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Post by Rilith on May 6, 2006 7:58:41 GMT
Part 1 - The Pregnancy To think and express everything I have felt since the moment I found out I was PG and the events that have followed, It will prolly take a while, so I will have to do it by installments I think. I'll start from the moment I felt broody. We had got the 2 boys, we had always said 2 is enough and we won't have anymore. I just felt my clock was ticking. I asked Carl to think about it, but if he said no that wouldn't be a problem cus its got to be something we are in agreement on. It took him a few days to ponder it, but he came back to me and said yes. One more won't make that much difference. So I didn't go for my injection and my AF came a few months later. By the 3rd AF was due I was pregnant. I knew pretty much straight away, and Carl did too, he has never been wrong, he has always known. I got a different feeling about the PG this time though. I had this odd feeling it was going to be twins. I just knew that something was going to make it harder work than the boys. I can't put my finger on what made me feel that was, it was just something I knew. I hadn't thought of anything to do with disability, why should I??? there has never been anything in either family, so it never crossed my mind. We arranged the ante-natal appointments, then there was the dating scan. The sonographer quickly did the dating, which was 10+3 weeks and then started to take a little bit more time, scanning and measuring, scanning and measuring, even then I didn't think anything was wrong, I just made sure there was only one in there. She made me a follow up apointment for the following week, she muttered something about she couldn't get a measurement on something. On the way back to the car, I said to carl, they must be hecking for the nuchal fold, it was something new, a new way to detect Downs. That was the end of it. We went back the following week, when we went to book in, the nurse behind the desk, said "oh you are booked in to have a scan with the consultant". Well I have never seen a consultant with any of the other pregnancies, so little alarm bells started to ring. So again, they measured and scanned, measured and scanned and measured and scanned. Then they told us that baby had a large nuchal fold measurment. They listed what it could possibly indicate, things like Downs, Turners Syndrome and heart defects. The offered a CVS straight away, and could arrange and appointment in Birmingham for the following day, or I could wait until 16 weeks for an amnio. We chose to wait until 16 weeks. I spent the 5 weeks looking and researching as much as I could about all 3 possible things, while I was at it I found more and more things. It opened my eyes to a whole wide range of what could be wrong. My measurement wasn't even that large, it was only 4mm. It was odd, cus VB was going through the same thing at the same time, she had made up her mind, just as I had and I totally respected her honesty and felt such empathy towards her. As soon as she got her all clear result, thats when I knew. I knew in my heart of hearts that my results would come back positive with something. But I wasn't scared. I wasn't afraid. I knew that me and Carl would be OK. I got the phone call, she said, I'm sorry its not the result we were hoping for. All I could ask was, is it only T21? She said yes with a puzzled sound to her voice, and I sighed with relief, well thats OK then. I had found out so many things that were far worse than Downs, that Downs would be the easiest problem to deal with. An appointment was arranged so they could give us "our options", obviously the 1st thing I said was, we are keeping the baby. The information they gave us was pretty poor really, I had found out more myself. Then we had the great fun of breaking the news to our families. My family were supportive in their words, they were pleased we would be keeping the baby. They were proud of us for doing so. Carls family were harder, His brother and sister took it really well, but his mum and dad just went over the top. They wanted us to terminate the pregnancy, they didn't want to have a "mongol" in the family. The boys would be picked on and it would be a huge embarressment to everyone. If we kept the baby they would move away. It really didn't help Carl at all, he really needed the support of his family at this time, but didn't get it. A week or so later we had the full results through, and we also had a request to see the geneticist, they had found something and would like us to have blood tests. When we went to collect our results, they had found a translocation of the 13th and 14th chromosome, in Carls DNA, they had noticed the same thing in babys results and that was what alerted them. This transolcation actually made us high risk for pataus syndrome (T13) we should have been high risk for many miscarriages, if we did manage to carry to term, the baby could die within the 1st month of its life. This was something that made me thankful that again it was "only Downs". They wanted to have Carl's parents tested, just to see if the translocation was in them, we think it was, because they did have lots of miscarriages, thats why they adopted Carls brother and sister, Carl come along much later as a huge suprise. We did mention it to Carls mum and she broke down and cried. I think it was a small peice of closure, she knew now why she lost babies. But she didn't want to be tested. We have said we will let the boys be tested when they are older, just so they can prepare themselves. Just in case.
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Post by Rilith on May 6, 2006 7:59:36 GMT
In the meantime, I was still trawling the net to find out as much as I could about Downs. My anomoly scan was coming up, and I had already found out a percentage of babies with Downs had congenital heart defects. They did all the measurements and then spent a good bit of time on the heart. Both me and Carl were holding our breaths, we looked at eachother, I we read in eachothers eyes, we knew there was a problem. Thats when we we transfered to Birminghams care. The later part of the PG was endless trips up and down to brum. We were told the 1st time we went, baby had AVSD, so again, I looked it up on the net. OK it can be repaired. The next time we went, it was an exstensive AVSD. the 4th time we went, thats when they told us about the tetralogy of Fallots. This was the point I started to get scared. I saw a teddy with a 4 leaf clover on, and I had to buy it for the baby. Every other appointment we went to "Lucky" came with us. When we took him we got good news, when we forgot him, we would get bad news. He was babies good luck charm and still is. I had my off days where I wondered if I was doing the right thing, or was I being selfish. I felt guilty too, I had terminated 2 healthy PG's. So was I being punished for that. Or was I being tested to see if I would go through it again?? But then I had more positive days. I was hopeful that things would work out OK. I wasn't under any illusions that they could be wrong. I had already known there was something different, something more difficult. We went for regular growth scans, it was nice to see baby regular, we only ever had the 2 scans with each of the boys. We still didn't know the flavour. We had said we already know so much about baby, we would like at least one suprise. We went for what would be the final growth scan, she seemed to have stopped growing. Thats when they mentioned a c-section. I flat refused that, my birth plan was already ruined cus I wanted a home birth again. I knew I would be strapped up to monitors cus of them wanting to keep an eye on babys heart rate. So I agreed to an induction, 3 weeks early. We only had a few days to get everything ready. We had a look around the neo natal area, cus there was a possibility depending upon the condition baby was born in, where baby would be taken straigh down to the neo natal area. All I worried about was would they let me have a cuddle before they took baby away. We went home and got the bags ready, one for me and one for the baby. We sorted the boys out so they could stop at their grandparents. It didn't take long for D-day to come
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Post by Rilith on May 6, 2006 8:00:04 GMT
Part 2 - The Birth In the morning I woke up, I was full of nerves. Today was the day I would finally be meeting the baby I knew so much about. I was frightened, I was scared about whether or not I would love the baby straight away, what if I couldn't bond?? what if the baby was deformed?? The thoughts I had running through me head just made me not want to go for the induction. We dropped the boys off and I gave them huge kisses and cuddles. We had been honest with them all the way through the PG about baby, they knew the baby had got downs although they didn't know what it meant, and they knew baby had a poorly heart so that could mean mummy might be in hospital for a little bit longer after baby was born. We arrived and they inserted the pessary, my mind was still in termoil as to what was going to happen. Although I knew the characteristics of downs, I still didn't know what to expect, I was afraid, I was very very afraid. The labour progressed. We were watching the monitor for any little blips with her heart, and it dropped right down twice during labour, they said baby was prolly gripping the cord and nothing to worry about. Then there was the birth, I am so glad I had had other births before, because when they all come in in a panic I knew I had to stay focused. When she was born, she was so blue, they took her straight over and started to pat and rub, and gave her O2. Those few mins seemed to take forever, I'm sure my heart didn't beat once while I was waiting. Already she was my little girl and all my worries about if I would love her or not had gone, just cus of those few moments when I thought she could be taken away from me forever. Then she cried, My body flooded with relief, they finally wrapped her up and handed her to us. Immediately we looked for all the signs of downs, and we found them all. but underneath the Downs we saw her brothers in her, she was beautiful. I loved he so much. The next 5 days in the hospital dragged, I hate hospitals so much. She had check after check, echo after echo. I just wanted to take her home. I was in the ward with all the other women, I watched them come and go. One lady come in aftera c-sec and was such a drama queen, she wanted to go out for a smoke only hours after having the c-sec. One baby was nearly 10lb, one had a huge mop of hair. All of them were "normal", I felt really alone, I didn't feel ashamed of Holly, but I did feel isolated by it at first, I just got on with looking after her. She fed quite well and slept even better. Then some of the other ladies came over for a chat, and thats when the subject arose. Again I feel so thankful I knew before hand. Keeping her was our choice, she wasn't forced upon us to deal with like it happens with so many othe babies. We chose to keep her no matter what. We finally got to go home, emotionally I think thats where the problems started. Carls dad still wouldn't acknowledge the Downs, he couldn't see it in her, but to us is was so obvious. So may people came to see her, I know deep down they cared, but it still felt like people wanted to come and see the freak show. I know these feelings were normal, but it still isn't nice to feel that people are only comeing to see you and you baby just cus she is different. It was the same when we first took her to school, because we told a few of the mums, just so they could spread the word to save us having to explain all the time, we were mobbed by everyone, again all wanting to see the freak show. It made me all the more protective of her so maybe thats where it all started. Maybe thats where my separation anxiety problems started???. After 5 days in hospital and only 3 days at home, it was time for her 1st appointment in brum. A few Hours Old
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Post by Rilith on May 6, 2006 12:10:22 GMT
Part 3 - 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.
Part 4 the big boo boo, Next installation
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Post by Rilith on May 6, 2006 18:21:27 GMT
Part 4, The Next 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. 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. (need a break now) We took this picture thinking it might be the last one we would ever take. Now its a reminder to just how far she has come
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Post by Rilith on May 6, 2006 21:48:28 GMT
Part 5, ICU
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.
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.
We were quite upset with Carls mum and dad, cus we had always been honest with the boys about everything, we expected them to be honest about Holly, but when I went to collect them, the 1st thing the boys asked 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. His Mum and dad didn't mention anything to the school until we found out 2 weeks later that they hadn't said anything. I spose thats how they used to deal with things in the olden days.
The weekend with the boys was stressful but fantastic at the same time, It was sad to take them home, I promised I would be there on friday after school to take them back down with me again.
Then it was back to Holly.
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Post by Rilith on May 7, 2006 12:48:47 GMT
Part 6, ICU Continued
Before going home 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.
Just to go back to 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. Ithey 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.
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.
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Post by Rilith on May 7, 2006 14:13:04 GMT
Part 7. 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 hope us 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. Home in Time for Christmas
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Post by Rilith on May 9, 2006 21:34:58 GMT
Part 8, Home The first week home was hard. I was terrified of hurting her, she seemed so tiny and frail. I was constantly checking the scar and worried about knocking the scabs when I dressed her. I was afraid to bath her at first and would only top and tail her. She was so sleepy, part of it was the Phenobarbital, it was like having a newborn again except she seemed smaller and more fragile. She was still lighter that what the boys were when they were born. We had to rearrange Stevies operation for his grommets, there was no way I was ready to take him in for an operation. It was way too soon and too fresh in his mind of what Holly looked like after her operation. I didn't want to worry him about it at all. It was just a matter of waiting now, with canceling it put us to the bottom of the list. Carl being cheeky though asked Holly's Paed to ask his colleague for a favour and try to squeeze us in. Back home we had to slowly reduce the dosage of the Phenobarbital, which wasn't fun. The more she was coming off it the more cranky she got. I looked up the side effects on the net, my poor little lamb was having withdrawal symptoms from it. There was a huge list of withdrawals. Feeding was really difficult too. She really didn't have the energy for a long feed, so we had to drop it to each hour just so she could get enough. But it wasn't enough for her weight. She started to lose some. The neo-natal Nurse Sarah, she gave us a few more days to see how she was doing, if there was no weight gain she would put an NG tube in. We really didn't want this to happen. To us it felt like a huge step back in her recovery. To us it felt like we were failing her, we just couldn't do enough for her. The next few days we really felt the pressure. Food, Food, Food. That was all that was on our minds. We just so wanted her to feed, we got so frustrated. I wanted to cry at times but I was so afraid that if I started I wouldn't be able to stop. Sarah came back a few days later to weigh her. She had lost some more weight. We agreed for the best to put in the tube. She started off with a temporary one, it could only stay in for 10 days. That was OK, in that time I could get her stronger so she wouldn't need it. A few days later she started with a sniffle. That sniffled turned into a full cold in no time. It really knocked her for six. The little bit she was feeding she didn't do anymore. She was rarely awake, and when she was she was very docile and not at all responsive. We worried like mad. We took her to see the GP, we said just for reassurance is she OK?? They gave her a full check over, checked everything and she was fine. The doctor then asked if we were OK. We were fine, but could he set up some council ling for in the New Year. We will need it at some point. I contacted my tutor at college, and said I would be leaving it until the new term in January before coming back. Everything was still quite chaotic. The boys were playing us up, only because they were out of routine and were able to get away with murder while stopping with their grandparents. Discipline was totally out the window and bedtimes were a farce. We had to spend so much time cuddling and playing games with them, to give them the attention that they had missed and now wanted, but at the same time we had to be hard on them to get them back into routine. Those bits really hurt. All we wanted to do was spoil them, but it wouldn't have helped us out in the long run. We still had to get Christmas presents for the boys, we had to make sure someone could stop in with Holly while we went. It was a huge battle to get Carl’s mum to watch her, just for an hour while we rushed like mad to get back, just incase she needed feeding. Every time we went anywhere it was a mad rush. Although we were surrounded by people that cared and loved us we felt so alone, no one would help us. Holly's cold lasted all over Christmas, but we still managed to have a really great Christmas. We were just so thankful to be home, even if she did have the tube in. At some points we didn't see that we would be home. The boys were slowly getting back to normal, it was nearly time for them to go back to school, and nearly time for me to go back college. I was doing well with the tube feeds. Carl did the odd one or 2, but he felt really uncomfortable doing it. I only had about 12 feeding syringes, and we had to constantly re sterilise them all the time while we were waiting for homeward to get intough to leave us some more. They were getting really stiff now. One night in particular I was trying to fill the syringe with milk and it was so hard I was pulling with all my strength and then all of a sudden POP, milk was everywhere, I was covered. I felt so angry and pissed off, I wanted to slat everything up the walls and fly into a proper rage, but I had visitors. I had to hold it in. I had to wait until they were gone before I could let it out. As soon as they went that was it. The floodgates opened. The one thing I was afraid of happened. I knew once I cried I wouldn't be able to stop. It was every little thing. I would cry for the slightest of reasons. Monday soon come arround. I got my bag ready and my school work. I went to give Holly a hug to tell her to be good for her dad and I picked her up, and I couldn't put her down. I held her so tight. Tears were streaming down my face. How could I leave her, she still needed me, she was still poorly. It broke my heart to think of leaving her. It was only for a few hours. I wouldn’t necessarily be away for feeing time. I couldn’t go. I pleaded with Carl not to make me go. I cried after with relief of not leaving her.
While we were in Birmingham we made a pact.We argreed that if it was going to hit us then we would let it. We wouldn’t try to fight it or pretend it wasn’t there. We would face it head on. We would tackle it straight away and not let it fester.
So now here it is.
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Post by Rilith on May 13, 2006 22:26:56 GMT
Part 9, the Depression
I remember it hit like a ton of bricks. From being strong and keeping control to constantly crying over the slightest of things and feeling like every part of my life was slipping through my fingers.
I was afraid to leave the house, I was unmotivated to clean the house, even my personal hygiene went out of the window. I had never felt so useless in my life, I felt like a burden on my family and that they would probably do better without me. I never contemplated suicide, but I did try to plan how to get a new identity and just go, disappear.
Not only could I not face people in the flesh, I withdrew from Bounty. I didn't even have the confidence to talk to strangers online. I still spoke to some of the ladies I met in the same due month in our MSN group, but I couldn't face live chat with them on MSN. I only had enough in me to post on the discussion boards.
I started a diary, to keep a track of my thoughts and what kind of days I was having. I started medication and at first I felt so much worse. I found comfort in some of the other girls, cus they were going through similar too. Although it was a horrible thing to have, it was nice to be able to share.
I eveluated everything about myself. I tried to measure things like where on a scale of 1-10 would I be for my mohering skills, or on my wifely duties. I would put myself down terribly. I really started to detest who I was.
I used to get so angry at Holly, for just doing things that babies do, like crying, or spitting their food out. Sometimes I would get so angry I would want so badly to hurt her. I just had to walk out of the room and leave her to cry.
Gradually my moods started to level out a bit, I was still so afraid to meet people, but I was getting better. I wasn't so angry anymore. But that was when the guilt set in. I felt guilty about everything.
I felt guilty for not being able to show Carl how much I loved him, I felt guilty about being sad around my kiddies. It took a while but we eventually got to the root of the guilt. I felt tremendous guilt about saying my goodbyes to Holly. In my heart I felt as though I had given up on her, seeing how strong she was and what a fighter she is just heightened that guilt. How could I have given up on her??? From that point I tried to over compensate and had to do everything for her. I had to do all of her feeds, all of the night time needs. I wouldn't let anyone in, not even Carl.
This is what I am doing in therapy now. I am trying to learn how to let go a little. I am trying to learn that my guilt isn't a punishment. I am trying to learn I am not to blame for what went wrong. I wasn't to know it was going to happen. I was the one that signed the form, I carried her into theatre and I left her there. So in my mind it was my fault. I am trying to work on it, I know I will get there eventually.
5 months later and I am still wary when out. I have regular panic attacks still, and I can't stand people being too close to me. I can count on one hand how many times I have made Love to Carl in the last 5 months, and that really hurts me.
Family life is hard when you are depressed. Children still want to be praised for being good, and they still want to play. They still need clean clothes and a nice house to come home to, and a good meal to fill them up. You go through the motions of being a perfect mum, but deep down inside you are in termoil and no one knows.
I'm not proud of being depressed, but I'm not ashamed of it either. Its a part of my life I have got to work through. Its there for a reason. Once I come through it I will be stronger. Its just hard work trying to get to the otherside.
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Post by Rilith on May 17, 2006 4:42:43 GMT
Part 10, About Holly Holly was such a good baby from the start. She started off by feeding really well and only woke once in the night for a feed. She slept a lot during the day, but I was warned about that becasue of the heart defect, it would make her more tired. She was on SMA gold at first. She was putting weight on but very slowly, so the neonatal nurse Sarah, ordered some infatrini milk for her. She wouldn't need as much to fill her up, so she wouldn't need to use as much energy, and also it wouldn't fill her little tummy too much. Sarah had advised us to keep her well proped up after feeds, so the tummy wouldn't put additional pressure on her heart and lungs, so we went away and raised the end of her moses baskets. She tolerated the Infatrini really well, she was a little constipated at first, but a little cooled boiled water and she would be fine. It was really nice when she started to be awake a little more, she had the most gorgeous eyes, you could sink right into them. They were like deep pools and didn't seem to end. The one thing I did notice was she would never make eye contact with me, she would with Dad, but wouldn't with me. Her grandma noticed the same thing, she was definately a mans girl. She was a brilliant sleeper, from about 2 weeks old she would sleep through the night. She would go from midnight until 8 in the morning. She would only have her dummy to drop off to sleep and wouldn't need it for the rest of the night, even if she did wake up. We started to wait eagerly for a smile, she would stare at our faces for ages and we would try to do everything we could to get a smile, but there was nothing. She just wasn't ready. I sometimes got impatient, sometimes I worried that it might mean that she would be severly affected by the Downs and be really far behind. Then the operation happened and she went back to being like a newborn. She was very sleepy again. She slowly gained back her strength. She started to become very fascinated by her hand, she would stare at it for ages, and had such a look of wonder everytime it twitched or moved. She must have thought it was amazing. She reached 13 weeks old and we still hadn't had a smile, but now we could see her thinking about it. Then on Christmas morning, Myself, Carl and the boys, looked over the moses basket at her and cooed Merry Christmas, and were all generally being silly and she flashed a gorgeous smile. It was almost as though she was saving it for us all. She was 13+4 weeks old. I realised how much I took for granted when the boys were growing up, I must have missed so much of the excitement of it because there was no huge wait, there was no long anticipation. She didn't smile again for ages, she was 18+ weeks old before she started to smile regularly. She was becoming more and more aware of her surroundings. We would try and stimulate her by showing her toys and books. She loved someone singing to her and she was enthralled by her big brothers. She tried so hard to co-ordinate movement, and it would take her ages to reach out one hand to touch a toy. She would get so frustrated with herself. The Physiotherapist cam to visit us and showed up some techniques to improve her head control. At 16 weeks old we still had to support her head, she was abe to turn towards sounds and movement, but was very jerky with it. She was still quite floppy too, she really didn't have very good muscle tone. Obviously 3 weeks in intensive care didn't help her, what little muscle tone she had developed was wasted again. So we would try to get her to hold her head more, and support her less. She gradually got the hang of it and was doing really well. By the time the physio came again she was doing marvelously. She was still only a petite little thing. She was still in newborn nappies until she was 5 months old, it seemed to take forever to get her over the 10lb mark. It was strange to think that she was 4-5 months old and babies were born the same weight as what she was then. I tried to look at it in the way of, at least I got good use out of her newborn stuff not like the week the boys were in it. But it was still a worry, the more weight she put on the stronger she would be. We started her on a teeny bit of baby rice when she was 12 weeks old. Not so much for the weaning, but for the practice, to attempt to increase the muscle tone in her mouth ready for proper weaning. She did do really well and managed to move the food around her mouth lovely. We started to wean properly by 16 weeks, but she was a naughty girl and would only eat sweet stuff. She didn't like savoury at all. So I had to stop all sweet stuff for a little while until she was used to the savoury. Holly never had a big appitite, so we wouldn't get much in her tum, plus with her having the NG tube she got lazy. She had figured out that if she didn't suck her bottle we would put it down the tube, so she would just play with the teat in her mouth and let what milk that did go in her mouth dribble down her chin. We spoke with the dietitian about it and as long as we could get her eating her solids and drinking from a beaker then tubing the milk feed would be OK. The physio came again and showed us how to encourage her to sit, and advised us to get her to lean forward more to play with toys. It was quite difficult at the time, I was really suffering with depression then and I had a really bad back so sitting on the floor wasn't easy. I felt guilty that I wasn't doing it as often as I should so I took the plunge and got down there even if it did hurt, it was for Holly and the pain was worth it. During this time, she started to wake up in the middle of the night screaming in pain. She was bloated and full of wind. Her nose was running and she had an awful cough. She had one cold after another for what seemed like ages. It wasn't until a few weeks of sleepless nights I twigged on to what it was. She was reacting to gluten in her diet. I immediately stopped weetabix, and cereals, and waited to see if there was an improvement. Thankfully there was. But then it started again a week later. Thats when I had to stop yoghurts and cordial. She improved again over the week. Then all of a sudden it started again. This time it was calpol and tixylix. It took a total of 8 weeks to completely get it out of her system. Due to all her illnesses, she didn't have any of her immunisations when they were due. She was 6 months old when she had her first set, and we still have one more set to go. The second lot of imms were hard. We couldn't give her calpol to relieve the fever it just made her worse. We had to see the doctor who made a suggestion to us about normal paracetomol. We had to do it that way. She is nearly 8 months old now. She still needs loads of support while sitting, and she is back on gluten at the moment so we can have her tested for Coeliacs Disease. She has been through a lot in such a little time, but she is still so happy. She has recently started to giggle when you tickle her or kiss her neck and it was the sweetest sound in the world. Having a baby with special needs, makes you truly appreciate everything they do. Every milestone is a huge hurdle, a huge step closer to an indepentant life. Thats all I want for my special little girl. I just want her to be able to move out and have a home of her own. I would love for her to get a nice little job that she loves and be able to earn her own money. It would be great if she was able to get a boyfriend one day and want to get married. This brings me up to date now. I'm sure in time there will be more chapters to Holly's story. I hope you have enjoyed reading it. I hope for some of you out there it has helped to know that you are not alone, and the feelings you have are OK. Its a huge help for me to be able to share Holly's story. I am very very proud of my little girl, and love sharing her with you all. Getting Stronger and Stronger
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julie
Junior Member
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Post by julie on Sept 2, 2006 22:59:41 GMT
that story had me in tears i think u r truelly amasing with how u handled what your goin through i had my daughter wen i was 18 shes called lauren she had a hole in the heart wen she was born but thank god it closed at 6 months shes now 9 but got an attitude of a 19yr old lol i just cant imagen how u coped with the operations a couple of weeks ago lauren had 2 be put 2 sleep for the 1st time ever an it was only to have 9 teeth out but i was in bits absolutley histericle so cant even imagen wot u felt ,but ur doin great an holly is looky to have you as a mother shes beautiful
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Post by Rilith on Oct 5, 2006 12:36:23 GMT
6 Months On Its been a hard few months. Holly needed constant attention and feeding, I was always worried about one thing or another. At 6 months old she was still like a newborn baby, she struggled to get past 10lb, and again 11lb but she slowly started to gain weight. The tube became part of our daily lives. She still slept 18 hours out of the 24, and again this worried me terribly. I was worrying about her development and still scared about brain damage. I was still in therapy but was making huge improvements, I was able to function again and see people again. I wasn't so closed in anymore. Carl was finding things difficult and finally started to show the strains of trying to keep it all together for everyone. The more depressed he got the less he helped and the more I had to do, luckily I was ready at this point to carry the burden for a little while. I still have my days now where I want to shut out the world and just be left be. Holly's Feeding has been one of the hardest battles over the last 6 months. The tube feed was just too easy, the more we finished off her bottles this way the less she wanted to work for it, so we ended up at one point giving her all of her milk via the tube. We had started her on solids, again another battle, one day she would eat lovely, then for the next week wouldn't touch a thing. She hated home cooked foods and would only eat sweet stuff like yoghurts or ice cream. She would reluctantly eat the baby jars but just spent most of the time spitting it back out at me. Each weigh in we would see her gain weight so slowly, just 1oz here and 1oz there. But even a slow weight gain is a good weight gain. Slowly but surely she started to enjoy food more, we persevered in not giving her sweet stuff for a few weeks and stuck to the savoury and sure enough it paid off. That was until at 6 month and 1 week old we started her on weetabix. She was so poorly with belly ache, diarrhoea, colic, sticky eyes, runny nose and a bad cough. It took 8 weeks to get her over that. It just felt like it was always one thing after another. Didn't help that she was up all night screaming in pain. I ended up sleeping on the settee for the most part, just so as to not disturb everyone else. But that was just me trying to be super mum and needing to do everything for her myself. One day when she was around 8 months old, the frail little baby I had gotten used to disappeared and a new one woke up. She went from this sleepy, frail, worn out little thing into an alert, bright attentive darling sweetheart that would quickly flash a smile and wanted to play and stare at your face. She started to enjoy being on her belly more, and one day suprised us all by rolling over. She was so happy to show anyone her wonderful trick, and it wasn't long before she would roll all around the room to get to what she wanted. When ever we talk to anyone that knew how poorly she was, we always describe it asthough one day she woke up and said "I'm OK now, what can we play" and thats exactly how she has been for the last few months. She is so eager for everything. She found the hot summer difficult and really struggled with her heart in the heat. It seemed she was always on the O2 and she was getting quite ill. It was so hard to see her suffering, luckily she was due to go back to Birmingham soon. They had booked her in for an investigation. Finally We would be getting a battle plan as to what they were going to do for the repairs. When she got there she was still miserable and cranky, and after the catheterisation her SATs were dangerously low in the low 40s, so she had to be on constant O2. She had also developed a weak pulse in her leg so they needed to keep her in for an extra few days, until they realised she has had a weak pulse in the leg since the OP last time. They started her on Aspirin. It truely is the wonder drug of the millenium. She has been so much healthier since beng on it. We even went swimming not long ago and didn't need the O2 with us, once she was warm again her colour was back to normal. I am so proud of my little girl. She has had to endure so much in this last year. She has had to work so hard to get to where she is now. And I am afraid that we have got to set her back yet again when she goes for the repair. I know in my heart of hearts that she will make a great recovery from it, but it doesn't stop me from being selfish and just wanting to keep her as she is now. Therapy has finished now. I feel a little scared and alone, not sure of where to turn to for support or where to go for help. But I will find out now, I know its for the best to get a good support network there.
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Post by Rilith on Oct 25, 2006 14:11:55 GMT
One Year Old Even now Holly is 1 year old I still look at her and tick all the boxes that show she is Downs. Its not like its ever going to go away, or maybe it’s a reminder to myself that she does indeed have downs and it keeps me rooted to the here and now. Sometimes when I look ate her, although my heart floods with overflowing love for her, I still get the “oh My God it happened to me” I look at my husband and I think “Our baby has Downs Syndrome” as though it’s a new realisation. Maybe that’s just me coming out of the huge black cloud that I have been in with the depression. Its funny because some days I don’t even think about it or notice it and then other days it is just so obvious. I love to sit and watch her play, I can’t help but make note of the fact she is still quite clumsy with her fingers and she doesn’t always grasp what she is trying to reach for. But she never seems to worry about it, she will turn around and look at me and her Dad with her bright sparkling eyes and a big smile that says “Look at me and how clever I am” She always manages to get it even if it is very heavy handed. My main worry is the heart still. Its not nice to go to an appointment and be told there is too much going on in there to do any operation. It scares me. I get so frightened that they will cause more damage by waiting. I am frightened of the winter and how it will affect her in the cold. I seem to be in constant fear of anything going wrong. Maybe it’s the time of year. Its almost one year since the operation. I suppose it’s the looking back that hurts more than anything. While you go through it and even though I put down my thoughts the reality of it hadn’t hit me. Now I look back at the pictures of just how small and frail she was the realisation of just how close we came to visiting her grave instead of bringing her home hits me like a tonne of bricks. Its amazing what you get used to in life, it no longer bothers me that people down at school come to make a fuss of the “Downs baby” or that they still mutter to themselves and point out to new parents “that’s them with the Downs baby” or that we get sympathetic looks at shopping. She is my baby and I love her no matter what. Having Holly has taught me so much about cherishing every moment. She has also shown me the guilt of not savouring each step with her brothers. When they were babies it was all so matter of factly that they would reach their milestones, and took each one for granted. Now Holly’s milestones each mean so much to everyone. Each step is a huge achievement, not only for Holly, but for the whole family. Its amazing how used you get to the meds, the syringes, the oxygen, and the million appointments to see the dietician, physio, speech, paeds, doctors, cardiologists, social workers, portage and all the rest that you see once or twice a year. Its wonderful to know there are so many people there to help. Not only are they there for Holly, they always seem to be there to help us too. To help motivate us when we are down, to help us find that little bit more of ourselves to give to Holly. She amazes everyone all the time with just how well she is doing. Most of all though she amazes us. Getting a big Girl now
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Post by shirley on Dec 28, 2006 22:34:10 GMT
Hi Rilith,
Just read your story, you and your family have came through so much with Holly you are an inspiration. You have given me great hope for the future op that Grace will have.
I hope you are feeling better now yourself also as sometimes because our little ones are poorly we forget about ourselves,
Take care Shirley,Stephen and baby Grace xxx
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Post by pinkshell1110 on Dec 29, 2006 0:20:45 GMT
ril i have just read this for the first time you,carl and holly and the boys have been through so much, holly really is an inspiration she has fought so hard and yet like my little man always seems to be smiling, all of the feelings you talk about are virtually the same as mine .While charlie was in GOSH most of the heart babies had D.S and when they were out of icu and on the wards they were always smiling and happy.Like you i can honestly say that i am so proud of charlie and how he has come through everything.These babes have been through so much and they deserve to be happy and healthy.lots of good luck to all of you with everything and loads n loads of hugs to you all, holly really is a special angel and she wouldn't be the babe she is without you,carl and the boys lots of love shell n charlie xxxxxxxxxxxxxx
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Post by Rilith on Feb 20, 2010 15:52:36 GMT
WOW, its been a long time.
Holly is now 4 and a half. She is still a tiny little dot and still wears 18-24 month clothes most of the time. The last 3 years have been steady, Holly learned to walk when she was 2 years 9 months. She now feeds herself all the time... very messily yes, but she gets it in there.
Holly also had an attempt at repairing her heart. I was 8 months pregnant with her baby sister at the time and it was very tiring. She went in for the repair, and she wasn't in there as long as we were expecting. We were told 4 hours give or take a little, but she was out after 2 hours. She responded well in ITU and was out of there after a couple of days. When she was on the ward the consultants came to explain a little more of what they couldn't do. When they went to repair the AVSD, and widen the pulminory artery they found that it just didn't flow as it should have done so they had to re narrow the pulminory artery and just simply repair the mitral valve as best as they could. they then told us that there was nothing more they could do for Hollys heart.
Holly was home a week later and although a little tender she recovered well.
It was months later when we finally plucked up the courage to actually ask what they meant by there was nothing more they could do, and what kind of impact this would have on Holly. Basically they will only do surgeries for Holly now if she is struggling, her heart will eventually give up and fail. They hope she lives to her twenties and would be thrilled if this was the case, this sounded very much the best case senario, we didn't dare and still haven't dared to ask what the worst case would be.
Oddly enough to look at her playing with her siblings and her friends at school, you would never believe her heart was as bad as they say it is. She runs around like a complete loon, and is laughing and having a great life.
Kids are amazing, when we heard the news it was almost like we were given a death sentence, we moped about for weeks with the renewed "Why us, why her" senario. Holly oblivious to everything going on inside her just embraces everything and loves doing and trying everything that comes her way. She really does light up a room with her smile. She really does make people walk away with a lighter heart and a filled soul.
How ever long we have, every moment of it is precious.
(PS she can also be a little bloody ratbag too and has her own place on the naughty step.. LOL )
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Post by mum2rachel on Feb 24, 2010 22:04:30 GMT
Thanks for sharing all about Holly - I love how you write esp. the P.S
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