“I’ll never forget the night of the phone call that changed my life. There was a woman who had just given birth to a baby and she wanted my husband Mike and I to raise him.
We had gotten similar calls before, about expectant mothers who wanted us to raise their unborn babies. But it never ended well. There was the one who liked us but chose a different family because her mother threatened to cut her out of her life if she picked us. There was the one who dropped off the face of the earth before we could meet her. There was the one who chose a different family because she insisted, we give the baby the name she had picked out. We had gotten used to heartbreak and were starting to lose hope that our baby was out there.
This call, however, came with a twist: the baby had a heart defect and would need open-heart surgery sometime within the next month.
His defect, truncus arteriosis, is a very rare heart defect in which the pulmonary arteries, which carry deoxygenated blood to the lungs, and the aorta, which helps pump oxygenated blood to the rest of the body, were fused. Therefore, both oxygenated blood and deoxygenated blood were mixing in his heart. Left untreated, it’s fatal. After the surgery, the baby would require a hospital stay of a few weeks.
There was more, too. His mother was addicted to meth, and she had actually left the hospital against medical advice to go use. She didn’t even give the baby a name before she left. This tiny little boy had absolutely no one. I knew right away this baby was destined to be ours. Mike took a little more time to decide, but he came to the same conclusion.
The call came on a Tuesday. On Saturday, we found ourselves in a city two hours away, at the bedside of this tiny baby. He had a breathing tube, wires, and more IVs than you could count. He was so heavily sedated he could barely stay awake for more than a few minutes. But he was beautiful, and, for me, it was love at first sight. We named him Brenden, after a very good friend of Mike’s.
I wish I could say that everything else went perfectly. But it seemed like I was one thing after another. Brenden ended up going into heart failure and needed his surgery five days after we first met him. It took a long time to get him off of oxygen support, and he had feeding issues. But finally, after 5 weeks of driving back and forth, spending more time at the hospital than our own house, it looked like we were finally going to take our little guy home for good.
Mike and I went out to dinner one night a few days before he was set to be discharged. Then we got another call, a call no one wants to get Brenden’s heart rate had dropped and they were doing chest compressions on him. We raced back to the hospital and waited there literally all night for any news. They ended up putting him on ECMO, which is a bedside heart-lung machine. It was doing the work his heart wasn’t able to do. Back came the breathing tube, the sedatives, and suddenly we didn’t know if our sweet little boy, who was destined to be ours, was going to make it. The worst part was the doctors didn’t even know why. For two weeks, they searched for answers.
Finally, we found out that one of Brenden’s coronary arteries, which supply blood to the heart muscle, was in a weird spot and getting compressed in times of stress. Prior to the incident that landed him on ECMO, he had had his NG tube changed. That’s a tube that goes in through the nose, down the back of the throat and into the stomach for feeding. It’s extremely uncomfortable, and getting it changed had upset him so much and his heart couldn’t handle it. This also meant he would have to undergo another surgery.
I wish I could say everything went better after that, but Brenden still had trouble getting off oxygen and being weaned off of his sedatives. Feeding was tougher than ever, with him throwing up after just about every feed. In fact, he needed a third surgery to place a G tube for feeding. Also, we learned that he had suffered some brain damage due to bleeding in the brain, very common in newborns, but exacerbated by all the anticoagulants he had been on during the course of his hospital stay, particularly while on life support. But finally, after 110 days in the hospital, we got to bring our little man home.
I wish I could say that everything was rosy after that, but you should know better than that by now. Brenden had significant developmental delays and needed weekly therapy. I ended up having to quit my job to take him to therapy, to see various specialists, to manage his feeding tube and medications. But Mike and I had settled into a routine of pinching pennies, sharing domestic duties, and bonding with our little guy, when my world was shattered once again. Just after the new year, and for reasons of which I’m still not entirely sure, my loving husband, Brenden’s father, took his own life.
This meant that I was now a single mom. And what’s more, the adoption had still not been finalized, for various reasons, and while the agency believed it was in Brenden’s best interests to stay in the only home he had ever known, they didn’t want to move forward with finalization unless they could be sure that I was emotionally stable, financially stable, and willing and able to meet his needs. That’s still an ongoing process, but I am doing what needs to be done to make sure that is true. I am hopeful that I’ll be able to finalize his adoption by the end of this year.
All of these things were bumps I never envisioned in this road called parenthood. But I’m finding my new normal. Brenden still has therapies and appointments, and still has significant developmental delays. In fact, since leaving the hospital, he has been diagnosed with cerebral palsy, unilateral hearing loss, and farsightedness. He still relies on a feeding tubes and deals with multiple gastrointestinal issues. But seeing him smile, hearing him babble, watching him as he makes progress at his own pace…I wouldn’t trade any of that for the world. I could sit and wish that he was ‘normal,’ or wish that Mike were still here to witness these milestones. And admittedly, I sometimes do. But my life is what it is. And I have a tiny human, my innocent son, who relies on me to be strong and be present. So, I keep marching on.”
This story was submitted to Love What Matters by Jennifer Pajor. Submit your own story here and be sure to subscribe to our free email newsletter for our best stories.
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