We went to our weekly appointment at the perinatologist and found out that the fluid levels of the babies had changed since last week and they are now in the "danger zone" Baby B (the one with more fluid) was above 8 cm and it is not supposed to be above 8. Baby A (the one in the smaller sac) only has between 1.5 and just under 2 cm of fluid and they are not supposed to drop below 2cm. Her sac is almost shrink wrapped around her little body. They could also not find a bladder showing up on Baby A (and it was clearly there last week) which means she is not getting enough fluid anymore to make pee so we went from maybe turning into Twin to Twin Transfusion, to a stage 2 TTTS (twin to twin transfusion syndrome) Basically the short version of TTTS is that because the babies share one placenta they are at higher risk and with TTTS they are not sharing the blood flow in the placenta making it dangerous for both babies. One is getting too much and one is not getting enough.
So after over 2 hours of scanning on the ultra sounds and 3 different doctors looking at the situation, we were told we need to fly to LA California on wed. and have surgery thursday.
The surgery is an in-utero laperoscopic surgery that will go into the placenta and laser the blood vessels so the babies can't share them anymore. It basically cotterizes the vessels to stop the flow from going back and forth.
The surgery is risky to the babies, but it is a greater risk to not to the surgery. Without the surgery, they say there is a 95% chance that the babies won't make it, so unfortunately we don't really have a choice.
We are so very nervous and emotional and are praying that both babies are strong enough to handle this surgery and that they will both be ok.
You can actually watch the surgery we will be having done
and the doctor in the video is the one we will be having do the surgery as well.
The statistics are supposedly favorable for this surgery, 90% survival rate for one baby and 70% for both, but when it comes to your children you don't want a % for success unless it is 100%.. So that is what we are praying for.
For the next few days we would appreciate all the prayers we can get for these little girls to be ok and that this surgery will be successful and both babies will be healthy!
64 comments:
Oh, Kecia! I was just thinking about you and those sweet babies the other day, wondering how everything was. I will definitely be praying for them and for all of you during all of this.
our thoughts and prayers are with you over here!
Prayers on the way from Washington State! I love reading your blog, you are a total inspiration as a mother and advocate for children with Down syndrome. Prayers prayers prayers.
Our prayers for you and your precious babies. May God grant you the peace that only He can.
Good luck Kecia! You never cease to amaze me! Praying for you and your little ones! -Tori Crowell
Praying for you and your little ones!
Oh Kecia! You know I’ll be praying for you. Can I help out with the girls while you are gone? Please let me know. I’d love to help with having them here or bringing dinners over or whatever. Prayers, prayers and more prayers for a successful surgery! Love you!
Kecia, many, many prayers for you, your family and especially those precious little babies!
praying for you all!!!
praying for your precious babies...and you all....
Oh my goodness!! I'll be thinking about you and praying for you on Thursday. What a tough time. Hang in there! Many prayers will be with you!
OH NO!! I will be praying for you all! Sending you hugs!!!
PRAYING Kecia!!!!
Praying all is well! You are a strong woman :)
Kecia-
I am a reader in Los Angeles, who has followed your blog through RR for many months, from when you were in Eastern Europe through Mia's homecoming and beyond.
I am a licensed social worker here in Los Angeles. If you would like my phone number in case you need anything, please feel free to email me at jabreman@gmail.com. I would be happy to help you with anything that you guys need...a meal, an ear, anything. I am the momma of two little ones myself and my husband is a clergy person. I know that you guys will likely have some support here but if you need anymore care or kindness, please let us know.
May God bless you all and the doctors performing your surgery.
Jane M.
a reader/mom in Los Angeles
I somehow missed hearing about Adrie, but oh my goodness you guys are being put through the ringer. I would give anything to be able to help you with your girls and surgery and everything...Ill have to think of a way to fed ex a few miracles to Utah and California! Ill be thinking about you and of course praying for your family during this scary time. Just know how very much we are all pulling for things to work out 100%! Which im sure they will.
Stay strong my friend!!!
Oh Kecia, my heart just hurts for you friend! My soul is just weary for you. I am praying hard for you and for all of your girls (and Kris) that everyone stays comforted, courageous and healthy through all of this. Praying for those babies! And also praying for Adrie's elbow!! Poor little thing. Ouch! God's love to you and yours.
Kecia! You are an incredible person! I will be praying for you and the babies often! Best of luck!
Emily
Oh, sweetie, we are praying for you too.
Lots of love,
Melissa, Lars, Jens, and Anders
I love reading your blog. You are a very strong women. I will most defiantly pray and fast for those babies and your family. You already have a beautiful family here on earth and I am going to pray with all my might for you and those precious babies. Good luck:)
Oh sweet, sweet Kecia. And to think I was complaining about having my appendix out at 18 weeks. My prayers will continually be with you and your family and your two precious babies. Love always, Elizabeth
Praying for you and your precious girls. Believing for God to guide the surgeon's hands in performing a life saving miracle for both babies. Blessings.
Praying,praying, praying. We are here , just outside LA and would love to help you with whatever you might need. Anything at all. My husband works right there and the hospital you aare going to is literally right behind Children's where you know we have spent most of the last 4 years we Miss Z. So we know the area well.
I have to start out by saying that my kids are slightly obsessed with your blog, and my Emily already thinks Bree and Mia are her little soul sisters. Seriously, though...Kecia, even though we've never met, I have honestly thought of you every day, especially since you mentioned that the fluid levels of your twins were measuring abnormally. We will definitely keep you in our prayers!! When my TTTS got to the dangerous (acute) stage, we were past the point of being able to do the laser surgery (our only option was amnio-reduction), but I read everything I could about TTTS, and it sounds like there has been great success with the laser surgery. My heart goes out to you and we wish the very best for you and your family. We will anxiously await an update on how things are going. {{hugs}}
Kecia,
I am praying for you and the babies!! I live about an hour away from L.A. So, if you need anything at all, please let me know. My email address is fiveforchrist2001@yahoo.com. My family is the one who is adopting Autumn just in case you didnt remember who I was. God bless you and your sweet family!!
Sherry Quinn
Oh Kecia, I'm so sorry. So much stress! Praying here!!! Praying for 100% for both babies, and peace for you and of course that the doctor hands are guided by Jesus during the surgery.
We 're all praying !
All the best Kecia and please update us when you can.
This is sad news! Evan and I are praying for you!
Love, Emily (Glauser) Romrell
Will definitely keep you in our prayers. Show us your glory, Lord!
Love and prayers for you and the girls as you undergo this difficult time. May the Lord give your other girls understanding and patience as you take care of the little girls right now.
Praying that you and the babies feel safely held in the palm of His hand. Know that he will touch you with his loving, healing, grace.
I pray that the Lord intervene by guiding the hands of the surgeon he has chosen for his (and yours!) children.
Praying for you and your precious babies.
Dearest friend,
I am praying for your hearts as I know a storm is raging there that only God can quiet. I am praying for the surgery to be an awe inspiring success. Lastly, I am praying for a God glorifying miracle, that His healing hand reaches down from Heaven and covers you, heals you, and your babies and you will no longer have to worry for the rest of this pregnancy. love you, friend, lifting you up, so very, very much.
Renee
We don't know each other and I'm not sure how I found your blog. I saw this post and I wanted to offer a little encouragement. A dear friend of mine had TTTS with her twin girls. She was given the same odds as you and had no choice but to have surgery. The surgery went great and she now has two healthy happy 4 year olds. Also, all your girls are absolutely beautiful. Prayers for a successful surgery!
Keeping you all in my thoughts and prayers!
I'm so sorry to hear your TTTS is getting to the laser stage. (My TTTS boys are 4...a friend of a friend saw your post and shared it with me because of the connection). We were sent to Seattle (from SLC) for Walker to do our laser but ended up w/ a cerclage and 3ltr fluid reduction and then many more fluid reductions w/ Ball/Belfort here. "Best of" options are always changing :(... I hope things go smoothly and your little ones arrive safely much closer to term.
Kecia, I'm so sorry to hear this! I will be praying for you and the babies! I can imagine how frightening this is, I'll pray for your heart and emotions as you go through this!
So sorry to hear this news. Prayingbfervently for you & the babies.
May you, and the baby girls come through this just fine. You may as well be part of that 70%. Best wishes and lots of prayers.
Kecia, I will definitely be praying for you and your little ones. I can imagine to a small extent how worried you must be right now as my baby Monet had to have an in uterine blood transfusion before she was born. Fortunately there are excellent doctors and technology that gives very real hope and it sounds like you are getting the best care out there. I wish I lived closer to help out! I would LOVE to watch your girls. You do seem to have a very wonderful support system of people who care about you and are very willing to be there. Let them help so that you can take care of yourself at this time and hopefully in the future this will all just be a memory with a very positive outcome. ((hugs))
You, your family and especially your sweet girls are in my prayers.
I found you through a friend of mine who pointed me here. My twins had TTTS too - my donor was shrink wrapped (NO fluid) and my recip was "normalish" fluid. Because the recip wasn't excess fluid yet we were told to wait and see, but were planning to fly to Milwaukee for the same surgery. I went on bedrest and protein drinks and just waited, and we got lucky to have it stabilize on its own, but I stayed on bedrest and was monitored every week with u/s. TTTS is just awful - but I'm happy that there are more and more doctors with the experience. I am happy too help or get you in touch with others who have had the surgery (I know a few) and will be thinking of you. (Don't get overwhelmed by my blog - my daughters disabilities have nothing to do with TTTS - it was something else).
Prayers for the safety of your babies, for your safety, for the wisdom of the doctors, for peace and strength. I live close to Sherry so if we can do anything to help we can team up too.
Praying for you & your babies!
Kecia...amidst all your comments I sure hope you get this! I am a fellow RR momma and have followed you guys! I friend of a friend had this surgery and her girls are healthy and thriving! I followed her blog all the way thru!! I know you have probably been referred to a trillion different sites and so forth but thought I would share! Praying for you and those sweet sweet babies...and of course the rest of your crew through all of this! Here is the link for that family http://estherslittlewonders.blogspot.com/
Oh, my Kecia. How scary for you. So amazing the technologies that can save unborn babies lives though. Aren't we so glad we live today? Praying, praying my friend.
You and your family are in my prayers!!!!
Sending MANY prayers!!!! Safe travels!! I hope Adrie is feeling better!
I'll be praying for you and the twins, that things will stabilize and you won't need the surgery.
If you do need the surgery, I'll be praying for all of you and for the wisdom of the doctors as well.
I'm outside of LA (in Santa Monica). We've got a quirky, but good, service oriented ward out here. If there's anything that you can think of that you need, let me know and we'll make sure that arrangements are made.
My email address is thejessicarudder at gmail dot com.
Best,
Jessica
Thinking of you and your sweet babies. I pray the Lord will give you comfort as you prepare for the surgery and that the doctors will be guided and all will be well. I wish I could do something else to help you and your family. I will definitly keep you all in my prayers.
Prayers for you, the babies and your whole family. May God's love surround you in this time of unknown.
Hang in there Kecia! I spoke to Kris this morning and have felt sick every since. Just wanted to drop you a line and let you know the Enger family has you and your family in our prayers!
Definitely continuing to send prayers and love your way! Thank you for the especially beautiful recent posts.
Praying for those sweet little girls as well as all of your family.
Oh Kecia! My heart goes out to you and your family. We will definitely be among those praying for you. You've experienced miracles before and I have a good feeling you will again. You two are an amazing team. Hope you feel at peace.
(Kathleen and Dillon)
Praying for you and your precious children! I have a friend who had TTTS with her first set of twins; they survived after some tense weeks and are now twelve! She just delivered her second set of twins just recently shared some tips with me if you want them. She is a strong person of faith and is praying for you, too! Praying, praying for you all!
Kecia! I saw Kris and your girls at IMC yesterday (I had an appt. too) and jumped up to say hi, but the doctor took me back right then. We are praying like crazy for you and hope the outcome will be a good one. You and your family are amazing and deserve some good luck. You're a great example!
lots of love
meg
Praying for your precious babies!!
Done.
More prayers coming from our house too. Prayers and love.
We'll be praying for you, too. I've been out of the loop and just got caught up. Praying for the babies and for you!
praying over here as well!
praying for you all
our prayers are with all of you
xoxo
cathy
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