MSE Newborn to 1 year Baby Club 1

kitkatt1982

Hi all, new to site but couldn't work out how to do the control+c business must be a bit stupid lol. Getting a bit addicted to all the useful tips on here, hence being up so late :-) Just thought I'd add, if no-one's mentioned it already, my daughter who's 9 months has asthma plus snotty through teething and best thing we found was a plug in vapourisor for her room, works wonders for settling her to sleep (and keeping her asleep for a bit!!) but got to remember to change the refill every few days! x x

*Ro*

mozzyc wrote: »

Hi!! Yeh sorry, been awol. Having a bit of a nightmare with my baby boy. Since yesterday he just won't settle.Had about 2hrs sleep last night and about 3hrs night before. He keeps waking up and starts screaming and won't calm down for ages. We've fed him, winded him, changed nappy, cuddled.......he's just not a happy chappy. His temp is ok and midwives today checked him over and reckon he's fine. He's an avid hand sucker too!! And if his hands aren't searching out his mouth, they're clawing at his eyes.
But we're still learning as parents, so am sure there's a rational reason for him being so unsettled.

Feeding wise, he won't latch. Midwife tried with me today too. He seems horrified by the breast lol. But as soon as I put on a nipple shield, problem solved. So for now, instead of giving up, i'm doing that. And if he isn't getting enough, we're topping him up with SMA first milk.

We've just topped and tailed him, he was screaming throughout, so have just swaddled him and put him in his bed, and all quiet for now. At least his little hands aren't causing trouble. We've had socks and mittens on them today, but neither last!

Me - my stitches are hurting quite badly. TMI ALERT!! I managed to finally have a bowel movement the other day after 2hrs of agony. It was really painful and dreading them next!! I know my tear and cut was quite bad and its going to take time to heal, its just frustrating that it limits what I can do and feel its getting in the way of my bonding with Charlie.
Plus, when I dabbed down there today, I'm pretty sure i saw a part of a stitch on the toilet paper :eek:

Might have to make docs appointment to make sure all is ok down there. I don't want to look myself. I don't want to see how bad it is.

Hope everyone is doing well. So glad this forum is here for advice and support

Hi Mozzy
Re the screaming is he weeing and pooping enough my friend said that others got on better with aptamil than SMA which constipated them. If he is pooping happily don't worry just thought I'd mention.
Scott sucked his hand a lot at the beginning too, he used to do it when he wanted his dinner!!
Sorry your LO is so unsettled xx wondered about bottles we use avent at nite takes in less air. He also was fed more upright at the start.
Sleep suits with built in mittens are what Scott lives in!
I got stitches checked too a couple of times as it hurt so much wanted reassurance. Make sure u have enough pain relief to get through it and it will get better. Sitting was the worst hence v cushion. I was told not to bathe in anything other than water, I did try wipes but made it worse. Hugs xx the poop thing I should have had shares in whitworths prunes...

*Ro*

Hi Gilly hope LO not too bad tonite x

Aimless

koalamummy wrote: »

Aimless my daughter has never actually cried yet, (and I sometimes worry that she is actually able to) but has been diagnosed with both reflux and dairy intolerance. She had the same symptoms as your son.

Thanks Were they constant or did they come and go like his? I've started keeping notes, try to work out exactly what goes on and when. When you say upright, do you mean absolutely bolt upright, or just with head higher than tummy? Found that a struggle, I normally put him next to me to feed at night, and i've been trying to break the habit of nodding off! Having to hold him up all that time at least ensured he ended up safely in his crib but so hard to stay awake!

jenjade

Hey all, sorry I haven't updated and I can't even remember what her condition was like when I first posted so will start at the start.

From birth I have thought Ellie breathing was not right very rapid, labourd etc. And she has never fed for long. Longest feed being 15 minute health professionals put this down to all babies being different. Took her toi the doctor and called out
Health visitor when she was 3 weeks old about her breathing.
Anyway went to 6 week check and asked doctor to have another look. She looked and saw was I was talking about straightway. Listened said heart murmur I think. Rerered me to hospital said she would sent a letter she finished examining ellie and asked loads of querstion.
Anyway got home and there was a message on my answer machine can I phone docs asap. Phone she said take Ellie staight to hospital to get the murmur checked. Ellies other symptons are blochy skin that goes very grey, a cough, her lips go gret/ blue sometime.
So tuesday came to hosptial they examined Ellie sounds like murmur told us operation options said she would need a scan. Scared but it seemed like a rountine op.

Tuesday 4 pm admitted to the ward for obs. Ellie was put on a heart and oxegen montior that showed when she cries her heart rate drops and when she feeds. Ellies skin when blotchy and lips went blue while we were there so they was what I had said. Then we were told the scan guy had be paged.
And he would be coming within 20 mins thought great get scan go home wait for op appointment for the murmur. How wrong could I be.

She had her scan then we got taken to the quiet room at this point we knew something was very wrong.
Was told Ellie has a rare disorder called common articail trunk ( sorry spelt wrong) and her heart is pretty deformed to be honest. She needed loads more test and a huge op which invlves completly disconnecting the heart!! I feel apart and was convince I was losing her.
They observed over night and arranged a transfer to Bristol childrens hospital an amazing place

jenjade

We are now at bristol Ellie needs more tests before the op. She has had an x ray which showed fluid in her lungs and an enlarged heart. She has a ultra scan last night which took over 2 hours and they took over 70 pic. She needs an ECG and more xrays along with bloods and a chromosone test today before they give us details of the op
Babies with Ellies condition are normally spotted at less than a week old when they struggle to or stop breathing. Also they lose weight after birth and contnue to loss however Ellie was 10lb born dropped to 9lb 8 and is now 10lb 10 oz and she is 8 weeks and breathing unaided. She is very strong and not actually presenting herself as ill.
Babies have died having the op she is having but generally babies are ill before they come in. We have been very lucky and Ellie is a strong baby who will fight!
We are hoping Ellies op will be tomorrow as she is getting worse slowly. The op will take 5-6 hours!! And her heart will have to be completly disconnected, they have to make a new part for it. It is a huge op but they are the best in Bristol.

Just to add the last kick in the teeth when she is 4 or 5 they will need to replace the piece they put in so we will have to do it all again!!!

Life is so unfair but being on the ward with so many sick children makes you realise how lucky you are. The baby next door weighs 5 lb and was resusitated 3 times last night he screams constantly and is in pain.

Ellie is her normal self she has had this since birth knows not difference. She is not in pain, is stable and happy. She smiles at all the nurses and doctors and is loving the attention

jenjade

Now about me!! The tough bit.

Until 12 last night I had no slept since Tuesday morning when I got up at 4 with Ellie!! They want me to sleep I don't want to close my eyes though fear of what might happen. Half of me knows she has been breathing for 8 weeks she doesn't intend on stopping
However when you baby is facing the op Ellie is you don't want to miss a second with them. I did sleep from 12 until 4 but only after they moved everything so I could sleep with my hand on her belly so I feel it rise and fall.
I have never cried this much in my life. And never been this scared. If I could have the op for her I would.
Telling my 10 year old was the hardest thing and being away from her has been so hard. She hates needles and didn't want to hold Ellie but I really wanted her to have a cuddle with her while she can. My sister are coming in today to see Ellie before the op. I feel like everyone is saying goodbye to her
I am sure that is not the case but I am scared they have all given up. Me and her have not given up at all and have loads of plans. Ellie has been swimming twice with a serious heart condition she is tough!!

My patner has complelty closed off he is really scared and worried about her quality of life. We talk but it is to hard.

I don't really know what else to say. I feel better getting this all out and I am sorry I have probably made you all cry too!
I can't post a pic her put will put one on facebook. I update on facebook more so if you read some news on there please can someone cut and paste it onto here
I have not and will not be going home so using my phone.
I have not googled Ellies condition they have told me what I need t know.
Give you babies a hug hug hope you are all okay ;-)
Also if you are worried about your baby push it and persist. I knew Ellies breathing was wrong from day one!
Make sure you go to all your checks they are important this proves it.

Doglover

Jenjade, I cannot express how sorry and utterly heart broken I am for you, Ellie and your family. I'm not religious but this has made me say a prayer.

I wish you and Ellie my very very best wishes and sincere love.

Really, really hope the op is as straight forward as it can possibly be. Really don't know what else I can say. Lots of love xxx

jenjade

I will add Ellie has kept her charm and sense of humour throughout. The nurse was soothing her and said she was a delicate little flower. Ellie responce as a very loud smelly fart!! Delicate little flower I don't think so!! Lol

4nnabella

I have my fingers and toes and all other extremities crossed that Ellie's operation is a success Jenny, she sounds like a little fighter so am really hoping it all goes well for you. I can't even begin to imagine what you're going through. Will be thinking of you today. (((hugs)))