D'ya ever wonder... Just wonder?

[MiniSoksMakeHardWork]

Evening ladies. Since we're at 999 now. Was feeling reflective tonight.

Trips- in my opinion your DK should either suck it up or stay at home on his own, and you and the kids go and have a great time!

I'm not religious but I wouldn't begrudge someone their faith and right now I could do with some of that faith. I've never prayed before so pray on Apollo's behalf for me

Trips - just wish it was me and thee (and our kids can come as long as they behave themselves) going on a really small adventure. My hubby, of 35 years told me not to come home from my friend chelles house.......seems like I am cocky and arrogant......OOOOOOOOOOOOOOh who the fuck would have thought it LOL.

Bloody Derkster! Is it jealousy dya think? See I keep making allowances for dk, hes had a bloody rough time over the last 6 years and of course we dont know if and when the cancer will come back. He I know is also embarrassed using a pool etc with strangers because of all the horrible scarring from the surgery. But deep down I feel he would still be anti, its just him, he is not very sociable unless its on his own terms. And this is also where the age gap comes in, I still want to have fun and be silly, I love company. Maybe I wont when I am the same age, for now its frustrating.

Mama how is Apollo today bless him? x

Trips, have you tries talking to him about it, there's no excuse for behaving like that towards you. If he's embarrassed or self conscious about how he looks then there are plently of things he could do. You both shouldn't dismiss a holiday when there are things that can be worked out.

Now it's morning and I can breathe with DH beside me. Apollo heart rate dropped to 24bpm, he was blue, floppy and unresponsive then while the care team were working on him, he went into cardiac arrest - his heart just stopped. It took a while to get him back - longest 2 minutes of my life. however his heart rate just kept on dropping, they said he went into heart failure and I had to make the decision whether we keep on resucitating him until his temp pacemaker could be fitted or sign a DNR. They have no idea if has any brain damage and even if his pacemaker is fitted successfully they don't know the quality of his life. I didn't sign it. I couldn't. He r.arrested twice and had another c.arrest. he had a temp pacemaker fitted at 4am and was put on the ventilator his heart is doing better and his colour has returned and his gases look okay. His pacemaker op is scheduled for 5.30pm. So much for his week assessment. Thanks for all your thoughts and prayers xxx

Mama- hope that fitting of the pacemaker has gone ok, prayers still continue as we wait for news. xxxxxxxxx

Apollo is out of surgery and in recovery. The surgery had a few complications but was successful and lasted just over 2.5 hours, he gad a dual chamber pacemaker fitted. It's heartbreaking to put my son's life in some stranger's hand. Despite being debriefed about before and after op. I wasn't prepared for the amount of wires, tubes and machines. He will remain on a high vent until his heart and lungs have had time to recover. So, far he's doing well and his care team are pleased. So am I! Not out of woods yet but they're positive :)

Great! I was on tenterhooks here waiting for news from you. Lets hope for his continuing improvement.

Oh Mama how on earth are you surviving all of this, how is your dh coping?

been lingering but not had much to post really, been so quiet here.

mama, that is fabulous, well done Apollo! He is such a little fighter xx

shabs & Trips, your dhs need kicks up the arses. Trips, he hasn't really given u a proper reason for not going. I'd be very tempted to let him sulk home alone. Do u think if u booked it he would change his mind eventually? He should be proud of his scars, after being through so much! No one is going to think badly of them. Or, he could easily wear a tshirt. He sounds a lot like my dh really - just not really very sociable!

Kids are back to school today, whoppee! It has been really nice having the family time, but I do think they are getting a bit bored of being stuck in the house, especially with this lousy weather. I'm looking forward to being able to spend longer at the gym wihtout having to worry about rushing home again :)

Morning girls xx

I think surviving is the correct word. I feel drained and tired. I can't even cry anymore, I hear bad news or I see his sats drop I just think, "not again". Silly and irrational as it is I can"t bring myself to talk to him or touch. I'm scared he'll feel cold and that his little hand won't grasp my finger. When the nurses touch him I become panicky and want them to stop. Saw the social worker & counsellor and I just didn't want to talk to them. I wanted them to go away - they eventually left. For the first since they were born; DH & I couldn't comfort each other.

DH says he's fine and tries to stay positive but I know it's hard on him, before he had his 10 week to be there all the time and wasn't farto visit when he was working. Now he's back at work and 5 hours away from us. It's his first day at work and he's exhausted from being here all day. He doesn't have the time he desperately wants with Artie and Apollo and it hurts him badly. He confided in me that he's starting to feel like a part time dad towards them. That kills me but I don't know how to fix it.

Haven't slept. Can't sleep. Gotta sort out childcare today and make the 5 hours journey home to see my kids just fly back with Artie tonight. I need sleep! Zzzz

Mama- its so hard , I know. My dh was only just over a hour away when my 2 were in high dependancy, but, at times, that seemed like a million miles, especially when a crisis happened, which it did on a number of occasion, but, even then, they were not as poorly as your little lad. Later, when M had his lung removed at 2yrs, dh was able to be with me for support and help with J, I must admit, I don't know how I would have managed without him.
It will be ok in the end, and he will soon feel like a dad again when hebis dealing with his little Apollos future nappy explosions
I am sitting here feeling guilty for moaning about their behaviour after fighting so long to keep them here in the first place.

Thanks, Bubs :) I'm sure I'll be moaning when I'm home! As awful as it sounds I can't wait to pawn Artie off on DH so I can a few child free moments!

Talked to my dad today, he thinks I should step back from Apollo and the hospital and go explore the City for a few hours. It's not a bad idea but I feel like I'm abandoning him after just a big operation. I told a nurse off today for talking to Apollo. How bad is that? I feel like a jerk. However guilty I felt it was refreshing and their smiles were theraputic. K has draw a picture of Apollo with his new special "Heart box". Super adorable. Yesterday was such an emotional day but feels s little ligher today.

Also, Artie help her head up today! :)

Nice to see you, Chops! :)

Oh mama. I feel so much for you being so far away from everyone. Do make sure you let the nurses and mw etc know how you feel. Don't feel you have to carry the weight of the world on you.

We're not having a great time here with bigger at the minute. Even big has taken to copying him, snatching and hitting.

Morning girls...............not enough sleep. Hate getting up these dark mornings. Off to the first of two funerals this week, glum, at least its not raining atm.

Morning girls xx

Morning. One back to school today. Trouble isn't back at preschool until tomorrow. Alas!

That's tough, Trips. Hope the funerals go as smoothly as possible. Condolensenses to the families.

Sok, I wish mine were going to school! They don't start term until August shoot me now. Luckily DH's job is paying for childcare until July.

Apollo is recovering wonderfully. He's now off the high vent and moved onto the normal vent with only one bout of steriods. He still has an innocent heart murmur and his heart and lungs are still weak - they say he may never be in the normal range but he's responding well and the pacemaker is doing what he should thankfully as he's pacemaker-dependant! Still irrationally scared to touch and talk to him though. feel like a horrible mum.

I was petrified to love Gareth FWIW. So afraid of him - thought I would break him if I held him. BUT he didn't break and I quickly learnt to love him xx

Oh mama. I cannot imagine what you must be feeling right now. I echo shabs though. You can't break him even if you feel like the smallest touch could hurt. Talk to him if nothing else, let him know what his big sister is up to. Talk to the nurses and let them know how you feel. I'm sure they've seen it hundreds if times before. I was terrified of giving Jennifer the first bottle I gave her. She felt so small and was so bundled up. And was bigger than Apollo. And I was worried that she wouldn't know me. To be fair, she was fed such small amounts so regularly her first few days I don't think she cared who fed her as long as it came. 21 months later and I have the biggest limpet I've ever known. I swear she's making up for lost time in a very late fashion! She was only in scubu 5 days!

Thinking about it all now - some 32 years later my Mum must have worried about both boys - just like I was doing. She used to spend hours singing 'Two little boys had two little toys......' to them, and just touching them while they were in their moses baskets.

I bumped into the surgeon who did Apollo's surgery this evening - he's doing a 48 hour shift! Holy crap! I asked to sit with him and if it would be okay if I asked him a few questions now that I feel calmer and able to take things in. I bought him a coffee and he said something that stuck with me, "touch is a basic need even for the smallest of babies." So after DH kicking my butt over the phone, I kissed Apollo and said hi. Who knew that would send me into a cryfest. A much needed cryfest. I can't hold him yet but they say I can next week. Still hesitant to to more than stroke and hold his hand but I feel slightly better.

I'm glad I talk to you ladies and know someone else understands x

Just keep talking to him and touching him as much as you can do. Gareth weighed 4lbs 1 ounce at birth (38 weeks) he was sent home two weeks later from the heart ward at our local childrens hospital. By then he weighed just 3lbs 15ounces despite my milk and formula.

He fought so very hard to stay with us. Shrugged off chest infections etc but he couldnt fight anymore. I always think now that thanks to Gareth and many other children like him that babies born now with heart problems survive because of what surgeons learnt from my precious lad. I am so happy for you that your little fighter has been born in an era when so much progress has been made and where babies/children survive and live a normal life.

I hope A goes from strength to strength. xx

Shabbs........such a heartfelt reply, even now I can feel your pain still. Gareths life however short brought you love and never to be forgotten memories, however sad. It is very hard, yes probably if Gareth was born now his chance of survival would be high, and that is so hard to accept. Apollo has been on such a high rollercoaster since birth, he`s still riding Mama, just let him know your there beside him. xx