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