Mouse was born 5 days early, naturally and healthy in every way. She was 3.27kg and on the 50th centile!
From the moment my milk came in I knew we were again dealing with Reflux (my older daughter had it too). She would become upset, irritable, arching her back, vomiting, windy etc after every feed! I took her to the doctor at 5 days old to get her some Gaviscon (as I assumed that would be all we needed) the doctor sat there questioning me about my parenting skills asking me if I was remembering to ‘wind’ her and telling me she just had ‘colic’! Her first weigh in after birth she had lost 140g. Now although that is considered ‘normal’ it came as quite a shock to me as my oldest daughter had gained 105g in her first 5 days and I guess I just assumed Mouse would too! 6 days later she was weighed again and had only gained 10g... I was devastated!!!! She was still showing signs of reflux and it seemed the Gaviscon wasn’t doing anything!
On top of being unsettled she had started refusing breast feeds and was becoming irritable whilst feeding! Her big sister had always LOVED to feed despite the reflux, she was happiest attached to mum’s boob, and would fall asleep on me and used feeding as comfort! I always got the sense that Mouse only ever took ‘what she needed’ and was off! She never relaxed, never fell asleep, she was always very tense when feeding! I took her back to the GP (we were living in Westport that ran on locums so it was always someone new) who told me that there was nothing other than Gaviscon that they could give me for her! Thankfully I had done my research and knew that was not true! I demanded Ranitidine and even had to work out Mouse’s correct dosage myself! Again they told me it was just colic and that I should use wind drops! (which I was already trying, but as to be expected they weren’t doing any good!) After 2 weeks on Ranitidine and still NO improvement regarding Reflux I took her back to the GP and demanded Losec and a pediatric referral! The GP I saw was a lot more understanding and prescribed 5mg Losec per day and refereed us to pediatrics. We didn’t have a pediatrician on the coast so you had to wait for the visiting pediatrician from ChCh who came once a month I think!
Mouse's feeding issues started to become more of a problem by about 1 month old. She went from being irritable and uncomfortable during and after feeds to flat out refusing to feed! This was heart breaking!!!! As soon as I’d sit down with her and go to Latch her on she’d start arching and screaming! I tried her on a bottle of cow’s milk formula at about this time which was a disaster in every way! She literally choked down the formula and spent the next 24 hours miserable!!!! With great discussion with our local Lactation Consultant who is also a registered Nurse and ex-Plunket nurse we decided that Mouse may have a dairy intolerance and I cut dairy out of my diet and didn’t give her cow’s milk formula again!
At hernext weigh in she had again lost weight and the Midwife started to become quite concerned. She wondered that perhaps Mouse had a urine infection so tested her urine! This showed some leukocytes so she suggested we take her to the a/h docs for anti b’s! We did and he prescribed Anti b’s and after explaining Mouse’s feeding/reflux issues he made another referral, an urgent one this time, to pediatrics. He also suggested that I take her back to the GP the next day and get another urgent referral to hurry them up! Which I did and they did another referral... so that was 3 referrals in 5 weeks!
A few days later I got a letter from the district health board saying they had received our referrals and that they had classed Mouse as semi – urgent and that we could expect an appointment ‘within the next 3 months’! I was DEVISTATED at this news! I rung trying to get an apt asap as the feeding was going from bad to worse and her reflux was obviously not improving but they wouldn’t up her Losec dosage until she had seen a pediatrician! No one was prepared to give me a date to see the pediatrician so my husband and I made the decision to take her privately!
At 6 weeks old and with 1 day notice I made the 4-hour trip to Christchurch to see DR Rodney Ford. He said it sounded like reflux, told me to stop breastfeeding and put her on Neocate. He also up’d her Losec to 10mg per day, I also remained dairy free. He graphed her weigh/growth etc. and didn’t seem concerned at all despite the fact she was starting to drop down the centiles, at that stage heading to the 25th!
Once home we battled on for another 6 weeks! I didn’t stop breastfeeding as Dr Ford suggested but I did offer Mouse a bottle every night before bed and occasionally during the day if she wasn’t feeding well from me (which was often!) The bottle was just as disastrous, if not more so, than the breast and Mouse would often only take 10 – 30mls then flat out refuse any more regardless of how it was offered (boob/bottle)
During that 6 weeks we made numerous trips to the GP as her feeding had got so bad that it was not uncommon for her to go 10 – 15 hours without a feed! I was an emotional wreck and as I’m sure you can appreciate also feeling HUGE amounts of guilt for 1) Mouse’s condition and 2) my older child who wasn’t getting the time or attention she deserved from me. When we did see GP’s they all seemed more interested in my mental health, questioning me and assessing me for post-natal depression, than they did in Mouse! I got called neurotic and stressed and told I needed to ‘take time for myself’.... I didn’t have PND at all I was just a very strung out, worried mother who needed someone to listen to me! I had a very unwell child and I seemed to be the only one who cared!
By 3 1/2 months old I was so worried about Mouse’s growth/weight gains and feeding issues (and the reflux that was still at the root of it all) that I rung Nelson, Christchurch and Greymouth hospitals asking all of them to admit Mouse for monitoring and help! She was refusing feeds more than ever, was lethargic, pale and generally unwell. None of them said they could help me and all told me to go to the GP, which as I’ve said I’d done a number of times to no avail!!
I decided at around that time to give up breastfeeding and put Mouse on the Neocate full time. I wanted to be able to ‘see’ how much she was/wasn’t taking and keep a record of it to show the doctors! Once I made the choice to only bottle feed and write down her intake it became apparent how little she was actually taking! Often she’d only have 20 – 40 mls per feed, she would never ever take more than probably a max of 60-70 mls per feed (and that was exceptional and worth a party!) I found that if I ‘dream fed’ her in her sleep she would often take feeds better as I guess she was unaware! I was setting my alarm and getting up to feed her 3 hourly overnight!
After about a week of this I became more concerned than ever. Mouse was taking on average about 300 – 500 mls in a 24-hour period which is not enough when you are 3 months old! She had dropped well below the 15th centile and was heading on a collision course with falling off the bottom of the charts! She was so pale and very lethargic. She barely smiled or laughed and was clearly one very sad upset little girl! I rung our emergency department on a Sunday night not long before she was 4 months old in tears begging them to admit her to hospital, I didn’t care if I had to travel to ChCh, it could have been Timbuctoo I just wanted to be taken seriously and for Mouse to be well! The nurse I spoke with told me there was nothing they could do that night as the locum had gone home and that I should take her to see the GP in the morning! I was beside myself as you can imagine but there was nothing else I could do besides get up 3 hourly overnight getting what food I could into my baby girl!
The next morning, I went back to the GP yet again and begged her to admit Mouse to hospital. I was distraught, and cried so much the Dr again was more interested in my mental health!!!!! She called ChCh pediatric ward but they said that Mouse wasn’t ‘acute’ and they didn’t have a bed for her! She also called Nelson who said we weren’t in their DHB and they couldn’t help! I asked the Dr what I supposed to do next! She called the booking unit and managed to get me the much awaited apt with the visiting pediatrician 2 weeks from that day! I expressed my concern with the time delay stressing that I thought she didn’t have 2 weeks (all while still balling!!) I also stressed to her Mouse’s lack of growth/weight gains etc. (at almost 4 months she was still under 5kg and still wearing 0000 clothing!) her response to me was ”you’ve survived 3 months what’s another 2 weeks” and “perhaps she’s a dwarf!”... I left the doctors that day not just worried, sad, and feeling lost but absolutely FURIOUS!!! I contacted my mother in law (who lives in Palmerston north) on the way home and explained our most recent Dr's visit to her! At the time she was working as a practice nurse for a GP. She spoke to the Dr she worked for and he said that if we could get to Palmerston North he would get Mouse admitted to Palmerston Norths pediatric ward! So a few days later we headed to Nelson to catch flights up to Palmerston North!
The day before we were due to fly out Mouse took a huge turn for the worst... in a 24-hour period she’d taken less than 150mls and had also had some diarrhea plus projectile vomiting! By midafternoon on the 11th of November I was so worried about her I took her to Nelson A & E. They treated her for dehydration with electrolytes and told me she had a stomach bug! I explained her history and feeding problems, reflux, the lot with the emergency doctor and I told her I was adamant she did not have a bug and could they admit her! I was told that they could only treat the acute issue, which at that time was dehydration, and that her ongoing reflux and feeding issues really should be handled by a pediatrician who, if they thought it was necessary, would admit her themselves! I bawled to the doctor begging her to do anything she could to get Mouse admitted!!! Again my mental health was questioned, and still it was fine!!!!!
Thankfully that kind doctor listened and she went off to make a phone call to the pediatric consultant but said she couldn’t make any promises! We were left to wait for about 40 mins but when that ED Dr came back she put her hand on my shoulder and said “we’re going to bring her in, and we’re going to make her better!. Still to this day when I think of that moment I break down! I have never cried with such relief, joy, heartache or happiness all at the same time!!! I sobbed like a little baby on the doctor’s shoulder, after 4 months of no one listening or caring this one women at the end of her shift said 1 sentence that lifted tons and tons of weight off me!
So within an hour of that conversation we’d been transferred to the ward, Mouse had her NG tube put in and I watched my little girl get 100mls of food. It was the happiest moment in ages! Mouse was in hospital for 11 days. She was on 3 hourly feeds day and night and her Losec dose increased to 15mg per day.
She was only getting 100mls per feed and at first was struggling to keep it in, the first 3 – 4 days involved a lot of super projectile power chucking. The Dr said her stomach capacity was obviously a lot less and it may take some time for her to adjust to new quantities. I was so sad to realise that my wee girl could not even cope with 100mls, she had never had such a full tummy before. He said it was apparent her body was used to a lot less than this! They tested her poo and vomit and ruled out the suspected stomach bug, they came to the conclusion her body was in the beginning stages of ‘shutting down’ due to dehydration and malnutrition.
While in Hospital we saw a Speech Therapist who checked Mouse for an oral aversion and also arranged a barium swallow to check that her ‘plumbing’ was ok! As Mouse happily sucked her dummy and put her fingers etc. in her mouth they ruled out an oral aversion and the barium swallow showed no abnormalities but confirmed severe reflux! She said that it was very important to ALWAYS offer Mouse her feed orally first, allowing her to take what she would, 0 – 40mls on average, then top up via the NG tube. She also said it was important for Mouse to be sucking her dummy while having a tube feed too so she associates the sucking reflex with getting a full belly!
Mouse also saw a Nutritionist who determined exactly how many calories per day she needed not only to maintain growth but also to catch up on the growth she’d fallen behind in! Mouse was to take NO LESS than 800mls per day and was also given some stuff called DuoCal, which is basically powdered calories that were to be added to every bottle! We discussed introducing solids but I decided I wanted to take things one step at a time and sort out her milk intake first. Plus, Mouse wasn’t in the slightest bit ready for solids.
After about 6 days in hospital on the advice of a friend I took her to see an osteopath who specialised in Cranio Sacral therapy. This is considered to be ‘alternative’ treatment and is not recognised by ‘general medical professionals’. If you’ve not heard of them before they treat spinal, cranium (head) bone structure etc. It is important, I think, to see one who does a lot of work with babies as this one did. After a brief examination he concluded that Mouse’s T3 vertebrae was so far displaced and twisted he’d never seen anything so severe in a baby so young and he also said that her ‘gag’ reflex in her mouth was so far forward it was no wonder she didn’t tolerate things in her mouth! He said that the T3 vertebra if out of alignment can cause a lot of stomach upset, digestion problems and irritability. He 'adjusted’ her spine and jaw structure and told me to come back in 3 days. I think that the upset to her T3 was caused at birth, she was engaged 6 weeks prior to being born and I also went from 7cm and a posterior baby to her turning, me getting to 10cm and pushing her out all within a 5 min time frame! I think perhaps the trauma of that may have cause the damage.
The following day Mouse had one of her worst days on history... she SCREAMED the entire children’s ward down for the majority of the day! I was beside myself again just wishing my little girl would get better. I wrote the Cranio sacral therapist off that day but still decided to go back for the follow up... not holding too much hope though! Mouse didn’t see her consultant for 3 days due to him being in Australia so I hadn’t discussed the treatment with him prior to going and he wasn’t there for her bad day! The next day however Mouse woke up happy, for the first time in her life she lay on her tummy and lifted her own head up (she hadn’t been able to do this previously) She spent the day laughing and smiling! She still wasn’t taking adequate amounts of food orally but she wasn’t so distressed after her feeds! It was almost like having a different girl! I took Mouse back to the therapist the following day and explained to him about her ‘bad’ day... He immediately apologised for not warning me but apparently it is ‘normal’ for there to be a day where things seem worse before it gets better! He ‘adjusted’ Mouse again and sent us on our way wishing us all the best for the future!
The next day when her consultant was back he came to do his ward rounds and the first thing he said was “The nurses tell me you swapped the baby, who’s the happy little girl you have now and what did you do?” ... I told him about the therapist and that I understood he didn’t recognise the treatment, that it was ‘alternative’, but that I truly believed it’s helped! He was great and said that yes although it wasn’t something he knew anything about he also respected and understood that the human body is far more complex than he will ever know and sometimes there are treatments that he may not recommend but that have been proven to work. He said no harm was done to Mouse and in this case it seemed to have made a dramatic difference! We were still facing feeding issues and reflux but our little girl seemed so much happier! Her fluid intake did increase slightly but not near enough to remove the tube. We decided to keep her in for another few days for monitoring but as long as she remained the same they would discharge us with the tube in place.
So after 11 days in hospital, just 4 months old and with a weight gain of 400grams (Mouse was finally over 5kg!) She was discharged home with the tube in. We were to continue 3 hourly feeds during the day and demand feeding overnight! She was on 15mg of Losec, Neocate and DuoCal. She wasn’t 100% better we still had a battle but I felt confident that things were looking up for her!
Well once home we were facing yet more battles. As I discovered feeding tubes and little baby fingers aren’t very compatible! Mouse pulled her tube out within 24 hrs of getting home. I called the local A & E, no one was qualified to put a pediatric NG tube in. Try the GP’s. So I did, same response. I called the Midwives, District Nurses, Plunket anyone I could think of all of whom said the same thing - can’t do it! My only choice was to take Mouse to Greymouth (1.5 hours’ drive each way) to get it re-inserted by the pediatrician nurse down there. Faced with the long round trip I contacted a friend who is a nurse and asked if she’d put one in before, she said she’d put in adult ones, surely it was the same with babies, and that she’d happily put it in for me. So Mouse and I went round to her place with the box of supplies from the hospital (new tubes, PH strips etc.) and she re-inserted it on the lounge room floor! Not at all what should have been happening but I felt we had no other options! I certainly didn’t have the support in Westport from the medical professionals that I needed!
Mouse pulled her tube out every few days for a week or so and eventually I got so fed up with the situation I decided I was going to battle on without it if I could. Obviously had Mouse deteriorated I would have resumed tube feeding asap! I called up her Nutritionist at Nelson Hospital and explained what I intended to do. She discussed with me about bare minimum daily intake etc. and when I needed to put the tube back in! Mouse was to take 500mls per day absolute minimum, definitely no less than! She was to continue to have DuoCal EVERY feed and I was to attempt to give her solids to, anything that she’d take pretty much. This too was to contain a scoop of DuoCal! I knew I was going to have a hard road ahead but I felt I didn’t have the support here to continue on with the NG tube. It wasn’t a nice battle and it wasn’t easy but I feel I made the right choice for Mouse and although at times I felt awful for it I feel I did the right thing!
Mouse wasn’t interested in solids much at all. The only way I could get them in was to make them watery and syringe them into the back of her mouth while she was lying on the floor. She wasn’t yet sitting and if she was upright at all she would just spit it out. In effect I was force feeding her... of course I wouldn’t let it get to the point of her becoming upset or distressed but it was clear developmentally she wasn’t ready for solids.... but we didn’t have a choice! I feed her pumpkin, avocado and rice cereal mainly! From day 1 I was giving her 3 meals per day! As much as she would take per feed, no restrictions! None of this offer a teaspoon to start etc. usually she’d take 20 – 50mls of solids per feed... which considering her age was pretty good!
Although she was taking solids ok her milk intake was still very poor. It was only with more ‘dream feeding’ that I was maintaining her bare minimum intake of only 500mls in 24 hrs. I decided that something had to change and I choose the formula. Although it was recommended and prescribed by the pediatrician I decided to try something new for a week, it couldn’t do her any harm. I thought that perhaps her aversion to taking the Neocate may in fact be the taste. I honestly wouldn’t drink the stuff either it’s foul! After the disaster with cow’s milk formula we decided to try her on 'Goats Milk’. I did a bit of research on the net about goat’s milk and reflux and there was a lot of positive feedback about it! Although expensive ($43 per tin!!!!) we gave it a go! Oh My God, what a difference!!!!!! Instead of the usual pathetic efforts to feed before refusing Mouse started to drink on average 70 – 90mls per feed on her own!!!!!!!!!! I was so happy I can not explain in words! She started to average about 700mls in 24 hrs on her own which was so close to what the nutritionist recommended to catch up her growth I couldn’t have asked for a better outcome!
We finally saw the visiting pediatrician on the coast when Mouse was about 5 months old. Even with the hospital report and my story he said reflux didn’t exist and that she just had a case of ‘miserable’. Regarding the cranio therapist he said I’d wasted my money...When he asked if I’d like a follow up I politely declined! Mouse has not seen a pediatrician since... I have managed her condition myself!
We still battled on with solids, and she still had bad days with her bottles to. I recorded every single little ml of anything that went into her until she was about 6 months old and some days weren’t good but they were becoming less and less! By about 6 months old Mouse was showing lots of interest in her solids and I wasn’t having to syringe them into her anymore. She was eating like a normal baby! She still never drank more than 150mls of milk per feed but she was meeting her daily targets still so that made me happy... and if she was falling behind I’d just slip in an extra dream feed during the night! She still had reflux and things were still hard but I knew we had reached the top of the hill; our big battle was over!
I wrote this when Mouse was 1 she was still on Losec but we were reducing her dose. She hadn’t yet hit the tonne but was 9.5kg! I look back at the first 6 months and wonder how on earth I ever survived! How did I get through all that and without getting PND, I was screened for it enough! I totally credit the Cranio sacral therapist for Mouse’s turn around, that and Goats Milk! And also not giving into the tube! For me it wasn’t a permanent option... we had to find alternatives. As I said I didn’t always feel good about what I had to do and it wasn’t always nice... but for her it was the right thing!
Oh my gosh, what a heartbreaking read, I thank you much for rallying to our aid so quickly and I’m sorry you didn’t have a Zalie to do the same for you x