To all of our friends and friends of friends and brothers and sisters to whom and for whom we are deeply grateful ...
After 12 hours of testing and consultations and feelings we cannot begin to put our fingers on, we are in our room, wiped out in every way but I wanted to briefly outline where things stand with Nicole and the boys. We really cannot thank you enough for your love and support. Nicole said to me tonight after our return to the room: "I think I am starting to understand people who have a major life event that permanently changes them". As our wonderful Dr. Harnsberger in Chattanooga said to me on the phone after all the proceedings were over: "We know in our head that God is in control and soveriegn, but sometimes it takes a bit of time to seep that down into our hearts". We are not alone. Many who may read this have been through sleepless nights, tears and tears of agony, pleading and waiting in the great and terrible unknown. We have been encouraged by some who have been there, endured with hope and seen amazing things come to them through the love and grace of God.
As many of you know, there are two things we are dealing with and both will be treated simultaneously. Nicole is diagnosed with Idiopathic Subglottic Stenosis. This means her trachea closes recurrently and they have no idea what is causing it. The Cincinnati ENT team has taken on her case, but, they have only treated this condition 30 times and they are among the worlds leading centers for Airways disorders. This means they will operate on her airway along with the operation on the twins in the womb but this will again be a short term remedy to the symptoms rather than a long term solution. I will get to that in a minute.
The TTTS – Twin-to-twin transfusion disorder was determined to be stage three which means that the disease is both rabidly progressing and causing severe strain on Bryce’s heart. His blood pressure is tremendously high, the walls of his heart have thickened and he has two valves leaking. Pressure in one side of the heart is 50 over ten when it should be ten over ten. This stage means that they cannot manage the condition with serial amnioreduction. The disparity in the space they occupy is tremendous with Bryce having roughly 11 times the space and fluid as his brother who is literally wrapped tight and pinned against the placenta. They will be seeking out all of the offending blood vessels running to the boys and cutting them with laser. There could be ten, there could be 40 offending blood passages to cut so the procedure will take some time. Then they will drain the excess fluid from Bryce’s sac and finally put a small puncture at the base of River’s hoping they will equal out a bit. One complicating factor is that neither of the boys is attached to the placenta directly, they have membranous connections but seem to be serviced well indirectly and their size disparity is not as pronounced as we were told in Chattanooga by Dr. Lams office which suggests they may have good and acceptably equal access to placental supply. After this procedure which may last up to two hours, they will then put Nicole under general anesthesia and the ENT surgeon will attend to once again dilate her airway.
The odds are good but also frightening. They tell us there is a 30% chance statistically speaking of loosing one of the boys consequent to the procedure. However, to do nothing we will most certainly loose both. But that gives a 70% chance survival of both with a 90% chance survival of one of the boys. If both boys survive the trauma of surgery, the next 24 hours is very crucial to see how they will react to the tremendous change in blood supply. The third hurdle is the next 72 hours to see if they can engage in recovery of if one or both begin to decline. After that, if we can make it to 31 weeks gestation we have very good reason to believe we will have two healthy sons. If they are born even more premature, the odds of long term neurological disorder increase to a 20% chance in TTTS kids. This means that Nicole is put on bed rest and pelvic rest the remainder of the pregnancy. She has been instructed not to stand to prepare meals, or transport loads of laundry or even to lift Eden.
The long term fix for her Stenosis is complicated. There are no attractive options but the team up here is going to work hard and creatively on a viable long term fix after our two boys are born, God willing. All of this means that we as a family have to reach out and actually seek help over the next two or three months . Provided our boys survive and carry on growing and healing, we have no idea how we can pull this next few months off logistically. We welcome help.
As for me, though I become filled with fear from time to time, our sleep is spotty, and tears still manifest spontaneously as my mind plays out the possibility, I am also convinced that God is speaking to me. Not only through you and your love, prayer and support, but through these trials and tragedy. I have been put through many painful fires, many self made though directed for a purpose, but fires that had to burn, and burn hard and furious to enable me to hear, to move, to grow. This fire is raging and it is one I did not light. I have messed up my affairs in myriad ways to learn myself some lessons, but here I am being spoken to from a place, a deep, moving, terrifying, penetrating place I have not had to listen from before, at least not to this extent. But I become more convinced that as I walk through the pain, the fear and the unknown, I am being taken some place I need to be but I am not sure where that is or what it looks like. I do believe that in listening and leaning on the power of God (BECAUSE I HAVE NONE, NO, LESS THAN NONE TO AFFECT an outcome I so passionately desire), I believe there is another level of purging that has to take place. Regardless, whether this growth will occur through weeping or rejoicing, I implore you to carry on pleading, interceding for our son's River and Bryce, that we might all be blessed by their lives, their smiles, their laughter and that God would be most glorified by life.
Yours in love and Christ,
Frank, Nicole, Bryce, River, Elise, Thomas, Ani, Sophie, Kai, and Eden
No comments:
Post a Comment