Wanna know a secret?

Now that our story of our first sweet little baby is out there, it’s time to let y’all in on the next set of information!

What gender IS this baby?!

We found out the gender on October 15th, the first day we found out about the brain….the day we were oh so excited for. But with trying to figure everything out and trying to get definitive answers before we let people know, we decided to put the reveal on pause. But today, is the day! 🙂

Our sweet, precious, special little baby is a:

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GIRL!!!!!!!! 🙂

Pretty much everyone we knew thought we were having a boy because of the lack of symptoms I had during my pregnancy. All the old wives tales said we were having a boy 😉 But we are so excited for our little girl. Even if we don’t get any time or a short amount of time with her. The life she has now and will always have is being celebrated.

Now that y’all know what gender Baby Pragel is…here are a few thoughts from Kevin since putting our story out there:

I rest in a sovereign God who is in control of all things at all times. If she is healed and lives to be 103, then God is good. If she dies tonight and we never find out a single reason behind why she died or how this condition came to be, then God is still good. Since sharing our story with people most people respond with something like how impressed they are with our faith/strength/and so on. When I sit down and think about it, I’m not strong at all. I don’t have the will power to get through this. I don’t have answers or the comprehension to understand most of what is going on. I do have Jesus though. I know that God cares and loves us and cares and loves this child. I have peace knowing that God will work this out for us. That’s the only reason I can get through this and smile and laugh today. If God decides to never give a child to us ever again, then God is still good. That is the biggest thing I’ve learned through this all. I knew it before but it has really sunk in for me. God has His purpose and His plan. That’s all I really have. My prayer through this whole thing has been partly for God to heal our child but the main prayer is that God will be glorified. That all of those who hear our story will see we have a greater hope and a greater peace. And that they would also have a greater gratefulness for what they have. That you will see God is glorious no matter what. That you will see that all we need is Jesus. I hope that God can reach your hearts through this whole situation and see that we are weak. Candace and I are so weak. God is so strong. God is good.

AMEN!

With all that said, we want to reveal to y’all baby girl’s name. (Bet you didn’t know you were getting two treats in one post!)

Since Baby Girl is very, very special to us and our families…we wanted to give her the most perfect name. But with that, comes meaning behind it.

Her first name means: Grace or Devoted to God. We know that this is all of God’s doing. Our story is going to be used for His Glory and His Kingdom. She has and always will be His. She is dedicated. She is loved. She is special.

Her middle name is pretty self explanatory. We know that God has a plan and a purpose for her and for us and that is where our hope lies.

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So Baby Girl can now be referred to as:

Annalise Hope

We cannot thank y’all enough for the kind words and prayers that have been sent our way the last several days. We are so incredibly grateful for people like you and we truly appreciate every text, message, email, and post we have gotten. It is so amazing to already see what God is doing in our lives and in others around us.

We continually pray that our story and our sweet little Annalise’s story will bring glory to God everywhere we go. We literally cannot do this on our own. Just like Kevin said, we are so incredibly weak. God is the strong one that is holding us together. Without Him, we would be a mess. I’m so thankful for the love and grace of God to all of us.

“I will stand my ground where hope can be found.” – O’Lord by Lauren Daigle

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Surprise of a Lifetime

Kevin and I went to my regular checkup on October 15th hoping to get to find out the gender of our first baby.

What we got was SO much more.

When the lady doing the ultrasound that day got quiet and asked if she could do an internal sono to get a better look at the head, we knew something was wrong. She went and got my OB to which we knew something was REALLY wrong. My OB came in and said that the “ventricles in the brain were dilated, which meant they were bigger than they should be”. After being transferred to a specialist, in a different hospital, we did another ultrasound. To which that doctor asked to do an internal one as well. When the specialist finally sat down with us, he simply said, “I wish I could tell you that this was just about the ventricles….but it’s not. The brain did not develop like it should have. It did not split into the two hemispheres….”

That day, Kevin and I were bombarded by so much information. Words we have never heard of, conditions and disorders that we never thought we would have to deal with…. It was too much. Why was this happening? This is our first baby. Why my first pregnancy? But luckily, there is a just and perfect God who knows what He is doing.

That day was probably one of the hardest days of my life. There was no stopping the tears, the thoughts running through my mind, the sorrow, the hurt…. It wasn’t until the next day that I could talk about it without crying. That is all because the night we found out, Kevin and I sat down and just prayed. We gave this situation up to God, not asking to understand why, but just to help us trust Him and know that He always has a plan. It was because of this that we can sit here and tell you our story (and now part of our testimony) without hurt and suffering. We know that this was all supposed to happen.

Just a few days later, on my birthday (the 17th), we got a call from my OB just wanting us to talk to him and ask him any questions we had now that it had been sitting on our brains for a couple days. We learned that baby has the brain disorder called holoprosencephaly (or HPE). HPE is the umbrella term used for the process of the forebrain not splitting into the two hemispheres. HPE ranges from mild to moderate to severe. Mild would mean that there has been some splitting but not all the way and severe would mean that there was NO division whatsoever. Baby Pragel has the most severe case of holoprosencephaly. There was absolutely no attempt at even trying to split. Even the connecting tissues between the hemispheres didn’t do their job.

The best case scenario for a baby with the severe form of holoprosencephaly is a short lifespan. There is always the chance of the baby not making it full term and dying in the womb. If baby makes it out alive, the quality of life depends on how we want the doctors and specialists to treat Baby and how severe the baby’s condition is. Most severe cases, from what we understand, generally only survive for several months.

Today, October 28th, we went back to the specialists to talk and try to understand more. We learned about the causes of holoprosencephaly and what it means for the future. Because there is no family history indicating that this was a heredity thing, this is a 1 in 16,000 chance of happening. The only thing I can say is that this baby is special. We may never know why this happened but we were told that this is very unlikely to happen to us again. Most likely, it’s just a genetic hiccup. Either our genes had a “misspelling” or there is an extra chromosome somewhere. The most common type of chromosome disorder that it would be is Trisomy 13. We did take a blood test today that will most likely tell us if baby does have Trisomy 13. If baby DOES have Trisomy 13 on top of HPE, then the life expectancy decreases dramatically. Most Trisomy 13 babies do not make it out of the womb.

Because we are still pretty early in the pregnancy, there isn’t much else we can do. We will get the results from the blood test back in a couple of weeks to show us if Baby Pragel does or does not have Trisomy 13. When we get further along, there will be more visits and testing done to help us determine just how severe this all is. Baby will get an MRI done in a month or so to really help us determine how severe it is and to help us better prepare for when the time comes to deliver. The truth is, this journey is just beginning and there will be A LOT of unknowns until the baby is born. The doctors and specialists can generalize the outcome and give us all scenarios that are possible, but we will not know what exactly this baby has in store until it is born.

It can be very hard not knowing what to expect but we firmly believe in a Sovereign God. We know that He has a plan and a purpose for this happening to us. He gives us a peace within us that no one else could. He is the reason we are getting through this. We trust in Him and we have faith in Him. We pray for the best possible outcome but know that His will is the best and only way to go.

So here we are, on this unexpected journey.

But luckily….

“I know who goes before me
I know who stands behind
The God of angel armies
Is always by my side” (Whom Shall I Fear by Chris Tomlin)