This morning before the C-pap went on.Last night when Tiff and I went to bed we were very encouraged by Kaya's progress. She was off the vent, breathing on her own and getting rid of the rest of the junk in her lungs. This morning I went up to see her and she was doing well. I got pictures of her with just a canula in her nose. Went back with my dad an hour later and the neonatal Doc hit me with a laundry list of problems. They had to put her on a C-pap because she was having a hard time breathing. She has air that has escaped to the outside of her lungs through a small tear and is building in her body cavity, It's going to require a needle through the ribs to tap it and let it out. Sign this consent form. They later decided not to do it as the air pocket is shrinking. Next, partial paralysis on her face. Not sure why but maybe a nerve that got stretched during delivery. Next she has a body that is small. Head is normal size but body didn't get everything it needed from the placenta. Which then leads to her lungs and diaphragm. The diaphragm is not developed correctly on one side and may require surgery. Doc says he wants to review the x-ray with the surgeons at Primary Childrens and possibly move her there for all of these problems. Do you have any questions? I told him my brain was still back on the C-pap machine.
So there you have it. We have one very sick but very strong willed little girl. So this is where we are now at 5pm. The Surgeons at Primary's think the diaphragm problem may not be the whole problem with the lungs, so we wait.
The air pocket is shrinking, so we wait.
The facial paralysis may or may not ever go away, so we wait.
They want to send chromosomes to the lab to test for genetic defects, syndromes, that may be part of a larger picture that is causing so many problems, or it may just be that the placenta didn't do it's job very well, even though Tiff did everything right.
So we wait.
Tonight they are going to do a songram of her brain to check it out.
So we wait.
Then they'll sonogram her heart
so we wait.
Then at 8 they will take another X-ray of her chest to check the air pocket.
And so we wait.
From what I can gather we expect to be in the NICU somewhere between another week and a month. It all depends on how our little girl progresses. Currently she is sleeping soundly with her Cpap and her array of wires and tubes,
and so we wait.
On an up note Tiff did get to hold her for a minute.
Our plugged in baby girl.
So there you have it. We have one very sick but very strong willed little girl. So this is where we are now at 5pm. The Surgeons at Primary's think the diaphragm problem may not be the whole problem with the lungs, so we wait.
The air pocket is shrinking, so we wait.
The facial paralysis may or may not ever go away, so we wait.
They want to send chromosomes to the lab to test for genetic defects, syndromes, that may be part of a larger picture that is causing so many problems, or it may just be that the placenta didn't do it's job very well, even though Tiff did everything right.
So we wait.
Tonight they are going to do a songram of her brain to check it out.
So we wait.
Then they'll sonogram her heart
so we wait.
Then at 8 they will take another X-ray of her chest to check the air pocket.
And so we wait.
From what I can gather we expect to be in the NICU somewhere between another week and a month. It all depends on how our little girl progresses. Currently she is sleeping soundly with her Cpap and her array of wires and tubes,
and so we wait.
On an up note Tiff did get to hold her for a minute.
Our plugged in baby girl.
12 comments:
Paul, she is beautiful! Congrats to you, Tiff and the boys! Looking at these photos brings back all of the emotions of when my little guy was in the NICU. They are so helpless and you would do anything to make them healthy and whole! Stay strong... she will be ok. "Waiting" totally sucks but she is in good hands and they will fix her! Luv u guys!
Kaya looks beautiful even with all of the tubes and wires. Best of luck to her and all of you. The more I learned in school the more I came to realize the "the miracle of birth" referred more to the fact that any of us make it out of the birth canal (or C-section) than any other cutsy fact. Keep asking questions of the team involved, most health care providers don't mind it when parents want information, even if they are busy. We can't wait to meet her and see the progress your two other river rats have made.
I am so glad Tiffy was able to hold her. Love all her hair. She is gorgeous!!! She has been in every prayer, by many in just our household alone. The kids wont stop talking about her and worrying about her. We'll continue to send our prayers and love your way.
If the boys need to play we are right here. Any time!!! Love you guys!
I think she looks like Noah. She's so cute! Can't imagine what you must be going through - but I know the doctors at PCMC are the best. She'll be well taken care of there. Congratulations and we'll keep Kaya in our prayers.
Alan is sitting here with me, and we are sending our love for you and your family! Team Zubs love is coming your way! :-) I'm there with you, and hope everything goes okay for you and your wonderful family. Kaya is absolutely beautiful.
Oh paully, you have been a strong daddy! Thank you for letting me in the Nicu to see my beautiful new niece, where I got to talk to her and she responded with an eye twitch. I felt pretty special, I can already tell im her fav aunt. We are all pulling that the tests will be fine! Lv you guys have a good night! Mich
Paul & Tiff... I am so happy she is here but so sad for what you are going through. That mix of Palfryman stubborness and Murdock toughness will pull her through. Hang in there. Our prayers are with you.
She is such a beautiful little girl. My heart is so heavy for you guys. My thoughts and prayers are with you constantly. Please tell Tiff I love her. Thanks for the updates...
Paul and Tiff I am thinking of you and your family. Sounds like Kaya is like her Mother; a hard-knocked fighter and will pull through this, just a long road for everyone. I am so sorry Tiff. You are one of the strongest people I know. Luv ya Tiffs. Paul you journal this so well. You and Tiff will be so glad you did. Good luck guys,
Nat
I'm so sorry for all of the worry you guys have to go through. I would love to watch the boys if you need help with them! Please call me if I can help!
Contratulations Paul and Tiff. She is a doll. I talked to your Mom at noon today Wed. the 28th and the update was encouraging. You are all in our prayers. Tell Tiff what a good job she did. She is so darling, I can't wait to hold her. I told your Mom and I mean it, I can take the boys and afternoon or evening and both Wendy and Crystal said they would be glad to help. Use us....Take care, Love you all! Aunt Pitty Pat
Exciting, scary, and everything inbetween. Congratulations on the new arrival. We'll be praying for all of you as she continues to improve.
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