Where We Are Holding

Avigayil's breathing on the new machine is like night and day. Her breathing slowed, her oxygen saturation where more stable, she had more energy and slept less (she was sleeping more than 20 hours a day). She even started to play with things and smile a little. This was a big one for me since she is generally such a happy smiley baby and she hadn't smiled in over 3 weeks.

Then she got sick.

She has a fever, vomiting, diarrhea, difficulty breathing. She had been doing so much better and they are not sure yet what caused the complete turn-around. Several doctors have seen her including the head of pediatrics. They are trying to work out what to do with her. In the meantime she is on a special food for the diarrhea and on IV fluids because she was dehydrated and losing weight.

On the side of the insurance. They told me today that they are approving a package for us that will include not only all the machines that she needs but also home visits from doctors and nurses. We are really happy with this development and we think  it will do her good.

In the meantime, we are in a very nice large private isolation room and are now just waiting for her to get better so we can go home. Everyone (including the insurance company) wants to be cautious about sending her home. They only want to do it once she is doing much better. So we will wait. Please keep daving for Avigayil bas Rivka Batya.

Lifeline

Avigayil was readmitted yesterday to be put back on vapotherm ventilation. She is switched over but has been having a rough time.  In general she doesn't recover well from anything and this was a major change.

While this is a major setback for her, I know that this is what she needs right now. When they first brought in the machine I had an unexpected rush of emotions, not because of the setback, but because of the machine itself.  For months this machine was my enemy and my best friend.  It kept my baby alive, but it kept her in the hospital far from home.

This time around,  hopefully things will be different.  We are hoping to get the home machine appoved quickly and to see improvement from it. After months of seeing no improvement in her condition and weeks of watching her deteriorate we are holding on to what we hope will quite literally be a lifeline for her.

 Please keep her in your prayers.

Update

It's been a while since my last update. Avigayil has been fairly sick in the last few weeks and that has been keeping me very bus. We have been to the hospital 4 times in the last 3 weeks and to the pediatrician numerous times. Our pediatrician and pulmanologist are now on a first name basis and calling each other's cell phones. (As Dr Gross put it "You know its not a good thing when I call his secretary and she says, 'oh this must be about Avigayil.'")

We have had some scary episodes with her breathing and her heart rate. B"H (Thank G-d) the cardiologist says that her heart is ok and is only being affected by her breathing. Her oxygen requirements have been much higher than normal recently and she is very uncomfortable all the time. So, to make a long story short, it looks like she may have to go back on ventilation. She is just having a very rough time on O2 only and the theory is that if we give her more help to breathe her lungs can have a better chance to heal.

We are waiting for her pulmanologist to decide how and when to bring her back in but it will most likely be soon after she finishes her current course of steroids.

Meanwhile, the results of Hand to Hold's Preemie Power contest came in. While we did not win the library for the hospital we did get a special prize for most votes. I wish we could have helped the hospital, but knowing that so many people care and took the time to help us really raises our spirits, especially now, when Avigayil is having such a rough time. Thank you to everyone who voted. We will try again next year.

One last thing I wanted to mention. I had a special post planned for International Preemie Awareness Day last week but, as most of you know, there was a horrific terror attack in our neighborhood that day. Between Avigayil being sick (she was admitted to the hospital the next day) and neighborhood being in turmoil and mourning, I did not get to finish it and post it. I hope to post it soon. Please forgive my lateness.  

WE DID IT!!

Hand To Hold announced the finalists in the Preemie Power contest. Avigayil made it!!

http://www.preemiebabies101.com/2014/11/2014-preemie-power-finalists-selected/

Thank you to everyone who voted for her! She is now competing against two other babies to win her category and the against the other categories to win the library. The final rounds of voting are done by NICU professionals. We truly hope she will win for the hospital.

Thank you again to everyone who supported her in this.