Our journey as a family began on September 3, 2012 when we found out we were going to have a baby! We were elated for the next 10 months and the new adventure that God had planned for us. My first trimester was a breeze. Of course there was some tiredness but I dodged morning sickness and it was a piece of cake!
On December 3, 2012 we woke up as excited as two kids heading to Disneyland to go to our gender scan and find out if our family was growing with the addition of a sweet son or daughter! Unfortunately, our little one had other plans and decided to curl up like a little shrimp and hide all of the little parts. We left disappointed but had an appointment scheduled for the following week.
On December 11th we returned to the ultrasound technician determined to leave dreaming of Blue or Pink. What we received was the start of a very long journey. At the appointment, we were told that we would be having a BOY! We were ecstatic! But that emotion was quickly taken away when she informed us that I had a condition called Single Umbilical Artery (SUA) or Two Vessel Cord. My umbilical cord has one artery and one vein instead of the typical two arteries and one vein. This is often a soft marker for Down Syndrome, Trisomy 18, or Trisomy 13. In some cases it can lead to preterm labor, low birth weight, heart issues or kidney issues. We left the Dr.’s office feeling like we had been hit by a bus. In one hand, we were so excited to have a son, and in the other hand we were scared to death!
It was recommended that we take the state AFP blood test to rule out the probability of having any chromosomal abnormalities. The blood test was taken on December 12th and a few days later we received a call that the AFP test had come back with a strong positive 1:24 for Down Syndrome. It was the last thing we expected and our hearts sank. On December 14th I went back to our Dr. and had blood drawn for the MaterniT21 blood test. The results of this test mimic an amniocentesis but the test takes blood from my arm and is noninvasive to our son. We were hopeful that we would have our results back in 4 days max. Jeff and I paced by the phone and had many sleepless nights. We discussed our possible future with a child with down syndrome and we both felt that he is our son and he will be PERFECT because he is ours. Our hearts were as prepared as they could be. 4 days turned into 5, then into 8 days and still no phone call. After several calls to the lab we were told that we would have the results on Christmas Eve. However, once again the results did not come. On Christmas Day we received a voicemail from the genetic counselor at the lab. She said that she could not give the results to us over the phone but she wanted us to take a deep breath and relax because she felt that we would be very happy with the results when we received them from our Dr. the following day. We listened to that voicemail again with our family in the kitchen before Christmas dinner and cried tears of joy!
The next day we visited our Dr and she confirmed that our son was in fact negative for all chromosomal abnormalities! We had an ultrasound to check on our boy and once again the Dr. had some concerns. This time she was unclear with what her issue was only that she wanted us to visit a Specialist as soon as possible. Once again our hearts sank.
We visited Dr. Steiger, the hi-risk specialist, on January 2nd. After 3 ½ hours we were told that he also had some concerns with our son’s heart. He said he thought he saw a hole in the heart and possible other issues but was unclear as to what the exact issues were. He referred us to a Perinatologist and a Pediatric Cardiologist. We needed to wait for the referral and once again we were sent home with many questions.
On January 8th we met with Dr. Montgomery and Dr. Daftari at Kaiser Riverside Medical Center and learned that we indeed have a long journey ahead of us but the outlook is positive. The doctors believe that our baby has a rare congenital heart defect called truncus ateriosus (http://www.chla.congenital.org/?id=truncusarteriosus1) which essentially means that the aorta and pulmonary artery are fused together and the blood flowing to his body isn’t getting the appropriate level of oxygen. He also has a hole in his heart (not sure of size yet) known as a VSD which is common with this condition. The good news is that our boy is growing perfectly fine in the womb and the goal is to keep him healthy and for Alissa to deliver him as close to full term as possible. As long as he is in the womb he is on the best bypass system there is!
The Kaiser team is setting up a plan to deliver him in LA at 39 weeks and he will spend his first few days in the NICU at Children’s Hospital Los Angeles (CHLA). He will require open heart surgery where the congenital heart surgeons will “re-plumb” as needed and patch him back together. He’ll spend several weeks in recovery and hopefully live a “normal” life with a few more “maintenance” type surgeries in between.
We have so many unanswered questions and every visit we come up with hundreds more. One thing we know for sure is that we are blessed to have access to the medical teams that we do and we know slowly over time all of our questions will be answered.
We are not sure how this all will play out but we’re going to do our best to take it one day at a time. Our next appointment in Riverside isn’t until mid/late February and we have a lot of time to figure out the game plan before our sweet boy is delivered in mid/late May.
We have received a large out pour of support and love and we are overwhelmed by all of your warm thoughts and sweet wishes. As you can imagine we are still trying to process this news and get our heads around the last 6 weeks and what’s to come in the months ahead. We knew that when we decided to have a child it would take a village to help us raise him. We never knew how large our village was. Thank you so much for being a part of God’s plan for our beautiful boy, Owen Thomas Vatter, and our entire family. We know that our son will be OK, it is just a new version of OK that is deeper than our understanding. A dear friend recently told me “Sometimes life can rock our world but hold on friend for the ride cause I can promise you…you will not feel blessed for what your sweet baby has to face but you will know life like you never knew before.” Owen has already shown us a world that is deeper in love and trust than we could ever imagine. Thank you for riding the ride with us.
“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” Jeremiah 29:11
“Faith is being sure of what we hope for” Hebrews 11:1