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.

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.

WELCOME TO HOLLAND

by
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.

Carrot Soup

It only seems fitting that I post a carrot recipe on Easter right? I almost hate to call this a recipe as it's so simple and easy to do. I love soup, there is just something so comforting about a bowl of hot soup. But what I don't love is canned soup. It is always too salty for my taste, and the stuff inside is not fresh (duh it comes from a can). When I started making soup at home I just fell in love with the freshness and the simplicity of the flavors you get from using fresh ingredients. I found when I used fresh ingredients I didn't have to add a ton of salt and extra flavors to make it taste great.

Simply cut up some onions and carrots. Sauté the onions in a mixture of butter and olive oil. Then add the carrots and spices.

Then add chicken stock and simmer until very tender.

Puree with an immersion blender (or in batches in a regular blender if you don't have an immersion blender). Add milk and your done. See wasn't that simple? And you don't need a bunch of fancy ingredients. Simple clean and tasty!

I am trying a new way of posting the recipes via these cards what do you think? I am thinking I am liking it, but I am not sure the font I chose was right...thoughts?

Marinara Sauce

I love making my own spaghetti sauces. I tend to find the jarred sauces to salty and tomato pasty. Plus I love controlling the ingredients I put in my food and then I get to add whatever I feel like on that particular day. Control freak much? Yup I will admit it. But if you have your own favorite jarred sauce by all means save yourself the time when your in a rush, no judgement here!
I make my sauce in a 5 quart sauce pan I got for my birthday (Thanks Dad!).

Start by chopping and sautéing some onion and mushrooms

Then add an entire bag of spinach and give it a minute wilt.

Add in your spices: sugar, pepper, basil, oregano, garlic (or garlic powder), balsamic vinegar. Then add Tomatoes, chicken stock, and 2 shredded chicken breasts if using and simmer away.

Again you can feel free to leave out any ingredients you don't like or add in ingredients you like. I often make it with bell peppers and no spinach, using ground turkey instead of chicken. Go crazy and let me know your favorite way to make it!

Recipe

Marinara Sauce

1-tbls olive oil

1 large onion diced

1 package (8oz) criminal (baby portabella) mushrooms sliced

1-10oz package spinach

1 tbls balsamic vinegar

1 tsp sugar

1/2 tsp pepper (or 1/4 if you are sensitive to spice)

1 tsp dried oregano

1 tsp dried basil

1 tsp garlic powder (if you have fresh garlic you can substitute 2 cloves minced I just didn't have it on hand when I made this particular batch)

1-14.5 oz can diced tomatoes

1-15 oz can tomato sauce

1/2 cup chicken stock

2 chicken breasts boiled and shredded

1. Add olive oil to large sauce pan (you can use a pot if you don't own a sauce pan)

2. Add onion and Sauté for a few minutes

3. Add mushrooms and continue to sauté until most of the moisture has evaporated (you want to really cook the moisture out)

4. Add spinach and cook just until it wilts down

5. Add in balsamic vinegar, sugar and all the spices and continue to sauté for a couple minutes, you want the vinegar to caramelize a little on the vegetables

6. Add in tomatoes and chicken stock and chicken if using

7. Let is simmer. You can use it right away if your pressed for time but if you have the time to let it simmer on low for at least 30 minutes it will just get better.

8. Enjoy! 

Spaghetti Squash Bake

Don't get me wrong this girl LOVES her carbs (as I have said before a time or two or a million times). Some days though just call for a low carb kind of meal. There is no better substitute for me than spaghetti squash. Make no mistake it is NOT the same as eating a huge bowl of homemade pasta, but it is a great way to mix things up and I love how versatile it is. One of my all time favorite ways to eat it is to make it into a layered casserole dish with flavors that are reminiscent of lasagna. I almost called this recipe spaghetti squash lasagna bake, but it wasn't quite close enough for me to call it that. I thought it may be a little misleading. But you will see similar ingredients to a lasagna.

Bake the spaghetti squash (this is my method but you can use any method that works for you)
Micrwave the whole squash for 6 minutes, then cut the ends off and cut in half and scoop out seeds. Bake squash cut sides up.

Make sauce while the squash cooks (or use a jar of your favorite Marinara for a time saver). I did add 2 shredded chicken breasts to my sauce to add a little more protein.

Layer the spaghetti squash bake.

 

Bake in the oven then let it sit for at least 15 minutes prior to serving.

Recipe

Spaghetti Squash Bake

1-Spaqghetti squash

1 recipe Marinara (will be in another post) or 1-24 oz jar of marinara

1-15 oz container part skim ricotta

1 cup Italian shredded cheese blend (divided)

Preheat oven to 400 degrees F

1. Microwave spaghetti squash for 6 minutes

2. Cut off the ends and cut down the middle. Scoop out the seeds

3. Drizzle with olive oil and sprinkle with a little salt and pepper

4. Cook squash cut side up for 30 minutes

5. Let cool a little

6. Layer in a 9x13 baking dish

Sauce-->1/2 of the spaghetti squash-->whole tube of ricotta-->1/2 cup cheese blend-->sauce-->1/2 spaghetti squash-->remaining sauce-->1/2 cup cheese

7. Bake uncovered at 350 degrees F for 45 minutes

8. Let it stand for at least 15 minutes

9. Enjoy!