1

You say nervous, I say shitting bricks

So since I’m pretty much up to day with the major events in my parenting journey so far (despite the Easter emergency department trip which ill get to one day) I can now start my posts in real time.
The title of this blog pretty much says it all…I’m officially freaking out, shit scared whatever you want to call it….tomorrow is D-day!!
We have our long awaited follow up appointment with the paediatric gastroenterologist in regards to Lachlan’s reflux condition. Why I’m so nervous is because last appointment we were heading towards him needing reflux banding surgery. He’s already had one surgery in his short time I’m not sure if mum can handle the stress of another surgery!!

While I will gladly have 2 success stories to report in that his vomiting has reduced to nearly nothing (maybe 1 or 2 times a week) and we finally have a stabilized weight which deserves a massive HOORAY!!
However, he is still regurgitating a lot, and he still has that really deep nasty reflux cough particularly at night time which are both not cool!
I always want to get his development checked out as I feel he is a little behind with his speech and with swallowing which I guess can all be out down to the muscles being under high stress from the months and months of excessive vomiting in a duration that should have been a high development period.
Oh well, no point trying to guess what the outcome will be. I just gotta put on my big girl knickers suck it up and just wait and see what they say tomorrow!!
Owwww it’s gonna be a nervous wait!

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4

A Reflux Christmas

Well the adventures of Lachlan’s first birthday party had past and his actual birthday was upon on. I was devastated that both Jamie and I were going to be at work for the day and that Lachlan would spend his first birthday in day care….then I realised he loves it there and has fun there with all his little buddies so what a better way to spend the day.  This photo was taken on Wednesday 19 December 2012, on Lachlan’s actual birthday before he was going to day care.

BDAY

Now if you have been reading my other posts and pay close attention to this picture we may pick up something different about Lachlan here.  He does not have his Nasal Gastric Tube in for overnight feeding.  You might think WOW that is awesome, he finally has had it removed he must be on the improve.  Well I really do wish that was the case, however the reality of what happened was that the day before Lachlan and I went into my work for a visit and driving back home little mister cheeky pants decided that he had enough of that damn NGT and one big yank and all the tap of his face came loose and he ripped the whole thing out of his face.  I turned to check on him at the red traffic light and I nearly had heart failure to see him swinging the tube around having a fun time with it.

Once we got home I rang the WCH to find out what to do.   We scheduled for our next follow up outpatients appointment on the Monday 24th December anyway so they suggested to just leave the NGT out for a couple of days, which was also a good assessment of what would happen to his weight without the overnight feeds) and at the next appointment with the Paediatric Gastroenterologist we could re-assess if after 2 long months of having the NGT in if we would continue.

Off we go on Christmas Eve to brave the madness of the road to head to the hospital for out outpatients appointment, the normal routine of weigh in etc with the nurses and then we go see the consultant.  At this stage Lachlan had put on about 600g since being discharged from hospital – it was so very exciting seeing some improvements in his weight.  However we were still continuing the day time vomiting and the new trend of the massive bed drenching overnight vomits.  The doctor reviewed that in the 6 days that Lachlan did not have the NGT tube in (after monkey pants ripped it out) he had not lost any weight – he had in fact gained another 50g over that period and with the NGT in the overnight vomiting had also stopped.  The Gastro concluded that his stomach was no longer tolerating such large doses of formula in the overnight feed and that is what was causing the excessive vomiting and because he had not lost any weight, and in fact gained weight, without the tube in, we were going to go between now and the next appointment with no NGT and reassess early in the new year, however if without the NGT if he had any dramatic weight losses we were to pack our pack and head back into to emergency again. And of course to continue the normal recording of his food intake and also record and monitor the vomiting STILL.

I did a small and silent celebration that the NGT was being removed!  After  2 months of constant sterilizing all the equipment and setting up the pump every night and 2 middle of the night change overs of milk it is safe to say I was ready for a break from the pump.  I did not get too excited as it was still not discounted that it wouldn’t have to go back if we started dropping weight again. 

That night we had our own little Christmas celebration with Jamie, Lachlan and I (as Jamie had to start work at 5am on Christmas morning) it was the one time we were together to celebrate, and we actually had a reason to celebrate, we had a mini break and the NGT wasn’t coming back, at least for a while

XMAS 3 XMAS 2 XMAS 4
The next day was Xmas day and it was like Santa delivered a little Christmas miracle to my little miracle baby.  Santa has delivered me a change in Lachlan’s mood!! I don’t know what happened during the sleep that he had that night but he woke up like a changed baby.  He was nowhere near as grizzly and irritable as he had been for the 3-4 months prior and this beautiful happy cheeky inquisitive little baby that we had known before his reflux flared up was back.  My boy was back!! Admittedly he was still leaving a trail of vomit behind him after any food or drink, but that was emotionally and physically a lot easier to deal with when his demeanour was a lot happier.

Lachlan and I spent Christmas day at my sister’s house with our parents and my nephew Max, it was so good to see the boys interactive and playing together and having fun.  It is amazing the bond these two little boys have given that they don’t spend as much time together as I would like. It’s like they know they are related and they just unconditionally love each other

XMAS 5

It was such a lovely day and it was such a relief after such a stressful few months to sit back and relax and watch my little elf have such a fun day.

 

Jamie joined us at my sister’s house once he had finished work to have a gorgeous family photo taken.  Words cannot express enough how much love I have for these two men in my life!! I am so grateful everyday to be surrounded by such strong, amazing men – I’m one proud partner and mummy!

XMAS 6

3

The Reflux Journey Continues

So we were finally home. I hire extended the rental period of the baby scales from Adelaide Baby Hire (who I would on a side note highly recommend) so that I could continue to monitor Lachlan’s weight.

NGT 5

We continued life as normal – complete with Lachlan’s Nasal Gastric Tube (NGT) still in. Jamie and I were still giving him 400 calories every night while he slept of high calorie milk as well as his standard high calorie food diet during the day.  The high calorie diet set out by the dieticians basically entailed using cream instead of milk, adding in butter and/or cheese to every meal and to offer finger food that was either cooked in butter or deep fried at a high heat.  He was a very high protein, high carb and high calorie diet and having 5 meals and 3 bottles a day. Lachlan was always a good eater but over the previous 3 months of vomiting he was becoming more difficult to feed and a lot fussier with what he would and wouldn’t eat.  I was cooking these beautiful delicious calorie laden meals for him to find them spat in my face or him clamping his mouth shut refusing to eat or my “ultimate favourite” just to scream at me while trying to feed him.  This was a very stressful and emotional time as we knew he needed all these extra calories to try and get him to put on some weight.

NGT 1

We continued with the regular outpatients appointments which were pretty much a mirror image of each other. The nurses used my morning weight for him, we chatted with the consultant in regards to his still constant vomiting, which was still ranging from between 20-40 times a day, then the dietician came in to review his calorie intake and his weight.  With the addition of the 400 calories while he slept through the NGT we were FINALLY starting to gain some weight. Not very quickly but at the rate of about 40g a week and given his overall intake of food it wasn’t that fabulous, but a I’d take any gain at this point.  And we always left with the same key message, we have to give him time to grow out of the reflux on his own and in the process we just have to keep monitoring his weight and his diet.

NGT 7We tried to keep an active social life for Lachlan, trying to get out of the house as much as possible, despite the many questionable looks we used to get from strangers while in public for both the NGT tube on his face or if he was covered in vomit.  Sometimes those judgemental looks completely tore me apart, thinking that they were judging me for being a bad parent – when if only they knew the extent of what I had been through to protect my gorgeous little man.  It was coming up to 3 big events;  my return to work after having just over a year off,  Lachlan’s first birthday (and party) and then Christmas.  How was I going to manage all of this as well as caring for a baby with reflux and trying to keep the house in an orderly fashion with all the additional cleaning brought about a refluxer.

In the last fortnight before heading back to work, we did some special things together. We went to have our first photo taken with Santa.

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We had lots of cuddles and special time with mum and dad.

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Lachlan’s development after a 3 1/2 month stalemate period was also starting to get back on track.  We had advanced from the commando slug movement to real crawling and we were cruising along furniture at lightning speed and well don’t even start me on the climbing!! This kid could climb like a monkey and I had to have eyes in the back of my head to watch him. 

Jamie and I were in awe of how special our amazing brave little man! He had been through so much in the first 11 months of his life and we were starting to get our happy cheeky little boy back, which was a delightful change from the grizzle monster of the last 4 months. Regardless of how many times he vomited in a day he just went on his merry little way playing doing his own thing. The resilience and the pain threshold of this little fella still to this day has me bewildered, he is such a strong little man. My love for this amazing little boy is beyond words!

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