|Posted by Small Steps on August 12, 2011 at 2:25 PM|
Niamh Grace and her miracle journey so far.
Hello my name is kate and I have a eight month old daughter called Niamh Grace and I guess I will start from the beginning, it seems like a life time ago now but I will try and remember all the important details to try and help you understand our journey so far.
Birth of my baby girl
Niamh was born on the 29th November at 37 weeks although her gestation is questionable considering the size of her, her weight was 5lb 14oz’s bit on the small size for the dates. My pregnancy wasn’t straight forward as we would of hoped, I had a large ovarian cyst weighing 7lb 15oz’s and throughout my pregnancy I was in extreme agony, with Niamh being my first child I felt no one took any notice of how much pain I was in at least once a week I was having a trip to the doctors or the hospital just to be turned away and told it was normal pregnancy pains. It wasn’t until my midwife demanded an all over body scan they detected the cyst high up on my right side. It had been hurting so much because it was attached to my left ovary and had been twisting around the baby and had comfortably made a home to grow in on my right side. Throughout my pregnancy Niamh hardly moved and it was noticed she wasn’t breathing properly either as well as being on the small side.
Every one put it down to the cyst being so large and that why everything was restricted however it all makes sense now. On Friday 26th November I had been admitted to hospital as I thought my labour had started, it was a false alarm however they were worried about Niamh’s heart rate and kept me in. On the Monday the 29th they did a scan for a hour and it showed Niamh not moving once and her breathing was poor, the decision was made to take me in for a caesarean. The thoughts that were running through my head were unreal I was excited, relieved because of the pain and scared like any new mum. Niamh’s dad was in for a shock he was coming to pick me up not to watch his daughter be born. Delivery wasn’t quite straight forward they had to do a classical caesarean which is being cut open from the top of your belly button downwards. First they delivered Niamh I remember straight away she didn’t cry which worried me but then she let out a little squeak and the relief that washed over me was unreal. They then had to put me to sleep because I was starting to feel the pain and it was taking longer than anticipated to get the cyst out. I remember waking up in the recovery room and seeing my beautiful baby daughter properly for the first time the love that over comes you is hard to put into words but it was magical.
First week of life
From being in the recovery room Niamh straight away didn’t take to breast feeding but some times this is normal and didn’t cause anyone great concern back in the room I was excited, in pain and very over-whelmed. It hurt to pick Niamh up and her dad was a great, he helped by giving her to me, help with the feeding and generally just being there. First night on the ward was awful and looking back I cant remember Niamh waking up for a feed once. I requested to be moved to a room if possible I knew I would be in for a few days and I just wanted it to be me and Niamh. She rarely woke, feeding was a nightmare we tried breast,bottle,cup feeding and in the end I was expressing milk and giving it to her via a syringe. She would just gurgle the milk in the back of her mouth and fall asleep with it there, two hours a feed it would take and she was getting fed three hourly just for her to take the smallest quantity. My concerns for her were increasing by the day, she just was so lifeless but she did look like a angel sleeping, the most beautiful thing I’ve ever seen I would just lie there for hours watching her sleep. Day six I was demanding to go home, that’s when we discovered she had lost 14% of her body weight eventually they started to listen what we had to say. We discovered that the doctors did write in her file there wasn’t something right with Niamh they thought she had a hole in heart, news to us I was angry no one had told us but a test proved them wrong however later that day She was taken to special baby care unit were a NG tube was placed. I was hysterical in tears I couldn’t comprehend what was going on to my baby but the worse was yet to come!
The weeks that followed.
Special baby care unit wanted to keep Niamh there for further observations her saturation levels, this is when it measures the oxygen levels in your body 92 and above is expectable Niamh’s was fluctuating between high 80’s and 90’s she was constantly under the watchful eyes of the nurses I never left her side I sat in the same chair for 2days straight just watching her breath. The doctors came in but with no answers to what was going on until a week later the doctor noticed what we did, the jumpiness, hiccup’s, poor feeding, floppy and sleepiness. He requested a EEG it measures the electrical activity in the brain, we sat and watch our baby with all these probes all over her head, I just broke down we should be showing our baby off to the world not watching her going through this. It wasn’t good news a neurologist from the Great North Children’s Hospital was asked to come and see Niamh. He asked for a MRI to be carried out and a lumber puncture, I think out of all the tests this was the worst I refused to go in the room this was the first time I heard a scream come out of my daughter and you could tell she was in excruciating pain I couldn’t take it I remember cover my ears up just to block out the noise. Afterwards she just looked like the life had been dragged out of her she was pale and couldn’t move. The first time meeting DR. Ramesh was the worst news of my life he sat me and Niamh’s dad down and said the EEG results showed a poor prognosis he was 80-90% sure she had NKH he explain this was a rare epilepsy and not many people in the world have it. I thought epilepsy that’s not too bad medicine will control it and she would live a normal life. How wrong we were I sat there numb as I was told my daughter will be totally dependent on others for the rest of her life, she will develop very little and will be lucky if she survives past two years of age. I ran out I couldn’t understand what I was being told, I remember crying uncontrollably and feeling sick. A nurse persuading me to go back into the room DR. Ramesh continued to say Niamh is very poorly and we will be lucky to survive the next couple of weeks and they are vital. He wanted us to be transferred to the hospital he worked in to carry out further test and try and discover medication to control her seizure activity. We decided to have Niamh christened in the hospital the news we were being told wasn’t good and I knew I was doing the right thing by getting her baptised. My family came from all over the globe to watch her be christened, it would be the first time a lot of them had seen her and everyone kept it together for mine and Niamh’s dads sake but I knew deep down they were dying inside too. Being transferred to the RVI was nerve racking, a new place to get used to new people was hard. We were put on a neurology ward which was terrible we seen severely disable children and after just being told our news I couldn’t help but look at them and cry, if my daughter makes it through the next couple of weeks that is going to be her in years to come, that was hard to swallow. Daily bloods were taken another lumber puncture was done all coming back inconclusive. Meaning it wasn’t NKH but it still wasn’t good news a lot of medicine was tried but with no avail. The condition that they finally decided to treat her with was Ohtahara syndrome because her EEG is the only thing that is abnormal and the things we describe and they have seen, are very similar to them describe in the text about Ohtahara. Again this syndrome is very rare not a lot is known about it and it has the same outcome as NKH, of course I was devastated but in the back of my mind I knew what was happening and I knew it wasn’t good I suppose I just was holding on to that little bit of hope. We were stuck in limbo, we were allowed to start taking Niamh out for a few hours a day, it was brilliant being able to show her off, but people would stare at her NG tube and it would make me so paranoid but this is something we would have to get use to. Whilst in the hospital I went to put Niamh down one day and she just flopped back, she wouldn’t respond to anything I was doing, I panicked and called for the nurses. I seen the look of terror in her eyes as she called for help I stood back and watched them call for emergency meds, wires were hanging off her blood pressure was through the roof but her heart rate was low. They couldn’t understand what was happening, I remember the doctor saying they think her brain is coning, I didn’t know what this meant but then she said to me I have to make the decision whether to resuscitate if she needs it. Then it hit me they thought my baby was dying, I had to phone Niamh’s dad to get there ASAP. I was shaking watching my daughter lie there helpless, they wanted a CT and EEG preformed straight away. She eventually came to and opened her eyes all tests came back normal for Niamh, I later found out what coning was its when your brain gets sucked into your spinal cord and causes instant death , we sat by her bedside and I prayed, ICU was informed she probably be admitted that night. My prayers must of work because she made it through the night and she even did so well we were allowed out early February. No one could explain what happened that day three doctors, three different opinions- viral infection, seizure and the steroid injections she was on that’s what they come up with but what they could tell us is she could do it again at any moment. I wanted to get home and forget the last three months the fact we spent Christmas there our first Christmas as a family, the fact that she had all them wires on her and a breathing machine on a night time, the fact she nearly died, I just wanted to forget I stuck myself in a bubble with Niamh. Being in hospital isn’t reality , all you have to do is concentrate on Niamh, but back at home I was scared how I would cope.
Having Niamh at home
We had fantastic home support, the team that is behind Niamh is great all concentrating on helping her development. Two weeks after having Niamh home she developed phumonuia we were in hospital again her breathing was so poor she had oxygen on, again it was touch and go but she pulled through and again she was let out, not knowing she had caught bronculitius whilst there, so two days later she was back in. She looked so poorly this time and I increasly became concerned for her health, her breathing was her biggest threat, a healthy baby has 30-40 breaths a minute Niamh has between 9-35 getting off oxygen was hard but she did it again, she amazed us with her strength and willingness to be here with us it. Whilst being admitted this time she had her first major seizure, she was given her emergency meds and she stopped breathing, again everyone rushed to help she started breathing again we eventually got Niamh settled but a hour later she started fitting again and I watched helplessly as my daughter fitted, doctors didn’t want to give her the emergency meds again just in case she stopped breathing. They let her fit for a hour and a half, I remember me and the nurse just hold Niamh’s hand not knowing what to do. Eventually she came out of it on her own but it had sunk in what had just happened and I was furious they are professionals and they should take care of all there patients. Personally I think because they have never worked with the condition before they don’t know how to handle it but because a few people complained about that night a care plan was put in place so people know exactly what to do and so they can understand the condition a bit more.
Eventually we got home for a long stretch she would have weeks were she would fit quite a lot and the ambulance would have to be called she has also stopped breathing again. Knowing your daughter could pass at any moment is the most scariest thing I think any one could face. Through it all I have anxiety disorder, I’m scared of what lies ahead my daughter dieing is my biggest fear but she is here with us now and is doing well better than the doctors thought , her consultant has even said she amazes him and that puts the biggest smile on my face because I know she is going to be severely disable but for her to still be alive is miracle and that is something I never take for granted.
I have recently been introduced to another family who also has a daughter with a serve form of epilepsy meeting them for the first time really brought it home, but in a strange way it has help me become a better parent I have realised none of this is our fault it is unfortunate thing that just happened. Judith and I decided that in the North East area there is very little in the way of support for babies and toddlers with epilepsy and developmental delay so with the help of our epilepsy nurse we have set up a support group called small steps `seize the day`. We have already been on the local radio, Judith’s school raised over £4000 and we our having a launch party all in aid of the charity. Its exciting times we have had a lot of support and people willing to help, its amazing how our babies have touched people’s hearts and the response is great.
Niamh has recently had a PEG placed instead of her feeding tube through her nose she has had one placed directly in to her tummy. Addmittly I was so scared when she went into the operating theatre because of the complications but she did fantastic and its great having no plaster covering her beautiful face and people don’t really stare anymore. Its not all about vanity though hopefully it will stop infection rate and might stop her being sick as much, but only time will tell. It has been proven that she can see but her seizure control is poor so they think the signals of what she is seeing is not getting to the back of the brain properly. She can now take small tasters orally and it is proven that she does swallow it properly however with her being quite poorly recently we stay clear of oral food until she’s fit and well.
Her seizures have been more frequent recently we are concerned her medicine isn’t working as well anymore but we will see. The doctors are doing all they can for Niamh so hopefully see will go from strength to strength.
So that is our story so far I have tried to fit as much in possible but I could ramble on for pages and I don’t want to bore you all. I hope I have got across how serious Niamh’s condition is as well as how great she is without her I wouldn’t be the person I am today, she is my world and I hope you can see that when I write my blog. I will update as much as I can to tell you all how my angel is doing.
If you want some one to talk to, if your going through the same thing don’t hesitate to contact me on 07974465297.