The Early days: 0-3 months

Arrival of Baby Bear

When Little Bear arrived, chaos descended before I had even left hospital – I think he arrived as he meant to continue! The first feeling I had of ‘something wasn’t quite right’ became quickly apparent. Following the birth I needed a blood transfusion, at this point my Little Bear had been feeding non-stop. When I say non-stop, he had been solidly feeding for about 12 hours, ‘it’s normal ‘ ‘he’s bringing in your milk’ I was told. I remember thinking ‘oh’ this didn’t happen with my daughter, but all babies are different so I went with it. This continuous feeding went on for hours, days, weeks, and even months. He was feeding close to 20 hours per day, every day. In one way I was quite happy. Physically it was going to take me a while to recover from the birth so I didn’t mind being superglued to the sofa 🙂 However, after a while I started to sense something wasn’t quite right.

The First 3 Months

Due to a difficult birth I was given extra visits by the midwives and the health visitor.The continuous feeding continued and lots of comments and suggestions were made… ‘low supply’ or ‘your supply’s taking longer to come in’ possibly because of the blood loss I’d incurred, ‘he’s a hungry baby’ he was a chunk weighing in at over 10lbs at birth so any of these could have been plausible. However, something still wasn’t quite right! He was screaming or feeding constantly, seemed in pain, barely slept, always had to be held, wouldn’t lie flat, had a ridiculous amount of dirty nappies a day (12-15), and he struggled to regain his birth weight for some time.

One day a midwife suggested he may have a tongue tie. A tongue tie I thought, what is that? It wasn’t something I’d really heard of before. After some research it seemed to make sense as far as Little Bear was concerned. We were sent to see a health visitor at our local children’s centre who confirmed Little Bear had a tongue tie. Now what we thought? In our local area, we could get a referral to the neighbouring NHS trust but the wait was long and things weren’t good. It wasn’t really something we could stand by and watch as we were all suffering. The only time he slept was between 3.30am and 5am in the morning, the rest of his sleep or snoozing occurred whilst nursing. We made the decision to pay privately and a week later we had the tongue tie snipped. We were told it could take a little while to settle things down as he would have to learn to get a good latch. After a week or so there had been some improvement but things still weren’t quite right. I contacted my Local Infant Feeding Team (who I should add have been brilliant) and they sent out someone to check his latch. His latch wasn’t that great and it took a lot of input from a lovely feeding specialist to improve things. We tried nipple shields, different positions, all sorts and eventually (with a lot of patience) he learnt to feed better.

However I still had a nagging feeling that something still wasn’t quite right. The constant nursing continued, he remained really unsettled and he screamed lots!. I started to question myself… ‘Why is this happening? What’s going on? Is it me? Is it my milk? Is he hungry?’ He still screamed and fed constantly and was the windiest baby I have ever known. One day when the health visitor was round she suggested reflux. I’d never really thought about babies suffering with reflux, yes I knew babies were sick lots but my Little Bear wasn’t. I’d never even heard of silent reflux. The health visitor suggested a few alterations we could make, raising one end of his moses basket, various colic treatments such as infacol, colief, keeping him upright (luckily we had invested in a sling before he was born), putting a hot water bottle in his moses basket before we laid him down. We had mixed success with these the best being the sling (he still loves going in to the sling now).

Still the nagging feeling was there, something didn’t seem right. It was a world of constant exhaustion like I have never experienced before. I was surviving on 1-2 hours per night and the days weren’t easy. Little Bear was a force to be reckoned with, there was certainly no off switch. People tried to ‘help’ ‘He’s a mummy’s boy’, ‘He’s hungry’, ‘He just wants to be held’. Deep down I didn’t agree that this was the case, there was something about his cry that said otherwise. I went to the doctors where I saw a helpful GP who diagnosed silent reflux. Luckily she had experience of her own children having the condition, she prescribed Gaviscon. I felt sad. At this point Little Bear was only weeks old and I hated the fact that I had to drug him, it seemed wrong and a bit of me thought maybe he is just a wingey baby (although I didn’t really believe it). My husband assured me it was the right thing to do as we had exhausted all other routes. So I did. We started the meds, no improvement. As he wasn’t a particularly sickie baby I don’t think Gaviscon worked that well for him as it was more a thickener to stop them throwing up. I I questioned the use of this for our Little Bear but under the NHS we had to try it before we moved up the ladder. It was also a bugger to get it to Little Bear when breastfeeding. If he wasn’t feeding he would be screaming. In the end we had to syringe small amounts of it into his cheek whilst I was feeding him.

After a few weeks, I went back and saw the same doctor and she referred us on to a pediatrician. No further medication could be prescribed by the GP, only a pediatrician. We had an urgent referral to our local hospital. By this time Little Bear was hardly gaining any weight, he was born on the 98th percentile and now sat below the 50th percentile.. all in a matter of weeks. Along with his constant feeding, he was also covered in a rash and was having dozens of dirty nappies that were sour smelling, mucousy, green and would explode with some force out of the nappy and everywhere. At this point because he wasn’t gaining weight I was advised to give him formula top ups otherwise they would consider force feeding him. When we did this his symptoms magnified and I remembered thinking this is making him worse so after several attempts of various formulas SMA and Aptamil I stopped. We had been doing some research and had started to look at the possibility that Little Bear had a cow’s milk protein allergy and before we met with the pediatrician I started to eliminate dairy from my diet. The urgent referral that we had was taking ages and we found out by various health professionals that it would be months before we would be seen and they were concerned that Little Bear would be in hospital if we didn’t do something. Thankfully due to my husband having private insurance through work we were able to see someone sooner.  The pediatrician also suspected CMPA too because of the rash and the symptoms and I had started to feel that the dairy elimination diet was helping, his nappies were relatively better and he was a bit more settled. The pediatrician also prescribed ranitidine for silent reflux to try and settle him and after a few days there was some improvement. He slept more, cried less and seemed a bit more content. These improvements were short lived though and we began a journey of increasing the amount of medication. With each increase we had a short term improvement and as he got used to the medication his symptoms returned finally we reached the max dose. Following further appointments at the hospital he was prescribed omeprazole because there was no significant improvement in his symptoms.

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