Wednesday, May 13, 2015

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.

Monday, May 11, 2015


Today was one of those days. You know like when your kid swallows quarters? Oh you've never had that happen?

This is just for my journal purposes.. well actually maybe this might help someone out there.

I put Owen down for a nap at our usually time after lunch. Instead of sleeping he talked to himself or Optimus Prime for quite a while. I let him be because well, that meant I got "me time" (to fold laundry) and he wasn't asking to come out so I figured everything was good.

An hour later, he had gotten pretty quiet so I assumed he fell asleep. I started on the dishes and luckily heard him throwing up. I ran back to his room and started patting him on the back. You know.. helping him throw up? "It's okay buddy, just spit it out, we'll clean ya up when you're done".

He was crying and choking now. In retrospect this is all pretty funny now but please believe my palms were sweating and I was in tears. His huge eyes just looking at me in panic, begging for me to help him. At this point I was smacking him in the back trying to get whatever is lodged in his throat out. More throw up and.. two quarters. Quarters. Not dimes.. quarters. TWO. QUARTERS.

My emotions flew from terrified to livid. Why would he eat quarters?!
Here I am thinking I might lose the only living kid I have to choking on quarters? Who does that?

Even as a crawling baby he hardly ever put things in his mouth. He just wasn't one of those babies. Apparently that phase of life came at three years old.

I sat there for a second trying to understand it. Quarters. Seriously? I said "Owen I thought you were asleep? What happened?" He then, in tears, replied "Mom I just couldn't sleep because I ate quarters".

I was going to take a picture but I figured you would get the mental picture of throw up and quarters pretty easily in your own.

Needless to say we didn't get a nap in today. He took a bath and splashed all over the place, the floor, the mirror, the toilet, etc. The rug was soaking wet but not to worry, I just threw that in with his bedding. Some days are just hard. Terrifying, then funny and hard. And for some reason I feel completely emotionally exhausted. Kids are awesome. Truly. I'm ready for bed.

Saturday, May 9, 2015

Mothers Day 2015

Recently on my Facebook feed a lot of my friends are graduating with their bachelors degree and even some from nursing school. As I was scrolling through I kept thinking to myself how crazy time flies and how much they have accomplished since graduating high school. Then that obviously made me question what I have accomplished in the same time. Although I know I am no where near being a "fully accomplished woman", because I believe that doesn't happen in this lifetime, I feel very accomplished.

It made me think about where I have lived, what I have seen, what I have learned and where I am now. And since our fifth anniversary is coming up in August, I guess I feel like it would be a great time to write this all down.

 One of my friends from high school graduated from nursing school and when I saw the picture of her at graduation I couldn't stand how proud of her I was/am. That is a major accomplishment. I remember her talking about nursing school in high school and how that was a goal of hers. She should be proud of herself. I am.

Then for a few seconds I thought, "Well, I'm proud of myself, I have accomplished just as much or maybe more". I am just as proud of myself as I am of her.

This is young, innocent, had no idea what was coming Sarah. (pregnant w/ Owen)

Before we got pregnant with Conor, I was debating taking classes to start on my Bachelors. I was so bored at home with a two year old who was way too advanced which caused me to feel like he didn't need me. I was so frustrated and I felt as if I wasn't accomplishing anything. Like I was just wasting time being a "mom". I felt I needed to do more. I called my mother in law and asked her about it. She told me to pray about it but that motherhood shouldn't be taken lightly. That it is important. That Owen really did need me. When I hung up I was angry. She didn't give me the answer I wanted. No one was. Why did no one understand how bored I was? How unaccomplished I felt? How I can only cook and clean for so long..

Then we lost our Conor.

Losing him helped me realize just how vital being a mother is. Just how sacred it is. I am honored to be called a mom, a stay at home mom in fact. I am proud to hold that title. I don't feel ashamed or embarrassed to be listed as the "home maker". I feel accomplished.

This "job" I am working is way overlooked, under payed and has the worst hours but I would never trade. I would never give this up. I am just seeing how incredible, how amazing, how beautiful this whole thing is.

 I may not have a certificate stating that I have a college degree but I feel I have earned several " life degree's". The most important being, giving life. You learn so many things after giving birth, maybe even enough to qualify for a BA

This is all very specific but I think this could work for any of you mothers out there.
In the time friends have gotten BA degree's, I have had two babies and am currently creating one. I have raised one to be almost three,(I believe that in itself is an accomplishment). I have, not willingly, given one back to my Heavenly Father. And I have stressed, prayed and cried over whether we get to keep this one. I have learned how much time, effort, love, hard work, dedication and most of all sacrifice it takes to be a mom and wife, let alone a good one.

While I have never been to a college party I have "movie night" nightly with my boys.
While I have never studied all night long for a test I have been up all night nursing a baby.
While I have never cried over saying goodbye to loved roommates I have said goodbye to my baby boy.

You get the picture? I think this list could go on and on.

My point is not that being a mom is harder than getting a degree (although..).
My point is I am doing something important. You are doing something important. Something needed. Something that should be cherished.
And I am truly grateful for this understanding now. I am in no way, shape or form saying that being a mom is easy because it is the hardest thing I have ever experienced. It has caused me more devastation and heartache than I've ever known but that is because I have known true joy and love.

I am saying that I love it. That I feel like I am accomplishing something. Even when I just play trains all day.

 I love my boys and little girl. I love that have been able to experience true sorrow and true joy. I feel blessed to be able to be a mother. I am grateful Heavenly Father has trusted me with Owen. And he had trusted me enough with Conor. He knew we could handle that. He knew we can handle Charlotte and whatever comes with her. Although this last year has been just really stinking hard, I have learned a lot about motherhood and I am grateful for that.

Happy Mothers Day!

Side note-
 We meet with the Pediatric Surgeon on Tuesday at 11:30.. so basically if you have a spare prayer, please send them our way. He will tell us what the surgery is like, when they will do it, how likely she is of surviving it and so on. So it could be another heart break day or a great one.