Wandering MindΒ 

Family and friends-

As I sit at home with Annalise sleeping in her rocker in front of me… my mind wanders. What if she had passed away in the first hour like the doctors predicted? What if, ten weeks ago, we would have gone into the hospital to not only welcome our first baby into the world, but send her off to her forever home? Would I have been okay?

I don’t know.

Would my mind have been filled with anger and questioning whether or not He could have healed her? Would I have been filled with curiosity as to why He didn’t?

I don’t know.

Honestly, I probably would have had those thoughts.

I’ve been thinking about how we as Christians want to have a definitive answer to everything. We want to be ready when someone asks us how we are dealing with loss or trials. But sometimes… the answer to those questions is “I don’t know”.

I’ve come to the conclusion that…We don’t need to feel like we have to have all the answers. We don’t need to fill those gaps when God can. God is perfectly capable of revealing Himself.

I’m sure I would have grieved the loss of what she would have been (and I am sure I will when the day comes- even now- when she goes “home”). Β (SIDE NOTE- I’ve been under the assumption that most people still wonder what the doctors predict about her life expectancy… The answer is we don’t know. They say that most babies with this diagnosis pass within the first year… either from some type of infection or from her body outgrowing her brain essentially. Β So we are living day to day and cherishing every moment we get with her!)

But we have hope for a reason. I know full well that I do not have to ever wait in vain. I fully believe that He is real and that He is in control. I believe in His promises. I believe He is working everything in my life (and yours) for good. I believe He is who He says He is. This leads me to believe that we are on this journey… Walking the path that leads to Him and her (when that time comes) for a reason. We are here to give Him glory through it all.

Knowing that she will never return to us (when she passes) but that one day, we will go to her is part of the reason we have hope in our Lord. We know that His promise of eternity is real. We are forever grateful for that.

We are also forever grateful that we have been able to spend the last TEN weeks with our girl. That’s right… We have hit double digits! There is nothing else to say but that we are incredibly blessed!

Annalise is still going strong and is definitely gaining a little momentum! ;p

On Monday, she weighed 9lbs and 2.5oz…. so the higher calorie intake is working! πŸ™‚ Her cry is becoming even more pronounced AND she is starting to use it more! She is working her legs more and more and moving her arms around like crazy. She loves sticking her tongue out and absolutely LOVES looking at bright lights. I actually found a play mat/gym that lights up and plays music and she will lay under there forever just watching and listening. It’s adorable.

Yesterday (the 28th), we finally had our evaluation with Infant Toddler (the early intervention/developmental program we are trying to get Annalise into). Everything checked out and she will start seeing a therapist here in a couple weeks! πŸ™‚ The ladies who came to evaluate were actually pretty impressed with how well Annalise is doing. Even though she is 10 weeks old, developmentally she is only a 5 week old baby since she was 5 weeks premature. Crazy to think that she is already doing a little bit more than what a normal 5 week old baby does! But why should I be surprised at that when I know who is in control over this whole situation?!?

Have I ever mentioned how great our God is?!? πŸ™‚

We are so thankful and so blessed to have this little fighter in our lives.

I can only hope and pray that each of you who are reading this blog, find something meaningful out of it. I hope and pray that you realize that our God is greater than anything you are going through. He deserves all the glory and praise through every circumstance. He is faithful.

And as always… I will leave you with a bunch of the most recent pictures πŸ™‚

 

Have a blessed rest of your week!

(http://www.gofundme.com/hopeforannalise)

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Choosing the Harder Path

Family and friends- Hello! It has been a great past week in our household!
Last Friday was the 17th… which means baby girl turned 2 months old! Whoot whoot! Β For those of you who don’t see our Facebook page (Prayers for the Pragels), we celebrated her 2 month birthday at the Royals game for her first game ever! It was a blast and she loved it! πŸ˜‰πŸ˜Š
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Also on this day, I posted a little video of her doing tummy time. When we do tummy time with her, for part of it we support her head so she can start gaining strength in her arms and legs. Here is the link to the video- for some reason I can’t put videos up on this blog site, only photos. (Hopefully the link works!)Β https://www.facebook.com/1543499849231425/videos/1572040379710705/

Then on Monday (the 20th), this is what I posted on our Facebook page after we saw the eye doctor for little Miss!
“Once again… I am blown away and amazed at this child of mine. 😍
Here is what I was told by the eye dr:
Because she is so young, the eye dr can’t really tell us much. But what they can tell us is if the structure of her eye is there. AND IT IS! So all the needed structures are there and fine. The optic nerve is the most important part I suppose because that is what sends the signals back to the brain. AND SHE HAS THAT! So where the signals are being sent and if the brain picks up anything is unknown until she is older. So it’s a day by day kind of thing (like everything else with her). But she technically is NOT “fully blind” because the signals are being sent somewhere. We just don’t know if the little amount of brain she does have is picking anything up or relaying to her what she is seeing.
Yes, she will most likely be visually impaired of some sort but depending on how her brain “rewires” determines what she can and cannot see.
Have I ever mentioned just how amazing our God is?!? She was fearfully and wonderfully made by our Savior and I would not have her any other way!! She is such a blessing!”
Isn’t that such amazing news considering she is “supposed” to be fully blind?!?
Tuesday her nurse came for her normal routine checkup. I mentioned in the last blog post that we had to up her calorie intake to help her gain weight. Well last Friday she had only gained an ounce or two since the previous checkup so we had to up her calorie intake a second time this past weekend. It took her stomach a while to get used to the high volume of calories but it finally paid off! She went from 8lbs 3oz on Friday to 8lbs11oz on Tuesday! πŸ™‚ We have to continue with the high calorie intake for awhile yet until she starts drinking more and handling it better.
Then Wednesday (the 22nd) we had two checkups. One with her pediatrician regarding her weight and one with her neurosurgeon to re-look at her incision and shunt. Both appointments went well and got the “all clear” for now! πŸ™‚ We don’t have to do another checkup with the neurosurgeon until 2 months from now since everything is looking so good. And we will go back to her pediatrician in 2 weeks again to check her weight gain once more.
Annalise is just doing so well with everything and we couldn’t be more blessed by it!
As always, I will post the latest pictures of our sweetie- with her crazy new curly hair πŸ˜‰ and silly personality… But first.
Looking back on our journey, from the very beginning, I cannot believe how far we have come. I remember that day perfectly. All the emotions… the shock, the anger, the hurt, the pain, the numbness, the feeling of all the dreams and plans I had made being shattered…
But I have learned so much from this journey- first and foremost… It has all been worth it. She is worth it. Every child is worth it.
I have learned to love with everything I have no matter where the path may lead. I have learned to walk by faith more than ever as we learn how Annalise “works”. I live for her smiles and when she looks up at me with those big blue eyes. I live for those moments when she shows me that she knows to whom she belongs to here on this earth.
I recently read a blog post about loving someone you could lose (loving a child in spite of a diagnosis) and it really hit home with me. The writer wrote, “…they deserve every single ounce of strength, of love, of faith, of hope, of fight that we pour out. They deserve all of our heart, because these perfect, special, fragile children give us nothing less than everything they have….. And it is worth every single second- every beat of their heart, every whispered prayer, every ounce of love given, every time you held their hand, every tear shed, every smile, every kiss, every lullaby and every single time they looked at you with soulful eyes, and told you in their own way, “I love you, too.” They are worth it all.”
I cannot imagine life without having Annalise now. I cannot imagine how anyone could end a life because they were told that their child has some type of disorder or diagnosis.
Every. Single. Child. is worth it. Always.
You never know what God has planned for that child.
We had no idea that Annalise would be alive today and that she would be doing so well. But we are so incredibly thankful that God’s plan always prevails. We are so thankful that we chose the “harder” path.
Because we chose to go on this unexpected journey, we have a girl who loves to show how great our God is and how He has a plan for everyone. We have a beautiful, special little girl who has changed a lot of lives already… including mine. (And I don’t think she is done yet.)
I cannot wait to see what else this girl can do!!!
And as promised… Here are the latest photos! 😊

Two Fun “Firsts”Β 

Family and friends- Sorry I have not updated sooner than this but life happened and I got a tad bit busy 😜 

Last week on Wednesday (April 8th), Annalise had a couple check ups. First we went and saw her neurosurgeon to follow up with her shunt surgery and get her stitches taken out. Then we went and saw her pediatrician for her 2 month well exam!
That day was a very long day for us. We were at the hospital for a total of about 4.5 hours! Let’s just say when we got home we both took a long nap. πŸ˜‰
Anyways…. After about an hour of waiting, we finally got back to get her stitches taken out. Baby Girl did NOT like that. She squirmed and made her noises the whole time. Poor thing. Β But here is a cute “selfie” I got with little Miss while we were waiting and also a before and after of her stitches!
After getting her stitches taken out, her neurosurgeon came in to look at everything. The main thing I was concerned about was how her skull bone is pushing on the shunt. Luckily he said that he is not worried about the bone or the shunt because both are pretty strong and durable but that he is worried about skin breakdown. “I can always fix a shunt but I can’t fix skin breakdown” is how he put it. So… we have to go back next week so he can re look at it and make sure it’s still okay.
While I had him in the room, I asked him about the MRI we had done. We had never officially heard the results — except that it was the same diagnosis as the last ultrasound (the hydrocephalus and hydranencephalus). He pulled the images up on the screen and told me what he saw. He pretty much said that he wouldn’t call it hydranencephalus (because there are many different definitions of it and from what he understood that meant she had no brain) because she did have some of her brain and brain tissue. So who knows what “disorder” she has. We have grown accustomed to the doctors not really knowing what to say but trying to be as informative as possible. πŸ˜‰
Anyways…. The simplest way to put the results is that she has the bottom front of her brain and a very small amount of tissue in the front. He said that she has her temporal lobes for the most part which is what controls her hearing. So Annalise pretty much only has the part of her brain that allows her to hear.
So according to him, she won’t be able to crawl, walk, talk… Basically everything except breathing, eating, sleeping, and hearing (which is what she has been doing). I asked about vision then because she does respond to light and he said she is most likely blind because the part of the brain that controls vision isn’t there. He said the eyes dilating and responding to light is more of a reflex type thing that the brainstem can do on its own. Upon hearing this, we have set up an appointment with the pediatric optometrist next week to finally know for sure if she is completely blind or not. The more we have watched her now since hearing this, the more we think she is “looking” by sound instead of actually seeing. But! We will find out next week!
After finishing up with the neurosurgeon we then headed over to her pediatrician. Her pediatrician did a full exam for her 2 month check up. (Yes we did it a week or two early because she was “behind” on her immunizations and what not.) Β But- Can you believe she is 8 weeks old tomorrow?!? Time really does fly by.
Her pediatrician checked all her vitals (which were good- like always), checked her reflexes (which she has all the normal baby reflexes!!!), checked her weight (which she was about 8 lbs 2 oz), and went over everything else we needed to talk about.
According to the lovely growth chart doctors go by, Annalise is in the 50th percentile of height and only in the 5th percentile of weight. Because of this we had to up her calorie intake and try to get her to take more amounts during the day. She is actually handling this change very well so hopefully she starts bulking up soon! 😜
One thing I don’t think I have ever mentioned on here is that baby girl does have small tremors. It’s mainly when she is stretching and moving her muscles but it’s something we have to keep our eyes on because it could be a sign of seizures. Because they are everyday though, we will be meeting up with our neurologist sometime soon to look into it. We want to Β essentially “stay on top of it” for if she does end up getting seizures, we will be ready and know what to do and get her the necessary medicine or whatever to help with it.
We are also in the process of getting her started on occupational therapy and physical therapy to help with the little amount of brain she does have. And if she is blind then I’m sure there are things we will need to do to help with that as well. Hopefully we can get the therapies started here in the next week or two!
Also during her 2 month exam, Annalise got the first 6 immunizations every baby needs. She didn’t even flinch for those shots. And luckily she wasn’t irritable after them! She never even got a fever! Woohoo!
Overall, her appointments went fairly well and she was a trooper through it all! I’m just always so proud of her. ☺️
There were a couple “fun” things that happened last week for Miss Annalise.
For the first time, Annalise found her mouth. πŸ˜‚ Since she has been having her hands all over her face lately, it was bound to happen. One morning, her hand moved across her face until her finger went into her mouth. She sucked once, made a disgusted face, and moved her hand away from her face. It was quite hilarious. I’m pretty confident she probably won’t be a thumb sucker after that reaction!

 

 

Along with finding her mouth for the first time, she also found her foot for the first time last Thursday! Now, almost every time she is stretching, she goes for her foot. 😊 The other night, when she got done eating, she was sitting in my lap, just holding her foot. So cute!
Well… That about sums up the past week with Miss Annalise!
I do want to say thank you to my co-workers and families from my job that put together a little baby shower for us this past weekend! I was so overwhelmed by the love and support from you guys!!! You guys are amazing and we are so thankful for each and every one of you!
Since I know y’all like pictures of our little princess, I’ll leave you with a few! 😊
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I hope y’all have a great rest of your week and remember to anchor your hope to the One who has already scripted the perfect ending! πŸ˜‰πŸ˜Š

Abundance of Cuteness

Hello family and friends!

I can only imagine that y’all have been (impatiently) waiting for little Miss Annalise’s Easter dress picture….so wait no longer! Here is our beautiful little angel in her Easter dress:

Easter weekend was spent with my entire family and it was so so good. We went out to eat (Annalise’s first time eating at a restaurant!) and went to church together- where Kev got to do his first baptism!!!! I was so proud of him and I’m sure Annalise was too! πŸ˜‰πŸ˜œ

Annalise is still doing so incredibly well! Her eating is picking up, her body temperature is improving still, she’s slowing getting accustomed to sleeping in her crib, and her personality is getting stronger! 😊

Since I don’t really have much to say since nothing has really changed in the past week… I’ll just put up lots of pictures. Mainly because I know y’all enjoy seeing them πŸ˜‰ And she’s too cute not too! (I may be a tad bit biased though!)

This first set of pictures amuses me. Before surgery, she hated anything touching her face. She would never put her hands anywhere near her face. Now post surgery… She always has at least one hand touching her face somehow. I just think it’s adorable.

Finally, we just have a bunch of random photos that show off the many faces of Annalise Hope. Some are of her many different smiles while some were just snapped at the right time. πŸ˜› There are a few that are just too funny not to share! So…… enjoy! πŸ™‚

This week we have her follow up with the neurosurgeon and her pediatrician on Wednesday. This will be the day she also gets her stitches out! Pray that everything checks outΒ that day and that the shunt is doing what it is supposed to do (accurately).

Thank you all for the continued prayers as we walk this journey with Annalise! They are so greatly appreciated! πŸ™‚

As always…. don’t forget to spread the word around about our site to help with bills and whatever else Annalise may need to live the best life possible! (http://www.gofundme.com/hopeforannalise)

May you all have a blessed week full of cherishable memories!

—Anchoring our hope to the One who has already scripted the perfect ending—