(Photo Credits to Snap Happy Studio)
I posted a very shortened version about the announcement of our sweet baby boy #2 on Facebook, but I wanted to type out our story so far just in case it can help someone going through something similar with their kiddo.
We found out October 5th that we were pregnant with #2. This came as quite a shock as we were actually trying to not get pregnant. We were trying a scaled down version of the natural family planning birth control and I guess that since I was still breastfeeding Aden at the time, my cycles weren't quite regular enough to avoid fertile days just by counting. Selfishly, I was quite emotional after finding out. It wasn't the plan. I wanted to give Aden my full attention for just a bit longer and the idea of a new baby didn't quite fit into the scenario. We knew we were going to be moving to Fort Benning, GA for Seth's career course and this baby would be born right at the end of the course. A brand new baby right at a big move just sounded entirely too overwhelming for me. It took me a little while to become excited about the new baby so we avoided announcing the pregnancy.
The holidays came and we knew we would be travelling home to Texas and wanted to tell our families in person about the new baby. I was right around 15 weeks when we told our families. We had family pictures done and took an announcement picture with Aden. So I wanted to wait until we got the pictures back to announce the pregnancy to everyone. Then we set up our anatomy scan with our new OB here and I wanted to wait until after the scan, just to be sure that everything was ok before announcing the pregnancy.
That scan was on Jan 13th. I was 20 weeks and 2 days. We had decided to find out the gender and when she said it was a boy we were both so excited and over the moon. She didn't give any hints that something was wrong. When the doctor came in to talk to us, she explained that the baby's ventricles in his brain were enlarged--ventriculomegaly. She didn't give us any other details of the baby's anatomy but told us that she was concerned that it could be a trisomy, a chromosomal abnormality. That word didn't quite mean anything to us at the time. She informed us that several of the trisomies are fatal and that she was mainly concerned about one- Trisomy 18- and that she recommended the screening test (NIPT) that can tell you your risk of having a Trisomy 13, 18, or 21 baby. She set us up with an appointment to see a high risk doctor, a maternal-fetal specialist, two days later.
That scan was on Jan 15th. At that scan, they informed us that he had spina bifida, club feet, an atrial septal defect (heart), a ventricular septal defect (heart), and that it was possible that his aorta opened up at his ventricular septal defect (bad). They again informed us that they were quite certain that it was Trisomy 18 and that our baby would have very little chance of living to birth and little-to-no chance of living past his first birthday. They didn't even talk about closures of his spina bifida, as they said most doctors will not do surgery on a baby with a poor prognosis. They made some appointments for me to have an MRI and echocardiogram done much later in the month to evaluate all of his issues and vaguely talked about being transferred to Atlanta for his birth where they had resources for grief and places to accommodate him for the little life that he would live.
Jan 21st I had a follow up with my OB who informed me that our NIPT results came back negative, but she still was certain that there was something chromosomally wrong with him and that his prognosis would be poor.
Seth and I decided that same day to schedule to have an amniocentesis done. We had previously been so against it. We knew that without those results, most specialists wouldn't be able to tell us if they would be able to perform surgeries on our baby boy after birth. We needed to know. We needed to plan. We needed answers about whether to grieve or whether to have hope.
I had the amniocentesis on Jan 29th. It was pretty scary. My mom flew out to watch Aden. It was a very busy day in class for Seth and his leader informed him that if he missed it, he would have to recycle to the next class. We know that he will eventually have to be pushed back to the next class, but want to delay it as long as possible. So I went alone. In the waiting room, all the women were talking on the phone or to the people with them about the size of their babies and were so excited. I was so scared and so sad and couldn't help but get super emotional right before they called me back. During the amniocentesis, they used sonogram to identify a pocket of fluid far from little guy and the cord/placenta. She inserted the needle and pulled back the metal part, leaving a plastic catheter. Little man immediately became interested and started playing with it. He seriously did not leave it alone the whole time it was in there. In that moment, I so wished Seth could be there. Everyone had talked about our baby as if he was not going to live. In that moment, seeing him playing with a "toy" he was just a baby. It was so amazing.
Then came the waiting..
My MRI was scheduled at a children's hospital in Atlanta for February 5th. I had never had one before and only knew about the vague description I had given my patients about what happens in there. I was so surprised at how much anxiety I experienced during the test. We talked with a radiologist right before the MRI and she explained that they would give us rough results that day (we had no idea. we thought we wouldn't know until our doctor's appointment the next week) and that it would take less than 30 mins for the test. You have no idea how much time is passing while you're laying in there. I was trying so hard to stay calm, but those noises sure know how to get to you. Little guy was doing all sorts of tricks in my belly because of the loud noises. It was so fun to feel him move around like a crazy baby. After the MRI, the radiologist came and explained that all of his organs (other than his brain/spinal column) looked awesome. She said that he did have swelling in his brain and an Arnold Chiari II malformation which are both expected with spina bifida. She explained that our previous ultrasounds had reported concern that his hands were clenched shut (a sign of chromosomal disorders) and that he had "rocker bottom feet" and that she didn't see either of those. For the first time, a doctor was telling us that she didn't think he had a chromosomal disorder. We avoided telling anyone. We didn't want to give anyone false hope. We didn't want to give ourselves false hope.
Feb 9th- I had to call my maternal-fetal specialist to reschedule an appointment because there was a death in my family and I had to fly home for the funeral. The receptionist told me that they didn't have an opening for two weeks and she would have to call me back. Two hours later, their office called and I was expecting it to be my new appointment. Instead, it was the genetic counselor calling to inform me that the microarray (chromosome portion) of my amniocentesis results came back completely normal. He does not have a chromosomal disorder. This alone made his chance of living jump exponentially. She informed me that this meant we would be transferring up to Atlanta for our care and that there we would meet with surgeons who could correct our baby boy's birth defects. Surgery. That word has never sounded so wonderful.
Feb 10th- Our cardiologist appointment. We had an echocardiogram done on baby boy. Who knew they could do that? Crazy. Although I was a cardiac nurse at my last job, I am pretty bad at reading echocardiograms. Also, the screen was turned so that I would have had to strain to look at it. So I just laid there and prayed. I praised God for giving us such great news the previous day and assured Him that I trusted Him, no matter this baby's condition. The cardiologist came in after the scan and asked me what I had been told. I told him what we had been told, an ASD, VSD, and possibly some issues with where his aortic opening in relation to his VSD. He went on to tell us that he saw no issues other than that he possibly may have a slightly larger than normal opening between his two atriums (a small opening is normal and closes around 6 months after birth). He told me that if not for a previous ultrasound noting an ASD, he wouldn't even think it could be larger than normal. I knew from research that it was possible for these septal defects to close before birth, but never dreamed it was possible for that to happen for us.
In two short days, we had gone from thinking our baby would not live to finding out that he would have spina bifida. period. I do not want to take away from the diagnosis that is spina bifida. We will have at least two surgeries for our little guy-- his spina bifida closure within 48 hrs of birth (most likely within 24 hours) and a surgery to correct the swelling in his brain (possibly a shunt). Also, his club feet may require surgery. And I'm sure he will have lots of physical therapy and occupational therapy sessions in his lifetime. But he will most likely live. We went from parents who were sure that they needed to grieve for their baby to parents who need to worry about surgery. What a wonderful gift from God.
Because of how late we got all our results back (I was 24 weeks, 2 days when we found out that his heart/microarray were clear) and the possibility that the opening between the top chambers of his heart may be larger than normal, we are not candidates to have the spina bifida repair before birth. Science is amazing, but I was very nervous about the risks of preterm birth after the surgery and I just asked God to give me a clear yes or no as to whether or not we should do it. Vanderbilt in Nashville gave us a clear no and that was enough for me.
His spina bifida lesion is also very low. They think between S2 and S4. These sacral nerves handle bowel/bladder control and sexual function. Your legs are controlled by your lumbar nerves, which are above your sacral nerves. It is possible that those nerves may still be damaged. We really won't know until he is here. So he most likely will be able to walk at some point in his life.
I am still in complete shock that this is our reality. My heart is so heavy for all those parents who do get the diagnosis of Trisomy 18. In those weeks that we thought this baby wouldn't make it, it was almost as if our lives stopped. The word was happening around us and yet we couldn't think about anything else but him. I hope that I never have to know the grief of losing a child and this experience has been so eye opening to just the tip of the grief iceberg.
God was still there in those immense moments of grief.
My dear friend Megan sent me this passage that brought me such peace:
"Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness. I say to myself, 'The Lord is my portion; therefore I will wait for him.' The Lord is good to those whose hope is in him, to the one who seeks him; it is good to wait quietly for the salvation of the Lord. It is good for a man to bear the yoke while he is young. Let him sit alone in silence, for the Lord has laid it on him. Let him bury his face in the dust--there may yet be hope. Let him offer his cheek to one who would strike him, and let him be filled with disgrace. For no one is cast off by the Lord forever. Though he brings grief, he will show compassion, so great is his unfailing love. For he does not willingly bring affliction or grief to anyone." Lamentations 3:22-33
