Story From the Family

Both the Mother and the Father wished to have a section on the site where they could share the experience and memories with everyone. This page is for them and their words.

Nov 2:
Hello, this is Edward and I wanted to share some memories of our experience with our little one. I do not know quite where to begin and I am sure this page will be updated little by little over the next few days along with my wife’s, April, thoughts.

Henri was a child.. we knew we wanted. We waited all our life for our 1st born. While we admit.. he was conceived a  few months ahead of schedule.. we knew we wanted our child. On Oct 21st, it was quite a surprise to learn at the hospital that we were going to have a baby “NOW” vs the expected Nov 5th date. However.. same time.. I know I found joy in this. Henri wanted trick or treat candy! In the delivery room.. it was hard enough comforting my wife, we were seeing nothing. Then we heard the baby birth music.. and wondered was that for us. Indeed it was! A couple mins later, I looked over the side and asked “Is that our baby?” and the doctors said yes. Moment I could.. I took the picture to show April. (Yes.. he was born nice and pink!)

She was crying.. and happy. Doctors allowed her a quick peck before he was raced off to the nursery due to not fussing or waking up no matter what we tried. Just was heartbeat and breathing.. Once I was able.. I went instantly to the nursery leaving my wife to be in the recovery room after I grabbed her mom to watch her. I wanted to make sure.. I could capture any moments I could that April was missing.. or if.. he woke up.. crying.. anything.. I would have it on video.. This way.. she wouldn’t have really missed anything. I remember doing all i could to encourage him to wake up. Tickle his feet, rub his back, move his arms. I felt even tug backs when I lifted his arms up to his head. I remember fully how soft his skin felt, how his back felt as I rubbed over it. How soft his hair was. Noticing how his upper lip, was that of his Mama. (Generic trait of her mom’s side of the family) I was very sad.. when I was told after 2 hours, he would be taken to CHKD.. Where we were led to believe all would be ok. Next morning however.. when I learned of the EEG results and reading in between the Doctors words.. I didn’t know how to tell April. Did not hide the info.. but still all we had was hope at that point… On Friday, after 3pm. We left the hospital and took April to go see Henri, for what I would consider her first time.. Was very emotional.. seeing him all hooked up to tubes.. Looking like he was just in a deep sleep.. just waiting to be woken up. I started to take pictures, as many memories as I could.. then even more once April was kangaroo care giving. Holding him. Finally able to be allowed skin to skin. Was this day.. that we had him baptized as well.

Made quite a few people in my family happy.. But in reality.. I just wanted any help.. anything to assist Henri to wake up and be with us.. I didn’t want to lose him.. or allow him to pass without anything.. I needed to know.. in one way or form.. he was saved.. Whole time.. I was still capturing every moment I could.. trying to fight the thoughts of how I should feel.. Joy over being a new father? Despair that I just lost a son? Or as if nothing had happened in my life and move back to a routine.. Needless to say, Even today. I am still fighting to know how I should feel.. We decided to wait the weekend out, to see if after the weekend, anything would HOPEFULLY change in his brain activity.. before we took the air tubes out. We were advised by CHKD.. that this would be the option to do.. to help him pass peacefully.. if we choose to.. Even tho we were encouraged to take our time with the thoughts and wishes.. it really felt as if we didn’t have time to really think about this and that in the end.. This was something that had to be acted on soon as we could.. Since end result according to them, no matter what.. would be the same. “No meaningful life” is what we were told.. Just tubes… We let the family and friends know that they should come visit Henri on Sat.. before everything happened. Which they did. Sunday, April and I went to see him. We wanted to get the molds made, prints done, and spend time with him.. which we did.. but so help me.. saying goodbye.. over and over.. how sorry we were. How much we loved him.. it still haunts me. After we took the tubes out.. it was visible that he was turning blue. We both held him. While April had him. I made sure we grabbed as many pictures as we could.. where he was free of tubes.. where he could be loved close..

However.. the hardest thing I could ever do.. was that.. on a time table.. we wanted to love him.. and get him back to bed.. where he could find peace.. However long that took. We did not know.. but we knew it was coming. I just know.. we could not be there for the very end.. it was too hard.. we wanted to leave while we had dome everything to show our love, to get him settled back in again with his red doggy. (Picture on home page, without air tube) He died 50 mins later.. Still even today.. not sure how to feel.. if there was anything more we could have done different. Should we have held out longer..

I know I want to thank everyone who has been a supporter for us during this time. It means a lot to us. In the next day, expect an update here with Aprils memories. Also.. how we felt.. as being parents.. and the joys of what we wanted to give to our son.


Nov 3rd:

From April:
At the end of Feb 2015, we found out I was pregnant. It was a little sooner than I had wanted it to be, but it was still okay since it was more “if it happens it happens”. During the pregnancy all was fine, I felt the baby first move at 20 weeks but it was still too early for Edward to feel.


I didn’t really have much in the way of food cravings, most of the time it was for potatoes and the occasional milkshake as that seemed to calm my stomach. I had nausea and threw up a few times, especially in the mornings when I needed to brush my teeth. Based on the wives’ tales I’d heard, this meant we were probably going to have a girl, and I knew Edward would be especially excited if it turned out that way. We celebrated Mother’s Day, and soon after we learned it was a boy.


Edward was a bit disappointed, as I knew he would be, but by the end of the pregnancy he had found plenty of ideas of what he would be able to do with Henri once the baby was here. Between July and middle of September I was jobless, so things were tough financially and money had dwindled down to where credit cards were almost maxed if they weren’t already and Edward’s income wasn’t enough to take care of his bills and mine. Luckily I found a job near the end of the pregnancy (started working again at 8 months along) which helped a little for the short time I had until Henri made his appearance.

Friday the 16th of October I was able to see my baby again through ultrasound, I hadn’t felt him move that day but after the ultrasound it seemed like he had woken up and poked my abdomen quite a few times before stopping. That weekend we had the baby shower, originally we had planned to have it two weeks before but the hurricane and weather just didn’t want to play nice that weekend. Tuesday the 20th I remember feeling very uncomfortable in my stomach and thought at one point it was going to explode. After a while it calmed down, and I went to work the next day as usual. I was fine until I had gotten to work, then started feeling uncomfortable again. It got worse and by lunchtime I was forced to go home at the urging of other people. Halfway home tingling and weird feelings in my stomach started, and started timing them once I arrived home to find they were about 2 minutes apart. My husband was at the store when I called him to find out where he was (off day for him) and when I told him what was going on he raced home from the store. We walked and tried to see if the tingling/labor feelings would stop, but they didn’t and after an hour we went to the hospital.

They got me back into a room almost immediately to see what was going on. Contractions were certainly happening, but Henri’s heartbeat wasn’t fluctuating like the doctors wanted it to be so after about 30 minutes they wanted to do a C-section. I got teary almost immediately at that news. I didn’t want a C-section! I just wanted to have my baby vaginally so I could recover quicker and do things the way nature intended. But the doctor said to induce it would take 36 hours and they weren’t sure if things would go well, so we went ahead with the C-section idea and they got me all prepped in a very short time. What seemed like moments later, I was given a spinal before the procedure and told I would be numb from the chest down. In reality, I felt the numbness tingling all over my body and face as the table “tilted” and they did the procedure. Edward was at my right shoulder as Henri was taken out and after a few minutes he left my side to go see him. I was afforded a quick peck to Henri’s head before he was taken away, I really had wanted to do the skin-to-skin with him at that moment but figured I would be able to do it after I was taken out of surgery. A little bit later we were told Henri would have to go to CHKD, as he wasn’t responding like he should be. I got to see him once more before he was transported but still didn’t get to do the skin-to-skin like I had wanted to do.


Friday I was finally able to leave the hospital to go see Henri for the first time. I had gotten upset the day before with Edward over things he had said, which made some of my recovery pain worse, and in retrospect, I think I should have stayed until a day later or until I could have done a #2, but I was anxious to see my baby, hold him, feed him, everything. I had even started pumping in the hospital to jumpstart my milk supply, but barely got anything until 4-5 days afterwards.

When we got to CHKD, it was hard to see Henri in his incubator. Almost every time after arriving there, I felt like my voice would crack if I spoke. I was on the verge of tears going there every day, and while it got better the longer I stayed with Henri, it was hard to go and hard to leave. The doctors met with us and told us after running tests, that Henri probably wouldn’t have any sort of meaningful life and would be confined to a bed and feeding tubes for the rest of his life. I cried harder than I had in a long while, I didn’t want that kind of life for my son! He deserved better than that, especially after all we had in holiday plans. We were going to have Halloween with Henri (even had a Darth Vader onesie for him), do Thanksgiving, and go to Busch Gardens to see and get a picture with Santa. All that was taken away from us.

Monday we had decided to take Henri off the respirator if more tests revealed things weren’t getting better. Over the weekend we had lots of people visit him and occasionally he would shift, move his arms, or try raising his head.

We tried to see this as Henri getting better, but test results came back with the same results and the nurses/doctors all said that the movements were more just random and signs that things were beginning to shut down. Skin-to-skin was done every day I went, we got prints, pictures, and everything we could get so we would remember Henri if things kept going the way they were. So eventually we took him off the respirator and held him for a bit afterwards. We even tried giving some breastmilk that I had pumped to see if he would respond to that.


At that point we could see him turning blue and I could barely see him breathe, it was like seeing a fish trying to breathe out of water. After 10 minutes of that I couldn’t hold him anymore and we said our goodbyes, letting the doctor take over as we left. Edward rushed back one last time to see him before we left the NICU, and shortly after we arrived back at home the doctor called to tell us of Henri’s passing.

It still doesn’t feel like it’s been almost 2 weeks since Henri’s birth, more like barely a week. Everything felt like it happened in a domino effect from the C-section all the way to the funeral last Friday. Henri didn’t even survive long enough to see or experience Halloween, the funeral was even the day before Halloween. Things dealing with Henri or even seeing other babies and families don’t seem to affect us much anymore, but some things do trigger the tears and/or emotions like the what if questions. Even today, seeing a video about Spanish kids writing 2 different letters (what they wanted for Christmas and what they wanted from their parents) made me tear up because Henri won’t be able to do that.. or tell us that he wants more time with us as a family.. I barely got to see and bond with my baby as it was. Was he aware of us even though his eyes never opened? That we loved him and tried to keep him here? I don’t know if he was, but I like to think and believe he was aware in one way or another..