Friday, December 11, 2009

UCSF CDH Clinic and CDH Research

We went to UCSF yesterday and it seemed like a long appt. We met with Dr. Slovatenick she is doing the CDH research. She talked to us about the research they are doing at UCSF for genetics on CDH. She explained that she would take a swab sample from Nayeli and test her DNA for the gene that causes CDH. The most accurate testing would be blood but for now she is doing the swab. She is also going to test us for it. She mentioned that Nayeli is the most important one for the research. She told us since it is still under research we won't be guaranteed a 100% answer.
Waiting for her swab testing. Not happy with her swab testing
After we met with the CDH research Dr. the next thing appt was for Nayeli to get xrays taken before we head over to the CDH clinic. Nayeli was not happy having her xrays taken. I am glad she didn't have to go in the tube this time.

We first met with the nurse to get her weight, height and picture. The developmental person was next. She will have to see the the developmental person every time we come to the CDH clinic for the next 5 to 6 years. She placed toys out and asked us a bunch of questions. Nayeli was moody since she skipped her morning nap. She was happy once she saw the purple teddy. She immediately hugged it and didn't let go. She had a hard time giving it back. The developmentalist said she is doing great for her age and for us to keep up the good work. The purple teddy was her favorite!Next stop was the nutrionist. She told us Nayeli is at the 10-25% percentile for her weight. She weighs 19lbs 14oz. Her height is 30 1/4 and is 90% percentile. She went over what we are feeding her. She was impressed on what we feed her. She said she is getting concerend with Nayeli's weight and wants to see her gain more. She mentioned that I should mix my breast milk with the whole milk when feeding her the the whole milk. I had another CDH mom suggest that on our blog, Thank you! They told me I can continue breastfeeding as long as I want. Since Nayeli is being more active she is burning more calories faster because she is breathing alot harder than a normal baby her age would because of the size of her lungs. If Nayeli doesn't gain weight she wants us to start giving her pediasure and other foods. Nayeli has a great appetite and it puzzles us that she is skinny.
Nayeli is getting hungry from us talking about foodWe met with the Doctors and Surgeons. They told us that her xrays looked good. There is no sign of reherniation but to always know it can still happen. They told us they are concerned about her hiatel hernia and they are keeping on eye on it. What this does is her stomach is close to her diaphragm and causes reflux. I posted a picture of it so you get the idea. We hope she won't need surgery. The medicine is helping so she hasn't shown any signs of it bothering her at this point. They increased her doses of Reglan to .9 ml and Ritidine to 1.2 ml. We will go back to UCSF in 6 months for another checkup.
Nayeli being examined
During our visit I spoke with Dr. Slovatenick the CDH research Dr. and asked her how they get funded and she said it's very minimal. It's enough to cover her salary and some medical supplies. I also found out that the CDH clinic is not funded at all. We started the Nayeli Faith Foundation this past summer. A week ago we mailed in our application for the 501c3 so our foundation can become non profit. We have started to help CDH families at UCSF and we are also going to help the UCSF research and CDH clinic. We are so eager to start fundraising for all of this. We hope to get your support and prayers that we succeed with this.

It was great seeing another CDH family there that we have become friends with.

Nayeli received her RSV #2 at Kaiser today. She has become familiar with her RN. Whenever she sees her she starts to cry.
Nayeli hugging me tight Pictures from earlier this week
Daddy where is mommy? I want Mama!
Pleas pray for Averi Hope who was born with CDH almost two weeks ago. She has been placed on ECMO and is having her repair surgery. To read more about her you can go to her blog located on the right side.


Kate said...

We did that swab research thing too- they mailed it to us seeing how we aren't really close to a hospital who deals with CDH. We hope it helped!!

The weight thing has confused me as well... our last RSV shot K had lost weight- but I felt as tho she had been eating well.. so I hear your frustration with that!! But then again I have noticed K's breathing is a bit faster since she has been moving a lot more! So she is burning a lot of calories but I guess that means she should want to eat more too?

I love the picture of Nayeli giving the look- she already has it down! lol!!

Aep said...

I think she is doing great!! Don't worry about the weight, it happens when they become more active... just wait until she starts walking and running.. but this happens to typical kids as well. Marco still takes pediasure once a day and whole milk once a day. He eats everything and eats well so we have gotten to the point of it is what it is.... getting them to eat, enjoy eating and eating enough is a bigger task so as long as she is developing well (which she is) and growing in height she is getting nutrition and you guys are doing a wonderful job!!!!
Have a great Holiday Season and take care!!
Nayeli is too cute and getting so expressive!

Alex, Ingrid and Alina Houchin said...

Nayeli looks great! Poor little ones, Alina had her swine flu and regular flu jabs and was crying her heart out. It's so hard to watch!
We're keeping fingers crossed that Nayeli doesn't need another surgery. She's doing great, what a little champ.
And love the pictures with daddy :).