Sunday, November 15, 2009

Progress and small set backs

The girls have had a good weekend. Haley was able to come off the ventilator yesterday, and be put back on cpap. Haley seems to be having a difficult time with the cpap. Not that she isn't tolerating it, but that she can't stand to have it in her nose. I can only imagine how annoying it must be to have air constantly blowing in my nose. She has had some set back with this surgery. She is back on TPN along with feeds and her cpap settings are higher than when she initially went on it. We hope she will get back to where she was, but she will be having another surgery in December to have her small intestines reconnected so she will probably be set back again. Hopefully she will be able to recover quicker next time since she will be older and bigger. We also hope sometime this week we can get her back with her sister at The Woman's Hospital of Texas. Haley will have her eye examined by the pediatric ophthalmologist surgeon on either Tuesday or Wednesday to see if any more surgeries are necessary. If all is well with her eye she should be cleared to be transferred back.

Haley not liking the cpap. Texas Children's Hospital uses a different cpap than Woman's and I think Haley is having a hard time adjusting to it.

Rachel has been doing really well the past week. She has steadily been weened down on her cpap settings in preparation for tomorrow. Yes tomorrow they are going to take her off the cpap and try her on a nasal cannula. We are so excited for this to happen. We hope and pray she will be able to tolerate the nasal cannula. I think she will definitely enjoy the nasal cannula much better than the cpap. Like Haley I think Rachel can't stand the cpap. It seems to annoy her as well, but it has served its purpose.

Finally got a close up shot of Rachel with her eyes open (at least one eye). She doesn't like the camera flash at all.


  1. So glad to hear that rachel will be off CPAP soon!!! Hopefully haley will join her soon1!!

  2. Good luck tomorrow baby Rachel what a big day for you.
    Yeah for Haley getting off the vent.
    Keep up the good work girls.

  3. My daughter, Kailey (23 weeker), had an ostomy created in Summer 2006 and reconnected that December ... just like your Haley. We were able to take her home for 3 months in between. The ostomy care was gross and painful for her but still worth having her home. I hope you are given that opportunity, as well. Her ostomy closure surgery recovery was only about 5 days. I trust the same will happen for Haley. Once they learn how to breathe on their own, it's easy for them to get back to that point again after surgery.

  4. I am in awe of how far they've come! They are so strong! I'm sad to hear of little Haley's setbacks, I hope she bounces back quickly. I can't believe how well Rachel is doing with the CPAP and that she'll be switched to the cannula! That's awesome! I hope that goes well and she's able to tolerate it. I know what a huge step that will be! Hopefully little Haley will settle into having the CPAP soon and use all that energy to just get better quick! Thanks for sharing your sweet family with us!!

    Praying for you always,

    Christina McKinney

  5. I'm so happy for the girls! I'm sorry little Haley is not adjusting well to the CPAP, but soon she will. I hope she gets back to the Woman's hospital as soon as possible. But, at the same time, I'm glad she is out of the vent. She is moving on! Go Haley, go!

    Some time ago you said that Rachel is in 'cruise control.' I think that was a great way to describe her! I love the way she just goes along and continues to improve. Good job Rachel!

    I continue to pray a lot for your family. I love all of you.


  6. Love those babies! just LOVE 'em! so glad for progress. they are blessed to have wonderful parents and terrific care at the hospitals.
    can't wait to hear they are together again.
    a canula will seem like a walk in the park for Rach - Haley will be catching up to her momentarily. hope her surgery will go well - make life lots easier!
    I Love you, Stansel Family!! Erma, Midvale Utah

  7. Wow, I hope today's cannula trial was a booming success! That would be awesome! Hopefully Haley will see what her sister is up to when you get them back together and catch up really quickly!

  8. Eventhough I haven't posted in awhile I want you know that I still follow your blog and pray for your family everyday. I am so excited for Rachel tomorrow, that is a great step forward to go to cannula!


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