The boys are ONE WEEK OLD today!
Today’s medical updates!
The only real change today was that they started them on caffeine. Also, J and I gave them baths this evening. Our first time!
The high level chromosome and the more detailed microarray results came back…normal. What that means is that we’ve ruled out diseases that include “count” issues, such as too many chromosomes, or a missing or duplicate gene. (A common example would be Downs Syndrome.) One particular disease that applies to us in this category is Miller Dieker. So we learned a little about what the boys do NOT have. That information was being passed on to our Geneticist, who will likely meet with us soon to discuss next steps. I believe the next step would be to look for gene mutations. That is more complicated, and might be a wild goose chase. It may make sense to wait and learn more about the boys, then see if we have any clues so we know what to chase.
The MRI was today at 5:00! J went in with L and Mima and I went in with N. Radiology was dictating it tonight, and we are hopeful that we can have a conversation with the neurologist by tomorrow afternoon.
While we were in there, one of my first thoughts was that we were finally getting the MRI and the revealing images we need to understand our boys better. This will paint the picture.
My second thought was…it really tells us nothing. Don’t get me wrong, we are still eager to see the brains, and understand their structure. But regardless of the images, and however bad they may be, the boys have already shown us they don’t always follow the rules. So a picture will tell us nothing about THESE boys. And even if the images ARE bad news…that won’t take away how thankful we’ve been for their strength and success thus far, and how much we believe in their ability to overcome.
My prayers through this journey have changed often. I posted early on about the long list of things I had been praying for. Around the last few weeks, perhaps after N surprised us all with his growth, I most often simply prayed… “I trust you”. The last few days, as we approached a certain birth, I just asked God to be undeniably present. Present at the birth, with the boys, with the family. Either in their amazing recovery or in our ability to grieve if needed and find the meaning in all of this. As the beeps and groans of the huge machine surrounded my tiny boy this evening…I prayed again…”please be here now, be present in this testing, the results, and in our ability to deal with this, with our teeny tiny guys in this big big process.” Clear as day, over those same beeps and groans, I felt the response. “I’ve been here all along”.
Jeanne Snyder said:
Happy Birthday! As the Gateway staff gathered this morning, I couldn’t help but think of a week ago when Ben left to be with you. You are all in our personal prayers as well as a staff. We are just “watching” with you at all God is revealing as His answers. He is present…there is no doubt…what a beautiful Rinker family He has created:) Thank you, Jesus!
kristina nichols said:
Amen! And He will never forsake you!
Jeannie Wood said:
May our gracious Lord bless and keep you as your journey unfolds. You have become an inspiration to many. Those boys are angels touched by God’s own hand and I pray He will give all of you grace sufficient with each new day.
Kathy Strawn said:
What a beautiful Mama in that picture with N :)!
I believe L is smiling.
Melody and Justin your 2 little miracles give me something to Praise God about in the midst of all I’m going through. Thank you for the willingness to be so vulnerable and share your story. I miss you guys and am praying from afar over those 2 little boys.
Paul Meagher said:
I’ve been following the boys daily progress and think it’s just great. Every time you mention a test followed by a “…..normal” I breath a sigh of relief for you and the boys. I believe that’s a smile I see on L’s face, what can be more beautiful than a baby’s smile. Being a pharmacist in the outpatient dept. of our local hospital we provide many unique products for our “very special” NICU babies when they go home. We frequently interact with the parents and I love it when I can provide something extra to help in their childs care. We can also follow the little ones progress to some extent by watching their med doses go down as they grow older and stronger. The pictures are great and the progress is so impressive. Your little guys are real fighters and Sandy and I continue to hope for the best for the whole family.
Pamela Surber said:
Oh, how precious these boys are!!!!!!! Love the smile on L’s face..You are so right Mama, God has been there all the time…Love you family..
Sharon Morrow said:
Yes I believe L is smiling at you. They are so beautiful. And you’re right God is with you always through everything. You’re also right about what the MRIs show or don’t show. Try not to focus on everything they say they won’t do because my boys are a testament as to what doctors have said they couldn’t do. I know in some people’s eyes they may not see perfect boys but they don’t know what we were faced with in the beginning and told. These boys along with God’s help along the way have surpassed what they said they wouldn’t be able to do. We just tried to take it day by day and do as much as we could therapy wise and trying to find new ways to help them get stronger, etc. God has gotten them this far as well as their determination, and I am so thankful for that. Thank you so much for sharing, you are so gifted with your writing.
Beverlee Dowdy said:
Enjoyed the post….as always. I love to see the word “normal” following the word “results”. These 2 precious boys are fighters. As far as rules, they have their own. 🙂 I love when the presents of God are felt and seen, as with your family. Love pat your 3 little guys for me and share a hug with your big guy! ❤
Jennifer Wilson said:
You are so very strong. God is always with you. Always. Praying for all of you!