Having Hope

Our amazing pastor preached another great sermon yesterday. It was part of several weeks he's taking on the subject of HOPE. Maybe I took extra good notes, or maybe God is keeping his words in the forefront of my mind this week...whichever it is, I feel I should share my thoughts and how it relates to our present situation.

God has His own "secret purposes" and we are not called to question, but to acquiesce; humbly accept. HOPE - real hope - is a certainty when we know Christ. Hebrews talks about faith being sure of what we HOPE for. If we believe His word, we know that we can hold on tight to the hope we have because He is faithful. Believing He is faithful, even in the face of trials, is having faith. Hope always hangs out with faith. When you have faith, you have HOPE.

Romans says we can rejoice in our sufferings because we know that suffering produces perseverance; perseverance, character; and character, HOPE. And when you have the Holy Spirit, He takes the suffering you are going through, mixes it with the scripture that is written on your heart, and from that creates HOPE.

Until this past Sunday, I didn't really know or understand about HOPE. Oh I knew about hope, and was pretty sure I had some, but because I am able to feel at peace, I can be certain I have this HOPE. Even as I write this, tears are falling, but that's okay. Having HOPE doesn't mean your problems go away. It doesn't mean you won't feel the pain. It just means you know this isn't the end of the story.

Through this experience with Carina, I have been told I'm brave, or that I'm a testimony, and that people are pretty surprised at how strong I'm being. I don't feel brave. There are days I barely get through. It's hard to think of myself as a testimony...you should see me when I drive! And my strength relies entirely on Christ being strong for me, as well as the prayers I know are coming in on a daily basis from our friends and family. But this is just more evidence that I can know I have HOPE: it's obvious to everyone else, even when I am unsure. But just as our pastor said on Sunday, I don't go around telling people I have hope and see if they'll ask me about it. They just do. Sometimes it's even on days when I'm right on the edge of breaking down. And sometimes it's on days when I really need to hear it and be reminded that, oh yeah, this isn't the end of my story!

I am so thankful for our pastor and the wisdom he brings to our church, and to my life. It's funny because, I never thought I would be a permanent fixture at this church. Yet here we are. And looking back, I can see how God has been working in my life for a very long time just to bring me to this place.

And again, I have HOPE.

Breakdown at Build-a-Bear

Today started out very normal. I had a scheduled OB appointment this morning and my sister graciously agreed to go with me and help with Autumn. I also figured I would do some other running around while we were out. I had to register for my epidural, get my glucose test done, and pick up my taxes. While in Sarasota, I thought we could hit the mall for a bit. Since we had Autumn with us, Build-a-Bear was a must. We got there and my sister decided to build a monkey. We had fun building and dressing her up, and Autumn even found a "Wonder Pet" (aka: Zhu Zhu Pet) on sale.
We made our way to the check out and as we were just about to leave, the cashier mentioned to me about a doppler recorder, that we could record the baby's heartbeat and put it inside a bear (or other BAB animal). At first, my automatic "she's just trying to sell me something, tune it out, say no thank you and walk away" reaction began to play, but I stopped the small voice in my head and heard a voice in my heart. This voice said, "This is something tangible that only Carina has. This is something you will be able to keep forever. You need this." The cashier started talking about how it was only $8 and so easy to use...I looked at my sister and copied the 'heart voice' saying, "I need this. It would be something so special that I could keep of hers forever. A way to hold on to her forever." And right before it happened, I knew it would happen and said, "I'm going to cry." I don't think anyone believed me because my sister was asking something about changing the batteries, asking her to show us how it worked...and the cashier was happy to oblige. She told us we should bring it into the store and have THEM change the batteries so we didn't accidentally erase it and what might be better is that we record the heartbeat onto something secure (i.e. the computer or a recording device) and that way in case it did get erased we could easily record it again... I had stopped really listening because my heart was breaking.

I need this.

I said, "I'm sorry," turned away, and let the huge sob escape from my chest. My sister reached over and hugged me as I sagged against her weeping. The cashier apologized for upsetting me. I pulled myself together, somewhat, and said again, "I'm sorry." And then came her inevitable comment, "It's okay! You're going to have a baby!" I smiled a watery smile and nodded, replying, "She's not expected to survive."
I saw her face go pale and her smile faded. She quietly apologized, I shook my head and smiled and said it was okay. We paid for the doppler recorder and left. Thankfully, no one else was in the store.
Normally when I have these moments, I'm alone or only Autumn is a witness. Today, in front of my sister, two underpaid employees, and hundreds of un-stuffed, lifeless animals...Build-a-Bear was privy to a glimpse of grief.

I'm so grateful for my sister and her presence there today. And I am also grateful for the Build-a-Bear cashier who was trying to make a sale and ended up, unknowingly, giving me a great gift; Carina's heartbeat forever.

26 Week Ultrasound

I had my third ultrasound today. We had a really nice tech who supplied us with a plethora of information. I think he may have been nervous because he just kept talking and talking...but he was very respectful, making sure I told him to 'shut up' if he was talking too much. He also was zipping through... clicking photos and taking measurements, all the while saying, "Just a few more..." or "almost done..." Until I finally said, "You don't have to worry about going too fast...I don't mind seeing my kid." He relaxed a little then and we had a nice rest of the appointment. Dr. Baron came in and said the results of this ultrasound showed more increase in the swelling, but it's still progressing slowly. There was edema (fluid/swelling) on Carina's feet this time, which just showed the progression and what we'll soon see more of; swelling on all of her. Her arm and leg bones are all showing to be about 10 weeks behind the normal growth rate, so they are extremely small. Her chest cavity is still the same, and we could tell the heart is taking up the majority of her chest now. She's still plugging along, though, with a strong heartbeat. I'm currently 26 weeks and Dr. Baron said around the 28/29 week mark, the baby's body says, "I need to have a growth spurt" so we should be able to tell in a few weeks if she's going to have any major issues delivering naturally or if we may be looking at a C-section.

I live for our ultrasounds now. Any chance to see my beautiful baby moving around, oblivious to her many problems, showing off and waving to me...she's such a miracle.

Life

Life is precious. Life is sweet. Life is crazy. Life's not fair. That's life. Life's a dance. Life goes on....ooh blah dee.

These recent world events, as well as what is happening with our sweet Carina, have made me think about life more lately. Life begins at conception. So does parenting, but we're talking about life at the moment. Time passes. Some get the chance to really live. Others may live through someone else. Some lives are long. Others barely begin.

Life is precious. I'm thankful for every day I have with my family and especially every second we have with Carina. Some people feel sorry for us because we "have to carry her till whenever." Not me. I'm so grateful for being allowed to carry her till whenever.

I'm also grateful for people who ask about how I am, or how the baby is, because I want them to know she's a real person. She is a part of our family who is special and loved. We don't want to ignore her just because she is sick. For now, she is alive. Full of life. Kicking with every bite I take of something sweet. Bouncing around whenever she hears the church band play together.
I want her to experience as much joy as she can. As much love. As much life.

Life is precious. Her life is precious.

Dedication Sunday

I love my husband. He is not a planner, yet when we decided to do a dedication for Carina, he came up with an entire plan on how he wanted her service to look. Originally we thought we would dedicate her at the hospital when she was born. But in case she didn't survive delivery, our pastor suggested we may want to ensure we get to dedicate her while she is alive. He suggested praying over my belly and dedicating her that way. It made complete sense..just one more thing we hadn't considered. I assumed Ken would want me to handle the plans for the dedication. But when we talked about it, he had come up with a whole plan on his own. I wanted to make sure he was/is involved with this process as much as he wants to be. And anything I could make happen for him, I wanted to make happen. It's so much harder for him to connect with her since he's not the one carrying her. So having him plan this service meant a lot to me and to him.

The thing that struck me the most was that he wanted to have the dedication at the church, with our whole church. I was kind of surprised. I figured he would want to do a small private service, but when I questioned him about it, he said, "They're our family too. They should be there." He was so right. Our church family had been praying for us since the beginning. They have been amazing in lifting us up and because of them, and others, we have really felt like God is right here with us, carrying us when it's just too much to handle.

Ken wanted us to write a letter to Carina together, but knowing we wouldn't be able to read it ourselves, we asked our pastor to read it. Then he wanted to have our pastor pray over me and the baby, including the church in lifting us up, as they've been so faithful in doing. Finally, he wanted the song 'I Still Believe' by Jeremy Camp to be played. We asked our church band if they would handle that.

Our church was in the process of changing locations (and still are), so our last Sunday at the church building we've known for 3 years would be the 27th of February. This was a week after we decided to do the service at the church. Our pastor said he could make it work for us to do it on this date. I have family in several places in the country. A sister in Alaska, and a brother and sister-in-law living in Illinois. I have another sister in Orlando. I contacted all of them, letting them know what our plans were and that, understanding the expense and last minute plans, we would love to have them there if they were able to make it. Someone graciously paid for my sister in Alaska to fly down, and my brother and sister-in-law also found time in their hearts and lives to be here for us and Carina. I could not believe that God had worked it out for my entire family to be at the dedication. It was the first time we'd all been together in 5 years.

During the week before the service, my mom ended up in the hospital with a serious case of pneumonia. We were afraid she wouldn't be able to be at the service. It turned out the hospital wanted to keep her until Sunday afternoon. Thank God for technology! We were able to set up a computer and skype with her in the hospital. She was able to see and hear the whole service. Ken's parents and my Aunt and Uncle were also present at the dedication. The service was beautiful. Our pastor read the letter we wrote. Ken and I wept silently. Our church and pastor lovingly prayed for our precious baby as our family encircled us. And Carina kicked.

The band did an amazing job with the song Ken picked and we were blessed. It was hard. But it was good. And God was glorified.

Thank you to everyone who came and was a part of that special moment with us.

Kristin

Updates So Far

On Valentine's Day this year we had a followup ultrasound. Not the most romantic way to spend this holiday, but oh well. We met with our amazing ultrasound doctor again and she checked out all of Carina's measurements. She noticed that the fluid had, in fact, increased just as she thought. But the increase was not as much as she expected. This wasn't necessarily a good thing. It just meant that the natural process of things would be slow instead of quick. This meant that we could expect 'something to happen' in a few months rather than a few weeks. This news was a little hard to deal with at first. Originally we had been praying that God take her sooner rather than later, but I now realize that was a selfish prayer. His timing is perfect and He wanted us to hold on to her and get to know her. To feel her kick and to (hopefully) get to hold her and look at her alive.

Now our prayer is that we get to do those things. We are praying to have even two minutes with her after delivery. We know she probably won't make it to June--her due date--but whenever she greets this world, we're praying she's alive when she does.

We had a dedication for her this past Sunday at church. I will post separately about that because it deserves to have it's own post. It was such a special time for us and our church. Carina has already been touching our lives and others lives. I am thankful to have been chosen to carry her.

Kristin

January 28, 2011

This blog was started because of our daughter, Carina. In October, 2010, my husband and I found out we were pregnant with our second child. We waited impatiently until January to get our ultrasound and finally the day arrived. I rode with my mother and my husband met us at the doctors office. When we got there we actually got in early so Ken got there after us. We were all settled in the room and the tech showed us our baby. He showed us pictures of her profile and her foot and her head...then he told us it was a girl! We were surprised, but happy! We told my husband he'd have another fishing buddy and he made a joke about having to pay for another wedding. Then the tech said he would check with the doctor to see if she wanted to talk with us. At the time my husband and I didn't think anything of that comment, we were just dwelling in happy thoughts about life with two daughters. My mom thought that it was weird that a doctor may be called in because we didn't have that happen with our first child, but she let the feeling go.
Our doctor came in and we smiled at her expectantly. She squeezed out a smile and stepped into the room. The tech sat back down and started showing us pictures of the baby again while the doctor started talking. "Well, Kristin, there's just no easy way to say this..." My smile froze in place and her voice started sounding fuzzy. I couldn't look at anyone but her as she continued. "As you can see, this little baby has a larger head than we normally see. That's because there is a big section of fluid from here to here," she said, pointing to the screen. "The fluid is not our main concern. If she only had some fluid there, we would be concerned but not worried. The other issues this little baby has is you can see her arms and leg bones are much shorter than they should be at this stage of growth. And her legs are bowing in. This is something we usually see in cases where dwarfism is present." The smile had left my face and I felt the tears falling. Still I only looked at the doctor and the screen. "The other issues here are that we can't see the base of her spine. It seems to be missing. But the main concern we have here is for this little baby's chest. You can see that it's much smaller than it should be. Her belly is big because of the fluid that's there, but her bones are not growing. She has a very strong heartbeat, but what we're seeing is that because her chest is not growing, she won't be able to sustain breath if she makes it to delivery."

IF.

At this point I can't control my sobs and the ultrasound tech silently hands me a Kleenex. I mop up my face and glance over at my husband and mom. My mom is crying also but my husband is white as a ghost. There is silence in the room as the doctor lets it all sink in for us. "What are her chances?" I squeak out. "This little baby has a 1% chance of survival. We don't even know what it is that she has because we've never seen all of these issues all at the same time. I'm so sorry." My husband quietly asks where the bathroom is. He is directed and rushes out of the room. I know he's in shock and I don't blame him for wanting to leave. My mom starts asking, "So what do we do?" That was the question in my heart that I couldn't bear to ask, fearing the answer. The doctor sighed and said, "Well you should take some time to decide if you want to continue the pregnancy." What?? Why wouldn't we continue? I don't understand!! My mind was spinning and I felt sick. "If you choose to continue, we should do an amniocentesis to make sure there isn't also a chromosome issue on top of all her other problems. After that, we just play it by ear." At this point my husband came back in the room, still pale. He looked like he might be sick, or maybe that's why he left so quickly in the first place. Either way, he was asking the doctor the same question as my mom, "What do we do now?" The doctor patiently repeated herself but at this point I already knew I wanted to get the amnio test right away and not wait. Ken thought I wouldn't want to go through that right now but my mom could see in my eyes that I did...even though I couldn't come out and SAY it.
We did the test and the doctor said the results would come in about a week. She also said we could call her with any questions, anytime. On the way out, the tech asked if we wanted our ultrasound pictures. My heart sank and for a millisecond I thought, no...but my mouth said, "Yes." I wanted to tell him he was a jerk for even asking. Why wouldn't we want them? She is our daughter!! It may be the only picture we ever have of her. Just that thought made me start to cry again.
We walked out and had to go through the waiting room where all the other happy couples were there waiting their good news with anticipation. I couldn't blame them for their happiness, but why did they all have to stare at me? I put on a smile, hoping they would think my tears and puffy eyes were from crying because I was happy about seeing our baby for the first time.
We quickly left the building and my husband and I drove to the beach. It's the place we felt we could talk and cry and pray and just be together.
We spent an hour or so calling our pastor, texting brief messages to our friends who were curious as to the gender of the baby, and just crying and talking with each other. We walked the beach and tried to get a grip on the situation as our world was falling apart. At that point we were about 89 percent sure we weren't going to terminate the pregnancy. We weren't even sure what or IF we should name the baby. We just didn't know how to respond to this wave of information. We headed home and picked up our daughter from my parents house.

We were supposed to go to a close friend's wedding the next day, but rather than have to explain to hundreds of people about the baby, and bringing down the mood on an otherwise joyful occasion, we chose not to attend but decided to leave town with our daughter for some much needed bonding. Some dear friends of ours offered to pay for a hotel and send us to the zoo for the day. It was so wonderful and we felt blessed. Those days were bittersweet for us. We tried to laugh and enjoy our time but little things would sneak in and twist our heart.

Days passed and the waiting continued. But each day, we felt held up by the arms of Jesus and the prayers of our friends and family. I can't even explain it, but I know that without Christ in our lives, we would have probably sunk into some kind of depression. I never once blamed anyone (except myself) for what was happening to us. Not even God. I knew that He had a plan and a reason for putting this in our story. I've been through hard times before but never had to deal with anything of this magnitude. We were learning a new way to trust. What I didn't know, was how much God would use our trust and faith to minister to people. From the first week we were hearing from people about how much our faith had been an encouragement to others. My husband and I felt, and still feel, inadequate to be receiving any type of praise for our faith. And I am not too proud to admit that it's not my strength but Christ's that even allows me to get out of bed in the morning.

We heard from the doctor about the amnio results and there was no chromosome issue. But they did come up with a diagnosis: Achondrogenesis. It's a lethal form of dwarfism and there are no recorded cases of babies surviving. We know we don't have much time with her, and there are so many unknowns to what we do know. But the one thing we can bank our life, and hers, on is Christ. He has chosen us to be her parents. And someday, maybe, we will know why. But for now...we wait.

We have decided to name her Carina Faith. Carina means "Dear Little One." And Faith because that's all we have.

I am going to continue posting as we get updated information on our precious Carina. Please feel free to ask questions and continue to pray us through this journey.

Kristin