What Love We Have Been Shown!

Family and friends-

Our little Annalise Hope is 6 weeks old today!!!! I really cannot believe this. Wasn’t it just the other day that I was at the hospital, getting my spinal tap put in to see our little girl for the first time? Was it really 6 weeks ago that our lives changed for the better? Six weeks from the time we thought we would be saying “see you again” to our firstborn

Boy have things changed! And let me tell you, I couldn’t be happier!

Annalise is still doing great! We are 8 days post surgery and are so thankful for the changes we have seen in her. We are so excited to see if changes keep happening as she gets older and to see what all she can conquer with time!

As of yesterday (the 30th), her vitals are still strong, her lungs are clear, and her head circumference has gone down in size pretty significantly. Before surgery, her HC was 56 cm. Yesterday it was down to 47 cm!!!! A factor for the decrease (other than the fluid being gone) is that her skull shifts now. Because the fluid pushed her skull so far out, it’s going to take longer than normal for her skull to fuse together. So right now, she has a misshapen head that is easily movable.

The other huge change is her weight! The day after surgery she weighed 9lbs 7oz. Yesterday (using a different scale than normal which could alter the validity) she only weighed 6lbs! That loss is all the weight from the fluid!!! We know this because she has gotten chubbier, is finally out of preemie clothes (definitely a sad moment taking her preemie clothes out of the dresser and storing them away), and she’s still eating perfectly fine! It’s crazy to think her head had about 3 POUNDS of fluid in it! 😳

We are so in love with all the different facial features she makes and how alert and happy she is! Now, before surgery she was always content and happy as well but it’s just so reassuring seeing her happy post surgery.

Next week is when we go back for her checkup/follow up with the neurosurgeon and her pediatrician. This is when she will get her stitches taken out as well! Hopefully everything checks out at these appointments!

Those are the only updates on our little sweetie since last time! Everyday is about the same with her and we are so grateful for that! She continues to amaze us with how well she is doing and how much change is taking place! (Even her body temperature is doing so much better! She is usually always wearing a onsie and a sleeper but she hasn’t even worn a hat in a while here at home! When we brought her home from the hospital, she was always in 4 layers so we have definitely progressed since then!)

Now for your viewing pleasure… Here are some updated photos of little miss:
If you saw the picture of Annalise in her little sweater dress above and thought it was adorable…. Wait until you see her in her Easter dress!!! 😍

I’m so excited that she gets to celebrate her first Easter with us and our church family! It’s a beautiful holiday that means so much to us.

The only thing I can say is:
What love we have been shown!

That statement holds true for so many different reasons for me. Most importantly it’s about Jesus’s love for us. Jesus dying on the cross for our sins is something I will forever be grateful for and will never forget. Another reason this statement holds true is clearly regarding Annalise Hope. We have been shown so much love by having her in our lives. Doctors told us she wouldn’t be apart of our lives for more than an hour and here she is, 6 weeks later. God has shown us so much by giving her to us. Not only that but the love we have gotten from family and friends is incredible! She has brought us a love that one cannot even begin to describe until you go through it yourself. It’s a beautiful thing and I am so incredibly honored to have this special girl in my life.

Anyways… I hope y’all have a wonderful Easter! Remember to celebrate that you are free because of Him!

Love you all!

(www.gofundme.com/hopeforannalise)

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March 23rd- Biggest Day Yet

Family and friends-

I am SO excited to say that Monday went so well! It was definitely Annalise’s biggest day of her life yet.

Sunday night I was already freaking out because she had to stop eating formula by 1:30 AM. … and then she could only have clear liquids from 1:30 AM until 8:00 AM. This last weekend Annalise’s appetite skyrocketed. She was eating ALL the time and SO much. I knew that it was not going to be a fun night- especially since she has finally learned how to cry! But…. Funny how anytime I am worrying or freaking out about something, it always goes the other way. She slept through most of the night, only waking up at 4:30 and then 7:30. We had to be at the hospital by 10:30 for a surgery time of “around” noon.

After we got to the hospital and checked in, we waited to be called back. At about 11:10 AM, we went back into a room to check her vitals and get her ready for surgery. For the next hour and a half, we waited and waited. The neurosurgeon finally came into the room seeing if we had any questions before the surgery and went through everything with us again. Then his nurse came in at about 1:00 PM to lead us back to the area where we had to drop her off and say our goodbyes. That was definitely the hardest time for me…. Watching the nurse take her away, feeling so helpless. I may have cried a bit.

We were then led to a different waiting room to stay for the duration of the surgery. At about 1:55 PM, we were called to step into a room and answer the phone for our first update. The nurse called and said that Annalise went under just fine, had 2 IV’s in place (in case one of them didn’t work since her veins are so tiny) and that they had just made their first incision. Everything was going great so far!

Then 2:55 PM came around…. We were called back into the room to meet with the neurosurgeon because the surgery was done!! Once we were in the room, the neurosurgeon walked in and the first thing he said was, “Well…she has a really bad haircut…. but everything went great!” He told us about where the incisions were and how big they were and just went over any questions we had thought of during the wait. After we got done talking to him, we went back out into the waiting room for the longest wait yet. We had to wait for Annalise to wake up from the anesthesia before we could go back to her room and see her.

Finally at about 3:55 PM, we were told to get our things and go to her room! By this point, we were SO ready to get back there and just give her lots of kisses! Once we got to her room, the nurses told us how she was doing, took her vitals again, and answered any questions we had. As soon as they were done with that, we couldn’t help but get her into our arms.

Daddy went first and as soon as she got into his arms, she let out a whole bunch of smiles. It was the most precious thing ever. It was SO good to see our little girl still smiling right after major brain surgery.

The rest of the night went so well. She slept through most of the night, but when she was awake- she was SO bright eyed and smiley. Around 8:00 PM that night was the first time she took a bottle and kept it down. She was going to the bathroom like she was supposed to and dirtying her diaper. She slept through most of the night, without having to take more pain meds! She was such a trooper and so strong!

 

In the morning, the neurosurgeon came in to check on her and take off her dressings! He said everything looked great and that meant that we could go home that day! My only concern though was that she was still on an IV and wasn’t taking a bottle that much. So we took her off of her IV around lunchtime and waited until later that afternoon to leave. This was so we could make sure that she was eating okay before we left. She apparently wanted to show me up and ate the most she has ever eaten that afternoon. Finally at about 4:45 PM that afternoon, we left to go home.

Last night went just as well as everything was going in the hospital. She spent half the night in her crib (which was the first night she has ever been in her crib because of her body temperature problem) and did great!

 

She has been eating so well since we have been home and keeping it down as well! Our nurse came over around 11 AM this morning to do her post-op checkup and all of Annalise’s vitals were great! Her weight has even gone up to 9lbs 7oz!!!

Overall, Annalise has been doing great… not really showing any pain. She does get a little irritable and distressed when she’s hungry or trying to do her business but I think that is expected after surgery, let alone with a baby in general. ;P Otherwise, she is her normal happy self who loves bath time! 😛

 

Now that I went through the basic, boring stuff… let me tell you about all the changes we have seen in just one day post surgery!!!

When we brought her to the hospital, she was still wearing preemie clothes that were still a little bit too big on her. When we were packing up to leave the hospital, we put the preemie clothes on and they were too small! Her long, super skinny body had turned into a nice size. You could immediately tell that the fluid in her head was getting through to her body within one day. She even has little “fat rolls” on her thighs now! SO CUTE!

Understandably, her head is completely different now. Her hard, heavy head is now not as heavy and is super soft. Picking her up for the very first time after surgery was SO weird because we had gotten so used to a hard structure. We slipped our hand under her head to pick her up and our hands literally caved into her head. The easiest way to explain is that her head feels like a sponge. You can press almost anywhere on her head and it goes down a little and bounces back up. This morning, it was even worse. When we picked her up, we could feel her skull bones moving. It is definitely something we are going to have to get used too. Luckily, the neurosurgeon told us that the part of the brain that tells her skull to fuse and go back together is there but that it would just take longer than normal to get there.

Because the pressure is off of her head, you can see changes in her face now. Her once very prominent veins in her forehead aren’t as protrusive now. Her eyes are not as sunken in and not as bulgy as they used to be. Along with that, she is a lot more alert and attentive than she used to be. She can keep her eyes up for longer periods of time and is always looking around now!

Another change is that she is A LOT more vocal now. She is CONSTANTLY making noises. When she is just lying down, she’s making noises. When she’s sleeping, she’s making noises. When she is eating, she is making noises. When she is hungry… boy does she let you know now!

One of my favorite things now is that she can wrinkle her nose and forehead!!! It is seriously the most adorable thing seeing her forehead wrinkle. It really is the small things that you don’t really think about with “normal” babies that can bring so much joy to us!

And if you thought she had a lot of facial expressions before, you should just see them now!!! We may be obsessed…. And we may have a lot of pictures to try and capture these faces. 😛

 

Overall, we are so excited to see such changes within just one day! We can’t wait to see what else is going to change/improve over the next days, weeks, months, and years to come.

One of the things we haven’t mentioned is that because we decided to go through with the surgery, we can no longer be on hospice. Hospice is considered part of the comfort care plan so we had to switch to “home health”. Because of this, we no longer get formula and diapers provided for us. Also, we may have to pay a copay every single time our nurse comes to our house for her normal routine checkups like we have been doing (that is up to Annalise’s insurance if they will pay that cost or not and we have not heard back from them yet regarding this). Because of these reasons and the fact that we want to be able to stay at home with her and do everything necessary to give her the best life possible, we still have our gofundme page set up. (http://www.gofundme.com/hopeforannalise) We appreciate every little thing SO much.

But most importantly, we appreciate your prayers. Our new journey with little Miss Annalise is just beginning. We are so ready to see what all she can do and what else she can prove the doctors wrong on! 😉

She is our fighter (who has God sustaining her) and we could not be more proud, honored, and blessed to be apart of her miraculous story.

Thank you to everyone who has sent positive thoughts and prayers our way over the last several days! They were definitely felt and greatly appreciated.

 

Miss Annalise wants everyone to know as well how happy she is that you all have been praying for her!

Thank y’all again and I can’t wait to update you when Annalise reaches even more new milestones!

Surgery Time!

Well family and friends-

Tomorrow is the big day!

Annalise goes in for her shunt surgery in the morning. We have to be down at the hospital by 10:30 to meet up with the surgeon. Surgery time can fluctuate but we are going to guess it will be around noon.

Am I nervous? Yes. Terrified? Yes. Am I prepared to bawl my eyes out tomorrow when they take her back? Yes.

But luckily my all time favorite verse applies so well:

“So do not fear, for I am with you. Do not be dismayed for I am your God. I will strengthen you and help you. I will uphold you with my righteous right hand.” Isaiah 41:10

Without my Savior, I would not have comfort or peace going into tomorrow and I am so thankful for a loving God who is always with me…One who can provide me with peace going into such a difficult situation.

Her surgery is expected to last a couple of hours and then about an hour of wake up/recovery time after that. After the wake up time is when we are allowed to be with her. We are scheduled to be there at least one full day so they can monitor the shunt to make sure it’s properly working.

We ask for prayers going into tomorrow and for the surgery itself. We also ask for prayers for a quick recovery afterwards.

We will update y’all as best as we can in the next few days but I can’t make any promises that I will have a full blog ready on Monday :p

We love you all and are so grateful for all the prayers headed our way.

We are so excited to start this new journey with our sweet Annalise and so excited to see where life leads us after surgery!

Decision Time!

Well family and friends… it is about time to update y’all again! 😉

Last Sunday, we took our little one to her FIRST church service! It was the first time getting out of the house (besides doctor visits). She absolutely LOVED listening to the worship music! And despite our pastor saying he puts babies to sleep when he preaches, she stayed awake and attentive the whole time. 😉

 

Annalise is still doing so well! As of yesterday (the 11th), she is now an 8lb 7oz baby! She is finally gaining weight at a good rate! 🙂 Now, we don’t really know how much of that weight gain is just from her head… BUT! Her cheeks are definitely getting fuller so we know some of it is going to her body. Her vitals are still going strong, lungs still sound clear, and she is still eating and breathing on her own! Annalise still shows no signs of pain or discomfort and is still our super happy, smiley, funny baby!

This week has been such a beautiful week of weather that the last couple days, I have been taking Annalise outside for small amounts of time. The first day we sat out on our patio, she loved listening to the birds chirping. This was her facial expression the entire time we were outside:

 

Yesterday, when we were sitting outside, she was just so bright eyed and awake…. listening to the birds and the kids playing hide and seek. I think she likes being outside! 😉

 

We even took a nap on the couch next to the open window yesterday. And when we woke up, she was so happy. Just look at these “selfies” I got with her! (Don’t mind my “new sleepy mom” look!)

 

So, this past week has been a very good week for us. The only other major thing that happened this past week is that we finally have come to our decision!

So the answer you guys have all been waiting for is finally here!

Annalise Hope is going to Children’s Mercy tomorrow (the 13th) to get an MRI done. This will tell us just how much brain she does have and will allow the doctors to see where in the brain they should put the shunt. Yes, I said it. We are going forth with the surgery and going to have the shunt put in.

Although putting my precious baby girl through a surgery is terrifying and scary, especially when she is not showing us any pain or discomfort, we feel it is the right thing to do to help her live the best life possible.

What is stopping us from stepping out in faith and seeing if God can perform another miracle for our little girl anyways? Who is to say that her brain won’t develop anymore once the fluid is gone?

Annalise has been such a fighter for her first 3 weeks of life anyways that we know that she will continue to be a fighter through brain surgery! Now- I may be a huge nervous wreck on that day but I know that God is right there with us and He will get us through it. He has been the one guiding us so far and He is the one who has been sustaining her. He always will be until the day He calls her home.

We are so blessed that we have already gotten 3 weeks with our Annalise and we have this hope that God will continue to let us have Annalise in our lives for a while yet.

With that said….prayers are appreciated in the next few weeks to come. Like I said earlier, her MRI is tomorrow. Next week we go in for pre-testing and then Monday, the 23rd is her surgery (that is the earliest they could get it in)!

We are so excited to see what the future holds for our special miracle! We know that it may be a long, tough road ahead of us but we know that with God, it will all be okay.

On a final note….

Because Annalise is still with us and we don’t know how long she will be, what complications she may have from the surgery, what disabilities she may end up with, etc., etc., we still have our GoFundMe site up and running (http://www.gofundme.com/hopeforannalise). This is mainly because we want to be able to stay home with her for as long as possible and give her the best life possible.

With all of that said… we are so incredibly blessed by all of the support we have been getting from y’all! We are so thankful for the thoughts, prayers, gifts, donations, and food that has been brought to us! We cannot even begin to explain how grateful we are!

We will continue to keep you updated on our sweet Annalise Hope!

We love y’all!

God bless!

387 hours!

Hello my wonderful family and friends!

I cannot believe it has been 16 days since the birth of our sweet little Annalise Hope! The girl who was only supposed to live for an hour… has now made it for about 387 hours! Talk about a fighter who wants to beat all odds and show those doctors up! 😉

-Side note- for those of you who don’t see my Facebook…here is Annalise’s one-week birthday picture from last week:

 

Now back to business 😛

Last Friday (the 27th) Kevin and I went to Children’s Mercy to meet up with all the different specialists and doctors to talk about this new diagnosis and about the possibility of a shunt. We didn’t necessarily learn anything new about hydrancephaly besides from what we already heard a couple days before. They mainly were discussing the “pros and cons” of doing a shunt and not doing a shunt with her 2 conditions being taken into consideration.

I find it kind of…ironic(?) that every time we meet up with the doctors, they can’t ever explain why things are happening like they are. They can’t give us direct answers because she is surpassing all they thought she could do. They can’t inform us of how things are going to go or what is the best way to treat Annalise from here on out.

The thing is….

We know EXACTLY why things are happening like they are. We know exactly WHO is in charge of Annalise’s life and what she can and cannot do. We have always had our hope in the Lord and knew that His will would be done no matter what. We cannot even begin to explain how grateful we are that God has allowed us so much time with Annalise.

Anyways…we understand that the doctors are here to try and help us. We understand that they are scientists and go by the books. We also understand that they will never be able to tell us how long we will have Annalise in our lives. This is her story…written by God alone. And let me tell you…I think it’s a beautiful story so far. A story of grace, hope, faith, trust, love, healing, compassion…I could go on and on but I will spare you. 🙂

But as of right now…Kevin and I are in the process of making a huge decision. A decision we never thought we would have to make because we weren’t planning on bringing a baby home with us. Ultimately, we have to decide which path of life we want to put Annalise through. Either we don’t put a shunt in and live life like we have been…using palliative care and making her life as comfortable as possible. Or we put her through a risky surgery to help drain the fluid building up in her head to relieve the pressure.

There are so many pros and cons to both paths and we are trying to sort through both options as best as we can. We are trying to REALLY think through both options and what all that means for us as a couple and us as a family.

If we were to go through with the shunt, the only purpose and reason for it, is to drain the fluid so her head will stop growing. (Let me stop right here and explain something so no one is confused. Annalise has TWO diagnoses- hydrancephalus (the brain not fully forming) AND hydrocephalus (extra fluid in the brain). The shunt is only here to help with the hydrocephalus. It does not change the diagnosis of hydrancephalus.) According to the doctors, even though there is some brain tissue now, doing the shunt will not change anything neurologically. The tissue will not form back and the brain will not all of a sudden grow to what it is supposed to be. But at the same time, according to them, draining the fluid will give her “the best chance of developmentally growing”. They say she will never be able to walk, talk, or do anything of that higher cognitive processing stuff though. Doing shunts is very common nowadays and most of the time they work but there is a 30% fail rate. There are so many risks to doing the surgery- including infections, the device failing, clogging, etc. The really bad thing about that is when something happens, you have to go through another surgery to take out the shunt, treat whatever is wrong, then do another surgery to put a new shunt in. So one “little” surgery could turn into 3 or more for the rest of her life. There’s a greater chance that she would have to spend the rest of her life in the hospital instead of at home with us. Do we want to risk that and put our precious little girl through all of that?

On the flip side…not doing the shunt…means we continue what we have been doing…. which is loving her and comforting her as best as we can. She has never shown us any indication of pain so far. This is why making this decision right now is so incredibly hard for us. If she were in pain, then I think the answer would be clearer for us. They did say that if we chose this path though, there are medications that they can give us that would ease her pain. The only real “con” to this way is that her head will continue to grow which could make it difficult to take care of her. If it gets too big or heavy, it may take 2 people just to hold her head up or move her. How uncomfortable would that be for her?

But I’m going to let you in on some news. As I mentioned before, we have a hospice nurse that comes to our home 3 times a week. Each time she comes, she takes Annalise’s vitals and measurements. When we were discharged from the hospital, Annalise’s head measured 46 cm in circumference. Last week when we went to Children’s Mercy for the conference with all the specialists, her head measured at 49.5 cm. Monday when our nurse came, it measured only 49 cm. It is still only measuring at 49 cm. How is it possible that her head has gone down in size? Initial reaction…. They aren’t measuring in the same spot every time. That could be…but I like to think there’s something else going on. 😉 They think maybe the swelling is going somewhere else on the head instead of where they have been measuring. That’s a very real possibility as well but still…

Either way we go, there is no clear indication that one will make her live longer than the other. There are risks and complications to both paths and we have to make the decision of which way is going to be the most comfortable for her. We don’t necessarily want to make the decision based on which one is going to make her live longer anyways…. God already has her days numbered. He is going to see through it no matter which way we choose.

We will always have hope that our girl will continue to fight and prove everyone wrong. We will always believe God can and will, if according to His will, perform a miracle…. more than He already has. During this time, we just ask for continued prayers. We ask that with whatever decision we make, you support and understand that we are doing it for the benefit and comfort of our sweet Annalise.

With all of that said, Annalise is still doing great! Her vitals are still going strong, she’s eating well, and she is gaining weight! On Wednesday, she was up to 8 lbs. even!!!

On Tuesday we celebrated her two-week birthday. I put her in the dress she wore the day she was born and took a picture so we could see the difference just two weeks makes. Just look at the difference!

 

On Wednesday, a photographer from Lee’s Summit (who was so generous in gifting us a newborn session) came to our home and took Annalise’s pictures for us. Here is a small sneak peak of how the morning went!

 

(Thank you SO much Amy (http://www.amyleephoto.net) for doing this- we love them!)

Overall….I guess you could say our life has been crazy good? 😛 We never expected that we would be here at home, 2 weeks after our C-section, with a baby. It has been such a joy experiencing parenthood. It has been such a blessing to enjoy this time with our sweet little one. It has been so sweet to see Kev as a daddy. It has been incredible to see and experience all the support from our family and friends. It has been a blessing to have people so willing to help us out and bring us food. But most importantly, it has been such a treat to see God working in the lives of Annalise, us, and everyone around us. There is nothing greater than seeing God work and being able to glorify Him through EVERY situation. Relying on Him and trusting His will (for not only Annalise’s life but ours as well) has been the only way to go. Without that, we would be in a world of hurt, anger, depression, and so forth. I am SO appreciative of having such a loving, gracious Father to help us through all situations.

We want to thank each and every one of you for the thoughts, prayers, gifts, and food we have received over the last several weeks. We are so, so blessed by it.

i can’t wait to see where our unexpected journey leads us next! I just know God is going to continue to make Annalise’s story even more amazing than it already is!

We love you and can’t wait to share even more with you in the days and weeks to come!

God bless!!!