Ellen is 25 days old, and we are still in the NICU at Primary Children's. The way things are looking, we may be here a few more weeks. Ellen's feedings are not going as well as I had hoped, and she's not going anywhere until we get that figured out. We will try bottle feeding her soon to see how she tolerates that. She still has a feeding tube and I am still trying to nurse her, but she just doesn't have a strong latch/suck. It's nice to hold her and try though.
She had a muscle biopsy on Tuesday, and everything went well. They didn't even need to sedate her. She will have a nice sized scar on her left leg to remind her of the fun she had here. The incision doesn't seem to bother her much anymore either. We won't get any results back for at least a week, and we don't even know that it will tell us anything. Other tests we are waiting on could take months.
We took her broken arm out of her sling a week ago to begin physical therapy. She was miserable for a few days, but now she is doing really well. She still hates physical therapy, but her range of motion is really improving.
Ellen had a "sleep test" last night to check her breathing, etc while she sleeps, we did this because Ellen seems to have the most problems with her breathing when she is sleeping. This could be associated with her general 'low-tone", but it could many other things too. She had one "episode" a few days ago when she was in a deep sleep, and the nurse had to give her forced air. This terrified me to see Ellen so blue and not breathing. It could have been reflux related, but we just don't know at this point. We will get the preliminary results later today.
Ellen is such a good natured baby. I don't think I would be so happy if I had been through all that she has been through the past 3 weeks. She is a real trooper! On the other hand, I am getting to my end. I am really tired of watching my baby girl get tested, and tested and TESTED! Some days, I just want to rip all of her wires/tubes off, break out of this place, take her home and just hold her. Patience....
5 comments:
We love you guys!
We are all still praying for you to find answers soon. You are so strong - hang in there.
Oh Anne, just keeping hanging on! Sorry it's going so slow.
Oh Anne, it breaks my heart. I hope they can come up with answers soon and help her so she'll be okay to go home. The poor little thing. We are still praying for you and hoping for the best for little Ellen.
Hi Anne,
I think about you everyday and am hoping they can give you answers soon. Hang in there and know there are so many people worried about you and your little family. We are praying for all of you!
Janet Broadhead
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