Sunday, October 26, 2008

Urgent Update

Our morning started off great spending some time with our baby girl. She is such a beauty!!! Nayeli is doing great, they are planning on weaning her off of the ventilator in the next day or so. They also stopped her morphine drip and are now allowing Nayeli to tell them when she needs some medicine by making her "boo boo" face. She ended her morphine drip on the lowest setting, at 7 mcg. Now, when she needs some medicine due to expected surgery pain, the nurses are giving her .32 mcg. This dosage is given to her every 4 hours.

While I was typing this, one of Nayeli's Dr's came in and she looked pretty serious. Both of our hearts stopped because we have became familar with this "medical facial expression." She told us Nayeli has fluid in her chest between her lungs and heart on the left side of her chest (surgery side). She said they do x-rays almost every day and noticed this build up today. The Dr. said they suspect the fluid is one of two types of fluid. The first, and likely the cause, is fluid from the surgery. The second, could be a form of lymhpatic fluid that builds up due to nutrient "fluid diet" they are giving her. One way or the other, they have to tap her chest, take the fluid out, and send it to the lab for testing to determine what type of fluid it is. If it is surgery related fluid, they will monitor it and drain as needed. If it is caused by Nayeli's diet, they will change her diet to make the fluid build up stop. The Dr. said they have to determine if Nayeli needs a permanent tap until further notice. The biggest concern, which scared us both to death, is that the fluid started pushing on Nayeli's lungs and also started to push her heart back to the right side of her chest. The Dr. said she will tap Nayeli's chest and continue to monitor her. She said she will have more answers for us in a few hours, and at the longest, definitive answers by tomorrow morning. Lastly, the Dr. said she was not worried about this and said it is common and easy to deal with.

Please pray this doesnt become more serious than it already is. Liz and I are now on pins and needles even if the Dr. said she is not worried. Luckily, the hospital found a room to board us in tonight so we can stay as close as possible to our daughter.

More to follow.


mummy to angel SKYLA said...

Hang in there mum and dad. The Drs are doing everything to look after your beautiful girl. Nayeli is a tough little girl. look how much she has overcome already. Lots of prayers coming your way.

Kristy, mum to angel SKYLA LCDH

Elizabeth said...

I agree with Kristy here - she is doing really well and this is serious but it can be minor too. Be cautiously optimistic - they know what the issue is and they can help with it.

Come on Nayeli - you can do this.

With thoughts, prayers and LUNG FUNCTION chants,

Anonymous said...

Nayeli is a strong beautiful girl! She's a fighter and she will get through this. Sending lots of prayers your way.

All our love,
Jen & Jer Rocha

Anonymous said...

Come on can fight this!!!

Thinking of all of you!!!

Annie & Mike

Anonymous said...

Keep the faith and stay positive - it sounds like you are getting phenomenal care and your doctors will do everything possible to make sure your beautiful Nayeli gets through this. Hang in there and take care of each other too. Nayeli needs her Mommy & Daddy to keep strong for her! Love and prayers from CO,
Amy, Jon & kids

Terri said...

Liz and Shane my heart broke when I heard this update. Wow why do we have to deal with something else? I am praying so hard for your sweet baby. She is so pretty. Liz you look amazing! Shane what a proud Daddy! Thanks for adding the beautiful pictures. They are so wonderful. We are thinking happy and positive thoughts for Miss Nayeli.

Tracy Meats said...

Liz and Shane, our Ian went through this too. Ours was more related to his diet and he ended up with several chest tubes on both sides to keep things draining. The doctors are on top of things and are watching Nayeli closely. Nayeli is strong and a fighter. Many prayers that the doctors are able to find out quickly what is causing the fluid build up and get it resolved quickly. Nayeli is doing great and there are lots of prayers coming your way. Don't let this get you down--Nayeli is strong and she is a fighter.

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

Anonymous said...

Praying for you, Liz and Shane and Nayeli...praying that the doctors will quickly resolve the issue.

-Megan and Nik and baby John

Owain's mommy said...

I know how scary this whole CDH roller coaster ride can be. Stay strong.

Owain had something very similar after he had surgery. The doctors were about to put a chest tube in when everything just took care of it self.I will be praying extra hard tonight that the fluid will just magically clear up!

Keep fighting Nayeli! Your doing great!

SWilson said...

Liz,Shane, tonight I was in travail praying for you! During our worship at church we sang these words and I thought of you....
Hillsong United - Still

Hide me now
Under your wings
Cover me
Within your mighty hands
When the ocean rise and thunders roar
I will soar with you above the storm
Father you are King over the flood
I will be still and know you are God
Find rest my soul
In Christ alone
Know His power
In quietness and trust
When the ocean rise and thunders roar
I will soar with you above the storm
Father you are King over the flood
I will be still and know you are God

I pray that this song will minister to you. Our God is so powerful that He is able to hold you while you are shaking with fear and calm you....
Nayeli is in our prayers. My whole church is praying for Nayeli and following her progress!
Be blessed and stay strong knowing that God is at work here! We love you guys!

Anonymous said...

Hi - it's Rachel from the Cherubs site. We are praying for you all and I think you are both very courageous. I guess really it's one step at a time and you all have to do what's best for Nayeli - having confidence in the doctors is the biggest challenge too as we know, we are left in their hands, so we must pray for them as well. We must above all pray that Nayeli be 100% strong and determined. Babies are amazing fighters anyway and their advantage is how quickly they can heal.

Lots of positive thoughts and best wishes from Rachel.

Fer said...

My prayers are with you and little Nayeli.

Jenna said...