Prayers Please

We had our 20 week ultrasound with a fully anatomy scan for each baby exactly a week ago today. Since the results we’ve taken some time to gather our thoughts/emotions and try to get in touch with family in a more personal way so forgive me for the delay in posting to the rest of you here. Please read below for details regarding those results and please keep us in your prayers as we live each day of this journey. Also forgive me for the lack of emotion at this time as I’m not really able to speak my heart right now. Thank you

January 23, 2012
I have an update on the babies. I’m going to try to keep this as simple as possible as our heads are spinning a bit. I also want to keep it all as clear as possible (to our current knowledge) so everyone has the same information. I imagine some of this could change as the weeks continue

Let’s start with a celebration and praise that we’ve made it this far! The other good news is we officially have genders figured out and each baby has their official “letter” placement. Baby A is a girl. She’s closest to the cervix in a tight little space at the bottom of the pile. Baby B is a boy and is on my right side. Baby C is a girl and she is on my left side hogging all the room. Baby B and C are both looking fine. C is a bit bigger than the others.
Baby Girl A is our worry at the moment. On Monday we had our anatomy scan and they discovered several major problems with her. They had suspicion a few weeks ago that she might have club feet and that was confirmed. Both feet are severely deformed. One curves in at a 90 degree angle and the other is pushed down straight from what I could see on the scan. She also has Spina Bifida. It’s at L5-S1 and includes a cyst on the outside of her body (so the opening of the spine is covered) and the spinal cord is visible inside of the cyst (it comes outside of her back but is within the cyst area). She has Chiari Malformation (her brain is lower in her skull than normal and part of it is being pulled down into her spine) and as a result of that malformation she also has hydrocephalus (fluid built up in her brain). Every single one of these malformations is directly related o the Spina Bifida itself and not a unique finding. They can’t tell us what her abilities will be after birth as every case even at the same vertebra level is different. She might not survive, she might never walk, or she could walk with braces. Her cognitive abilities seem to be connected to the severity of the Chiari Malformation to some degree. To be honest – we don’t know much more than that as we’ve only briefly met with a perinatologist regarding the details and neither of us have the emotional ability to research more of it at the time. She also has a small chance of a chromosomal abnormality on top of this (2-15% although at the moment they believe it’s closer to 3% based on no other anatomical findings). If so it would be Trisomy 13, 18, or 21. 13 and 18 are fatal. 21 is Downs Syndrome and does not affect survivability.
In addition to this I continue to be dilated to 1 and have now shown some funneling (Baby A’s membranes are starting to move through my cervix). In the midst of the rest of the news it was something I didn’t get more details on so for now I continue on bed rest at home. There is nothing they can do to stop or prevent dilation or funneling in my understanding, other than relieving pressure from standing/sitting etc.
There are no medications that they can give me b/c of the multiples. There is too much risk with a cerclage to attempt it (that is via 3 doctors who have looked at my case).
The next big piece to this puzzle is the fact that Baby A will need a pediatric neurosurgeon immediately upon birth and there isn’t one in Duluth. This means that I must move to Rochester by week 24 (viability begins then). I will be staying with Dan and Amy on bed rest for as long as I’m able and then likely admitted to the hospital there for the remainder of the time.
Right now we are very much taking things one day at a time. My body has remained pretty stable in the last few weeks of bed rest and I take comfort in that but we’ve been made very aware that things can change very quickly with multiples and there is nothing they can do to stop that. So we rest in peace knowing that God is in control of every bit of this journey no matter how hard it may be. We are not thrilled at the idea of separating as a family but count it a blessing to have Dan and family in Rochester to help care for me and to help navigate the Mayo system for us which is priceless right now. Family is continually here to help with Nora as well and we are ever grateful for that. My mom has been beyond amazing as has Nate’s mom.
We very much appreciate your prayers and support as we hang onto this roller coaster. We’re a bit numb at the time and appreciate some time to let this all sink in. Every day seems to get easier emotionally in some ways as I realize more and more that I can only take it one day at a time. I live in faith that regardless of the outcome for any of these babies – that God’s plan is perfect regardless of our possible hope or heartache. We could in no way get through these days without His strength leading us every step of the way.
We love you all.
Janelle, Nate & Nora


11 thoughts on “Prayers Please

  1. Allison says:

    I know we’ve talked, but want others to know that trisomy 18 is viable. Two of our best friends have a boy who is now 6 with it. Yes, an extremely high percentage don’t make it, but I know one who has. Abby has chromosome 18q-mosaic. We also have dear Christian friends in town with a wonderful little girl who is around 8 with spina bifida. When you are ready I’m sure they’d love to talk with you :). I know you have a lot ahead of you first, but wanted you to file it away for later. we are at your disposal anytime to help :). Lots of prayers for all of you! Love you guys!

    • Kay Jeffrey says:

      Thanking God for His perfect will and peace that passes all understanding. He knows Baby A by name. He formed her in your womb. For those who do not believe no explanation is possible. For those who believe, no explanation is needed.

  2. sara roper says:

    God has seen something in you to allow you to be the parents of such beautiful blessings, praise God, i will continue to pray for the continued health of not only the mother, but these beautiful children. sara roper

  3. Barb Kilpatrick says:

    You continue to be in my prayers. I’m amazed at your faith and your ability to process this in even the times you feel you are still gathering your thoughts and strength. Praise the Lord for your faith…how do people survive without it?

  4. Daniella says:

    Praying for you, Nate, Nora and the babies every day…may God give you all strength to get through the next step of this journey! You guys are amazing and I know God is Good and he will guide you through this.

    Let me know if you need anything!!!!

  5. Shelby says:

    i can tell that your FAITH is in the Lover of your souls (not in the gifts that He gives), and your heart is with your heavenly Father, who does not waste anything, but redeems it all, in His time, in His way. we are praying for you every step of the way. and i am always a phone call away!

  6. Becki O'Brien says:

    I don’t have the words to express my sympathy for all your having to deal with. But I will be praying for you all lots and if there’s anything I can do don’t hesitate to ask. Love you!!!!

  7. bona says:

    prayers coming your way the drs in rodchester are wonderful my grandson was born with hypo plasty left heart syndrome his left side of his heart never devolped he had 3 major open heart surgeries before 3 and now is 9 and doing wondeful thanks to their team good luck

  8. Joanie Tanski says:

    I keep waking up at night and know I need to pray for you. God is with you this entire journey and is creating blessings beyond our understanding. You are in the valley now, but that mountain top is coming. Remember God promised to be with you “through” those valley times. Know how much we love you all!

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