Sunday, September 25, 2011

My worst nightmare...

I feel like I should be waking up from this horrible nightmare at any moment, and yet, this is my reality. I am currently 20 weeks pregnant with my 3rd child, finally a little girl. Last week, my husband & I went in for an ultrasound at 19.5 weeks. We were so excited to find out what we were having- I knew it had to be a girl (and that was pretty much my only concern). The ultrasound technician confirmed my thoughts, but also then told us we needed to talk to the doctor because she thought some organs were in the wrong place. We didn't really know what to think at that time- just that maybe that was somewhat normal and hopefully not too big of a deal.

Unfortunately after talking with the doctor- it really is a big deal and it is called a congenital diaphragmatic hernia or CDH . It is basically a hole in the diaphragm of the baby and their organs are slipping up into their chest, causing their lungs to not fully develop. Statistically only 50% of babies diagnosed with this problem survive birth. Fifty percent.
After meeting with the doctor she scheduled an appointment with a specialist from Denver for the next day. I was hoping he would tell me that it was just a gas bubble and everything would be okay.

That night I was a wreck. I came home and just started researching this thing that I had never in my life heard of and never thought could happen, especially to me. This CDH is honestly every pregnant woman's worst fear. The internet is awful, but wonderful. I read so many other people's blogs- filled with stories of loss and heartache. I also learned if the liver is up in the chest your baby's chances of survival go way down. I learned about this head to lung ratio thing they measure and if your baby's is below 1.0 the outcome also doesn't look so good.

So, that next day (Thursday) I went with my mom to the ultrasound with the specialist (Bryan was tied up in meetings that he couldn't get out of all day). They spent about an hour doing an ultrasound and confirming my worst fear- the liver was up in the chest & the Head to Lung ratio was 0.6. Her heart is pushed all the way to the right side of her chest. I asked the doctor what he thought the odds were for my baby & he said 10%. My heart sank and I just wanted to die. How could this be happening to me? Why?

I was given the option of terminating the pregnancy. More tears. But then he said we could go full steam ahead and then he told me that things could change in the next 20 weeks with her development. We are just hoping and praying that things improve so that we can have a healthy baby girl in February. There is nothing else to do but hope.

The next steps for me are to meet with the Pediatric Surgeon in Denver (Dr. Rothenberg) and have a scan of the baby's heart. After those appointments I will have another ultrasound with the specialist (October 18) to find out if anything has changed.

For now, I basically want to curl up into a ball and hide/be put into a medically-induced coma until this is all over. I don't know how to do this. I don't know how to get through these next 4 months with out sobbing every day. I want nothing more than to have this healthy baby girl and just have a normal pregnancy. I wish this was not real and that this was not my life.

12 comments:

  1. I will continue to make you yummy chocolate desserts...

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  2. Oh Alyse, I am so sorry. My heart aches for you. I wish I lived near by to visit you and give you a big hug and help take your boys for you. You are in my prayers. I love ya.

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  3. Alyse,
    My heart broke for you and your sweet family as I read this post. Your family will be in my thoughts and prayers. I know that the power of the atonement is real. I know that thru it you will be able to make it through this challenging time and feel the peace and love that our Savior has for you, your family and your sweet daughter.

    All of our love...
    The Skinners

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  4. Alyse, I am so sorry. My heart is breaking for you. I hope that you can find peace during this time and I so wish I was there to help you. I'm praying for you and your sweet baby girl.

    love,
    Emily J

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  5. You will be in my prayers! I hope you can feel some kind of comfort soon.

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  6. oh my goodness Alyse!! this is such hard sad news. i would want to curl into a ball too. i am so sorry you guys are having to go through this. and with your first little girl. but for sure there is still hoping and prayer and fasting, and everything will turn out ok. we will be thinking of you.

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  7. Oh alyse. My heart is breaking for you. This is every parents worst nightmare. I am so so sorry you are having to go through this. Don't ever lose sight of the fact that heavenly father knows and loves little Ellery. He has a plan for her- whatever that plan may be. Miracles can and do happen. We will add your name to the temple prayer roll and plead the heavens for a miracle. You are a wonderful mother- Ellery is lucky to have you.

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  8. Alyse - I am unsure how to say all I feel for you and Bryan. You are amazing individuals and wonderful parents. My mind when reading your post fly immediately to the thoughts about how some spirits are so perfect that they are willing to choose imperfect bodies. And that they choose those families where parents are capable of handling these difficult circumstances. You are stronger than you think. The Lord knows is, and He is waiting for you to realize that fact too. I love you and I wish I were there to hug the crap out of you (sounds fun huh?:)) You are all in my prayers. Keep up hope. It is a ray of sunlight always leading to Him.

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  9. Altse...my heart is breaking for you right now as I read this. I'm so sorry to hear about your sweet baby girl. I will only hope and pray for you and little Ellery. Heavenly father loves you, he is there for you. You are such an amazing, loving, sweet mother! Ellery is blessed to have you. I will be thinking of you and your family. Wish I could be there as a friend to help you out and comfort you. Love you.

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  10. I will keep you guys in my prayers! Please let me know if I can do ANYTHING to help you guys out!

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  11. Alyse~ I'm so sad to be reading this. We haven't seen eachother in years, and yet I want you to know if I could come give you a big hug I would. You are a very strong person. I know this. You can do this for the next 4 months. You have your faith and very important, you have your family and friends to lean on. Hang in there and you and baby Ellery with be in my prayers.

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