So yeah, I sorta haven't posted in a bit, ahem.
Not sure what I am gonna unload but feel like I am overwhelmed with 'stuffs' at this point & just wanna put it all down in here so I can sort through it all.
It was 12mths since G got his ASD diagnosis last week, seems like it's all flown in a haze. I was still preparing my sweet boy for school, worrying about how it would all play out & how I was gonna cope with my little munchkin being out in the big bad world, my baby no longer being at home with me.
I can safely say it hasn't gone as terrible as I thought it could but it hasn't been smooth sailing that's for sure. And if I am completely honest I know I will have big decisions to make come the end of the year.
I can however say with pride I held my shit together on his first day & he wasn't put through the traumatising event of his mother blubbering & clinging to him. Yep I got my shit together, I'm awesome ;)
G has accomplished a lot but has also regressed on various things. He is also struggling with some of his therapies & so we are changing things out again because it simply isn't working & I refuse to put him through something just because he is 'meant to'. He has started seeing the Child Psych that H sees & hopefully that will allow him to understand his feelings a bit better because we only have 2 which is happy or angry. I cannot wait for the day for him to say he is angry with me because he is frustrated due to x, y &/ or z ... It shall be momentous !
G has had such a struggle from the get go & please don't get me wrong his struggles compared to others are minute. Even laughable I would say. But for him they have been big enough.
We had such an amazing birth. Seriously after the horrific start H & I copped I can without any hesitation say how amazing it was. Yes I could have still changed things like actually staying home & having him here where I type but other than that. Amazing.
I was on a high for days, well until my milk came in & the standard 'baby blues' hit like a tonne of bricks. I'd left the hospital 24hrs after his birth with all this confidence of how awesome things were gonna be. I'd sorta faked that the feeding was working with the midwives as I refused to be prodded like a milk cow this time round.
Instead the tears came fast & furious. Tears as he screamed & screamed. Then screamed some more. It was tears as to why this little person was not wanting to feed. I realised he wasn't sucking like he should, we had to work hard on this as it seemed he was a little slow with his sucking reflex but hey that's OK right ? We can sort that out, we can push through. And somehow we did, or so I thought.
I ended up begging for help from our local clinic nurse, we had one decent one. Only on Fridays so within those first few weeks I was getting as much help as I could. It got to the point she was out of her league so we called in the Lactation Consultant who upon understanding how desperate things were came out to the house 2 days later & even though only squeezing me in & meaning to stay for an hour, instead sat with me for 3. She was fantastic. Decided I wasn't imagining what I thought was reflux & after knowing I'd taken myself off various foods I noticed were already causing grief & seeing G dehydrated & often vomitting. She advised of the Breastfeeding Assoc, book on feeding reflux babies ( my Doula had this & sent it my way !!! ), against what was normal advised a feeding routine to see if that helped settle his tummy along with not allowing him to get so stressed or worked up into a frenzy when hungry, start pumping as all of the stress was causing havoc with my milk plus off to see the g.p for a script for Motillium for me & Zantac for him.
The first g.p we saw, well he was I thought OK at first however refused the scripts said G & I could work thru it with the feeding plan the LC had advised. We had to see him weekly due to the dehydrating issues & the fact he was losing weight. After 3wks of this it was finally G's 6wk check up & I got told things amongst others that " I just needed to feed him " in response to the fact he refused, that is was my fault. That I needed to stop laying in bed to feed him of a morning as that is stupid & he doesn't need to feed for an hour *snort* Then upon having checked G over physically including his testicles & walking over to his desk to scribble in his notes & promptly asking if G was a boy or girl saw me dress G & walk out refusing to ever deal with him again.
We saw another g.p who gave us a referral to one Paed who was also of the same idea that this was my problem, I wasn't feeding him properly or that I was doing something wrong. Formula he said.
The thing was I wasn't just fighting this out because of the whole breastfeeding thing, something was wrong with my baby. I couldn't tell you what but something was wrong with him.
He was grey, I do not kid. He was a sickly grey colour, he sweated & he had this funny smell that came from his pores. He was miserable, he vomitted. all. the. time. profusely. He had the worst bowel movements I had ever come across.
This wasn't my first baby, I wasn't overreacting. Something was definitely wrong with my baby.
I resisted formula for another few weeks until it got to the point we were syringing what little breastmilk I could pump into his mouth. He wouldn't suck on a bottle, he would barely feed at the breast, he would not wake up for hours upon hours. So I kept pumping, used a line feed & topped up as needed with formula. Syringed as necessary to hope & try to get something into him.
I was this crazy heaving hot mess in the middle of the baby aisle at the supermarket pondering what formula to try next because all I wanted was a happy baby that would feed. I tried ALL of them. Yep every single formula I could get my hands on I tried. Some made the vomitting worse which was hilarious considering even the good days were so intense I thought he would actually bring his stomach up. He could easily vomit 4 to 6 foot across a room. We won't talk about what state he could leave his cot in.
We got to almost 3mths when we decided to try another g.p one who promptly advised G needed a Paed & not only referred us on but ensured we had an appt made for 2wks later. She also started him on Zantac, this made him a little happier at times but not much else changed.
I had high hopes for the Paed & again at first I thought I had faith in him, he added in another dose of Zantac so twice a day & advised to come back in 2wks & we would make a decision then. Of course 2wks did nothing so we decided to trial an elemental formula, one totally synthetic. He gave us sample tins of Neocate which was to do us over the Christmas period until we saw him again.
It worked !!!! Not completely, I mean the kid still put the Exorcist movie to shame & his bowel movements still weren't great but he would feed. He would remain alert & he FINALLY gained weight !!!!
When we got back to the Paed & advised of the success he was happy enough so wrote out a script. However it was for Elecare. The same stuff really he said, OK fair enough.
Ummm no. No it isn't.
Well OK to be fair maybe for the average kid with allergies or intolerances it possibly is because they are both elemental so are the best options for most. Not G.
We went backwards & he got worse & worse. His bowel movements became more & more darker, almost black & he would even pass blood. His nappy area was not coping with the acid in them nor the amount he was producing, it was not uncommon for me to change him 20 times before lunch. He was forming ulcers.
The Paed stated he just needed an increase in Zantac. OK so we tried that. Nope not working.
" Well then you are obviously doing something wrong " ... Aaaaah so here we are again. Yes me, the mother. What would I know. Must be me huh ! Try solids, he finally advised. He is 6mths so that will help & against every little voice that yelled " Not a good idea Ally !!!! " I did it.
He was violently ill for hours. Just on sweet potato.
The thing was these doctors had worn me down, I was such a wreck after 6mths of seeking help I did actually start to think this was all my fault. I was screwing up somewhere obviously. Maybe I was making him sick ???
That first week of March saw one of my good friends stand beside me as we sat in the Paeds office again, I'd asked for support because the boys dad was working & I couldn't handle being spoken to like I had previously one more time. We'd seen a g.p she knew very well who took less than 5mins before he called him to advised he must see G that day no questions.
I advised of the latest, he rolled his eyes. I knew this was not going to end well.
I could tell my friend was seething with anger especially as this Paed sat advising me there was " NO WAY, don't be ridiculous " what I was saying could not be true because it's impossible. Ummm sorry dude it was & is possible !!
I burst into tears & became quite angry with him. This seemed to get his attention a little, but in reality all he did was try to pat me on the head like a little girl which made me almost want to admit failure. He advised how " mothers like me often just need to accept their baby is difficult & that he was writing this letter for us to go into hospital so that I could keep it nearby so that when those bad nites hit I could see that & know all would be OK " WHAT. THE. FUCK dude ???? Cause ya see that letter would get me through the fact I was lucky to get G to sleep at nite after changing his nappy for the 10th time & he was crying hysterically in pain, I was lucky to sleep 2hrs on a good nite, I was not coping with the fact my son would spew litres every day & his entire nappy area was COVERED in ulcers & he would sob at me. I kinda needed a little more than a letter.
The letter luckily became a weapon a mere week later.
My gorgeous friend hugged me as we left & was already on the phone to the Paed Gastro she knew trying to make us an appt. It was early March yet we couldn't get in before September. I was at a loss. She pushed for us to be on the emergency list but that could still be a few months. I tried to cling to that. We went home & re-grouped. It at least gave me a little bit of light. The following week I remember calling her at 10pm in tears yet again " what do I do, I can't let him go through this anymore ??? Should I try presenting at Syd Kids & see what happens ??? ". She urged me to do so.
So early on the Fri morning we fronted up at Syd Kids.
We of course weren't an emergency so we had to wait a bit. We had quite a few around us through that period & we just waited. We finally had our turn & I had taken in a diary I had been keeping of when & how much G was feeding, times he vomitted & dirtied his nappies plus we had two while we were there for her to view. She gagged. Heh. I admit I saw that as a good sign, surely if even a Paed Junior gagged & seemed horrified then this was good yes ? She read the letter the 'Paed' as I shall now call him wrote & asked whether he meant Syd Kids. I played dumb, I knew it was for our local. She wanted to see him feed which he was due for & he took 10mls. Upon weighing him he had lost weight again so she asked if we could just sit back out in the waiting room until she could work out what the head Paed wanted to do.
I have to admit there was another sneaky aspect of our choice of days to go into Syd Kids, not only was the letter being used to our advantage but it was Good Friday. I knew that meant she wouldn't have been able to speak with this 'Paed'. My aim was to at least get the Paed Gastro to bump us up, if I could get some thoughts until maybe him squeezing us in, in say another month to help us. My job was done.
Little did I know that this Paed Junior & the head Paed were so worried they called the Paed Gastro on his mobile !!!! This was when the whirlwind started !!!!
We were spoken to advising that G would be admitted under Dr Jackson & that he wasn't able to see him today but had instead set down a list of all the things that G would require.
Ummmm .... Errrrrrrr
First things were G was going to need an NG tube ...
OOOOOOOohhhh I wanted to run like the wind Bullseye ... Oh yes I just put a Toy Story line in there, oh yes I did !!!
My mouth dropped, cause yanno they were for sick babies ... Junior just smiled & said " Yes cause your baby is sick ". OH. My heart sank.
Had I really been right all this time & no one would listen ???
I still remember that being done like it was yesterday. G is a breath holder & wouldn't swallow plus all the pain in his oesphophagus meant it was excrutiating for him. I nearly hyperventilated through it all because I couldn't stop sobbing over my baby screaming & crying while they shoved a tube down his nose into his throat. I knew it was needed but gosh I truly never knew the meaning of Mama Bear until that moment cause when I grabbed him back into my arms I refused to let go. He cried for 2hrs. His Dad tried to take him to give me a break as I walked, paced the waiting room while we waited on our room. I growled & I quite possible even snarled to back away. Mama Bear had awoken & heaven help anyone from here on in who didn't hear me.
We finally got a room up on the Gastro Ward & put in the high dependency area. The next thing were monitors attached & what I learnt was a milk pump set up. I was advised of the tests they were going to run & why along with having Dr Jackson's Junior care for us while it was the holidays.
The first nite was weird, all such a surreal feeling ( to be honest the entire time we were there was the same, which was 2wks ) I waited to be told " we are sending you home " even as morning came I waited. Instead Dr Jackson came in himself on the Sunday & spoke with me, he actually listened which of course made me burst into tears of joy having a doctor listen but also list off various issues we'd been having because he knew it was real & knew this wasn't me ' being ridiculous '.
We were being advised it was probably a combination of things & we were going to get to the bottom of it all.
G freaked everyone out with his temperatures, he can spike some doozies ! 42 quite happily but also then plummet down around 16 for a few days which they worked out was because he was dehydrating again. We went onto Neocate which was pumped thru the NGT via the pump at small amounts every hour. He started to brighten. We started on some heavier doses of Zantac along with Losec this saw the vomitting stop while the tube was in. He was also put on Movicol for his bowel which took a lot longer to get under control along with the ulcers. Things were far from perfect but we started seeing a massive shining light & my baby really started smiling. Happy smiles.
Even in hospital on a pump he managed to lose weight, I think it was for attention by this point :P
So he had extra calories introduced to help boost him back up. We had plans from everyone it seemed.
I did know that I had to get him off the NGT, something I wonder today if I did too early but he still hated feeding & I worried that he would depend on it. As we found in later hospital trips where it was almost a joy for him to know he'd get one *eye twitch* But we did it ! After being prepared to use the pump & 'trained' so that we'd go home with it we did leave hospital without it. We trialled solids while in hospital also to much the same reaction so advised not to trial again until the week before we saw Dr Jackson again. We had monthly appts for some time trying to settle things for G & various trips to the doctors & hospital.
We found a decent Paed by the way ... Cannot sing his praises highly enough either. Dr Dunstan is fantastic.
G was diagnosed as dairy & soy protein intolerant as well as lactose intolerant, failure to thrive ( that is always such a winner to hear ! ), severe GORD ( Gastro-Osophageal Reflux Disease ) & Allergic Colitis. We also talked about FPIES ( Food Protein-Induced Enterocolitis Syndrome ) but that is a hard one to get confirmed due to it being such an unknown & there is no way to test for it at this point but Dr Jackson was fairly confident that was what triggered a lot of his problems & in many ways spoke for a lot of the above diagnoses however not all. So all we could do was manage by keeping the bad stuff out & hoping the vomitting would stop as he grew older.
For the most part it has, we still have GORD present but with a strict diet a lot of it is managed well, his bowel is still not so great. He doesn't often feel a sensation of needing to go so toilet training was oh so awesome ! We are currently working out the next plan of action for him.
FPIES can be quite scary as it isn't just feeling unwell. It can be life threatening.
This site here speaks of FPIES : http://www.kidswithfoodallergies.org/resourcespre.php?id=99
And this video here will give you some idea of what it's like **** Please note if you have a weak stomach you may not enjoy it for obvious reasons **** : http://www.youtube.com/watch?v=24nHsxopOyw
Sadly that is what a lot of parents have to do to get a doctors attention, give the child food & let them have their reaction in the doctors office.
Basically the body goes into shock which is what G had been doing. He was virtually comatose a lot of the time.
Anyways for some reason I just wanted to get that out !
