October 27, 2011

It has been a long couple of weeks, but the hope, love, and support that everyone has sent me is hopefully helping. The doctors have put me back on steriods, and unfortunatly, this will be a longterm journey. Nobody knows the longterm effects of this, and that scares mom and dad a lot. Hopefully, I can get down to a low enough dose, and then grow enough to be able to breath without the steroids. It took three days on a high steroid dose before some help was seen. My oxygen is now down around 40%, and hopefully Monday I will be put back onto the conventional ventilator. I have gained some weight, and now weight 7 and a half pounds! Continue to send your love... I will be needing it as my journey is still far from over. Lots of love to everyone!

October 17, 2011

As the course of the NICU goes... I am again having a difficult time. Last week I was retaining a lot of CO2... so the doctors put me back on the oscillator. Since then, my CO2 has come down, but today my oxygen requirements have gone way up. The doctors decided to start steroids again, however, there is no way of knowing if this is going to work. Tomorrow, they are going to do a heart ECHO. If the heart muscles have been working too hard, then the heart will be enlarged and there is not anything that can be done to correct that. Mom and dad are very scared... as the doctors are not sounding very hopeful. This is a very hard time for us all... I will try and keep this updated, however, as things progress... it may become more difficult. Thank you for the continued love and prayers.

October 2, 2011

Happy Fall to everyone. As the weather starts to get colder, I hope that everyone stays warm. I am perfectly warm here in the NICU. I am continuing to grow and slowly showing progress with my breathing. I am still on a very small does of steroids, and will be getting off those in about a week. There is always the possiblity of having a set back after the steroids, but hopefully they have had me ween down slow enough that there will not be much of a problem. I am currently on the vent, but with no backup rate. That means that I am doing all of the breathing myself, with pressure support. I now weight 5 pounds 15 ounces, and am as cute as can be :) I had my second trach change yesterday, and all went well. The next change will be in two weeks, and mom and dad are supposed to do that one. They are also starting to do more of the care with me. They are starting to suction the trach and dad will be helping me with a big bath tomorrow night. They are even going to bring my tub from home so that we can have a special bathtime!!! I am up more throughout the day, and when I am awake, I am offered my bottle now. Sometimes I enjoy it... but if I am sleepy, I would rather not take it. Mom and dad also brought me a dvd player and some movies that I can watch throughout the day. This gives me more to look at... I love the colors in Nemo, The Incredibles, Elmo, and Big Bird! So... there is still no timeline as to when I may be coming home, but things are moving along, slow and steady.

Love from my daddy!



I am exhausted



I like watching movies!

Tummy time