Wednesday, April 21, 2010
Just an Update
Skylar has had a hard couple of days because her little belly is giving her troubles. For the past 2 weeks or so, after almost every feeding she vomits. Skylar is on many medications and it's upsetting her tummy, but it could be reflux or something else. The last couple of days she has refused to eat by the bottle and she is not taking enough to be able to get her ng tube out of her nose. Sadly it looks like she will be getting a g tube put in her belly which will allow us to feed her through her tummy, if she does not eat by mouth. And she can go home with the g tube in her belly unlike the ng tube down her nose that she cannot come home with. In the next week or so she will be having the tummy surgery. The things that make Ryan and I nervous about this is not the actual g tube, but the fact that she will be intubated again. It's scary because worse case, she could get stuck on the tube and have to be weened all over again. If all goes well and the tube comes out right away and there is no infection and she comes back down to a low rate of .2 liters per minute, than she could come home in a month! Skylar is a strong little girl and she has gotten through so much that we think she can do this too! Please keep your fingers crossed and her in your prayers because we need this tummy surgery to go well. I will keep you informed and let you know how it all goes!
Thursday, April 15, 2010
Sunday, April 11, 2010
Tuesday, April 6, 2010
Saturday, April 3, 2010
Skylar is getting so big!
Skylar reached 8 pounds 10 ounces last night! Her chubby legs and arms are so adorable, she is our little chunk! Skylar's progress is an amazing thing to watch everyday. She is our little noise maker, constantly grunting and talking baby talk. She continues to put a smile on our face with her little expressions including the eye brow lift and scrunched face. Ryan and I love talking to her and even making faces at her because she will just stare at us trying to figure out what we are doing. The newest thing we have been doing with her is playing on a mat that is on the floor in front of her crib. We set up her baby gym and watch her play with the toys hanging above. Skylar has learned to scoot around on her belly and she loves to kick and wave her little arms! She is growing up and taking in everything and we love every minute of it! We are so thankful that there are cuddlers there to hold her when we can't be there and her nurses take such good care of her and we can't thank them enough.
As far as her health she is doing really well! The good news is that she is growing and gaining weight quickly. As she grows she will make new lung tissue and it will become easier and easier for her to breathe. Her oxygen settings still have to come down a lot, but she has made it from 2 liters to .9 in a couple for weeks. It is all a waiting game now. To go home her oxygen needs to be at a 16th of a liter, so it will be a little longer. Sadly we just got the news that her time frame of leaving the nicu will be from 3 more months to possibly being there her first birthday. The doctors can not push her on her oxygen because she has to do it all on her own. Unfortunatly, her severe lung disease enables the doctors to get her home any faster. It is all a matter of time. Ryan and I are trying to focus on what she is, a miracle that had only 10 percent chance of living and that 1 year of her life in the Nicu is nothing compared to the rest of her life with us here. I'm not saying it's easy because having her home is all we want everyday and the hospital was old a long time ago, but it is all out of our hands. Everything is up to our little girl, she is so strong and we are just so grateful that we know she will be okay and that she is coming home. We want to thank everyone that continues to follow her progress and we know that all the prayers from everyone has brought our little family miracles. I promise to be better and updating everyone sorry it has been awhile.
As far as her health she is doing really well! The good news is that she is growing and gaining weight quickly. As she grows she will make new lung tissue and it will become easier and easier for her to breathe. Her oxygen settings still have to come down a lot, but she has made it from 2 liters to .9 in a couple for weeks. It is all a waiting game now. To go home her oxygen needs to be at a 16th of a liter, so it will be a little longer. Sadly we just got the news that her time frame of leaving the nicu will be from 3 more months to possibly being there her first birthday. The doctors can not push her on her oxygen because she has to do it all on her own. Unfortunatly, her severe lung disease enables the doctors to get her home any faster. It is all a matter of time. Ryan and I are trying to focus on what she is, a miracle that had only 10 percent chance of living and that 1 year of her life in the Nicu is nothing compared to the rest of her life with us here. I'm not saying it's easy because having her home is all we want everyday and the hospital was old a long time ago, but it is all out of our hands. Everything is up to our little girl, she is so strong and we are just so grateful that we know she will be okay and that she is coming home. We want to thank everyone that continues to follow her progress and we know that all the prayers from everyone has brought our little family miracles. I promise to be better and updating everyone sorry it has been awhile.
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