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