My 3 week old in Special Baby Unit.

Egan2012

Hi guys,
My partner gave birth to our little boy Darragh 2 weeks ago. He will be 3 weeks old this coming Monday. When Darragh was born he was rushed into the Special Baby Unit in Mullingar Maternity Hospital. He had large amounts of meconium in his system and he was unable to breath.
When they got his oxygen levels back to normal he spent the first week of his life in an incubator and been tube fed. He seemed to be getting better in leaps in bounds. We left him on one of the nights and went home and all of a sudden in the space of a few hours he just went backwards. He lost 80% of his birth weight and he was on deaths door. I decided to get a blessing done for him and the nurses in the Unit organised for a priest to come in and do it.
A couple of days after the blessing he came on in leaps and bounds again. He came off all the tubes and machines and started drinking bottles. At this stage we really thought he turned a corner. Then we noticed after a few feeds he started vomiting. So we are at the stage now where he is vomiting after every bottle.
They have done scans on his head, stomach, kidneys,liver and heart and they all came back clear. They done loads of blood tests as well and they all came back clear. On paper Darragh is perfect.
He took a turn for the worst last night and we got a phone call in the early hours to get to the hospital. When we got there he was back in the incubator , back on the tubes and back on a drip. This was very disheartening at this stage. The doctors have told us they have contacted Crumlin Hospital for a second opinion. They have gave Mullingar one more idea to try and if that does not work he is been transferred up to them to see the specialists as Mullingar are puzzled.
I have never dealt with Crumlin before and I don't know what to expect. Are they as good and as nice as I have heard people say about them? I have been told they have facilities for families that are traveling long distances to accommodate them. Is this true? We are just at the stage now where we are trying to get organised for a long road with baby Darragh.
Any information or input would be hugely grateful.

January

Crumlin are absolutely fantastic and they do have parents accommodation, they do charge though, not sure how much a night it is. Ronald McDonald house may be able to help also, they run a house near Crumlin Hospital too.

I hope your little boy is ok and home with you soon.

bp

You poor thing. Ronald Mc Donald house is very good and built for this purpose.

I hope baby Darragh gets better soon

Hannibal Smith

I don't have any experience with Crumlin. ..but just wanted to send my very best wishes to yourself and your partner and I hope Darragh is home with you soon xxx

yellow hen

Crumlin is specialist paediatric care and if darragh were mine, I'd want him there. The cubicles there are tiny but your partner may be allowed to bunk on a mattress beside him. There definitely wouldn't be room for you both. As previous posters mentioned, Ronald McDonald house is prob worth a try.

I can't imagine how worried you are. I wish darragh a good recovery and a long healthy life. Take care of yourself and your partner also...it's a trying time for you all. Best wishes.

Rose35

My heart aches for you both, poor little darragh, hope all is well soon, poor little man, sorry no experience of crumlin but experience of how wonderful it is to have a little son, god bless. xx

How Strange

My sister was in Crumlin as a baby for 10months in intensive care and special care and I've got nothing but the highest praise and respect for the medical staff there from consultants to nurses.

I hope your little boy is home with you soon

sonners

Crumlin are brilliant, you can breathe a sigh of relief when you get in the door as you and Baby Darragh will be in the best hands in the country.

You'll find info and contact numbers for accommodation here: http://www.olchc.ie/Children-Family/Parent-Accommodation/

I've previously stayed in both the Ronald McDonald house and the parents accommodation and couldn't fault either. The staff are amazing and will do whatever they can to make your day a little easier.

Best of luck, I really hope you get answers soon xxx

Ms2011

Another vote here for Crumlin, my son had an op there in April & I can't say enough how great they were.
Nurses sat down & went through the op step by step & were just lovely post op too, I really felt confident that my son was in the best hands.

Wishing Darragh & his family all the best, please God he'll be home with you soon x

Egan2012

Hi again guys. I just want to thank all of you for the best wishes. It means a lot. y partner will be staying up there most of the time as she doesn't drive and I will be back home with the other kids and sorting school and all that kind of stuff. So I will be up and down in the evening times.

Moonbeam

He will be in the best hands possible in Crumlin.
I hope your little baby gets well soon.

mauraf

Hi Egan2012,
Felt compelled to write a note when I read your story.
My daughter had more or less the same start in life as Darragh 5.5 years ago. She too had meconium in her system, and was unable to breath or feed unaided. The first week of her life, was a bit like what you are going through now - some days good, others downhill - tests, scans etc all revealed nothing but she still wasnt rallying.
All of a sudden we seemed to turn a corner, and we arrived one morning to find her out of the incubator. She was on a dose of antibiotics and was in and out of the maternity hospital even after she was discharged....but was a small price to pay to have her 'well'.
My daughter is now a lively, bright and happy 5 1/2 year old now - and her rocky start in life has never held her back!

Just wanted to let you know - it is a tough time for you at the moment, but the doctors / nurses are fantastic - and Darragh will receive the best of care. PG - you will look back on this tough time and be able to smile at how you came through it.

My daughter was born in the Coombe - paed there who looked after her while in special care, was utterly fantastic. He also looked after my son a couple of years ago, who had a few other complications after birth. This paed is affiliated to Crumlin as well...not sure I can post his name on public boards - but will try and PM you his details. But rest assured - whoever Darragh gets will be fantastic - they all are.

Hope all works out ok for you and that you are holding up ok,

Maura

dollybird2

Egan2012 I hope Darragh is doing really well. X

Egan2012

Hi, guys,
I havn't been on this really since I put up the post. I am over whelmed by the amount of posts on this. Thanks so much it really means a lot.
Darragh was 7 weeks old yesterday. 3 weeks ago we eventually got a bed for him in Crumlin. We were there for 2 days and we got some news. One side of Darraghs brain is not developing. This is the reason he can't keep his food down. His brain is sending signals to his stomach telling it not to accept food.
We are lookng at disabilites down the line. The doctors can't tell us what we are looing at because they don't know. We are not going to know until he starts developing. It could be his eye sight, could be not able to walk. We don't know. There is just so many possibilites. All we can do now is get him home and love him and care for him. He isn't going to be any less loved than my other kids. They might have to clamp his stomach now as everytime he eats he gets sick. So the option is clamp his stomach and have him permantly on a tube running into his gut. This is what they are doing now. So the doctors came around today and told us if we can start getting weight onto him he can come home. It's going to be a massive learning curve but I think myself and my partner are up for the challange. I must give all credit to Crumlin. They really do know what they are doing. They are so helpfull and very good at what they do.
Anyway folks now that I have you upto date I will head off. I'm travlling to Crumlin tonight. I will keep updating this as I am really gratefull for all the support.
Talk soon folks.

3DataModem

Crumlin is great.

Digs

Sending good wishes to your family and your special little boy. He is a lucky baba to have such great parents. Hope all goes well for him x

Moonbeam

oh Egan sorry to hear that but you and your wife and your positive attitude will make sure no matter what happens that he reaches his full potential and every child is unique!
Good Luck to you both.

yellow hen

OP, I'm really sorry you got this news. It's something none of us wants to hear but it happens all the same. How you deal with this now is the most important thing. It sounds like you and darraghs mother are tremendously loving and giving parents and I have no doubt that darragh will receive the same love and opportunities you afford to your other children. I wish you and your family every happiness in the future.

nikpmup

Nothing to add to the above but my good wishes - Darragh is a very loved & special little boy xx

Egan2012

Hi again guys, This is what Darragh has, its a rare syndrome. schizencephaly
I was wondering if anyone has heard of any support groups in Ireland about this? I have googled it but have found nothing.

xzanti

Egan2012, I'm sorry I have no medical advice to offer.. but I just wanted to send my best wishes..

You sound like an amazing family.. he is good hands by the sounds of it.. Thank goodness he came out of the woods!

I hope you have him home soon for big cuddles!!

bp

Thinking of you and your family. I know nothing of this disorder but hopefully someone can offer advice

How Strange

Egan, I'm sorry to hear about Darragh's condition. I'm thinking of you and your family.

Just to reiterate what others have said; your positive, fighting attitude will be an immense benefit to Darragh in the future.

saggycaggy

Sorry to hear this for poor wee Darragh-I wish him all the best and i'll keep thinking of him and saying a prayer for him.

It sounds like he has a very loving family looking after him.

Moonbeam

Try Liams Lodge http://www.facebook.com/LiamsLodge?fref=ts they might be able to put you in contact with someone.

Egan2012

I have found a page on Facebook and it is great. i'm talking with people and hearing their stories as they have the same thing in the family

lang

@Egan2012 I am wishing you and yours all the best at this time. My thoughts are with you all. Stay positive!

Egan2012

Hi guys,
thanks so much for all the messages. I have some updates on Darragh again. He is up to about 8 pound weight at the minute. He is 5 months old now. I know he is small for the age he is but it is better than the 3 pound he dropped down to.
I don't know if any of you came across a post I had up boards last year about housing. I put up one about a house we were renting off the council on the RAS Scheme. The post was about the infestation of rats and mice around the house. The whole back yard was covered in decking and there was a nest of rats under the deck. No matter how many mice I caught in the house there was still always more. I contacted the council they told me to contact the landlord and that was like talking to a brick wall. Anyway back to the point, we went back privately renting the week before Christmas so we could get Darragh home for Christmas.
We had a brilliant Christmas with him and he went back into Crumlin to get a peg in his stomach on the 6th of January. He is still in there recovering after his surgery so we hope to have him home in the next couple of days.
He had an eye test during the week and the results are that he has cateracts. They done some tests to see how he would have got them and they asked mum if she had come in contact with any mice or rats. I nearly hit the floor when I heard this. I told them about the story with the old house and they think mum could have contracted an infection from something she touch out the back of the house, something a rat peed on or there could have mouse droppings in the house. They said this would explain why she was so sick through out the whole pregnancy.
I'm still trying to get my head around it, If it comes back confirmed that this was the reason, What should I do? Should I seek legal advice? Is there any point in seeking legal device as I have no record of all the phones I made to the council and the landlord? Would I be making a fool out of myself?
Any advice on this would be hugly gratfull.

Moonbeam

We can not give out legal advice here but I would be keeping a record of all correspondence with the council and landlord and I would seek legal advice.

I am glad to hear Darragh is doing well and that you are back in a safe environment,I hope if you were on the Ras scheme given the circumstances that you have not forfeited rent allowance.

uck51js9zml2yt

Hi Egan

You could get onto the environmental health office for your local council. This is the Dublin one.


Westmeath is 044 9384890



HSE, Unit 7C, Lough Sheever Corporate Park, Robinstown, Mullingar

Also contact Threshold for advice. They are in Manor St, Dublin 7.


I'd contact Threshold first for some impartial advice.

Rose35

So glad to hear Darragh is doing well, sorry i have no advice to give you on the other issue but good luck with it!! xx

Egan2012

Hi guys,
Just another update on Darragh. He got his peg surgery last Monday. He spent 4 days in recovery and came home on Friday. On Saturday Morning my partner was changing his dressing and noticed the skin wasn't healing around the wound. We brought him to Mullingar maternity hospital because it was the closest to us. The surgeon said that is quite normal and that it will heal in a few days. Yesterday morning again my partner was changing the dressing and we noticed the hole was actually bigger that the peg and any thing we were giving him threw the peg was flowing back out the hole. I said **** this and brought him straight back to Crumlin where the surgery was done.
At the moment they think the inside of the peg has gone missing and they think it could have lodged in his bowel. They are doing an x ray on him at the minute and if this is the case he is going straight in for open surgery.

To be honest guys, I really don't know how much more of this Darragh can take. He is nearly 5 months old and is only 8lb weight. He is just not strong enough for all this. I really hate myself for thinking like that but this is a huge step backwards for my boy.

xzanti

My heart goes out to you and your family Egan.. Poor little Darragh, I can only imagine the pain it's causing for you all

I hope things improve soon

bp

Egan2012 wrote: »

Hi guys,
Just another update on Darragh. He got his peg surgery last Monday. He spent 4 days in recovery and came home on Friday. On Saturday Morning my partner was changing his dressing and noticed the skin wasn't healing around the wound. We brought him to Mullingar maternity hospital because it was the closest to us. The surgeon said that is quite normal and that it will heal in a few days. Yesterday morning again my partner was changing the dressing and we noticed the hole was actually bigger that the peg and any thing we were giving him threw the peg was flowing back out the hole. I said **** this and brought him straight back to Crumlin where the surgery was done.
At the moment they think the inside of the peg has gone missing and they think it could have lodged in his bowel. They are doing an x ray on him at the minute and if this is the case he is going straight in for open surgery.

To be honest guys, I really don't know how much more of this Darragh can take. He is nearly 5 months old and is only 8lb weight. He is just not strong enough for all this. I really hate myself for thinking like that but this is a huge step backwards for my boy.

Oh god you poor things. Are you and your wife ok? I am in Dublin and if there is anything you guys need just ask. There are enough of us on boards in Dublin who could bring food, clothes, company etc

We are thinking of you guys x

Egan2012

That is such a nice thing to offer. I think we are pretty much on top of everything. We just need to get this man better. I can't see what else could go wrong. He has fought off everything that has been thrown at him. I don't see what else could be thrown at him to be honest.
The supportive messages on Boards have been unbelivable and it is nice to sit down for a few minutes in the day and go through them.

yellow hen

I hope with all my heart your little boy improves soon. I can't imagine how difficult it is for you and his mam. As already said, anything we can do, please just ask. I know you don't know us but don't be afraid to ask. Keep your head up and stay positive..that's the best thing you can do for you little boy right now.

bp

You have a very determined little boy who just loves his family so much he is fighting for them.

Keep posting if you need to, we are all here to listen and give any comfort humanly possible.

Roesy

Thinking of you and your little boy. He seems to be a fighter.

therealme

I am here at work today moaning about January and how hard business is etc. etc. I came across this thread for the first time and I feel awful for the moaning I was doing when people have much more serious problems.

I am SO sorry to hear how much ye have been through and can only hope that things improve for ye soon. I really do hope there will be a happy outcome for ye - sounds like ye really deserve it.

Egan2012

Guys I just have to say that all these messages mean a lot to me and my family , and it is raising awarness for Darraghs condition. There is not much awarness out there for this syndrome.

Sligo1

My heart goes out to ye all. Poor wee darragh. Just to second what bp said... Just post if there's anything ye need.

Egan2012

Guys I have another update for you on Darragh. He is after been booked in for emergancy surgery tonight. They have found a hole in his bowel. It dosn't rain but it pours

How Strange

Just to say I'm thinking of all of you. Your little fella is a fighter. I'm not that far from Crumlin so as others have said let me know if you need anything.

Suucee

The poor wee man. Fingers crossed he'l be on the road to recovery soon. Thinking of you all ...

bp

Egan2012 wrote: »

Guys I have another update for you on Darragh. He is after been booked in for emergancy surgery tonight. They have found a hole in his bowel. It dosn't rain but it pours

Poor boy :-( we will all be sending positive thoughts

Ms2011

Heartbreaking to read all little Darragh's struggles in his short life. My thoughts are with your little fighter & also your family, may he continue to fight as hard & bravely as he has up until now x

Gmol

Thinking of you all please God Darragh will be ok.
Stay strong everyone on here is wishing your family well.

jca

That's so sad, certainly puts the silly moans and groans of my mundane life into perspective. My thoughts are with you.

Egan2012

Darragh is out of surgery thank god. They didn't have to remove any of his bowel. It's just another hectic day in the life of Darragh Egan lol

yellow hen

Egan2012 wrote: »

Darragh is out of surgery thank god. They didn't have to remove any of his bowel. It's just another hectic day in the life of Darragh Egan lol

Delighted to hear that! I hope this time he makes a full recovery. He just needs the chance to be allowed to grow and thrive.... I hope this time he gets it. Hope you and your partner get some rest tonight.

Gmol

Great news. He's a little fighter