For those who have been connected to us on Facebook, this will be familiar terrain, but for some who may stumble across our tale of late and find it compelling or curious, here is the overview of where we are and what this is about.
With a family of six including our Eden, less than a year old we learned we were expecting again. Upon our first ultrasound we found two hearts, two heads, yes, we were having twins. We were immediately considered high risk simply for having spontaneous twins, but after Nicole was was intubated a second time in the coarse of the pregancy, still early on, for a tracheal dilation (she has idiopathic subglotic stenosis), we switched doctors to one remarkable and caring Scott Harnsberger. In his first ultrasound he told us more than we had ever known, he also determined that our babies must be identical because they shared a single placenta and that the placement of the placenta was against the cervix, or, placenta previa. Nicole was put on pelvic rest and told to keep a slower pace because of this. At that time he told us of potential dangers associated with monochorionic twins including a disease of the placenta called TTTS or Twin-to-Twin-Transfusion Syndrom. About 15% of monochorionic twins are diagnosed with this disease and it is almost certainly fatal without intervention. And so it was.
I was in Knoxville when Nicole went in for an ultrasound early February with Dr. Scott and his face turned pale and he ran out of the room to make a call. She was headed straight over to the high risk team where she was seen by Dr. Lam who handles TTTS in Chattanooga. He told us that we were almost there, but we could not yet be classified with TTTS because though one of our twins, Bryce, the recipient twin had 8cm of fluid, the donor was still above 2 at 2.3cm. The signs were not good but there was no firm diagnosis. The next week we went back to Dr. Lam who sent us into tears when he said we were certainly stage 2 TTTS (fluid imbalance greater than 2 to 8 and no visible bladder in the donor) and would require laser surgery in Cincinnati at the Cincinnati Fetal Care Center. By that night we had received two calls from Mel, our nurse coordinator at Cincy Childrens and we were on the road by noon the next day. The following day was 8 hours of tests and consultations and it was determined we were stage 3C. River, the donor had only .5cm of fluid, Bryce was over 12, and there had been significant damage to Bryce's heart because of the excess fluid and pressure. River was trapped in nothing of a sac with his face planted against the placenta and Bryce had a mansion to move around it. We stayed in a hotel on bedrest over the weekend then she went in for surgery on the boys in Utero to ablate the offending blood vessels and hopefully more equalize the boys supply. The procedure was a success, the boys survived, and though we stayed in Ohio for five more days till our followup, things were improving dramatically, but not everything. It was bedrest and pelvic rest for the remainder of the pregnancy for Nicole.
The Fetal Cardiac team suspected that Bryce may have a congenital heart defect of the tricuspid valve but there was really no way to tell because often these leaks or heart issues in the recipient correct themselves over time as things remain in balance and their hearts begin to heal, however, 5 days post-op, there was no change in the severity of the leak. So we went home to once a week visits with the high risk doctors and one with Dr. Scott. About 30 days on, Dr. Kipikasa who is the fetal heart specialist in Chattanooga was concerned about the enlargement of Bryce's heart and the continued pace of his tricuspid leak so he sent us back to Cincinnati for another full Fetal Echo. After than, we returned to Chattanooga for twice a week heart checks of the boys. Because Bryce's leak was so sever, there was consistent risk of precipitous fetal demise through heart failure and because the boys are connected, there is also a risk that if one of the boys were to die in the womb, the other would as well. So we had to watch constantly and closely for any sign of deterioration. Then one month later Dr. Kipikassa thought it was time for us to return to Cincinnati for another full Fetal Echo and consult with the cardiac team here. We were coming close to 29 weeks gestational age. Dr. Kipikassa finally admitted when I pressed him that Bryce did appear to have a congenital heart defect and he thought it may be Epsteins' Anomaly a very rare disorder with the tricuspid valve. Before we left for Ohio again, I reached out to Boston's Children's at Harvard because of their leading work on Epsteins' and Displastic Tricuspid valves. Dr. Rathod called me that night on his cell phone and taught me more about what we were up against than had anyone to date. He said we would need to be in the city where we would deliver by 31 weeks and that Chattanooga was out of the question. Dr. Scott had already surmised that and had been nudging me to prepare for an extended stay out of state. So it was either Boston or Cincinnati.
Things became more complicated though. Our ultrasound in Cincinnati revealed that the boys were now Mono/Mono as in monochorionic as well as monoamniotic - ie, single sac, single placenta. The sac the boys were in had also separated from the uterine wall and there was fluid transfer from inside to outside the sac so our high risk became significantly higher risk and Nicole as admitted to Good Sam for hospitalized bedrest and we were prevented from further travel because we require very frequent monitoring. So here we are today, some two weeks later, almost to 31 weeks and I am at the Ronald McDonald House and Nicole is at Good Samaritan close to Cincinnati Children's and our plan is to deliver here and River will be kept at the NICU at Good Sam but Bryce will be transfered to Children's CICU. And our list of complications grew a bit longer still. Nicole was diagnosed this morning with gestational diabetes as well. But our boys have kept growing very strong, for very long in spite of all the obstacles. TTTS, Displastic Tricuspid Disease in Bryce's heart, monoamniotic, monochorionic, amniotic separation, diabetes and our boys are doing great. Bryce has tolerated his condition miraculously well and though his heart is 50% of his chest cavity, significantly enlarged, it is not dangerously enlarged and his lungs are developing and functioning. So if you are catching us here at this point, that is where we are, at almost 31 weeks on hospitalized bedrest 5 hours from home and our six kids, turtle, guinea pig, dog, and fish during a major construction project to add onto our home. Peggers (Frank's mom) and Kelly (Frank's sister) brought our six kids up this weekend for a visit and though I brought five of the six up last weekend as well, it was Nicole's first time to see Eden, our baby girl since we left for our last fetal Echo. Our next growth chart is tomorrow and our next Echo is Tuesday morning and after that, the MFM and Fetal Care team will arrange a consult to discuss a plan for delivery. God has been remarkably good to us in spite of these trials and we feel very blessed by His love.
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