For starters, I want to say thank you. I appreciate so much your comments, e-mails and prayers. While I have been spending less time on my computer and more time with my girl, I have to admit it was nice to log in, just now, and feel so much of your support. Thank you. You truly have become my friends. What a blessing.
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Now, there were 2 comments I wanted to address. No, no, not negative ones. But medical ones. So here goes... (* just click on the text below to enlarge if it is too small for your eyes!)
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Kelly is right. There are children who live with Trisomy 13. I am not sure I would say "quite a few" though. Many babies (of those who are born alive) with this diagnosis die within their first few days or weeks. Actually, here are some statistics that I have found on a few different sites:
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The median survival time for infants with Trisomy 13 is 7 to 10 days.
30% of infants with Trisomy 13 live to one month.
91% die within the first year of life.
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(I can't tell you much I hate those odds).
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According to our Genetic Counselor only about 5% of babies with a full Trisomy 13 diagnosis (what April has) live over 6 months. Yes, some babies and children with less severe forms of Trisomy 13 can live many years. I have seen many sites with stories and pictures of these little (and sometimes not so little!) miracles. I have heard the personal stories of such as well, as I am a member of an online T-13 Support Group. But with April's combination of Trisomy 13 and Holoprosencephaly, no, we have never been given much hope.
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We were told very early on to terminate due to both of these conditions, as well as her lack of growth (sick cells = no growth) and low heart rate (heart problems are very common in babies with Trisomy 13). Of course, you know, we chose against that, and here we all (still!) are today.
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I know that God is in control and I have never clung to the words of our Doctors, Counselors, or even our midwife (even though love her). Doctors are not God (no disrespect meant by this comment), and April has already beaten the medical odds in more ways than one.
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I do hope, but what I hope for is no longer "my miracle" or merely for April to live. It isn't really about what I hope for, or what my hope is in, it is who it is in, and I hope in Him.
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Next up...
Dina is not alone in this question. It is one I am e-mailed about almost daily. I have answered it before here and here, as well as a few other places I am sure, but here is the crux of it... 
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Now, there were 2 comments I wanted to address. No, no, not negative ones. But medical ones. So here goes... (* just click on the text below to enlarge if it is too small for your eyes!)
.
Kelly is right. There are children who live with Trisomy 13. I am not sure I would say "quite a few" though. Many babies (of those who are born alive) with this diagnosis die within their first few days or weeks. Actually, here are some statistics that I have found on a few different sites:.
The median survival time for infants with Trisomy 13 is 7 to 10 days.
30% of infants with Trisomy 13 live to one month.
91% die within the first year of life.
.
(I can't tell you much I hate those odds).
.
According to our Genetic Counselor only about 5% of babies with a full Trisomy 13 diagnosis (what April has) live over 6 months. Yes, some babies and children with less severe forms of Trisomy 13 can live many years. I have seen many sites with stories and pictures of these little (and sometimes not so little!) miracles. I have heard the personal stories of such as well, as I am a member of an online T-13 Support Group. But with April's combination of Trisomy 13 and Holoprosencephaly, no, we have never been given much hope.
.
We were told very early on to terminate due to both of these conditions, as well as her lack of growth (sick cells = no growth) and low heart rate (heart problems are very common in babies with Trisomy 13). Of course, you know, we chose against that, and here we all (still!) are today.
.
I know that God is in control and I have never clung to the words of our Doctors, Counselors, or even our midwife (even though love her). Doctors are not God (no disrespect meant by this comment), and April has already beaten the medical odds in more ways than one.
.
I do hope, but what I hope for is no longer "my miracle" or merely for April to live. It isn't really about what I hope for, or what my hope is in, it is who it is in, and I hope in Him.
.
Next up...
Dina is not alone in this question. It is one I am e-mailed about almost daily. I have answered it before here and here, as well as a few other places I am sure, but here is the crux of it... .
D and I had a horrible time with our Doctor. Constantly being talked to about termination, induction, etc. gets to be a little draining (do you sense my sarcasm here?) In short, enough was enough. After an appointment that pushed me to my limit (which I blogged about in detail here), D lovingly suggested "another option." After a few conversations with each other and then with a few midwives our decision to change our plans was an easy one.
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Home birth is a very safe option and one in which I have grown to be completely comfortable with, and whether in the end we meet April after a live birth or not, have 1 minute, 1 hour or 1 day with her, we want our girl to just feel loved and be in our arms, not on machines and in Dr.'s and nurses arms. And to quote from a previous post: If God heals her? If she is well, but needs something that isn't available here (at home)? - Well, we are only a short drive (or even quicker ambulance drive!) to the hospital.
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Hope that helps.
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And now, this exhausted gal is going to bed, but not first without praying. And can I ask you to pray too?
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These two requests have been brought to my attention for next week's "His will Wednesday"post, and usually I would wait and post them on Wednesday, but honestly they have been on my heart a lot today, so here they are:
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Meet Jennifer - Jennifer's husband Dean has been out of work for about a month due to illness. He has been very dizzy, his equilibrium off, feeling unstable on his feet, etc. The Doctors aren't sure what is wrong yet, but Dean had an MRI earlier today. Tests like these, as so many of us know (even tests to rule things out) are very stressful. Will you keep this family in your prayers? (And Jennifer, let me/us know when there is an update!) Click here to visit Jennifer's blog.
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Also, there is a 6 year old boy from one of my reader's communities named Noah Gentry, who drowned last night at a country club swimming pool. There were several other students and parents and lifeguards involved in this situation and many hurting hearts. Will you keep Noah's family and these others in your prayers?
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And of course, I could use your prayers too. These days are the hardest of my life and I covet your prayers during this time...
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Thank you friends...
