Thursday, April 29, 2010
They want her to get fed through the tube but we will continue to try and feed her with the bottle as well that way we are sure she is getting enough calories and nutrition to help her grow and keep her lungs growing/recovering. Physical Therapy stopped by today and showed me some things to work on with her, to hopefully get her back on track developmentally, with holding her head up and learning to roll over. Still waiting on what the next step is, home or Cinncinati first. Hopefully we will know something soon.
Wednesday, April 28, 2010
Elizabeth has been eating from the bottle since yesterday and seems to be doing ok with it, we worry alot that she may still aspirate so we are very particular about feeding her. Apparently you cant mix cereal with breast milk so the mixture she gets to eat now is: breastmilk, the neosure formula to add calories, and a gel substance to thicken it. They removed the feeding tube from her nose today, so one less thing one her! And a room finally opened up so we got moved out of PICU.
Monday, April 26, 2010
They are ready to move us out to a regular room but the hospital is full right now so no rooms available for us, so we are in one of the SMALL rooms inside PICU for right now, but hopefully they will get a room for us later tonight or in the morning.
Still waiting for her pulmonologist to stop by so we can disucss the Cinncinati trip and see what else needs to happen here before she can be discharged.
Sunday, April 25, 2010
We think that she has been so fussy lately because she is realizing that she hasnt had a bottle in quite a while, even though she has the feeding tube she still doesnt really ever feel "full". They have scheduled her for a swallow study sometime tomorrow to see if she can take a bottle again, so hopefully that will go well and it will help comfort her to be able to eat "normal" again. We think that we will start discussing the Cincinnati trip tomorrow as well with the doctors and start getting a plan together for travel/appointments and a timeline for when we will be going. Other than that nothing new, she is doing really well down to 1.5 liter oxygen and keeping her oxygen saturation at 100%. Hoping to get some new pictures to post tomorrow.
Friday, April 23, 2010
Elizabeth is doing well today, continuing to wean off nitric and wean down on oxygen on CPAP.
Wanted to let everyone know that they were possibly going to need the room we were staying in so we went ahead and "moved out". So we will not be in that room if you decide to stop by to visit.
Thursday, April 22, 2010
I forgot to mention earlier that today marks her 1 month stay in the hospital (again). Even though the past month has been unbelievably hard on all of us, I am grateful that at least we now have a diagnosis for her problems and are working towards treatment. She has been through so much and continues to show us just how much of a fighter she is!! Her personality is really starting to show, the nurses say that she is spoiled, she cries out if she wakes up and no one is standing by her bed :)
And she wants you to hold her pacifier in her mouth for her, good thing that glow worm is a good prop for it.
We hope all of you know how grateful we are for your support, help, and concern. We still have a long road ahead of us!
Tuesday, April 20, 2010
Thanks for all the support and concern!
Saturday, April 17, 2010
Thursday, April 15, 2010
Matt and I have both returned to work, trying to get some type of schedule down. We are so grateful for all the help that everyone has given us and for those who have helped take care of Elizabeth while we work. Hoping to get her home really soon! Will post our new location later today.
Tuesday, April 13, 2010
Monday, April 12, 2010
Thanks to everyone for your support an encouragement today has definately been a big step for her.
Sunday, April 11, 2010
We could definately see some of the withdrawl symptoms today but they gave her more medicine to help keep her comfortable, even though she was having a rough time she still managed to smile for us a couple of times! We can't wait to be able to hold her again.
Saturday, April 10, 2010
Friday, April 9, 2010
We want everyone to know how much we appreciate you checking in on Elizabeth and for the comments left in our guestbook. It means alot to us and I hope to print all of this one day and put it in Elizabeth's baby book so that she knows how much she was loved and cared about by everyone!