Monday, November 10, 2008

Movin on UP...closer to Movin out


Nayeli's new view!

You are not going to believe this, but we went to the DR's morning rounds again. We will do this until the day we leave...we will stay by our baby girls side and make sure she knows we are there supporting her.

The DR's have raised Nayeli's feeds to 70 cc's a feed and they have stopped giving her Lasics. They plan to do an x-ray in the next couple of days the see what the fluid level is. They are still thinking it is surgery related fluid and suspect it will be gone or close to gone on the next x-ray. We really hope this is the case.

Today, we noticed Nayeli had some yellowish fluid around her left eye. It does not seem to be bothering her, but as you all know, as parents, it is driving us nuts. The DR's looked at it and gave us several different answers about what it could be. One said it could be conjunctivitis, a viral infection that could be treated with an ointment on the eye. Another idea is it could be a clogged tear duct and will either right itself or we would have to see a specialist down the line. As of now, they are just cleaning her eye with water and monitoring it. We are a little confused by this and since it does not seem to be bothering her, we will wait to ask the DR's more about it tomorrow morning unless it gets worst tonight. Pray this is nothing and it goes away soon.

So, the DR's are leaning towards taking the feeding (NG) tube out sometime tomorrow. They believe she is starting to take in enough food and want to start "ad lib" feeding her...in otherwards, feeding her when she asks for it. This works great for us as we spend our day with her anyhow. It is very hard on Liz and the breast feeding is very tiring for her. Liz said she feels like Nayeli is sucking the life out of her. We know princess Nayeli has special powers, but we are not sure about this one.

Today, Nayeli was moved from the sick baby wing (west) to the transitional wing (north). This is a big step in the right direction for our baby girl. DR's told us they anticipate us leaving in about a week (or a bit more)! We are so blessed and happy about this news, but also pretty scared. We know this is natural, but we worry about her due to her physical issues that can arise with her known condition. The DR's also talked to us about limiting contact with people when she does go home, at least during the winter months when the flu is going around. They reminded us how dangerous it can be for her to get sick because her lungs are smaller than most babies. They said that as she gets older, her lungs, and obviously her, will get much stronger and this issue will not be such a big deal. We are already talking about installing the same type of hospital grade hand cleaner dispensers at our entryway, and on the hall outside Nayeli's room.

Back to Nayeli's new room though....it is so quiet in there. We are hoping this is the change she needs to start feeding better. We are thinking there were too many distractions and noise in the old ward.

Right when we were leaving, the DR's brought a new baby in. There were at least 15 DR's swarming around. When we came into the the hall, we saw the Father of the baby pacing. We looked at one another and remember this feeling of helplesness. We felt terrible for him and asked him if we could get him anything. He said no, but we brought him some ice water anyhow. Please pray for him, his baby, and his family for strength, courage, and the faith to overcome whatever is going on with his baby.

More to follow.







video

14 comments:

Owain's mommy said...

Congratulations Nayeli and your move! That is so exciting in know time you will be home with your mommy and daddy!

Owain had the same problem with his eye when he was in the NICU and it turned out to be a clogged tear duct. By the time we brought him home at six weeks old it was gone.

I love the video of daddy's little girl and all the new pictures! Nayeli is absolutely beautiful.

alway in my thoughts and prayers and I will be looking forward to reading the next update.

Amber

Paula said...

I can't get over how pretty she is...and all that hair! She also looks super alert and interested in her world. It is so exciting when they start talking about home, but I remember getting nervous too. We did install the hand sanitzers in our home too. Just make sure you have moisturizer around too...that stuff is rough on the skin when used for awhile. My hands always looked like I'd been in one too many bar fights.

Keep up the great progress Nayeli!

Alex & Ingrid Houchin said...

Hi Shane and Liz,

That's excellent news! We are so pleased that Nayeli is improving so fast. You guys definitely have one fantastic little fighter! We hope that the yellow fluid around her eyes is nothing too serious and that you get to take her home soon.
Thinking about you two and your beautiful baby girl! Love the pictures!

Hugs from the UK,
Ingrid, Alex & Alina

Maxton's Parents said...

Awesome. I am so glad things are going well. Nayeli is so beautiful and I loved the video. I will continue to pray and look forward to hearing how she is doing!!

Daria said...

Yea! That's such fantastic news! I remember when Quinn moved to the less serious room and it did get less stressful for sure. I can't wait to see pictures of her in her own crib! Oh, and don't worry too much about the future - try to stay in the precious moment, day by day. xoxo

Amy Leonard said...

Wonderful news - great progress, Nayeli! My niece had a clogged tear duct - it's much harder on the parents than the baby, I assure you! What a beauty - love the photos and the video. Keeping you in our thoughts & prayes. Love, Amy

Gail said...

Well guys..what great news, I remember the exhilaration we felt when our son finally "graduated "to the next level..away from the craziness of the NICU. She is doing so well and she will probably be there, around your Thanksgiving table where I know everyone will give thanks for that miracle called Nayeli. Great job in comforting that new daddy too..you are truly paying your good fortune forward. Hopefully, his baby will be as strong as Nayeli. She is a beautiul little sweetie. Love and continued prayers for a strong and healthy Nayeli!!! gail

Anonymous said...

Heys guys! We are so happy for you!Nayeli is doing so good- what a fighter she is. She is absolutely beautiful and very alert. Congrats on your move. Before you know it, you will be heading home! Anthony had the yellow goo coming out of his eyes also- it was just a clogged tear duct and it went away quickly. You three are always in our thoughts and prayers. We wish you continued good news!
Jer & Jen Rocha

Anonymous said...

what great NEWS!!!!!!!! thank you for updating us and sharing your journey w/ all of us. many prayers for all of you guys!!

Anonymous said...

Congratulations Shane & Liz you guys have a beautiful daughter full of life, you don't have nothing to worry about because GOD is on her side, just keep your faith strong and all this one day is just going to be a bad dream.

Praying for you guys all the time Monica & Family (from Nick's)

Anonymous said...

I found your blog from another CDH baby and have been following along. What a tough little girl you have! I love all the good news. Liz - hang in there, you are doing a great thing giving your baby mommy's milk, it is so good for her! You are going to be totally exhausted no matter what, just remember how much easier it is to get the milk from the tap vs. measuring and mixing!

Tracy Meats said...

Congratulations on the move Nayeli!! One step closer to getting home. Many prayers that there are no more obstacles in your way baby girl. My first son had that problem with his eye and it turned out to be a blocked tear duct that we eventually had to do a tear duct surgery for--it didn't resolve on its own. Most blocked tear ducts resolve with time. You can always try a warm compress on the eye and see if that helps loosen the gunk in the tear duct for the next few days. Love the new pictures!! Keep fighting Nayeli and I look forward to the day you are heading home with mommy and daddy!!

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

Elizabeth said...

Great Move! And the eye could be something very minor - but I am glad she has such wonderful parents keeping the doctors on their toes!

With thoughts, prayers and LUNG FUNCTION chants,
Elizabeth

Shawn said...

Hey Shane and Liz,

I'm really glad to see the good news. I'm reading and catching up on all this, as your email to me with a link here made its way into the spam filter, thanks yahoo mail, and I just found it as I was picking thrugh the penis enlargement ads.

Man..I totally know the state of mind you guys are in....the photos are jolting..bring me back to this same time last year when wer were in the NICU for 2.5 months with our little guy....

Those nurses and dr's are something else...definitely some fantastic people.

Don't worry about the clogged tear duct...totally normal for NICU stays....our little guy had several over his stay.

I know right now life is a whirlwind..but a year from now..hell even 6 months from now...you'll look back and go, wow, that wasn't too bad I can do anything now. This will truly test your love for one another and once you perservere...nothing can stand in your way.

Deanna and I are thinking of you and your little girl....


here's some photos of Cole...amazing what a year will do after the NICU..you'll see!!!

www.flickr.com/photos/colesplace
Shawn and Deanna Peterson