Rogula, Hailey Elizabeth

[left:d1ddb9f893]http://www.cherubs-cdh.org/Album/new/rogula-hailey.jpg[/left:d1ddb9f893]I found out that I was pregnant the day before fathers day June 1997. What a wonderful gift for my husband!! It came as a bit of surprise to us since we were still getting used to being parents to our 6 month son Max! We were a bit worried, I mean could we afford another baby yet? Who cares! We’ll work it out... We’re having another baby!!

I had a very uneventful pregnancy, and was not worried about anything since I had such a wonderful pregnancy before. In hindsight I wish I had been more concerned...It was hard to concentrate on my baby growing inside of me when I had to keep up with my little one learning to crawl and walk. We went for our ultrasound at 22 weeks and everything checked out fine. She rushed us in and out so fast if there was anything abnormal to see I doubt if she would have found it. I had it in my mind that I would request another ultrasound in my third trimester to check size and stuff, I had a very tough delivery with my first born. I never got the chance...

I went to visit my parents the day after Christmas, they live 1.25 hours away. I took Max (13.5 months at the time) with me; we were only going overnight, and my husband had other things to do so he stayed home. I should preface this by saying that I really wasn’t feeling 100%, but not terrible either. I was just run down from the holidays, or so I thought and I was 32.5 weeks with a toddler at home; just figured I’d rest while my parents played with Max. As I was pulling out of the driveway, I looked at my husband (Michael) and he said is everything OK? I said yeah, but just sat for minute, and then blew it off. I guess I sort of had a premonition that I should stay home but I ignored it. About 1.5 hours after getting to my parents, I was lifting Max and felt a trickle, I thought I just had to go to the bathroom, but the water just kept coming, not a gush yet, but a strong steady stream. I freaked!! It was too early! I called my doctor and husband and my Dad drove Max and I the one hour back to our hospital. As the drive progressed-slowly- my water started gushing more and more, and I started contracting. My father was wonderful and very calm about the whole thing. By the time we got to the hospital, I had hardly any amniotic fluid left. We couldn’t believe how small my belly was already (they broke my water with Max, and he was full term 7lbs 12 oz). Anyway, I think I was only at 1 or 2 cm, I don’t really remember. My doctor came, and decided to let my body and the baby (we didn’t know her sex till she was born) decide if it was time. For a while, the contractions progressed and I dilated slowly. Then around 8pm or so ( we got there at 4pm) they fizzled out.

The neonatologist came in to explain what would happen once the baby was born; I would most likely not be able to hold her right away. The tests that would be done etc. My doctor didn’t want to give me anything to start or stop labor, but it looked like it was stopping. He prepared us for a stay in the hospital and hopefully keep me pregnant as long as possible, but if labor started again, I would deliver. He left and around 1am I sent Michael home to rest and make sure Max was OK. I told him to come back after breakfast. About 3am, the contractions started up again and I knew I was going to have my baby. They had discovered that she was small for her age, but nothing else. I called my husband and he came right back we only live 5 minutes from the hospital. By 6am I’m only about 3cm or so, and begging for pain relief, they wouldn’t give the epidural till 5 cm so I got a shot instead to get me by. About 8am they finally decide to give me the epidural and ordered it. The doctor checked me and they started to hook me up, I’m contracting one on top of the other and can’t stand the pain, after they lean me forward to inject me, I cry I need to push! I quickly lay back down, not really so quickly, because I have so many tubes in and out of me, and Hailey kept laying on the cord so I was only allowed to lay a certain way, and they were pumping saline into me to keep her floating. The doctor checked me again and I was 10cm and fully effaced. I went from 6cm to 10cm in 2 minutes!! Must have been gravity! I started pushing (the epidural didn’t kick in till after she was delivered). I only pushed a short while, and she was out! Its a girl!!! 8:33 am. (I had a bad feeling like something wasn’t right; I think I sort of knew we would never bring her home-almost felt like when they said "it’s a girl" I knew I couldn’t’ keep her--I can’t explain it)

My doctor didn’t make it back in time, she came so quickly, he was driving through a snow/ice storm and arrived right after she came out. They took her over to her warming table while quickly examining her, she never cried. I kept asking is she OK? I don’t hear her crying! They told me she was intubated immediately, and I wouldn’t hear her until she was extubated.

Michael watched the NICU team with her, and before they took her to the NICU they rolled her over to my bed so I could finally see my baby girl, she opened her eyes and I know she saw me! They took her away and finished up with me. Apparently her cord was very short and I had abrupted, the placenta was also starting to calcify (age). I found out later that Hailey had fetal growth restriction which was why she was on the small side..

We called everyone, still assuming we "only" had a preemie 3lbs 4ozs, 16.5" and that she would be in the hospital for a couple of weeks. After an hour they let me get up and go shower, I had just finished when my doctor came in and said he had some bad news. He explained that she had CDH, and just what that meant. We had never even heard of it before. We couldn’t believe it! How?? I asked through tears what did I do wrong? Did I hurt my baby somehow? It’s perfectly normal, and totally ridiculous to feel that way. He told us they would be flying her out to University of Michigan hospital very shortly. A surgeon from UofM came and talked briefly with us and then a nurse took us down to the NICU to see our baby girl, Hailey Elizabeth Rogula. Needless to say our heads were spinning and we really didn’t completely understand what CDH was, or what was going to happen to our beautiful little girl. We just knew that we loved her. By the time we got down to the NICU, they were finishing prepping her for the flight, and the medivac team had arrived. We met with the neonatologist who flew in to pick her up and he filled our heads with more info and we signed a bunch of release forms and consent forms. (including one for ECMO) We finally were able to go in and see Hailey, just for two or three minutes though, she opened her eyes again and looked at us when we talked to her. I didn’t know it would be the last time she would ever see us I would have insisted on staying with her longer. Then it was time to let her go, we were told to wait a few hours before heading to the hospital so that they could get her settled and run a bunch of tests. We went back to my room, and my doctor had given me an early discharge, so I was able to leave almost immediately. We came home to a house full of family and a very confused little boy. He really didn’t know about Hailey, at least as far as we know, he’ll probably ask us about "the baby" when he’s older and has a larger vocabulary. We gathered our things and clung to our little boy, and headed out to the hospital. We don’t even remember how we found our way, but we did. We visited with Hailey for a while, and went to find a hotel room for the night, neither of us had slept in over 24hrs.

The next morning (the 28th) we went back to the NICU feeling very exhausted, confused and depressed. We were told she was doing well, but it would be a long haul. She needed to get strong enough to have the surgery to repair the hernia, and there was no telling how long that would be. I began pumping breast milk for her in hopes that someday she would be able to take it. The next 10 days were a series of ups and downs. Very stressful, and extremely exhausting. We would sit and stare at her, and talk and sing and hum to her; I really think she knew we were there. We were willing her to be strong and to get well. We didn’t touch her very much, because the slightest things would send her stats soaring or dropping. I was able to help reposition her a few times, and change her diaper or wipe her mouth a couple of times too. That meant the world to me! We commuted back and forth, we needed to be with Max too. She went back and forth between a conventional vent and an oscillating one, and seemed to be doing OK. They just have so many problems when they’re preemie and then with CDH too... The day before she died, Michael went back to work half days, and we took our only day off from visiting with her, she was doing fairly well, and we needed a rest. If only we had known. We were both just mentally and physically drained. The hospital called the next morning and had to switch her vent again, but she was doing OK, so they said to come out in the afternoon. I knew when the phone rang that it was bad news... just before we were leaving to go out there, they called back and said they had to put her on ECMO, she was not doing very well. We told them to go ahead if it was immediate, and we would be there in 30min.

On the drive out there I had a really bad feeling. We read more about ECMO while driving, we had avoided it so far hoping she wouldn’t need to be put on it. They hadn’t started the procedure when we arrived, so thank god we had a couple of minutes with her. The surgeon told us how it would progress, it would take 30-60min, said it was relatively simple to do. Yeah right! When an hour and 15 minutes passed, and still no word, we began to worry, Michael really believed she would be OK, but I knew in my heart that she wouldn’t. I went to pump and he came and got me 10 min later.

The doctor needed to talk to us. They were having trouble accessing her arteries, they were just too tiny. They would try lower in her neck or upper chest, but it didn’t look possible. We were losing her! Our hearts just broke. The Neonatologist came back a few minutes later to say they would try to keep her on the oscillating vent, but she was not responding well, and would not make it much longer. We were balling, I asked to hold her and he took us immediately to her. Her nurse asked me if we had had her baptized-no-would we like her -yes-then another nurse quickly baptized her. They asked if I wanted to hold her with or w/o the vent, I said w/o! Just give me my baby girl! They quickly bundled her and handed her to me and she died almost immediately and I held her and rocked her and cried to her. She never opened her eyes again and I never got to hear her sweet voice/cry. We spent quite a while holding her. They took pictures, put her in a beautiful white gown and gave her back to us for as long as we wanted. We eventually left with her few belongings in a bag and little purple box.

We consented to an autopsy to see if there were any genetic abnormalities or whatever, and on the off chance that it might help in research development about CDH. We still don’t have the autopsy, it takes 6 weeks to 4 months.

Her memorial service was beautiful and she looked beautiful. I miss my little girl so much, I physically ache for her at times... I know she is always with me and always will be. Thank you God for blessing us with her... I wouldn’t want it any other way. I love you my sweet Hailey...... Love, Mommy


Written by Hailey's mom, Kate Rogula (Michigan)
1998