Saturday, December 20, 2008

UCSF Surgery follow up appt


On Friday, December 19th Nayeli was seen by the surgery team, a nutrionist and a pediatrician at the UCSF CDH Follow up clinic. During our visit, we learned all of the people there had CDH children. We wished we had known this as we would have talked to some of them to learn more.

They took x-rays of Nayeli's chest and she didn't like being held down. She is like this at home when we swaddle her. She likes her freedom and this worries Shane. Shane had a hard time holding her down because she likes to wiggle around. Shane calls her his little boogy woogy wiggle worm. In the end, I had to help and hold her too. Shane held her arms down and up above her shoulders and I had to hold her legs down. Unbelievablely, the x-ray tech had already put two different weights on her legs and Nayeli kept kicking them off. Nayeli cried so loud and the technician said this was great and what they wanted so they could get a good look at her lungs.

Nayeli became amazingly cooperative after being held down. After her x-rays she was weighed, measured and we talked to the nutrionist. She told us we have to keep fortifying my breastmilk each time Nayeli eats until she starts eating solids. We mentioned the gas problems to her and she suggested a different formula. Shane is going to get it tomorrow and we hope it helps our baby girl out. If it helps out, we will post this information and the name of the formula we swithced to. We were dissapointed to hear this because we feel this may be causing her to be gassy along with already being gassy because of her CDH.

The Surgeons said Nayeli looks great. During out visit, a lot of DR's and staff came in and checked Nayeli out. We were so distracted, but kept hearing staff say they wanted to see the miracle and "happy story baby."

Nayeli's x-rays showed that her left lung has grown and the DR's said her left chest is "now totally filled with her lung." We were extremely happy to hear this and asked them to repeat their comment again because we didnt believe what we had heard. Nayeli always likes to be on her best behavior at the Dr's office, and as with every other appointment, she slept the entire time.

In the end, Shane ended up emailing one of the CDH Dr's and asked a several questions. We felt so rushed and distracted we had a list of questions we forgot to ask. Hopefully the DR will respond soon and we will post her responses as they were very CDH specific questions.

We have been following Alina's story. She was born on Friday, December 19th. Please pray for Alina. She is scheduled to get her repair surgery within a day. To read more about Alina (see the link on the right side of our blog).

Nayeli getting xray

Nayeli sleeps as she waits to be seen by her Surgeons

Dr. Nobuhara holding Nayeli

17 comments:

Owain's mommy said...

I am so glad to hear the Nayeli is doing great!

Amber

Megan Larson said...

She is doing so wonderful. I'm glad she's had all that stuff done--is that part of your "package" of care for your hospital? We had a follow-up appointment about a week after John was released from the hospital but didn't have X-rays.

Glad things are going so well!
-The Larsons

Megan Larson said...

It's so funny how we were on each other's sites, posting at the same time! We will definitely have to have the kids meet each other some day. If you come up here to Alaska, come in the summer. It's gorgeous and stays above 60. If we come down there, I think we'll do it in the winter! :)

Terri said...

Liz and Shane,

I have to smile everytime I see your "little baby sunshine." I love, love, love her bows in that dark hair of hers. Just too precious. The left lung fully expanded, well that is some super huge, wonderful, Christmas news! Praise God!

~Terri

Anonymous said...

what a true BLESSING!!!!!!! she is so beautiful!!!! prayer for all of you guys!

Gail said...

That little warrior!!!! She is doing great! A full lung? That is amazing. Hopefully the change in formula will help the gas..I know Michael was on soy formula..don't be disappointed, you have no control over her gassiness...it will get better..just like she is getting better every day. hang in there and keep the "FAITH"...that is why you gave her that middle name. Prayers and love to you all and have a wonderful holiday. Love, Gail

Brad, Kellie, Lucy and Baby Carter said...

She's beautiful! It's probably a good thing you didn't know the other families were CDHers b/c you would still be there talking with them!! :)

Jonathan and Sarah said...

Man those chest Xrays are hard! Poor kiddos.. Noah hates them too.. no holding him down. I think that's the "fighter" in these babies! :) She is so cute!

Kaden and Angel Ava's mommy said...

She looks amazing!!! I'm glad to hear she is doing awesome!!!

Elizabeth said...

She is amazing! And everyone is in awe of her because of that! Until they get CDH under control - I truly believe the little angels are to watch over all these Earthly Angels...

Keeping you all in my thoughts & prayers,
Elizabeth

Pamela said...

Such a sweet face! Glad she is well. Hope the new formula works. Sometimes its a matter of finding which one works best for baby. Keep up the good work. Loved your cards. Merry Blessed Christmas!

Tracy Meats said...

What wonderful news!! Nayeli is doing so great and it sounds like you have an awesome follow-up program for her at the hospital. I hope the new formula helps some with her gassiness. Nayeli is absolutely beautiful and I hope you all have a wonderful Christmas!

Hugs, Tracy Meats - mom to Ian, born with a LCDH on 4/3/04 and WY and CO State Rep. for CHERUBS

Marion said...

I am so gald to hear that Nayeli is doing well. We have decided to go to UCSF for the delivery and subsequent care of Addison.
Thank you for all of your thoughts and prayers!

Anonymous said...

Happy Holidays and may God bless you all.
Nayeli, you are such a blessing.
Thank you Liz and Shane for sharing your beautiful Nayeli and her amazing journey.

Anonymous said...

That is wonderful news! What a blessing! We wish you all a wonderful Christmas with your gorgeous little girl!

Jer, Jen & Anthony Rocha

Fer said...

I'm glad Nayelli is doing fine!
Love,
Fer

Aimee said...

I am so glad to hear that Nayeli is doing good. She is so beautiful!