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I’ll be 30wks on Tues if James continues to fight through this weekend

I’ll be 30wks on Tues if James continues to fight through this weekend. We haven’t shared a lot about his condition & that’s simply because there is a lot to share & it’s complicated. But ultimately, the build up of Ascites in his abdomen (fluid) is so great that it has collapsed several organs & will eventually put too much pressure on his heart. The fluid is one of many issues that he’s struggling w/ & the underlying cause of all of it can be explained by the fact that he has Downs. His lungs never had a chance to form & his heart has been showing signs of strain since his 20 wk ultrasound. He has almost no amniotic fluid left, he’s incredibly swollen all over & he’s also breech (which has lead us into hard delivery conversations since this has lasted a month longer than anyone anticipated). Despite all of that, his heart just keeps pumping. Evy’s cord was huge & we’re assuming his is too because he still has good flow from me & that’s another reason he can still hang on. The doctor told me “I know it’s bittersweet, but he’s still hanging in there because he has a really great connection to his mom.” ? I have delivered a perfectly healthy baby already & I am so thankful... but never in my life have I been so amazed at the miracle of perfect pregnancies than right now. I had diabetes with Evy & sure, she had hip dysplasia that seemed like that end of the world at the time... but this experience has made me look at Evy in disbelief. How can I have one baby who is so healthy and one who doesn’t stand a chance at life outside of me? If the Lord gives us other children after surviving this I will never ever take a normal ultrasound for granted. It’s such a gift from God to have a healthy pregnancy.... & yet it’s also a gift to be carrying a dying baby simply because God is asking us to. It’s the hardest act of obedience I have ever encountered. It seems pointless some days. It seems cruel & impossible other days. The ending & timing of this is very uncertain but all we know today is that we’re supposed to keep going, that God is still good, and that there is purpose in this sweet baby’s life.
08/05/2018

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