Setbacks

I have not posted in a while because things have been a little crazy lately. Avigayil has had some setbacks. Shortly after nursing for the first time she started having some serious problems with her breathing. Her saturation levels kept dropping and she was having a lot of trouble breathing. Her O2 level was up to 60% or more.

This also caused problems with her eating. She was unstable while not eating so it was too dangerous to try to give her feedings by mouth. She was unable to take any feedings by mouth for over 5 days.

To try to relieve some of her breathing trouble they doctors backed off on the amount of milk she was getting.  They added extra calories to the milk to try to prevent weight loss. Even so Avigayil lost over 100 grams.

In addition, because of her under developed lungs, instead of taking in more air when she cries, Avigayil looses oxygen when she cries. I spent a lot of time holding her and keeping her calm to try to prevent her saturation from dropping too low. 

Then on Friday she had a crisis.  While I was holding her her saturation dropped into the low 40's (it should be 100-97%). Fortunately the doctors were in the room. It also happened at shift change and there were extra nurses there to help too. They got her saturation back up with manual ventilation and then switched her to a different type of ventilation.

At this point it was decided to give her a course of steroids. I was basically told that this was a last resort treatment and that it was only given in severe cases. B"H (thank G-d) it has been working.  Her drops are less frequent and less sever and she even took a bottle a few times today. If she is stable enough we may try to nurse again tomorrow.

She is still loosing weight but they are upping the amount of extra calories they add to the milk and hopefully that will help.

It is very frustrating to have setbacks. It is also hard to watch babies who were born after her, but at an earlier week and smaller weight be moved to intermediate care. By far though, the hardest thing for me now is to arrive at the hospital and watch smiling, happy parents taking their new babies home.

Had Avigayil's only problem been prematurity she would have been home by now. However, that is not what Hashem (G-d) wanted her lot to be. She had IUGR and low amniotic fluid This is our nesayon (test) to weather right now. We believe that Hashem does not give tests that a person is not equipped to pass. As hard as it is, we will keep going until we have passed our test.

One source of inspiration to get us through has been the amazing effect Avigayil has had on others. Every comment, every email, every text (although not always answered) is greatly appreciated. People we don't even know have stopped us in the street to ask how she is doing.  People we have never met have cried with us and have shared our triumphs. You can't know how much that has ment to us.

Its not just people who are following her story that she has effected though. She has taken the NICU staff and other parents by storm. Everyone knows our little Avigayil. She is the only baby who repeatedly extubated herself. As a redhead people take notice of her, but once she has their attention she earns their love. Avigayil loves people. Sometimes she cries just to get someone to talk to her. She loves being held and touched. Many of the nurses have told me that they spend extra time holding her because she responds so well. She even cuddles up to them. She has a pleasant manner and actually interacts with people. We look forward to the day when she can interact with the world outside the hospital walls.