Astrids Story

This story is a member’s personal experience and opinion, and is part of their healing process. Please be aware that some of the stories on Crying Over Spilt Milk are of more severe or complicated cases of Gastric Reflux. Serious or complicated cases of Gastric Reflux are rare. If you think you may be disturbed by some content, please visit this page before deciding to read further: Infant Gastric Reflux Stories

In the months before Astrid was born, I was most concerned that our new Baby would end up with Reflux like our older Daughter had.  I didn’t think that the new Baby could have been any more difficult than the first with Reflux.  Astrid was born uneventfully at 38.2 weeks.  She latched and breastfed pretty much immediately, which was fantastic as the third stage of labour turned to custard with a Retained Placenta despite all lines of drug treatment and subsequent large PPH, which meant a Helicopter ride to the Base Hospital for surgery.  Astrid was left with her Dad and faced a 2.5 hour drive to the Hospital at about 4 hours of age.  She was fantastic and pretty much slept all the way!  When we were reunited just after 11pm, she was tucked into bed with me, latched and fed for most of the night.  Over the next 3 days she pretty much breastfed all the time, but was quite settled despite this.  BUT she would not stay asleep if put into her bassinet, and would only sleep snuggled up with me.  For the next 4 days that we were home, she became more settled and was feeding 3 hourly in the day, but cluster feeding all night!  At this stage I thought that we were going to have a settled non-reflux baby!

Day 8 onwards became a complete nightmare – if someone had told me that this would continue for many months, I don’t think that we would have coped.  At this stage our other Children were aged 10.5 years and 3 years.

Astrid started to feed more and more frequently, and if not on the breast, she would just scream, and generally nothing would calm her down, apart from the breast.  She started to pull on and off the breast whilst feeding, seemed to have really bad wind, and had excessive weight gains.  My LMC was fantastically supportive, and at this stage we both thought that we were dealing with Reflux and wind.  A few days before Xmas, when Astrid was 11 days old, I took her to the GP and begged for Omeprazole (as we battled to get this for our other Daughter and when we did, it was like magic!)  Reluctantly the GP gave Astrid a script for Omeprazole Suspension.  I was told that if we didn’t see any improvement in 3 days, then we should stop giving it.

We tried for 3 days without any change.  Xmas came and went in a blur and she continued to become more unsettled.  I was willing to try anything to try and settle Astrid and for us to get some sleep.  If I managed to get a total of 2 or 3 hours of broken sleep a night, it had been a good night.  I ended up bedsharing with Astrid just to get some rest (GP recommendation), we ensured that we had eliminated as many risk factors as we could – she would be latched to the breast all night, but started to spill lots, which would mean clothes changes for us both through the night and numerous towels to try and save washing the bed linen every day.

Just after Xmas, as things just seemed to continue to get worse, our LMC sent us back to the GP for a check-up in case there was something wrong.  We were told it was Colic and to try Gripe Water.  (We already had Infacol drops which did not help anything).  The Gripe Water, also, made no difference.  On New Years Eve, I arranged a Courier to pick up a baby hammock from a Family Member on New Years Day Morning, so that we would have it later that day.  I thought that this may help with settling and sleep.  On New Years Day we took the kids out for the afternoon on a four wheel drive track, and Astrid slept through the whole trip – just waking once to breastfeed.  The bumpier the better!

The hammock didn’t help to begin with, things just kept getting worse.  Astrid’s poo became runny, green and frothy.  I had advice from LLL as well as the LMC – we started block feeding (up to 6 hours in a row on one side), and pumped off foremilk, so as to decrease the amount of Lactose that she was getting.  I also went dairy and lactose-free for a month or so, but no change!  We also had appointments with an Osteopath (who gave Astrid Probiotics), but no change also!  Rhuger Drops were also Posted from a Pharmacy in the City, but, no change!

Our Plunket Nurse visited, and her advice was very similar to LLL and our LMC’s.

I hired a double pram so that I could spend much of the day pushing Astrid and her older Sibling on the Rail Trail – Astrid didn’t sleep, but the bumpiness on the Trail seemed to keep her settled.  One day, between my Husband and I, we pushed the pram for about a total of 10 hours!  Not easy when we were getting basically no sleep at night and I was still trying to regain my Health after my PPH.  We also had great Family Support – which helped heaps – I dread to think of what would have happened if we didn’t have supportive Family living locally.

We were then put onto Ranitidine by the GP and were told that is she didn’t improve in 2 days, that we would have to go to the City to be seen by a Paediatrician.  No change, so off we went to the Paediatric Assessment Unit (2.5 hour drive away) – by this time Astrid was about 7 weeks old.  We were hoping for a magic fix.  We ended up being admitted for two nights.  On the first night we were the only ones on the Ward.  I felt like an incapable Mum that was not coping.  However the Nurses took Astrid whilst I had a shower – they had her asleep on them for about 20 minutes and then she woke and screamed and screamed and screamed with her knees pulled up.  They instantly recognised that she had Reflux.  That night we propped her cot and for the first time since birth, she slept just over 6 hours!!!  We had a Lactation Consultant visit a couple of times – feeding reclined to decrease the flow rate of the milk, so as to decrease gulping and wind, we were also advised to stop pumping off the foremilk, but to continue block feeding.  The Nurses made me leave Astrid on the Ward screaming and “go shopping”.  I wandered the streets for an hour as my Husband had to go home to look after the other kids.  I was in no state to “go shopping” but left the Ward as instructed.  Second night, she slept OK, but not as well as the first.  On discharge, we were advised to continue Ranitidine and the Probiotics and see how we went.  They also gave us a Pacifier, which she wasn’t too keen on.  First night home, we kept the routine the same, but she reverted back to her old self, being in a general 24 hour period, she was lucky to sleep 3-4 hours in total (broken sleep).

We have a photo of my Husband sitting outside with Astrid giving me a break to spend time with our other Kids before our evening cluster feed.  My Husband was wearing earmuffs (because she was screaming so much) whilst he was jiggling Astrid and trying to calm her!

About a week later, the GP put Astrid back onto Omeprazole Suspension.  About this time I first looked up the Crying Over Spilled Milk Website (the Nurses on the Paeds Ward had given me the Brochure).  I begged the GP for Omperazole Granules, but was told that they were not indicated in a Baby.  About another week later after yet another visit to the GP, we ended up back in the Paediatric Assessment Unit.  They wanted to admit Astrid again to trial thickener (given before her breastfeed).  The Doctor we saw told us that she was probably just a “fractious baby”.  I fought to be able to take her home (as a Health Professional with experience/training in breastfeeding etc I felt like it was better to keep her in her familiar environment with what routine we had).  We took her home and the thickener made no difference.  Our Discharge Summary said “Probable Reflux” and we were also told that she had Colic.  Around this time, she started to sleep for short periods in the hammock, providing we constantly bounced it.

Just before 12 weeks, we stopped wrapping Astrid and she went into a sleeping bag.  The first night she slept 8 hours in a row, but this was a one off, and the next night reverted back to not sleeping much at all and lots of screaming.

When Astrid was nearly 3 months old, she still hadn’t changed and would spill a lot, and she was really distressed when spilling.  At times it would projectile as far as half a metre (but not projectile in the medical world of at least one metre).  The GP gave us Gaviscon and also Ranitidine to try again.  We also had another Referral to the Paediatrician, but this time to the next Outpatient Clinic locally, however there was a glitch in the system and the referral was not received and so we had to wait another 6 weeks to be seen (which is a long time when nothing seems to be working!)  At this time I requested an US Scan to check her Pyloric Sphincter – we got this fairly quickly, but showed that all was normal.

At just over 4 months, we saw the Paediatrician.  We were basically told that she did have some Reflux, but much of the issue was behavioural and that most Babies start to grow out of Reflux at around this age.  The Paediatrician had a look in the back of her mouth and advised that she had no damage caused by the Reflux, and that we should start solids as soon as possible, as they should stay down being a thicker consistency than breastmilk.  I left this appointment with mixed feelings.  We started some Solids and Astrid would take several spoons of Pureed Fruit.  Around this time I started back working Casually.  Astrid would not take a bottle and would have to be brought to me by Family to feed.

Over the next month or so, Astrid started to get real chesty colds, that would last for ages and despite many GP visits and antibiotics – they continued.  She also got a gastro bug that lasted around 10 days.  She was still not sleeping much at night before or after this, although we persisted with settling her in her cot, that had the head raised via the feet, numerous times a night.  By 3 or 4am, my Husband would cuddle up with her in a bed in her room so that we could all get some rest.  I couldn’t do this with her as she just wanted to be latched on and would then become unsettled and the spilling would be worse.

At just over 6 months of age, I was speaking with a Colleague, and she suggested that I try and get a Private Appointment with a Paediatrician that had a really good reputation and travelled to our town for appointments.  I phoned and found out that the next Clinic was the next day!  I begged for an appointment as there was one slot left!  After phoning the Paediatrician’s Rooms several times and begging, they finally agreed to give Astrid an appointment as long as I organised the Referral info from the GP.

This appointment was fabulous.  Astrid was diagnosed with GORD and probable dairy and lactose intolerances.  Without asking for Omeprazole Granules, we were offered these and given a script!  I was advised to go dairy and lactose free and we were also given a script for Pepti-Junior Formula.  We felt like there was hope!  Astrid by now was taking the pacifier and we found this useful after breastfeeds to decrease spilling because she was sucking and also for use at night.  We tried her on the Pepti-Junior, but she wouldn’t take any of the 3 brands of teats we had.  I managed to order on-line some latex teats that were the same brand and shape as her pacifier, however she took a few weeks to start taking a small amount of the Pepti-Junior (30ml).  She also got another gastro bug around this time.  While I was at work one day, Astrid took 100ml of Pepti-Junior from my Husband, however every time she had the Pepti-Junior, her spilling would get worse.  We were then given a script for Neocate.  After the gastro bugs, Astrid refused Solids (both on the spoon and finger food).

A 7 months I got a Permanent job and my Husband stayed home.  During the week before I started, my Husband would sleep with Astrid and she could go 6-8 hours without a breastfeed over night.  Although he had to constantly settle her each night.  As she wasn’t taking the Neocate yet, was being breastfed about 8 times in a 24 hour period, and was refusing solids after the gastro bugs, the plan was that my Husband would drive the 60km round trip to my work each day so that Astrid could have a Breastfeed.  This happened on the first day, then on the second day they never came – Astrid was taking the Neocate!  I went from breastfeeding 8 times a day to once a day (from one side), so as I still had some breastmilk if we required.  This isn’t the safe way to wean (for me), however only once did I have to put Astrid to the other breast to relieve the engorgement.  I was careful to monitor myself so as to not cause an infection.  We would have our one breastfeed in the morning snuggled in bed before I went to work.  After a month, Astrid refused the breast, she was about 8 months old.  She was spilling less on the Neocate, and instantly was more settled during the day and could be put down on the floor to play.  It was fantastic that she was having some happy times.  However, at night, she was waking numerous times needing to have a bottle or be settled – we generally had to settle her between 30 and 50 times a night – the exhaustion was continuing!  The odd night she may have done a 4-5 hour sleep in a row.  We saw the Paediatrician again to discuss sleeping and solids, we were doing most things that were suggested, but were really grateful for the support and encouragement given.  She would only sleep during the day being constantly bounced in the hammock (which is what I am doing as I type this Story), and at night in her cot she would only settle wrapped like a newborn.

We stopped wrapping her and she continued to wake heaps.  Suddenly when she was 9 months and 1 week old, she started sleeping for 4-7 hours in a row for her first sleep at night (going down about 7pm) and would wake and settle herself, and if she didn’t it generally meant she was hungry.  She would then have a bottle and go back to sleep in her cot and would wake maybe again for a bottle or sometimes would sleep through until between 6am and 7am!  This continued for just over 4 weeks, and then one night when she was about 10 months 1 week old, she slept 7pm to 7am, waking a couple of times and self settling.  The next couple of nights, she was up once to feed and then we had a 7pm to 6.30am!  Then the following night she was up twice to feed.  During the day, she is happier and needs less sleep, but will only have a decent day-time sleep if constantly bounced in the hammock.

It has been a tough 10 and a half months for our Family.  The other kids have been really patient as we are like the ‘Noise Police’ when Astrid is asleep, and we have been tired and grumpy a lot of the time.  Astrid has just started to take Solids in the last week – we have had lots of advice from Plunket about Solids also which has been helpful.  We are taking one step at a time with Solids, she loves pureed mango and banana – in the mornings I slip some baby museli into the fruit.  She enjoys dairy and lactose-free finger foods, however we are not sure that she actually ingests a lot of these.  We are making meal times positive and fun so as to encourage her and not give her negative experiences.

Astrid still has her cot propped, has 10mg Omeprazole Granules in the evening after refusing the morning dose and still spills.  This week she started crawling.  It has been a real team effort to get through this.  Some Friends have been supportive, but others have given up on us, as we haven’t been able to take Astrid out much, and they don’t understand GORD and the high needs of these Babies.  We have been subjected to unhelpful comments at times when out with Astrid (when she would scream), thus part of the reason for not taking her out much.  Now, she enjoys going out and loves to see what is going on.

We are beginning to enjoy her more now that she is happier and we are getting some more sleep.  We know that she will have her ups and downs, but feel like she has turned the corner and feel lucky that we have a healthy wee girl.  Finally her chesty cold that has basically been present since April, has just cleared.  We hope that by sharing this story, that it gives hope that things do improve and that Parents having to deal with similar situations are not alone.  We didn’t really enjoy her as a Baby, but we are really excited about the milestones to come of our last Child, and focus on these, rather than feeling ripped off that we didn’t have the chance to enjoy her as a Baby.


Comments

Astrids Story — 3 Comments

  1. Thank you so much for your story. It just shows you should never give up.

    Just a few notes:
    You always make lactose in your breastmilk even if you are lactose/dairy free but if you are dairy free there are no cow’s milk protieins in your milk.
    Fruits are acidic and often upset reflux – but each baby is different. GRSNNZ recommends avoiding gluten (wheat, oats, bayley and rye) until one years of age.

    We look forward to an update and hearing that Astrid is Omeprazole free!

  2. Wow, time has passed since we last posted on here. When Astrid was nearly 11 Months old she stopped spilling, so after about a week we decided it was time to wean her off her Omperazole and flatten out her cot. Day 3-4 off the medication, we noted that she started to gulp alot, I had my concerns that she may be showing signs of Silent Reflux. Day 5 – We had her up all night screaming and gulping, so back onto the evening dose of Omperazole, which took about a week to start to settle her down at night time, and then she was up just once a night on the good nights. Astrid would now spill very rarely, and usually when she had something with dairy in. On the eve of Astrids First Birthday, she slept right through the night for the fourth time ever – we were really excited by this. On Boxing Day, I decided that we needed to stop bouncing her in her hammock for her day time sleep. Instead (as I was on Leave from Work), I walked her most mornings and afternoons and she would generally sleep for 20-40 minutes each time, which seemed to get her through to bedtime OK.
    Today, Astrid is nearly 15 Months old, since New Year her sleeping has been quite eratic, even with a routine that she knows. She has finally discovered that she loves food and we are slowly working through the textures with her. Just in the last week she has started to tolerate some chunky foods and also loves fingers foods. Finally she will also drink water from a sipper cup! She is still on the Neocate, however she is down to 3 bottles in a 24 hour period, which is a real achievement for her. She still has her evening dose of Omeprazole. The biggest achievement is that her Dad has managed to get her to have a morning sleep in her cot each day. We still have to put her down quite sleepy, however, we feel that it is better than letting her cry, as she is a Child that could cry for hours and then would take a lot longer to settle. She goes to bed at 7pm each night, and we still can’t predict her waking pattern, however we are getting some more sleep, but could still do with some catch up for the last 15 Months!
    Hopefully by sharing our Story, we hope that it may give other Parents some hope that things do improve, even if very slowly!

  3. Astrid is now 17 months old and has been off Omperazole for 10 days – and no signs of the silent reflux! She is eating most foods and we are trialling some dairy in her diet. She is now down to one (and on the ocassion 2) bottles of Neocate in a 24 hour period. Her sleeping has been very unsettled for the past 7 weeks now – she grizzles in her sleep and this will go on for hours at night and wakes the household. We are working through this with the support of our GP, although nothing seems to be helping. Maybe it is teeth, or is she dreaming? We also stopped trialling diary for a week to see if that would help, but no change. Despite this, during the day she is a happy wee girl that loves to explore her world and is more into climbing and exploring than our other two children were at that age. She only has a short day-time sleep as we have found that this has helped slightly with night-times. We will continue to deal with each night as it comes. Astrid loves going to bed at night and knows when she is tired and ready to go to bed – that is reassuring for us as Parents despite what goes on during the night. Hopefully one day soon we will get some settled nights!

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