Sunday, November 9, 2008

Sweet Dreams of Going Home!

Nayeli has a strange sleep pattern right now. She is like daddy.....a night owl. The last few days, she has spent a greater part of the day sleeping. It seems like the hustle and bustle of shift change between 7 and 7:30pm wakes her and she gets moody. We usually manage to calm her down before we leave in the evening, but nurses tell us she gets pretty moody at night.

We are still having some difficulty getting Nayeli to eat a full meal at each feed, at least by breast or bottle. She continues to get frustrated, her respiration rate goes up a bit and she then doses off. I think the best we have done is about 45 cc's combined between breast feeding and bottle feeding. The lactation nurse told us that once Nayeli starts to dose off or gets frustrated, we need to take her away from breast feeding because she will start to except this as her "comfort place." So, for now, the feed tube remains to finish off her feeds. Nayeli is still working at pulling it out. We are praying and hoping her stamina increases so she eats more and they are able to remove the feed tube. We suspect she will eventually go home on mostly bottle feeding, we just do not want to go home with the feed tube still in place.

Nayeli is also doing great breathing room air on her own with no added oxygen. Looks like the DR's will leave this off unless something changes. DR's do not anticipate any changes at this point and took the machine away yesterday. There's now so much space around her bed. We pray Nayeli continues to improve her strength and breathing.

We were reading the bible the other day and found a passage that moved us and reminded us of the power of prayer and faith in God. As we have mentioned before, we believe there is no other explanation for God's miracle with our baby girl. All of your prayers, as well as our own, have no doubt helped our daughter's situation.

2 Corinthians, 1:10
On him, we have set our hope that he will continue to deliver us, as you help us by your prayers. Then many give thanks on our behalf for the gracious favor granted us in answer to the prayers of many!

We thank everyone for their continued prayers and support. It means a lot to us and we read every single one of your comments!

On a side note, if there is anyone out there who likes to cook, we are dying for a home cooked meal once in a while! We are burned out on cafeteria food and do not leave the hospital as we spend our precious time with our daughter. We only leave to go sleep for six hours. Alex Hidas and Amy Harris have graciously brought us out home cooking and we loved it. If you are interested, we can make arrangements. All our love, the Nelson family! A special thanks to Alex and Suzzanne, Harris, and Marge Jensen for the great food, we loved it!

Hi Grandpa Telly Check out my view! If you look closely you can see the Golden Gate Bridge


Tricia said...

She looks AMAZING! Seriously, what a beautiful sight to see her looking so healthy and happy! Praise God from Whom all blessings flow!!

Tracy Meats said...

Nayeli IS doing so great!! I do want to add that if after weeks, all that is keeping Nayeli in the hospital is feeding and an NG tube, I say to ask to go home. All that kept our Ian in the hospital the last week, was getting to full feeds. He took what he could by bottle and we used the NG tube for the rest. At night time when we were not at the hospital, he even refused to take the bottle from the nurses, he loved having mommy or daddy feeding him. The NG tube is not scary and we had to insert it many times after we got home, but they do teach you that before you are sent home. Within 3 weeks of getting Ian home, he was thriving and taking all his feeds by bottle. With each feed, he would take more and not get so tired. Ian would try so hard to finish his bottle and would fall asleep. If Nayeli is gaining the weight she needs with the bottle/breast and using the NG tube--she is doing amazing and it will just take time to reach those full feeds. Once she also gets her nights and days fixed that will help too. Many prayers for a good week--I love reading your posts about Nayeli and we are cheering her on in Wyoming!! Thank you for sharing your precious gift with the world!!

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

Lexi's mommy said...

Way to go Nayeli. You are on your way home. I am also a CDH baby and recently left the Children's Hospital In Philadelphia. I am thinking of you and sending you my very best of wishes.

Lexi Rose

Elizabeth said...

She is absolutely adorable. And you could go home with the NJ tube many go home and once settled - that tube is gone...

Love the pictures!

With thoughts, prayers, lung function and eat chants,

Kaden and Angel Ava's mommy said...

She looks GREAT!!! I was wondering since she seems to have her days and nights mixed up, if the reason for her fussy nights is because she wants mommy and daddy to hold her, and doesn't realize that you guys have to get your sleep. Will the nurses hold her at night when she starts crying...I am sure they do, but know from experience that they can't always tend to them because they are busy. Do they have baby swings in your NICU. Maybe they can bring one in and when she gets fussy at night, they can put her in one to see if that would help soothe her. I know it worked for my son. He loved the swing...absolutely loved it. I think it is because he was so used to me rocking him ALL day long. Just a thought.

I am glad that she is doing so well. I hope that she can take full feeds soon. Just a hint though...the thought of having to take care of the NG-tube is a lot more scary then actually having to do it. If you learn how, you will be a pro before you know it.

Jenna said...

All great news!

The meet-up went great on Saturday. Nayeli was all we could talk about. I gave the group the latest updates. Everyone is so happy to hear how wonderful she is doing.

Will is texting Shane as I type for a meal request. Will is now on his rotation and has Wednesday, Thursday and Friday off this week. So we can pop over either of those days.

Anonymous said...

guys,,, i would sooo love to cook you a meal,,, however,, i dont think it would travel well from ATL!!!! thank you for the update and continued GREAT news! prayers for all of you!!!

Cindy said...

Ugh, I remember being so burned out on hospital cafeteria food! Hopefully you will get some home-cooking soon.

My daughter never had a feeding tube, but struggled with full feeds by bottle during her last week in the hospital. We ended up fortifying my breastmilk with some formula powder so that she could drink less and still get the calories she needed. She gained that way and we got to go home.

Terri said...

OH you guys are doing soooo good! It won't be long. 45mls? That is fabulous baby Nayeli. Don't let them tell you that isn't amazing in itself! She is just gorgeous and oh is it going to be a glorious day when she goes home. Keep up the sweet dreams, it IS working.

Love you both!

~Terri and Brian

Gail said...

Wow..she is amazing...great bible verse says it all in very few but powerful words...Don't fret, she will be eating better every day, and like some of the posts say, you two are such could easily learn what you needed to with the tube..She is so beautiful and gives so much hope to CHD babies everywhere, Love and prayers to all, Gail

Sonya Wilson said...

Nayeli looks so healthy and relaxed!
Should I deliver a meal to your dad and have him take it out to you? I would love to do that for you!