When Things Go Wrong


1st Operation

So we took her to Birmingham, she was so good in the car on the way down. No mither at all. We saw Dr Wright, and spent ages and ages scanning her. Then he went away to consult his colleagues. It took him a little while to make up his mind, that was when he told us he would need to operate ASAP, and that she would need to be admitted there and then. I freaked, I paniced, I told him no way, I had only the clothes we were all standing in, we had no preparation made for the boys at home. We had to promise we would take her back the next day. He did suggest leaving her there and then we come back to her. No way to that one, I just couldn’t leave her.

So on the way home I was in floods of silent tears in the back of the car with her, just holding her hand and thinking how small she was, she was just 7lb something then, wet through. We arranged everything for the boys and then off we went. It was a sad journey, I can’t remember if it was hot or cold, sunny or cloudy, I have no idea.

When she was 1st admitted we were in a shared ward, they told me then that Carl would have to go home and only one of us could stay, I was heart broken, there was no way I could deal with this on my own. So at around 6ish Carl got ready to go, I tried to hold back the tears so he wouldn’t get upset too. I didn’t manage it very well. I knew I was going through my baby blues at the same time. I stayed by her side all the while, I fed her changed her, and struggled to cuddle her cus she was on a SATs machine and even though it was only one wire it felt like such a huge thing at the time, like a massive barrier between me and my baby.

The Cardiac liason nurse came too me a little later on, they had managed to sort out emergency accomodation for me. I felt gutted cus I had already sent Carl home and now we had a chance to be together and he wasn’t there. I stayed by her side, I could feel myself getting so tired, it was only 8 days after giving birth, I was still getting over that, I was still bleeding heavily.

The sister came to me and told me to go for a lie down, to gather my strength for tomorrow cus thats when Holly would need me most, and she would need me strong. It broke my heart to go, every step I took away from her just tore my heart out, I felt so much like I was leaving her to her own devises, I was abandoning her to fend for herself.

I went to the room at 8pm, I didn’t wake up until 6 in the morning, I woke up in such a panic, it was pitch black in the room, I jumped off the bed and practically ran upstairs to Holly. She was fine, she had slept like a dream. They all commented on how good she was. She had had nil by mouth since 3 and was ready for the op by 9, Carl just about made it in time. It was such a relief to see him there. I carried her to theatre, tears streaming down my face, I tried my best to hold them back, but they were there with too much force. I place her on the HUGE bed, she looked so lost and so tiny. The docs in charge told me they would look after her for me and to give her a kiss for now. I took her dummy with me and kept it in my pocket, so I could give it to her when she needed it next.

The hardest part now was to go out and act normal, we had to get some food. We needed the strength and the energy, it was going to be a long day.

We were soon back at the hospital, 2 hours of sheer pain went by. Then as we were pacing the corridor a bed was beeing wheeled down with a tiny bundle of cloth on it. My heart stopped, it was Holly, I knew it. There she was so so tiny, it seemed that she had shrunk and seemed so frail. Back on the ward we left the nurses to sorting her out before we went to her. She was wired up to loads of monitors, and had blood all over her neck where that had put in a central line, just incase they needed it. She looked a mess, bits of dried blood everywhere, but she seemed peaceful.

She kept on waking, but we couldn’t feed her for at least 6 more hours. All we could do was keep putting her dummy in. She wasn’t in the HDU for long, 5 hours and she was back in the main ward. Wasn’t long after that we were able to give her her 1st feed, and she wolfed it down. She was OK. It was such a relief. We bathed her later we had to remove the plasters from her groin, she looked so sore, she had holes all over, in the back of her hands, the tops of her feet, each groin and in her neck, she still had the lines in and the canula(sp) but we managed to get the plasters off.

Amazingly the next day she was allowed home, they were really pleased she was so tough. The next few weeks went smoothly, we were just getting things sorted with the new milk, and portable oxygen units and getting the DLA forms ready

Things were going really well, when she was nearly 9 weeks old we had a letter, they wanted to repeat the operation.

It was amazing how quickly 7 weeks goes, especially when there is something unpleasant at the end. Life was good, we were all settling into a routine, the boys had gotten used to their baby sister, I was nice and settled at college. I was really enjoying myself and was looking forward to going back after the operation. I let all my tutors know that I wouldn’t be in for a week, that gave me the 3 days down there and the rest of the week to settle back into routine. We had packed up our stuff, this time we were going to push for Carl to stay even if we were on the ward. The boys were settled at Carls mum and dads, even the dog went to stay with them.

So off we went. We weren’t as scared as last time, she did really well the 1st time, we didn’t have anything really to worry about. She was admitted to the ward, and we got a private room so we could both stay with her. At this point we realised we had forgotten her teddy “Lucky”, but nevermind, everything will be OK. We phoned everyone to let them know we were settled in OK. She was schedualed to go in at 9.45am the following morning.

Morning soon come around, Dr Wright came in for us to sign the consent forms, he mentioned that he wanted to try something elsem and if successful it would be more beneficial to Holly long term, the only thing was they had never performed the procedure on a baby Holly’s size. We had to trust what he was saying, he put the percentage of risk down as 1%, so we felt reasured by that, and then it was time. I carried her into theatre again this time I didn’t cry. I felt quite proud of myself. Again I put her dummy in my pocket as a good luck charm, just like I did last time. we went to the same place again for something to eat.

The 2 hour mark come, we went back to the ward, and had a cup of tea, tried to read a bit and tried to watch a bit of telly, by 3 hours I was getting aggitated. I had the constant thought of “Fight Holly Fight”, I had no idea where it came from. It just kept on repeating around my head over and over again. I said to Carl there was something wrong. I had to find out what was happening. It was 3 and a half hours after she had gone in and I went to see the nurse on the desk. I asked her to find out what was going on. She told me Dr Wright had contacted them and he was coming to see us. My heart dropped, I barely held back the tears. I practically ran to Carl, and told him Dr Wright was coming, there has to be something wrong. I felt so tense, and then all of a sudden I relaxed. I can’t say what it was but a calm just came over me.

Dr Wright came in a few mins later, He looked gutted, I was waiting for him to say she was dead, I don’t know what Carl was thinking at that time, but I guess it was the same. He told us there had been a complication. The stent had slipped piercing the heart causing a tiny tear, because of this it sent her heart into arrest and the had to perform cardiac massage for 35 mins, My head was swimming at this time, I am suprised at how much I remeber of the conversation even though all I could think was “is she dead??” He went on to tell us they were able to maintain blood pressure and kept her oxygen levels up, she was critical but stable, she was to be taken back into theatre to repair the damage. He couldn’t give us an answer on how long. He looked so upset about it, I couldn’t help but forgive him for it. I know I should have been angry at him, I know I should have been screaming with rage. But I said, these things happen, we are only human. He looked at us with such puzzled sorrow, and then he left.

A nurse came in to check on us, we were both in tears, we were so afraid for our darling little girl, why her??? why us??? She suggested that we go and have a look in the ICU, cus thats where she will be going once she comes out of theatre. We blindly followed. Once I stepped in my heart broke. All the machines, all the wires. My little baby was going to be going in there.

Another 4 hours of wandering around trapped in a nightmare of regret, guilt, sorrow and pity. Then we got the call. It was just after 6 in the evening, she went into theatre at 9.45 and we didn’t see her until after 6. She was hardly recognisable, I knew she was my baby, but she was fully ventilated, she still had the plasters over her eyes, there were tubes and wires coming from everywhere, blood soaked bandages and plasters.

Poorly Holly. 9 weeks old
We just sat down and waited, waited for a chance to see her, to kiss her or hold her hand, Just to touch her to make sure she was still warm. We had a crowd of Dr’s, registrars, consultants everything around us, all talking about what had happened, all of them mentioning brain damage. They did a quick scan while we were there, there was no signs of a bleed anywhere so it looked hopeful.

By 9 we were shattered, we were practically bullied into leaving, we reluctantly dragged ourselves away, promising to be back early in the morning.

We went up to the ward, we had no where else to go, the nusres came in to check on us to make sure we were OK and did we need anything. We made the beds and tried to watch Lost, I still can’t remember which episode it was, I have tried and tried to think which one. We eventually dropped off, I went 1st, Carl lasted much longer but soon he was asleep too.

Then in the middle of the night there was a knock on the door, quickly followed by a nurse. These words are engraved in my memory so hard I don’t think they will ever go away. ” You need to go down to ICU quick, Holly isn’t doing to well” I have never dressed or ran so quickly in my life. We were met at the doors in ICU by a nurse named Kate. She kept talking to us but I can’t remember hearing any of it. I just wanted to get to her. Nothing could have prepared us for the sight that met us.

When we turned the corner, Hollys cot was surrounded by every nurse in the place, there was a surgeon there with her chest open. Her heart had stopped suddenly, with everything she had gone through her heart was so swollen, that when they tried to stitch the skin over it it didn’t have enough room to function properly causeing her to go into arrest. I felt as though I was underwater, every movement was slow, all the sounds were muffled, I couldn’t make out what anyone was saying to me. I sat and watched as the surgeon finished up, and numbly listened to Kate tell us that she was OK for now, and that she was still very poorly.

I went to Holly and held her hand. She looked so tired. I turned to Kate and said that, I told her that Holly was fed up too, she didn’t want any more messing about. I turned to Holly and told her that if she wanted to, she could go. Mummy would miss her terribly but if she was tired and fed up, it was OK, she could go and get her angel wings. I remember answering yes to someone and then they brought me a cup of tea, that must have been what the question was. We sat and watched the monitors, we waited to see if there would be any other “blips”. It was getting on, we were encouraged to try and get some sleep. Again we reluctantly went, we saw the logic of what they were saying. She would need us strong, our family would need us strong. So thats what we did.

We went back to the ward, as we went in the nurses on duty came and asked how Holly was now, they were relieved to hear she had stabilised a little. They were really sweet, especially as we were still on the ward even though Holly wasn’t there, we were taking up valuable space, but we were never rushed out.

After a few hours sleep we went back to Holly, we met her Nurse for the day. His name was Mark. He was fantastic, he was so reasuring, he explained everything to us about the monitors, what the measured what the readings mean, he encouraged us to do her cares, like cleaning her eyes and putting vasalene on her lips. We would warn us that there would be a change in the readings if he had to do something with the meds, or if he had to do something different. He made us able to smile and thats one thing I really appreciate Mark for. Most of all though was the way he cared for Holly. He was so thorough, and so caring about her, it was almost as though he was treating her like he would his own. I knew she was safe with him, although I felt jealous that he was able to look after her better than me.

The next few days she was still critical, there was talk of them attempting to seal up the chest again, the longer they left it open she more at risk of getting an infection. The cardiac liason nurse asked us if we needed anything, I asked her if she could sort out accomodation for us. I felt guilty to be still on the ward, taking up bed space. Plus it was breaking my heart everytime I heard a baby cry in the background, it hurt me to see Holly’s things dotted about the room too. Thats when we went to the Edward House.

We got in Birmingham on the Tuesday, she had the op on wednesday, thursday and friday flew by, we were so busy in moving our bits and bobs down to the edward house, nipping in and out seeing Holly, in and out making phonecalls to everyone, keeping them up to date. I was thankful we were on a contract phone otherwise it would have cost a fortune (the bill was over £100). Friday we discussed what to do with the boys, we decided to bring them down to see Holly and spend some time with us, we needed to be with them to cheer us up.

The Saturday morning before picking the boys up, we were woken up by the phone ringing. We both leapt out of bed, dread in our hearts, fear in our belly’s. We obviously thought the worst. I can’t even remember who answered the phone. All I knew was she had started to have fits. We rushed up to her, it was cold and it was still dark.

They explained to us about the fits, her eyes would roll and she would start to twitch, she had done it a few times that night. She was doing it so often that they had to keep a tick sheet of how often and how long they were lasting. They were only 45 seconds to a minute long, but to me it felt like forever.

The started her on Phenobarbitol to control the fits and arranged an EEG. The EEG was clear, and even though she was out of it she showed response to my voice and my touch.

Carl was deeply affected by it all and found it really difficult to come away, I had switched onto auto pilot and managed to be the strength that carried us through. I was the one to get on the train and fetch the boys, pack some fresh clothes and get the train back. It was the longest 4 hours of my life. But possible one of the most rewarding. I really loved having the boys with us.

The 1st thing the boys asked me was “is she dead??” it broke my heart. I showed them a picture of her all wired up, so as not to scare them too much. I explained she was very poorly and needed lots of medicines to make her better, if they wanted to know anything, to just ask.

Before going back I remembered Lucky, I should never have forgotten him. It was so silly of me to put all my faith and hope into a teddy, but it worked for me. Once I had lucky I felt better. I felt stronger.

When the boys were staying, me and Carl took it in turns to go and see Holly, and we took them up in the moring to say hello and last thing at night to say goodnight. They were really well behaved for 2 young boys, I was really proud of them. Robbie asked endless questions and amazed the nurses by repeating everything back to them the following day (he was only 6 at the time). On one of my alone visits I witnessed my first fit. Her eyes were rolling and her left arm would twitch quite forcefully. It lasted about 30 seconds, but seemed like a whole lifetime to me.

The following week she improved with leaps and bounds. She had regular physio, it looked as though the left side had collapsed a little. So they X-rayed everyday and put her on anti-biotics to keep infection at bay. They eventually closed her chest, and she tolerated it well. They took her off the ventilator and put her on the Cpap, she wasn’t happy about that and it wasn’t too long until she just had the box over her head. They took the catheta out, but she didn’t wee for ages, so they had to put it back in. for that week the days just merged into one long one, everyday seemed the same although she was improving hugely.

Friday came and they said that she could be well enough to go to the ward. We were amazed, just as much as they were. We didn’t find out until later but they didn’t expect her to pull through. We had to go and pick up the boys, and I managed to drag Carl with me this time, We told them to ring us as soon as they know anything. Just as we were getting onto the train to come back my phone rang, it was a happy moment. She was back on the ward in the High Dependency unit, but still back on the ward.

She was in the HDU for just over a day. The boys were a little bit more used to being in hospital and were starting to get silly. She was still very tired and was still fed by tube on continuous feeds. They had really got my hopes up one morning. The nurse had said I could bath her. I hadn’t held her properly since before the op. I had held her breifly in ICU but she was screaming, I was afraid I was hurting her. It broke my heart. I felt like she was angry at me too. As she was coming more too she would only let dad comfort her and not me.

Anyway, I was really looking forward to being tactile with her and wanted to feel her in my arms. Then the silly cow told me they couldn’t do it, cus she still had pacing wires in (like an external pacemaker) I was gutted. I managed to hold back the tears, and consoled myself by top and tailing her and getting her some clean clothes on. It was still difficult to cuddle her. Although there were a lot less wires and tubes, they still felt like a huge wall between us. It felt too high for me to climb over.

I went back to Carl so he could have his turn with her. As soon as I saw him I broke my heart and told him about me getting my hopes up. He gave me a cuddle and I felt much better. He has been my rock all through this. I could never have done it without him. Although there were many sad and scary moments we still found a little spirit in ourselves to laugh, and make fun of the nurses that looked after Holly. That in turn made them relax and make fun with us too.

We took the boys out and around the city, we took them for a KFC, for the 1st time ever. Our nearest one was 1/2 an hour away. We spent some lovely quality time with the boys, but still we felt guilty for leaving Holly on her own.

We went back to the ward and she wasn’t in the HDU. Again I paniced, I wondered if she had relapsed and had to go back into ICU. Worriedly I asked where Holly was and with such huge relief she had been moved onto the main ward. Just across from the desk though but again to us it was another huge hurdle she had passed.

They wanted Holly to start feeding by herself. We kept on trying and trying, she just wasn’t strong enough. To us it was the last battle to allow us home. It would take her over an hour to have just a few ounces. I feel now that the nurses were wrong to push her that way. But she took her feeds eventually. Tuesday Dr Wright came to see us. You could see he was on edge and was nervous around us. We hadn’t mentioned to anyone about complaints, or suing although every member of our families wanted us to do it.

He asked us if we wanted to know anything. We had agreed before hand that at that moment in time it wasn’t important about what went wrong, it was time to focus on what went right and how to move on. So we told him that. You could see the relief flood into him. You could see the tension just slip away. He opened up to us, he told us about where we are going, and what to expect. Everytime I looked into his eyes I could see the sorrow for what he had done. Nothing I could have said to this man could have made him feel any worse.

Wednesday at 10am we were told we could go home. They took out her NG tube, removed the canular(sp) and went away to sort out the paperwork. Carl went home on the train to fetch the car. 17.00 and we were still there. There had been problems with the prescription, cus she was on weaning doses of Phenobarbitol and it being a registered drug, there had to be loads of signatures and they had to make sure we knew what we were doing with it. At 17.45 we were on our way home. We didn’t tell anyone to expect us, we just suprised the boys by turning up.

It was a wonderful family reunion. That was one of the best days of my life. I had never been so happy to have my family together sat surrounded by dirty washing, from just dumping stuff and picking up clean and off again. I didn’t care about any of it. I was home, Carl was home, the boys were home and most of all Holly was home. We had so much to do, we had 3 weeks until christmas and we hadn’t got a thing for anyone.

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12 comments

  1. What an amazingly strong woman you are Helen. I just been in floods of tears reading this even though i knew Holly made it through! I know everyone is really proud of everything Holly achieves but i know given time all your children will be proud of you! x

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    1. Awww thanks Wendy.

      We are all so proud of her and how far she has come without realising just how far we ourselves have come. Only by reading back through old memories does it hit home just how life moves on

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  2. Helen I am in floods of tears! I don’t know you personally, but know Holly made it through the struggles, but it didn’t stop me wanting to get to the end just to make sure. You have written it so beautifully. I cant begin to imagine what it must feel like to have been put through it, but thanks to this I feel like I have just a tiny bit of insight into what it must feel like to have a child that is critically poorly and not know if they will pull through it.
    I will be keeping a close eye on your blog, you have a brilliant way with words.xx

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  3. I cried buckets reading this post. I am so so very glad your precious little baby pulled through. What an ordeal. And how strong you have all been through this.

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  4. I have cried so much reading this. Such a beautiful post. Your little girl is one strong little fighter! You really are an inspiration, so strong to keep going through something so awful. xxxx

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    1. Yes it certainly was an odd reaction I suppose. I think the main part was that although she was in a bad way she was safe. That was the only thing that I was concerned about.

      I have moments of anger now, years down the line, I dont know if its the scar tissue from then that has made her heart not repairable now. But for the most part I still feel relief and forgiveness. The surgeon has now moved to Australia, so he wont be touching her again 😉 that might have a little something to do with it.

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  5. That wasn’t easy to read and it certainly can’t have been easy to write. You went through every parent’s nightmare and came through it with your family intact. Reading it makes me so grateful that we have not had to go through a trauma like this. Thank you for sharing your story. Best wishes to you and your family.

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  6. Thank you so much for sharing this in the Love Mummy Blogs Showcase last week 🙂 We only see the day to day posts usually, so it is eye-opening to go back to earlier posts and learn more about the bloggers we thought we knew. I’m glad to know you a little better now x

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  7. I have been on your blog once or twice before but has no idea you had went through this. I am so glad to read that Holly came through it all. Thank you for sharing this and reminding me once again how precious our family’s health is.

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