A firm place

Friday, June 7, 2013

Being a special needs mom

The other morning I was up early before the rest, which unfortunately doesn't happen as often as I wish, and a fiesty little red head, who is growing up way to fast, woke up talking a million miles a minute. Out of the blue she said, "Mama, when I grow up I am not going to have a baby."

I asked her why not, and told her that I knew she'd make a great mommy one day (very, very far into the future!)

And then she said as if her five year old heart had held this thought captive for a while, "I don't want to have a baby because it might have spina bifida."

And in that moment my five year old expressed my deepest unspoken fear.

Without a moment to think I began to question, "So that might mean if you had a baby with Spina Bifida he or she might have to have some therapy, right? You love Mrs. Cindy, Mrs. Jillian and Mrs. Melanie. That wouldn't be so bad to have therapy would it?"

She smiled and said, "No."

Our Super PT removing Eli's cast in our kitchen! Above and beyond the call of duty!

Then I said, "And it might mean that your baby would have to wear afo's or braces, use a walker or wheelchair. You might have to go see Mr. Maurice a lot to get fitted for new Afo's. That's not too hard is it?"

And again she said, "No."

The braces so far...

Eli is doing super with his walker. He is getting forearm crutches tomorrow.

And it would mean that you would have to have more doctor appointments at the big hospital. You have been to several of Eli's and they weren't so bad either, were they? And she smiled and reminded me that she liked the stickers the nurses give them when we leave.

And then I reminded her how much we would miss everyday without a little brother! Yes, there have been some challenges, but he makes up for it a thousand times over with his joy and sweetness. And she laughed and agreed.

The one and only time all 3 kids will match...says daddy! Such a happy boy!

They fight over who gets to sit by Eli!

And then I am pretty sure both of our hearts felt better.

I have often thought how I would have never willingly chosen these challenges for our family, but I can't really imagine life being any sweeter. God has been faithful!

Saturday, April 20, 2013

2 years Post Fetal Surgery

If you are new to my blog, then you may not know that two years ago, 2011, was the year that about killed us...quite literally! In March of 2011, we found out at 16 weeks that our fourth baby had spina bifida. Shocked and devastated...hardly seem like strong enough words to describe those early days following the diagnosis. Even more devastating since five years prior we'd had a seemingly similar horrible day when we learned that our first sweet baby boy had a fatal, rare kidney problem. We'd been told that the chances of something like that happening again would be the same odds as getting struck by lightening twice on the same day.

Spina bifida was something I knew nothing about except that I was super religious in taking my prenatal vitamins. I really only knew that they helped to prevent neural tube defects and for someone who had faced such a hard and difficult loss I couldn't for the life of me understand why any woman wouldn't take a silly pill if it would prevent a birth defect!!!!! I did...for five years and I had a baby with spina bifida. Go figure!!

After finding out that our baby had spina bifida it was mentioned to us that there may be the option of fetal surgery. It seemed like such a long shot. At the time there were three hospitals in the US who did the surgery. We would have to travel. We would have to qualify (amnio, ultrasounds, medical files, etc.). It would have to be done in a few short week(from 20-25 weeks). It was super, mega, expensive and at that time insurances were just beginning to cover some cases. It would mean I would be on bed rest for the remainder of the pregnancy. It all seemed impossible and overwhelming.

Two Days before Surgery! My biggest worry was how this all would effect our girls!

Kevin made the first call to Vanderbilt and began to gather information for us. The ball got rolling and we prayed. We prayed for wisdom and peace. We prayed that God would open and close doors and that we'd keep walking through them as He opened them. The weeks went quick and to make a long story short, on April 19, 2011, little, teeny, tiny 1lb 14 oz. Eli Matthew and his scared to death mommy went into surgery together.

I can't believe I am posting this one! It was not a pretty day for me!

Honestly, I have never been more scared in my life. On the morning of surgery, I remember being anxious and really tired. I hadn't slept well in a while. After all the consents were signed I requested something to help me relax and that is about all I remember, except laughing as they put the epidural in (those were some good meds)! I was completely out for surgery and it lasted about four hours.

The surgery team...beginning! We were blessed to have this unique look into this day via the nurse coordinator taking pictures. If you are squeemish...you may want to stop reading here!

Opening mama!

That my friends is my pregnant 22 week uterus outside of my stomach and flipped over.

Opening the uterus! Can you believe this works? So thankful for the mamy moms who participated in the MOMS Trial and pathed the way and the brave doctors who pioneered it!

They opened me up and took my uterus out and flipped it. Found Eli's back via ultrasound and opened my uterus. The neurosurgeon repaired Eli's open back and then they put him back in me and closed me back up. Sounds pretty simple huh! It is a very delicate surgery and there have been babies that haven't made it through. I realize that so much more two years later how blessed we were.

Eli's very 1st Neurosurgeon watching and waiting for his turn!

I was under a very deep anesthesia...enough for me and Eli yet ,they still gave him local anesthesia too! His first shot!
Just for a moment ...that must tell you that unborn babies MUST feel pain!!!!

And this is his precious little opened spine. The source of many tears and concern and the reason for all of this!

Closing Eli's back and then they closed me!
So thankful for this special team of doctors and nurses at Vanderbilt!

As I was waking up I remember being dazed and confused and Kev kept telling me that all went well and that Eli's little heart remained stable and strong through the whole thing. Recovery was a rough ride, but everyday got a little better.

Feeling a little crazy. Kevin said I was saying that it had been three days since I'd been able to eat.

Clearly this was the exciting moment of the day!

The two best vistors ever. So thankful that they got to be with us in Nashville!

First airplane ride home almost two weeks later!

Mama in the wheelchair. Truely everyone should have to use one for an extended season and it will foster a new level of gratefulness and compassion for those that use them daily!

Two years post surgery I have a beautiful, smart and healthy little boy. I was so thankful when he was born at 34 weeks, that his little back was closed with just a small scar on his lower back. Fetal surgery does not take away spina bifida, but I feel like it benefited our little boy in many ways.

This was Eli's back on the day that he was born.

My first time holding Eli in the NICU!

None of this would have been possible without the best husband and daddy around who did more than his load that spring and summer!

I am so thankful to all who were there for us during this crazy time in our lives. I still remember so many little acts of kindness and care that carried us through some long days. So, two years past and I am so thankful that we did it, that God carried us through and that we have an awesome little boy that fills our hearts with so much joy every single day!!!

If you want to read all the details...our spina bifda journey begins in March 2011 in the archives. :)

Monday, April 1, 2013

Our Disney Trip Catch Up

We left for Disney World bright and early on December 26th. A sweet and very giving family in our church invited us to use their timeshare week in Orlando, since they were unable to use it, and we just couldn't turn that down. So even though Disney wasn't in our 2012 plans, we saved and decided to make it happen.

I must say that the thought of leaving my house full of Christmas décor and Christmas disaster was hard for me. I like to clean it all up and pack it away in the days to follow Christmas. I had to keep telling myself that it was okay, and it would all be there waiting for me when we got home. You may not understand this worry unless you are a bit type A, but for me it made me feel stressed. My sweet husband knows this and promised we would get it all done! He helped and it wasn't as bad as I thought. Letting go is good!

Back to Disney...I must just say that Eli had a bad ear infection and began Augmentin right before Christmas. It killed his stomach. I mean killed it!! I mean he had diarrhea for all 14 days that he had to take it and a few afterwards. I don't just mean a little, I mean explosive, everywhere, oh my goodness, what do I do, kind of bad diapers. I just share that little bit of unwanted information because it was a big part of our trip!!

Oh yea, he threw up in the car on the way and we had to wash and take the car seat apart before we could go to Target to get more supplies. You know more diapers, Destin, Pedialyte, probiotics, yogurt, and anything else he might eat or drink.

The next morning we headed to the Magic Kingdom. We were prepared. He was double diapered, creamed like there was no tomorrow, and we had extra, extra changes of clothes. When I say that I saw each bathroom at Disney, I mean, I.SAW.THEM. I changed him every hour or so and each time it was such a process. I know some moms behind me wondered why it took me 15 minutes to change my child...if they only knew. Thankfully, we knew it was just his meds and not him just being sick.

That continued for the duration of our trip. We only had one terrible mess when Kevin got completely pooped on while we were riding the train. I offered to buy him a goofy shirt, but he didn't take me up on the offer and resorted to wearing a jacket.

Other than Eli not feeling well, we had such a wonderful time. My girls were in heaven and Disney did not disappoint on the Christmas Magic. The snow falling on main street while Christmas music played each evening was my favorite.

We waited over two hours for Eliza to meet Tink and her sister, Periwinkle. She was star struck for sure.

Ella got to hold Ariel's hand and parade around the restaurantt at our character meal and she couldn't stop gushing. She has told us that she wants her hair to be redder so it will be more like Ariel's.

We pushed it hard and did LONG days. The parks were PACKED...like at capacity packed, yet we still had a great time. We fast passed our way through the parks and did everything we wanted.

We made memories to last forever...at least I have a lot of pictures to prove it!

Day One...here we go!

I loved all the Christmas decorations.

We questioned bringing all the strollers, but we were so thankful we did.

It was COLD in Florida!

Eli loved it all, despite not feeling well.

He caught some cat naps here and there. What a trooper!

Five and three was a great age for meeting the characters.
Eli liked them as long as they didn't touch him!

The Christmas parade was amazing!

Waiting to meet Tink!

Her little dream come true!

And Ariel...Ella's favorite!

Day 2 Animal Kingdom

My sweet boy!

A little tired on day 2!

Squeezing in the bushes to watch the Animal Kingdom parade.

Mommy was feeling it too!

Day 3 back to the Magic Kingdom...it rained a lot!

Freezing, tired and waiting for two hours to watch the light parade. We took turns holding our
good spot while the other did bathroom trips and got snacks.