Tuesday, January 6, 2015

18 weeks, 9 out of 10, 50%

Where do I even begin?

The 2nd week of May, Jeremy and I were thrilled to find out we were pregnant with baby number 2. A much welcomed joy in the midst of the pain of losing my dad.

At 18 weeks during our first ultrasound, we were once again thrilled with more news- it was a son! While celebrating the good news, I was left a voicemail saying they couldn't get a great picture of his heart and that we'd need to see a specialist in Brookline the next day for another ultrasound. 9 out of 10 times, they do your scan, find nothing and send you on your way. Unfortunately, we were the 1 in 10. This specialist gave us an initial diagnosis of Congenital Diaphragmatic Hernia (CDH). She assured us it was nothing we did or did not do-- it was just one of those things that happen. Further testing would need to be done to determine the severity, however, if it was a chromosomal issue, his odds of survival and quality of life were not good. I did an amnio test (yea, that big scary needle right through the belly) and were sent home.

Monday morning, we headed into town with my mom to Children's Hospital where we met with cardiologists, had an ultrasound, an ECG and an MRI done. In the dreaded tiny room (that we still dread after many many meetings in this room) with the small table, white board and box of tissues, we were given the definitive diagnosis (tossing out the initial diagnosis of CDH) of heterotaxy dextocardia, asplenia. What does that all mean? His heart is on the wrong side of his chest and twisted around, one of his ventricles is substantially smaller than the other and he has no spleen. The cardiologist told us his odds of survival would be 50% and we were told we had the option of terminating the pregnancy. 

Fast forward to now.. I'm 38 weeks pregnant and getting ready to meet our son. We will give our son the best possible life and all the love his little heart can handle.. whether it's for 6 minutes or 60 years. We would have never made it this far without the constant love and support of our friends and our families. The endless appointments, the day long excursions into town for scans and ECG's.. without everyone's help with Evie, we would've been lost. 

We know it's going to be a tough road ahead. Extended hospital stays, multiple open heart surgeries and God knows what in between.. we know we will have the continued support we need to get through it together. 

I am being induced at Brigham and Women's in Boston on 1/20.. unless he decides to make an early entrance! Until then, keep us in your thoughts and prayers!! We'll be counting on them.


xo Marissa

3 comments:

  1. We will be thinking of you on 1/20 and hoping for a smooth delivery. Sending love to you all <3 Love, JJ and Eric

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  2. I pray for you and your gorgeous and loving little family every single night. I love you all and I can't wait to meet baby Jack! He is going to be such a stud! Stay strong beautiful family.

    <3 Casey, Colin, Mckenzie Rae, Rylee & Baby C

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  3. Every parent's wish for their baby is to enter this world perfectly healthy but sometimes reality hits hard. I'm so sorry this happened and you have a difficult road ahead. Both of of you are wonderful parents and the love you have for Jack can work miracles. You may have been the 1 in 10 but you could be part of the 50% that survives and thrives. I will keep you in my prayers and am sending you positive, healing energy. If there is anything I can do to help, please let me know.
    Love, Gerty

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