Thursday, May 11, 2017

Our Fetal Surgery Saga (Part 1)

I am going to start by saying if your a mom looking for a story of someone who actually had fetal surgery this is not it. This however a story about how we got to that decision.

Now that I have gotten that out of the way lets get to the story. I realize some of you have no idea what I am even referring to and that is ok; if you bear with me I promise I will explain it all. I left off last time with that agonizing 5 day wait of waiting for some clarity. Finally the day came when we got to meet with our MFM (maternal fetal medicine) doctor, or high risk pregnancy doctor. My wheels had been spinning the last five days trying to figure out all the possible things I would hear today. Honestly I still had that hope that they would tell me it was a mistake the tech took the images wrong and everything was just fine, I mean who wouldn't hold on to that dream?

The doctor took us back and began scanning. It didn't take but about 2 minutes for her to stop and say, "see that? There it is." She was referencing the "bubble" along his spine. This "bubble" is really the area on his back where the spine didn't close up all the way and where the contents of his spinal column stick out and they call it his "bubble" because it looks just like a bubble on his back on ultrasound. There it was you guys, it was confirmed little K did indeed have spina bifida. My heart sank, that last little bit of hope I held onto was gone. I was crushed because now my mind went from maybe it's nothing severe to what does this really mean now? Will he be ok? What complications can I expect? What was his lesion level? Will he be able to walk? The questions were endless and honestly I didn't know what to think or where to start.

One of the first questions our MFM asked was what we thought about fetal surgery. Fetal what? I had no clue what she was talking about. In it's most basic explanation it is a surgery where they open me up to get access to the fetus and close the opening in the babies back then sew me back up and continue with the pregnancy. It is a very risky procedure with the biggest risk being preterm birth. My gut reaction was NO are you kidding me? cut me open and perform high risk surgery on my baby? Oh and did I mention after surgery you are basically on permanent bed rest? Oh and the surgery has to be done by like 26 weeks so you have 3 MONTHS of bed rest? Yeah, there was no way I could do it. I had a 1.5 year old at home to worry about. I had made my decision no fetal surgery just no.

So your thinking that story is pretty boring right? Well it would be if that was the end, but like most stories there is always a twist.

After the initial appointment my husband and I went home and began (like any good student would) reading up on fetal surgery. We read peoples blogs, we read journal articles, we read case studies I mean come on we are both dentists we know how to do our research of medical studies. Yes I read the numbers you know those fancy statistic type (sample sizes, standard deviations, confidence intervals and all). The more we read the more the research pointed to fetal surgery as being a great thing. All the studies and results were so promising! I mean if we really wanted to do everything for our child to give him the best quality of life we decided we had to at least look into the option of fetal surgery. But by this time I was almost 23 weeks pregnant and the range for fetal surgery is very small it has to be done before 26 weeks. So we called the MFM and told her we wanted to investigate Fetal surgery. I needed to get an amniocentesis done to be even considered so that was our first step in our journey. I got the amnio done and then the real journey began...yup I am just getting started.

Because we were stationed in Biloxi, MS at the time there were no hospitals in our area that routinely performed fetal surgery. There was one hospital that had done a handful of cases in New Orleans, but I didn't feel comfortable with those numbers. I wanted to go to a hospital that has a proven track record. There are 4 hospitals that have been doing this surgery since the very inception of the idea, these 4 hospitals where the ones that have been doing these surgeries since the MOMS trial began.

*In case your really interested in the MOMS trial study here is a little more information MOMS*

I mean have a medical background I knew the odds were going to be better if I went to a place with a proven track record. I will note that many more hospitals now are doing fetal surgery and in much greater volumes so I do believe the options will only continue to grow, which is amazing! But anyway at the time this is how I felt and that is what my gut was telling me was right. Being active duty military at the time I was so fortunate enough that they were willing to basically give me free pick of where I wanted to be evaluated at since there wasn't really an option close by. In the end I decided on Children's Hospital of Philadelphia because after reading all the research they seemed to really be one of the pioneers of this surgery and I wanted the best of the best so that is where I wanted to be.

Now the real adventure begins!
To Be Continued...

Tuesday, May 2, 2017

Stir Fry

So this post has been sitting unfinished in my draft section for like 2 weeks now. I really had the best intentions of finishing it many times. Anyway that is life with kids right? When I first started posting pictures of my meals on social media this was probably the recipe that got the most interest. I don't know what it is but people just really went crazy of my beef stir fry pictures.
I never was able to give people the recipe (until now) though because honestly there was no recipe. I have been making stir fry for as long as I can remember. It was one of the first things I had my dad really teach me how to make. My dad makes the best stir fry, and I request it pretty much every time I come home. So when I started tinkering with actually creating a recipe for the stir fry I had a hard time getting it right because honestly after making something by eyeballing measurements for so long it was hard to get it right. I won't say this is picture perfect ideal, but it is a really good base recipe. The reason I say that is because everyone has their preference on how they like their sauce (spicy, more garlic, more ginger, no garlic, less ginger, no spice, thin/thick, sweet, etc) So try it and then adjust to your liking.

This is how I do a beef stir fry, but it works with pretty much any meat you choose. The key is to slice the meat really thinly. If you have frozen meat it actually is easier to cut it super thin when the meat hasn't completely defrosted/slightly frozen still.
 Then you will marinate the beef. Heat a skillet/wok up super hot with a little oil. You want it hot to cook it fast and get a good sear on the meat. If your like me you may need to cook the meat in batches, as I have a tendency to use a large cut so we can have leftovers for lunch the next few days. Do not over crowd the pan!
 See that nice browned color?
 Remove the meat and cook the vegetables. Cook to desired tenderness.
 Add meat and the sauce in and let cook a few more minutes until thickened. Serve!

I love to make stir fry because it's really quick and simple. It's also a great way to pack in a lot of vegetables in one meal. I mean look at all that color!


While the meat is marinating prepare the Sauce

Assemble the Stir Fry
*Note I don't say what vegetables to add because there are just too many great combinations and the basic way to make it is pretty much the same.
1. Heat up a skillet/wok with a little oil. You need to get the pan really hot.
2. Add meat and let cook until brown
3. Remove meat from pan (repeat if doing in batches)
4. Heat a little more oil and cook vegetables (I used a frozen stir fry mix here so it took about 10 minutes to cook vegetables through) If you use fresh vegetables it will not take as long.
*note I like my vegetables more tender so I often add a little water and cover the pan to steam the vegetables, but if you like very crisp vegetables you can skip that step
5. Add meat back in and all the sauce
6. Turn the heat down and let sit on the heat for just a couple minutes to let the sauce thicken.
7. Serve and enjoy

Thursday, April 27, 2017

The Next 5 Days

If you remember from my last post I said we had a 5 day wait to get any "definitive" diagnosis. I was told "there is evidence of" "it appears as" "there are signs of" but no "Your baby has XYZ". Those 5 days were quite possibly the longest most agonizing days I have ever experienced. It was like boarding that plane [read the poem Welcome to Holland if you don't get the reference] and waiting to take off not knowing if the engine would hold up. So what does one do when they have 5 days to wait?
The answer I am going to tell is the answer that almost every parent with a child of Spina Bifida will tell you NOT to do...Google. I googled like a mad woman. Honestly when I heard Spina bifida I really didn't even know what that meant. Sure I had heard of it on maybe a slide on neural tube defects back in dental school, but lets be honest I didn't really know anything about it other than that. When I said I googled, I mean I googled the poop out of that "possible" diagnosis. (If any of my SB moms are reading this I hope you appreciate this little pun) Again being honest I am not sure if it helped or hindered my thoughts on the diagnosis. Yes I got educated about what SB was and the possible complications and possible problems we were going to face, but I also got a lot more scared by reading all these worst case scenarios and grim prognosis. Knowing what I know now about SB is that it's near IMPOSSIBLE to say anything definitively about what aspects of your child's life will be affected. It truly is a "snowflake" condition and no two cases are a like. What I will also say is that I know no matter what I write here or say to an expecting mom they will hit the internet hard after hearing this diagnosis; I mean it's human nature to want to know and that's just the day in age we live in that the internet will be the go to for that information.
Honestly looking back now (almost 1.5 years later) I can barely remember those 5 days. I was so consumed with fear, emotion and sadness that it was almost like an out of body experience. You want to know what was even harder than coming to terms with that my baby was going to have some sort of birth defect (no matter how small or severe) the thing that was the hardest for me was trying to come to terms with the fact of having to say it out loud not just with my husband but to my family and eventually friends. I just remember crying or tearing up every time I spoke the words out loud. It had turned this thing [pregnancy] that was so fun and exciting into something that I just cried over...a lot. I felt guilty that I wasn't enjoying this pregnancy like I had my first. Don't worry this would eventually change and I would learn to accept the fact, but that's jumping ahead many, many weeks. Those 5 days were hard, but what I can say looking back is that I survived. I learned, I grew and I survived. For any mom that may read this just know you will survive it too! It may not seem like it because honestly I didn't know how I would survive it all, but you will and you will be much stronger because you did.

Thursday, April 20, 2017

Those Three Little Words

I have been thinking for a long time how or even if I wanted to post about my journey as a mom of a child with Spina Bifida. I go back and forth on wanting to keep it private and wanting to share it with the world. Ultimately I decided to share (at least parts) of my journey for a couple reasons. 1) I remember when I started this journey scouring the internet and reading blogs of moms with kids of Spina Bifida (which I will often abbreviate SB); hoping to find some sort of clarity. I hope that my posts can help even one mom/dad in some way. 2) I know a lot of people are just plain curious about what it's like and I want to try and give them a little look into not only the good, but the bad/ugly as well. Let me be honest it isn't all sunshine and roses, but is it ever with kids really?

Lets start from the very beginning (over a year and a half ago now!) to the day we found out little K had SB. I can't believe it was really that long ago now, but I still remember the day. I will call this the day we boarded the airplane for Holland. If you haven't read the poem yet I have linked it for you. Unlike the poem we knew that we were going to Holland very early on it was not a surprise at his birth. Not to say it wasn't a surprise when we found out, but we did have months to think it over and plan as much as we could. So lets talk about "The Day".

It was just a few days prior I had had my 20 week ultrasound/anatomy scan.
* As a note in the military you typically only get 2 ultrasounds when your pregnant, 1 at 8 weeks to date the pregnancy and 1 at 20 weeks to do a full anatomy scan to check for any potential issues. *
I was working in clinic just as I would on any other day when I got that fateful call. The OBGYN called and said you need to come in ASAP so we can talk. Then came the three little words NO expecting mother wants to hear "There's some concerns." Yeah not the 3 words you typically think of when I said those 3 little words right? I had about 2 hours left in clinic until I could make it over to see her. Those 2 hours were agonizing, I went from best case scenario to worst in my head. Did they just miss something in my scan and need to re do it? Is my baby not going to make it? I was literally shaking I was so nervous, I couldn't think straight. Honestly I felt sorry for my patients that morning as my head was only half in the game, if that.

As I sat in the waiting room I felt numb. My brain was racing a hundred miles a minute yet I was frozen all at the same time. As I walked back to the room to talk with the midwife (as I found out later the high risk OB was out of town) I felt like time had stopped for just a minute. I sat down and she looked me in the face and didn't waste anytime getting to it. I don't remember the exact words as I think I blacked out a little, but it went something like "We have some "concerns" there is evidence that your baby has club feet, the ventricles are enlarged, we see the lemon sign and there is evidence of spina bifida." You guys it was like glass shattering with every problem she mentioned...your baby has club foot *glass breaking*, the ventricles are enlarged *glass breaking*, we see the lemon sign *glass breaking* and the biggest one of all we see evidence of spina bifida *whole room of glass shattering*.
Honestly I don't know what my face look liked all I remember is just breaking down and bawling, just the biggest ugly cry you can imagine. I honestly didn't even know what half those words meant, but all I knew is that it can't be good. I am thankful that they sent me home for the day to pull myself together because I don't know how I could have gone back to work. The next few days were some of the toughest days I can remember. I couldn't get any official diagnosis until I met with the high risk OB and she was out of town until the following week (like 5 days) yes FIVE whole days with no official answers to any of these questions.

So this was the start to it all. We had to get off our plane to Italy and change flights to Holland. We were scared, confused and honestly really sad.
Stay tuned as our journey continues...

Welcome to Holland Poem

I am posting this poem as I will reference it in some up coming posts. Although it doesn't match my experience exactly it has some really good metaphors that I can relate too.


Emily Perl Kingsley.
c1987 by Emily Perl Kingsley. All rights reserved

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.