Thursday, December 29, 2011

We Didn't Dodge the Bullet After All:(

Well turns out Cooper has followed in his two big brothers footsteps, after lulling us into a false sense of security he too has also taken to refusing to feed even though he is hungry.  They do this because they associate the breast with the reflux pain that comes after a feed as well as the pain during feeding.  The pain during feeding comes because their little throat is all burnt and sore when they swallow.  

Boxing Day was the start of all the dramas for us.  Yep Coop has started to refuse to feed.  It has been building up slowly to this point for a couple of weeks now.  Unfortunately, things haven't righted themselves this time and it's just getting worse.

I think I have cried pretty much every day since Boxing Day!  I can't believe I actually thought he wasn't going to stop feeding when it had happened with the other two.  I just keep wondering how I'm going to be able to get back and forth from School and Creche and be on time, when it takes a while to get him to feed.  I guess I'll just have to take him screaming hungry!?  Karl keeps telling to me to remember that it is just noise... umm yeah a mother is not wired to be able to switch off from crying!  I guess I'll figure it out somehow.

So I will just have to say adios to a life for another 9 months and keep trying to remember the bigger picture and that if it's the worst thing that happens to him, we are very lucky.  And I know we are, he is not handicapped in anyway, he is so lovely.  But when you have a crying hungry baby who is fretting because the thing they want most is going to hurt them (how confusing must that be for them by the way?), and you have to feed them through out the day, it does get you down a bit. 

I can't go out for very long either because I have to feed him at home, in a room by ourselves, where I can try to settle him down.  I also have gone back to lying down to feed just like his brothers, I just have more control of him, I know it's bad for reflux, but it's the only way I can do it now that he is bigger and stronger.

Went to Plunket today, and his weight has started to dip from the 91st percentile to the 75th percentile.  Will have to keep an eye on that, especially if his height stays at the 91st.  With the puking and now the not feeding thing combined he will be taking in a lot less.  But that just might be him doing the Hamon boys thing.  Both Chase and Flynn started of big and are now wee things.

Well I will take a big breath and hope that the rest of the family forgive me for being so grumpy for the next wee while. 

Saturday, October 29, 2011

Coopers Fourth Week.

This week little man's reflux pain seems to have got progressively worse, waking him can hear him reswallowing and then he wakes up crying.  Often we have to change bedding that has been puked on.  Most of the time he struggles while feeding now. It is always so lovely when we come across a feed that he doesn't appear to be wrestling with the breast and crying. 

I think lots of things are at play with feeding, I think he is refluxing, my milk flow is often too fast (I have started to take him off when I feel a let down and let it spray away on a cloth, then I put him back on once it settles down and he can cope a bit better).  He also gets wind and has colic issues to top everything off.  Merbentyl does help with his colic (bubbles in the bowel). Don't you just wish sometimes they could talk and tell you what the problem was?!    
I smell of puke and milk 24/7 thanks to his constant up chucking... but that's the least of our problems:) 

I have started to use the sling in the afternoons to keep him upright for a sleep and give me some hands free time.

Despite all of this I am still hopeful that come 6wks he will still be feeding and his reflux won't be as bad given he is on Losec... crazy woman!

I am finding that I am coping with this much better so far, I know it is likely to get worse, but seeing as I've done this twice I'm not worrying as much I guess.  I know he is in good hands with Doctor Liang and I'm just trying to soak up every lovely thing about Cooper seeing as he is the last little bubba I will have in my life, and I'm not wishing the time to go by any faster.  It might be a different story in a few months time, but for right now I'm really trying to enjoy our Mini Cooper;)

Thursday, October 20, 2011

Round Three!

Well the inevitable has happened, I thought I was ready for this but obviously I still had a glimmer of hope.  I've allowed myself a little sniffle on the way home from the Doctors before I snapped out of it and reminded myself that in the great scheme of things, this is no biggy.

So Cooper is two weeks old and starting to show similar signs to Flynn and Chase in the old reflux department.  It's early days yet, but when you've been through it twice before, you know the little beginning signs to look for.  I deluded myself for a week hoping it was just gas, but little man pukes all the time, even out his nose and sometimes projectile.  He had starting looking a bit uncomfortable and started struggling with his feeds.  After a week I caved and realised that it most probably was reflux and off we went to see Dr Liang (a reflux and allergy specialist who is supposed to be the best in the country - we personally agree). 

I was still hoping maybe it wouldn't be as severe as the others, but apparently it's worse, Dr Liang said that the little opening that hasn't grown is very wide, almost non existent in fact, and the acid is almost free flowing back up his throat.  Not the news I was hoping for:(  

So little Cooper is now on Losec capsules for reflux.  We asked whether seeing as we had got on to it early if we would avoid the refusal to feed issues we had with the other two.  Unfortunately, the answer was a big fat 'no', the Doc said he would probably refuse to feed too, the Losec just reduces the acidity and avoids all the other complications of reflux like too much acid getting into the lungs etc.

So at about six weeks when his little throat is burnt enough from the acid, he too is most likely going to stop feeding and the screaming will begin.  He will stop sleeping and the Happy Hamons will not be so happy for about a year.  

Karl and I are too funny, we are still hopeful, we are now saying perhaps he will be a little toughy and just deal with the pain and still feed and not be too affected by it:)  So I will wait with abated breath to see what happens.

He also has colic so he has some Merbentyl for that which seems to be helping a bit.

We are sleeping him back in the cot which we've raised the head of to help keep everything down.  I was a little sad about that, I love sleeping with my little bubba and miss him already.  But it's better for his little throat if he sleeps raised.

Thursday, June 16, 2011

Things to do During Pregnancy.

So our Paediatrician has said that there are two things you can do whilst being pregnant, to help reduce your chance of having a Reflux baby.

Firstly, avoid stress.  This is very difficult when you are mum of two boys who fight a lot!  I also am a stresser from way back!  As my Mum says, "I'd worry if my bum was on fire and I'd worry if someone put it out again!"  That pretty much sums up my ability to avoid stress.  So I am guilty of failing the first requirement.

Secondly, in your third trimester avoid cocoa bean products.  Yes that means chocolate!  Eek, I love chocolate.  But I'm approaching my third trimester and I intend to cut out chocolate.  I did it fine when I was breast feeding, but you know it's pretty easy to stop doing something when it has immediate consequences, like a screaming baby:)


Unfortunately Reflux is hereditary, so the above just reduces your chances.  They say that if you have one Reflux baby you have a 70% chance of having a second, and if you have two Reflux babies you have an 80% chance of having a third.

Wish me luck with saying goodbye to one of the most delicious foods for a while!

Ideas for Helping a Reflux Baby Get to Sleep.

Finding it hard to get your Reflux baby to sleep? Here are a few ideas that I can remember to help get a baby, who is in pain, to sleep.  I'm sure these would work with a baby without Reflux issues too, but it is probably best not to get into the habit of assisting a baby to sleep when you don't really need to.

Flynnie out to it.  Four months old.
-       One major thing to remember is to raise the head of their cot so they aren't lying flat.  You want to try and keep that food and acid down in their tummies.  By raising the head of the cot you're letting gravity help a little.

     A wonderful way to get a baby to sleep is called the swoosh manoeuvre.  Atleast that's what I think it's called, I learnt about it five years ago and my memory is a bit hazy!  But basically you hold baby in your arms facing out, your legs apart and slightly bent, then twist at your waist and twist while saying “shshshsh”.  Works most of the time. 

     All babies seem to love quite vigorous movements.  Whether it is in a buggy being pushed over the edge of the carpet for a little bump in the road, taking them for a walk outside either in your front pack or in the buggy (remember to have the buggy seat raised, not lying flat!), or simply jiggling them in your arms or in the bouncer.  I remember when I went to the Parent Centre for the first time, seeing how hard they rocked the babies and being really surprised, I always thought you were supposed to gently sway, but my kids certainly didn't respond to being gently swayed, they liked it rough;)  So I'm grateful for learning that little tip from them.  I did have people take my babies from me and tell me they could get them to sleep, it was very thoughtful of them and I'm sure they just wanted to give me a rest, but it used to drive me crazy because I knew what they were doing wasn't going to work, and all the while my baby was getting more and more over tired and distressed, giving me a harder job to get them to sleep when they decided to give up.

     Patting them in the same place helps to settle them too, they seem to like the repetition.  

    Sometimes they just want to be close to you.  I remember for a while I slept with Flynn at night,  I would go to bed so early with him and he had to sleep right up under my armpit.  He just loved to be so close.  That didn't last long though because we all were waking each other up all night.

     When my children were over the Reflux (Flynn was nine months and Chase was one years old), then we had to work on their sleeping habits.  Flynn was a breeze, it took him one night to figure out what he was supposed to do.  But I think deep down he really was always a good sleeper, before the effects of Reflux kicked in he slept like a log.  Chase on the other hand never slept well from the word go.  He took ages to figure out the sleeping thing, he was very stubborn and it wasn't until he was about two that he slept through the night.

    All of this was very tiring for the whole family and I really don't know how I'm going to manage two children and a Reflux baby when our next wee one joins us.  Wouldn't it be lovely if he was healthy as and we got to enjoy what everyone else does:)

Tricks for Getting Baby to Feed.

Both my boys were Reflux babies that refused to feed due to associating the breast/milk with pain.  So most of my day was spent trying to get a tired, hungry and confused baby to feed despite the pain.  Luckily we did come up with a few solutions.  I have no idea what other mummys in the same situation do, but here are a few of our ideas.

Something I was told by the Reflux guru from Plunket about feeding a Reflux baby, that I discovered was very true, is that it must be all about you and the baby without any other noise or disruptions around.  It must be a very calm and peaceful time.

Karl and I like to call our first solution "Dummy to Mummy".  Get baby to suck on the dummy and put them to sleep.... almost.  Not so much that they stop sucking the dummy though.  When they are in that early sleep stage line yourself up and quickly swap the dummy for yourself.  You will find they then breastfeed.  You have to keep rubbing their cheek or foot etc gently to keep them not totally asleep and to keep them sucking.  This is a sleepy feed and therefore quite an inefficient feed – but a feed nonetheless.  If I could get five minutes out of Flynn I was happy.

My husband used to literally run around the house with Flynn in his arms to put him to sleep before a feed.  I did a lot of rocking and singing and so forth.  All of this as you can imagine makes sleep training harder later on after the reflux has gone, as they are used to being assisted to sleep. This became quite hard for us as he got older and didn’t need as many sleeps.  And that is where the next trick was discovered – distraction.

"Distraction".  Flynnie always liked to fiddle with jewellery and my cell phone (still does actually).  So I would let him play with my watch, or phone or some buttons on my top.  That would be enough for him to be willing to have a quick feed from when he was about six months old.
-       "Persistence".  As I have mentioned earlier, Master Chase would do none of the above.  He wouldn't take a dummy full stop.  He wasn't easily distracted and quite often he would wake up as soon as I had put the breast in his mouth.  All I could do with Chase is keep putting him to sleep until he would finally take the breast and have a sleepy feed.  Chase had visible Reflux so he was bringing up a bit of the small amount of milk he was getting so Plunket, the Paediatrician and I all had to watch that he never got to the 'failure to thrive' stage.  This made it all the more important to keep persisting until he would take even just a little bit.  
     If I think of any other things we did I will add to the above list.

Trust Your Gut When Seeking a Doctor.

My eldest son was a perfect baby for the first five weeks of his life.  He would sleep for four hours, feed beautifully.  I felt so blessed, it was so easy being a Mum, I was feeling so confident and I was really enjoying the whole experience.

Little Flynnie Bear with Daddy when he was newborn.
At about five weeks old he started to feed for a couple of sucks and then come off the breast crying, then attempt to attach again but change his mind and start crying again.  I had no idea what was going on, I had never heard of Reflux before, so I did the dangerous 'Google' thing and found all kinds of diagnosis from breast strike, to milk flow issues to Reflux.

I won’t go into the whole sordid tale of trapsing from one Doctor to another, to two different hospitals, being told "yes he has Reflux", "no he doesn’t", "it’s just your lack of confidence being passed on to him", "it’s just colic", "he’s a fussy eater" and so on.   

I will say however that us Mums are pretty intuitive and despite all of these comments and diagnosis, I knew it wasn’t me, I knew he was uncomfortable about something and I wasn’t going to stop until I found an answer.  

Plunket was a great help during this time, I went several times to the Parent Centre for the day just for support, to get some sleep and have someone to talk to.  It was actually quite valuable because I got to sit and listen to everyone elses problems and learn lots of different settling techniques and learn loads about babies.

After about a month or more of trying to figure out what was wrong, my husband was given a phone number of a Reflux specialist and we decided to give it a whirl, he was supposed to be the best in the country.  So off we went, he has a method where he presses on their stomach and can see if they really do have reflux or not. 

I can still remember the way my husband and I turned and looked at each other when he said, “Yes he definitely has Reflux”.  I felt so relieved (believe it or not) and my husband looked the same.  Finally we had an answer from someone who knew what they were talking about and we could get on to managing it.  We were given a prescription for Losec capsules which are way better than the liquid Losec that we previously tried.  The contents of the capsules are able to make their way to their tummy before dissolving and helps to reduce the acidity, whereas the liquid usually doesn’t make its way to the stomach in the first place.

Doctor Liang also told me the foods to avoid whilst breast feeding which are Avocado; Cocoa Bean products; Bananas; Green apples; Green Kiwifruit; Energy drinks; tea and coffee.  Based on my research I also went off Dairy; tomato based products; citrus; spices and I think that was about it.  Basically a cardboard diet!  I wanted to try everything to get out of this terrible situation I was in.  With my second son I was a bit more relaxed about my food and just went with what the Specialist said as I felt the other things didn’t really make a difference.

After being to see this Specialist I was so thrilled, I thought that was it, life was going to be fine.  Unfortunately it was not.  You see Losec just reduces the acidity, it doesn’t remove it, so because Flynn had quite bad reflux, it just lessened his pain.  Which meant that while he reduced the screaming he still had breast aversion, because he associated the breast with some pain. Some babies go on Losec and are beautifully behaved there after.  It just depends on the severity.

We did also take him for a Barium Swallow, to ensure that there wasn’t something else sinister going on.  I was not prepared for how awful this procedure is.  So be warned, there will be lots of screaming!  I couldn’t handle it, I had to pass the bottle over to Karl.  My poor little baby was petrified.

I found a few tricks to get him to feed, which were quite taxing on both my husband and myself.  I will talk about these tricks in a future post.  I will say though that it was really hard because we would have to put him to sleep to feed every single time, he would be hungry but it just hurt too much for him to bring himself to actually feed.  So putting him to sleep first was the only way we could get milk into him.

I had the added issue of have a large milk flow, so I had to lie down to feed Flynn (using gravity to slow down the flow), which as you can imagine is not what you should be doing with a Reflux baby.  They should be upright as much as possible to keep that acid down, to let their little throat heal.  But it was something we had to do so we did it anyway.  

This continued for nine months before Flynn was taken off the Losec and cleared of Reflux.  With  my second child, Chase, it went on for one year.  We noticed the Reflux creeping in at about two weeks old with him.  He wasn’t as easy to trick as Flynn either, he wouldn’t take the dummy which was vital with our ‘tricks’ for getting Flynn to feed.  And we also would put Flynn to sleep to feed him each feed, however Chase would wake as soon as I put the breast in his mouth.  So he was a lot harder work than Flynn.   

We also discovered with Chase an additional problem, that I actually wonder if Flynn had but we didn’t pick up on it.  Sometimes when babies reflux so much they lose the ability to swallow on their own (excuse my non-medical explanation!) so he also was given another medication to combat that which helped immensely.  

I also had breast flow issues with Chase so had to lie down for the full one year every time I fed him.  So as you can imagine, having to put babies to sleep for a feed as well as having to lie down to feed them, does not make me a contender for being an ‘on the go’ mum.

My two sweeties.  Chase (3mths) and Flynn (2.5yrs).
My message to you in this post is to follow your gut instinct as a mum and if you think there is something wrong, seek out a Doctor who will listen and given you the answer you know to be true.  Then trust them with your baby, do as they tell you, and know that your wee baby is in good hands.

What is Reflux?

There is a ring of muscle or a valve at the top of the stomach which usually closes when feeding has finished. When a baby has gastric reflux this valve hasn't matured properly and doesn’t close.

The acid contents of the baby’s stomach are brought up and burn the babies oesophagus. This obviously causes the baby a lot of pain.  They will either refuse to feed because they associate milk/breast with pain or they will feed all the time trying to soothe their little throats.  As the child ages this valve slowly grows.  The more upright the baby is the more the reflux decreases. So when baby learns to sit the reflux will improve, but then when they learn to crawl it will get worse and then by the time the baby is walking reflux will often have disappeared. In some cases it will improve over a longer period of time. 

Some babies vomit up part of every feed and causes the baby discomfort/pain. This is known as Visible Reflux.

Some babies rarely vomit at all, but their feed will come part way up their oesophagus and then go back down again. This may cause pain and is known as Silent Reflux.

Despite what some Doctors may say.  Reflux is not the same thing as Colic.  The two are very very different.  Quite often babies can have both as did my Flynnie.

The Crying Over Spilt Milk website has a great comparison of the two problems.  It also has a list of symptoms.  It really is a terrific website and I highly recommend having a surf around it if you have any reflux concerns.  The above description of Reflux is actually sourced from this website.

A couple of symptoms I have found through my Paediatrician and Plunket visits that aren't on the website are firstly saliva bubbling at their mouth and also after a feed you can hear them re swallow or choking.  These two are particularly helpful clues if you have a baby with silent reflux as was our Flynnie.

Wednesday, June 15, 2011

The Reason for this Blog.

Do we, or don’t we?  That is the question that has plagued my mind for the last few months.   There is an 80 percent chance of having a third reflux baby, which means an 80 percent chance of a tired, emotionally drained, grumpy family for the following year. 

How ridiculous does that sound?  Now that I have actually written those thoughts down, it seems absurd.  I'm not worrying about an 80 percent chance of losing a gorgeous baby to heart problems; still birth; cot death; cancer or any number of other terminal illnesses or life long struggles.  All I am worrying about is having a years worth of simple reflux problems!  It seems embarrassing to even say that this is my concern when others face far worse problems.

However, when you are going through the small trial of trying to nurture a tiny baby with reflux; when you have a baby who refuses to feed; a baby who constantly screams; a baby who you worry is not getting enough nutrition; coupled to the fact that you have had a years worth of sleepless nights; you can’t get out and about as easy as other mums and have a whole household who are also tired and feeling neglected, it is enough to make you just want to curl up into the foetal position as your world crumbles away.

Every day with my first reflux baby I would try and have a reality check.  I would get into the shower where I would have a chance to have a cry and feel some self pity.  It was there that I would begin my daily ritual of repeating over and over to myself, “He is alive, he is alive, he is alive.”  As I knew all too well that there are much worse things that could happen. 

As someone that spent 24 months with a child in Starship Hospital fighting cancer, said to me, “If this is the worst that happens in his life, then you are pretty lucky.”  He was right and I knew it, but it didn’t stop me feeling sorry for myself and stressed out by what had become like ground hog day.  Everyday was full of the same.  Trying to calm and put to sleep a tired baby who was in pain.  Trying to feed a hungry baby who doesn’t want to swallow and feel his throat burn.  Trying to find a way to trick a baby into taking a feed.   Trying to be a good wife and mum.  Constantly comparing myself to other mothers who would make comments that quite clearly showed they either didn’t understand my position, or thought that it was my mothering techniques that were the real problem, rather than a medical condition. 

Round two of reflux I didn’t handle as well as the first.  I was older.  I had been there, done that already.  I had another child to tend to.  I had more friends with children to compare myself to and have ‘helpful’ advice from.  I had no one that understood, except my husband, who I could really sit down and laugh and cry with about the whole situation.   

During my decision making time, I have had comments like, “Three is just as easy as two, it’s just the first six weeks that are the hardest.”  I smile nicely and make some joke and on the inside I am thinking, “Really?  You still don’t get it?  My troubles don’t last six weeks, they last a whole year!”  As my husband says, no one, other than those who have had reflux babies, will ever get it. 

This simple fact is what spurred me on to write this blog.  I would have loved to have had a something to read and feel as though someone else out there knew what I was going through, had made it through and knew that I really wasn’t a bad mother.  That in fact I was a superb mother to have gone through this and survived to tell the tale.  I think that would have helped my emotional status remarkably.  

I also think that if I do have another Reflux baby this blog will be a great outlet for me.  If I don't have a Reflux baby, then I will continue to make posts based on my experiences with my first two boys that I'm sure will give you some helpful tips on how to cope with our poor babies.

I want you to know you are a great mum and it is tough, I know it is.  But you will make it through.  Breathe.  Let yourself cry.  Accept help.  Smile at others advice and know they have good intentions, they just don’t understand.  Seek out a doctor until you find one that will help you.  And most of all enjoy your sweet baby.  Enjoy that little soft head nestled in your neck, enjoy their smell, their smiles, their cooing, because they are in fact alive.

So, by the conclusion of my introduction, I have, believe it or not, the answer to my initial question.  While there is an 80 percent chance of a number three reflux baby, there is 100 percent chance of beautiful baby who amidst all the chaos will bring us great joy that none other can surpass.   
Wish me luck!

Our Flynnie at two months old.
Mr Chase at two months old.