Hospital Notes

I finally got around to getting both my boys notes, I have had a read through them and will try to update the boys pregnancy, labour, birth and NICU journeys over the next few weeks. It's nice to finally put in some of the 'missing' information about what happened.

Some things were worse than I remember, or maybe I didn't realise how bad they were at the time? The notes were quite confronting, especially Brendan's.

It was quite easy to get the notes, I rang the hospital and they told me to write a letter and attach some proof of ID with it and they would send them out. It only took about 2-3 weeks to come through too.

Easter 2011

We started Sunday morning with an Easter Egg hunt! Both the boys loved it.













Then we went to Aunty and Uncle's place for lunch, another egg hunt and then dinner.
Was a lovely day =)

ENT Appointment!

We finally saw an ENT yesterday! We ended up going private for a consult and he booked us in to PMH so Brendan can have his tonsils and adenoids removed and grommets inserted. It should happen within the next 90 days.

I'm feeling quite relieved that this is finally happening! We still haven't be able to see a PMH ENT, that appointment is in June, hopefully he'll have is surgery by then!

The only downside is that we will have to stay down there for 2 weeks post op as we live too far away from the children's hospital. I'm not looking forward to that and I hope I can find somewhere that won't cost us and arm and a leg.

Special Needs

I'm not sure if it's denial or if it's my own way of coping, but even though Brendan is considered to be Special Needs I really don't see him as that. I mean I know what he can't do, I know he needs extra help, I know that he has a different way of doing things and I know that he perceives the world differently to most people. I think that's what makes Brendan, well, Brendan. Without those things, the hand twitching/flapping, the odd facial expressions, the echolalia, the behaviours many might see as 'naughty' those are all thing that make Brendan who he is. Some might label him a 'difficult' child, and you know throughout most days he is, but not because he is purposely being difficult but because he needs things to be just so and so do I. Brendan and I clash on a lot of things. I am sensitive to all loud sounds, where Brendan craves some loud noises and avoid others. I like to have my personal space where Brendan has no concept of personal space, I'm affectionate and like lots of cuddles where Brendan avoids them and only gives them on his terms when he is ready to cope with that. We are two opposites and he is teaching me to control my own sensory needs too.

On the topic of Special Needs, if you have a child, diagnosed or not, with Special Needs please pop over to the forum and say hi! Special Friends ~ For Special Needs and also visit them on Facebook too.

Brendan's 4th Birthday Party

Ok... so... we are doing two parties, one for my friends and kids and one for family. I need to make sure I have enough for both.

Party One (my friends and kids) Approx 10 people/kids
* Snowballs (choc coated marshmallow)
* Chips
* Crackers and Dip

* Lollies
* Party pies and sausage rolls
* Spinach and Ricotta puffs
* Fairy Bread
* OJ, water and cordial.
* Cupcakes
* Fruit Platter
* Wine for the mummies

I was just going to put some music on and let the kids play while the adults chat.

Party Two (Family, approx 25-30 people)
* Snowballs (choc coated marshmallow)
* Chips
* Crackers and Dip

* Lollies
* Party pies and sausage rolls
* Spinach and Ricotta puffs
* Fairy Bread
* OJ, water and cordial.
* Cake
* My wine, DP's beer
* Sausage's
* Marinated Chicken
* Coleslaw
* Pasta Salad
* Bread rolls
* Fruit Platter
* Jelly
* Icecream

4 salads being brought by family members

This one will be more for the family to get together lol, my boys are the only kids.

(Bolded items are the things I have... I need to buy the others)

Finally! An Update!!

The past month certainly has been a test for us, but things are falling into place now and we are in a better position now. Thank you to everyone who offered support and things for my boys during our time of need. I really appreciate it all xx

Brendan is nearly 4, yep it's scaring me too, 8 days to be exact. Well 7 days and 7 hours exactly he'll be four. He's now 13.9kg and approx 104cms tall. He's now in Kindy, four half days a week (two mornings and two afternoons) he is really struggling with being left there, not that he hasn't been left before it's just he hasn't been left there before. All new kids, new teachers and an aide (which he didn't have before), can be pretty scary for any child, especially one with an ASD. He had his hearing tested today and he has improved, his left ear is now just within normal limits.... read that NORMAL, he's never been normal. His right ear is still bad though and the audiologist would like us to be sooner than June by an ENT, and is doing what she can to get that to happen. She's a gem, really brilliant with Brendan.

Tristan had his hearing tested today too, they wanted to make sure of two things, that A) he's not following Brendan's path and B) that his hearing isn't causing his speech delay. Well he is 100% perfect. PERFECT you couldn't get any better! I am not going to bother getting him weighed this month, 2 reasons... the first being I just don't have time, so many other appointments I need to clean the house at some point! The other reason being I just don't want to. He cracked 10kg last month so I feel I can breathe a little sigh of relief. Yes he might be underweight for his height but so is Brendan.

Thanks for reading
Sally
xx

Four Years On.... It's Not getting Any Easier.

Brendan turns four next month and the lead-up to his early arrival has not gotten any easier to deal with. Last night I was looking through some of the 365 photos and one lady, a midwife, had posted a picture of a resuscitaire (a table used in delivery rooms to resus newborns) and it was the same one Brendan had been resus'd on, exactly the same one. It affected me so much that I couldn't sleep last night. It took me hours to get to sleep and I didn't sleep at all very well.

This year I am going to try and break the cycle. I am annoyed with myself that I can't get through a single day without my eyes filling with tears. I know that what happened in that room was not my fault, I know the lead-up to his arrival was not my fault, however I also know that is was my body that failed him... the very person who is supposed to protect him let him down at the most crucial moment. If his own mother cannot protect him when he is at his most vulnerable stage then what hope does he have?

I always wanted to be a mum and I think I am a good mum, most of the time, but hey at least I'm trying. No-one gave me a manual on how to bring up a child who has needed extra care from before he was even born. Even now no-one has been able to give me guidance on how to cope with the curve balls that are being thrown our way. Sure I know we have it pretty easy considering what could have happened... Brendan was supposed to be a miscarriage... at 16 weeks I was admitted to hospital in severe pain and haemorrhaging pretty severely (forget pads, I was soaking towels) they couldn't find the heartbeat and bluntly told me I was miscarriaging, I discharged myself the next day because I believed had I stayed there that I was agreeing with them and I was losing my baby... I was not going to comply! The earliest they could arrange an ultrasound was one whole week later... back then I thought that week was hard, boy how wrong was I.... the ultrasound showed one very healthy heartbeat and that I was bleeding from between the placenta and uterus wall (not good news, but still hopeful news). For a further 7 weeks I was having weekly/fortnightly appointments between OB's and ultrasounds when finally the bleeding eased off and pretty much stopped. I saw the OB at 27 weeks who concluded that I would probably have another bleed before the pregnancy was over and that it shouldn't be too much more, to not be alarmed. At 27+6 weeks I had my GTT, who knows why they sent me for the 3 hour one.... I was in the low-risk category! But that's what they did... I suffered terrible morning sickness throughout the entire pregnancy, vomiting several times a day bringing up each meal (not sure how I survived...) then they made me fast for this stupid test which only made me feel more ill. The lady doing the test told me if I vomited up the fluid I would have to drink another... oh great thanks a lot!

I never got the results from the GTT, 34 hours after I commenced the GTT my waters broke. I still remember how calm and collected I was, I had gone to the toilet and done my business, upon standing up and taking a few steps I leaked.... nothing unusual (or so I thought) I had been leaking for a few weeks, just put it down to not emptying my bladder properly. I went back to the toilet to change my knickers (and to finish emptying my bladder) yet nothing else came out, (oh well still nothing unusual) I stand up and walk a few steps and it happens again.... now I start to get annoyed, what it going on?! I repeat the process, new knickers, go to toilet and I feel a teeny bit of pressure and then a large *splash* of clear liquid (hmm that's not wee!) still I change my knickers placing in a pad and I head back out to where my mum and my grandparents are (6.30pm). My grandparents were just about to leave so I pack up the coffee cups and then see them out the door. My mum comes back in about 5-10 mins later and I tell her what had happened in the toilet and how strange it was, because I was only 28 weeks I wasn't expecting anything. My birthing classes were booked to start when I was 31 weeks (and run for 5 weeks) so I had absolutely no idea what had happened.

My mum started freaking out a bit, she told me it was my waters breaking to which I replied that it couldn't be because of how early I was. She convinced me that we had better head into the hospital to be checked on anyway because it was something out of the ordinary. We rang the hospital I was booked into and the lady on the other end freaked out as well, she was rushing about with her voice and you could really pick the panic, she told us that they wouldn't be able to see me there because I was too early and that I only had the choice of one hospital and to get there ASAP. Suppose I better pack a few things, by this time it was 6:45pm, I threw in a bag that I had been living out of at mums house (luckily I was staying with her while I had appointments as my house was another 4.5 hours away!). 7pm and we are 10mins up the road when the phone rings, it's the lady from the hospital I am booked into and she is panicky "you aren't in any pain are you?" "no" "if you start having pains come straight here and we will put you in an ambulance to KEMH" "ok" *hangs up* Hmmm maybe this is really serious? Ambulance, only one hospital in the state that will take me now??

On the trip down I was getting excited, maybe I was going to meet my baby soon? How cool is this! I'm going to meet my baby. I knew nothing of premature babies and obviously not a whole lot about pregnancy either :lol:

We arrive at KEMH at approx 8:15pm and mum and I walk into emergency, mum speaks to the lady at the desk and says only a few words "SDH were transferring us, waters broken 28 weeks". Doors fly open, one lady brings a wheelchair another is carrying files, I'm made to sit in the chair and we are taken up stairs for monitoring. That's the moment I start to think, crap this is serious.

We arrive at MFAU and are taken straight in, past a few women in the waiting area, they already had a bed for me. I'm hooked up to a few machines and a nurse comes in and takes my BP while another one does a doppler check on bub. An OB comes in soon after and tells me he needs to 'take a look' (well there goes all my dignity!) he explained that he won't be doing an internal because of the risk of infection and the fact I'm not contracting means they have a good chance to keep bub in longer. He takes a few swabs and orders an IV drip and a needle.... some antibiotics, magnesium, nefedapine (sp?) and steroids.

Sometime around 10pm a neonatologist comes in and explains the chances of survival and the complications which may occur if my baby was born tonight. This was not happening, I'm supposed to give birth and hold my baby and we are supposed to breastfeed and then go home together, what this Dr was telling me was far from that. My baby had 80% chance of survival, 1 in 5 babies die... that's all I could focus on... my baby is dead, I'm never going to get a cuddle, it's going to be taken away from me and put in a plastic box where I have to ask permission to even open the little door on the side and if it does survive it's going to have a severe disability and not have a good quality of life.

I now understand that they have to tell you these things, but at the time it makes it so hard to focus on the positives. At about 1am I am finally taken up to the ward and to my room without my mum. My mum gets let out of the hospital and sleeps in her car (a 2-door hyundai getz of all things) (To Be Continued... at a later point)

This morning I rang the hospital to request my birth notes, Brendan's NICU/SCN notes and Tristan's NICU/SCN notes. I want to know why things happened the way they did and I want to be more at peace with what happened. I couldn't get through today, but I will keep trying. This year I am going to get help, this year I have had enough of sleepless nights and crying over a birth that went wrong; a baby born so sick which I feel could have been prevented. This is the year that I become stronger and face my emotions head on, because I can do this, I have to do this, if not for me then the two precious little people who call me mum.

Thanks for reading x

Weight Updates

Had both the boys at the CHN office this morning for a quick weigh and measure.

Brendan weighs 14kg (dressed) and is roughly 104cms tall.
Tristan weighs 10.08kg and is roughly 85cms tall. Which puts him just above the 3rd %ile for weight and right up on the 75th %ile for height :o :o :o He's had a massive growth spurt! At 17 months he was 79cms and 9.66kg, at 18 months we only had his weight checked and he was 9.9kg.

Tristan has been referred on for Speech Therapy, his 18 month report showed that he was well behind for communication and he is also behind for personal-social skills. Problem solving skills are right on par for actual age. Gross motor and fine motor skills are all well above average :D

Over-all I'm not surprised, it's been coming for a while, I don't think he will need a lot of therapy... just a bit of a boost :)

Update on Brendan

I thought I would update on Brendan first, as so much has happened in the last month for him. The biggest news is that he's been diagnosed with PDD-NOS, which is also known as Autism Spectrum Disorder. I'm still waiting on the official report, which should hopefully be here early next week. It's been a long fight, and I'm glad I never gave up, I can finally relax a little knowing that he is going to get more help now. He had his 4yo needles just before Christmas so he is now all ready to start Kindy!

Brendan weighs in at approximately 13.5kg and is around 105cms tall, he won't stand still long enough to measure either accurately LOL.