday! Even Brayden had several "big brother" gifts to open. Ava is so lucky to already have the love and support of so many people that haven't even met her yet.

Speaking of love and support: I gave a young lady (maybe 18-20 years old) a ride over to the hospital today from the Ronald McDonald House so she wouldn't have to walk. She had a baby girl by c-section ten days ago (so she's still healing) and her baby will have heart surgery tomorrow. She is from Ohio and is here by herself! My heart ached for her as I know that this experience is so incredibly difficult even with tons of support from family and friends. Of course I gave her our room number and told her to call if there was anything we could do to help her. I am asking that you all keep her baby daughter in your prayers along with Ava. I'm not sure of her name because I forgot to ask, but God will know.

Brayden is here and we are so glad. Tonight as I was crying on the phone to Heather (I sometimes just need a release once in a while) he told me "Big girls don't cry". We immediately all started laughing. He also likes to sing the phrase "I want to be a rock star" over and over again. Okay, so maybe he's spending a little too much time with Aunt Heather and his cousins (HA, HA)

Thank you Emilee, Janelle and Sara for visiting today and letting me show off my sweet Ava. It was so nice to see the three of you.

Jamie and I feel so incredibly lucky these days to have two beautiful children, a wonderful family, great friends, and so many other caring people in our lives. We appreciate all of your prayers, kindness, and support each and every day.