Sarah gave a little update on the day of testing (2/1) yesterday on our lunch break, and I will try to flesh out the rest of that day a little more here.
After lunch, we had another ultrasound. If our little one is born with an aversion to cameras or having his picture taken, it may be a result of having be viewed and photographed (or ultrasounded?) - as well as being poked and prodded and cajoled - so many times in utero.There wasn't anything really new or different from this particular ultrasound (for either baby). We did get to see a couple huge yawns (he may have a future as a PacMan model) and he remained very active and healthy... and just a little stubborn! :)
From this appointment, we moved into the first of a series of meeting with people to debrief and discuss the findings and our options going forward. The first of these appointments was with a Genetics Counselor. I'm not sure if we have shared this here yet, but this type of pregnancy carries a significant increase in the odds of the living baby having some sort of chromosomal disorder. Some of these are severe enough that they might result in the baby being stillborn or only having weeks or months to live after being born. Other possibilities would be developmental delays or various other challenges for the baby to overcome. This was and is a difficult topic, and we have been challenged to face up to our fears and questions and to also stand firm for the things that we believe in. Since the time that we have learned about this possibility, Sarah and I have been firmly convinced that we want to honor the life that God has granted this child and to respect the image of God that this child bears - whatever that looks like. We have pushed back against suggestions that we do an amniocentesis to date - particularly if we felt that we were being pushed in that direction to determine if there was any reason to do invasive or difficult procedures for a baby that might not have a high chance to survive and thrive. It felt yesterday like there was a general disapproval that we had not done this to date and, at one point yesterday afternoon, we were becoming concerned that one of the options that we would be presented with was the need to do this test and wait for the results (it takes 7-10 days to get the results back) before moving forward.
We had been told that there would be a team meeting (maternal fetal doctors, obstetrics doctor, nurse, midwife, genetics counselor, and any other random people that could squeeze into the room with us) at the end of the day yesterday at which point we would be presented with the findings of the day and work with the team to determine the best path forward. This was generally a positive meeting. All the findings continue to confirm that our living baby boy is healthy and growing well. There was some concern (the same as listed from the original fetal echo sonogram) that his heart is slightly enlarged and will continue to have to work harder and harder to support the enlarging of the acardiac twin. The concerns of our doctors in Minneapolis and the consultation that had brought us to Cincinnati were that this acardiac twin will continue to increase in size and thus increase the chances of heart failure in the living twin (called the pump twin - because his heart is pumping for both of them).
The consensus out of this meeting was that the best next step was to do the surgery/procedure called a radio-frequency ablation (RFA - there is a link that describes this procedure on the post from 1/28). Sarah and I agreed with the doctors that this was the best decision to make, even after listening to the laundry list of potential problems that the doctors are required to tell us about. There are relatively small amounts of risk for Sarah and the living twin (infection, ruptured membranes, pre-term labor, etc...), but the statistics and percentages that we were given seemed to significantly be in favor of doing the procedure, and beyond that we feel that God's hand has brought us to Cincinnati and that His peace is guarding our decisions. We are also going to have an amniocentesis done at the same time - there is not any real increased risk to do this with the other procedure and we are being strongly encouraged (not required, but strongly encouraged) to take this step to help us and others prepare for whatever will happen. We scheduled the surgery for the next day (Wednesday, 2/2/11) at 9am and we have been told that an average time for this surgery is 90 minutes and that the best case scenario is for Sarah to have several hours (at least 6) of recovery, but that she could be released after that if there were no other warning signs. We would then need to keep a follow-up appointment the next day (Thursday), but if everything still looked good there, we would then be able to travel home after that. This procedure involves cutting off the blood flow to the acardiac twin and is not 100% guaranteed - there have been cases where the blood flow would resume even after the procedure was done or that there were other ways for the blood flow to connect - but it seems to us that it is the right decision to make right now.
I commented above about our strong views about protecting and honoring the life of the living twin, no matter what challenges he and we may face. To be brutally honest, something that both Sarah and I have been wrestling with is that this procedure seems to cut off a source of life or growth for the acardiac twin (when I have asked what has been growing over the past several weeks - the answers that I have heard have been that the tissue and the sac are growing in the amount of fluid that they are holding and that there are potentially cysts and other things like that growing as well - the growth is not reflective of further development of organs or structure or a heart or anything like that). Some of this struggle stems from a general uncertainty of what is really happening and we will also acknowledge that some of it stems from the reports we have heard from a couple people who have said they are praying for a miraculous healing and development of both twins. We are grateful for everyone that is praying for us and amazed by the technology that allows us to know as much as we do right now. We are even grateful for the struggle that God is leading us through to understand His heart for these boys and to wrestle through these challenges with Him at our side. We have never heard or seen a heartbeat from the acardiac twin (as far as I am aware, he never developed a heart) and we feel a sense of peace (in the midst of this struggle and difficulty) that the decision to move forward with this procedure is the right one.
We have been praying for these boys and asking for God's presence to be upon all of us and for His purposes for these children of His to be revealed. We rejoice in the truth that God knows all things and loves all people and has a plan for every single one of His kids (no matter how old or young they are). We have a strong sense of peace that we will be joined together with our sons at the time that God intends - with one in this life and with the other when we meet before God's throne in heaven. We invite you to pray with us by name for these boys. We plan to name the pump twin Levi (means "combined" or "joined in harmony") and the acardiac twin Malachi (means "messenger of God" or "My messenger"). We are still negotiating on middle names, but we feel that these names give words to our strong sense that Levi will be joined to our family and that he will also always be joined to his brother. We also have a strong sense that Malachi is already welcome in God's presence and being celebrated in heaven and that his story will be a clear message from God for many, many people.
Thanks again for your prayers and support! It has been incredible to recognize that we are not on this journey alone and that so many people are praying and sacrificing for us and for the miracle babies that God is supporting and providing for even today.
"Now to Him who is able to do immeasurably more than all we ask or imagine, according to His power that is at work within us, to Him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen. " (Ephesians 3:20-21, NIV)