At a loss
Are you at a loss, have a screaming baby and don't know what to do? Your not alone. Colic and reflux for babies is very common and can be frustrating.Ariyah-Mai has really been struggling and well so have we. In my previous post I spoke about how she has been fussy, vomiting and had problems with her bowels. She is congested and full of cold on top of everything, which does not help. We knew there was something wrong but no one seem to listen. We were getting told to feed her more, then feed her less. That it is colic that she just grow out of it. That she is a good weight so there is nothing to be concerned by. However it took her being so ill and submitted to hospital until they realised enough to take action.
This is so frustrating as no one had listen to us for weeks! But at least something has now been done and we know to trust our instinct and fight for our little girl.
So these were Ariyah-Mai's systomes she displayed which could be reflux or colic or a combination, which we think she has. Therefore look out for these warning signs before it gets as bad for your baby.
- General fussyness
- Hard to settle to sleep or not staying asleep
- Painful crying for hours (worse in the evenings and at night)
- Going red in the face
- Grimacing or scrunching face up
- Drawing knees up to her stomach
- Arching back and throwing their head backwards
- Swollen or bloating stomach
- Vomiting - not just spit ups but projectile vomiting across the room
- Very dry skin especially across the forhead
- Very cling
- Eirther refussing milk or wanting to suckling all the time to relieve the acid.
- Sucking hands or rubbing month and nose with their fists
- Conispation or greeny diarrhea.
- Very gassy and hard to burb
Ariyah-mai displayed all of the Above, She went from a calm happy, never really fussy baby to screaming all day, getting worse late evening and over night. She could not be put down flat and would cry within seconds. Nothing would consule her even milk. She seemed to suckly all the time, but when she did have her milk she was projectile vomiting all of it and having spit up even hours after feeding. She was just very fussy, grimacing and going red in the face, arching her back and pulling her knees up. Furthermore she was also conipated from birth which turnt to bad diarrhea.
We were at a loss, exhausted because we were getting no sleep, we were moody and snappy and just heartbroken to hear her scream like she was in pain. It would be distressing for any parent but after everything we have been through too,hear her in this much discomfort was so worrying. It made us feel like awful parents because there is nothing that seemed to settle her. It is hard to not be able to do anything, as everything we tried did not help or realieved it for half hour before all coming back. No one was listening to us, doctors, pediatrician, even in a&e. We felt alone, scared, frustrated, and just at a complete loss.
Things we tried.
We had to rock her upright to calm her which still took hours or walking around the house with her up on our chest/ shoulder. We used gripe water and infocol but it was hard to tell if it was helping when she was throwing up it along with her milk. Plus rubbing and patting her back constantly because she would not burb. Singing and talking to her or playing music which normally settled her just no longer worked. We sat her upright for feeds and for about 30-60 minutes after. She did not really like her dummy so would just spit it out to scream however a comforter, her monkey sometimes helped. We were giving her water after feeds to help constipation, as advice by doctor and midwive but other then getting rid of hiccups sometime it made her flemy and bloated.
We would swaddle her so her knees where tucked up abit to help release the gas. We also used vapor oil on a cloth on the radiators to help with the damp air and because her cold was making her snuffly. We used saline drops to help with her congestion as well as cotton buds and suckon bulb to get the muscus from her nose out. We also got a humidifier which seemed to clear the air a little. When we had a shower we sat in the bathroom with her so the stream would clear her airways. These did help her cold a lot. So at least that was being relieved, but her screaming in pain and vomiting got worse.
Things got worse.
After our last trip to a&e they advices to feed 3oz every 3hr which we did however it did not seem to settle her stomach as she was still vomiting and tensing her knees up. She was still suckling and screaming after feeds. A pediatrician at the hospital which was booked as a follow up from a&e just two days later agreed that she Was feeding too much but did not really explain anything else. He suggest dropping to 2 oz every 2 hr. However Ariyah would not wake up at 2 hr and would then go 3 hrs because it was impossible to wake her and force her to feed earlyer went she isn't ready. We were unsure whether to still give her the 2oz if she was going 3 oz. This was because it was not explained to us why they said to minimise amounts we were feeding. The pediatrician was not worried because Ariyah-mai weight was fine as she was 8lb 2oz. He said she seemed calm at the appointment, which any one with children will know that when your out, at appointment there babies are calm then get back home and it is a different story. Then medical professional do not see or realise and just think oh its normal for babies to cry. This is what the pediatrician told us.
Still frustrated and not knowing what to do. We feed her 2-3 oz every 2-3 hrs depending when she woke and was ready. Our baaby was still really struggling. And after a few days it all came back and the screaming in pain got worse. She not even old enough for pain relief or medication for cold.
On sunday 24th, whilst doing the night feeds, I was rocking her to sleep on my chest we were chatting about how heavy she was getting that after a while of rocking and calming her, our arms got numb. So we had to keep swapping between us to console her. The next day I got in from work the children I work with are all ill too and only 2-5 so I had one of them cuddled to calm him most of the day. Then scoop lifting pupils into chairs. I had some of the bigger kids on the tamopline that afternoon where I had to hold them. Hence when I arrived home to hold Ariyah-mai I thought she was lighter then she seemed the night before.
Ben had not noticed and he been holding her all day because she just cried and was so unsettled. Meaning we did not think much into it, putting it down to me being at work. She always seemed littler when I got home after lifting and pushing the wheelchairs of children in my class. Also we assumed maybe she has a growth spurt which is why she was wanting more milk and her weight felt lighter as it was more disrupted where she got longer.
However after an unsettled day Ben went to rest, whilst I tried to settled Ariyah. She just screamed for hours, only sleeping for the odd 10 mins because waking up in discomfort. She was vomiting, was not interested in feeding. Ben said she has not really had as many wet nappies as usual. We called 111 for advice and told a out of hours doctor would call us. Whilst we waited for that call, our baaby girl got worse so we Had to call for an ambulance. She went pale and had very patchy mottle skin. A rash had appeared on her chest, spreading up her neck. She would not drink much milk and just screaming.
The ambulance were worried about the colouring of her skin too, her observations (blood pressure and breathing rate where high,, whist her temperature was normal but on the lower end at 36 degrees. Her heart rate was slightly raised so they took her into hospital. When we got to a&e we were seen very quickly. They took her obs again and they were still high. The real shock was when they weight her she had lost about 2lb. This was from being weight at 8lb 2oz (3.74kg) on Friday now weighing only 6lb 5oz (2.96kg). I explained how I thought she felt light but with my job I did not really think much of it. They said because of the vomiting and lack of wet nappies that she was very dyhrated so need to tube feed her through her nose to build her fluids up. Doctors were trying to put it all down to broctalis because she had a cold and coughed every now and then. Me and ben knew it was more then this and deemarded to see a consultant to investigate more. We spent that night in a&e before being submitted to the ward the next morning.
Ariyah-mai was still being tube feed only 25mls every 2 hours. Despite it being hard to see our baby at 6 weeks old with a tube up her nose, she did seem more herself. She was not vomiting or crying in pain. Her colouring came back however she was still very pale. She slept a lot, whilst this was hard it allowed me and Ben to get a little rest as the nurses where having to do the feeds. I did get to tube feed her, which was weird because although I'm gastro peg feed pupils at work, feeding my own baby via a tube is just heartbeating seeing her so fragile.
That afternoon the consultant came to see her, finally somebody was listening to us. After explaining everything that had been going on and all that Ariyah was displaying along with the raided weight lose she agreed that it was more going on. She actually got to witness Ariyah-mai screaming and tensing in pain which as much as me and Ben can explain it unless you really needed to see it for yourself and with hearing her crying. It becomes very apparent it is not normal baby fussiness.
The consultant first said it is reflux which then is causing coilic in the evening. This is because there is a build up of acid in the stomach which comes back up into her throat causing the burning pain which is why she is screaming and vomiting. The constant need to Feed and suckling is because when drinking her milk it will relive the burning in her throat which making her reflux worse because her stomach can not handle the large values at once. Hence feeding little and often is the key to reliving reflux babies. She said it could be an allegy to formula as well but unlikely as she not been sick whilst tube feed on the same milk. But it could be an intolence as lactose free milk is thicker therefore could help with the reflux.
After 24 hours of being tube feed we reintroduced her bottle at the same amount 25ml every 2 hours before slowly uping it to 60ml by the end of the afternoon. Along with being given anti-reflux medication in the mornings to manage the acid build up. The tablets could take up to 2 weeks to work and we been give a 5 week dose to then be reviewed in 4 weeks. The weighted her that morning on the Wednesday and she had gained all her weight back, plus another 2oz now weight 8lb 4oz (3.82kg)
Now she gained weigh back and was taking the bottle without being sick we were discharge after two days in hospital. Once home we were told to up her feeds to 2 oz every 3 hr. We had the medication to give her every morning. She was still fussing and crying but much better and taking less time to calm down. She was sleeping more again which is good and her colour was back. We did continue to use gripe water and infocol to relieve the reflux whilst the meds kicked in. She was fine for a while but again did start to get fuzzy and cry again. She was a bit sick but once or twice rather then after every feed. The GP prescriped lactose free alimentum formula which is thick and does not have cow milk in. This really seemed to help but it really smells. It mades her smell but help her gas as well because we were able to burb her easier on this milk.
One other thing that was a real life saver was using a larger teat, because ariyah guzzlers her milk down, she took in so much air and was hard to burb. Even if we stopped that every oz of milk to burb her, she did not also do anything but just added to the reflux, which trapped wind and being general uncomfortable. It increased her spit ups when she did finally burb. Therefore we first thought to use a small size 0 teat to stop the flow being to fast when actually many other parents of support pages told us to use size 2 because she then should not guzzle as she gets a quick flow of milk which results in taking in less air. We were reluctant to do this because she was premmy and we thought it would then mean she got to much milk at once and would make her vomiting worse.
When speaking to my step mum and sister. She told us to use size two teats. She is a pharmacist and had to do all this last year in her degree. I always trust what my step sister says because most of the time pharmacist actually have a more broader knowledge then gp/ consultant who specialist in one area. Therefore we went and brough some size 2 teats and since using them ariyah-mai has been a completly different baby. She has not been screaming for hours, she burbs easier and does not seem to guzzle all her milk down so quickly, this is helping with the colic. Ariyah still vomits sometimes or has spit up but far less often and it is more flem now where she is getting over this cold.
We have had a complete turn around. She does still fuss but calms much more easier. She is no longer screaming in pain instead it is normal baby crying for attention, milk or change of nappy. She is back to being her happy, calm girl, playing with her toys more. We have our baby back.
The only concern we now have is gaining her weight up. She has only gains an oz in 5 days as she only weights 8.5lb when the health visitor came round on Monday 2nd. We were advice to up her feeds to 3oz every 3 hours or if she wakes early at 2 hours giver her 1noz then give her the rest at 3 hr. Basically feed on demard but not to go too much at once because we will irritate her reflux. We have a clinic appointment next Monday 9th to see how much she has gained after another week. She also has het first immunisation next Wednesday on the 11th.
I can not believe that she is 7 weeks old today, she is growing so fast and despite all that has been going on over the last few week we now have answers, as well as things we can do to treat her. She is feeling better and I am so glad she is on the mend. She has started to really hold her self up, she pushes to stand which she loves to do as well climbing up us. She is beginning to try and roll which is fantastic as she loves laying on her belly so once she can full roll her self over we can lay her down to sleep on her stomach during the day.
When she has tummy time she is reaching for toys, lifting her head as well as pushing off her toes to move herself forward. I think we are going to have a early crawler. We are so proud of our clever girl and loving every moment we get with her because they grow up to quickly. I miss her when I'm at work but love spending time with her and Ben at the weekend. This weekend we went to winter wonderland in Wimbledon where she met santa for the first time. This Christmas is going to be every special and exciting. With lots to prepare for.
Still frustrated and not knowing what to do. We feed her 2-3 oz every 2-3 hrs depending when she woke and was ready. Our baaby was still really struggling. And after a few days it all came back and the screaming in pain got worse. She not even old enough for pain relief or medication for cold.
On sunday 24th, whilst doing the night feeds, I was rocking her to sleep on my chest we were chatting about how heavy she was getting that after a while of rocking and calming her, our arms got numb. So we had to keep swapping between us to console her. The next day I got in from work the children I work with are all ill too and only 2-5 so I had one of them cuddled to calm him most of the day. Then scoop lifting pupils into chairs. I had some of the bigger kids on the tamopline that afternoon where I had to hold them. Hence when I arrived home to hold Ariyah-mai I thought she was lighter then she seemed the night before.
Ben had not noticed and he been holding her all day because she just cried and was so unsettled. Meaning we did not think much into it, putting it down to me being at work. She always seemed littler when I got home after lifting and pushing the wheelchairs of children in my class. Also we assumed maybe she has a growth spurt which is why she was wanting more milk and her weight felt lighter as it was more disrupted where she got longer.
However after an unsettled day Ben went to rest, whilst I tried to settled Ariyah. She just screamed for hours, only sleeping for the odd 10 mins because waking up in discomfort. She was vomiting, was not interested in feeding. Ben said she has not really had as many wet nappies as usual. We called 111 for advice and told a out of hours doctor would call us. Whilst we waited for that call, our baaby girl got worse so we Had to call for an ambulance. She went pale and had very patchy mottle skin. A rash had appeared on her chest, spreading up her neck. She would not drink much milk and just screaming.
The ambulance were worried about the colouring of her skin too, her observations (blood pressure and breathing rate where high,, whist her temperature was normal but on the lower end at 36 degrees. Her heart rate was slightly raised so they took her into hospital. When we got to a&e we were seen very quickly. They took her obs again and they were still high. The real shock was when they weight her she had lost about 2lb. This was from being weight at 8lb 2oz (3.74kg) on Friday now weighing only 6lb 5oz (2.96kg). I explained how I thought she felt light but with my job I did not really think much of it. They said because of the vomiting and lack of wet nappies that she was very dyhrated so need to tube feed her through her nose to build her fluids up. Doctors were trying to put it all down to broctalis because she had a cold and coughed every now and then. Me and ben knew it was more then this and deemarded to see a consultant to investigate more. We spent that night in a&e before being submitted to the ward the next morning.
Ariyah-mai was still being tube feed only 25mls every 2 hours. Despite it being hard to see our baby at 6 weeks old with a tube up her nose, she did seem more herself. She was not vomiting or crying in pain. Her colouring came back however she was still very pale. She slept a lot, whilst this was hard it allowed me and Ben to get a little rest as the nurses where having to do the feeds. I did get to tube feed her, which was weird because although I'm gastro peg feed pupils at work, feeding my own baby via a tube is just heartbeating seeing her so fragile.
That afternoon the consultant came to see her, finally somebody was listening to us. After explaining everything that had been going on and all that Ariyah was displaying along with the raided weight lose she agreed that it was more going on. She actually got to witness Ariyah-mai screaming and tensing in pain which as much as me and Ben can explain it unless you really needed to see it for yourself and with hearing her crying. It becomes very apparent it is not normal baby fussiness.
The consultant first said it is reflux which then is causing coilic in the evening. This is because there is a build up of acid in the stomach which comes back up into her throat causing the burning pain which is why she is screaming and vomiting. The constant need to Feed and suckling is because when drinking her milk it will relive the burning in her throat which making her reflux worse because her stomach can not handle the large values at once. Hence feeding little and often is the key to reliving reflux babies. She said it could be an allegy to formula as well but unlikely as she not been sick whilst tube feed on the same milk. But it could be an intolence as lactose free milk is thicker therefore could help with the reflux.
After 24 hours of being tube feed we reintroduced her bottle at the same amount 25ml every 2 hours before slowly uping it to 60ml by the end of the afternoon. Along with being given anti-reflux medication in the mornings to manage the acid build up. The tablets could take up to 2 weeks to work and we been give a 5 week dose to then be reviewed in 4 weeks. The weighted her that morning on the Wednesday and she had gained all her weight back, plus another 2oz now weight 8lb 4oz (3.82kg)
Now she gained weigh back and was taking the bottle without being sick we were discharge after two days in hospital. Once home we were told to up her feeds to 2 oz every 3 hr. We had the medication to give her every morning. She was still fussing and crying but much better and taking less time to calm down. She was sleeping more again which is good and her colour was back. We did continue to use gripe water and infocol to relieve the reflux whilst the meds kicked in. She was fine for a while but again did start to get fuzzy and cry again. She was a bit sick but once or twice rather then after every feed. The GP prescriped lactose free alimentum formula which is thick and does not have cow milk in. This really seemed to help but it really smells. It mades her smell but help her gas as well because we were able to burb her easier on this milk.
One other thing that was a real life saver was using a larger teat, because ariyah guzzlers her milk down, she took in so much air and was hard to burb. Even if we stopped that every oz of milk to burb her, she did not also do anything but just added to the reflux, which trapped wind and being general uncomfortable. It increased her spit ups when she did finally burb. Therefore we first thought to use a small size 0 teat to stop the flow being to fast when actually many other parents of support pages told us to use size 2 because she then should not guzzle as she gets a quick flow of milk which results in taking in less air. We were reluctant to do this because she was premmy and we thought it would then mean she got to much milk at once and would make her vomiting worse.
When speaking to my step mum and sister. She told us to use size two teats. She is a pharmacist and had to do all this last year in her degree. I always trust what my step sister says because most of the time pharmacist actually have a more broader knowledge then gp/ consultant who specialist in one area. Therefore we went and brough some size 2 teats and since using them ariyah-mai has been a completly different baby. She has not been screaming for hours, she burbs easier and does not seem to guzzle all her milk down so quickly, this is helping with the colic. Ariyah still vomits sometimes or has spit up but far less often and it is more flem now where she is getting over this cold.
We have had a complete turn around. She does still fuss but calms much more easier. She is no longer screaming in pain instead it is normal baby crying for attention, milk or change of nappy. She is back to being her happy, calm girl, playing with her toys more. We have our baby back.
The only concern we now have is gaining her weight up. She has only gains an oz in 5 days as she only weights 8.5lb when the health visitor came round on Monday 2nd. We were advice to up her feeds to 3oz every 3 hours or if she wakes early at 2 hours giver her 1noz then give her the rest at 3 hr. Basically feed on demard but not to go too much at once because we will irritate her reflux. We have a clinic appointment next Monday 9th to see how much she has gained after another week. She also has het first immunisation next Wednesday on the 11th.
I can not believe that she is 7 weeks old today, she is growing so fast and despite all that has been going on over the last few week we now have answers, as well as things we can do to treat her. She is feeling better and I am so glad she is on the mend. She has started to really hold her self up, she pushes to stand which she loves to do as well climbing up us. She is beginning to try and roll which is fantastic as she loves laying on her belly so once she can full roll her self over we can lay her down to sleep on her stomach during the day.
When she has tummy time she is reaching for toys, lifting her head as well as pushing off her toes to move herself forward. I think we are going to have a early crawler. We are so proud of our clever girl and loving every moment we get with her because they grow up to quickly. I miss her when I'm at work but love spending time with her and Ben at the weekend. This weekend we went to winter wonderland in Wimbledon where she met santa for the first time. This Christmas is going to be every special and exciting. With lots to prepare for.
(Written in December 2019)
Keep posted for our Christmas plans and about my upcoming surgery.
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