Thank you God for "saving my baby."

Wow- we can not thank you enough for praying for us during the last week & today especially during our specialist appointment. We have great news! It looks like the chance of our baby having a chromosomal problem has significantly decreased. Our baby is expected to live!!! The doctor can not guarantee us that we are not dealing with something lethal but he was very upbeat & positive & believes we are dealing with a genetic syndrome rather than a lethal chromosome issue. During today's test, I just kept repeatedly asking him about my chances of losing our baby after birth & other than that, I pretty much stopped processing information. I'm just desperate to know that our baby can survive. We can work with other issues. I just desperately want to know & hold & love & raise this baby! So I'll copy my mom's email below relating more of the actual medical information since I wasn't processing that too well.
Thank you for your prayers! We are so blessed to have you in our lives praying for our baby! We realize we have a great challenge ahead of us in parenting this special child but for today, we are going to celebrate this life & the miracle that we believe God gave us - of hope for a long, healthy life!
Here are some answers to prayers just from this afternoon:
our baby's chance of survival is huge- they doubt it is a chromosome issue at all but rather this is possibly somewhat correctable with surgeries & prosthetics
they are not detecting any sort of brain damage at this time & both of the possible diagnoses do not typically include mental problems
Reagan's parents & my mom were able to be in the exam room with us & the specialist & the genetic counselor. The doctor was very accomodating of our "support team."
My Uncle Jim is a pediatric radiologist who has been working with our doctors as well as other pediatric specialists since last Friday to help us get the best possible care for this child. He took his afternoon off to spend on the phone with us & the doctor during the entire doctor's visit. He was able to ask questions & make suggestions due to his expertise that we were unable to ever think of. Thank you, Uncle Jim, for your encouragment & support & love already for your great-niece/nephew! We are so blessed & can't wait for him or her to get to know you!
we had my former pediatrician (& dear friend of my family's) on a phone with the dr the entire appointment. Thank you Rick for your support & prayers & hugs during the last week. Rick has worked already to get us into the best pediatrician in Midland for special needs kids who I previously could not get into. After our appointment today, he got on the phone & found us specific pediatric specialists in Dallas at Scottish Rite (a pediatric orthopedic hospital). He then called us to tell us that he is trying to get us into Scottish Rite next week so that we can begin meeting with those specialists & forming a relationship with them now. He also gave us some other great news- the secretary at Scottish Rite doesn't have hands & feet! And, they organize their patients into family clusters with other families who are experiencing similar issues. So we'll have a built in support group there! And, it is all free! WOW- thank you Jesus for lifting off the financial burden in at least one area!
Thank you so all of you who were on your knees for our baby - i know my mom's group met to pray during our appointments, friends in waco were praying, family were praying, friends all over were praying! Thank you from the bottom of our hearts! We mentioned on the way to the dr's office that we felt the "peace that supasses all understanding" - it was way beyond our understanding but it also felt different from the numbness we've felt much of the week. We just had a sort of peace in spite of our complete fear. Thank you! (& thank you for already committing to continue praying for our child through the challenges ahead.) We are so blessed!
Someone in a prayer last night with my mom's group prayed that their babies could have a friend to grow up with. That has been so precious to me- thank you to all of you for loving our baby already.
We were originally told there were no feet. It seems that the baby has developed some sort of little foot/pad with a possible toe or two. I may have a toe or two to count! And this could be hugely beneficial for the potential prosthetics & surgeries.
Thank you for your understanding of our emotions & energy - for praying for us when we couldn't even tell you what to pray. For loving us when we couldn't talk or explain anything.
Several of you have sent food or flowers- thank you.
ok- here's the medical info from my mom's perspective- I just could hardly ask questions & continue to have my family repeat things to me...it's a lot to process in my sleep deprived, emotional, pregnant, state!:
The doctor was wonderful - and allowed Reagan's parents & myself in the examining room and Jim Brown (pediatric radiologist), Tom and Rick Rogers (good friend and pediatrician) to be on conference call. Everyone was free to ask questions and he was very thorough. At this point he is not recommending an amniocentesis because he first would like Katie to be scheduled for a fetal MRI and a fetal echochardiogram next week in Dallas - he is pushing this rapidly with a colleague at Southwestern Hospital in Dallas. He is also arranging for Katie & Reagan to meet with an OB if they feel that they can get the best support by being in Dallas with Children's hospital and Scottish Rite Orthopedic hosiptal for the delivery. The MRI & echo tests are non-invasive tests and will give an even more clearer picture of what we are facing. He believes this is a genetic syndrome - very rare (1 in 50,000) and not chromosomal therefore he believes there is not a chance of a lethal birth. He wants to wait about the amnio until we have these results as there is a risk of early labor with an amnio at this stage of the pregnancy. He was very clear that they can only diagnose so much through Katie and that they need to be prepared for more discoveries when the baby is born...he said if they want to be even more assured re chromosomes and other defects then he would recommend an amnio (this has a risk of 1 in 270 at her current stage in causing premature labor) With all that this baby faces at birth he would like to see it go full term. But he also has done thousands of amnios and feels that it would be safe for her but there are always risks....Here is what we know right now...The baby has all organs and they all appear to be functioning normally. The brain looks good.The baby has big cheeks :-) The baby is measuring large which is another very good sign (ruling out some chromosomal indications). The baby does not have full feet. It looks as if there is a half of a foot almost with possible one or two little toes (that would have been regular toes). The baby does not have wrists or hands however there are a couple of "digits" on the end of one arm and maybe one another arm. The baby is very active - yawning as if bored with all these tests...its eyes were open and looked quite large!The doctor was very interested in examining the baby's chin as he is trying to pinpoint exactly what this syndrome might be - he thought the jaw might be more inward but upon examination it looked almost normal and then he looked at all of our chins and said "actually it has your chins".... THe doctor did not want to name the syndromes he is thinking it might be and for that we are also grateful because one thing Katie does not want is to have her baby "labeled" - of course they want a diagnosis and at some point the doctors will hopefully know exactly what they are dealing with.So there we go - answered prayer indeed that we are no longer hearing the term "lethal" and now we will just take it one step at a time to continue to have everything prepared to have the healthiest baby at delivery and the best support for whatever comes next...We are so grateful to God for this outcome and grateful for Jim being onboard and researching the best geneticists and facilities and asking questions that we wouldn't think of and having the wherewithal to thank the doctor for allowing so many to invade his exam...for Rick who has made it possible for this baby to have the best pediatrician specializing in special needs take on this patient here in Midland and for paving the way to get Katie & Reagan connected with Scottish Rite in Dallas and for sitting with Tom today as they listened by phone to the exam and for all of you who are in this with us - who we know will pray and support and encourage Katie and Reagan and love this baby with all of his/her abilities. We are a very blessed family. I just cannot stop thanking God for allowing this child to live and to live in our family.Katie and I were both crying during the exam and the doctor stopped and showed concern and Katie just beamed and said "these are happy tears!" (my sentiments exactly !) Today is Katie and Reagan's fourth anniversary. Reagan has left with his dad to pick up the crib that they put on hold.

Please pray for miracles still. We have a long road ahead of us. We are dealing with all of the emotions of what we wish our child had and how others will treat it. And pray that all further tests show no complications or surprises and that this baby doesn't have anything else to challenge it.
We have an appointment tomorrow with my Midland ob & will be traveling to Dallas in a few days for appointments for the fetal mri, the fetal echochradiogram, & to meet with the ob there who would deliver for us in Dallas. We will then be back in today's specialist's office to meet with him again & do another ultrasound exam. It looks like we have a lot of doctor's appointments in our future. Thank goodness I'm not teaching!
My blood pressure has never been so high but the nurse assured me it is completely normal for the stress & fear we have been dealing with. (In fact, they usually see high bps in this clinic since they are specialists for scary pregnancies!) So, it is stress related & they are not concerned at this point.
By the way the doctor was very careful to keep the sex a "surprise" - so we are not going to know everything until his or her Birth Day ! We love you all & felt your prayers - thank you!!!
Love, Reagan, Katie, & Baby ???? (Jack or Ellie or William David - David after the psalms we have so desperately clung to throughout this pregnancy)

I keep thinking, this is my Psalm 139 baby! We continue to read this to our baby daily outloud & we continue to claim that while he or she is differently formed, they are PERFECTLY formed by a perfect God. They are wonderfully & fearfully made!
For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully & wonderfully made; your works are wonderful, I know that full well. My frame was not hidden from you when I was made in the secret place. When I was woven together in the depths of the earth, your eyes saw my unformed body. All the days ordained for me were written in your book before one of them came to be. Psalm 139

This is what the Lord says - he who created you...he who formed you...Fear not, for I have redeemed you; I have summoned you by name; you are mine. When you pass through the waters, I will be with you; and when you walk through the rivers, they will not sweep over you. When you walk throught the fire, you will not be burned; the flames will not set you ablaze. For I am the Lord, your God...since you are precious and honored in my sight and because I love you...Do not be afraid for I am with you... Isaiah 43: 1 -5