Baby George

I don't even know where to begin...This is hard for me to write because part of me wants to keep this in and pretend like it's not...

I don't even know where to begin...This is hard for me to write because part of me wants to keep this in and pretend like it's not happening, but keeping it in makes me feel alone, and that just adds to the pain.  Our baby boy was diagnosed with Congenital Diaphragmatic Hernia and as soon as he comes into this world, he is going to have to fight for his life.   The minute he enters this world, he is going to be taken from me and hooked up to machines and tubes and Dan and I won't get to hold our baby because he'll be too unstable.  I'm willing to do whatever is best for my baby, but I don't know if I am strong enough for this...

The news came as a shock to me.  When to doctor told me that the ultrasound (at 24 weeks) showed that my baby's heart was on his right side instead of the left, I stared at her with wide eyes and just nodded, thinking, "Oh, I saw this on Grey's Anatomy and that guy was fine."  But as soon as they took me out of the ultrasound room and called Maternal Fetal Medicine at the hospital, it hit me that this could be something more serious and I just lost it.  I was alone and terrified and Dan was on his way to Oregon for the weekend.  I called him and he came back to be with me.  Neither of us understood what this meant but (despite the doctor's orders) we did some research online and found that the most common result for "heart on right side" was dextrocardia.  This is when your internal organs are flipped and not just arranged in a weird position.  These people can lead completely normal lives.  We hoped and prayed that this was the situation for our baby boy, but we wouldn't know for sure until the following week.  The wait felt like months.

At our appointment the next week with maternal fetal medicine, we had two ultrasounds done, one with an ultrasound technician and another with a specialist.  Both times they confirmed that our baby's heart was not where it should be, but thankfully, his heart was strong and developing as it should.  They both also had a hard time locating his stomach within the ultrasound, which scared me because I didn't know what on earth that could possibly mean.  While we hoped we would get a solid answer on what was going on, the doctor couldn't tell us for sure what we could expect for our baby boy until we got an MRI done and she could confirm a diagnosis.  We had to wait a week for our MRI appointment and another week for the results.   Two short weeks felt like months again.

The MRI wasn't scary but I cried throughout the procedure anyway, feeling terrified and sad for what the results could mean.  From what the specialist told us, it could mean either that our baby didn't have a functioning spleen and therefore wouldn't be strong enough to fight off infections, or he could have a hernia in his diaphragm, causing his lower organs to move up into his chest cavity.  To me, there was no good outcome.

The specialist we had met with a couple of weeks earlier called us a week later to tell us the results.  I was at work and stepped outside so I could react to the news away from my desk.  She confirmed that our baby has Congenital Diaphragmatic Hernia, meaning that his diaphragm didn't close all the way when it was developing.  The condition is serious in and of itself, but it is made more severe if the lower organs have moved up.  Our baby's liver has moved up into his chest cavity, pushing his heart over to the right and impeding the growth of his left lung.  He also has a separate complication of his trachea and esophagus being connected, which could explain the problem of his stomach not filling up with fluid and being hard to find in ultrasounds. I honestly (still) have no idea what that means and how they would fix it.  Devastated by the news, I left work in tears, grateful that I can set my own schedule and didn't have to work for three more hours with this on my mind.

A meeting with a pediatric surgeon a couple of days later finally told us what we could expect after birth.  I'll have to be induced up at the U so that they can have a team assembled to care for our baby as soon as he's out.  He'll be stabilized and then will undergo surgery to move his organs down and close the hernia.  After this, his left lung should have room and the capacity to grow.  We'll be praying that his lung will grow without further complications.  The surgeon told us we could be looking at a two month hospital stay, minimum.

I don't care about the hospital stay and I don't care about what's happening to my body.  All I want is for my baby to be strong enough to fight this when he's born.  I want to hold him and spend some time with him.  I want to see glimpses of his sweet little personality and I want him to know that I love him more than I ever thought possible.  I want to keep him safe inside me and sometimes wish he could stay there forever, because at least there, he's safe.

I shared this because it was hard to keep it in.  When anyone asks me if baby's doing well, I say yes, because they don't know and I don't want to cry in front of them as I explain his condition.  But if I don't tell people, then I'll continue to feel alone and if people are aware, then maybe they can pray alongside us.  Lately, I've come across a lot of blogs of mothers who have been in similar situations and I think of how brave they are to share their stories.  I see the support that they receive from those who love them and even from strangers.  How can I feel support if people don't know what's going on?  We've already felt so much love from those who know and are praying and fasting for our little boy.  We've named him Grayson Daniel and I think it's a beautiful name for a beautiful boy.  If you could keep him in your prayers, we would be eternally grateful.  We've already seen so many blessings and have had our faith strengthened and know that if it's our Heavenly Father's will, we'll be blessed to raise Grayson a happy and healthy boy.

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  1. Stay strong! You guys are great parents and this little babe is so loved! You're both in our prayers and I know that you guys will get through this. If Grayson ends up staying at the NICU that long, you can stay with us! Let us know if you ever need anything. We're here for you. Love you lots!

  2. Thank you for sharing. You are brave for doing that, and I hope you get the support you need. I am praying for you and Daniel and Grayson. And I know from experience that you can get that glimpse of your baby boy's personality no matter what the outcome. You will always be his mother, and mothers know.

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  4. I will definitely be keeping you guys in my prayers <3