Dear Mr. Sparks,
When I found out that I was pregnant both Darren and I were so excited, we had just married a couple of months earlier, and everything seemed to be falling into place nicely. I was lucky with my pregnancy I had no morning sickness, I felt great. We were going to a local GP for our antenatal visits. When we heard our babies heart beat for the first time it was so exciting, it was spot on he said, so we had no reason to have any concern. Our GP did not have the facilities for scanning so we were sent along to another Doctor for it at 20 weeks, we were so excited, we took along a video tape to record the moment.
The Doctor scanning us didn't say anything until I was about to hop off the bed when he just casually said, "your baby has an abnormality, I suggest you terminate" and with that he left the room. Once we went into the other room where he was he asked us if we had any questions, we asked a few general ones, such as what are the babies chances, what was wrong with our baby. He said that he didn't know, and that he would refer us to a specialist in Wellington Hospital. That was on a Friday afternoon, so we were left for the whole weekend only knowing that our baby could die, because there was something missing and the stomach was in the chest. Not much to go on, but I got on the Internet and found CHERUBS, I wasn't even sure if I had the right defect! I read some of the statistics and held on to the positive ones.
On the Tuesday of that week we had our appointment at Wellington Womans Hospital, it was confirmed our baby had CDH, but she had a chance and we were hanging on to that. We would out her sex, because I needed an identity to my unborn child, my Mum went along to, to help is digest all this information.
The rest of my pregnancy I tried to stay positive, we had to go to the Hospital each week for a scan. I developed polyhydramnious and was "drained" four times, with the average of about 1.5 litres being taken out each time, it certainly wasn't pleasant, but it was a small price to pay for my little girl, who we had decided to name Rebecca, Becky for short.
We were told that Rebecca had no obvious liver in her chest and that was supposed to be good news, we had an amniosantesious, and that came back fine, so Rebecca had no other complications. We were told what to expect when Rebecca was born, we weren't going to be able to hold her, she would be rushed away, things will be up and down est. thought I was prepared.
At 38 weeks I was induced, I was lucky I had a relatively easy labor I had Darren and my Mum, my midwife Catherine and a team of NNIC nurses waiting (my Dad and sister waiting outside), Rebecca was born at 8:43pm, my midwife put her in my arms for a few seconds, I got to say Hi to her and introduce myself, I told her I loved her and I gave her a kiss, she had one little eye open looking at me, then they took her away. Darren went with Rebecca to the neonatal unit. I didn't see her again for a few hours. Rebecca's doctor came and saw us before we went to see her, he said that things weren't good, she did have some liver in the chest, and she probably wouldn't make it through the night.
When I finally got to see her, she was so beautiful, I couldn't believe that this was my little girl. It was so strange, she looked perfect, how could she be so messed up inside. I didn't even notice all the tubes, all I kept hearing was the machines beeping, it was horrible. She had already been medically paralysed, so her body just lay there, I held her hand all night.
The next day things hadn't improved, so they inserted a chest drain to get some extra fluid out of her chest, it helped a little.Then for days after that she only improved only a little. Rebecca got really puffy because she was paralysed I was sick of hearing people say how big she was, she was born 2685grams, hardly big. Rebecca had big feet, just like her Daddy, some newborn booties were even too small!
Things just continued at that point, she got a longline just before Christmas, but then on Christmas Day she started to go downhill, her longline had an infection in it, not only that, so did her ventilator tube. We took all Rebecca's Christmas presents to the hospital and opened them there, telling her what they were (still paralysed).She slowly got a little better after those infections had been dealt with, so on New Years Eve they decided to take off the paralysing drug.My baby opened her beautiful eyes, they were dark blue. She held my finger, she even smiled, it was wonderful. She was weaned off Nitric, off the blood pressure drugs, things were looking good. This lasted for about a week then she went downhill again. Yet another infection had invaded her little body.They told us that she was going to die within a
couple of days, the surgeon gave us an option, we could let her die slowly over the next few days, or we could let her have the operation, but she would probably die on the operating table. We decided to go for the operation, we had come this far I still had to give her that chance, the operation was to be the next day. I stayed with Rebecca for the whole night, we were luckily able to stay at the hospital for a couple of nights.
The next morning I read to her "Green Eggs and Ham." I cried most of the way through it, she was awake for the whole morning until just before we took her to theater. She was aloud to take her Winnie the Pooh with her, she would have loved that. We said our goodbyes, not knowing if we would see her alive again. We waited and waited we were told it could take five hours. But two and a half hours later we were told we could go and pick her up, she had done wonderfully through the whole operation, and she had a patch on her diaphragm.We got her back to NNICU, and she was doing great, oxygen requirementswere great, ventilation was being weaned.
Then again backwards, and from there slowly it kept going downhill. I think at that stage I knew that she wasn't going to make it, On the Saturday night I stayed up all night with her, she was awake the whole time too, we had a great time, I even "played" with her. She had a paddington bear hanging from her open incubator and she loved to watch him, and I was swinging him around, she loved it, she even threw in a few smiles for me, and would pucker her lips when I kissed her. On Sunday I said told Darren he couldn't go to work the next day, I knew Monday was her day.We went in on Monday morning and her saturation were in their 30s.I read Green Eggs & Ham again, she opened open eye and watched the whole time I read to her, she was so weak. The Nurses said not to touch her that she was fragile, I told them I wanted to hold her, she was going to die and I needed to hold her.
The nurses got me a chair and placed my little girl in my arms, held her for a couple of hours, so did Darren, it was such a confusing time, having waited so long to hold her, but knowing that by the end of the hold she would have gone. The doctors then decided to turn off Nitric and that she may not cope without it, if she did we would be able to move to another room for privacy, so I held her again. Within 30 minutes she had gone, I told her she could go, that it was alright, it was the hardest this I have ever said. I am glad that I told her that because everything else we ever asked of her she never let us down, and I didn't want her to feel as though she had with this. They took out Rebecca's tubes, we then bathed her and dressed her, she looked so beautiful in her Winnie the Pooh outfit which we got her.
I don't regret any of our decisions that we made for Rebecca, I miss her terribly, but this time with her is irreplaceable and her siblings to come will be told wonderful things about her. I still talk to her all the time and write to her in her journal, I tell her how much I love her most. She is the best thing that has happened to me, and my time with her was amazing.
At Rebecca’s funeral so many people came it was amazing to see how may people cared, I don’t really remember much of the service, only the part where we placed her in the ground, and even then it is me looking from above, I guess I was with her. We played her song "Don't Wanna Miss A Thing." After the service we wrote messages on balloons and sent them to Rebecca, so now when I see a rainbow, I think of Rebecca playing with her balloons, and I know that she is happy.
Sincerely,
Rebecca's mom, Nikki Hodson (New Zealand)
When I found out that I was pregnant both Darren and I were so excited, we had just married a couple of months earlier, and everything seemed to be falling into place nicely. I was lucky with my pregnancy I had no morning sickness, I felt great. We were going to a local GP for our antenatal visits. When we heard our babies heart beat for the first time it was so exciting, it was spot on he said, so we had no reason to have any concern. Our GP did not have the facilities for scanning so we were sent along to another Doctor for it at 20 weeks, we were so excited, we took along a video tape to record the moment.
The Doctor scanning us didn't say anything until I was about to hop off the bed when he just casually said, "your baby has an abnormality, I suggest you terminate" and with that he left the room. Once we went into the other room where he was he asked us if we had any questions, we asked a few general ones, such as what are the babies chances, what was wrong with our baby. He said that he didn't know, and that he would refer us to a specialist in Wellington Hospital. That was on a Friday afternoon, so we were left for the whole weekend only knowing that our baby could die, because there was something missing and the stomach was in the chest. Not much to go on, but I got on the Internet and found CHERUBS, I wasn't even sure if I had the right defect! I read some of the statistics and held on to the positive ones.
On the Tuesday of that week we had our appointment at Wellington Womans Hospital, it was confirmed our baby had CDH, but she had a chance and we were hanging on to that. We would out her sex, because I needed an identity to my unborn child, my Mum went along to, to help is digest all this information.
The rest of my pregnancy I tried to stay positive, we had to go to the Hospital each week for a scan. I developed polyhydramnious and was "drained" four times, with the average of about 1.5 litres being taken out each time, it certainly wasn't pleasant, but it was a small price to pay for my little girl, who we had decided to name Rebecca, Becky for short.
We were told that Rebecca had no obvious liver in her chest and that was supposed to be good news, we had an amniosantesious, and that came back fine, so Rebecca had no other complications. We were told what to expect when Rebecca was born, we weren't going to be able to hold her, she would be rushed away, things will be up and down est. thought I was prepared.
At 38 weeks I was induced, I was lucky I had a relatively easy labor I had Darren and my Mum, my midwife Catherine and a team of NNIC nurses waiting (my Dad and sister waiting outside), Rebecca was born at 8:43pm, my midwife put her in my arms for a few seconds, I got to say Hi to her and introduce myself, I told her I loved her and I gave her a kiss, she had one little eye open looking at me, then they took her away. Darren went with Rebecca to the neonatal unit. I didn't see her again for a few hours. Rebecca's doctor came and saw us before we went to see her, he said that things weren't good, she did have some liver in the chest, and she probably wouldn't make it through the night.
When I finally got to see her, she was so beautiful, I couldn't believe that this was my little girl. It was so strange, she looked perfect, how could she be so messed up inside. I didn't even notice all the tubes, all I kept hearing was the machines beeping, it was horrible. She had already been medically paralysed, so her body just lay there, I held her hand all night.
The next day things hadn't improved, so they inserted a chest drain to get some extra fluid out of her chest, it helped a little.Then for days after that she only improved only a little. Rebecca got really puffy because she was paralysed I was sick of hearing people say how big she was, she was born 2685grams, hardly big. Rebecca had big feet, just like her Daddy, some newborn booties were even too small!
Things just continued at that point, she got a longline just before Christmas, but then on Christmas Day she started to go downhill, her longline had an infection in it, not only that, so did her ventilator tube. We took all Rebecca's Christmas presents to the hospital and opened them there, telling her what they were (still paralysed).She slowly got a little better after those infections had been dealt with, so on New Years Eve they decided to take off the paralysing drug.My baby opened her beautiful eyes, they were dark blue. She held my finger, she even smiled, it was wonderful. She was weaned off Nitric, off the blood pressure drugs, things were looking good. This lasted for about a week then she went downhill again. Yet another infection had invaded her little body.They told us that she was going to die within a
couple of days, the surgeon gave us an option, we could let her die slowly over the next few days, or we could let her have the operation, but she would probably die on the operating table. We decided to go for the operation, we had come this far I still had to give her that chance, the operation was to be the next day. I stayed with Rebecca for the whole night, we were luckily able to stay at the hospital for a couple of nights.
The next morning I read to her "Green Eggs and Ham." I cried most of the way through it, she was awake for the whole morning until just before we took her to theater. She was aloud to take her Winnie the Pooh with her, she would have loved that. We said our goodbyes, not knowing if we would see her alive again. We waited and waited we were told it could take five hours. But two and a half hours later we were told we could go and pick her up, she had done wonderfully through the whole operation, and she had a patch on her diaphragm.We got her back to NNICU, and she was doing great, oxygen requirementswere great, ventilation was being weaned.
Then again backwards, and from there slowly it kept going downhill. I think at that stage I knew that she wasn't going to make it, On the Saturday night I stayed up all night with her, she was awake the whole time too, we had a great time, I even "played" with her. She had a paddington bear hanging from her open incubator and she loved to watch him, and I was swinging him around, she loved it, she even threw in a few smiles for me, and would pucker her lips when I kissed her. On Sunday I said told Darren he couldn't go to work the next day, I knew Monday was her day.We went in on Monday morning and her saturation were in their 30s.I read Green Eggs & Ham again, she opened open eye and watched the whole time I read to her, she was so weak. The Nurses said not to touch her that she was fragile, I told them I wanted to hold her, she was going to die and I needed to hold her.
The nurses got me a chair and placed my little girl in my arms, held her for a couple of hours, so did Darren, it was such a confusing time, having waited so long to hold her, but knowing that by the end of the hold she would have gone. The doctors then decided to turn off Nitric and that she may not cope without it, if she did we would be able to move to another room for privacy, so I held her again. Within 30 minutes she had gone, I told her she could go, that it was alright, it was the hardest this I have ever said. I am glad that I told her that because everything else we ever asked of her she never let us down, and I didn't want her to feel as though she had with this. They took out Rebecca's tubes, we then bathed her and dressed her, she looked so beautiful in her Winnie the Pooh outfit which we got her.
I don't regret any of our decisions that we made for Rebecca, I miss her terribly, but this time with her is irreplaceable and her siblings to come will be told wonderful things about her. I still talk to her all the time and write to her in her journal, I tell her how much I love her most. She is the best thing that has happened to me, and my time with her was amazing.
At Rebecca’s funeral so many people came it was amazing to see how may people cared, I don’t really remember much of the service, only the part where we placed her in the ground, and even then it is me looking from above, I guess I was with her. We played her song "Don't Wanna Miss A Thing." After the service we wrote messages on balloons and sent them to Rebecca, so now when I see a rainbow, I think of Rebecca playing with her balloons, and I know that she is happy.
Sincerely,
Rebecca's mom, Nikki Hodson (New Zealand)
No comments:
Post a Comment