Hi guys - I have a twin update for you. Unfortunately its not a good one. I have been struggling with how to communicate this so stick with me, and keep in mind that this is still really raw for me. Both of my girls were diagnosed with birth defects last week during a routine high res ultra sound they typical run on twins. Just prior to that time we gave them names. We named baby A - Faith and baby B - Grace. These names were chosen prior to us learning anything. Faiths condition is really bad, its call Congenital Diaphragmatic Hernia - I was told she has hole in her diaphragm that is pretty good sized (some are bigger, some are smaller and not as severe). This allows her internal organs to float up from above and crowd her lungs and heart - this is already happening as they can see her heart is displaced on ultra sound. They have given me a 30-50% chance that she will survive IF they find nothing else wrong with her. If she survives the corrective surgery - and I am praying my heart out that she will, she will have a LONG stay in NICU recovering with under developed lungs. Recovery time when and if she gets to come home could take years. I am devastated and heart broken and cannot bear the thought having to say goodbye to her after finally getting to meet her. Graces condition is more cosmetic and not so life threatening (as far as we know) but she will be born with a cleft lip and palate (please do not comment and tell me how easy that is for them to repair, Grace will require more than one surgery as its fairly significant - cleft palates are not repaired until they are 10-12 months old, she will most likely need orthodontic repair, have feeding problems and may also have speech problems). Yes, they are both confirmed diagnoses, I have many appointments and diagnostic tests in the coming weeks to answer the millions of questions we now have. This is what I can tell you. We are keeping our babies. There is no known cause for CDH, and none of the suspected causes of cleft palate apply to me. ***I am dealing with a lot right now and am kinda irritable so the first person that comments God never gives you any more than you can handle however well meant, will likely be blocked. *** Many of you have privately asked me if you could send a baby shower gift my way, while the answer is still yes - because the medical expenses we are now ringing up could easily bankrupt us we have been encouraged to start fundraising. Asking for help is not an easy thing for a self-reliant couple to do so I have actually written this post and deleted it 3 times now, this experience has been very humbling, and it will most likely continue to be even more humbling. So if you would like to donate to help Faith and Grace instead of send gifts - that would be greatly appreciated.
Posted on: Fri, 15 Aug 2014 00:16:30 +0000
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