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5-12-15 Pediatric Surgeon

Yesterday was a big day. We got, as my mother in law said, "a brain full" of information. I am almost at the 30 week mark, I think. I honestly don't know exactly how far along I am.. every time we go in for an appointment I am either farther along or not as far as I think. Oh well, I'm not too upset by it.

We met with Dr. Scaife who works at Primary Children's as a Pediatric Trauma Surgeon. He was great. He told us everything we already knew but in a more detailed version. He started by saying that when Charlotte is born they will treat her as if she is the sickest baby they've ever seen. That's a normal standard. She will be immediately hooked up to a breathing tube, a feeding tube, cords and monitors and she will be sedated (in hopes to calm her down). We kind of figured this would happen but up until this point we hadn't been given a for sure answer.

A front view- my wardrobe is consisting of Chris' old fire academy shirts and yoga pants.

I tried and tired to get a picture of just how big this girl is getting with the gray shirt on but it wasn't doing my belly justice. So I changed.. just for a bathroom picture. haha But look at this!

The next two to three days will consist of just watching and waiting. Watching her lungs and her vitals to make sure they are stable enough for surgery. As soon as they are, they can take her away for surgery. He explained to us that the surgery is the easy part. As gruesome as it sounds; they cut her open and pull all of her organs that are up in chest down and put them where they should be. Stitch her up and take her back to the NICU to recover. If everything goes horribly wrong she could be hooked up to the ECMO (Extracorporeal Membrane Oxygenation) machine. It's a machine that works for the heart and lungs. While she will probably look better, the ECMO doesn't fix anything, it will just keep her stable, essentially, on life support. There are two ways the ECMO is used. We are hoping and praying she won't need to be on the ECMO at all but if needs be then there are two types. There is the VV and the VA, both refer to the blood vessels used in the treatment.

The VV ECMO is the better of "two evils". It will be used if there are problems in the lungs only and the tubes are placed in a vein. Like a shunt in the heart.

The VA ECMO is used if there are problems in the heart and the lungs, a big problem. The tubes will be placed in a vein and an artery (usually in the neck).

Being on the ECMO comes with many side effects, scary side effects.

A. Infection- with anything going into the body, that's always a possibility.
B. Bleeding- She will be given a drug to prevent blood clots in the tubing which means there is a more likely chance she can bleed.
C. Small clots or air bubbles
D. Stroke- can you believe that? My sweet newborn at risk for a stroke?

He said there is a chance of bleeding in the brain while on the ECMO which can lead to Cerebral Palsy or severe autistic behaviors.

I can't even begin to explain the feelings I have about this. She is perfect right now and everyone is telling me she could end up with a severe defect or not even make it at all. As much as I wish I could just keep her in here, I want this whole thing over with. It's sounds harsh but if she is going to die, I just want it to happen already. This is just torture. Waiting, hoping, praying when in reality, I have no control. So really, I just want it to be over with.

He gave us the "best case scenario" and the "worst case scenario".

Best case- she is born, adjusts just fine to the breathing tube, has surgery and recovers quickly. She will live a full, happy life without any problems and have a small scar on her abdomen.

Worst case- she doesn't make it.

Dr. Scaife told me to not be too polite in the hospital. He said that the decisions are ours to make. He gave me permission to be frank with the doctors and nurses about any questions I have. (As if I needed that?) :)

I really loved that though.  He wanted us to make sure we are in charge. We will decide how far treatment goes if it looks like she won't make it. Then he said "Well, we'll see ya this summer".

So that's it. I feel overwhelmed all over again. He mentioned that at 34 weeks babies organs don't have anymore room to grow so we could talk about being induced then. But at the same time, they want her as big as she can be. And.. 34 weeks is in 4 weeks..

Chris and I have talked about it and we just want this all over with. We want her to be born and in the NICU already. You could say we are getting impatient. Sometimes this feels like a nightmare that we can't wake up from. It just keeps going and going and going. Sometimes I just want to know whats going to happen. I'm tired of praying and tired of hoping. I just want to know the outcome.. now does that sound Satan's plan or what? :)

So I guess that's it for now. We meet with Dr. Gainer on Monday to talk about the birth plan and being induced! AHH! We are so close I can't even stand it! We are scared but excited.


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