“This wasn’t the plan we had in mind. This wasn’t what our life was supposed to look like. That said, I could not be more grateful, as a far better plan was in the works for us. From spontaneous triplets to a significant heart defect to Down Syndrome, we have pushed our limits, tested our marriage and become better people. Many of our friends and loved ones have grown to know our family as one where anything can happen, the odds never seem to matter and the typical route is seldom followed. At times our life seems like a TV show playing out in real-time.
The first ‘episode’ of our show aired In November 2016 when we received our first diagnosis. We were about 11 weeks into our second pregnancy (the first ended in miscarriage) when we were told our baby boy would be born with Down Syndrome. I wish I could say I took it well and that I was fine from the start. The truth was – I was devastated. I was mourning the life of the child I had envisioned, and we knew little to nothing about Down syndrome. It took about a month, but we were able to educate ourselves about Down syndrome and regain the excitement of welcoming our first baby.
Right about the time we were wrapping our heads around DS, we received another gut punch. At 20 weeks pregnant (and two days before Christmas) we were told our sweet boy had a significant heart defect, and it was not fixable. There are no words to describe the pain, depression and absolute heartbreak that came from that conversation. I remember asking the high risk OB if there was anything that could be done. There had to be options. Each scenario I would throw out, he would quickly shoot down. The conversation eventually ended with him telling us to ‘prepare to terminate the pregnancy.’ I remember thinking, ‘This cannot be happening. There has to be another option.’ We needed a second opinion. They agreed to call various cardiologists to see who would be willing to consult on our case over the holidays and found one that could meet us two days after Christmas.
We went 4 days replaying the conversation over and over, researching the heart defect and mourning the son we thought we would never meet. How could this be? I could feel him moving and my husband felt him kick for the first time on Christmas. How could this little boy with such strong kicks and feeling so full of life be incompatible with life? Waiting those four days seemed like an eternity. The depth of depression, mourning and utter hopelessness was unlike anything I had ever experienced. The day finally came to meet with the cardiologist where we learned that the heart defect was significant, but she felt it was fixable with open heart surgery. That golden word was ‘fixable.’ We frolicked out of that appointment feeling like we had hit the lottery. We were ecstatic and full of hope.
The following months were filled with doctor appointments, specialists, research of the top surgeons and roundtable discussions to devise a delivery plan. Our baby boy was here before we knew it. On May 2, 2017, our sweet boy made his entrance. It was as simple and uncomplicated as it could get for a child with Down syndrome and a heart defect. Immediately following delivery he was whisked away to start his relatively short 10-day NICU stay at the neighboring children’s hospital. In hindsight, this was just the warm-up for things to come.
At four weeks old, we became concerned our son was struggling. A few phone calls, a trip to the cardiologist and a trip to the local ER later, we learned he was in complete heart failure and we had caught it just in time. As new parents, we watched as the trauma team filled the room and quickly did all they could to stabilize him. I was in shock, clutching my baby on the gurney as they worked to draw labs, place IV lines and administer oxygen. Finally the flurry had passed and we were waiting for an ambulance transport back to the same hospital we had left two weeks earlier. I lost it there in the trauma room. The gravity of the situation was starting to sink in, and the potential rocky road ahead for us started to become clearer. By the time we left the hospital about two weeks later, we were already planning the open heart surgery date that was originally scheduled for 4-6 months of age. He couldn’t wait any longer, and we had to bump it up to when he was 7 weeks old.
On June 22, 2017, we handed our son over to the surgeon to fix his heart. Everyone we had spoken to anticipated this to be a successful, run-of-the-mill surgery. A one-and-done fix. It turned out to be anything but the norm. We spent nearly all of July through October camped out at the children’s hospital with our fighter. We enjoyed a brief 3 week stay at home in August. We thought we had put the worst of it behind us, but really, we were entering into the fight of his life. Once again, we noticed he seemed off and suddenly stopped eating at home. He had skipped two bottles and was unusually fussy. Not significant signs, but our gut said something was up. We took him back to the local children’s hospital ER where we found out we had miraculously caught that his mechanical mitral valve was clotting off and he was once again in full heart failure. Had this not been caught, he would have spontaneously arrested and there would be nothing we could do to save him. Catching it was nothing short of a miracle. He was life-flighted back to the children’s hospital that had done his previous heart surgeries to try and save him. Little did we know as we loaded him onto the helicopter to make the 10-minute trip, they weren’t sure if he would survive the flight. He did, and our newest fight was just starting.
October 4, 2017, currently sits as the hardest day of our life. Harder than hearing we needed to terminate our pregnancy, harder than the months of hospital stays in the ICU. Our son had encountered a complication that was previously thought to be impossible. He had a blood clot on his new mitral valve. We were in uncharted territory, with numerous children’s hospitals across the nation consulting. The treatment was risky, but we went for it. In the late evening/early morning, my husband noticed our son’s eyes were fixed in one position and he was not responding to visual stimuli. Our worst nightmare was coming true. Our son had suffered a massive stroke. I remember the doctors coming in to tell us like it just happened… there was little they could say that we didn’t already know deep down. It was the first and only time I have seen my dear husband cry. Neurology came down to see him and all they could tell us was, ‘He appears far better in person compared to the amount of damage seen on the scans.’
Once morning finally came, I remember shift change brought in one of my favorite doctors. She sat with me on our bed while I begged her not to give up on him. Full ugly cry, just one desperate mom trying to keep hope that they had one more Hail Mary pass to throw. He wasn’t stable enough to withstand another heart surgery to replace the valve, as he couldn’t handle the heavy blood thinners during bypass, he couldn’t take the clot busting treatment to open up his valve and he wasn’t a candidate for transplant due to the strokes and the unknown of whether his brain would recover. We had hit checkmate with no other option than to hope, pray and wait.
Over the coming days, we discussed if it was time to call in family to say goodbye and how to update loved ones, while trying to keep hope for a miracle. All we could do was ask for prayers, breathe and try not to think about the reality that we were most likely going to lose our son. Once again, our amazing son showed just how strong he is. While he had lost all function of his left side and his oral feeding skills were completely gone, our son was still alive. It took weeks for his left leg to regain function, months for his feeding skills to come back (we used an NG tube in the meantime) and we are still working on the left arm. He works hard in daily therapies to make progress and we could not be more proud of him. Each milestone he reaches and each obstacle he overcomes is a testament to his will to not only survive, but thrive. In total, he has endured 3 open heart surgeries, 1 cath lab procedure, 1 pacemaker placement surgery, a few chest closures and cleanout surgeries, numerous strokes and has been intubated more times than we can count.
The next year we enjoyed a few quick hospital stays, our fair amount of ups and downs as well as more joyous moments than I can count. We learned how to embrace our new normal and rebuild our lives in a way that was more than anything we could ever dream. We tested our new medical/nursing knowledge and watched as our son flourished. With all of this amazing momentum, we thought it would be a perfect time to consider giving him a brother or sister. In September of 2018 we met with his team of specialists to make sure they thought his heart would be stable for the next year. We knew he had a heart procedure coming in fall of 2019, so we had a narrow window to try and get pregnant and have a child before the next round of heart battles for our son.
By October we had a positive pregnancy test, and the next phase of our lives was starting. We were excited and nervous at the same time. By week 7 I knew something was different. I remember turning to my husband and telling him, ‘Either pregnancy as you get older is exponentially harder, or we are having twins.’ I’m pretty sure that sealed our fate. The next day we strolled into the OB’s office with conversations of how nice it would be to have just a typical, boring pregnancy. I explained to the OB that I was so sick and always exhausted. This pregnancy was kicking my butt. Within seconds of the start of the ultrasound, we could see exactly why. Twins!! I just remember asking the tech why I saw two, saying, ‘Tell me there is only one.’ I was in tears instantly. How can we handle twins plus making sure we meet our son’s medical needs? How can I continue to work full time? Do we need a bigger car? House? How is this going to work? The excitement quickly followed and the moment of how are we going to do this turned into an accepted challenge.
Two weeks later we went in for a follow-up ultrasound and received yet another surprise… it wasn’t twins, but triplets!!! Excuse me? Yet again I watched as the OB scanned in silence. ‘Umm, Doctor? Why do I see two in one placenta, in addition to the one in its own placenta? Is there a third?!?’ He quickly told us he was trying to triple check before he said anything, but, ‘Yes, there is a third.’ We went silent until I could finally ask him how sure he was. ‘Beyond 100% certain,’ he said. Next he asked if I had been taking any fertility meds, to which I quickly answered no and that he would have needed to prescribe them (which is apparently untrue as some are going to Mexico to seek treatment). No! We tried for one child and spontaneously got three!! Who does that?!? It literally felt like, Us: ‘Let’s have another kid.’ Universe: ‘Hold my beer.’
The shock of this news took quite a while to wear off as we went to grab a bite to eat and talk.
Those previous questions were quickly answered. Did we need a new car? Yes, we didn’t even own one that could get them all home. Did we need a bigger home? Most likely. Will I be able to go back to work? Yes, and I will come back stronger and better for it. How is this going to work? We have no clue, but are incredibly confident it will all work out. It has to. It wasn’t until the drive home that night that the triplet news finally hit me. I drove home in tears. I mean, triplets. What the heck?!? We loved them already, but the news was just as shocking and exciting in a completely different way as hearing about Down Syndrome or a heart defect. Our last two years had prepared us to face this new challenge head on. The night of 10/4/2017 has an incredible way of putting life’s stresses into perspective. As we face these hurdles in life, we know we can make it through. So long as it’s not a life or death situation, all will be just fine.
We are currently 27 weeks pregnant with two identical girls and one fraternal boy who are set to make their arrival sometime in April or May. While this pregnancy has been no walk in the park, I feel like we are grizzled veterans at this point. We survived the conversation with the high risk OB at 11 weeks (different doctor than our last high risk OB) who encouraged us to selectively reduce the two identical babies for the health of the pregnancy and myself (aka abortion for the two girls). We have only received one scare early on and that was quickly resolved within a week. The triplets are expected to be delivered via C-section around 28-32 weeks and go directly to the same NICU that our son went to. In a weird way, it is comforting to know the NICU world and to go back there. This is our safe place and familiar to us.
While I have no idea what the future holds, I can pretty much guarantee that our story is not over yet. We have grown accustomed to the various curveballs that life can throw and have learned to handle them as they come. We try to treat every new challenge as an opportunity to grow and become stronger as a family. We have now bought a large SUV, are in escrow to close on a new home next week (why not move when you’re super prego?!?) and have received new diagnoses for our son that will add more craziness to our household. For now, all we can hope is that this pregnancy goes as long as possible, for the babies to be born at a safe gestation period and that the delivery is as smooth as our last. Not too much to ask, right?”
This story was submitted to Love What Matters by Katie Diff of Southern California. You can follow their journey on Instagram. Do you have a similar experience? We’d like to hear your important journey. Submit your own story here, and subscribe to our best stories in our free newsletter here.
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