As told by his mother, Ashlee.
I guess I should start at the beginning. My husband and I tried so incredibly hard to have a baby for a year or more. We had a miscarriage prior to getting married, which was a real eye opener. When we found out we were pregnant it was the biggest surprise EVER. I had gone to urgent care late at night thinking I had a kidney infection. The nurse asked for a urine sample and when she came back into the room she said, “Sweetheart, you are pregnant.” My husband and I about dropped to the floor. There was blood present in my urine, so she sent me to the ER fearful I was having a miscarriage (again). In the ER they took a ton of blood and did an ultrasound. My blood work sure enough said I was pregnant. My hormone levels were incredibly low. The doctors thought I was having a miscarriage. The ultrasound showed nothing (because I was way to early to see anything). Over the next few days, we had more blood tests done, and my numbers kept increasing! We were so excited so thrilled!
At 14 weeks I was sent to a high risk doctor because I already was showing gestational diabetes, so high risk followed me. They were doing an ultrasound and the tech kept saying, “ I can’t get a good look at his heart.” We thought, “well he’s so small, of course you can’t.” What she meant was she couldn’t see his aorta or pulmonary arteries. We were devastated but very hopeful.
We went back every 4 weeks after this. We were finally referred to Ann Arbor where they had the best doctors and the best surgeons. All we knew was he had two holes in his heart that needed fixing. Beyond that, we had no idea of the severity of his little heart. We saw doctor after doctor and surgeon after surgeon reassuring us he’d be okay. He’d just need some surgery.
Fast forward to 35 weeks. I was HUGE and had high blood pressure, and my blood sugars were off the charts. I was admitted to the hospital. I had to go all the way to Ann Arbor, which for us is a two-hour drive. I was scheduled for a C-section on April 23rd. (Hunter’s due date was April 30th.) I was being admitted March 31st. I knew this was going to be a long month and a very boring lonely month as my husband had to go back to work two hours away. He came on the weekends though, which was good because the night of April 3rd, I had 6 hours of active labor that just stopped randomly.
I thought to myself, “Good. It’s too soon for my peanut to come out.”
That next morning I woke up to doctors all around me saying, “We are taking Hunter this morning.”
I was in shock! None of our family were here. We made phones called and an hour later my baby boy was born. I didn’t see him, touch him or even hardly hear him. I heard a faint cry from the other room. My husband could go and see him and he took pictures and made sure all was okay. For now it was. They kept Hunter in the “nesting area” to keep a close eye on him. I didn’t get to hold my baby until 4:30pm that afternoon and he was born at 9:33am. I was able to hold him for about 6 minutes until we had to leave. Because I had a c-section, I had to wait 24 hours before I could get out of bed. I had to wait until the next morning to go upstairs and see Hunter.
They had him on oxygen and a heart monitor, just in case. They did a ton of echocardiograms on him to see his heart. It wasn’t good enough. The following morning, he was taken to have an MRI. They saw that his right pulmonary artery wasn’t attached where it should be. It was attached to the ductus (PDA) that closes after a baby is born. This was not good at all. They started Hunter on medication to keep that ductus open and keep him alive. The next day he was scheduled to have open heart surgery. We were terrified and devastated. Our baby was 3 days old and having open heart surgery. It was the most terrible feeling.
Surgery went okay. When they took Hunter off the bypass machine, the blood and oxygen rushed to his lungs and damaged his right lung. It was too much too fast for his little lungs. They didn’t’ have a enough room to actually fully close his chest either. So his chest was left open. You could actually see his little heart pumping in there. After a week of being on medication, his left lung collapsed. He was on full life support at this point (ECMO). I thought this was it. This is when my baby dies and goes to be with God.
Sure enough, he pulled through everything. He was taken off the life support and doing great. He had his chest closed and was just progressing so well. I thought to myself, “We’ll take him home someday soon.”
But Hunter kept getting sick. Whether it was blood pressure issues or an infection here or there. He was on the ventilator for too long. The doctors were sure he’d have to go home on a ventilator to stay alive, which meant they needed to put a trach in (which is such a big surgery). We sat down with the doctors and asked them straight forward, “Can Hunter survive this?”
They said “ We can’t say either way. He’s really sick.”
For Hunter to even remotely start to get better he needed his trach done and a permanent dialysis drain (his kidneys were function at about 20% because of the life support his kidneys took a HUGE hit). Hunter was able to make urine but that’s all. It wasn’t enough to keep the fluid off him though. Doug (my husband) and I were faced with a decision no parent should face. Either Hunter has surgery, or we were to keep him comfortable long enough for family to come and say good bye. We talked it over a LOT for two days.
Finally we said “Hes’ too little. This is too much, and we can’t do this to him anymore. He’s just too sick.”
He was 6 weeks old at this point. He had been through more then any grown adult should go through. Chest tubes, feeding tubes, scopes to look into his lungs, open heart surgery, plus so much more. We talked to the doctors and told them our final answer. The second the doctors left, we had this peace over everything, and then Hunter’s blood pressure went crazy low and nurses were all around him, trying to help him. I looked at my husband and said “Babe, this is Hunter saying ‘I agree with you, I’m done fighting.’”
It wasn’t long after that we made tons of phone calls, and our family was right there. We had our pastor come in and dedicate him to Jesus and pray over us all. It was perfect. Everything that happned that night was perfect. We decided not to prolong what we knew was going to happen. We made the choice in the middle of the night to let Hunter go be with God. They took off his medication except sedation and took out the vent tube. Hunter took a few breaths, and he was gone. It was peaceful. I felt a weight lift off me, almost like god was saying, “I’ve got him now, you don’t have to worry anymore.”
It is so true. God had him in his arms and I had nothing to worry about anymore. Hunter was whole, tube free, medication free and with the ultimate man everyone waits to meet.
My heart is broken, literally just broken. I know that he’s safe though and so happy. I also know he’ll be waiting for us. I just can’t even wait for the day! His funeral service was so incredibly perfect. I thought it would be the hardest day of my life. It was actually the most perfect day of celebration. He was surrounded by so much love. So many people came to show support and love. It was just amazing. I know this will be the hardest thing to endure, but I know that we’ll get through this. I know that God will take care of us. I know we will move on and have more babies. My heart will never forget Hunter. Never ever. It’s impossible.