Friday, November 7, 2008

Look Mom and Dad, I'm totally breathing all by myself!

Nayeli gives life without the high flow nasal cannula a siskel and ebert big thumbs up!

We went to the DR's morning rounds meeting again. The DR's lowered Nayeli's oxygen input to 1%. Nayeli is now a one percenter....for those in the know. The DR's said to keep working on feeding and they beleive it will get better day by day. They still want to focus on getting Nayeli taking all of her feeds by breast or bottle. Nayeli is not there yet and still gets tired and frustrated while she eats. She is getting better, and has taken as much as 45 cc's or so between the two before having to be given the rest of her food via the feeding tube. Not much else has changed on this front and we hope Nayeli gets stronger each day and is able to eat more. Nayeli has a strange pattern going right now as she seems to sleep most of the day and is then restless at night. Most parents would complain about this, but we are just happy for every day we have with our baby girl. We are so lucky. Liz is doing a heck of a job having to wake up every three hours to feed our baby girl and keep up with her food intake. We thank God for her strength and commitment to this difficult task!

Late this morning, we were standing at our daughter's bedside wathing her sleep and make her cute facial expressions. She has such a cute personality. We noticed Nayeli's nasal cannula was completely out of her nose and her stats appeared to be the same. The DR came in and our nurse today told the DR there was really no need for Nayeli to have the cannula. Initially, the DR said to put it back in and wait one more day, but he then looked at her stats and said, "Never mind, go ahead and take it off." The staff left the equipment in the room ofcourse to make sure things go smoothly, but they do not anticpate putting it on.

All that's left now is the feeding tube and Nayeli is already working on taking it out herself. We just went in there to check on her and she had a handful of the feeding tube in her hand. We took the tube out her hand and told her to be patient because it will gone soon enough with Gods blessing.

The blessings keep on coming. We can almost taste taking our daughter home, but realize we are not there yet. A new CDH baby arrived last night, and there is another one in the room with our daughter. We remember those first few days and it feels like a year ago. We have come so far and thank God for our little miracle. We pray the blessings keep coming. We thank everyone for your continued prayers and support!

Nayeli usually falls asleep and farts when daddy burps her.

Mommy burps our little bundle of joy!


Anonymous said...

Yeah team Nayeli! What a big girl you are breathing on your own :) Sending big hugs and kisses your way. You keep sleeping and eating away big girl! Tell mommy and daddy our hearts are with them, we think of you guys all the time.

Lots of Love, Mike and Tera Fischer

Anonymous said...

oh we are sooo happy for you guys!!!!!!!! what a great update! prayers for the new "kiddos" and all of you guys! what a great team you guys make! i cant believe the support and faith everyone has for each other! it is TRUELY inspritionial!! prayers from those who will probably never meet you!!

Elizabeth said...

Nayeli is such a show off! ;-)

Feeding is usually the hardest part - well the second hardest part but it seems to slow down so much - patience...she will get there!

Keeping you all in my thoughts and prayers and still sending Miss Nayeli LUNG FUNCTION chants,

Amy Leonard said...

Congrats to Nayeli for breathing on her own! Keep up the good work so you can go home to your beautiful bedroom your parents decorated for you with so much love. Shane, I love your posts - you are a great writer and choke me up almost every time.
Warmest wishes, Amy

Jenna said...
This comment has been removed by the author.
Jenna said...

Congratulations Nayeli! You are doing great!

I will give everyone at the meetup the good news. They will be so excited to hear how wonderful you are all doing!

Jenna & Will

Anonymous said...

Don't fret too much about the breast feeding, it is difficult under normal circumstances.Any Mom will vouch for that !! Sounds like she is doing well and catching on...Lots of Love her way !
-Jenn Ray

Kaden and Angel Ava's mommy said...

YAY!!! I am so excited for you all. What a little blessing. She looks wonderful and of course pretty in pink!!! I loved the video of her fighting her sleep in yesterdays post. She is such a cutie and I can not wait for you guys to get to take your baby girl home.

Thinking and praying for you all.

DEE&JIM said...

It is so wonderul to hear how well Nayeli is doing. God has been watching over this new family...she is wantin' to go home!!! All those prayers are paying off!

Gail said...

Great news guys..but it doesn't surprise me seeing that Nayeli is beating all odds with her progress. You say that there are more cdh babies that have arrived, you guys can have the chance to "pay your good fortune forward" by encouraging the "new parents" and showing them what a little faith, love and persistance can do. What a blessing. And may I add, that is one gorgeous baby!!Hang in there with the will come along, she is working very hard to prove to everyone that she is anxious to get home and relax in her own crib! Love to all, Gail

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

What great news! So glad to hear she's doing well. Keep up the great work!

kathy said...

I am so glad to hear taht Nayeli is doing so well. You guys are in my thoughts and prayers!

Anonymous said...

So happy to see that day by day she is doing so great! The progress is amamzing and your happy faces are such a joy to see!

Tracy Meats said...

Awesome news that your princess is breathing on her own!! God is Great!! She will get the feeds down soon and it will improve with each day. I think once Nayeli is home without all the "hospital" noises and distractions she will take off with her eating and just thrive. Many prayers for a good week!!

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

Anonymous said...

Amazing! She'll be home soon!

-Megan, John's mommy

The Rice Family said...

Congradulations! What a big girl. It is always so exciting when those yucky canulas come out. We will be praying for you and hope you get to go home soon.