We had another appointment today in Columbus. Key items to look at were Nolan’s growth, signs of early labor, and a re-check of the brains.
Despite having BH contractions, I haven’t shown any signs of progression. No dilation or thinning. So that’s good news. But the good news mostly ends there.
I mentioned in a recent post that we discovered both babies DID appear to have part of a vermis, part of a corpus callosum, and signs of a cavum septum. Those things were no less true today, and their lateral ventricle measurements were still in the 13 mm range. No change on the items with which we are most familiar. Dandy Walker…and some unknown outcomes.
The new bad news has to do with the smoothness of their brains. She mentioned that as being a concern last appointment, but also said she wanted to watch for (late) progress at this appointment. And I think we were so distracted by what we felt was remotely good news that we didn’t HEAR the seriousness of what this can mean. Today, there was no progress. And the new term we’re dealing with is lissencephaly.
The outcome for their Dandy Walker diagnosis was wide and impossible to predict. But the addition of this issue is a bad combination. The ceiling of our “high” expectations has dropped significantly, and the floor for our worst case scenarios…has dropped as well.
In short, we still don’t know what these boys will be battling when they arrive, but the prognosis is more grim than we’ve been hoping. And our hope for any shot at a reasonable quality of life has lessened.
Hope in general…feels like it is fleeting.
Speaking of their arrival…it will be soon. Due to the fact Nolan isn’t growing sufficiently, and the gap between he and Landon has grown, we have an increased risk for still birth. With that in mind…she doesn’t want to wait any longer than we need to, so 32 weeks is our new max. I will return on August 28th for an appointment, and I’ll be admitted. Based on how that day goes, we will determine if we need to move quickly (deliver by 29th or 30th) or if we can wait until as late as Sept 4th.
Either way, the next time we head that direction, I won’t return home until I have held these boys in my arms. And until they arrive and we can make some assessments…I won’t know how long we will be there in the NICU, or if they will ever get to see their nursery.
The mixed emotions about knowing they will finally be here cannot possibly be put into words. While we can’t wait to hold them, and try to get moving on whatever help can be offered…the mommy in me is afraid saying hello may also be the start of saying goodbye. And even though it isn’t true…I feel like while they are with me, they are a little bit protected from what is to come.
Our request for prayer has never been more desperate. And we hope your response to that request has never been more diligent.
I warned you earlier this wasn’t my story, and I didn’t know where it was headed. Unfortunately, it seems today’s chapter is about heartache. But we still thank you for reading it along with us.
Oh, Mel. I’m so sorry. I think of you guys everyday and I’m praying for those babies. May God give you strength during the next few weeks. I love you.
Praying that the Prince of Peace can provide you with strength in the days ahead and that the Great Physician continues to work miracles on those precious babies! Our thoughts and prayers are with you all. Hugs.
Nolan and Landon are and will always be in God’s almighty hands. We do not know the plans God has for these two precious angels, we only know that His plan is perfect. Our place in God’s Master Plan is to love them, care for them and pray for them. When we follow the Master Plan, our lives will be blessed. God is watching over all of you, and I will continue to lift you all up in my prayers.
Praying that God will wrap his arms around L and N and bring them safely to you both!! We love you!!!
For every thing there is a purpose and for every purpose there is a reason God knows the purpose and the reason, and we pray for his wisdom and guidance in understanding. Love you. Pop and Nan
Melody: I love you and Justin. I hurt with you and what you are going thru. It seems there are many trials and heartaches in life that we don’t understand. I don’t understand how one deals with the information you have received, but I do know from experiences in my life that God is so important in your life right now. He is the comforter in these times, the almighty care giver. Lean on him for all your needs.
I love you and my prayers almost continuously are with you. I consider you the daughter I never had.
Love Jimmy
Melody, I am so sorry about your news. We have been praying for you, and will continue to lift you, Justin, Karson, and those precious babies up in prayer.
I pray for you and Justin and all of your boys daily. Admittedly, I don’t know what to pray for…..peace? hope? healing? understanding? I know surely that God knows my heart even though I have no words, just as surely as I know that He already knows Landon and Nolan and what their story will be.
I am so sorry for your continued bad news. I don’t know you but think of you daily as we go through the Dandy Walker journey as well. You will continue to be in our prayers.
I know God has a plan here – and we will understand it in HIS time. I know your faith is strong – continue to lean on Him. Many, many people are praying for you, Justin, Karson, Landon and Nolan right now and throughout the day and night. These babies are already loved beyond measure! I will continue to pray for your family as your journey continues.
Love in Christ,
Sheila Blevins
I’m praying for those sweet little baby boys and your family. May God give you strength, courage, and peace for your journey.
Melody praying and thinking of you and your family….
I am a friend of Kim Vollmer and am praying for you and your family from South Dakota. I am the mothet of twin boys and my heart is breaking for you. Your faith and strength are amazing!
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