Wednesday, November 5, 2008

Baby Steps

Nayeli is doing well and continues to be as stable as can be. We love our little girl with all of our might!

Nayeli had an echocardiogram yestderday morning. They did not read the results until this morning when we met with the DR's during their usual morning rounds. The DR's have upped Nayeli's feeds to 65 cc's. They lowered her additional calories for a day or so and upped her breast milk intake because she had some problems keeping her food down. She is still making daddy proud with some neon brown breast milk poops....daddy loves his little poopy girl! When she poops, daddy fondly announces she has "poopy on her doopy."

The DR's said they plan to slowly wean her off of Lasics and will also lower her oxygen input from 3 to 2%. Nayeli is currently breathing room air on her own, but they are still giving her some high flow oxygen through the nose cannula to supplement her. Yes, I said high flow cannula....Nayeli is off of the C-pap now too! Her breathing has come down a bit, but still ventures into the 100+ breath per minute range at times. The goal is obviously to get her off of the cannula all together.

In regards to the echo, we got wonderful news. The DR's said her lung and heart pressure is down considerably from the last echo and is just about what a non-CDH babies pressures would be. We were stressing about the results of this echo and feel very blessed to have received this news. We thank God for making our baby girl breath easier and also for keeping her pulmonary hypertension in check.

On another good note, Liz started breast feeding Nayeli last night. She took to it like a champ at first, and then seemed to get frustrated because it was so much work for her. Our little princess is not used to having to work for her food. Overall, she managed to get about 10 cc's from Liz and the nurse then fed her the rest through her feeding tube. Liz tried to feed her again a few hours later and Nayeli again got frustrated, cried, and fell asleep on Liz's breast. Today, Nayeli has been sleeping all day so Liz has not been able to try feeding her again. The nurses do not want to wake her to breast feed. They would normally do so, but baby girl had a rough night again last night and they eventually had to give her Adavan to relax her. The medication given to her has decreased substantially, but Nayeli still has some bad go arounds and needs a little help relaxing.

So, the plan for now is to continue trying to breast feed, slowly wean Nayeli off of the cannula, monitor her lung and heart pressures, and the fluid that is still present in her chest and lungs. The DR's did say they did an x-ray and the fluid level looks a lot better and the Lasics appears to be doing the job. I am sure princess will be very pleased the day there is nothing attached to her head or face.

More to follow!


Cindy said...

I'm so glad to hear that Nayeli is off C-pap and that her lung/heart pressure is down!

My CDH baby did the same thing as Nayeli when she first started breastfeeding. She got used to bottles and got frustrated at the breast. Just hang in there and keep trying (I know that pumping is a lot of work). After we got home from the hospital my daughter gradually got the hang of breastfeeding and loved it so much that she refused bottles after that.

Anonymous said...

Wow, Nayeli is doing great! I just love reading all the good news. John also gets frustrated about breastfeeding because it's so much more work. We tried it this morning and "he was just not that into me." :) But he did a little so that's good. I'm excited that Nayeli took 10cc's from Liz, that's really great! I'm sure when she gets home she'll get the hang of it. And from the sounds of it, that will be really soon! Way to go!
-Megan, Nik, and baby John

Brina's Momma said...

Nayeli is awesome. She is doing so well.... Look at her Daddy and Momma, so much love how could she not do good. Keep up the good work.
Love you guys,
Dan and Georgina

Stacy and Jimmy said...

She is just absolutely beautiful!
We are thrilled she is doing so well you are all in our thought

Elizabeth said...

She is doing so well! You both should be very proud! And Cindy is right - I have heard of more babes once they get home just take off on nursing at home. It takes time.

With healthy babes - as soon as they are born - you start to nurse them - she didn't get that at first and it is easier from a tube or bottle so - what do you expect. We all would rather do it the easy way! It also takes time.

Keeping you all in my thoughts, prayers and LUNG FUNCTION chants,

Tracy Meats said...

I am happy to hear that Nayeli is off the CPAP and just on a nasal cannula! I am sure she is much happier today. Many prayers that her breathing continues to improve and she gets the hang of the breastfeeding. Ian found it so much easier to eat from a bottle, because he didn't have to work as much and with his breathing issues, eating just tuckered him out quickly. Nayeli is making great progress and best wishes it continues. I love the picture of her asleep under her pink ladybug blankie!

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

Anonymous said...

Beautiful photos and great news! Sending good thoughts and prayers your way!

Annie & Mike

Kaden and Angel Ava's mommy said...

She looks so peaceful in the pictures!!! I am glad that she is doing AWESOME!!!

For the bath thing, have you guys try the lavendar baby soap. I think it really does work at calming worked for our baby girl anyway. On top of that is smells GREAT. Just a little thought to help try to relax her when she has her rough nights.

Thinking and praying for you guys always.


Gail said...

That news is fantastic!!!!!!! She is doing so good and I am glad she was able to come off the CPAP. She is just defying all odds and showing everyone how strong she is! Every day is one day closer to freedom for Nayeli and for you both to be able to enjoy her in the comfort of your own home. Great job guys..she is indeed a beautiful, wonderful little miracle and she gives great hope to alot of families who are now or will be experiencing the ups and downs of CDH!!! Love to all, Gail

charlie said...

Aloha, Da baby so cute! GREAT JOB!Glad to hear baby getting better. Much Love, Charlie

PIC said...

I don't have any advise about breast feeding, but love that some "normal" activity is afoot for your family. GREAT NEWS and great looking kid.

With love, PIC

Anonymous said...

What wonderful news! Nayeli looks so good in all the pictures! She is a fighter. We continue to send our love and support and many prayers for continued good news!

Jer & Jen Rocha

Anonymous said...

Shane and Elizabeth,
Nayeli is beautiful and my family and I are sending you love, prayers and happy thoughts. My daughter Kendall thinks Nayeli is a little cutie and she named her dollie after her. Hang in there,
Michelle Ratto-Branchaud

Megan said...

She is so precious! And so much hair! She is a doll and I'm glad to hear she is doing well.

Much Love,