Saturday, August 27, 2011

A day at a time

Many people have asked us how we are dealing with things since the diagnosis, and the main thing I always say is "we are taking it a day at a time". Each day is different-sometimes I feel pretty good and other days it is hard not to continuously cry. Thankfully Drew and I tend to switch off on our hard days, so when one of us is having a tough time, the other one can support and comfort them. It is amazing to me how God gives us those extra glimpses of His love on especially hard days-a text, a card, just someone checking on us-they all remind me that He is here and He is walking with us on this journey.

We saw the specialist again on Thursday the 25th-baby has grown quite a bit! They tried to see if they could determine if we were having a little girl or a little boy, but baby was being "modest" as I put it and crossing his/her legs ha! The heart rate was a strong 143, so we were happy about that. Unfortunately the abnormality on baby's head has grown, which the doctor says is part of having encephalocele and acrania (as baby grows so does everything else). That was disappointing to see, because even though we knew it wasn't likely that it would have shrunk, we still were hoping. After the ultrasound we were able to have time with Dr. Stanley to ask any/all questions. He was so patient with listening to and answering all our questions-I had many from researching online. One of my biggest questions was if the baby's head was operable-if there was any chance of fixing it. Online I read stories of baby's with encephelaceles that were able to have surgery after birth and survive. Dr. Stanley told us that in some cases that was true, but only when the encephaloceles were small. Our baby's is very large and severe, and since it is already that way so early in the pregnancy, and with the acrania (no top of the skull), it does not look like it is operable. He did say that they would keep looking and that you never know for sure until the baby is born. We are so thankful for our doctor-we know that if he sees any chance of saving our child, that he will tell us and try it. We feel a real peace about trusting him with our child because of his honesty and his hope-we know that the outcome for this will probably not be good, but we are blessed to have a doctor that is open to a miracle.

We also learned at the appointment that I will more than likely need a C-section to give the baby a better chance of surviving delivery. Dr. Stanley explained that babies with these conditions don't survive a typical labor a lot of the time, so to give the baby a less traumatic delivery and hopefully give us a bit more time, we are taking his advice and scheduling a C-section.

We left the appointment sad, but at the same time we feel a sense of peace. Does that sound strange? It does to me. The only explanation I have for that is Jesus. When I stop to think about this whole thing, I get overwhelmed. Yet through all that we have joy talking about baby and looking at the pictures in the ultrasound. What a gift the Lord has given us in this child, that even though we "walk through the valley of the shadow of death, I fear no evil, for You are with me; Your rod and Your staff comfort me" -Psalm 23:4.


Thursday, August 18, 2011

Our story

I wanted to start blogging to share what my husband Drew and I are going through in our lives right now. We have been so blessed by the support. love, and prayers of family and friends, but to be honest it has been difficult and tiring emotionally to retell our story over and over, and making sure everyone is updated. We want to walk this journey with you all, and so I decided to start this blog.

To give a bit of history Drew and I have been married since January 2010. He truly is the most wonderful, godly man I know and it has been so much fun being married to him. We always knew we wanted to have kids, and surprised many when we said we would love to have 6! Having a house full of love, laughter, and little ones has been one of our dreams and something we felt like the Lord had placed on our hearts. In late April 2011, we were shocked and excited to find out that I was 5 weeks pregnant! We had always talked about having kids after 2 years of marriage, so we were a little overwhelmed by the news, but still so happy. We immediately started talking about names and how we wanted to share our joy with our families. Three days later I started having some spotting and basically freaked out. I went to bed that night praying for God to take care of our sweet child. The next morning on May 2nd I miscarried. We were devastated. We spent a lot of time crying and praying and trying to make sense of it all, but anyone that has lost a baby (at any stage of pregnancy) will tell you that you can't. I spent a lot of time going on walks, crying and talking to God about all of this. His comfort and presence is the only thing that carried us both through that time. I never got my "whys" answered, but what I did receive was much better: HIM. Both Drew and I grew in our relationship not only with each other, but with Jesus. He taught us more about clinging to Him and trusting Him with EVERY part of our lives.

After that we thought it would be best to wait awhile before trying to get pregnant again. Little did we know that God had other plans. The beginning of June I started to feel those same little symptoms again and took a test "just to see". Sure enough I was pregnant again! This time we had more caution with our excitement. We were definitely still so happy, but it was hard not to worry that we might lose this baby too. Lots of prayers asking God to help us trust Him were lifted up those first few weeks especially. Each week though I would have more symptoms (which I read were great signs of a healthy pregnancy) and absolutely no spotting. We gradually let our worries fade as we shared the news with family and friends and started joyfully anticipating our little one. I had my first ultrasound at 8.5 weeks and started crying when I heard that sweet, strong heartbeat. Everything looked great! We were so happy and relieved.

Drew and I had committed to helping lead a mission trip to Ecuador in July, but due to the pregnancy and my intense symptoms (lots of nausea) we decided it would be best if he went and I stayed home. During the time he was gone a friend told me about the free ultrasounds that Hope Pregnancy Center was doing to give their volunteers training on their new equipment. If you have not heard of Hope, you should check out this wonderful ministry, I thought "another chance to see my baby, sign me up!" so I scheduled an ultrasound for August 2nd. My mom met me there and we ooh'ed and ahh'ed over the pictures-baby had grown so much! I couldn't wait to show Drew the pictures when he got home on August 18th. Two days later, I received a call from one of the nurses at Hope. She told me that the radiologist looked at my pictures and could not see the baby's head clearly, and recommended that I get another ultrasound from my doctor. She told me repeatedly that she did not think there was anything wrong, that the pictures were blurry and that was more than likely the cause of him wanting me to get one from my doctor. Those of you who know me know that I am a worrier by nature and so even though my head was saying that it was probably nothing, my heart was in a panic that something could be wrong. My doctor was not able to get me in until the following week, but thankfully my mom called my aunt, who is a radiologist at Baptist Hospital in OKC, and got me an appointment there with her the next morning.

My mom and I went to the appointment that morning, anxious but thinking that we were going to see baby healthy as can be. They did the ultrasound and my aunt told me that something was indeed wrong with my sweet baby's head and heart. She said that the baby had some kind of disorder where their brain was coming out of the top of their skull, and that there was something wrong with his/her heart as well. She told us that she was surprised I hadn't miscarried yet, and that I had a good chance of losing the baby at any time. If I did not lose the baby and carried to term, our baby would be "incompatible with life" and would not survive outside of me. She immediately scheduled an appointment for me the next week with a specialist at Mercy Hospital. I knew it saddened her to tell us this news, but I am SO thankful that she was able to see me and tell us what was going on, even if it was hard to hear. To say I was in shock would be an understatement. My mom and I just kept crying, I couldn't make sense of any of it. I kept thinking "how am I going to tell Drew?" My heart was broken. The next few days were a blur-calling Drew and getting him home (the ultrasound was on Friday and he was able to fly back from Ecuador on Sunday), talking with family and friends, and trying to process the news. Through this I cannot stress enough the huge blessing our family and friends were (and continue to be) in supporting us-to making me eat when I did not want to, to praying over us, crying with us, and just being with us. We have talked several times about how we don't know how we would get through this without the support and love we have received.

On Thursday August 11th we had our appointment with Dr. Stanley at Mercy Hospital. He confirmed what my aunt had thought, our sweet child was, in medical terms, "incompatible with life." We found out that he/she probably have either acrania or encephalocele-it is a rare disorder/neural tube defect in which the bones of the skull do not close completely, creating a gap through which cerebral spinal fluid, brain tissue and the membrane that covers the brain to come out of the gap in the skull. The doctor thinks that there may also be an abnormality with the baby's heart, but as I was only 13 1/2 weeks at the appointment it is hard to determine (baby's heart rate that day was 154 so still good). This is something that according to our doctor does not get better. I have a 20% chance of miscarrying, but more than likely I will carry the baby to full term. The doctor said that I will have a normal pregnancy (no danger to me and no complications for me), and that if the baby survives labor that we will have maybe 1-3 days with baby before the Lord takes him/her home. We were given 2 choices-to terminate or to continue to carry. We know that God has a perfect plan for this child and that He numbers their days and has a purpose for them, so we are choosing to carry. We know it will be very difficult emotionally, but we are going to try to treasure each and every moment with our child and thank God for the joy and whatever time we have with him/her. We are still grieving but have such a peace about our decision-this baby is God's and we are going to trust Him to take care of him/her. Please keep praying for us-the next 6 months are not going to be easy, and we still hope and pray for a miracle, but our biggest prayer is that the Lord's will be done and that He be glorified no matter what happens.

I named this blog "Alabaster Jars" because of the story in John 12 of Mary anointing Jesus with a jar of expensive perfume. In the book I Will Carry You by Angie Smith (which I recommend every mother read), Angie talks a lot about this story and it just resonated with me. Here is a portion that spoke to my heart:

"So she was holding a bottle of perfume, which, according to scholars, would be worth approximately $30,000 in our economy. She shattered it, and as she wiped her hair along Jesus' feet, she had no idea what her role was in bringing God the Father glory. So how can we presume we do?
Every one of us is given alabaster jars in our lives. Moments that have been chosen from before there was time, where we will follow the promptings of the Holy Spirit and glorify our Father with our offering.....Is it possible that we are chosen to undergo something when all the while the Lord knows that it will be given to Him in sweet surrender?"

So many times I have already asked "why? why this God? Two babies have to go home to you? I don't get it", and I am sure through this journey Drew and I will ask many more times. Something I am learning though, is that there is One who is walking this road with me. An answer I do have is this: He loves me, He loves us, He loves this baby, and He loves you. That NEVER changes. So I have to give this alabaster jar to the only One who can take my sorrow and turn it into something beautiful and use it for good.

"And regardless of whether or not your Lazarus walks out of the tomb, I pray that you continue to worship the Lord, keeping what He has given you until the moment you are called to give it away. And as the glass shatters all around you and you grow dizzy from the intoxicating smell of pure love, get as close to His feet as you can. And know this. It was always meant to fall from your hands. And He is glorified in the shattering."  -I Will Carry You 

We hope and pray you will take this journey with us and be brought closer to the Savior through it.