Before I tell the story of our baby boy’s arrival, I need to give some backstory.
At our 20-week ultrasound, you know the big anatomy scan, the doctor’s found what they called a heart anomaly. We were referred to a cardiologist that specializes in fetal heart matters. Honestly, I do not remember exactly what it was called and not strong enough to look it up but in the end this was not what caused his death but is a part of his story.
More back story:
I was an insulin dependent type 1 diabetic for 23 years, in June of 2014, I received a clinical trial islet cell transplant. The transplant was a success, and by July of 2014 I was completely off of insulin. I traded insulin for immunosuppressant drugs – Imuran and Prograff. At 10 weeks pregnant, I was put back on insulin as a precaution to protect my growing baby and the islet cells. Due to my health history, I was considered a high risk pregnancy which meant more doctor visits and blood draws than normal. On January 10th, at 32 weeks and 1 day pregnant, I ended up in the hospital after some blood work came back “wonky”, the doctors suspected preeclampsia. After many blood draws and back and forth discussion between my transplant doctor and OBGYN team they decided that I had Prograff toxicity; the fix was as simple as lowering my dose.
Welcome to the world!
Some may have been scared at this point but I wasn’t. I was 100% ready to become a mom. I wasn’t scared about labor; I knew I was getting the epidural as soon as I was allowed to. Every part of me was excited! As the three of us waited in the labor suite, we talked about the arrival of our son and grandson. We all laughed at the fact that my actual due date was March 5th (3 days before my birthday), but due to being high risk I was scheduled to be induced on February 12th (1 day before my husband’s birthday) and here we were being induced to have a January baby!! We loved the idea of a January birthday.
I didn’t have a baby shower yet, that was scheduled for February 8th, so we all thought it would be funny to keep his birth a secret from family and friends - surprise everyone at the shower. We joked around about the idea, the nurse who was in the room while I talked about it laughed. I was so happy. I was given the first pill to begin inducing at 3:00 PM. I was also hooked up to magnesium due to the preeclampsia diagnosis; magnesium has a high fall and seizure risk so the nurse had to put in a catheter. Once that was in, I kept saying that I needed to go to the bathroom, everyone said just go… The catheter was the worst part of my birthing experience.
At some point, I sent my husband home so he could get some rest, my mom told him that she would call when it was getting close to ‘go time’.
Throughout the night, I kept telling my mom I didn’t think I could do this, I was extremely thirsty and so very tired. Around 3 in the morning, I rolled over to my right side, I heard what sounded like a rubber band snapping and felt a gush of water. I yelled over to my mom, I think my water broke or I pulled out the catheter. I told her to come over and check, she did and then went out to tell the nurse. I heard the nurse say “Oh wow that’s awesome”. Before I knew it a whole team was there to get me set up with the epidural. Once I got that I fell asleep for a little bit.
While I was asleep my mom called my husband to get down to the hospital. When I woke up or maybe a nurse woke me up I was I was completely dilated and it was time to start pushing.
During this part, I begged and begged for juice; I kept saying I had no energy to push, the doctor told one of the nurses she didn’t think it would cause any harm and to go get me some juice; she probably just wanted to shut me up. 2 hours after pushing at 8:32am on January 28, 2020, our perfect son entered the world. The doctor couldn’t believe how big he was for a preemie, we would later find out that he was 5lbs, 15oz. The nurses cleaned him up and wrapped him in a blanket. When they brought him over and placed him in my arms I was awe struck. I had no idea how much love I was going to have for that little boy. The feeling was out of this world; I was ecstatic to be holding him. I wanted nothing more than to hold him forever. When the nurses came to take him to NICU they asked what his name was, at the same time Albert and I answered – Theodore.
Our son’s full name is Theodore Edward Kon “Tek”. I had planned to call him Tek his whole life. That would be my nickname for him. As I mentioned, my son had what the doctor’s called a heart anomaly. I delivered at one hospital and when I was cleared to be discharged my son was transferred to Ann and Robert H Luries Hospital where he would have a team of doctors monitoring his heart condition. My son was closely monitored by these specialists for 3 days. On February 2nd (Superbowl Sunday), at 10:45 pm one of his heart doctors came to talk to me- I called my husband on speaker so he would hear what the doctor had to say.
With a huge smile on his face, a smile I will always remember, the doctor told us that Theodore was being cleared of the heart ‘stuff’. He told me it was time to be put on an official going home plan. I can still feel that excitement. I can still feel the relief of knowing that we would be taking our boy home in 2 short weeks (what the plan was). That night I was allowed to start mothering my son. If you have been in a NICU situation you know what I am talking about. While there you feel small. You feel like you lack the space to fully mother your child. I immediately started to feel the confinement of the situation lift. I was ready to jump on mommy duty immediately. The nurse on duty that night told me we had to get Tek on an eating schedule. This meant waking him up every three hours. So I did just that and it felt amazing. I loved that quiet time I was getting with him. Where all I could hear was his little breaths as he gulped down his milk.
The next day, everything would change. When I woke him up for his 6:00 am feeding he was so lethargic and disinterested in eating. I called the nurse and she came in to examine him. She said she thought it was because we had him up all night, she told me to get myself ready for the day and we would try again at 8.
At 8:00 am, my son was still not up for eating. The nurse called the doctor and was instructed to put him on a feeding tube. They didn’t want him on an IV drip diet anymore but on milk. The nurse was having a really hard time getting the tube in and called the doctor again. The doctor came down to examine him.
At just 6 days old, our son was diagnosed with a condition called NEC. NEC is a very serious illness that claims 50% of infant lives. So much happened in the 4 days that our son had this illness. Things that I am not ready to put down in writing.
On February 8th at 3:30 am, my perfect baby boy, Theodore “Tek” passed away in my arms. No matter how much I prayed, no matter how much I told him I loved him, our little boy couldn’t survive this devastating illness.
The further I get from this day the more I think - Even with the same outcome, I would do it all over again. To be able to hold him one more time, to be able to tell him I love him again, to be able to sing him his song and to feel that happy; I would do it all over. I would do it again and again and again.
To learn more about my precious angel please visit: