Email I received tonight from a mother of a living Trisomy child...

After reading this email from a mother of a Trisomy case, whose daughter is STILL alive, gives me even more hope than I already had. I will say that I "accepted" the diagnosis for the first two days after hearing it...but from then on I completely put my faith in God. He created this baby girl and he only creates the most perfect, beautiful things. His word is the truth and I believe His word!

She CAN and WILL be healed...and I will stand on that.

Hebrews 11 says it all...

Isaiah 53:5 (New International Version)
5 But he was pierced for our transgressions, he was crushed for our iniquities; the punishment that brought us peace was upon him, and by his wounds we are healed.

Romans 10:11 (The Message)
11-13 Scripture reassures us, "No one who trusts God like this—heart and soul—will ever regret it." It's exactly the same no matter what a person's religious background may be: the same God for all of us, acting the same incredibly generous way to everyone who calls out for help. "Everyone who calls, 'Help, God!' gets help."

Psalm 112:7 (New International Version)
7 He will have no fear of bad news; his heart is steadfast, trusting in the LORD.

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Chrissy, Hey, my little girl we were told from ultrasound probably has Trisomy 13 or 18 ... more likely 13. She had FOUR holes in her heart (probably all closed by now, through prayer and supporting her inability to feed enough by getting her a tube, so she had enough nutrition to allow those holes to close), she had (has? ... I don't notice stuff like that anymore) the rocker bottom feet you spoke of, and other things. Like hydrocephalus, spina bifida, cleft lip & palate.

I will tell you today that NO one can tell you who will and will not live. I walked into that delivery room with no hope. I want you to have hope. No one knows what will happen, and yes, sometimes babies have major organ involvement (hearts that are very "wrong," for instance), and they have a tougher time continuing alive. But no one can honestly say Trisomy 18 or 13 is "lethal" or "incompatible with life." If so, then how are so many living?

And I "got" your comment about it not being too much to ask God for just one or 2 things. One thing I learned was my limited trust (I got to the point that I only asked that her back would not burst) ... was an immature thing (for me, not you). Like my kids do, they don't ask for everything if there is something they REALLY want ... they save it all up for the big stuff sometimes, thinking we'll be more apt to give what they want. My dealing with God like that revealed something to me...especially when she was born alive and screaming, but the sac on her back burst. I was devastated and didn't speak about it for 24 hrs...till I got to tell the OB what I was thinking. She knew the deal ... we made our birth plan, and I told her I would not cope with that one thing happening. She was able to share with me how it didn't change her need for surgery, and several other things ... and that God was still in control.

About a month later I had a realization ... yes, it was important for me to pray for WHATEVER I wanted, and God wasn't going to "punish" me for my limited faith. It just allowed me to see my thoughts about Him. But the way He answered my prayer by giving me NOT what I asked for ... but for everything else, the things I did not dare to ask for ... showed me something about His desire to give us all good things. And only He knows what is our "best" things.

I know I don't explain it well ... clearly you can imagine that to me, "best" would always involve M being alive and thriving with us. But I know now that even being allowed to mother a baby that God knew at the moment He created her, was only meant to be here a short time, would be something I'd want. If He was that clear with me ... would I be willing to bring that baby safely here, not abort, not settle for early induction (to get things over with), not stop watching what I ate, drank, etc. .... and welcome that baby with the joy and love my family can give, would I do it? YES. I would not want that baby to miss out on the chance to be welcomed and loved and blessed along her way.

Anyway, I am praying for you. I work outside the home (a nurse) so I don't have really the time to read your entire blog. I am so proud of you for choosing to love your baby as she is. You will never ever regret opening your heart in this way, even though I know it feels terrifying to hope and risk having your hopes dashed. But do not let go of hope.

By the way, I had a crazy thought that I was so worried they would treat things at birth only based on a diagnosis, and that people would only look at M as "that baby in room 360 with trisomy ....." that we eventually refused genetic testing. But our daughter went to a children's hospital for back surgery and stayed almost 2 months - the back had to heal, and then we decided we wanted a tube in her tummy so the one in her mouth that was making her gag & stop wanting to suck could be taken out, so that extended it a little bit. In that time, although the first month's doctor group threatened us about the testing (they said the surgeons needed to know what she had so they could decide what they were willing to do!!) ... they eventually decided to see if caffeine helped her apnea. It was a turning point for her, because they were telling us all along that the apnea is what she would die of. But I can tell you now, that apnea is not dying. And the heart slowing when the oxygen level goes down (because of apnea) is a normal event, not another sign that the baby is dying. It is a very strange thing, to realize that all those reports of "3 apnea and bradycardia (heart slowing) episodes this shift, and 2 last night," was not the same thing as telling us "she died 3 times this shift and twice last night." We now know that when M starts having apnea again, we need to get a caffeine blood level (a heel stick for a simple blood test) and will find the caffeine level to be low, .. the pediatrician will increase the dose .. and the apnea will be under control again. We do have a pulse oximeter (shows oxygen level and heart rate) instead of an apnea monitor because the apnea monitor did NOT show us anything we needed to know, to safely monitor her. And all the things we needed to learn to take care of her (and yes, I was terrified I couldn't do it sometimes ... nurse or not) ... even our 7 yr old has been able to learn. He can do all except measure out her meds ... the others can all do tube feedings, measure meds (in front of us, and we check the measurements), watch her for apnea, etc. Of course, they are never alone with her, but still ... the parts that you think you cannot handle, you will learn are a piece of cake, and you will develop your own routine about them.

So do not be afraid. Remember, hope (no one knows the number of our days but God), caffeine & pulse ox, and there ARE specialists who will do what your baby needs with NO issues about her diagnosis. You are VERY wise to be looking and planning ahead like this.

Email me any time, if you want. I loved what I read of what you wrote - I am so private, so I am impressed by those of you who are brave enough to be so transparent, because you are not only able to connect with others who can share your experiences, but you also give hope to others, and teach us all as you share what you are learning. I am convinced that we grow the most during times like this. Mine seemed like the longest pregnancy in the world, but now I'm glad I had all that time to grow and learn what God had for me to learn, even though I cried so much.

C