Saturday, August 29, 2009

The wild NICU roller coaster

We sure are experiencing a wild NICU roller coaster ride. We had no idea what it would be like. We are finding it out for sure. Our visit with the girls today was definitely emotionally draining. Today Haley was changed to the oscillator vent due to high carbon dioxide levels. Once they changed her to that vent her blood gases looked much better and she seemed to be tolerating it better. Haley also was having a high heart rate. It has come down according to the last report we got. Haley's feeds are currently on hold as well as her abdomen was a little distended. Ashlyn is up and down on her oxygen saturation's. They are having to adjust her vent settings, but are trying not to chase her ups and downs. The doctor states this is common for premature infants. It's so hard to see her going up and down so much. We wish she would be more stable. Rachel is pretty stable right now. Her vitals are good. She still has not been restarted on the breast milk feeds. These ups and downs are definitely hard to handle, but God is in control and we just have to rely on him. It's in his hands and all we can do is pray and love them.


  1. It almost gives you whiplash, doesn't it? Phew. Hang in there, and try to enjoy your time with the girls, even when the visits are so full of medical updates, changes, etc. I'm sure they are glad to have their mommy and daddy there with them! Thanks for the update - you guys are great parents!

  2. "This is just a bad day in a story with a happy ending" was my mantra on those hard NICU days. I am so sorry you have to go through this. My little ones went through similar starts and stops on feedings and breathing (including the oscillator, which I didn't like watching). I am very grateful to you and Thomas for allowing me to follow your journey; it is a healing experience for me to look back and remember these days.

  3. We continue you to pray for your little angels, I can't imagine what you are going through. Just know we love you and know that the Lord will continue to bless each of you along this blessed journey of life.
    Love, The Bergeson's
    p.s. you inspire us all and give us such an eternal perspective

  4. Hang in there. You are great parents and each day you are closer to the happy end. Unfortunately, the ups and downs are part of this difficult road. However, the girls are standing strong and already showed us that they are able to recover. They will still need help for a while, but I am confident that slowly they will need less and less. Thank you for keeping up with the updates and for touching so many hearts with your faith. The loving Father is watching over your family. All of you are in my heart and I continue to send lots of love and prayers your way. You are special people and will be blessed for that. I am sorry you have to go through the NICU rollercoaster, but it is all part of His plan (that sometimes we fail to understand). My daughter was a preemie with 5% chances of survival. Today she is here, healthy, smart, and those NICU moments are part of the past. You will get there! May God bless you and your beautiful family. I love all of you.

  5. Dear Thomas and Amanda

    We are an Australian family that has been following your journey since the start of your website. We are currently staying on an outer Barrier Reef Island (a few days holiday) and I've found a computer to log on and see how your beautiful girls are doing.

    Just thought I'd let you know that not only are people all over the world praying for you all, but on an outer island in the Great Barrier Reef in australia, someone is wondering how you are all going.

    With prayers for you, the girls and the Doctors and nurses looking after you all.

    M x

  6. Hang in there, day by day. Just remember that the NICU has to attempt to mimic (with technology of today) your womb and all that is done naturally. Not an easy task for the med professionals. Trust them and take it all for what it is. I hope they start to improve very soon.

  7. The NICU roller coaster is not a ride for the faint of heart. I rode that terrifying ride for 16 weeks with my quads and it is something I will never forget. I'm so sorry that you are all suffering right now. It is not all bad though, as this experience will change you forever. You will learn more than you have ever learned in your life and there will never be a time when you will feel the Savior closer. My prayers are with all of you that you have the strength to endure all that comes your way.
    God Bless,

  8. My girls were in the NICU for 10 weeks and it is not easy. Hang in there and rely on your faith and the prayers of all those around you. It is even more frustrating when they get close to getting to come home and then the littlest setback makes them have to stay another few days or another week. But it will all be worth it when you bring home those three precious baby girls!!!

  9. After spending four months in the NICU with our 24 weeker, we truly know what the roller coaster ride is all about. It is very draining and I do not wish this upong anybody. At the same time, throughout all the ups and downs we felt very blessed with our community, who also followed us on our blog (and still does 10 months later :-)and with the absolute amazing care our precious boy received in the different hospitals at which he stayed. We wish you all the courage in the world and hope that soon the day will come you can breath deeply while cuddling up on the couch with your precious girls!



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