Today started off good like yesterday and then it got better instead of worse for a change. The "Free air" outside the lungs has dissipated on it's own
The eventration (sp)? which was the diaphragm problem that almost sent us to Primary Childrens was not seen on this mornings X-ray as large as it had been. It will be watched but is not presently a huge concern.
Kaya is Breathing on her own, no tubes, no C-pap, no canula. Her breathing is good although her lungs are still a little cloudy with meconium.
The facial paralysis is likely a damaged nerve from being born and may never go away. Not sure how evident it will be.
All of these things were combined with some mysterious dots on her head. The dots were black and down both sides of her head in a symmetrical pattern and had the Docs completely baffled. They were thinking some kind of genetic disorder. Each of the NeoNat Docs had different thoughts. Possible birth marks, other things I can't pronounce. The Attending Doc this morning had been online on medical journals looking for answers and had been measuring the spots. We started to discuss the spots and I commented that it looked like someone had used a magic marker to spot her head for identification. The Doc laughed and said she also thought they looked like ink. Then she said "just for fun let's see if they rub off" she grabbed an alcohol rub and proceeded to rub off the strange genetic defects. I thought Tiff was gonna pass out, then she and the Doc had a little cry over it. Turns out that when they did the brain scanner for the seizures they had to mark her head, but they failed to wash it off, or communicate it to anyone else. So there you go, Occam's Razor says the simplest solution is usually the right one. Kaya is currently sleeping easily and has been eating (from a tube) and digesting well. We are extremely encouraged by her progress while trying to remain cautiously optimistic about the coming days. Our thanks to all of you who have kept our little girl and us in your thoughts and prayers, it's working.
And now for the pictures.
Sleeping peacefully
The tube is just a feeding tube
The obligatory pink bow.
I got to hold my daughter for the first time.
today it was a good day.
She even tried to open her extremely swollen eyes for her dad.
That's Daddy's girl right there.
The eventration (sp)? which was the diaphragm problem that almost sent us to Primary Childrens was not seen on this mornings X-ray as large as it had been. It will be watched but is not presently a huge concern.
Kaya is Breathing on her own, no tubes, no C-pap, no canula. Her breathing is good although her lungs are still a little cloudy with meconium.
The facial paralysis is likely a damaged nerve from being born and may never go away. Not sure how evident it will be.
All of these things were combined with some mysterious dots on her head. The dots were black and down both sides of her head in a symmetrical pattern and had the Docs completely baffled. They were thinking some kind of genetic disorder. Each of the NeoNat Docs had different thoughts. Possible birth marks, other things I can't pronounce. The Attending Doc this morning had been online on medical journals looking for answers and had been measuring the spots. We started to discuss the spots and I commented that it looked like someone had used a magic marker to spot her head for identification. The Doc laughed and said she also thought they looked like ink. Then she said "just for fun let's see if they rub off" she grabbed an alcohol rub and proceeded to rub off the strange genetic defects. I thought Tiff was gonna pass out, then she and the Doc had a little cry over it. Turns out that when they did the brain scanner for the seizures they had to mark her head, but they failed to wash it off, or communicate it to anyone else. So there you go, Occam's Razor says the simplest solution is usually the right one. Kaya is currently sleeping easily and has been eating (from a tube) and digesting well. We are extremely encouraged by her progress while trying to remain cautiously optimistic about the coming days. Our thanks to all of you who have kept our little girl and us in your thoughts and prayers, it's working.
And now for the pictures.
Sleeping peacefullyThe tube is just a feeding tube
The obligatory pink bow.
I got to hold my daughter for the first time.today it was a good day.
She even tried to open her extremely swollen eyes for her dad.That's Daddy's girl right there.
13 comments:
This update had me laughing and crying and every emotion in between. Seriously...the dots? hilarious.
So happy you got to hold your baby girl today. Prayers are still being sent from our little family and hopefully tomorrow will be another "good news" day!
Please tell Tiff we are thinking of her. :)
made me cry. seeing you with your beautiful little angel. there you have it... i'm a total cry baby now.
sending my love //
I am crying too....we are praying for you guys and your sweet beautiful little girl!
huge sigh of relief going on here - can't even imagine how you're feeling ;) i worried all day today and this postjust makes me so happy for you guys. thanks so much for the updates. keep em comin!
btw, joe and i loved your commentary of occam's razor! WTF doc??
hellllooo...maybe aliens abducted her in the night!! sorry, i'll stop now ;)
LOVE IT! Oh I was in tears when I talked to paul this morning! I seriously wanted to do a cartwheel or something! Those pictures have me in tears again! I haven't cryed this much... ever! Im so glad you both got to hold her and that she is doing oh so good, better! What a sigh of relief. I pray that the paralaysis will go away. Hopefully her lil eyes won't be so swollen with all of the dang tubes shoved by her eyes! Lv the bottom pict. Im sure she is so comforted by both of your voices! She looks like a newton! Lv the PINK bow too. Paully did you lv the elephant? Sophia picked it out just for you! More lv and prayers comin your way! I hope you Have a more sound rest both of you tonight. hugs mich ps I can't wait to hold her!
Your Mom called earlier and told me the whole update, but it is so awesome to read your version of your sweet daughter. She is so darling, thinking she looks a bit like big bro. Noah. So glad that she is improving. Much love. you'll all be in our prayers.
I had no idea this was going on so when i started reading the first and second blog, my heart dropped and i felt very sick to my stomach. But after reading this blog there is a lot of relief! i pray things continually get better, and want to congradulate you guys on a beautiful girl.
Shes a little Gloria! What a cute kid, I'm just not use to seeing newborns so small! Good to hear shes doing better.
Holding your baby girl for the first time is a special moment. Glad to see the improvements. Little miracles are all around us.
Maybe it is the pregnancy talking, but I started crying seeing you hold her. She is beautiful, and you guys will do great with her. She is so blessed to be in a family who loves her so much.
Gosh Paul. After all these years, I thought you were finally done making me cry. Thanks for the updates. Good luck.
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