I was going to write after the ultrasound tomorrow, however, after a long talk with Dr. Lim, our primary surgeon, I decided to go ahead and give an account of Nicole and the boys tonight because it seems most likely we will learn very little tomorrow morning from today about their state. But lets start with the good news, news that seemed even better after having received so much news that seemed to be dark, bleak, and nightmarish for so long.
Bryce and River survived the laser surgery. That is huge. The doctors also estimate that the Donor, River, has a 40% share of the placenta production whilst Bryce has 60%. That is superb news as well, but it is only a guess though a good guess and both connections are membranous rather than direct. Huge questions remain about the production of the placenta, but that will come in a bit. They were able to drain off 5lbs. of fluid from Bryce’s sac, or, a two liter bottle plus a glass worth. That took about two months artificial growth out of Nicole’s belly and relieved her of tremendous pressure and discomfort. Bryce now has 3.5cm fluid rather than the 12.25 he had just before the procedure. River was down to .6cm, or, almost plum dry, but he may not begin to generate surplus or waste for several days, if ever. The ENT surgeon did dilate Nicole’s trachea and gathered a bit of good news there as well. The stenosis is lower than previously believed. It is about 2cm below the vocal cords. This means that they CAN perform Tracheal Resection, meaning, they will cut out the affected part of her airway and rejoin the other portions, and this can be done without having a dramatic impact on her voice. There are only a handful of hospitals that perform this procedure, Cincinnati performing the highest number in the world, so we will certainly travel back here to have that operation after the birth of our boys, God willing.
Tomorrow’s ultrasound will happen primarily to tell us if the two boys survived the initial shock from the vessel ablations that occurred. They selectively cut 9 connections between the boys and had to cut two, or more, unselectively because there was no way to access the connection point behind River who was pinned so tightly against the placenta and if they cut most but not all, as we learned today, the twins would decline rapidly and die. Without surgical intervention, it may have been only a matter of days, maybe weeks before both River and Bryce were lost, but their chance of survival was 0 based upon their diagnosis and the progression of the disease. Nicole will be kept on bed rest the remainder of the pregnancy primarily to direct as much blood and nutritional supply as possible to the two babies who have a long road of recovery ahead. While there is no evidence that bed rest will prolong gestation, there is evidence that momma’s exertion directs oxygen and blood to her organs and muscles offering less to the placenta. The bedrest is to give the boys the best chance of having the placental supply needed to survive.
If Bryce’s heart shows mild signs of improvement this Friday in the Echo Cariagram, we can be encouraged by the belief that he is healing and that healing can continue to restore his heart to normal over an eight week period. The level of damage his heart had sustained was classified as sever, so they estimate a good eight weeks of healing to undo the damage cause by the disease of TTTS. The great concern for River and the things that Dr. Harnsberger (who will again assume a leading role in our care) and Dr. Lam will be looking for is a growth pattern that is somewhat normal and while he will be smaller, somewhat mirrors the growth of his brother though he may remain 10-15% behind. Decline in his growth over the coming weeks relative to his brother’s would be alarming, suggesting he does not have adequate placental supply to develop his lungs and breathing capacity. We are tentatively slated to head home this Friday, but Dr. Lim did warn us two times today that we may be held longer depending upon the test run this Friday.
If River and Bryce can be adequately fed by the placenta, our greatest hope will be that we make it to at least 30 weeks before delivery because that amount of time would be essential to help River overcome the developmental handicaps he has endure thus far though he will never overtake his brother, nor even pull even with him, that is about the bench mark guess for him to have viable lungs and reduced risk of neurological disorder. That is also the benchmark time estimated for Bryce’s heart to rebuild and recover from the damaged sustained thus far. 32 weeks is far preferable and 34 would be practically miraculous for this pregnancy. So, having jumped a major hurdle today, our focus and prayers orient a bit differently.
1) That we learn over the coming days that the surgery was fully effective in curing the disease by severing all the exchange of blood.
2) That the two unselective cuts they were forced to make would not deprive River of desperately needed blood and nutrient supply
3) That River’s sac would begin to fill, his bladder begin to fill over the coming days suggesting that he does have adequate placental supply
4) That the placenta is healthy enough to provide both boys the supply they need to recover from this disease.
5) That the gestation would carry on long enough to provide the time needed for healing if that supply is adequate.
6) That Bryce’s heart would show rapid improvement, first as demonstrated by the two valves that are presently leaking to begin performing with normal function.
7) That Nicole would continue to hold a hopeful outlook and a watered heart even though she will be severely restricted in her movements over the next few months. That she would neither loose patience, nor would she push herself too hard as she will no doubt be motivated to interact more actively with our other children, especially Eden, and to connect with her support system and community.
8) That in her ‘handicapped’ condition she could continue to be encouraged by the prayers and connections of friends, family, and church family.
9) And for myself that I will not loose sight of the goal – the full term rescue of our boys – as my burdens grow even heavier with her limitations and as the full nature of our relationship must change for a period of time, estimated to be 5 or 6 months. For me, loosing sight of the goal and the incredible burden and sacrifice Nicole must make would look like my loosing patience with her perceived lack of support in the burdens of the home or becoming impatient with our mandatory “marital” separation for an extended period. And if you don’t think I am capable of forgetting the goal, or that I am capable of forgetting what she has and is enduring if I focus on myself and my perceived needs than you don’t know men very well. And I am man, and I am capable of blatant stupidity, childish impatience, or downright selfishness. May the spirit of God guide my own heart out of self, into joyful surrender to my wife and my family and may I not be tempted into self-pity.
10) That the same spirit will guide Nicole and also help her to win the battles she will face against bitterness or self-pity.
11) And may our children be patient with us as well as they are asked to do more, to make sacrifice, and to put their own desires aside for the sake of the whole
We are not the first folks to endure a difficult time. We are not the only folks we know to endure a difficult pregnancy. Not by any means. I have heard stories of heroes from among my friends who endured great trial and heartbreak but held to their hope and faith throughout.
May God use this to call us all, Nicole, myself, Elise, Thomas, Sophie, Ani, Kai, Eden, AND Ryon to further sanctify us and draw us together even stronger as a family as it will require surrender of self on all our parts, as well as the loving hand of the giver of life to see these two beautiful boys to the other side. May we take joy in being poured out for one another. May we find great satisfaction in laying aside our designs, our plans, our desires for another in the family that may need our support. And may our family shine the light of the Love of our redeemer in a way that makes folks take not of its source rather than its reflecting surfaces.
And to our friends, our community, our church family and our wonderful family who have encouraged us, helped fill us and sustain us thus far: please again accept our deepest gratitude for the role you have chosen to play, any burden you have chosen to bear on our behalf. Nicole was in tears after she came too and started collecting her wits once she absorbed that the boys were alive, when she read your emails, FB posts, heard of your prayers and took stock of how many had already volunteered to help with meals and childcare. The outpouring of Christ’s love by his saints is enough to make any bitter soul take a second look at that band of broken folks who are not given to religion, but given to a living, eternal, and endless love ultimately expressed in the redemptive sacrifice of Humanity’s greatest lover: Christ.
PS- I believe further updates can be far more brief as I will try to offer news on the boys as it becomes available for what it is worth. Thank you for your love, support, and prayer.
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