Ultra sound Update

How do we begin…where do we go from here? I can tell you that after Noah died I felt a peace about having more children…that God would not allow us to go through this again…well, in some respects that is true, but the heartache we feel today is the same as the day we learned about Noah’s problems. Our baby girl (the doctor said, "I think were pink" anyway) does NOT have Meckel-Gruber syndrome. In fact, the specialist said that if we did an amniocentesis we’d probably find all the chromosomes normal. So although we are not walking down the exact same path, we find ourselves on a different path that leads to the same end. Our baby girl is in heart failure. Those words that stung my ears, seemingly out of the blue two weeks ago (that “your baby is not in heart failure”), are indeed what I feared and prayed so hard not to be true today.
What the doctor saw this morning was fluid building up in the belly and liver, a very irregular heartbeat, and a heart rate of 75. (Half the normal rate of 150) Signs are pointing to the heart not working/pumping like it should. As the baby grows the demands on the heart only increase and so the doctor told us that it would be likely that when I go back in two weeks there would not be a heartbeat.
I was “prepared” for a Meckel-Gruber diagnosis and was relieved that no symptoms seemed to be present during the previous ultra sounds. I was so NOT prepared to hear that my baby really would not survive another couple of weeks.

Lord, I’ve been here before, I thought I learned a whole lot from Noah…what are you doing now? This is not supposed to happen, right? I know in my head of your faithfulness, your truth, but help my heart to fall in line with my head! I know that the road of bitterness is not for me, so instead- I choose to trust, but it is just so hard. I will cherish the time I have with my daughter now, thought things would be different…you know maybe ponytails, and ribbons, and dolls, and shopping, and long conversations over the phone or coffee…

I asked the doctor how common this heart failure is for babies, I was surprised to hear 1 out of 500. He said I’m unique because we don’t usually see patients for u/s at 11 weeks and so we’ve seen the progression. Normally we’d have a mom come in around 18 weeks for her u/s and just find no heartbeat. He said,” it’s like you got hit by a bus and a golf ball at the same time.” (At least he toned down his example a bit from the Potter’s experience and said golf ball instead of ‘shot in the back’)!

He did say some kind words to me as well, which Jen and I specifically prayed for as I drove to my appointment. He asked Mike if I “was ‘always like this’ understanding that our culture doesn’t handle these diagnosis’ or outcomes with grace. Most people throw their heads back in a Job like moment and ask 'Why me!?'” Mike then said, “we don’t what anyone to lose the message.” The doctor said, “I get the message, you’ve helped me see things differently. I learn more from my patients that they learn from me sometimes.” WOW was all I was thinking…maybe we are making a small impact on how he sees life and the value of it in this world.

He said more than once, “I’m so glad you have two children at home.” Yes, we are extremely thankful for the two children God has given us to raise, but we will always remember the two other children He’s given to us, me especially to carry, for just a short while. They can never be replaced – each unique and special, made in His image. Don’t know the why’s, but we know and trust that His ways are Higher than ours and His ways are Perfect.

“Hear my cry, O God; Give heed to my prayer. From the end of the earth I call to You when my heart is faint; Lead me to the rock that is higher than I. For you have been a refuge for me, A tower of strength against the enemy. Let me dwell in Your tent forever; Let me take refuge in the shelter of your wings.” Psalm 61:1-4

Thank you for your love and support. Words can not express our gratitude and the encouragement that they give. Continue to pray for us, and the baby…we know the reality, but we also believe in a God who can work miracles.