Our Story started out in 2004 just like any typical love story… love, a home, and marriage in 2006. Then our son Marcus was born in 2007. If that sounds too typical, we did try to liven things up, had our own business lost it due to automotive industry decline, lost our house during the housing crisis, then we have Gordon’s back problems, our bouts with unemployment, moving into my parents’ house, all while trying to keep up with Marcus. The years started flying by and Marcus was soon turning 4. We never intended for him to be an only child, but we seemed to keep waiting for the “right time” to have another baby. So we decided to try, without being so conscious about it because that would stress me out and baby making wouldn't be fun anymore! The next thing we know, mission accomplished! We were expecting a baby in July 2012! That’s when our story took a dramatic turn and became the beautifully complex journey that we continue to live today!
Before Maia, there was Marissa…
We had our anatomy scan in February 2012 and received a lil more info than we expected. We were excited to learn we were expecting a baby girl, which would complete our family equation: Mommy + Daddy = (Marcus) + (Marissa) = tubes tied! We were done! However, we also learned that our baby’s arms and legs were looking short, which was a sign of SD (skeletal dysplasia.) This was confirmed by specialists but they were unable to determine which type she had, since there were close to 300 different types… and so began my relationship with ultrasounds! I had one about every 3 weeks to monitor any changes or “markers” that would help identify the kind of SD she may have. At 30 weeks we did an amniocentesis hoping to get more info, but with no guarantee we’d get answers. We continued to pray and hope for the best and to prepare for our baby girl... and as if things weren't complicated enough, Gordon breaks both his right leg and ankle the day of our baby shower! The swimming pool was empty at the time and he and Marcus were playing and running around in it. Next thing we know, Gordon is rushed to the ER and Marcus greets our guests with "Hi, come in. Daddy is at the hospital and Mommy is inside!" That's when I started my temp job as a very pregnant, part-time nurse to the hubby! Then 3 days later, after testing for 4 different kinds of SDs that had markers of short arms/legs, and now ribs, we got our results after 4 weeks of waiting… it was positive for TD (Thanatophoric Dysplasia), a lethal type of SD. Needless to say, we were devastated. We had hoped for the best and tried not to expect the worst. I remember sitting on the couch in the Dr.’s office, as he mouthed the words "lethal condition" and “incompatible with life.” I started crying and got tunnel vision as I stared at his moving mouth, but the rest of his words were muddled like he was underwater. I couldn't really hear or focus on anything else after that. I looked over at Marcus who was a few feet away playing with toys and thought about how we were going to tell him, and I cried even more. I don’t think I stopped crying until about 4 days later, and I couldn’t sleep either. I ended up making a midnight purchase on Amazon for a book titled We Were Gonna Have a Baby, But We Got an Angel Instead. I would tell Marcus about his lil sister when the book arrived. As it turned out, Gordon was better at telling people the sad news. He sounded like a recording, telling one person after another. He started feeling bad because he became very robotic, talking without emotion, yet he made everyone cry, so he thought of himself as the bearer of bad news. It was such a difficult thing to talk about, so we only told family and friends. Everyone else that asked, we just acted like everything was fine. I had such a hard time talking about it that I had to write my mom a letter to explain everything! Then the time came to make plans. We had about 3 weeks to prepare a birth plan and a cremation plan, how ironic! By then I had accepted that we wouldn’t be bringing home our baby girl, Marissa Grace. I realized that it just wasn’t meant to be and God had other plans. Both Gordon and I are strong, positive individuals, so we refused to focus on the negative. From then on I went into survival mode and did whatever needed to be done. On the night of June 12, I was induced at 37 weeks and gave birth on June 13, 2012 at 11:52am. Right before she was born, I almost didn’t want to push her out, knowing it would be the beginning of the end. As long as she was in me, she was fine… but there was no turning back, it was time. We had contacted Now I Lay Me Down To Sleep, a non-profit organization of volunteer professional photographers, and Maggie, our photographer, arrived early, eager and ready to capture every moment with our baby girl. When Marissa was born, she was surrounded by immediate family and was baptized by her grandfather, a pastor. Everyone got a chance to hold her, including big brother Marcus, who sang to her Twinkle Twinkle Little Star and Rock a Bye Baby. We were blessed to have 43 precious minutes with her. In the end, we left the hospital with a memory box and no baby.
Here comes Maia…
|Maia @ 24wks|
In her own way, Marissa was our lil drama queen without even knowing it! Not to be outdone, it looks as though Maia is already following in her sister’s footsteps! She decided to add some drama to her own story when we had her anatomy scan at 20 weeks. We were offered a Level II Ultrasound that would be done by the doctor, so any questions we had could be answered at that time, instead of waiting a few days for the scans to be reviewed. We really didn’t expect them to find anything, and we just waited to hear “boy” or “girl.” I saw and heard girl, while for some reason Gordon thought we were having a boy! But once again, we got some additional news… our baby girl looks like she might have a heart condition, a CHD (Congenital Heart Defect) called HLHS (Hypoplastic Left Heart Syndrome). Her left ventricle looks small, so we were referred to a pediatric cardiologist, who confirmed this diagnosis. The doctors were concerned about our emotional state after all we’ve been through in the past year and when asked how I felt about this new information, I honestly told them that I’m ok… I didn’t hear the words “lethal” or “fatal” and that alone was a good feeling! We have been referred to specialists at UCSF who have diagnosed our baby with DORV (Double Outlet Right Ventricle), instead of the HLHS. It sounds less severe, but will still require at least one open heart surgery. Although we’re saddened by this diagnosis, we were pleasantly surprised to learn we have other options when it comes to the types of surgery she may have. HLHS would require at least 3 surgeries, and this 3-stage surgery would be the worst case scenario for her, even if she doesn’t have HLHS.
We know this heart condition is not the end of the world. We have already experienced something much more tragic a year ago, so we know we will be ok… we have our faith in God, we have the love and support of family and friends, so we are definitely up for the challenge! In many ways I feel as though we have Marissa to thank for making us so much stronger. Our experience last year has prepared us for the upcoming journey we’re about to take once Baby Maia arrives.