Colic/ reflux/ intolerance?

[Glove20]

My baby was born premature at 32 weeks, she progressed to having bottles- donor milk/ cow and gate Nutri-prem in hospital; she also had my breast milk for her first week or so (tube fed) until I went onto medication and had to stop giving the milk.
She came home nearly 5 weeks ago. Initially she was different to in hospital in that we couldnt get her to sleep in basket whereas she was sleeping in cot in hospital fine, although I do think this was changing slightly just before she came out. I appreciate maybe she has now become more self aware. I know they stopped erythromycin 2 days before she came home which was for gut motility. She's on dalivit, sytron, folic acid.
Since being home I've been breast feeding her via expressing in bottles, trying to get better at actual breast feeding in last few days.
The first couple weeks she would only really sleep being held and made all kinds of grunting straining squeeling noises particularly when on her own in basket.
Things have gotten a LOT worse in the last 2 weeks- she is just so unsettled practically all the time and its really breaking my heart.
All I can say is she is ALWAYS straining and going red in face/ trying to pass wind/ bowels. She does do several dirty/ wet nappies daily.
She seems to have excessive wind, sometimes farting so much but then she is still unhappy after it.
She has frequent hiccups and did in hospital, quite often after feeding. She occasionally spits up a little but this doesn't seem to bother her, however at times she does have a wetness in her voice and I wondered if she could have silent reflux.
The worst part of it is she just seems so unhappy and not content. In the first couple weeks at home she would sit with her eyes open looking round for a while and it was lovely, now this is so few and far between and seems to quickly return to her crying/ straining again.
I've been wondering if its the breast milk as she seemed fine on formula in hospital but then everyone has said this is unlikely.

In the last week I've noticed more mucus in her poo, I put it down to trying colic remedies colief/ infacol but it seems to have continued even several days after stopped them unless it can take longer to get out system? She feeds OK but its hard to know when shes hungry as she crys randomly at different times anyway. We tried carobel initially on advice of GP as thought could be silent reflux- which constipated her, then GP felt it more likely colic but the remedies haven't helped.

Now also in last week she has these spots on face- see picture. I don't know if its related or not.
I am really struggling with current climate at moment and not being able to access normal health visiting services etc, also fear of going out and coming into contact with this virus.
I've had lots of phone calls but everyday she is just the same, and its really getting to me. Plus as she wont sleep at all in her basket, we have to take in turns to stay up all night and hold her which is also just terrible.

I feel like I'm trapped as I cant freely and confidently take her to doctors/ get help at the moment. Although she does have 8 week check coming up next week so I will ask again.

My question is though, yes she is straining and bringing knees up all the time which could be colic/ gas related I'm sure but it is affecting her ALL the time, can this be normal?
How likely is it for her to have an intolerance or something given that she had cows milk in hospital fine.
Feel like I'm going mad just thinking what is it everyday.
On the plus side she is gaining weight fairly well I think - I know a lot of gp's don't really care as long as they are gaining weight.

Please advise/ help anyone.

* Might I add- I say she feeds ok, but she does squirm around a lot sometimes and really resists me winding her. Sometimes coughs on the milk as if shes not concentrating on sucking- usually as straining so much at the same time.
Sorry so long.

That sounds tough. How far past her due date is she?

I would say, having had full term babies and a prem, that “newborn” and younger are sleepy and contented but when they get to a couple of weeks past due date they often get more fussy and demanding. It’s like their brains are waking up.

Do you use a sling during the day? I found it really helped to carry my preemie in a stretchy sling. It seemed to loosen the bubbles and comfort her. I went to a sling consultant to learn how to use one safely as she was only 4lb when she came home.

If you are at risk of falling asleep holding her then please look up safe co-sleeping. It’s not advised for preemies but it’s safer than accidentally dropping off at 3am in an unsafe position. I used a side sleeper cot and left my hand on the baby to settle them.

Someone may be able to give more advice on bottle teet types. My dd was better on the breast as she was less gassy that way.

Hope it improves soon. It sounds really tough but imo it’s “normal baby problems” rather than preemie related.

I feel like I could have written your message! So I wanted to let you know it's not just you and yes I think it can be normal - as in not necessarily something to worry about - but worth discussing at your 8 week appointment.
My daughter is nearly 7 weeks and has been exactly the same.

• straining, writhing around and grunting
• coughing, sneezing, sounds mucusy
• always hiccuping and wet hiccups that sometimes sound like burbs or include vomit for the first few hiccups
• sometimes really sick but not always
• Really gassy
• Occasional bits of mucus in poo
• Would only sleep in my arms. Wakes herself up in discomfort when put down in crib.

I EBF though very occasionally with expressed milk.

I have tried infacol, colief and gaviscon. Colief no help, infacol I think has helped release trapped wind a bit, gaviscon helped with the vomiting but made it harder for her to poo which made her more uncomfortable.

I don't know how long you tried the infacol for but it takes about a week to have much effect.

I have also suspected cows milk intolerance so stopped dairy in my diet about 10 days ago. I have seen improvements with this. It may just be coincidence and she is growing out of her issues as her digestive system develops. She was just 2days pre-term. As you were really pre-term your bubba may well take a bit longer for their digestive system to settle down. But she now has these issues for fewer amounts of the day and mostly between about 3am and 8am.

With the sleeping (or lack of) I finally resorted to having her in my bed. Read up online how to do so safely. I now manage 2-3hrs sleep at the start of the night with her next to me! Has worked wonders for my sanity. Though as previously mentioned it's not advised for pre-term babies. I took the risk as only 2 days pre-term. I'd maybe call your health visitor and ask their advice.

Worth noting that lots of these symptoms bother them less than we think. They often strain and grunt to poo as their body is learning how to do it but they can often sleep through it unlike us!

Interestingly I read that exposure to cows milk (formula) at birth can lead them to develop a temporary intolerance. Might be rubbish but like you, mine had formula at the very start in the hospital.

All in all that's a very long message to say that I haven't found the answer and have been feeling like you, but from my reading and discussions with health visitors all of what you said are relatively common issues at this stage and may relate to reflux or dairy allergy. Either way they should hopefully outgrow the symptoms. But definitely talk about it at 8 week appointment.

As you say, the general feeling from healthcare staff is if they have lots of wet nappies and are gaining weight your baby is thriving!

My DD was similar. 34 weeks. It turned out she had tongue tie and was taking in lots and lots of air when feeding. I know your DD is FF but do you think she is swallowing lots of air? If so then maybe try a different bottle or teat?

She was also waaaay overtired as the wind kept waking her.

I wish I had persevered with a sling as think that would have helped her a lot.

The spots - could just be baby acne. DD2 had this really badly poor love. It cleared up after a few weeks.

@MrsWheels thankyou for the reply its really nice to read im not alone and your experience. I think its just so hard as everyday you hope its going to improve but it doesn't. The infacol actually made her reflux lot worse like milk shooting out her nose so I stopped it after few days. I spoke to her consultant who thinks its reflux and im requesting omeprazole because she really is crying in pain now sometimes, almost a similar cry to her vaccination cry its awful... or maybe yesterday was just a particularly bad day I don't know. she cant co sleep unless I have arm under her but im going to try the bed again she didn't like it yesterday though. oh well keep going! hope your little one keeps improving.