Sunday, October 26, 2008

Nayeli update

Nayeli is our precious little warrior and one heck of a fighter.

We went to visit our daughter and the Dr. came in to speak with us. The Dr. told us Nayeli is doing just fine. The Dr again said she is not concerned with the fluid in Nayeli's chest. She said they drained three tablespoons from her chest, and left about three tablespoons still in her chest. The Dr. said they left some of the fluid in her chest because they didnt want to shock her too much by taking it all out at one time. We personally do not care for them leaving fluid in her chest as it is still pressing against Nayeli's lungs and heart. We understand though why they didnt drain it all at once. I asked the Dr. if they are going to increase their amount of x-rays to make sure the fluid isnt building up faster than they anticpiate as we do not want more pressure on our daughters heart and lungs. The Dr. pretty much said they do x-rays every day and that our daughter will tell them if she is having an issue by her stats dropping. I dont care for this approach, but again, she is the Dr and she knows best. All in all, Nayeli seems back to her normal self and is making less boo boo faces. As soon as the Dr's give us a definitive answer, we will let you all know.

We thank everyone for their support and prayers, we are still pretty stressed about this situation. To boot, Liz was supposed to be discharged today and the Dr. became concerned about leg pain she was having. The Dr said she may have blood clots in her legs and stopped her discharge and ordered an ultrasound. Liz just had the ultrasound and we have not got a confirmed response yet. The ultrasound tech did say the ultrasound looks negative.

More to follow.

16 comments:

Terri said...

Oh my! Well Liz I am sorry to hear that your legs are sore. This I'm sure is the furthest thing from your mind. All you want to do is spend time with your baby. I know.

Now as for Nayeli and her xray if you feel she needs one in a few hours (6 hours would be resonable time) please voice your concerns. There is NOTHING wrong with easing your mind. Please be your child's voice. Don't be intimidated by the doctors and nurses, you have what they don't parents instinct. The squeaky wheel gets the oil.

We are praying for you all!

~Terri

Maxton's Parents said...

I will be praying for you all tonight. I hope that Liz's leg starts to feel better and that little Nayeli continues to fight and that the fluid doesn't increase. You are in my thoughts.

Ashley

Kaden and Angel Ava's mommy said...

First off all, as I have said before, Nayeli is a gorgeous little girl. And man does she have a ton of hair or what?

I hope that the x-rays show improvements and that the fluid doesn't continue to build up. I am kind of curious what would cause the lymphatic fluid (if that is what it is)...my daughter had a big problem with that after her heart surgery and they told us it was due to something being damaged during the heart surgery. I just want to throw this out there (not thinking at all this is what it could be, but to inform you just incase the fluid continues so you can question the doctor about it) but in our situation, after our daughter passed they found in the autopsy that she had something called lymphangectasia (I think I spelt that right). It also causes drainage. I just want to make you aware of this possibility if things continue to get worse or if the doctors seem to have difficulty staying on top of the fluid. I am not trying to scare you guys, but want to make you aware of this so IF it does become problem you can question the doctor about it. I always found it helpful when others who experienced similar situations as myself would leave their experiences on my comments page.

Ok, enough of my rambling. Liz, I hope that you start feeling better and that there is nothing serious going on with your legs. I continue to keep your beautiful family in my thoughts and prayers.

Amy

Tricia said...

First, she is gorgeous! (But you knew that, right?

Nayeli continues to be in my prayers! You've got a strong little girl there!! ♥

Deb said...

Shane and Elizabeth,
She is beautiful! I love that hair!

I'm so sorry things have gotten rough, please call if you need anything!

The prayers continue, as well as support and love.

Anonymous said...

Thanks for all the updates. We love the photos. Especially the one with Liz and Nayeli, so precious!! AND, all that hair. You're cute too, Shane. Our thoughts and prayers continue for you all!!

Ron & Nicole

Amy said...

Dear Shane & Liz,

We so wish we lived closer but know that we are thinking of you constantly and I just know in my heart that your warrior princess is going to get through this! I know you are only worried about Nayeli but please take care of yourselves too. Stay strong and hang in there. We are praying for you! Love, Amy & Jon

Jenna said...

Hang in there. One day at a time.

Brody is giving my hand kisses as I type, I think they are for you guys.

Brums said...

She is BEAUTIFUL!! We continue believing in the power of prayer,and expecting only the best. Remain strong in your faith, (Literally!) she is a fighter! Can't wait to meet her!!! Heidi and the Brums

Alex & Ingrid Houchin said...

Hey guys,

You have so much to deal with, we're in awe of how well you are coping. We hope that Nayeli will continue to improve and the fluid levels won't increase. She is such a trooper, we are sure that you'll be able to take your beautiful daughter home soon. And Liz, we hope that the pain in your legs will ease up. Do take care of yourself, you've been fantastic so far!
You are in our thoughts and prayers.
Hugs,
Alex, Ingrid & Alina
By the way, love the pictures.

Anonymous said...

wow! you guys are troopers! so strong and brave! keep up the positive thoughts and know that prayers continue for ALL of you! shane, keep taking great care of your "girls"!

Gail said...

Shane and Liz..you guys are in the roller coaster period right now, I remember it like it was yesterday..ask, ask, ask,,,don't be afraid..there are NO silly questions and you have every right to ask the Doctors and nurses anything concerning Nayeli. Just remember too, they ALWAYS give you worse case scenarios...I think it is a way to cover all of the bases. She is already doing 200% better than my son did at this juncture and he is a CDH survivor and thriver for 25 years. Hang in there. Liz, take care of yourself so you will be strong when Nayeli comes home and i do mean WHEN she comes home. Stand strong together and like I said, don't be afraid to question anything. Love to all, Gail

SWilson said...

Liz, we are praying for you to be healthy! And for Nayeli to surprise everyone with her will to recover and be strong!

Fer said...

I am so sorry to read that Kiz has leg pain, but it's better be safe. I keep waiting for another uodate on both Liz and Nayeli.

Betsy Dellinger said...

Liz,

I'm sorry you're having some complications with your legs...I sure hope it isn't anything, but maybe it will keep you in the hospital closer to Nayeli another night!!

If it is any comfort, Ned had chest tubes placed after both of his major surgeries because they said he was highly likely to build up fluid. He actually didn't, but apparently it must be really common for them to have anticipated with him as well.

Thinking of you all....you're in my prayers!!!

Paula said...

I hope Nayeli has been giving you a boring Monday. My son's only real setback after surgery was also fluid build up, but after a few days it was resolved...I hope the same is true for Nayeli. As for mom, I really hope that is not a blood clot. Hopefully it is just her body's way of telling her to slow down a little. Sending out prayers to your family.

Paula (mom to Wyatt, 11 months, LCDH)