31 May 2011

The Story

This is the story of how my daughter came into the world. You should probably read the Prologue first if you haven’t already. Some of you may find it a bit heavy going.

My mum had turned up in New York a few days previously. We celebrated my 27th birthday on the Sunday, I remember being very uncomfortable, G and my mum bought a lovely strawberry and chocolate cake for me from a Brooklyn patisserie and I had trouble eating my piece having so little space in my stomach.

A few days later, early on Thursday morning my mum accompanied me on the subway up to Manhattan for a scheduled appointment with my obstetrician. I used the bathroom at the doctor’s office and when I turned around about to leave noticed water on the white toilet seat. Wondering how on Earth I had managed to shake water from washing my hands that far across the room, I cleaned it up and thought nothing of it. I went into the doctor’s room and was hooked up to the monitors as was the routine. The baby and I were attached by a twin vessel umbilical cord. This was discovered early on and I had lots of extra scans and monitoring especially towards the end of the pregnancy to make sure the baby was developing normally and growing well. Normally there are three blood vessels in the umbilical cord. I had researched the condition when I first found out about it in England and had predictably got very upset and worried. So I printed the research I had done and buried it somewhere not to be looked at till after the baby was born. All the scans however had reassured me that there was in fact nothing wrong with our baby girl.

The doctor gave me an internal examination and immediately noticed some fluid she believed to be amniotic, it was. This meant my waters had broken, but in a small non-dramatic way. I was told the baby would need to be delivered in the next 24 hours to avoid infection. It was only a week before my due date so no problem there. The doctor left me with a few hefty sanitary towels and told me to go home and wait for the contractions to start and if they didn’t to meet her at the hospital at 8pm. She left the room and my mum turned to me and held my hand. She was crying. I asked her what was wrong and she said she couldn’t believe I wasn’t going to be her little baby any more. I looked at her and got a lump in my throat too. I had never felt more like her frightened little baby in my life. We took a cab back to Brooklyn rather than risking the subway. I called G when we got home and told him not to panic (ha ha) and he met us at home by the early afternoon. We waited and waited but nothing happened. Mum made us a nice meal, I can’t remember exactly what it was but I do remember that it was nutritious and light. I guess she was trying to help me in the only way she could.

We waited the whole day till it was time to go to the hospital and that evening got a cab to Manhattan and booked into the hospital. Nothing much was happening except for my waters breaking a little more. It felt like a lot to someone who had never experienced their waters breaking before. It wasn’t till much later that night when I didn’t start contracting even after being given some drugs (I forget what now) that they investigated to see how much my waters had actually broken. They found that there was a whole lot still not broken so they broke the waters. Then all Hell broke lose. The baby was back to back so that, instead of facing backwards, which is the norm and the best, she was facing forwards which makes everything a little more awkward. The contractions started but what I actually felt was just a back pain so overwhelmingly painful I couldn’t even feel the contractions. Eventually it was just too much to bear so I asked for an epidural. As the nurse hugged me to her whilst the anesthesiologist stuck the needle into my spine I tried to warn her that I could feel my waters about to flood on to her and finally break completely but she mistook my spluttering for nervousness and shushed me, just as I drenched her from the knees downwards. Whoops. Well, it took my mind off the needle in my back slightly, and she assured me she wasn’t bothered by it, yeah right. Epidural, not pleasant at all, but the relief that flooded over me once the pain was gone put me on top of the world. Once I had finished celebrating I settled down to a really good night’s sleep whilst poor, G perched on the chair failing to get comfortable, didn’t sleep at all.

The next morning, although I didn’t realize it, I had progressed well and was dilating nicely. That Friday the time all merged into one and I’m not really sure when the action started or how long it lasted. My mum came in to be with us in the morning, it was extremely reassuring to have her with us. Unfortunately we hadn’t even gone through the hardest part yet and G already had one sleepless night under his belt.

My doctor came in and it was time to push. It was very difficult to feel the contractions as I was so numb from the epidural but she told me I was pushing well and doing a good job (later on when she was out you could see a angry red mark where she had been pushed over and over by me onto something hard). The pushing went on and on but the baby just wasn’t going anywhere. I don’t know how long I was pushing for. I do distinctly remember seeing Graeme looking fairly horrified backed into the corner of the room and reassuring him between the pushing that I was OK and I was yelling with the effort of pushing and not through pain. The doctor remarked she hadn’t seen anyone smile and reassure those around her when actively trying to push a baby out of themselves. I was worried about poor G though, he could have done with a shoulder to lean on, my mum was with me, I think she was holding one of my legs in the air for me. Anyway, the pushing went on, we tried a few different positions to try and help her out and then horror of horrors the epidural started to wear off. The back pain returned and it was overwhelming and sickening and just unbearable. I asked for my epidural to be topped up, after what felt like an eternity the anesthesiologist returned and gave me some more medicine. It didn’t work, no relief, not even a little. I started to vomit, and I couldn’t stop. It suddenly occurred to me that I might die. To be so completely defenseless and at the mercy of others was something I was not used to. It was pretty terrifying. My obstetrician walked in and said my name and looked me in the eye, she didn’t need to tell me what she was going to say, I burst into tears, I knew she was going to suggest a c section. By that point I was so scared that it was a relief. Everyone started to fuss around me and mutter about getting me in there quickly. We had already decided if it happened my mum would be the one who came with me so G was left alone while I was wheeled into surgery and my mum prepared to join me.

As they hooked me up to whatever they were hooking me up to I remember someone asking me to try to stop vomiting. Well, I don’t know about you but I’ve never been a great fan of vomiting, but despite my best efforts I couldn’t quite manage to stop myself. It was very weird vomiting where there was no retching of any kind, I just opened my mouth and out it came. The baby was taken out pretty quickly. The obstetrician remarked that the first thing she saw was the baby’s face looking up at her and she swore she smiled and that she had never seen that before. I felt nothing, no movement no nothing, they had to give me a spinal block because the epidural was no longer working so everything south of my arms was just dead. They took her away for quite a long time before wrapping her up and showing her to me. All I could see was her puffy little slits of eyes and her red face. They made light of the fact they just needed to pop her into the NICU to check she was fine and in my delirious state I didn’t think much of it. Later my mum told me she had been worried as soon as the baby wasn’t handed straight to us. Being sewn up takes an eternity, it’s such an anticlimax, it goes on and on and on, you wonder when it will ever end. I remember feeling like I was drifting into unconsciousness but being very scared to let it take me so flapping my arms around to get someone’s attention till they came to speak to me. I couldn’t speak only wave.

I was taken in to recovery and slept for a while, who knows how long. Then I heard the nurses muttering about another person coming into recovery, I remember them mentioning “him”. They started getting the bed next to me ready. I was affronted, they’re going to bring some random man in here when I’m recovering, what the Hell. So they bring the guy in, and it’s my husband. Two days and nights (it’s some time on Saturday by now) with no sleep and no food finally got the better of him and he was found sliding down the wall in a corridor by some nurses.

A little later on G and my mum are both sitting by my bedside in the recovery room and my doctor walks in accompanied by perhaps three other doctors. Hmm, I remember thinking this seemed a little official. They started talking, I could tell something very bad was happening, but I had to stop them. I was flat on my back, I couldn’t look into their eyes. I was insistent that I had to sit up, I had to look them in the eye while they told me the news they had come to break, I had to see the expressions on their faces to read how bad the situation was, I wanted to be part of the conversation. Eventually they conceded and let me sit up a tiny bit and then explained to us, without softening the blow in any way, that our daughter’s esophagus was not attached to her stomach but just stopped in a dead end after her mouth. Also, what esophagus she did have was attached to her trachea providing a direct route for any accumulation of fluid in her mouth, and there was a lot, to go straight to her lungs and make her very ill. All at once, they didn’t stop, they told us they would have to perform surgery as soon as possible but that her esophagus would probably not be long enough so they would fit a feeding tube directly through her tummy into her stomach. They said by the time she reached 18 months old to perhaps a few years old they would be able to go and harvest a part of her intestine and use it to make her an esophagus and hopefully attach her and finally take her stomach tube out. There was no reassurance that she would be OK in the end, just a plan of what was to take place. And then they left. We still hadn’t seen her, we had been apart for quite a few hours by then. What goes through your mind when you receive news like this? I think the first has to be a reality check, did that just happen? And then you pretty much descend into numbness. I don’t think you deal with these things till way after they happen. It was over 5.5 years ago and my heart is racing about 3 times its normal rate just typing these words into my laptop. The conditions are called esophageal atresia and tracheoesophageal fistula.

By the evening, twelve hours after her birth, we were finally allowed to see her. We went to the NICU, which in itself is fairly frightening, the size of the preemies can be just breathtaking. The littlest ones with the eyes taped over and just so skinny. We got to hold her for the first time, oh she was beautiful, with her big dark eyes, she was so alert just reading everything she saw in my face, soaking everything in, amazing. She touched us very deeply. She had one solitary tube taped to her face going into her nose and down into her throat to stop her saliva from pooling and going into her lungs. I think we didn’t really dare to get too excited about being new parents, we loved her for sure but it wasn’t a very good time to get attached. We knew we had a big operation looming sometime in the next few days and she looked too small and fragile to be put through that.

The first thing G did the next morning was to get the photos printed so that we could see her beautiful little face. Those two shots he had printed became very special to us. The first thing the doctors and surgeon needed to do was use imaging to find out how much esophagus was available. The results were a little inconclusive but they set up the surgery for the Monday when she would be 48 hours old. The surgeon warned us that there didn’t seem to be very much tube to reattach and that she may only be able to close off the linkage between the esophagus and trachea plus install a GI tube (stomach feeding tube) and another line for IV fluids that attaches to the neck, with time I have forgotten some of the medical terms. This meant she still wouldn’t be able to feed through her mouth. Monday was the hardest day. The surgeon (amazing wonderful woman) explained that our little bean would go into surgery very early in the morning and by about 6 in the evening she hoped to visit us in my room at the hospital to explain how it had gone. The three of us holed up in the hospital room and tried desperately to think of anything else other than what was happening to our baby. The evening mercifully arrived and the surgeon came to speak to us. She was very happy with how the surgery had gone and against the odds had just managed to attach her esophagus to her stomach and close off the link to her trachea. We just needed to wait and see if the repair would leak and whether she would need a secondary operation to fix that. We were able to go and see her in the NICU (Neonatal Intensive Care Unit). It was reassuring to see she was alive but what we saw was disturbing. Wires and tubes attached to every part of her body, bruises all over where needles had been stuck and her body was swollen to possibly twice it’s width. She wasn’t even able to wear a diaper with everything that was going on on her tiny little body. We weren’t allowed to touch her as they explained that with a newborn’s immature central nervous system, when they are in pain they can experience a light stroke of the hand as very painful. The next few days were hard, it didn’t help that after 4 days I was discharged so that I had a 90 minute subway ride to Manhattan’s Upper East side everyday from 5 days after my surgery. Some mornings we would go in and the news would be frightening, one morning we found out her lung had collapsed during the night and another morning she had managed to pull her breathing tube out. The nurses were amazing and always very pleasant and comforting no matter what time I called and asked for an update.

If I couldn’t sleep because I had a bad feeling I could call in the middle of the night and they would talk me through what was happening with the baby. Overall as the days went by the vibe got more and more positive. Still to this very day no one has reassured us that she will be OK, but she is now. It wouldn’t have hurt to have some reassurance at the time. We were eventually allowed to stroke her hand and then the day came when they lifted her wired up little body onto a pillow and let us hold her on that pillow. It was a very lengthy and complicated process lifting her out of her isolette and installing her on our laps but it was very reassuring to be able to hold out own child and encouraging to be making so much progress. One morning I had a call from the surgeon to ask me to rush to the hospital because they were going to give her her first ever meal of breast milk into her GI tube, I had been pumping for the day when this would be possible. When I got there the nurses excitedly told me how she had taken her first ever breast milk, I had missed it, there had obviously been a miscommunication between the nurses and the surgeon and the nurses didn’t know I was rushing in. But I really didn’t mind, nothing could spoil that day. Later on that same day they fed her again and I got to be there that time. The amounts of milk were miniscule as they were really just testing out her system to see if it could take it. Day by day she made more progress and eventually graduated to the second room of the NICU where the slightly less ill babies live. In here they finally let me try to breastfeed her. She didn’t catch on too well unfortunately but we got there in the end after a rough start.

Poor G had made the difficult decision to return to work so that he could take his 2 week paternity leave after she came home so he could only make it in the evenings when he would read to her. My mum accompanied me to the hospital every day, took me out to lunch and somehow managed to keep our home ticking along too.

Almost 4 weeks after her birth, quite suddenly, they announced she would be going to the third and final room and we’d be able to take her home. We were surprised and delighted although a little bit nervous about properly caring for her on our own. She still had her GI tube attached to her tummy so I had to be taught how to keep it clean. It needed to be left in for a while longer just in case something went wrong. We finally got to take her home to Brooklyn and be a family a month after I went into labor. About a week later that pesky GI tube was taken out and she has continued to make remarkable progress ever since. We are not aware of any lasting complications, she is like every other little girl now except only we know (until now) how very brave she is and how strong and valiantly she fought, never crying, and smiling though she was so tiny. I still feel bad for her when I think of those long hospital nights when she should have been cuddled up in her mummy’s arms. I am so lucky to have her and I will never forget that. About 6 months later we had rented a car for a day trip and we were almost home when the song “Wires” by Athlete came on the radio. The words just triggered something in both G and I and we both sobbed, that was just the beginning of us “dealing” with it I suppose.


8 comments:

  1. Such a wonderfully written story... And such a touching set of photos. Dear little bean :) xx

    ReplyDelete
  2. thank god she's ok now.. such a traumatic time :-(

    love Hayley xxx

    ReplyDelete
  3. Thanks so much Hayley, I guess life has its ways of reminding us how very luck we are :) xx

    ReplyDelete
  4. What a story. I can now understand why you would not talk about your delivery candidly. Wow, you look so happy in your pictures. It must be a wonderful feeling to have a healthy strong little girl now. Way to go mommy. Your blog is a perfect example of what blogging should be about.

    ReplyDelete
  5. wow, thank you! It means SO much to me to get a comment like this :)

    ReplyDelete
  6. Truly beautifully written - as always, Chloe. Such a heart-wrenching story, and one no-one could have ever guessed from looking at you all now. Totally agree with the comment above - your writing is exactly what a blog should be like. I can only hope to one day have a blog as interesting.
    :)

    ReplyDelete
  7. Thank you Sophia! so so much xx

    ReplyDelete