Wednesday, September 28, 2011

Thank you...

I just wanted to thank everyone for their kind words and prayers. After I made the blog post on Sunday, I woke up Monday morning & just felt so much peace. I know that is from the power of prayer & I am so grateful for all of your prayers for our family.

I thought I'd give an update on where things stand as of now:

The last few days I have done nothing but research, research, research & I think I know more about CDH than most OB'GYNs. Seriously. It seems like not many people know too much about this. I am so thankful I was able to learn so much (thank you internet) and with all of this newly acquired knowledge I have been able to make lots of phone calls and get answers to the millions of questions I have had.

Yesterday I was able to speak with Dr. Yang who is the pediatric surgeon at Cardinal Glennon Hospital in St. Louis. I also was able to speak with a Dr. Gien, a neonatologist at Childrens Hospital in Denver. I was kind of amazed that these two super busy men would take time out of their day & speak with me and answer my questions.

Dr. Gien (from Denver) was SO amazing & SO comforting to speak with. He really gave me SO MUCH HOPE. He told me that they have seen 18 babies with CDH in the last 2 years and of those, 17 have survived! Amazing! Also, 75% of those babies had the liver up in the chest- just like little Ellery. He also told me that every baby should be given a chance and they would never tell any one that they should terminate their pregnancy. He told me that the numbers I was given do not determine survival or not, all they do is indicate how sick the child might be after delivery and what kind of ventilation, time in NICU, etc. they might need. What a relief. He was the most wonderful person I could have spoken to and told me I need to enjoy this pregnancy because the odds are I will be taking home a baby after this is over. I told him I wanted to hug him.

So, our plan is to meet with Dr. Gien and his team at Children's Hospital sometime next week. Then we will have more ultrasounds, a heart scan and a fetal MRI. It will be a long road, but I am so thankful to have so much more hope and someone who is willing to fight for my Ellery.

My advice to anyone who is dealing with CDH is to ignore your Doctor & talk to someone in the NICU, the neonatologist or the pediatric surgeon. They are the ones that handle these babies, not the OB/GYNs. I wish I would have known that last week.

Thank you for all of your kind words & please keep our family in your prayers. We love all of you!

Monday, September 26, 2011

Hope

We have decided that the only way to function and go on with a "normal" life is to have hope & faith that this will work out for us. I love this quote from President Dieter F. Uchtdorf:

"The adversary uses despair to bind hearts and minds in suffocating darkness. Despair drains from us all that is vibrant and joyful and leaves behind the empty remnants of what life was meant to be. Despair kills ambition, advances sickness, pollutes the soul, and deadens the heart. Despair can seem like a staircase that leads only and forever downward.

Hope, on the other hand, is like the beam of sunlight rising up and above the horizon of our present circumstances. It pierces the darkness with a brilliant dawn. It encourages and inspires us to place our trust in the loving care of an eternal Heavenly Father, who has prepared a way for those who seek for eternal truth in a world of relativism, confusion, and of fear."

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.