Battle with Right-Sided Congenital Diaphragmatic Hernia (CDH)

Daisypath Anniversary tickers

Daisypath - Personal pictureDaisypath Anniversary tickers

Lilypie Second Birthday tickers

Lilypie - Personal pictureLilypie Second Birthday tickers

Lilypie Pregnancy tickers

Lilypie Pregnancy tickers

Thursday, July 29, 2010

Whitney's off ECMO, and Today is the Surgery

Yesterday at first was looking to be a pretty predictable day. We were going to go to St Joseph's Hospital and visit Whitney like we always do, enjoying her spirit of life and adoring her beautiful little body. The doctor's had tried to ween Whitney off the ECMO machine the previous day or two, but she didn't tolerate being off ECMO too long, so they increased the ECMO support and decided to wait a little before trying it again. We called the hospital yesterday morning and they said they confirmed that they were going to try and ween her off again that day. We brought some parents with us to also visit with Whitney. We got to the NyICU at about 12:30pm and they let us in to see our daughter. We weren't by Whitney's side for more than 30 seconds when the Neonatologist doctor came up to us wanting to talk with us about Whitney...

The doctor said that they tried to ween Whitney off during the morning, and it was amazing successful with no complications. So the doctors said that they were ready to take off the ECMO machine that very same day, in fact they had it planned for a 3pm removal. Again, not a minute or two after he said that, the surgeon walked into the NyICU and said that they were actually ready to take it off NOW, and they asked that we leave the NyICU so that they can create a sterile environment to perform the ECMO removal surgery at once. We were really surprised, and we were like, "Really?! So soon? Is it safe to do it now? Is Whitney ready?" Everyone there pretty much had smiles on their faces and said that while this is a surprise, this was a really good surprise, not an unwelcome one.

We left the NyICU and sat in the waiting area. Everyone else who had babies in the NyICU also got booted out with us in order to ensure they had a sterile environment to remove the ECMO. We were really nervous, but an hour later, the surgeon walked into the waiting room and told us that they completed the procedure and Whitney was officially off ECMO and that she continued to be stable. Actually, she seemed more stable off ECMO than she was on ECMO at this point.

The Neonatologist ordered a X-Ray on Whitney's chest, and yet again the results from the X-Ray were nothing short of miraculous. The doctor showed us side by side images of the her X-rays from previously and today. Before, she had very little left lung capacity and no sign of a right lung at all, yesterday while she was on ECMO her little lungs were collapsed and there was no air inside them and so you couldn't see them at all on the X-rays, they were collapsed mostly because she was on ECMO and she wasn't really using her lungs all that much. But then today after they removed ECMO and put her on a normal ventilator, the X-Ray showed that she not only had some left lung, but that it looked like she had a NORMAL size left lung for an infant! The X-ray also showed what might possibly be a bit of inflated right lung as well, althought they can't confirm that for sure, saying it might actually be the left lung protruding into the right chest cavity. They will be able to confirm how much right lung she really has if any when they perform the corrective surgery.

We've thought about it long and hard and have decided that a miracle has been wrought here. Her ultasound pictures showed (and I quote) "a bad left lung, and a worse right lung." This dismal picture was also confirmed through an MRI scan. And now the X-rays show a normal looking left lung, and possibly just maybe some functional right lung tissue. This is wonderful news, but how did this happen?! The doctor couldn't explain it, but says that they so far have been blown away by how well Whitney has been fighting. I've no doubt that Heavenly Father is aware of Whitney and his inbox is being flooded with prayers and faith for Whitney's recovery.

The doctor that is normally all about gloom and doom is now very optimistic for Whitney. He originally kept reminding us that these babies only have a 20% chance of survival trying to prep us for a sad ending. But now this same doctor is talking about what Whitney's FUTURE may be like. It was SO nice to hear this for the first time. Nobody has ever mentioned anything about what might be in store for Whitney's future simply because they didn't think there would be one. He explained to us the challenges up ahead in regards to feedings, explaining that ECMO survivors are sometimes able to lead normal lives. He said that since one lung was bigger than the other, that pressure on the spine may be uneven and that when Whitney reaches her teens, she might develop scoliosis. He explianed that since ECMO is a relatively new procedure (its only been around for about 40 years or so), they obviously don't know what the long term effects are or what the expected life expectancy is, but that they oldest ECMO survivor to date that had it as an infant is now either in her late 30's or early 40's.

As we listened to the doctor explain all these things, all we could really hear was "you'll be able to feed her," "she'll live through her teens," "she might be able to live a normal life," "She may live to her 40's and beyond." We understand fully that she won't the most healty girl ever, but now we have hope of raising her. The nurses are very careful not to give her too much artificial oxygen so that she doesn't go blind, and they didn't see any bleeding around her brain so hopefully she won't have mental handicaps.

Of course, she still has many hurdles to jump over before we are in the clear. The surgeon made it clear to us that although she looks great today, she could decline, deteriorate, and die at any time due to a number of complications. Again, a little gloom and doom there, but talking with the nurses that take care of all the NICU babies says that ANY baby could deteriorate any any time and that ours isn't at anymore of a risk of that happening than any other baby now that she's off ECMO. I hope that's true. Her next big hurdle is the CDH corrective surgery. This is scheduled for today (7/29) tentatively at 7:00pm Arizona time. Even being off ECMO (which is a 100% better compared to being on it), there is still a significant risk of not surviving the surgery. So Alicia and I are still scared because it indeed would be very sad for us if she got this far only to return back to heaven from this hurdle. Of course we acknowledge that the Lord has his timing and his purposes already set in place and we are at His mercy. But we are REALLY praying hard that Whitney can make it past this surgery. We love her so very much and she is and forever will be a member of our eternal family.

Whitney has already received a Priesthood blessing (some people were still wondering about that) and so all Whitney needs now from everyone is their continued prayers and faith.

FUN FACT: Whitney is the 367th patient at St Joseph's Hospital who has ever received ECMO treatment since 1987 (which is when this hospital started doing it).


  1. thomas & alicia this is magnificent news!! i am well aware of the many prayers being sent your way, i am sure you are feeling the power of faith and love that is being sent to your family. i am a friend of leslie styler's and have been following your blog and the story of your beautiful baby girl. you guys are so strong and you are both wonderful writers. you have touched my life and made me appreciate so many things so much. i am also a new mother of a baby boy. i cannot imagine what you both are experiencing but i think of you guys often throughout my days and i pray for whitney often. stay strong and know that there are so many people far and wide with you and your sweet sweet baby girl in their hearts. with love, yasmin tohidi whitmer

  2. That is such incredible news guys! I'm so happy for you I'm crying! We will indeed continue our prayers and faith, and a lot of extra prayer tonight around 7 for her to be strong enough for the surgery.

  3. I too am crying tears of joy for you and your family. God is AMAZING! I totally agree that heaven couldn't ignore the chorus of prayers for your little girl- I have everyone on my blog praying for her too. I will continue to hold her up in prayer and know that God is going to bring her out of a successful surgery tonight.

  4. Good luck with your surgery, baby Whitney! You'll do great, for sure! We'll say a little prayer for you with baby Quinn during our visit tonight. Quinn says the second day after surgery is the worst, so know that you'll be feeling better after that. Big hugs for mom and dad as well, this is a hard, but encouraging day for them.

    Much love, little one.

  5. Truley Our God is a God of miracles! We're both praying hard for you both and your little one. I hope its His will that she makes it. She is SUCH a cutie pie!! I love the hair and the little bows! What a doll!