I have to write, if only because it is how I need to process at this moment. If you choose to read this, please forgive what may seem to be disjointed thoughts. I am wondering through a new place with little direction. We are.
The news from the high risk Dr. was far more grim, in a very short time, than what we ever anticipated. Grim and not so grim. The fluid around Bryce was right at 8CM last week and 2.3CM around River. Enough to be disconcerting and possibly ominous, but it did not classify as emergency status. Today’s measurement, one week on, River was wrapped so tight with only 1CM of fluid and Bryce was swimming around in 10CM of fluid. That put us in class 1 Twin-to-twin transfusion and qualified us for fetal laser surgery. Further inspection revealed that River did not have a bladder. That tossed the boys into class 2 TTTS. Fear, pain, I don’t know what came first, what came hardest, what all was in there, but I felt weak, sick even, and tears just strolled out of my eyes with little regard for good social practice. Nicole as well. Then she pulled it together better, quicker to muscle our way out of the office, though once she was alone in the car, she fell to pieces. We are awaiting a call from Cincinnati Fetal Care Center where we will go shortly for an evaluation and probable Fetal Laser surgery. They will attempt to ablate the vessels moving the blood from River to Bryce, thus hopefully halting the advance of this condition. Things look promising though. There is around a 70% chance statistically speaking that we will carry both boys home one day soon. There is a 90% chance we will at least have one with us.
I was in rehab with a guy that lost his son in the first week of his son’s life. He was holding his boy when he passed. He was never able to heal, rather, he retreated into booze and drugs, he and his wife, they just ran from what they could not face. He said his heart turned black, like a rock, dead –it is how he managed to carry on. I have known others that lost a child, an infant, we all have, and I have always said, “I cannot imagine” and “I don’t know how you would begin to recover in a healthy way”. I can empathize, yes, but only in a fractional way. Because I literally cannot imagine, I literally cannot go to the feelings they must feel. I can imagine from afar, but that is all. We have not lost a child. But I also never anticipated having to confront the possible loss of a child. And some will scoff because they are still choices, they are not born yet. And we say their faces today, their legs, arms, hearts – we saw our little boys so close it was as if we were holding them. I never knew I could love something so much that I have not even held before. Yet there they were and the attachment was real and intense. And the Doctor confronted us with the possibility that they were slipping from us. Thankfully, we live in 2013 and there are now tools to deal with this that did not exist 20 years ago. 20 years ago we could maintain little hope they we would have our sons at home on day. That has changed. And Ironically, our Doctor told us that the Europeans have the most advanced tools for fetal care, things they have been doing for years are just starting to reach the states. Regardless, our doctor who trained in Fetal surgery had complete confidence in the folks at Cincinnati. We have good reason to hope. But we have to walk through the fear, the shock, the pain to get to feeling the comfort of hope and faith.
I suppose a reason that the shock and fear seems so gripping right now is because how rapidly things progressed. We fully anticipated monitoring their conditions and held strong hope that things would stabilize and not progress from our visit last week. It was hard to see River in such tiny confines, such dry conditions, barely able to move, while his brother Bryce has a super size pool to move around in and to know that River was pumping that extra fluid in to Bryce’s house out of his own. River is the donor, it is through him that everything is passing to his brother and the disparity in size has just started to show, to diverge with River now 20% lighter than his brother. In a week. That is halting.
So I don’t know what to do. We feel so much and at any given moment those feelings may change. We are so encouraged by the love of so many, the prayers of so many saints, so many brothers and sisters of ours. I cannot imagine charting these waters without that support. So, knowing that God has given us you and us to you to uphold and support one another in this life, I am going to give explicit prayer requests
1) Nicole’s trachea is closing fast. Her airway seems obstructed to the point it was last time we were rushed into surgery. She will see Dr. Hunt tomorrow and my concern is that he is going to call for surgery on her as we have to head to Cincinnati to save the boys.
2) Nicole’s spirit has remained overall steady and strong even though the nausea and vomited has become resurgent and she has been confined to less and less movement. Pease pray that God would guide her heart and let it rest in faith, knowing that our God is Love, not like love, not loving, but He is Love and that love belongs to her, Bryce, and River as well.
3) Please plead that the surgery is a success and that the boys recover and begin to develop steadily to birth.
4) Things at work are in a bit of an intense phase for me. I have been working as hard as I can to complete construction on my projects at the house so Nicole can have a working bathroom when she is bed ridden and I have done my level best to give all the time I can to she and the kids, time I need and the addition to our house for the coming eight and ninth child have begun tossing our environment into more chaos. I have not had time to “take care of myself” and have been muscling my way through all that must be done. Yet I am an alcoholic and when I muscle too long, that old demon starts to call for me, promising unwinding, escape, some RnR. It is a lie and a trap for a man like me but I would be lying if I said I was not concerned about my recovery.
5) Pray that the Lord would guide our hearts and pull us both closer to Him and to one another through this.
6) And please pray for our other kids who adore their sister Eden and are so excited about the boys and who will be cheated time and affection from us for a spell when they may even need it more.
Right now I want to pull my kids in close and hold them tight. I want to take them all to Ohio. We are a team. We are one for the other. God has sewn us together so tightly that we are strong unit bound in love by faith. I had this moments heartbreak knowing that we would have to leave all our kids behind for a while and I miss them any day I cannot hug them hard. And right now I am inclined to pull them all in closer and huddle up, but we are going to have to leave them behind. That does hurt. But I believe this trial will mature us even more and build our family up in the end. I believe that what happens to the children of God. I believe that even though things do not go our way, and even though there are things that pummel us with pain, in the end, for a child of the King, we are made stronger, more whole, more connected when our hearts remain open to grace and our minds listen to what these things have to teach us and tell us.
And Finally, please hold up Jake, Katie's son who is having surgery next week at Vandy to repair holes in his heart as well as Nathan and Katie. Please hold up my Dad who is around six months into his wait for a new heart on the transplant list and to our beautiful Martha who is waging a war on her cancer al-natural.
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