A few weeks ago, our normal 2 week check up at the OB turned into a whirlwind of events to follow. We were sent to the high risk doctor after the OB noticed a cyst on our baby's neck. The high risk appointment included a forever long ultrasound where we saw our baby actually wave to us, kick and be completely stubborn. To us, we couldn't see anything different with this ultrasound than the boy's ultrasounds. However, after the doctor began to review the slides, his words were " I would like to go over some troubling findings." These are words that no parent wants to here. He mentioned the fluid around her neck as well as the size of her chin, then he moved to her heart. Our baby is missing the center wall between the ventricle (not sure of my medical terminology at this point) and due to her heart, there is fluid around her lung. The doctor did say that the heart is operable but he was worried about all of these issues combined. Would this baby be strong enough to survive the pregnancy and if so, how about the birth? With all of these findings, he said it would be wise for us to do the amino testing. I was not a big fan but after a quick glance at Ryan, we decided we would want to know if there is anything wrong so we could prepare. We were told that day that more than likely the baby had down syndrome but the testing would take 6 days (due to the holidays). Last Monday we received the phone call from the genetic counselor who confirmed what the doctor had already predicted and our world was forever changed. Our baby has an extra 21st chromosome.
The day we had our high risk appointment I decided to open a devotional that I had actually bought a few months ago. This is what I read:
My plan for your life is unfolding before you. Sometimes the road you are traveling seems blocked, or it opens up so painfully slowly that you must hold yourself back. Then, when time is right, the way before you suddenly clears- through no effort of your own. What you have longed for and worked for I present to you freely, as pure gift. Do not fear your weakness, for it is the stage on which My Power and Glory perform most brilliantly. As you persevere along the path I have prepared for you, depending on My strength to sustain you, expect to see miracles- and you will. Miracles are not always visible with the naked eye, but those who live by faith can see them clearly.- Jesus Calling (Sarah Young, devotional)
Ryan and I are beginning to come to terms with everything we have learned and are now trying to prepare the best way possible for our families new life journey. Like my previous posts have mentioned, our emotions have run wild mostly from fear of the unknown. What will our lives be like? What struggles will this baby face? We know that God will not give us more than we can handle so we are putting our trust in that. I pray that God will make me a stronger person so I can handle any obstacle and help this baby be the best she can be and live up to her fullest potential.
On Sunday, the boys and I headed back to church after skipping for the last few weeks. It was time to face those that have been praying for us. I was scared to have to explain the results or get the hugs I so desperately needed. Could I handle it? Well, I survived. I did have my moments of crying but I felt loved.
6 comments:
Tonya,
I am so amazed at your strength. When we went through times similar to these with Ayla, I could have not formed words. Thank you for sharing and letting us know how to pray for her.
She will be a little blessing and in the words of Isaiah 61:3-Your very own little Oak of Riteousness, a planting for the Lord's splendor and yours.
Love you,
Krista
Congratulations on your baby girl! I'm sure that was exciting news after two boys - finally some pink and ribbons! I'll be praying for you and your husband as you continue to digest your unexpected news. It feels so hard sometimes, but your little girl will warm your heart and make you love in ways you had never dreamed of. I'm sure your adorable sons will be great big brothers, too!
I am glad you found my blog - reading other moms' experiences with DS online really helped me when Chase was first born. If you ever want to email - mer.hilton@gmail.com
Keep reading the blogs! So glad you stopped over at my Mad House...reading the blogs of other DS mommies helped me SO MUCH, as well as writing my own.
It is a scary, crazy little path...you will walk down it and falter a little, you will not quite know what to expect around each corner, but I can attest that life will indeed be GOOD. And you will find this giant, wonderful, giving, understanding, compassionate, awesome community to support you if you go looking for it.
I always try to keep in mind that I don't know what God's ends are for us, but HE does. I had lots of dark moments, but even at just 3 years in, almost everything is light. Keep on keeping on!
Please feel free to email- lmaddex@gmail.com
My little girl had open heart surgery at 4 months (AVSD repair - which sounds like your dx). Those were, admittedly, rough months but she kicked butt and was out of the hospital within a week. She is a happy healthy adventurous little troublemaker now, and the joy of our lives (her & her big brother both). I won't offer you platitudes because it can be different & scary at times, but she is your daughter, she is already loved, and you'll find a world of support & resources out there to suit your mood, taste, & preferred level of info.
Hey. I am also new to the world of down syndrome. Our son will be born the first week in April, we found out at 21 weeks that our son has DS. Our story is at www.jaimeharman.blogspot.com
i am looking forward to following your story.
jaime
My daughter had surgery for a complete AV canal (sounds the same as Isabelle's) as well, at 4 months. You'll be amazed how resilient our little ones can be! Hang in there, ask lots of questions, and know that she will impact *all* of your lives in the most *amazing* way. ((hugs)) :-)
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