In Christ Alone

Hello friends and family!

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Tomorrow we are 33 weeks…which means we are 3 weeks (or less) away from meeting our special baby girl. I say or less because if Annalise’s head gets too big for a regular C-section, we would have to do a classical C-section. This option isn’t the most ideal. So next week at my checkup, we are going to do a sonogram to remeasure her head and decide if it’s growing too fast. If the doctors think it is already too big, they may have to move up the C-section. So our 3 weeks from Friday could turn into the next week or two. Oh boy.

Am I ready? To be honest… I don’t know. I don’t know how to feel at times. I can sit here and say to myself and to all of you that it is going to be okay…. that I am excited for this day. But, when that day comes, I don’t know how I’m going to feel or all the different emotions that will take place. I can’t even fathom what will be going through my head on that day.

But I do know this- that God is with me, He will strengthen me and help me, and He will uphold me with his righteous right hand (Isaiah 41:10).

To end this short update…I’m going to leave you with part of a song that was blaring through my speakers today while making supper. It was just the reminder I needed to hear today.

“In Christ alone my hope is found,
He is my light, my strength, my song;
this Cornerstone, this solid Ground,
firm through the fiercest drought and storm.
What heights of love, what depths of peace,
when fears are stilled, when strivings cease!
My Comforter, my All in All,
here in the love of Christ I stand.

No guilt in life, no fear in death,
This is the power of Christ in me;
From life’s first cry to final breath.
Jesus commands my destiny.
No power of hell, no scheme of man,
Can ever pluck me from His hand;
Till He returns or calls me home,
Here in the power of Christ I’ll stand.”

Annalise may have a short life expectancy but from her first cry to final breath, God had it all planned out. There is nothing that could ever take her away from Him. God is Sovereign. We fully believe that.

I hope that y’all have a great rest of your week! I will update next week after our sono!

May the Lord bless you, keep you, and give you peace!

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Coming Soon!!!

I apologize for making y’all wait so long to be updated! We wanted to make sure that certain things were taken care of before we posted for everyone to see! But- the wait is finally over!

On Monday, January 19th, Kev and I went to Shawnee Mission to see and meet the perinatologist. (We have decided to deliver at Shawnee Mission because of proximity and the outcome being the same. This is why we were meeting up with the specialists “again”. We have never met/seen/talked to the specialists at Shawnee Mission. We wanted them to do their own looking and researching instead of just going off of Children’s Mercy’s information.)

Anyways….

We did an ultrasound to relook at the brain of our sweet little Annalise. And, of course, she wouldn’t show her face. She was curled up in a ball with one foot on top of her head and her hands over her face. We have yet to see her entire face straight on. She really must want our first look at her to be outside of the womb!

After we got done with the ultrasound, we went and sat down with our perinatologist. It was during this consultation that we learned something new. Annalise not only has holoprosencephaly, but she also has hydrocephalus.

Hydrocephalus is the excess fluid in the brain. This is the cause and reason for her abnormally large head. When babies just have hydrocephalus, doctors can just drain the excess fluid after they are born and the child can survive. In our case, draining the fluid will do nothing. This is because Annalise’s form of HPE was so severe that not only did the brain not split, the tissue in the brain is nonexistent. Usually with just hydrocephalus, the fluid just pushes the tissue to the outside so when the doctors drain the fluid, the tissue will form back. Because Annalise has no tissue, draining the fluid would only do just that- drain the fluid.

The perinatologist at Shawnee Mission did confirm that Annalise has the most severe form of HPE and was very confident that she would not live long. Now, no one can give us a rough time frame of what “not long” is, even though the doctors tried to and said it probably wouldn’t be more than one hour. Only God knows how long she will be with us. We have hope that we will get exactly what we need though. We know His timing is perfect. Whether we get one minute, one hour, or one day with Annalise, we know it will be perfect and the most cherished time we will have so far in our lives.

During that consultation, it was also confirmed that we would have to do a C-section because of the size of her head. When we went in for the ultrasound on Monday, her head had grown from even just the last appointment. If Annalise does not come on her own in the next several weeks then we can have a scheduled C-section at 36 weeks gestation instead of 39. This is because of her condition and the head growing daily that they can do it early.

So! We decided to go ahead and schedule it!!!

If Annalise does not arrive on her own in the next couple of weeks, we are scheduled to have her on February 20th! That is SO close! We are so excited/nervous/scared/ready for this day!

On Wednesday, January 21st, we met up with our OB for a regular checkup (which we do weekly now because of the situation). Then we went back later to meet up with the neonatologist. We met part of the team that will be in the room with us specifically working with Annalise. This time was spent discussing the different birth plans and how we want them to treat her when she is born. They described to us how Annalise just has her brain stem. So when she is born, the signals that are sent through the brain stem to the brain have nowhere to go. She won’t know how to do things on her own because the brain stem isn’t able to transmit the signals where they need to go. Simple things like knowing how to breathe and how to swallow probably will not happen. This is why they can say with confidence that she will not live long.

They did their best at explaining in detail what the day of our C-section would look like and how to help us get prepared. Now it’s just up to us what all we want to happen. Decisions have to be made-whether big or small. Decisions as simple as do we want to hold her to big decisions like having her be an organ donor and so forth.

The main decision we have to face is how we want the doctors to treat her. Shawnee Mission described 2 different ways of doing this. Either there is “comfort care” or “aggressive medical care”. Comfort care is how they treat any “normal” baby. If the baby comes out and can’t breathe on their own, they will use the oxygen mask and so forth. The child stays with you in the room and you get the skin-to-skin contact while attending to the child. Aggressive medical care means they do whatever surgery/operation/etc. that is needed to prolong the life of the child. This would mean that they would take Annalise and rush her to Children’s Mercy to operate because Shawnee does not have all the necessary medical equipment for those types of situations.

This is where the tricky part comes in. There is absolutely no surgery or operation that will fix her brain. So either, we “let nature take its course” or we do whatever necessary to prolong her life when there is no fixable surgery.

Over the next couple of weeks, we ask for prayers of guidance and comfort as we make all the necessary decisions. We ask for prayers of peace over all of our final decisions as well.

So that is all the big news I made y’all wait so patiently for! Thank you again for all the thoughts and prayers over the last several weeks and months!

Just for a fun update- we took our youth group to Winter Jam (a Christian concert featuring several bands) last night. So Annalise got to experience her one and only Winter Jam!

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I think she loved it! 😉

Here’s another random tidbit of info. I have a love/hate relationship with Hobby Lobby. Every time I go there, i just dream of how I would decorate my house and always want to buy everything there. Well, I made Kevin go with me the other day because they were having some good sales and I knew if I went alone, I would buy too much. But look at what we found and is now in our living room for all to see:

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There is no need to even explain this. It’s perfect. It fits us.

Well…. with all that said, my next check up is Wednesday. We have to continually watch her to make sure she isn’t getting too big. If that would happen, we would have to do the C-section earlier or do a classical C-section. But, with how stubborn and hard headed she has been, I’m pretty sure she will wait to make her debut on the 20th! 😉

Oh! One more thing. (And you thought you would get away with me not reminding y’all!) Remember to share our fundraiser page! (http://www.gofundme.com/hopeforannalise) Now that we are only 25 days away from meeting our sweet, beautiful Annalise, expenses are going to start sooner than we thought! We would appreciate it so much if you could continue getting the word out to help support us in this journey! We love you all and really do appreciate the prayers and support we have been getting.

Have a blessed week! We will continue to update you as the days progress over the next month!

“My hope is built on nothing less
Than Jesus’ blood and righteousness;
I dare not trust the sweetest frame,
But wholly lean on Jesus’ name.
On Christ, the solid Rock, I stand;
All other ground is sinking sand,
All other ground is sinking sand.”

Made Me Glad

Hello friends and family!

I just wanted to write a small post to update you all on what is going on!

Last week I went to my regular check up and when my OB was measuring my stomach, he noticed I was a little big and thought maybe I had extra amniotic fluid surrounding the baby. The only “danger” to this is that it could mean Annalise is not swallowing right. So he sent me to do a sono to measure the fluid. Well, of course, while getting my sonogram done, baby girl was face down. The only thing we could see was her spine. She sure does not like the doctors looking at her! 😉

But! The fluid was just a little high and nothing really to worry about. If the level keeps going up though it could put pressure on me and cause an early labor. Her body and legs, from what we could see, measured right on track which was right at 30 weeks. But as you can see from this picture:

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Her head measured at about 41 weeks. This is due to the HPE. All the black areas in that circle is the fluid in her brain.

Lets hope it doesn’t get much bigger for my sake 😉 But if it does, I’m sure it will probably turn into a c-section.

Next week is a big week for Kevin and I. It’s the week we have been waiting for for awhile now.

We finally get to meet up with the specialists at Shawnee Mission! Monday the 19th, we go in for the imaging part. The specialist will re-look at the brain and see if it’s the same, worse, or better. (But according to the pic from above, it’s the same.) Then on Wednesday, the 21st, we meet with our neonatologist. She will be the one working directly with Annalise when she is born. All the questions, concerns, and thoughts we have should be answered this day. Hopefully. We will talk about our birth plan and how we want the doctors and specialists to treat her when she is born and we will also be meeting with the maternity navigator doing the basic paperwork, tour and all that fun jazz.

Things are starting to become “more real” for us now that we have hit the last 10 weeks of this pregnancy. When we first found out about the HPE, we kind of just sat back and let it happen. We didn’t get prepared in any way. We didn’t go buy the necessities because we didn’t know if we would be able to bring her home and use them. We still don’t. But, that’s a different story now. We finally bought a crib in hopes of bringing her home. We have been getting the necessities that any newborn baby needs. It’s been a slow process because we don’t know what is going to happen but it’s happening. If we get to use them, praise the Lord! If we don’t get to use them, then praise the Lord still!

Even though we don’t know what His will is yet for Annalise, we know it’s perfect. Yes, Kev and I hope that we get to bring our special little girl home, but if we don’t, we know God will always be right there guiding us.

I never thought going through such a “terrible, difficult” situation would show me just how blessed I am. Usually when people go through tough times, it’s hard to see the good. It’s hard to stay focused on what the Lord is doing because you are so focused on the bad. But through our situation, we have grown more than I think we ever would have planned. We have learned so much about obedience, trust, love, hope, and faith. We have seen how blessed we are by the people around us. We have been blessed with one of the best church families we could possibly ever have. We are so grateful for all of you who have been praying for us. We cannot thank you enough or tell you how much we appreciate you.

Last Sunday, in church, we sang the song, “Made Me Glad”. Just look at what the beginning says:

I will bless the Lord forever
And I will trust Him at all times
He has delivered me from all sin
And He has set my feet upon a rock

And I will not be moved
And I’ll say of the Lord

You are my shield, my strength
My portion, Deliverer
My shelter, strong tower
My very present help in time of need

Being my pregnant, emotional self, I found myself crying during this song. He has always been so good to us. He is always there to be our shield, our strength, our portion and shelter. He has definitely been my strong tower and help during this time of need. There is no one else that could make us glad during tough times. How can we not rejoice for having such an amazing, sovereign God as our Father?

With all of that said, we are looking forward to the next 9 weeks and what it is going to bring us! We will continue to keep you updated with our journey as it progresses!

We love you all!

Cherish Your Moments

First of all, I hope all of you had a wonderful and blessed Christmas with your loved ones. I hope that this New Year brings you many blessings and moments to be cherished!

The phrase, “Cherish Your Moments” is kind of my theme, if you will, from now on. Ever since finding out about our baby, I’ve started cherishing moments more than I ever thought I would. For example, the joys of feeling my baby kick- even when it hurts- is simply wonderful. The times I get with family mean even more because now I truly, fully understand that life is precious. You never know when the time is going to come to say goodbye forever.

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This Christmas we considered it Annalise’s first Christmas (since we have the doctors words saying she will have a short lifespan. 😛 We hope and pray that she has another Christmas outside of the womb, though. How wonderful would that be?!) Because we considered it her first Christmas, this year was a little bit more special to us. “Hope” could be found in many places this Christmas. We had the word hope hanging right in the middle of our tree. My mother even did the same thing with her tree. Our Christmas card incorporated that word. It is just the perfect word to describe us and our situation with our precious girl.

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Anyways… my Christmas break started off a little rocky. Tuesday, while at work, I started feeling really nauseous out of nowhere. Well, I ended up throwing up several times that night. Just what I needed leading into Christmas AND the night before my glucose test. But, you want to know something amazing? Wednesday morning I woke up perfectly fine; ready to own that glucose test! It’s a reminder that God knows what He is doing all the time…even when we don’t think or believe it.

So it was time to drink that oh so delicious fruit punch sugar drink and go to my appointment. When Kev and I got there, it was the normal routine checkup. Annalise measured right on track (which was 27 weeks 6 days at the time) and then it was time to find the heartbeat. Nothing. The doctor moved the Sound Doppler all over my stomach for a good 3 minutes. She could not find the heartbeat anywhere. It should have been at this time that I would be worried or scared but honestly, I started laughing. Annalise has ALWAYS been one ornery girl. Every time we really need to hear or see her, she does her best at avoiding the doctor. After reminding the doctor about that, within the next couple seconds the doctor put the Doppler clear down on my left hip. The doctor had to position the Doppler at a weird angle and push pretty hard to finally get the heartbeat but there it was. The heartbeat of my funny, bratty girl! 🙂 It was no wonder I had been having random sharp pains in my lower left half for the past week before that appointment! She had found her perfect hiding spot! Man, I love her so much already!

After finishing up with my appointment, Kev and I were on our way back home to pack to head to my side of the family’s Christmas. We spent several days with them eating lots of food, opening presents, playing with my nieces and nephew, and going after Christmas shopping. It was a wonderful time filled with many, many blessings.

One small but significant blessing that happened was Kev and I winning a free photography session. A really good photographer from my hometown was having a contest on Facebook where people were supposed to nominate others who deserve some kind of photo shoot. They were supposed to think outside of the box to people with circumstances that needed to be placed on camera. Several people actually ended up nominating me and low and behold, on Christmas day, the winner was announced. We are SO grateful to be given the chance to do professional pictures! Hopefully all works out to get the session done with our sweet girl!

The other blessing came from my hometown hospital. Every Christmas, the staff at the hospital “sponsor” two people. The people are somehow related to somebody who works at the hospital (which would be my mother for those of you who don’t know). Kevin and I did not know about this until a couple weeks ago when my mom decided she better tell us what was going on. The staff at the hospital raised money to help us with our future expenses for when the time comes for Annalise to be born. We could not have been more grateful and blessed by such a gesture! Thank you SO much to all of you who contributed to that monetarily or through prayers! We are so thankful for you!

Along with that, thank you to everybody who has already contributed money on our GoFundMe page or through gift cards! You all are such a huge blessing to our life and we couldn’t be more grateful for each and every one of you!

Talking about our GoFundMe page – we have hit a little over $500 which means ANYBODY can find our page if you just search the website! This makes it so much easier to share with others! You can search by zipcode (66216), by the title (Hope for Baby Annalise), by the name, (Annalise), or by my sister’s name (Cierra) since she was the one who created it!

The only reason I decided to remind you all about this fundraiser is because reality is starting to sink in. I’m FINALLY in my 3rd trimester!!!! (About time, right? :P) Annalise is going to come soon- who knows, maybe even early- so we have to be prepared to pay for medical bills that aren’t covered, finances while I’m off work and the necessary items for her to live the best life possible. And IF the time comes (which we always still pray for a miracle, cause our God is able-but it’s not always in His plan, that she will make it), there will be funeral/memorial expenses. Because of this reality sinking in, I may have to keep advertising the site. So please don’t get frustrated with me.

Anyways, back to Christmas! The Sunday after Christmas we were getting ready for our Sunday school class. (For those of you who don’t know, Kev is the student ministry associate –aka youth pastor- for the middle school aged kids at our church). Before we split into aged based, gender based groups, we meet as one large group to get the time started. We asked the kids if they had a good Christmas and with that came the question of if they got the presents they wanted. Most kids answered yes and were happy with what they got but there were some that said no, their presents were not “good”. Upon hearing this, we realized that we have never actually told our students what was going on with our baby. What a perfect opportunity to tie in a small lesson! We told them how our baby has a brain disorder which means she won’t live long.

It’s a reminder to all that there are times in your life when you automatically expect that you are going to get a “good” gift. Like at Christmas, you expect to get good presents…things you want or asked for. But sometimes, you don’t. Sometimes, God gives you something else. It doesn’t mean He doesn’t care, doesn’t listen, or isn’t good. He is always good. He always knows what He is doing.

We didn’t expect for our first child to have a rare brain disorder that means she may not live long. We didn’t want this to happen. We didn’t ask for such a good, precious gift to come out this way. But I’m so grateful that it has turned out this way. God knew what He was doing when He chose Kev and I to be Annalise’s parents. He will carry us through it all, whatever happens.

So, remember, sometimes good gifts don’t work out the way we want, but they ALWAYS work out the way God wants. It doesn’t mean they aren’t good. They are always good. It just means that our perception of good isn’t the same as God’s perception of good.

I am SO excited for what this year is going to bring. I cannot WAIT until our first child is born. It will be one of the best days of our lives. And yes, I can say that even with our circumstance. It won’t be easy when that time comes, I know that full well, but because of our hope in Christ, I know that He will get us through. I know that He will take care of her more than we can. His plan is always perfect. God is so, so good.

With that said… for this next year, I pray that you all cherish your moments more than ever. I pray that you have a year filled with many blessings. I pray that you have an attitude of gratitude all year long. I pray that you remember that God is good ALL the time.

Have a wonderful New Year! We love you all!