Children after HPE

It’s 2am and in laying in bed wide awake with my baby girl sleeping half way on me. I can barely move and the hand I’m using to type this with is just about numb. But, there’s really no other way I’d have it.

If you would have asked me 14years ago if I’d be a stay at home mom of 3 kids, I either would of laughed in your face or passed out in shock. Why is that? Well 14yrs ago I gave birth to my Eric Ryan. He was 1 lb 10 oz and if being a mega preemie wasn’t enough, we would soon find out he had Holoprosencephaly.

I was 23yrs old and Ryan was my 1st pregnancy. The problems started early on. Severe morning, noon & night sickness along with back pains. I was constantly at the Drs and even hospitalized during my 1st trimester. Put on bed rest early into my 2nd trimester, no hint that anything medically wrong with him was ever mentioned. So laying in my hospital bed after waking up from my c-section, no baby in my room was heartbreaking. I didn’t see Ryan face to face til 2 days later because I wasn’t able to get out of bed. I could hear babies crying in other rooms and that longing for him was unbearable. When I finally did see him I felt helpless, I was afraid to touch him, afraid to breath on him and there was no way of holding him. We couldn’t see his face with all the tape and tubes. He was so tiny, he didn’t look human. Scrubbing in, scrubbing out became our world. My recovery was slow and painful but that was all covered up and not spoken of because all focus was put on Ryan and getting him big and healthy enough to come home. We were encouraged to sign away our parental rights when he was 3mths old since and I quote “He is going to die soon anyway and we should move on with our lives.” But instead of listening to those Drs advise, we vowed he would always be surrounded by love, no matter how short his life was going to be. So with a binder full of instructions including Ryan’s daily medication & feeding routine, a calendar full of doctor and therapy appointments, a list of emergency numbers and supply companies, we headed home. Ryan was 4mths old. I don’t remember being nervous or scared, there was no room in the binder for that. I was numb and just followed the outline in the binder. We had a home nurse 8hrs a day, 5 days a week. Teaching me, grooming me and sometimes mothering me, but guiding me to be the best mommy nurse I could be. Daddy was working long hours and out of town on business a lot so my world was Ryan and all his hourly needs. We were in and out of the hospital but I knew that binder like the back of my hand. I could recite from memory all Ryan’s 20 plus medications, include how to spell them, dosages and times given. I knew all his upcoming appointments and nurse schedules. I was on it and in time I was that binder come to life! People would ask us if we were going to have another baby and I would laugh. There was no way I could fit another child into this life, into the binder! We hadn’t done any detailed genetic testing so that was a huge concern. But how would I do it day by day with another child and our busy schedule with Ryan?

Well 5years later I would find out! What a difference 5yrs made in Ryan’s life. Yes, he still had all the same severe medical issues he was born with, but in time we figured them all out the best we could. He was on a new list of medications with new specialists and things were as “controlled” as they could be. We knew what Ryan’s signs were of sickness for the most part and his hospital stays were down to just a few a year. We managed his doctor and therapy appts so we weren’t out of the house 5 days a week. Ryan was even going to school on a regular bases! Something I never would have thought possible.

Pregnancy #2 started off about the same as Ryan’s with morning, noon and night sickness. But it wasn’t as severe and no major back pains. I was considered high risk because of Ryan’s prematurely and HPE, so we saw a specialist. I was on weekly progesterone shots and even had a cerclage followed by bed rest at some point. We new as early as possible that this baby boy, Dominic, was healthy and had no signs of HPE. We even received the genetic test results that had been done for free at the HPE Family Conference that there was no genetic link found, I was 6mths pregnant at the time.

I went into labor at 36weeks on the day of Ryan’s preschool graduation. I’ll never forget that day. I was at the out patient part of the hospital for a non-stress test and apparently, was in

labor. They wanted to admit me right away. The nurse called my dr because I was refusing and became an emotional mess. I told my dr it might be the only graduation I got from Ryan and there was no way I was going to miss it! Besides, his school was full of nurses and even a paramedic would be there, I wasn’t worried about it! So with the promise to return straight after the ceremony, I drove myself in early labor to Ryan’s graduation. As promised we returned right after and I had my c-section a few hours later.

To hear my baby cry as he took his first breath in this world was so wonderful. But was quickly overcome by a sudden rush of fear, needing to be reassured he didn’t have any deformities. What was his birth weight? Why had he stopped crying? Laying there as they closed me up begging daddy for second by second updates. Just tell me his stats!!! The all to familiar feeling of helpless went away the moment daddy walked past the barrier sheet with tears in his eyes, holding our Dominic. Our perfect, healthy, beautiful Dominic.

We were rolled into the recovery room, Dom was placed on my bare chest and for the 1st time I got to breast fed my baby. I got to immediately bond with him and love on him. I got to hear how well he was doing, how perfectly normal everything was going. He got to come with me to my room and I didn’t take my eyes off him for a second. In those moments I was over come with joy and happiness.

The next morning as my new reality sank in, the guilt and sadness of all I missed out on with Ryan slowly sank in as well. This was something I could have never prepared for, this was not in the binder. I should have been basking in the glory of having a beautifully healthy baby, and I was, I really was extremely happy. But there is a such thing as being happy and sad all at the same time. I longed for Ryan once again as I had the day he was born. I just wanted to hold him & love on him and let him know that he was still my number 1. That just because he had another baby didn’t mean I was going to forget him or his needs. That I was the same dedicated mommy as I ever was. I felt guilty. Guilty for having another baby and guilty for what this would mean to Ryan and his care. Because what if I couldn’t handle it all? What if I couldn’t give Ryan the attention and care he needed, that he was used to? Would his health decline? Would he be sad? Would he feel as if he wasn’t enough, that I wasn’t there for him anymore? How was I going to handle having another baby?! What was I thinking?????!!!!!!

But I guess that’s kind of the point…I never “thought” too much about it all, I just did. I did what had to be done regardless of my feelings or really anyone else’s. I get asked a lot, “how do you do it?” My answer has always been, “ I just do.”

So after my mini internal meltdown, I decided I’d do as I always had. Taking it minute by minute, hour by hour, day by day. The day Ryan came home from the hospital I lost control to the binder and never truly got it back. It had worked for 5yrs so why change it now?

As we prepared to leave the hospital and the nurse had given our discharge orders, she asked if we had any questions. Mine was, “What do we do now?”. Her answer, “you go home and raise your baby”. What did she just say? We just go home? No daily, hour by hour schedule to follow? There won’t be a professional nurse waiting at my home to help me? Where the heck is my new binder?! Shock is an understatement.

We went home and began our new lives. My recovery was a lot easier and although Ryan showed signs of jealousy and not appreciating having to share me, like any 5yr old with a new sibling would, Dominic soon grew on him and a place I never knew was empty in our lives was filled. It wasn’t all easy. Me being able to go sleep by Ryan’s unpredictable sleeping pattern came to a crashing end and a new med was added to the list to help him sleep though the night. Ryan got his own room, with a big boy bed and decorations. After all, he’s a big brother now.

Life was definitely more complicated now. Figuring out how to push a wheelchair and hold a baby carrier was interesting. I was touched when people asked if I needed help but always refused in fear if I let one thing go, everything would come tumbling down.

Ryan had his 1st after brother hospital stay when Dominic was about 6mths old. Luckily my niece was living with us at the time so I was able to spend my days at the hospital and daddy took over nights. I gained a whole new fear during this stay. What if Ryan dies and Dom never knows him? Ryan is the center of our lives and for him to be gone and Dom to never know this,

was unfathomable to me. Thank God Ryan pulled through and it was only about a 2 week stay. But that thought was alway in the back of my head.

Over the next few years, Ryan was in and out of the hospital and that was a norm for Dominic. He loved spending the night with us there and playing in the kids area. The staff was always so accommodating and never gave us issues for Dominic being there so much. We never really explained much to Dom, just that brother was sicky. Then about 3yrs ago, Ryan had to be rushed to the ER due to seizures. This was the worse cluster he had in years! Emergency med after emergency med was given with no end to them in sight. Dom was 6yrs old at the time, in the ER with us and was fully aware of what was going on. The staff tried to distract him while grandpa was on his way to pick him up. But Dom must of seen on my face that this time was different. For the 1st time in a long time I struggled to keep it in. I just kept thinking this might be it and it’s going to happen in front of Dom. As I stood there by Ryan’s bedside, Dom came beside me, hugged me and asked me, “Mom, is Ryan going to die?” I squeezed him tight, couldn’t even look at him and just said, “I don’t know baby. But I don’t want you to worry about that right now ok.” Holding back tears he said ok and went back to playing the video game they had brought him. Shortly after that, Dom left with grandpa and Ryan stabilized. I couldn’t help but think of my fear when Dom was 6mths old. The fear of Dom never knowing Ryan. But was this worse? Would Doms pain of loosing him be worse then my pain of him never knowing Ryan?

I guess that’s a question many of us with children after a severely disabled child will eventually have. Dominic is very mature for his age in many ways. Maybe it’s because he’s had to be living with a special needs sibling. He’s had to be more independent because mommy was sometimes too busy with Ryan’s care. Or maybe it was because we don’t hide the passing of Ryan’s special need friends from him and he knows one day it will be Ryan. Dominic isn’t the type of child who likes to talk about his feelings, he probably gets that from me. But he does know he can ask and talk to us about anything and we have never lied to him.

Now that Dominic is a big brother himself to our precious AvaJae. Life has once again changed. The guilt and sadness wasn’t so overwhelming as with Dom’s birth. But it definitely was there deep inside. I can honestly say life is complete with her being here. For years Dominic asked for a sibling “like me”. Meaning not special needs. “I love Ryan Mom, but I just want someone like me”. I completely understood and God granted him his wish. The bond he has with her already is undeniable. He’s such a great big brother and little big brother to Ryan. I try not to think about Ryan passing and what that would mean to Dominic or AvaJae. We still live minute by minute and hour by hour.

2 Comments on “Children after HPE

  1. You are a great writer and who better to tell your story. Thanks for sharing… prayers for your and your families continued strength and peace.

  2. Lovely story of your lovely family. Wishing you all all the best.

    Susan, mom of Beth, 30, septopreoptic HPE

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