Friday, June 22, 2012

Baby Girl

It has been a very long time since I touched this blog. After I posted about Olivia's first birthday, I wondered what I might do with it...tell stories about the girls, us, life...I don't know. It seemed the best thing to do was to put it to rest. We had used it to share our story and communicate with so many who graciously thought of and prayed for us during our pregnancy. And while we still miss our Allie, our daughter we never got to know in this lifetime, we have been blessed and have experienced so much joy over the last few years with our darling Emily and precious Olivia.

But life is never predictable, and we have been thrown another curve ball.

After a lot of prayer over the past couple years, we decided to try for another child. And shortly before Thanksgiving 2011, we found out we were expecting. Although I felt physically rotten most of December, we were excited to share the news with family over Christmas. Fears lingered within me, knowing there were no guarantees that this pregnancy would be "normal," but I continued to pray and trust God with the circumstances.

Shortly after Christmas, I felt like something wasn't quite right. I was primarily concerned that the toll the last pregnancy took on my body was going to cause me to have issues carrying this baby. I went in for an ultrasound again at 11 weeks. My body was fine, but there were concerns with baby.

A large pocket of fluid on the back of baby's neck had developed. All babies have a little bit of fluid there, but our baby's was thicker. We were told that this could be an indicator of a chromosome defect: Down's Syndrom, Trisomy 13, or Trisomy 18. We were referred to the perinatologist to take a closer look and then spoke to a genetics counselor. At that point we were told that our baby had a 30% chance of having a defect, but that left a 70% chance that things were just fine. We were to come back in two weeks to do another ultrasound and examine the fluid.

Two weeks later we returned, and it seemed our prayers had been answered. The pocket of fluid had reduced dramatically to a normal size, and other than baby being a little on the small side, everything else looked great. So we felt safe to begin sharing the news with others beyond our families that we were expecting.

Five weeks later we returned for our 18 week ultrasound with the perinatologist. My hope was the biggest news of the appointment would be baby's gender, and then they would send us merrily on our way.

The ultrasound technician informed us that we were expecting another precious girl. So many people had asked us, "Are you hoping for a boy this time?" But in all honesty, we did not care. We adore our girls, and while having a boy would be fun, the thought of another little sister was just as much fun.

But after the news that baby was a girl, our perinatologist entered the room, and we could tell all was not good. He said that baby had some heart defects, and that there were cysts on her brain. He suggested we do an amniocentisis to get the full picture of what was going on with baby girl, so we would know how best to treat her. I asked what specifically he would be looking for, and he replied that chromosome defects were still a possibility.

I think our hearts hit the floor for a second time. Minutes later we had the amnio done, and we began the 7-10 day waiting process for results.

Okay, heart defect, we could do surgery. Brain cysts, I've had two friends whose children had them in-utero and they went away on their own. Certainly this could all be "fixed."

But ten days later I finally received the call from the genetic counselor. I really thought she would call and say, "Good news! Baby is going to be fine!" Instead she gently delivered the news that our precious baby girl had Trisomy 18.

I was familiar with Down's Syndrome (also called Trisomy 21), and had seen a video about a family who lost their son to Trisomy 13, but I didn't know anything about Trisomy 18. The counselor shared some information with me and gave me some resources, but all in all, it just plain isn't good.

The effects of having three copies (a trisomy) of your 18th chromosome causes not only developmental issues, but multiple issues with your organ systems. So our baby girl's heart defects and brain cysts are very characteristic of Trisomy 18 babies. But there are many other issues that arise from it too, so many that babies with this defect rarely make it a week after birth, and those who do almost never see their first birthday.

So right now I am closing in on 35 weeks, and we are awaiting our sweet girl's arrival. It is truly amazing that she has made it this far...many babies with Trisomy 18 don't make it to term. And if we didn't have the diagnosis, I would never think anything was wrong. She is super roly poly, always flipping and kicking. But things will be different when we deliver. We don't have any idea how much time we will have with her, but we don't anticipate it will be long.

So there is the story, in the factual sense.

I have struggled for the last few months about whether or not to even write about this situation. In some ways I'm ashamed of putting yet another Reade "drama" out there. I know everyone goes through hurts in their lives, and I'm in no way trying to say that our current hurt is worse than anyone else's. There are lots of people for whom I am praying right now, because they too have very difficult things going on in their lives.

In addition, going through this has been very draining, physically, emotionally, and spiritually. For a long time I didn't have the energy to try and write our story. But as time draws near for our baby girl to arrive, I felt this sense of urgency to write. There was something comforting about writing about Allie during our last pregnancy. We didn't get to raise her on earth, no one ever got to meet her in person, but she was here, and I have never questioned the significance of her short little life. And this blog documented the everlasting impact she had on us.

And to say this little girl has had an impact on us is an understatement, and I want it documented too.

I have no idea how much I will write in the next few weeks...I feel there is so much to say in regard to the way people have once again reached out to us and loved on us. I am amazed at people's capacity to bless us. After everything everyone did for us during our last pregnancy, then to come back and bless us again...we just feel, in a way, spoiled.

And there is even more to say about our journey of faith. Like Twin-to-Twin Transfusion Syndrome (the issue Allie and Olivia had), Trisomy 18 just happens. There is no cause, there is no prevention, it is just a mutation. All of our doctors have solemnly said that we have been hit by lightening twice. But I don't really believe this is all just by chance. I believe in the sovereignty of God, and there is purpose behind all of this. Don't get me wrong, if I could change our situation and have both my Allie and this baby girl with me forever, I would. But I take comfort in knowing that this is not a mistake. This precious girl is fearfully and wonderfully made, even with all of her earthly "imperfections." She is perfect in the eyes of God, and her little life has great purpose. God has told me that over and over again through this process: through a mentor, through our pastor, through devotions, through His Word. And I love her more than life itself.

Thank you for reading about our sweet baby girl.

Much love,

1 comment:

  1. I could write forever about the love and support which you know is around you and how the crosses which you bear never greater than God knows that you can carry, but I do not want to mislead or ignore the feelings which bubble up. Even Jesus in his moment of crisis asked God to explain the pain and suffering under the doubts of feeling forsaken.

    You are not now and never will be forsaken by each other, by us or by all that surrounds you.