Saturday, July 13, 2013

Bittersweet..

I'm on a roll with posting once a month, hopefully when things get settled I'll be able to more frequently update, but moving on..

Today was kind of a crazy day! Just a little back-story in a nutshell.. We decided to take a family vacation up to Utah at the end of June/beginning of July.  While we were planning that, Sky found out that he had two week-long business trips a week after we'd be getting back to Phoenix.  Since it's about 115 degrees in Phoenix right now among other things (more on that later), we figured the kids and I might as well stay up with family since he would be gone anyway.

The biggest part of the nutshell back-story: I'm pregnant! Yay! Just another reason why we decided to stay up here since I've been the most sick during this pregnancy than I have ever been (although I can't complain too much, I know many have it a lot worse than me). At least this way I could have a little help and not be lonely ;)


I knew that being up here would overlap with my regular pregnancy check-ups, so based on that and the fact that I really do not care for my doctor down there at all, I scheduled an appointment with my doctor that delivered both Selma and Callen. Oh and it wasn't at all because they would do an ultrasound so that we could possibly find out the gender of the baby up here, not at all ;)

This is where it gets a little crazy.

So yesterday, I go to my doctor's appointment with my mom and the kiddos in tow.  It made me miss being up here even more!  I just love the familiarity and trust that I have with my doctor and his office!  After all the routine stuff, I got settled in for the little ultrasound and he said that with how far along I am (almost 16 weeks, due December 28th) we could probably figure out the gender, yippee!

He starts scanning and everything is looking good, except when he goes to find the gender.  Since I've had two kids and had an ultrasound at just about every visit with them, I've looked at a few and I could see that something looked different, although I didn't know what it was.  All I know is that we couldn't really see the groin area and it looked as if there was some sort of mass there.

My doctor kept scanning but you could tell that he was concerned.  He said "It looks like there might be some sort of abnormality here, I'm going to see if we can get you into a perinatologist either today or tomorrow."  Yikes.  Not what any expectant mom wants to hear.  Oddly enough though, I really felt pretty calm.  We asked what he thought it could be and he guessed a couple possibilities including a hemangioma growth on the umbilical cord or gastroschisis.  He didn't want to go any further into detail and was so great about it but walked us right back to the nurses and talked to them about scheduling me with a perinatologist.

My brain at this point was swirling with different possibilities.  Let me preface this with the night before:  I have been so nervous with this pregnancy, I think maybe because I only had one quick ultrasound and then haven't felt the baby much, if at all.  Even though my head was spinning a little bit, I still felt so calm because I was just so happy that my baby was alive and that other than that, things looked okay.  I also have felt prepared for something like this for a long time and have had a feeling that something like this might happen at some point in my life.  I'm so grateful to my Heavenly Father for preparing me and giving me the peace and strength to hold it together.


They were able to get me in the next day (today) so I had all yesterday and last night to think of different possibilities and Google them (not the smartest idea). I know Sky was doing the same thing down in Phoenix, just stressing and worrying and wishing we could be together figuring this stuff out.  As I was lying in bed trying to fall asleep, I just couldn't escape the thoughts and fear that if something is wrong, it's my fault.  I must have done something, like not taking my prenatal vitamins very well due to feeling so sick, drinking
Diet Coke, staying up too late.  Anything and everything pushed further into my guilt.  That was a bummer night.

Today I was anxious all morning waiting for the appointment. Luckily Sky's mom took us to Despicable Me 2 and then took the kids after so that my mom and I could go to the perinatologist with no added distractions, so nice.  We got to the hospital and the staff there was so nice and friendly.  I still felt so calm and knew that no matter what happened it would all be okay.

Once I had filled out all of the paper work, they took me back to one of their nice ultrasound rooms and we waited for the ultrasound technician.  Our tech was Lindsay and she was 29 weeks pregnant with her second so she had the cute little belly.  She was so nice and professional, scanning everything and going over every little part.  We had a lot of questions, including what the gender was.  I hadn't really had an inkling as to what it would be the whole pregnancy until the past few days when I kept calling it a "he" randomly, so I was pretty sure that's what it would be.


Boy was I wrong, IT’S A GIRL!!  We are so excited to break out the girl stuff again! Selma is especially excited, she had been wanting a girl so bad she has even talked about it in her prayers :) I was really happy that I could tell her that she's getting her baby sister.

All throughout this, you could still see the elephant in the room, the mass around her abdomen area.  Lindsay finished up her scan and said that she doesn't really feel comfortable diagnosing and will leave that to the perinatologist but the mass did look like bowel to her.  Even though I felt like I was prepared to hear that, it was still a little tough to hear.  My mom and I took some deep breaths and waited for the perinatologist to come in and meet with us.


I had so many questions and concerns, it was hard not to spew them all over the doctor the moment she came in.  I held my tongue though and let her introduce herself.  My mind was so all over the place that I honestly couldn't remember her name and still can't (I looked it up, Dr. Gesteland).  She was amazing! So professional but very, very caring.  She scanned me while she spoke and explained that from reviewing all of the scans from both herself and the ultrasound tech that the baby does indeed have gastroschisis.  This means that when the baby was developing, the abdominal wall by where the umbilical cord is attached didn't fully close so some of the baby's small intestine is basically floating outside the baby in the amniotic fluid.

As you can probably imagine, we had A LOT of questions and concerns with that diagnosis.  As an expectant mom, I don't think you could ever fully be prepared for something like that. You just have this picture in your mind of what life with a new baby is like and getting a diagnosis like that kinda throws you for a loop. Will she be okay? Will it change her life? Did I do something? After spending almost 2 hours in the office with both Lindsay, the ultrasound tech, and Dr. Gesteland, we left feeling like we had almost all of our questions that we had at the time answered, which was very comforting.

Sky called right after and we were able to talk about it and what was going to happen.  It's been so hard to go through this without Sky here, I'm sure even harder for him since he hasn't been able to be to any of the appointments and has heard everything all second hand.  The rest of the night was spent poring over articles, groups, researching doctors, hospitals, NICUs, anything else you could think of that would relate to gastroschisis.. I went to sleep feeling very overwhelmed and missing my hubby even more.

Today is a new day.  While we're still nervous and all of the unknown is kinda scary, if there was a birth defect that I could choose, it would probably be this one. Why?  Because it's treatable, fixable, and shouldn't really affect baby girl's life once she's older.  So what does this mean?  Well, the word has gotten out a little bit and there are lots of questions, a lot of the same ones we had.  I thought I'd share some of those and the answers that we got from our perinatologist to explain.

How will this affect the pregnancy?
Luckily, unless something else comes up, I shouldn't have to go on bed-rest.  The only thing that changes with the pregnancy is that I will be monitored a lot more closely.  I'll be seeing a perinatologist and getting frequent ultrasounds as well as non-stress tests as the pregnancy progresses.  Can't complain too much about any of those things!

Does this mean you'll have a c-section?
Most likely no, which was very surprising to all of us.  Unless the baby starts having issues and we need an emergency c-section or the doctors decide later on, it shouldn't have to be a c-section.  I'm just happy to do whatever is best for the baby, so if c-section is required, I'm all the way on board!

What happens after the baby is born?
With gastroschisis, they tend to induce right around 37-38 weeks, or earlier if they see the bowel starting to dilate or if something isn't going right.  I guess with this condition, the risk for still-birth is increased so that is one of the reasons for early induction, as well as keeping an eye on the bowel and making sure the amniotic fluid isn't hurting it, etc.  Gastroschisis babies are almost always induced because they need a team ready for the baby: my doctor plus a pediatric surgeon and their nurses.

What do they do to fix the gastroschisis?
Right after the baby is delivered, they'll whisk her away to assess how large the opening is, if any bowel is damaged and needs to be repaired, and whether or not they'll be able to perform surgery immediately or not.  If they can, they'll repair the opening then and there.  If not, they use what's called a silo in the the NICU.  The silo uses gravity to allow the bowel to slowly return into the baby's body after which they will close the opening.  Baby Girl then has to stay in the NICU on average about 4 weeks until the bowels begin working properly and she starts eating on her own.

How does something like this happen?
I was so grateful that Dr. Gesteland went over with me that it's nothing that I could have changed.  Basically, it's just a random thing that happens and can be a gene that's carried that manifests itself at some point early in the pregnancy.  Apparently it's most common in late teen/early 20's caucasian moms, but obviously can happen later too (I'll be 27 in a few months).

How does this affect the baby?
Luckily, in most cases once the stint in the NICU is over, baby should be free and clear to lead a normal life. There might be some minor set backs here and there but overall, gastroschisis has a pretty good outcome which has brought us a lot of comfort as well. With any birth defect, the chances of another is always higher, but as of right now everything else is looking great.  They'll continue to monitor that throughout the pregnancy.

In a nutshell...
Everything with gastroschisis is kind of up in the air until the pregnancy is closer to full term and the tests show the doctors more about the bowel and Baby Girl.  When she's born around 37-38 weeks, they will assess things then and decide further, but nothing can really be totally planned out with this defect.  I think that "going with the flow" is something that I'm going to have to learn from this :)  After everything is assessed and they decide the path they are going to take to correct the gastroschisis, Baby Girl will be in the NICU for about 4 weeks and hopefully home and well after that!

It's still a lot to take in and I know things won't be easy, especially that first little bit after she's born.  Reading on the internet that sometimes it's a week before you get to hold you baby was a little heartbreaking.  All things aside though, I am so incredibly grateful for Baby Girl (and our two other sweet kids)!  We are so happy that everything else is looking okay and that we'll have her with us in just a few short months.  And I can't begin to say how blessed we feel to live in this time with the advances in modern medicine, so so grateful!

Please feel free to talk about it with us or ask questions if you want, we don't want anybody to feel awkward talking with us about her or the gastroschisis.  It's part of our lives and we're okay to share it! :)

Here's just a little clip that they took of Baby Girl moving around a little bit, love her so much already!

video

5 comments:

  1. Steph!! We will be praying for you and for baby girl!! You always have such a great attitude. Thanks for sharing.

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  2. Steph, you're amazing. Congrats on your baby girl! I am thinking of you and we will keep you and your family in our prayers.

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  3. You are amazing! Thanks for sharing this! You answered everything I wondered about. I'm so glad you feel peace about it, and are trusting in the Lord. We will be praying for you and sweet baby girl

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  4. Steph I'm so glad I read this post. What a heart breaking thing to go through as parents. You have such a wonderful attitude. I will be thinking about you and praying for you!

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