A long day at the hospital. We did finally increase the feeds this evening to 3mL/hr which is going well. Other than that, not a whole lot going on. Noah's weight is still at a standstill, and so we have increased the lipids in his TPN again. If that doesn't get us some weight gain we will have to increase the glucose again, which means losing more time unhooked from the pump. Hopefully if we can get his feeds up, then we can stop increasing the TPN calories and start some decreasing of the TPN instead.
We have been talking to the team about trying to get home soon. As much as I know they want us to stay and work on feeding, I think I will go nuts here waiting to get to full feeds. Now that they know Noah a bit, hopefully we can get a plan together to get back home in the next couple of weeks and continue this process at home.
On September 21/05 we were blessed with a beautiful son. Born with a chromosome 12q deletion (q15q21.2), the challenges were many...cleft lip/palate, complex feeding issues, developmental delays, failure to thrive, multiple infections, blood clots, asthma, sleep apnea, GI and pulmonary bleeds, TPN dependency and kidney issues. Noah embraced life and taught us how to love. On July 29/09, Noah's journey ended, leaving us on a new journey...this journey on the pathway of grief...
About Me
- Nichole
- I am mom to 3 beautiful children. I also work casual as a nurse. Our life is a crazy one, and nothing like we ever expected it would be. Yet, this journey has changed me and the way I view others. And it has helped us slow down and enjoy the most precious things in life. I wouldn't trade those lessons for anything.
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7 comments:
praying for strength for you all and wisdom for the medical team! hopefully then can get you home quickly, but even if you can't God will continue to strengthen you there!
Even if feeding progress is slow, it is progress! Yeah Noah! We're praying that you will be able to come home soon too! Hugs to my Bean...
I sure hope you're able to come home soon Nichole!
We will pray too that you can possibly go home soon. You have dealt with that problem before, so praying that it coulod happen. "Stand still then,and be utterly amazed at what the Lord your God is about to do before your very eyes". we are believing for a miracle. mom
As Kim said, some progress is still progress...but I can hear your desire to get home so your family can continue to be together.
Praying for patience, strength and peace for you all.
Is there anything I can do to make your days brighter?
Alison
praying you are home soon! do you like your new camera?? the butterfly pic is really good from your previous post
praying you are home soon! do you like your new camera?? the butterfly pic is really good from your previous post
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