Special Needs · Uncategorized

Get Pixie Pedalling – an update

Last August I wrote about a fundraising appeal to purchase a wheelchair tandem bike so that my daughter could go on bike rides with her daddy. You can read about that here

Well, the outcome of that crazy event was that the team from Virginia Triathlon and Cycling Club WON the four-man category in the Race Around Ireland!!!! Yes they won!!!! After cycling from 3pm Sunday until just after 10pm the following Wednesday without stopping – yes day and night – and covering nearly 2200km around Ireland they only went and bloody well won!!!

By the time the team and their hugely important support crew got back to Navan we were all in a state of delirium. I had hardly slept, had totally neglected the housework (ok that wasn’t a hard one for me) and my main achievement every day had been getting our daughter up and out to school. Most of the rest of the time I was glued to my laptop where we could follow the race in real time. Now this wasn’t – obviously – camera footage, this was a tracker with a little black dot for each entrant in the race which enabled us to see exactly where the lads were and more importantly to see if their close rivals were nearby. At times it was practically neck and neck and I think I can safely speak for everyone else involved who was watching from home that the tension was almost unbearable at times. My husband was one of the support crew and we occasionally managed to have brief phone conversations which gave me some idea of what it was really like out there.

There are many many stories that could be told about Team Pixie’s Race Around Ireland. Some of them are probably not suitable to be told here! I am sure that everyone else who was involved in whatever way will never forget that mad crazy week in September when our world shrank to a little dot on a computer screen and mad texts at 3am asking where the lads were and how was it going. For us as parents it was the most incredible time. We are still so touched by the kindness and generosity of people to do something for our little girl.

The fundraising appeal was a huge success and the bike has been ordered and will hopefully be with us very very soon. I know that getting the bike was the main focus for the team and all the club but we are thrilled to learn that the four guys – Johnny, Jimmy, Lorne and Matt – have been nominated as contenders in the Anglo Celt sports awards!! We would love to see them get the recognition they so richly deserve and if you think so too, maybe you’d text Cavan 9 to 57199 (Republic of Ireland only). If they are the overall winners on Jan 30th it would just be the crowning moment on an incredible experience.

Advertisements
Parenting · Special Needs

Our little ray of hope – Fionnuala’s arrival (5 years later!!)

Well they do say better late than never!

Some of you will know our story but for anyone who doesn’t a quick recap – our DD was diagnosed at 29 wks with a rare neurological condition and had to be delivered by CS at 39+2. She is now 5 years old (no I don’t know where those 5 years went) and while I have had emotional issues over her birth I feel I want to write it all down to see if that helps me reach some closure. So here we go.

This was my second pregnancy and having lost our first baba to mmc the previous year I was hugely nervous throughout the first trimester of this pregnancy. Once I got to 13 weeks I relaxed a lot more and began to really enjoy things. I felt healthy, baby was growing nicely, it was a textbook pregnancy. I was booked into the MLU in Cavan hospital and was very happy with the care I was getting. I was keen to give birth with minimal if any intervention and no drugs.

So when we got DD’s diagnosis everything changed. I am not going into all of that here, but one of the many things that had to change was my birth plans – from being a low risk MLU patient I became a very high risk, full-on intervention, planned CS delivery. Now I want to say here that at no time did I ever argue for a vaginal delivery – it would have been too dangerous for F to even consider anything else.

I was scanned every week to monitor babs and at 36 wks my CS date was booked – 3rd July. I was so upset at the thought of the CS – it just seemed like too much to deal with. The obs was brilliant with me all the way through. At 37 wks he told us he had to change the CS date. When I snapped that “you better have a really good reason!!” he just smiled and said yes he did – he wanted a specific paed to take our daughter’s case so wanted him present at the birth. The man he wanted was on emergency call on the 3rd so the CS was changed to the 5th. We are eternally grateful to the obs for this as F has the best most caring paed we could have asked for.

So roll on 39+1 and I go into hospital to have the CS the next day. We were both very tense, scared shitless of what might happen the next day (we had been warned that she might not breathe at birth etc). Got through the night – no idea how. Woke up the next morning and waited for it all to begin. First thing was the catheter. OUCH OUCH OUCH. No one warned me they would do that before the epidural!!!!!

So DH arrives and we all head to theatre. Him one corridor with a nurse, me another on the bed. He was taken off to get scrubs on and I am wheeled into theatre. By this stage I am beyond terrified – so desperately wanted her to arrive but was in fear of how she would be. Anyway, the anaesthetist (sp??) comes over to do the spinal block. His assistant told me to lie on my side and draw my knees up as close to my chin as I could – I looked her straight in the eye and in all seriousness said “I can’t do that, I have a big bump”. She very gently just held my hand and said “yes I know, thats why you’re here.”

The needle went in and they moved me onto my back. DH was still outside at this stage and I was really beginning to lose the plot. I started counting the staff to keep calm but the buggers kept moving around the theatre!! Then I became totally convinced I could move my right toes – shit!!! That meant the epidural hadn’t worked and I would have to have a GA and DH wouldn’t be allowed in and neither of us would hear our baby’s birth and and and – panic rising rapidly. I told the team I was wiggling my toes and the anaesthetist came over, looked over the screen and gently said “Dr S has just made the first incision – did you feel anything?” With a sense of relief I shut up and looked over to see DH walking in with a nurse. He was put sitting at my head and to this day neither of us know what we said to each other while we waited.

After an amazingly short space of time we heard the incredible and longed for sound of our little daughter roaring her head off. Dr S announced “And we have a baby girl! But we knew that!!” (Prenatal scans) I burst into tears and sobbed “She’s alive, she’s alive”. As I turned my head to watch the paed and team take her to the cot thingy I could see some of the nursing staff were in tears (they had been with us all the way since diagnosis) and we could see two arms and two legs waving furiously and the roaring continued.

After a few minutes our darling girl was wrapped in a blanket and handed to her anxiously waiting daddy. I should explain that some children with F’s condition can have facial malformations and we were aware of that possibility. So when I saw she was wrapped up with the blanket covering most of her little face I panicked again and demanded DH let me see her face. He peeled back the blanket and the most perfect, teeny, adorable little pink and white face peeped back at us. More tears of relief.

While I was being tended to at the other end, we just gazed at our little bundle who was breathing on her own, who scored 9 on her APGAR at 2 mins and 10 at 5 mins, who was here and who we already were madly in love with. And we chose her name – Fionnuala. After about 10 mins they took DH and DD off to SCBU to give her a thorough check and carried on sewing me back together.

I still can’t describe the elation, relief, love, shock, amazement that I felt for the next hour or so while I was in recovery on my own. Yes it would have been preferable to have her and DH with me but in a general hospital thats not an option. But we were reunited on the ward soon enough and we were able to spend the whole day with our little daughter just revelling in her existence and feeling so relieved that she had passed the first big test.

It was the next day when I was struggling to establish breastfeeding and F had her first brain scan that the enormity of it all began to hit. I felt that I had not given birth to my darling girl, rather that I had been a passive onlooker and it had all just happened to me. TBH I felt I had failed her. Looking back now it is possible that I would not have felt this so intensely if the feeding was going well. But I felt like this for a long long time – and still do to some extent.

I convinced myself that I would be able to resolve these feelings by having a VBAC next time round and then everything would be fine. That hope was dashed when F was 2 and we learnt her condition was genetic with a 1 in 4 chance of happening again. After much agonising we decided not to have more children and so I had to come to terms with the fact that I would never experience a contraction, never know the pain of labour nor the sense of achievement that I assume you get after pushing your baby into this world. That has been hanging over me for ages now. But you know what? Writing this down has helped. I still wish so much things had been different. But I realise now that I didn’t fail my little woman.