The Boy Who Lived

(If you’ve NOT read Harry Potter then a brief explanation – Harry was the target of the evil bad guy but somehow managed to withstand the death curse thrown at him despite many others being killed by said bad guy. He became know as “The Boy Who Lived.”)

And this is repeat info for some of you but for those of you not familiar with Ben’s story – some background before the punchline. Apologies in advance – I censored a bit, but Ben’s story is not for the faint hearted.  I talk about life and death and babies and lots of blood, so please read with caution.

I spent three months of my pregnancy being told I was going to lose Bennett. (In very kind and gentle terms, for the most part.) At 10 weeks we discovered I was miscarrying (again, we had just had our second miscarriage in July then got pregnant with Ben in August.) I was put on bedrest and I was already on progesterone supplements and we were sent to see the OB back up for my midwife then he sent us to the two perinatologists/high risk specialists. We also had a few other ER trips in there for complications (like, oh, my water breaking at 22 weeks) during which time poor freaked out ER doctors and OBs on call at the nearest hospital had to see our ultrasound and tell us we were losing our baby. (We reassured them we had been hearing that for months.) The perinatologist when he first saw my ultrasound called in his partner so they could be check it out – which is NOT comforting for a pregnant mom, let me tell you. They said it was the biggest subchorionic hematoma they had seen in the last decade of their practice. Woo-hoo! We aim to impress. Wiki Link (Essentially my placenta was not cooperating and instead of nourishing Ben it decided to partially detach and just bleed into my uterus, surrounding the amniotic sac. Not cool.)

So for those three months I was laying down and being seen every week or every other week, depending on how exciting things were (i.e. how profusely I was bleeding) I was hearing the gentle explanation over and over from our growing care team that things did not look good. (And in hindsight they each told me they could not believe we even got out of the first trimester, that when they saw the size of our bleed from the detaching placenta they didn’t think we would get a baby out of this.) But over and over we would show up and get a strong heart beat and they would express their amazement. They told us they were praying for us.

Then as things progressed and Ben kept growing against the odds (seeing as all the blood that was suppose to be nourishing him was just leaking into my uterus instead) there became increasing concern about whether I would be okay. I had already lost so much blood that I was on IV fluids with racing heart and dropping blood pressure and it got to the point that they said I needed a blood transfusion (which I ended up NOT getting as my placenta just detached instead and I had to give birth, which distracted us.) But before we got to that point my doctor called me explaining I could not be left home alone at all – besides needing someone to take care of our kids (then 3 years and 1.5 years) we needed someone at home to call 911 when my placenta detached the rest of the way. Normally you have time to get to the hospital but I lost so much blood already that he said I would have just minutes before I would black out and he estimated I would bleed out within half an hour of the detachment – and at this point they felt a complete placental abruption was inevitable, as it was already hanging off.

Yet Ben continued to grow!

At 22 weeks my doctor called and asked me to move into the hospital on bedrest. We knew this day was coming but he said he felt strongly he needed to get me in earlier than the 23 weeks that was their policy. He said he wanted steroids on board for Ben’s lungs so that the moment he was “viable” and they could try to save him. He also said that though they could not save him before 23 weeks, he was increasingly concerned they would lose me before I had time to get to the hospital when it detached. So off we went. (I cried the entire drive there, and for several years after I cried every time I saw the hospital. Leaving my older two babies home to try and save the life of my unborn baby made me feel like my heart was being ripped apart.)

Every day in the hospital I was visited by the chaplain, neonatologist, perinatologist, and a team of others – nutritionist, since Ben was growing well but I was NOT growing, physical therapist since those months on bedrest were impacting my muscles (and my bones) as well as a dietician (they had me on some crazy 4,000 calorie diet or something wild.) And every day we were told it was unlikely we would be taking a baby home and what did we want to do for final arrangements? Burial or cremation? Did we want photos? Did we want the older kids to see his body before he was taken away? If we got to 23 weeks did we want them to try and aggressively save him or do comfort care and hold him until he passed? Every day we had this discussion about death and disability and the side effects of coming four months early. Every day we were planning for our son’s death. The team was amazing and compassionate and kind and we felt loved and supported throughout this heartbreaking ordeal. They were truly inspired and gentle in helping us process this, even as we felt crushed by the reality of what was happening.

Then he was born – they said if I could just hold on until midnight that they would count it as 23 weeks gestation and they could call in the NICU team because he would count as viable. Just hold on until midnight – I went into labor at lunch the next day and we couldn’t stop it, he needed to come out. We raced down the hallway, an ultrasound held to my belly to make sure the placenta hadn’t detached yet and he was still getting oxygen as the team flew around corners and into the OR. As they put the mask over my face I knew when I woke up that he would probably be gone, and I so desperately wanted to kiss him before he passed and tell him I loved him. Then everything went dark for me, and moments later Ben was born. The NICU team waited with outstretched hands to gently carry him to the warmer & try to intubate him – and it worked! (Sometimes at that gestation their windpipe is too tiny to intubate at all.) But it worked, and he was alive!!!! He lived!!

Then he decided to hold a grudge against the ventilator and refused to cooperate with it anymore and his lungs collapsed and they came in to give us “the talk.” About saying good-bye and about how this is what they warned us about and how we needed to bring the kids down to say good-bye. Kit gave him a blessing and he survived the night… and the rollercoaster began.

I remember a few weeks later we got “the talk” again in the family conference room and at that point I remember looking the sweet and compassionate doctor in the eye as he explained the new complications developing and thinking, “Whatever. You don’t need to give me this talk again. Bennett’s got his own agenda.”

He lived. He came home. (It took 109 long, long days, but he came home!) And he didn’t just live, he shocked us all with his growth and determination. He came home to us!

THEN he caught RSV. And my heart just stopped, during that ambulance ride on the 4th of July after his little lungs started to collapse again and he turned blue and we cranked his oxygen tank and flew down the interstate to the hospital. I remember the man sitting next to us for that entire ride calmly reassuring me and telling us to hang in there, his big hand dwarfing Ben as he adjusted the tiny oxygen tubing on my baby’s face.

Where once – AGAIN – the wonderful attending pediatrician in the PICU gave us “the talk” as the RT bagged Ben when he decided breathing was optional and vents are mean. I watched the fireworks over the city as I listened to all his alarms go off and nurses yelling into the hallway for more hands. And they gently encouraged us to bring the big kids down to say good-bye as it didn’t look he would survive the night. But he did – and he came home to us again.

When I was pregnant with him I would lay in bed at night and rest my hands on my stomach and pray for him to move. It was the only way I knew he was still alive. I couldn’t keep breathing unless I could feel that he was still alive because I knew literally any morning I could wake up and he could have passed away in the night – almost every day during those long weeks of bedrest during his pregnancy I would wake up with the bed covered in blood, flooding through my clothes and pad and the mattress cover there because I was bleeding constantly. I knew at any moment he could be gone, as I lay there for three months begging him to please not go.

SO. He lived. Tonight he whispered to me as I tucked him into bed, “Mom, it’s kinda cool that we’re going to Harry Potter world because we’ve got something in common. I’m the boy who lived.”

I think on some level he’s starting to grasp what an absolute miracle he is.

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