Yesterday I walked into the NICU and saw this. I started crying, it was totally unexpected. She was looking up at me and her eyes would roll back in her head. I got 2 minutes with her. It was so great, I was in a good mood all day. Then they had to sedate her again. She also moved from her oscillatory ventilator to just the regular ventilator. That's a huge step for her. They are hoping to have her on room air in 2 days. Today she didn't make any progress, but she didn't digress either. Her jaundice is back. Because she is older the lights won't help, so more meds.Thank you everyone for keeping her in your prayers, it means a lot to us.
Ruth Mac was in the NICU, it was so hard not only for our relationship, but being with all the other Mother's and father's too. The staff are so supportive though. She is totally getting the right stuff she needs right now. She is gonna and is it looks like rock your world. How precious..
I'm glad things are looking up with Davy. We're thinking of you guys and keeping you in our prayers. Hang in there Davy! (Did I ever mention how much I love her name? So cute!)
that's so great! she looks totally alert in the first pic. and that's so good that she's so chubby, too, definitely the biggest baby i've seen in the nicu. :)
I am "the mom" to 3 boys and a little girl. Through taking a microarray test, we found out that my Davy girl has a rare chromosome deletion. I have written this out in hopes to find others who have any similiar conditions.
Davy has a microdeletion of 1p31.1-1p31.3. She has panhypopituitarism, a cleft lip and palate, Congenital heart defects(asd, vsd, pda and had a CoArc). She had a surgery for malrotation of the intestines, and a g-tube put in to feed her. She has GERD with esophagitis dysphagia. She is on multiple medictions that need to be given round the clock. Three of those she will need for the rest of her life. To read about her journey start here.
I started crying, it was totally unexpected. She was looking up at me and her eyes would roll back in her head. I got 2 minutes with her. It was so great, I was in a good mood all day. Then they had to sedate her again. She also moved from her oscillatory ventilator to just the regular ventilator. That's a huge step for her. They are hoping to have her on room air in 2 days.
Today she didn't make any progress, but she didn't digress either. Her jaundice is back. Because she is older the lights won't help, so more meds. Thank you everyone for keeping her in your prayers, it means a lot to us.
8 comments:
Oh my gosh Ruth.....her eyes are just so beautiful.
Big hugs to you and the family, and of course to sweet Davy Girl!!!!
Ruth Mac was in the NICU, it was so hard not only for our relationship, but being with all the other Mother's and father's too. The staff are so supportive though. She is totally getting the right stuff she needs right now. She is gonna and is it looks like rock your world. How precious..
I'm glad things are looking up with Davy. We're thinking of you guys and keeping you in our prayers. Hang in there Davy! (Did I ever mention how much I love her name? So cute!)
What a little sweetie...I am so glad you were there when she was awake.
I'm glad you got a good awake time with her! I know the news will get better and better!
that's so great! she looks totally alert in the first pic. and that's so good that she's so chubby, too, definitely the biggest baby i've seen in the nicu. :)
Awesome! So happy for you!
A big 'YAY' for her, and you!
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