Another Day of Doctor Appointments
15 My frame was not hidden from you while I was being crafted in a hidden place, knit together in the depths of the earth. 16 In your eyes saw my unformed body; all the days ordained for me were written in your book before one of them came to be.
-Psalm 139: 15-16
This afternoon I sat with all of our notes spread in front of me from our many doctor appointments and consultations. Tim and I were asked to read and review a basic birth plan before meeting with palliative care (or one of our many consults for the day). Except our baby girl's birth plan is anything but basic. It describes, lists, and goes into detail every possible scenario that could happen while in delivery or following delivery in the hospital. It is official, I have been listed as a high risk pregnancy and we have been told we need to deliver at Carolinas Medical Center or where all of our many Doctors will be available and on hand. We had originally planned to deliver at CMC-Pineville and after taking a tour and going over a basic birth plan we thought we were prepared and ready to go. But we know just as well as anyone else, plans change.
Tim and I both went into work on Thursday and worked until lunch until we met each other at CMC for our first appointment of the day. We both knew it was going to be a long day as we have like many days before, scheduled all of our consults in a row. It was going to be a day of three appointments in a row, meeting with a social worker, 3 Doctors, touring of the maternity floor, followed by an ultrasound and yet another consult. Although exhausting, this has become our new reality. And so it had begun. It was like a game of musical chairs except there were no chairs, just the next doctor to meet, and it wasn't a game.
We had scheduled to meet a social worker with Palliative Care in the lobby to then be taken to Levine Children's Hospital to meet and conference with the Director of Palliative care and our Neonatologist. It was there Tim and I sat in a conference room and discussed in length the birth plan and procedures for our baby girl. Tim and I had to discuss measures that may need to be taken for our baby girl to not only survive but to thrive. We discussed an emergency C-section, fetal heart monitoring, chest compressions, feeding tubes, oxygen, intubation, and even tracheotomy and ventilators. We even discussed what we would do if she was stillborn and any keepsakes we would like to keep in her memory. Although this is not easy and these are heart breaking things to discuss, these are occurrences that Tim and I have been asked to wrap our heads around. We have medically researched every possible scenario and case that we can think of when it comes to Trisomy 13 and our daughter.
After getting through our first difficult appointment, we waited in the NICU for a nurse who specialized in high risk births in labor and delivery. There we said thank you and goodbye to our Palliative care team and rode the elevator to the 8th floor to tour a labor and delivery room and then a recovery room. Although we discovered I would be recovering on a different floor then the NICU (which is 7th floor, where our baby girl would be taken if needed after birth,) Tim and I felt a little more at ease. Finally we were able to understand and actually know what to expect, and that was where we were going to deliver. At least this was one thing we could comprehend and know for sure, we knew where to go when the time comes to deliver our baby girl.
Our next stop was meeting our Genetic Counselor and heading to our ultrasound appointment at the Women's Institute. By this time, two hours had passed since we arrived and we were anxious to learn any possible new developments and updates on our baby girl. Tim and I sat in the waiting room to wait on an experienced ultrasound technician that was going to conduct our 7th ultrasound on Baby Brown. We had become all too familiar with the process. Most new mother and fathers look for their babies cute little hands or feet, or even catch a glimpse of their face. Tim and I hold our breath and pray that each time we see her on the enlarged TV screen that her heart is still beating, her brain is still developing, and her little body is still growing. We pray that all of the prenatal vitamins, supplements, and "super foods" I have been eating are actually giving our daughter a stronger fighting chance.
At this point, at exactly 30 weeks gestation, we learned that her cerebellum in her brain was still underdeveloped. It appeared there was a key hole or space present at the base of the brain in the cerebellum which could effect her ability to breathe on her own at birth. At the ultrasound we also saw that her lenses were still foggy and her globes were underdeveloped. Or as the Doctor said, "There is nothing normal that I see when looking at her eyes." We also learned that she seemed to be sucking in her lip or sucking her thumb and it appeared there was a space inside her mouth. It was inconclusive but she may have an internal cleft palate or gap inside her mouth. From our previous fetal echocardiogram, we already knew she has a moderate to large size hole between her left and right ventricle in her heart. Although she does have this hole, her ventricles have returned to what seem to be normal size and her heart is functioning as it should at this point. So in other words, no new news.
It wasn't until we were finishing our consult with the Doctor that we heard the new news which shocked and surprised us both. Our Fetal Surgeon recommended that we discuss induction at 38 weeks at our next meeting. Up until this point, we had never discussed induction or C-section as we had understood that they wanted me to deliver as natural as possible so that baby could continue to grow to full term. No longer was this the case. We now would be scheduled to be induced and at a "high risk" for a possible C-section due to the fetal monitoring of her irregular heartbeat. To me, this meant I might not be able to have a quick recovery and hold our new born daughter and help Tim make the hardest decisions we will have to face in our lives and in hers. Of all the news, this was the hardest to swallow and understand as this was never part of our "plan."
Although this was not part of "our plan" we know that God's plan is not meant to be understood. Many things in life are not meant to be understood as we are simply not strong enough to bear them. So for now all we do is wait and see and have faith that she will continue to grow, develop and defy the odds. We know she is now 4 pounds and growing on schedule at 30 weeks and 3 days. Our role now is to trust it into his keeping and so that will we do until our last and final ultrasound and Doctor's appointment on December 5th.
Tim and I both went into work on Thursday and worked until lunch until we met each other at CMC for our first appointment of the day. We both knew it was going to be a long day as we have like many days before, scheduled all of our consults in a row. It was going to be a day of three appointments in a row, meeting with a social worker, 3 Doctors, touring of the maternity floor, followed by an ultrasound and yet another consult. Although exhausting, this has become our new reality. And so it had begun. It was like a game of musical chairs except there were no chairs, just the next doctor to meet, and it wasn't a game.
We had scheduled to meet a social worker with Palliative Care in the lobby to then be taken to Levine Children's Hospital to meet and conference with the Director of Palliative care and our Neonatologist. It was there Tim and I sat in a conference room and discussed in length the birth plan and procedures for our baby girl. Tim and I had to discuss measures that may need to be taken for our baby girl to not only survive but to thrive. We discussed an emergency C-section, fetal heart monitoring, chest compressions, feeding tubes, oxygen, intubation, and even tracheotomy and ventilators. We even discussed what we would do if she was stillborn and any keepsakes we would like to keep in her memory. Although this is not easy and these are heart breaking things to discuss, these are occurrences that Tim and I have been asked to wrap our heads around. We have medically researched every possible scenario and case that we can think of when it comes to Trisomy 13 and our daughter.
After getting through our first difficult appointment, we waited in the NICU for a nurse who specialized in high risk births in labor and delivery. There we said thank you and goodbye to our Palliative care team and rode the elevator to the 8th floor to tour a labor and delivery room and then a recovery room. Although we discovered I would be recovering on a different floor then the NICU (which is 7th floor, where our baby girl would be taken if needed after birth,) Tim and I felt a little more at ease. Finally we were able to understand and actually know what to expect, and that was where we were going to deliver. At least this was one thing we could comprehend and know for sure, we knew where to go when the time comes to deliver our baby girl.
Our next stop was meeting our Genetic Counselor and heading to our ultrasound appointment at the Women's Institute. By this time, two hours had passed since we arrived and we were anxious to learn any possible new developments and updates on our baby girl. Tim and I sat in the waiting room to wait on an experienced ultrasound technician that was going to conduct our 7th ultrasound on Baby Brown. We had become all too familiar with the process. Most new mother and fathers look for their babies cute little hands or feet, or even catch a glimpse of their face. Tim and I hold our breath and pray that each time we see her on the enlarged TV screen that her heart is still beating, her brain is still developing, and her little body is still growing. We pray that all of the prenatal vitamins, supplements, and "super foods" I have been eating are actually giving our daughter a stronger fighting chance.
At this point, at exactly 30 weeks gestation, we learned that her cerebellum in her brain was still underdeveloped. It appeared there was a key hole or space present at the base of the brain in the cerebellum which could effect her ability to breathe on her own at birth. At the ultrasound we also saw that her lenses were still foggy and her globes were underdeveloped. Or as the Doctor said, "There is nothing normal that I see when looking at her eyes." We also learned that she seemed to be sucking in her lip or sucking her thumb and it appeared there was a space inside her mouth. It was inconclusive but she may have an internal cleft palate or gap inside her mouth. From our previous fetal echocardiogram, we already knew she has a moderate to large size hole between her left and right ventricle in her heart. Although she does have this hole, her ventricles have returned to what seem to be normal size and her heart is functioning as it should at this point. So in other words, no new news.
It wasn't until we were finishing our consult with the Doctor that we heard the new news which shocked and surprised us both. Our Fetal Surgeon recommended that we discuss induction at 38 weeks at our next meeting. Up until this point, we had never discussed induction or C-section as we had understood that they wanted me to deliver as natural as possible so that baby could continue to grow to full term. No longer was this the case. We now would be scheduled to be induced and at a "high risk" for a possible C-section due to the fetal monitoring of her irregular heartbeat. To me, this meant I might not be able to have a quick recovery and hold our new born daughter and help Tim make the hardest decisions we will have to face in our lives and in hers. Of all the news, this was the hardest to swallow and understand as this was never part of our "plan."
Although this was not part of "our plan" we know that God's plan is not meant to be understood. Many things in life are not meant to be understood as we are simply not strong enough to bear them. So for now all we do is wait and see and have faith that she will continue to grow, develop and defy the odds. We know she is now 4 pounds and growing on schedule at 30 weeks and 3 days. Our role now is to trust it into his keeping and so that will we do until our last and final ultrasound and Doctor's appointment on December 5th.
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