This is a guest post by a The Stay Strong Mom follower.
Trigger Warning: This post may contain sensitive material pertaining to miscarriage, pregnancy loss, and special needs.
By Anna Dove
When we pictured our lives together, we envisioned moving around with the military from state to state or country to country. We were open to the idea of going wherever the wind would take us and, in this life, we imagined healthy children (easy to conceive) to accompany us on this ride. We were married and began having trouble achieving this life goal of having children. After six months of trying, I went to the doctor to talk about our challenge. She suggested going in laparoscopically to see what was going on. (I have a history of fibroid cysts) In September 2010, I had the procedure done where they went in and clear a blockage in my fallopian tubes. Our dream of having a healthy baby came true on December 17, 2010 when I found out we were expecting our first baby! We declined all testing, they offer, because we wanted to be parents so badly and would love and cherish what God would gift to us.
The pregnancy went flawlessly and on August 14, 2011, we welcome a healthy beautiful baby boy with webbed toes on both feet. I was horrified and couldn’t believe our child had an imperfection. What would this mean for his ability to walk? After many trips to the pediatric orthopedic, he confirmed our little boy, Jameson, would walk just like every other child! The bones were not fused, it was just the skin fusion. We thought that was the end of our worries and we could live with this unique feature of our boy, but that was only beginning of our rollercoaster ride in building our family of five.
Jameson was an easy baby and we loved this new role as parents, we decided to try for our second child. Here is where the hardships began to mount. Shortly after Jameson turned one, we found out that were gifted another baby. On the day of my eight-week appointment, I began to miscarry the baby. I called the doctor and they canceled my appointment with guidance on what to expect. We were crushed, but didn’t give up hope. During our visit home, at Thanksgiving, my sister and I both had a feeling we might be pregnant together, so we excitedly ran and purchased home pregnancy tests. Emotions were flowing as we both stared at our tests to turn positive and the DID! How exciting to be going through this with your sister (even though we lived in different states). I called the doctor, when we returned home, and set up my appointment. I remained optimistic, as the day of my appointment approached. After an ultrasound we gained confirmation that we were going to have a baby and we were 7 weeks 4 days along!
Unfortunately, my husband was not able to attend this appointment because he received a quick set of orders and was placed at MCCC in Ft. Benning, GA. I called him to share the wonderful news that Jameson was definitely going to be a big brother and we could celebrate in a couple weeks when I would drive down to see him. (We owned our house in North Carolina, so I couldn’t move down until we rented it.) He stayed in bachelor quarters on base, because that was what made the most financial sense for our young growing family. Little did we know that this minor hardship would foreshadow more to come.
During my visit, began to have some spotting. I went to the Emergency Room, on the Army base, to get an evaluation and check on the baby. An ultrasound was done and they told me that everything was fine and I had misjudged my date of conception. This could be plantation bleeding. I was released and we went home. I knew in my heart that this news was not hopeful and I was miscarrying this baby. In the days to come, the bleeding became worse. As we were driving home for Christmas to Maryland, that is when I went into a full miscarriage of this baby we had hoped would be Jameson’s sibling.
Christmas was a good distraction to this difficult event. We enjoyed time with family and loved watching Jameson’s excitement at this festive time of year! After the New Year, I returned to North Carolina and Jake went back to Fort Benning, GA for schooling. My next visit would be for the Super Bowl. In the meantime, I went to see the doctor to get a check up and be cleared to hopefully be able to try for another baby. Unfortunately, that wasn’t the news they provided me. An ultrasound revealed I had a septum in my uterus and they wanted to reconstruct my uterus to prevent future miscarriages from happening. I was referred to a reproductive endocrinologist to address this matter. I left the office feeling rather deflated, but not completely hopeless. I called to make an appointment and the earliest they could get a new patient in was April. We would be moving, after my husband graduated his course, at the end of May to California. Timing was not on our side, but when in the military does time cooperate?
Super Bowl weekend was here and Jameson and I traveled to see Daddy! We needed this visit after an emotionally rocky start to the new year. We stayed for 10 days and then went back up to NC and see our friends. We finally rented out house in March and the new tenants wanted to move in on April 1. This was great news and we could finally live as a family again! However, how could I make my April appointment with the reproductive endocrinologist in North Carolina if we lived in Georgia? Easy answer- cancel it because I was pregnant. Amazing how God has plans for us!
We had the house packed up and shipped to California and Jameson and I headed down to Georgia to live for two months. I had the pregnancy confirmed with my OBGYN in North Carolina and they helped transfer my care to a high-risk doctor in Georgia. The stars were all aligning! At my 20-week appointment we all saw the baby for the first time together! Most of the news was positive, but I had partial placenta previa, the baby was breech (not a big deal!), and the baby had cysts on the brain. The doctor informed us that the cysts would most likely dissolve by 32 weeks. We left the appointment feeling optimistic and ready for our move to California! God had a plan and we promised to care for all the gifts he gave us, no matter what!
We took a week to drive cross-country enjoying the views of this beautiful country and finally arrived in Twentynine Palms, California on June 8, 2013. Wow! Where are we??? We unpacked our house, established doctors, and began settling in our home for the next three years! My first OB appointment came when I was around 25 weeks along. I had a difficult time getting the Naval Hospital to send me to a high-risk doctor, because they believed they could care for my case. That hurtle was quickly resolved with the results of my ultrasound, they performed. The baby’s frontal lobe (we didn’t find out the gender) was measuring smaller than average. We were sent down to Palm Springs to see the high-risk doctor for further evaluation. From Twentynine Palms, Palm Springs is referenced as going down the hill- and that is exactly what happened. Things seemed to be, once again going down hill with this pregnancy. We remained optimistic we would have a happy and health baby to add to our family in October.
The doctor said the baby’s head measurements were in the lower end of normal and could not give a reason for this underdevelopment. He said craniosynostosis could be a potential reason for the measurements, but he wasn’t 100% because the back fontanel was open. October finally arrived and we anxiously awaited for our baby’s arrival. I received bi-weekly non-stress tests and monthly ultrasounds. On the last ultrasound, the baby had not exhibited any growth- causing the doctor to now diagnose the baby with intrauterine growth restriction (IUGR) and set an induction date for 39 weeks.
On the evening of October 13, 2013, we drove down to Palm Springs to have our baby we so anxiously wanted to meet. Reid Gardner Dove was born at 13:21 on October 14, 2013 weighing 5 pounds 8 ounces and 20 inches in length. The nurses immediately took our new baby boy over for observation and screamed over mom and dad, we need to see your hands. We then heard one of the nurses exclaim, “They don’t have it.” Have what? She said a transverse palmar crease. What does that mean? Oh, it’s a soft marker, she said with not further explanation. We waited patiently to have our baby put in our arms. My husband was with him every step of the exam.
We finally were able to hold our little mystery man. Craniosynostosis was not the reason for his head measuring on the small side. There was not an alarming feature on him, other than his palmar creases, that gave us any indication something was wrong with our new little love. In postpartum, I asked the nurse what the palmar crease meant and why it is considered a soft marker? She was extremely empathetic and sat down with me to explain that is could be a soft marker for down syndrome. She then patted me on the back and said, “he is perfect and doesn’t have down syndrome.” A wave of relief rushed over us, but that didn’t last long.
Fast forward to Reid’s four-month appointment. There was always a little voice inside our heads that reminded us of the alarms that we were told about during Reid’s pregnancy. He was a very sleepy infant and was not growing as quickly as most babies do. He also stayed fairly bound when we would change his diapers and despised tummy time. I addressed our concerns with Reid’s pediatrician and he agreed to do a blood draw for a chromosome analysis. This test would give us a true explanation of who are Reid is. The test would take two weeks to produce results.
Sunday, March 2, 2014 arrived and my husband left on deployment to Afghanistan. Monday, March 3, 2014 the doctor called with the results of Reid’s chromosome analysis. Reid’s number 9 chromosome on the p arm had: a deletion of material at the top, double material on the next section down, and triple material on the following section. I asked the doctor, what does this mean? His response, “I wish I could tell you, but I have never heard of this before.” This was the first time we heard that, but definitely not the last. He put a referral in place for a geneticist and hoped they would be a better source of information. I hung up the phone and immediately tried to call my husband. Luckily, he was just about to board his plane from New Hampshire to Germany. I informed him of the news and we both cried and cried and CRIED. What did this mean for our sweet boy, our family, and the future. I cried for a day and remember sitting on the floor thinking- crying is NOT going to help him. Get up and face this new challenge!
My mother-in-law flew out for the appointment and my sister lived in San Diego at the time, so she also came for support. We recorded the appointment, so I could process the information and explain it to my husband, who was now gone for the next 7 months while we set out on our new path with a “special needs child”. In summary, the geneticist, in her 20 years of practicing genetics, had NEVER seen this formation before. WHAT?!?!? She gave us guidance on programs to enroll him in and a path of care. We contacted the San Bernardino Inland Regional Center and immediately enrolled Reid to receive home services. We were also referred to the following specialists: audiology, ENT, cardiology, ophthalmology, gastroenterology, urology, and developmental/behavioral pediatrician.
At 6 months of age, Reid began his regiment of therapy. He had a home teacher once a week for fine and gross motor skills and then later helped with developing language. He started and still today receives physical therapy. At 15 months of age, Reid began receiving occupational and speech therapy. Reid is almost five and weekly he receives, privately, three total hours of therapy. Three days a week, for an hour a day, we sit in a waiting room while Reid receives extra help to achieve steps to a “normal” life. Reid also goes to preschool, where he receives additional help with speech and occupational therapy. Our sweet boy, who NO ONE could tell us about, has come a LONG way, but remains nonverbal. He has some words, which gives a glimmer of hope, but what stands out the most is his desire to want to learn and achieve and conquer his goals! There is an extremely smart boy who is trapped inside and trying to get out. His desire to learn his goals is contagious! Do we have frustrating moments/days- ABSOLUTELY! But he has taught our family and all who interact with him and abundance of knowledge and love. Reid has put me through an array of doctor appointments, that I have decided to use my knowledge for a new profession. I was a middle school language arts teacher, but now I am in school working towards achieving an RN degree. Life is too short to sit down and cry! We remain positive that Reid will accomplish great things in life and that he is truly a gift from God.
Reid has two brothers who are amazing with him and help aid in his development. The baby was a recommendation from the geneticist, who informed us it would be a good idea but she wouldn’t be financially funding that choice. We are so grateful we took her advice, because Cole is 2 and extremely active. Reid refuses to be outdone by his baby brother! I look to Reid when I feel defeated- if he can overcome obstacles, SO CAN WE!