Missing your Mam xox

4th Sep - 6th Sep
This was my 1st weekend away from you and i was dreading leaving you for 2 nights, was gonna miss you and abigail terribley although i'm used to being ok leaving abigail for short breaks, she's an independant little madam. Shirley was so excited bout having you for the day, you could see it in her eyes that morning she couldn't wait to have you. Abigail went off to school and your nanny Tina took you both after lunch til your dad came home from work. Shirley sent me pics to my phone to let me know you were fine, drank your bottle, changed you i think 3 times ;-) and you'd panned out again. Your were a little bugger re- nappy changing time, you'd always trick us into thinking you'd finished and wham you could end up drinking yer piddles ;-) Sometimes i'd be only shutting your nappy when you'd load up more poo for me to change!

I plagued your dad with calls all over the weekend and although i'd a great wkend i sure did miss all three of you something shocking. Your dad was so nice he treated me to a facial and massage for the saturday for all my hard work and good care i'm doing with you xox

Back to Crumlin !!!

23rd - 25th August
It was the day after your christening so a few of us decided to go for dinner in Edenderry Golf Club, although the food was lovely the service was snail slow and disaster, your dad when eventually got his dinner sent it back. Rosaleen, Luke, Maggie, Johnny, Liam, Sheila, Sarah, Mammy, Me, your Dad, Teresa, Abigail, Shirley, Andrew & Kids, all arrived out after we'd booked it that morning, you think they would have been grateful for the large booking!

Anywho on the way back in Crumlin called wondering what time we were gonna be up at??? News to us, apparently your stent procedure had been booked for 2moro so you would have to be admitted 2day. Big rush around then to get all your things together, arrange for abigail to be taken care of (which was never a problem) and get ourselves in order, janey it was all go. Got you up anyway that evening and checked in, in the A&E, they put us on St Peters Ward.

Anne & Alan put us up for the few nites in their place in Dundrum, hated leaving you that nite but nurses were very reassuring that they'd look after you really well and there was no need for us to stay when we were only 10mins down the road, it was still heartbreaking leaving you tho. During the night they moved you out to St Teresa's coz they were wary of your heart condition, i was glad in a way, you were back in commom ground.

Procedure went well, felt like ages while you were down there, i gowned up going down to theatre, god it was massive, they put you asleep in my arms and off i'd to go then til they were done. You were in so much pain afterwards, i really felt for you, they had to give you meds every few hrs to put you ay ease, could only imagine, well i couldn't actually - it must have been awful having they disturb yer little manhood ;-) thank god for short term memories of pain for babies. Was dreading when you would start to remember the hospital as a place where all they do is take bloods or bring you down for procedures.

Even a mention of word home and you were dressed and ready, waiting on discharge ;-) loved the ppl there but hated being there. Only comforting thing bout you being there was that you were in the right place for care and improvement on quality of life. All the same we were delighted to get you home on the Tuesday, 1 day after your procedure, you were such a brave little fighted xox

Your Christening Day

22nd Aug '09
Got up early this morning to get ready for your baptism, we bought you the cutest most handsome suit you've ever seen along with socks, bibs, shoes etc you were ready to be fully kitted out. Fr Ruari Nolan (a friend of the family) baptised you and we had the whole chursh to ourselves. Local priest wouldn't baptise you at a time dat suited us so me, your dad and ro, ro arranged Fr Ruari.

We debated long and hard about the afters of your christening (@ home, bbq, marque, meal 4 family, buffet and god only knows how many other options) anywho we decided we wanted to cleebrate so that everyone could come and we got to show you off to all our friends and family and extened families. So venue was Donoghues Function Room, food by tina & ray and deserts by the one and only Emealda, music was by John & Albert. Everyone helped in cleaning the function room (scrubbing it) and we all had it decorated beautifully for you.

Christening went off well, we got you into pictures with almost everyone we could see there even tho you were panned out for most of it. We all then went back to donoghues for a great day. You were so good throughout it all, the loud music didn't even phase you and when at times when you were up and awake you'd smiles for all. You dad and I left you home later on that evening and got ready to rejoin our friends for the night, although i was happy to call it a day. Anywho despite my reservations it was one very entertaining nite with lots of micky finns and the twins (margaret & magella) gave us some laughs. Just as well nanny Tina stayed over so that we could have a little sleep on the next morning ;-)

Your 2nd B'day Party

20th August '09
Today you had your 2nd b'day party invite from our neighbours, it was Sean's 7th Birthday. From what i can remember you slept the whole time but every1 doted on you the whole time we were there and abigail had a great time. In such a short space of time you sure were getting around lil man and you were getting to meet loads of ppl. xox
<<<<<<< on your changing unit ;-)

1st OPD Appointment

19th August '09
Today was your first appointment in the POD, Crumlin in Fergal Quinns renal clinic. This was my first recollection of meeting Fergal and he was so nice to us. We discussed your condition and progress with him and he filled us in on what options we have to fix your problem.

Your kidney diagnosis was multicystic dysplastic kidney and right pelviureteric junction obstruction, in english this meant your left kidney was almost non existent consisting of just cysts which would disolve over time and your right kidney had an obstruction at the tube connecting the bladder to the kidney. Well this is what i understood it to be anyway. Fergal said the best way to resolve the abstruction would be kidney repair surgery but due to your underlying heart condition a temporary stint would be a better option at this time. A kidney stent (ureteric stent) is a plastic tube-like device used for internal drainage between your kidney and your bladder. When you've had your OHS they'll consider repairing the kidney, so that was the plan of action and Fergal's team will be in contact soon to let us know when the stent procedure will take place. We were dreading the thoughts of u having to go for this procedure but if it helped then let them work away to make you feel better when yer piddling ;-)

YOUR 1st HOLIDAY

15th - 18th August
We got to take you on your first holiday to tramore this wkend and we had such a great time with you and everyone. Imagine only just over a mth old and you were on yer way to the sunny southeast, that is Tramore. This wkend was the first time you had reaction smiles when someone chatted you, you had smiles all wkend for everyone, it made us so happy that outside that sick heart of yours you were beaming with delight of all the attention you were getting, spoiled rotten i said. Well what other way could we be with you other than spoil you, you were so deserving of being spoiled.

On this wkend was Tony & yer granddad kelly who unwillingly had to share the sofa bed in the sitting room (think your grandad ended up on a single blowup bed on the kitchen floor. Myself & maggie shared the twin room with you in between us in your buggy (bed), rosaleen, luke & your big sis abigail had the main bedroom which was ensuite (they alway get the best room)! Sheila, stan & your dad came on sunday, your dad shared a single bed wit me while stan n sheila slept in the blow up bed. Monday morning i never heard so much giving out bout tony and yer grandad's snoring, stan & sheila said they never got a winks sleep, all i could do was laugh. To anyone reading this you are reading right, 9 adults and 2 children in a two bed house in pebble beach!!! only us could manage that one ;-)

Yer dad was in charge of you on the sun nite and we woke d next morning wondering how you didn't wake??? Maggie had got up during the nite, had you fed, nappy changed and back in bed without me & yer dad noticing... My excuse was that when it's my nite off i go into a deep sleep so i'd never hear ya but yer dad had no excuse he probably heard ya but let maggie do his job ;-)

We got to take you to the fun fair loads of time and to the beach as well, we'd such a laugh and your heart condition didn't cross our minds all wkend coz it was all bout havin fun with you abigail and all our family and friends. We visited Laura, Ricky, Sean and Evie in their mobile home and Lena, her sister and kids also popped over to see us while we were in Laura. Lena was just mad bout ya, couldn't get over how tiny you were compared to Henry Lee when he was born. The whole wkend was just great.                         @ The Beach >>>>>>>>

1st App @ Renal Clinic

5th August '09
Today you had your 1st renal appointment with Dr Fergal Quinn in the day clinic. Dr Quinn had made arrangements for you to have a MAG3 scan done today. Maggie, Rosaleen & Luke all came b'coz your dad had to work. It was awful, we had to wait 3hrs b4 they could even locate your records and another 2 1/2 before we we out and on our way home.

It took IV nurses 5 attemps to fit a canula in and you were distraught, my heart went out to you it was so unfair. A dr eventually came and had it in in 2mins, you think the feicin idiots would have got someone who could do the job right 1st time round instead of putting you through all that distress. You sobbed your little heart out how i didn't floor the nurses i just don't know.

A Renal MAG3 scan a diagnostic imaging procedure that allows your doctor visualize the kidneys and learn more about how they are functioning. The nurse injected radioactive medicine through the IV in your foot and you had to lie still under this massive machine simular to an xray machine but much bigger, you were awake for the whole procedure which took about 20mins. Strapping you down was horrible and you hated it but they has this vtech musical projector which soothed you and kept you still, also a little help from me rubbing your hair & skin and singing to you. I then had to change your nappy, feed you and change your nappy again within ten minutes and you'd to go back for more pictures.

It was advised that no pregnant ppl or children were within arms distance of you for bout 12hrs so that the medicine had completly gone through you. Ordeal over and what a stressful day you had to go through, thank got yer little memory forgets things after a few minutes (or so we've been told). It was so hard to see you going through so much, you weren't a mth old yet, i always wished i could take your pain during procedures and my pain treashold is nil, but if i could hav i would xox

1st App @ Heart Clinic

4th August '09
Today was your 1st appaointment with Dr Colin McMahon in the heart clinic in the medical tower in Crumlin. We almost got lost trying to find it, say it's in a newer part of the hospital, it was very modern. There was loads in the waiting room, some of the children we recognised from St Teresa's ward, one in particular was a down syndrome boy who was next to you at one stage, i think he was a little younger than you.

The nurses brought you in to get weighted, your length and saturations. You weighed 3.84kg which was up from your birth weight and they were happy with that. We were ages waitin to see Dr Mc, his reg Michelle called us in to have a chat about how things were going with you and what are the plans for kidney check up's, feeding, sleeping and general progress. She also was delighted with your progress.

Dr Mc then brought you in for an echo, today you wore yer smart shirt body suit, Dr Mc said you the smartest dressed baby he's ever had to his clinic, and how right he was, you were so handsome n' cute. He was happy with your echo and your progress. He kept telling us how great parents we were to you and what an amazing job we were doing with your progress. Think we were less than 2hrs in total in Crumlin which wasn't bad, may have sneaked some shopping in on d way home in liffey valley, my excuse was "sure we'll have to stop somewhere to feed you" and what better place than the shopping centre ;-)

30th July '09

Your Sister's 3rd B'day
The most handsome smartest lil man in town & the prettiest princess

Today was abigails 3rd b'day, you big sister was now 3, how the years have gone by so fast for us, seems not too long ago when we brought her home from hospital.

Well she'd a huge turnout 30+ friends not inc just as many adults ;-) u were dressed to the best in yer tiny lil shirt n jeans with groovy runners to match. Abigail had a really pretty dress and together yez had d place dazzled with yer style.

Gymboree came to entertain all d kids and we only got rid of d last of d partygoers round 10pm. You had a great day and got to meet loads of your friends n family and abigails friends. Every1 wanted a hold of ya tho i tried to minimise handling not to knock u outta sorts/routine, i'm a keep to routine freak tho secretly i spoiled ya loads with cuddles n kisses as did yer dad and we blamed very1 else if yer were outta sorts ;-)

Oh those dimples are just d cutest buddy, miss dem so much xox

25th July '09

Ur 1st B'day Party

Today u attended you first birthday party, invited by the hynes family, coolville, rhode, co. offaly. Yer mam's great friend Caroline invited us all out to her son Mark's 21st. It was cool, they were havin a barn dance 21st party on their farm. Me, you abigail & yer dad went out around 2pm and stayed for a few hrs, you got to meet loads of ppl whilst yer sister was playing with all the boys n girls. You were as good as gold sitting up in yer carry cot, handsome lil man.

We came home later that evening and whilst maggie took care of you, me & yer dad went back out for a few hrs to enjoy the many entertainers providing music from the barn. Was so nervous leaving you but knew maggie would take great care of you. She was delighted to be able to look after you. We came home round 12pm just in time to give you yer bottle and u went down for a sleep. You only woke once during the night (great man) and gave us a little sleep on the next morning ;-)

All your bothers and u were still as good as gold for us xox

17th July '09

<<<<< the first of many adorable newborn outfits we got to dress u in... (supported by enormous cushions) ;-) loved playing dress up with you, yer wardrobe was bursting and u were only 10 days old, so jealous xox


Today was the day yer dad & i had long awaited for since yer arrival into this world 10 days ago. We could now take you home and enjoy you, your cousin faith also came home from hospital today she was born on 14th July. We dressed you in your little red romper which read 'Little Bro' (abigail & paul/trish both got you this romper in different sizes) and makin you sung over yer romper was abigail's 1st comin home snowsuit, you were adorable.

We'd to do a pit stop half way home off the motorway to feed you coz der was no way u were gonna wait ;-) Your welcome home party was massive, all the kids from the neighbourhood gathered round to meet you and all your family and friends decorated the place for your arrival. Balloons and banners galore along with food to feed 5 thousand. Abigail was so excited.

You were on meds for low calcium, vit d supplement & antibotic prophylaxis to prevent kidney infections. You were to be weighed weekly with PHN, bloods in mullingar every 2 wk's and saturations checken when bloods had been taken. Appointment have been set up for you to meet with Dr Fergal Quinn re kidney, Dr Costigan/Dr Cody for calcium/vit d supplements endeocrine issue & Dr Colin McMahon cardiologist, Dr Sharif in mullingar was yer local paediatrition. So many professionals looking after you. Dr Mc's final words before we left the hospital was 'don't let them break him'.

Your first night at home was great, you had a good night, fed just b4 we went 2bed, woke once during d nite for bottle den woke bout 6ish, i'd to alarm myself to wake during the nite to express ya milk, i was zombie like, falling asleep on d job, felt like a milking parlor ;-) stan had dem callin me daisy!

But my god it was so special havin u home with us lil man, we were overjoyed xox

9th July - 16th July '09

9th July '09
Yer dad came to pick me up really early this morning in mullingar and we went straight to crumlin. Yer dad led me up to meet you, i had so many emotions goin round in my head, scared about what was facing us but excited to see, hold, cuddle, kiss and love you. Then came the moment i'd anxiously awaited i got to hold precious you in my arms and let you physically feel the oceans of love i had for you. Yer dad just kept clicking the camera to capture the moment because it was so special.At approx 10am i got to feed you your first bottle it was an indescribable feeling we were beaming with joy putting scared at the back of uor minds.

We met with your cardiologist Dr McMahon this morning and he explained in great detail your condition and further tests they'd be running over the next few days. I this short period i learnt more about the heart than i ever imagined i'd know. Rosaleen, luke, maggie and your big sister abigail came to see you this evening. Abigail kept hugging and kissing you and the others adored you.

We went out to liffey vally at lunchtime to pick up a breast pump and few bits in boots, i'd decided i was gonna give you the best start in life and express milk for as long as i felt able. Was i mad and i only outta hospital, thought i was able to get around, more fool i. A lady in boots advised me on the pumps and she asked if i'd a baby, i told her about you and she gave me a guardian angel pin and said she'd say a prayer for you, thought that was so nice of her. Yer dad and i came home later that night to get some much needed rest and we'd be back up in the morning as early as possible to you.

10th July
Up bright and early to ya this morning, i wasn't thinking bout your condition i wanted to savour the excitement of going up to see you. I often thought of this situation of not being able to bring home your newborn right away and how hard it would be to leave your baby in hospital. I have to say it was really hard but very comforting and reassuring to leave your newborn in the hands of the nurses in St Teresa's Ward. They went out of there way to support us and make us go for lunch and breaks, never once did i feel insecure about leaving you in their hand, they were all so kind and caring.

You came outta the incubator today and we got to bath you today for the very 1st time, it was so much fun, u didn't like the water and cold too much. We then got to dress you in a very cute i love my mummy sleepsuit. It wasn't long before you got up some wind and we had to change you into i love my daddy sleepsuit. Yer dad was delighted. Yer nanny & grandad kelly came to visit you today as did shirley, andrew and linda, they we're all delighted to be able to hold and cuddle you.

Kathleen our clinical nurse specialist came to talk to us today about your options and future. She was great support to us, a really nice lady. Each day is was getting harder to leave you in the evening time but we had abigail to think of.


11th July
We were back up bright and early again this morning. Paul, Trish, Sarah and yer nanny kate came to see you today. You were the busiest baby on the ward, loads coming to see ya.

12th July
Back up to you really early again this morning, it was really fulfilling opening the door each morning to see your beautiful blue eyes and you were growing a sence of awareness that we were present. Stan, sheila, maggie, rosaleen and luke came to visit you today. You were so popular lil man, the nurses were amazed at all your visitors. It was today we got an eyes wide open first smile including 2 adorable dimples from you and and at just 5 days old, smart lil man ;-)

10 days in crumlin
Your were in crumlin for 10days in total. In this time you had bloods taken every day and lots of tests done some of which included brain scan, kidney scan and cardio catherisation(angeogram). The brain scan came back clear, thank god but the kidney scan showed you'd just one kidney. Your kidney condition was left multicystic dysplastic kidney (non existing) and right PUJ abstruction. Your bloods were showing low calcium and combined with the kidney abnormalities docs decided to do a fish test to test for Digeorge Syndrome. Digeorge Syndrome is a deletion of chromosone 22q11. On 16th July '09 bloods test confirmed you had Digeorge Syndrome. Your dad and i needed to be tested now for the deletion. It was so upsetting, you had so much to deal with and now this, it seemed so unfair and cruel. You now had a 1 in 2 chance of passing this onto your children.

Then again how can anyone explain lifes cruelaties, seeing the many sick children in this hospital.

8th July 09

Not even 2 days old yet, still no sign of you getting outta SCBU but still nothing from docs to say how sick you were. Dr Bates informed us you were gonna have a brain scan which scared us but we were told it was normal practice to do this to make sure brain activity was ok. He told us you'd be also having more x-rays and bloods as well to see if anything new shows. Still no indication of heart condition which was yet to be identified. I wanted answers and answers today so i arranged a meeting with the main doc for the afternoon and waited patiently. Yer dad went home to take abigail to chloe's b'day and was then gonna come over.

I got loads of pics of you and you even opened yer eyes a few times, you had the most beautiful eyes, this was great i knew you knew yer mam n dad were close to you and you could feel our pressence. You had to stay in the open incubator so we didn't get to hold you. The brain scan machine came and he indicated that it was all clear. He tried using this machine on your heart but couldn't get a clear pic, mullingar didn't have an echo machine in the hospital which would be the correct machine to get a clear picture of your heart.

That afternoon your dad and i got the biggest shock of our lives yet, Dr Sharif came in and listened to your heart, she lfet the room and came back to tell yer dad and i that she detected murmur's (plural) in your heart and that she's arranged for immediate transfer to our lady's hospital crumlin. She was so supportive and gave as much detail as possible to what she thought it may be and full reassurance that you were going to the best possible place. She reckoned that the valves were the wrong way around in your heart and explained what they can do and how ur gonna be in the best hands possible, with the best cardiologists in ireland.

This had little or no meaning to your dad and i we were distraught, it was like a knife had been put through our hearts and our world had come crashing down on us. We were supposed to be celebrating ur arrival and beaming with joy that we'd finally got our Billy we'd always hoped & dreamed for. This was so unfair on you, you were so small and all we wanted to do was hold you tight and make you feel safe and loved. Coz lil man i can tell you now you could have not been loved more than we the love we had for you.

Your dad went with you to crumlin, i was still an inpatient so i couldn't go, this hurt me in so many ways it was unimaginable. We got to dress you for the 1st time in yer stripes and stars romper (see above), you looked so cute. The crumlin cardiac team arrived, your grandad kelly had brought yer dad over and he was very upset, he came in to kiss you goodbye. You were placed in a closed incubator attached to lots of machines. You were transported by emergency ambulance and we were told of the risks of the journey ahead of you. Your do do went along with you, you loved it probably because you had yet to be fed, poor lil man xxx

Your godmother Teresa came and sat with me for a while, i filled her in, didn't take calls from anyone i was too upset. Teresa left and it felt like ages before yer dad telephoned me to tell me bigger than expected devestating news. You'd had yer echo and he was in an awful state and said der was loads missing in yer heart and he didn't understand any of it. He did know that you had major heart complications and the cardiologist would meet with me in the morning.

One good thing was that yer dad got to hold, cuddle and kiss you for the 1st time. I was in an awful state now, i tried my best to get SCBU team to phone crumlin and get an explaination in english but cardiologist had gone home. I arranged for my discharge papers be drawn up that night so i could leave early the next morning. I didn't get much sleep that night, nor did yer dad i'd imagine.

So much has gone on in your life and you were just 2days old, brave lil man xox

Our Angel Arrives - Day 1

12.12am on 7th July 2009 Baby Billy Murphy arrived in Midlands Regional Hospital Mullingar & how handsome you were lil man.

I got to cuddle you for just a short while. To me and yer dad you were crying but the nurses said you were grunting, your saturation's were low so you were taken immediately to SCBU to get checked over. After a short while your dad and i visited you and we got a big fright. We were under the impression that it was just gonna be a routine check. You were hooked up to lots of machines in an open incubator. Nurses and docs said to go back to the ward and they'd keep us posted.

Your dad stayed at my bedside that night even tho it was against policy to do so. Early into the morning a doc came to tell us your chest x-ray seemed fine and you were now lower down the scale than earlier thought for a heart condition. Your dad and i were still in shock, we were told you'd be back withing a few hrs up to the ward to us, but der was no sign of this happening.

Your grandad kelly and both nanny's came to visit you 2day in SCBU, they absolutely adored you, you were irresistibly cute. Throughout the day docs were doin repeat bloods and x-rays and everything came back ok. Still no sign of you getting out of SCBU tho which was worrying. Nurse in the unit said to us it would be the wkend b4 they'd even think bout letting you home.

That day a lil baby came into SCBU with similar symptoms as you did, 1 major difference tho, within minutes this baby's saturation's went right up to 100%. It was from this point that i knew you were sick, not knowing what was actually gonna face us tomorrow.

And that lil man was your 1st day into this world :-)