A New Journey?

Hey family and friends!

We are still overwhelmed by God’s goodness to us! We cannot believe God has allowed us so much time with our beautiful little girl! She is 8 days new and still going so strong!

I am just writing to give y’all a little tiny update!

Yesterday, we took Annalise to her one week checkup. It was the first time we got to leave the house! It was kind of exciting being able to pack a diaper bag (even if it was for one little trip to the doctor). Of course I had to document the first trip so here you go! 🙂

 

We were so proud of her! She did so well and all of her vitals were perfect. It was during this visit that we talked about doing an ultrasound on her head just to re-look at things. Now that she is out of the womb, they can clearly see what is in her head.

So….after thinking about it and praying about it….we went to Children’s Mercy today and did the sonogram.

We were in for such a shock!

First, Annalise got her blood drawn. I was a nervous wreck. She never had any blood drawn or any type of “pricking or prodding” done at Shawnee Mission because she wasn’t expected to live. So we didn’t want to spend the time doing that instead of having her with us. Needless to say, having her first needle put in today was terrifying. I didn’t know how she would react but she was such a trooper! She barely even flinched. She is such a tough fighter.

Then we went back to do the sonogram. After the lady looked around for awhile, she went and got the radiologist. The radiologist first asked us what we were told she had. We explained how she was diagnosed with alobar holoprosencephaly and hydrocephalus. He (the radiologist) then told us that she does NOT have HPE.

Say what?!

So for the past 18 weeks we have been trying to digest and understand all we could about HPE just to find out she doesn’t have it?

Boy, are we on a roller coaster ride!!! (Where can I get off?)

Come to find out, Annalise is now diagnosed as having hydrancephaly. This is where the brain’s cerebral hemispheres are absent to varying degrees. So from what we understand right now, Annalise does have brain tissue and her hemispheres. It’s just that the ventricles, where the fluid is stored, were larger than they should be when formed. So the brain had to form around the ventricles in a sense. Because of this, the fluid was building up so much that it just pushed the tissue to the outer rims. All that to say, the brain is somewhat there, it just isn’t fully formed. Her brainstem and cerebellum are completely developed though which is why she is doing so well.

We actually left Children’s Mercy feeling pretty hopeful because the radiologist made it sound like she could live but would just have learning disabilities. But then we got home and got a call from our pediatrician. She told us that the outcome is still going to be the same. But some children with hydrancephaly can make it for up to a year. We then asked about draining the fluid and if that would help. She told us that they could put a shunt in to where the fluid would drain into her body and she would just pee it out….but doing that means undergoing surgery. Our pediatrician told us that a lot of babies with this condition who undergo this surgery end up getting an infection from it….and that this infection usually ends up making the baby pass.

So here we are on this NEW unexpected journey…trying to figure it all out, AGAIN!

Am I completely overwhelmed, exhausted, and shocked? Yes. Do I still believe that this is all part of God’s plan? Yes.

Just like Kevin said yesterday: God is sustaining her and will continue to do so until He calls her home. God has numbered her days and He is the only reason she (or any of us) is alive today.

We are so incredibly grateful for the days we have had with her and the ones yet to come.

And honestly….we know ultimately that one day we will see her again and she will be without pain, without her conditions, and she will be with the Savior. 

But for now, we just ask for prayers in the coming days as we find out more about this new journey.

We love you all and can’t wait to share more of our little fighter with you!

February 17th- The Best Day of our Lives

Wow! What an incredible week it has been! There is SO much to say and talk about! I’m just going to admit it right now… this will probably be the longest blog post you will ever read in your life! Lol 🙂

Let’s just go back to when it all started.

My last day of work was the 13th. I did this so that I had the whole week of my C-section off so that I could get prepared and have everything done. So on Monday, February 16th, I did a lot of errands that needed to be done before we were at the hospital that weekend. For Tuesday, I had planned on finishing cleaning up the house and doing the laundry that needed to be done badly! It was the day to finally get everything packed and officially ready to go. Wednesday was going to be a relaxing day and Thursday family was starting to arrive. Then Friday morning, we would get to see our beautiful little Annalise Hope.

Boy was my plan not the case. Let Your will be done, Lord…right? 😛

On Tuesday, Kev came out to the living room where I was sleeping (the recliner was much more comfier than the bed that night). He woke me up at 9:00 AM. I grudgingly made my way to the bathroom. I had been trying to get over a congested nose for a week or two and since I had just woke up; it was all trying to come out. So as I am in there coughing, Kev asked if I needed anything. I asked him to get me a cup of water. As soon as Kev rounds the corner into the bathroom, I cough…. and the floodgates of heaven were opened.

Now, remember how I said Tuesday was laundry day and packing day? Imagine the two of us: running around our apartment, getting dressed, trying to find everything that we need to take to the hospital, getting it all packed…all while my body is just gushing out water. I went through 3 pairs of pants before we made it to the hospital. It was that bad.

But finally around 9:45 that morning we made it to the hospital. They immediately took me back so that they could put me on monitors and get prepped for the day. Kev was hurrying to make all the phone calls to family members he could. Because I wasn’t having any contractions or any other signs of labor, we could take it slow. Fortunately, the doctors were okay with us waiting as long as possible to do the C-section so most of our family and our photographers could get up to the hospital that day.

By 2:00 pm, my family and the photographers had made it. It was go time. Whether we were ready or not, it was time to undergo surgery…. the surgery that will forever change our lives.

It was around 2:45 pm when the doctors took me back to put my spinal tap and epidural in. Once that had kicked in, they let Kevin and Megan (my photographer) into the OR. From that point on, everything was so surreal. I didn’t even know when they started cutting me open. It felt like one minute had passed when all of a sudden the nurse was standing next to Kevin and I telling us to look at her because she had our baby in her hands. We didn’t even know she was out when they came up to us. (This is because Annalise can’t cry because of her condition. So she didn’t really make a noise at first.) They hurry and cleaned her off just enough to where I wouldn’t be completely covered and took her measurements. She was born at 3:06 PM weighing 7 lbs. 15 oz. and was 20.5 inches long! This is when she let out her first “cry” which sounded like a dog yelping. After this is when they put her on my chest for the skin-to-skin contact.

Kev and I had a few minutes with her like that while they were sewing me back up. Because we didn’t know how long she would live and the doctors believing that she wouldn’t live longer than an hour, our family was right outside the OR doors. They were waiting in the hallway, so that as soon as the doctors were done sewing me up, they would take me into a room to where all the family could see her while we did the recovery process.

Shawnee Mission spoiled us. They allowed us to stay in a labor and delivery room our whole stay so that family could always be in there. They brought everything to us so that Annalise never had to leave our sides. The NICU nurses came down to our room every hour to check on Annalise’s vitals. The 3 things they checked every hour were her temperature, heart rate, and respitory rate. Maintaining body temperature is a huge problem for Annalise. This is because she is a preemie but also because of the size of her head. You release your heat from your head, and since hers is so much bigger than normal, she has more surface area to give off heat. So she releases her heat faster than a normal baby. Therefore, she has to be dressed in layers upon layers with a hat to help maintain her body temperature. Otherwise, she would have to stay in an incubator to keep warm. Checking her heart rate and respitory rate were also very important because this is how they told us we would know when she was passing.

All night Tuesday, Annalise had “normal” vitals considering her size, age, and conditions. For a normal baby, she was just under the average for all her vitals. But then Wednesday came and her vitals improved. She reached the normal levels for a preemie baby. Her heart rate was anywhere from 120-150, her respitory rate was anywhere from 30-45, and her temperature stayed around the 97-98 mark. She was doing so incredibly well!

We were told that when she came out, she wouldn’t know how to breathe or swallow on her own. But since she was doing so incredibly well with breathing, we wanted to see if she could swallow as well. We started off with using a syringe to put just a drop of formula on her mouth to see if she would lick it up. When she did that, we moved on to putting just the tip of the nipple in her mouth and dropping a few drops in. She could handle that so that is what we continued to do. She would eat about 1-2 milliliters every hour by doing it that way. But then on Wednesday night, something changed. Kev and I forgot we had made dinner plans with a family from church. When they called around 6:30 that night asking if we were still coming over for dinner, we felt awful for not letting them know what was going on. But being the sweet people they are, they just packed up their dinner and brought it over to the hospital. While they were there, they were holding baby girl when she got hungry. The mom was okay with trying to feed her so we gave her the bottle. Before we could even tell her how she ate or that she doesn’t eat very much, she stuck the whole nipple into Annalise’s mouth. Annalise chugged an entire ounce (30 ML) of formula!!! That was more formula than she had drank in her entire life! Ever since that night, Annalise started drinking about 1 oz. every 2-3 hours.

Throughout the rest of the stay, Annalise’s vitals stayed normal and she continued eating well. Doctors were so impressed with how she was doing. You could tell all of our NICU nurses were in love with this miracle baby. They always just wanted to stay in our room and hold her. We didn’t really have a problem with this during the night! 😉

We talked with one of the neonatologists several times to try to better understand maybe what was going on with Annalise and why she was living longer than expected. We knew going into this that Annalise has a brainstem but that the brainstem would have nowhere to send the signals. But what we found out is that the brainstem alone can make Annalise breath and swallow on her own. The doctors just thought going into it, that the pressure in her head was so large that it would be cutting off all necessary means for the brainstem to work. So that is the conclusion we have come too. The pressure and fluid in her head is not at a large enough volume to where it is cutting off the brainstem from working. Once the pressure in her head becomes so large, it will put pressure on the brainstem and make it stop working. This will probably be her cause of death…unless she aspirates before then. But with how well she is eating and swallowing, we don’t see her aspirating anytime soon.

By Thursday night, we were told that we would be able to take her home with us when we were discharged because she was doing so well with her vitals. What a huge change of events! We were so not prepared to bring a baby back home with us! The only thing we had was a crib and a tub full of clothes from my sister. Shawnee Mission helped us out a lot by giving us enough formula and diapers to last us awhile and giving us a car bed. Because Annalise is a preemie and her head is so heavy, she can’t use a regular car seat due to her head coming forward and cutting off her circulation. So all day Friday, my mom was running around town buying everything that we would need come Saturday when we got to go home. Thank goodness for mothers!!! (Mom- we cannot even begin to thank you enough for everything you did for us this past week! We love you.)

All of a sudden, it was Saturday morning. We were packing up our hospital room. Going into that week, we thought we would be packing up the room and going home without a baby. But there we were, making sure we got everything we needed for a baby to live with us. We were going home with the most special, valuable, perfect gift we could ever receive.

I remember sitting in the backseat with Annalise while Kev drove us home, just repeating over and over again- “This is really happening. We have a baby with us…she’s going home with us”.

Going home was a very exciting but frightening time for us. It was incredible that we would even be given the chance to take her home considering what we were told. But at the same time, we didn’t have the comfort of having nurses attend to her every couple hours to make sure she was okay. We did enroll into a hospice program for her though to help make the transition just a little bit easier. Annalise will have her own “case manager”/nurse which will stop by our apartment 3 days a week to check her vitals and see how she is progressing. It is completely up to us how many times we want the nurse to come during the week. Right now, because Annalise is doing so incredibly well, we are comfortable with just 3 visits a week. Who knows, maybe she will only need to come once a week before too long because Annalise starts proving that she’s a bigger fighter than she already is!

We absolutely love being at home with our special fighter. She continues to amaze us daily! She has been doing so well here at home and we couldn’t ask for anything more. Because she has a harder time maintaining her body temperature, she cannot be left alone for long periods of time. Being held gives her some of our body heat to help keep hers up so that is what is recommended. So sleeping in her crib at night is almost impossible because she gets too cold. I am definitely not complaining about this though because snuggling my baby girl all night long is just what I need! 😉

She is definitely our miracle baby who wants to show everyone that there is Someone greater in charge of life. She is ready to prove that she’s a living, breathing miracle that can bring glory to God anywhere she goes. God is the one sustaining her life and we couldn’t be more thankful for these moments with her. We are so overwhelmed by God’s goodness and so incredibly thankful to God for all of His goodness to us. She is truly an inspiration to us all. I know I am so incredibly honored to have Annalise in my life. She has taught me so much about love, joy, hope, faith, trust, perseverance, and the sovereignty of God (among other things) in just 6 short days. To God be the glory!

I cannot believe tomorrow she will be ONE WEEK old!!! You better believe we are going to celebrate at 3:06 PM tomorrow afternoon! And yes…there will most likely be a picture or two on Facebook 😛

We want to thank everyone for the thoughts, prayers, cards, gifts, and food being delivered to us. We are so blessed by each and every one of you. We are so grateful and appreciative of everything that is being done for us. We love you all.

With all of that said, I am going to leave y’all with a bunch of pictures of our sweet, precious, miracle. Hopefully she will bring as much joy and love to you as she does to us.

 

True Love

Hello my dear family and friends!

I just wanted to tell you a quick, funny story! Yesterday (Wednesday the 11th), I was at my normal checkup. My OB got out his sound doppler to check the heartbeat and after going all around my stomach, he said he was going to send me to go get a sonogram to see if she was still head down. The heartbeat was a little faint but sounded “high” to him…like she had flipped to where she would be breeched. Because we are doing a C-section, it wouldn’t matter if she was head down or not. He just wanted to check because it will prepare him for what he will see first. 😉 And apparently, it will tell him exactly how to make the cut come surgery time.

Anyways….Kev and I go back to the ultrasound room to have a quick look. Luckily, she was still head down so everything turned out fine. Fortunately, we always have the same lady who does our ultrasounds, so she always tries to get Annalise to show her face whenever we have one done. This is because she knows we haven’t seen her face since we were 18 weeks along. Anyways, as she was pushing the device into my stomach to get Annalise to move to where we could see her face, Annalise just decided to kick her right where she was holding the device!!!

I could not help but laugh at how ornery Annalise is! She’s so perfect. I can’t help but think of her as a fighter. Not letting us see her face until she is out. Proving the doctors wrong by not dying in the womb and doing so well in there. Those are just two of the main things that make her a fighter and I am sure that once she is out, she will amaze me even more!

Here’s a random thought I just had. I know how much y’all love these! 🙂

People always say you don’t know what love is until you have a child or that you’ll never know true love until you’re a parent. How many people truly believe that? Believe me, I fully understand the different kind of love a mother feels for her own child. But how can one sit here and not realize that we have been shown what true, real, genuine love is before?

My mind wanders to the passage in 1 John 4:7-21. This passage is reminding us that God is the source of all love; God models what genuine love is; and God commands us to love one another. God is the truest and most pure form of love. He is the embodiment of love. If someone wants to know what love is, then look at God. His character and his essence are love.

And since God is love, love comes from God. God’s love is a model for how and why we are to love. God has loved us in a way that has given us life. The greatest love is Christ dying on the cross for us. John 15:13 says, “Greater love has no one than this, that someone lay down his life for his friends.” Because Jesus died on that cross, we as believers come into a world where love is received and expressed. In essence, human love flows from God’s own love.

I guess what I am getting at is this: God is the ultimate example of love. It doesn’t take having a child or becoming a parent to know what true love is. We have a God whose being is love. And I’m definitely not saying that the love parents have for their children isn’t real or genuine, but that we have been given something that trumps all other loves- this is the love of God for His people.

Anyways….random thoughts over!

To end this post I’m just going to say that tomorrow is going to be a bittersweet day for me. It’s my last day of work until the end of April. I cannot believe how fast time has gone. Next week, I will be getting everything ready, going in for my last doctor appointments and lab work, and then walking into the hospital at 5:30 in the morning on Friday to get ready for the birth of our baby girl. We are so close!

I can’t wait to tell y’all how our unexpected journey ends up next week. I know y’all are going to be waiting on the edge of your seats just waiting for an update. 😉 But I promise I will get it updated in due time.

I know I say this almost every post, but we seriously cannot thank you all enough for the prayers and thoughts! We are so grateful for all of you.

We love you all!

The Final Destination

Hey family and friends!

Today we had our checkup and got to do another sono to measure our ornery Annalise! We wanted to see how much she has grown compared to a couple of weeks ago.

Let me just show you how ornery and stubborn she is though! This is the only picture we could get of her:

image

The one small black circle almost directly in the middle of the picture is one of her eyes. She likes to keep her head tucked in to the ball she sits in and always (I mean ALWAYS) has an arm and hand over the rest of her face. But to the left of the eye is her “chubby” cheek. (That’s what the sonographer called it!)

Annalise is doing great though! She got a perfect score on the system they use to track everything. She’s right on track with measurements (except her head of course), she had a good steady heartbeat, you could see her moving well, and you could see her breathing. She’s already head down even!

It still amazes me that she could be doing so incredibly well with everything and not have a fully formed brain. It just proves that our God is an awesome, powerful God. He gives us just what we need. I know that His plan through this all is perfect.

Speaking of plans, our scheduled C-section for February 20th is still a go!!!!! We were told today that even though her head is still growing, we could still have a regular C-section done on the 20th. There are ways around the surgery to where we wouldn’t have to turn it into a classical cut. If her head is too big then they can just make a bigger cut into the abdomen or into the muscle instead of switching to classical and putting more risks on both of us.

We are so incredibly blessed that everything is working out and coming together. We are now 2 weeks and 2 days away from meeting our “little” girl.

Are you wondering why I put quotes around little? Well… Today Annalise measured 6 pounds and 13 ounces (mainly head weight). So, she is putting on about a pound a week! If she continues at that rate, she will probably be around a 9 pound baby on the 20th!

Anyways 🙂 Next week will be my last week of work before I take my maternity leave. I have the week of the C-section off to get everything ready and get prepared for what’s to come. After the C-section I will take the recommended 8 weeks off to properly heal from the surgery. This means that for 9 weeks, I will not have an income. This is part of the reason why my family set up a fundraiser for us- to help with bills while I’m out of work. We are so thankful for those who have already contributed to our gofundme page (www.gofundme.com/hopeforannalise) and for those who have shared it to get the word out! We are also so incredibly thankful for those who have sent us anything in the mail! We are so blessed by all of you!

I have a feeling that the next 2 weeks are going to go by extremely fast. Before I know it, we are going to be walking into the hospital, getting ready to undergo surgery to meet our special miracle. As the next 2 weeks come and go, we ask for continued prayers as our unexpected journey reaches its “final destination”. Why quotes again? Because I know that life is not over. Not for Kevin and I… and not for our sweet Annalise. I find it ironic that when I was taking a shower this morning, listening to the Christian iTunes radio station, a certain song came on. Here’s part of the verse: “I’ll fly away to a land where joy never ends”. I’m so excited that Annalise gets to experience the land where joy never ends and we will eventually meet up with her again in heaven.

The only thing left to say is that our hope lies in such a sovereign God.

I pray that you who are reading this gets to the point in your life, God willing, that the above statement is true for you. There is nothing better in this world than knowing Jesus.

We love you all and can’t wait to tell you how this journey wraps up in the next couple weeks!

Blessings to all of you!