Our Biggest Hurdle Yet with LB. Post 3

A few weeks went by and we had told all of our close family and friends about LB’s diagnosis. I am an avid Facebooker, but I just haven’t felt the need to share it over Facebook.

It’s actually kind of strange since I feel comfortable talking about it on here, but not on there yet. I just have had the feeling the whole time that if someone was close enough to us to know, then will already have known by now. We’ve called and talked to everyone we wanted to tell.

Maybe I’m just not ready to walk into the grocery store and see all the sympathetic stares from everyone in town. We live in a very small community, so once it’s Facebook official you might as well have it posted in our town paper.

It’s not a secret we are holding onto, nor is it something we don’t like talking about (quite the opposite actually) And, generally, if people ask how they baby is doing – depending on our relationship- I usually tell them.

It has NOTHING to do with being ashamed of her diagnosis, but I think it’s really been about my emotions.

I just don’t feel like having people stop me and tell me how sorry they are, which I have had a few.

I have even had people tell me that they will be praying she doesn’t have “it”

and THAT is the reason, right there, that I do not feel like sharing it with our whole town just yet. I always smile at people when they say that and tell them, “Please, just pray that she is healthy. That is all we care about.” But deep down inside I am so frustrated.

I know people don’t know what to say when they hear these type of things. And, I also know that they don’t mean any harm; they’re trying to comfort me.

Honestly, if it were the other way around, I am not sure that I wouldn’t be saying the exact same thing. 

But living through it, it is just not what I want to hear. I feel like people are telling me that it is the worst thing that can happen to your child and they are praying that it doesn’t. Yet, that’s not how I see it at all.

Will she face difficulties? Of course. Will our family have to adjust to a new way of life? Yes. But will it affect how much we love her? No. Will it make us wish she was any different? Absolutely not!

My biggest hurdle in those first few weeks was not that she had down syndrome, or how our family was going to handle a having a child with a disability, but living with the fear that she would have further health problems. THAT is what I wanted people to tell me they were praying for. That our baby is healthy (I do not view her down syndrome as “unhealthy”).

I didn’t want her to face any more struggles than would already be coming her way. And my biggest fear was that she would have heart complications, which effects 50% of children with down syndrome. So it really was like flipping a coin. How lucky did we feel?

We had an ultrasound scheduled with the specialist for 20 weeks to check on her growth and how her organs were developing.

But at 18 weeks I got a dreadful phone call. 

My doctor called and told me that the blood work we sent off to check for spinal abnormalities came back high. Although, she wasn’t concerned because she thought that the test was just picking up on LB’s down syndrome, so she tried comforting me with those facts. But I immediately began to worry.

She said that at my next ultrasound we would be able to tell if the baby in fact did or did not have any spinal cord issues- but that was still TWO WEEKS away! How could I last that long worrying? How would I sleep at night with a racing mind?

Luckily, she was able to pick up on my distress and said that she would try to move my appointment for that week. Praise God! But the next step was the hardest…

I hung up the phone and immediately called my husband. He had accepted LB’s diagnosis immediately. In fact, one of the first things he said when he found out she had down syndrome was, “Well, she can play in the Special Olympics right? I guess I’ll have to coach that!” (He’s a devoted coach in our children’s lives, and even the lives of other children, so it melted my heart to hear this). However, I knew he wasn’t going to take this news well.

LB having down syndrome was one thing. It would make her a little different, but not handicap her- this would handicap her. And I knew that was his greatest fear.

I was right, he didn’t handle this news as well as the other.

He was scared, immediately, and when he gets scared his first emotion is anger. He was mad that we were just now finding this out. He was mad that the doctor had originally expected us to wait two week to find out for sure. And he was mad that his child could be facing an even harder life than we expected.

He eventually calmed down, and I reassured him that I did not think she had any spinal issues. I had been feeling her move around and kick for a few weeks now. To me, that meant she had to be okay. How could she kick around if something was wrong with her spine?

So, a few days later we were able to go in and see the specialist. We watched her on screen, and just like every time before, we became captivated by her. Watching her wiggle all around, even hiccup, mesmerized us- and for a moment we would forget why we were really in there.

The ultrasound technician then broke our moment of bliss with a sentence I will never forget, “Her spine looks fine, but I do see an issue with her heart.”

My heart dropped. There it was, my biggest fear. 

She walked out, not saying much more, and we waited for the specialist to come in.

We were filled with so many emotions. Thrilled because it looked like she did not have any spinal issues, but terrified because something was now wrong with her little heart.

The specialist walked in. He sat down and began the ultrasound again. As he was looking at her, he showed us how her spine looked normal and pointed out all the signs they look for in spinal abnormalities and she did not have any. Hallelujah! But then, he moved on to her heart.

He explained to us, in layman’s terms, that a healthy heart has four chambers. However, LB’s heart did not have the normal four chambers. Instead, she had a hole in her heart.

Basically, her chambers were not fully connected. So the blood that is being pumped into each of the chambers, instead of being kept separated like they are supposed to, is now mixing together. So her heart will have to pump extra hard to get the blood to flow where it needs to go.

He then told us that our next step will be to see a cardiologist. They would do an more extensive ultrasound of her heart and can give us a proper diagnosis. He did try reassuring us by saying that out of all the heart conditions, this is one of the most common associated with children with down syndrome and the easiest to be fixed. But “fixing” it requires surgery.

Open heart surgery

Weeks passed and it was finally time to meet with the Cardiologist. During that time of waiting, I kept myself from googling or “researching” anything that had to do with heart defects. I just couldn’t handle it. I didn’t want to know what happened to someone else; I just wanted to know what was going to happen with our LB.

After another ultrasound (which easily became my favorite part from all these visits), we met with the cardiologist. He sat us down and explained what he saw.

He informed us that she did in fact have a hole in her heart (Technically she has a tiny atrial level defect, separate AV valves, and a moderate sized inlet VSD -hole-).

The way her heart looked, instead of being able to pump in and out oxygenated blood and keep it separate from the unoxygenated blood, her heart will mix it together. This will cause her heart to have to pump twice as heard to get the oxygenated blood where it needs to go.

He told us that she will require open heart surgery after she is born (about 4-6 months, depending on how long she can hold out for).

LB will need to take medication to help her until she can have surgery and, a few weeks after birth, we will begin to notice how hard it’ll be for her to breathe. We will see her having to catch her breath often, which will be normal for her condition and the medicine should help her with that.

Also, catching any illness, during that time, will be harder for her. A simple bug that would normally last a day or two, could take her weeks to get over.

All of this information just flew into my head swirling around. Thank goodness my husband was there and is a very analytical thinker. He asked 50 million questions and made sure he understood the diagnosis as best as he could.

We were honestly blessed with our cardiologist. He did two things that really stood out to me, and I don’t think I will ever forget.

First, he gave us his personal cell phone number and told us to call him ANYTIME with questions. He said that even if it’s the middle of the night and I can’t sleep because I am worrying about something in my head, to call and ask him. Now, will I really do this? Probably not, but the simple gesture meant the world to me.

And the next thing he did meant even more.

It’s not actually something he did, but something he said. He told us,

“If God wants to heal your baby before we can then we will let him!”

He explained to us that he has seen cases where he knew, medically, that the child would no doubt require surgery. Then, they would come back and it would be like looking at a completely different child. He wouldn’t be able to find anything wrong with them!

Now, please, tell me how many times a doctor- the “man of science”- will admit the power of God’s healing. Not many will. But he did, and I loved it!

He gave me the push I needed to strengthen my faith and put my hope in God. Instead of planning out her surgery in my head, which I normally would’ve been doing, I was now focusing on trusting God.

I know he can heal her. I have faith that we can go back, next week actually, and the doctor will find a perfectly healthy heart. We have prayed over this child. We have had pastors pray over this child. And I will never stop praying over this child. I am keeping faith that she will not require surgery after she is born, because her heart will be healed.

Now, am I living in a fantasy world and not listening to the doctors and what they tell us? No. Do I think there is a chance that she will need surgery? Sure, but I know that if she does then THAT is the way God will heal her. Either way, I know my baby will have a healthy heart and if it means she will need surgery, I know that God will be there with her giving her strength and guiding the surgeons.

It is scary to think about your child having to go through these things. I still cry about it purely out of fear. I’ve actually cried quite a few times writing this. This is an emotional situation involving our baby. I think it would be out of the normal not to cry, but that doesn’t mean I don’t have faith.

As I sit here typing this, feeling our little LB bounce all around, I know she will be okay. God made her this way for a special purpose. Her future will hold something far beyond what I could ever imagine; I’m sure of it.

“For I know the plans I have for you,” declares the LORD, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11