Imagine your newborn was so ill they never slept. It was our family’s reality for the first year of our daughter’s life. Hi, my name is Peta. Let me tell you about our experiences as first-time parents and how this led me to create this unique sleeping aide for children.
Baby Indie was born with undiagnosed GERD CMPA as well as both tongue and lip ties. It wasn’t until day 2 we knew something was not right. Our baby girl wasn’t latching. She looked like she was feeding but she wasn’t properly sucking.
Unfortunately, the paediatrician conducted speedy checks over her- buzzing in and out of the hospital room on the morning after she was born. He missed her tongue and lip ties completely. The doctor missing this was pivotal for us. If he’d identified these things early, the hell we all experienced could have been a lot less with a simple instant lip and tongue tie correction.
She couldn’t latch to my breast and she was taking in so much air when trying to feed this exacerbated her GERD, which she has inherited from both myself and my husband. We were unaware she had this until 8 months later when she was diagnosed by a switched on specialist at the Royal Randwick Hospital.
On day 3, the nurses instructed her to be put onto formula because she was dropping weight fast. I was so against this idea. My milk came in and I started to develop mastitis because it wasn’t being removed. So I started pumping my milk with a double breast pump. It wouldn’t come out much even though my breasts appeared to be full. But I did get a small amount. The nurses said it wasn’t enough for Indie to feed.
The nurses were all freaking out, arguing all the time and stressed because Indie appeared so irritable. All giving different conflicting advice, and lactation consultants trying to help but nothing was helping.
“We were a mess. We went home after they kept us an extra week- we couldn’t wait to get out of there.”
We were first-time parents and we really didn’t know enough about the whole process. We battled on our own for a couple of months with Indie projectile vomiting all day every day. We went to see specialist after specialist – all not identifying anything as the cause. We almost gave up as there were never any answers. Indie cried all day and night and smelled like acid. She slept for 40 minutes at night as her body would crash from being on such high alert for so long.
I was researching all the time trying to figure out the cause of her irritations. I thought because Tresillian helped babies sleep maybe they could help. We spent a week there and they had no idea how to get her to sleep and said because her issues were health related she needed a different level of support. We already tried everything else. While I was there, I was researching cow’s milk protein allergy. Indie had all the indicators, so I was given a tub of the non-cow’s milk formula from a doctor visiting Tresillian. The first feed she was like a different baby. Still projectile vomiting but less crying and less back arching. It was very noticeable so I took her to see an immunologist and she gave her a script for this formula.
The formula was disgusting – made out of potatoes and as a mother passionate about health, I wasn’t happy about the lack of nutrients. At least she was taking my small amount of breastmilk so I changed my diet to be dairy and soy free so my milk was not irritating her gut. After this change, there was a further positive improvement. However she was still not sleeping and clearly displayed her same symptoms, just less than before. I knew there was still something going on with her.
I noticed her crying was further reducing when she was given my breast milk rather than the formula. One day out of the blue, she just stopped taking the formula. She went a whole day with a small cup of only my milk and was rejecting the formula entirely, closing her mouth and turning her head crying.
“That day was a bad day that will stay with me forever as the screaming was unforgettable and I was freaking out wondering what to do.”
I had heard stories of babies rejecting their feeds and having to be tube fed. She consumed barely anything for 18 hours. So I quickly sought help to find a local milk donor as she seemed to gobble my breastmilk down. I knew nothing about milk donors. What I learnt fast was getting a milk donor wasn’t easy. I needed a milk donor who wasn’t eating any dairy or soy and wasn’t on any medications.
I had one local mother contact me who had one feed for Indie. It was such a relief. That feed got her through until the following day and the next day we found our next closest donor 1 hour drive from us with enough milk to last a few days. Some weeks we would live day to day driving to get enough milk to get Indie fed just for that day. Some donors we had lived 2-4 hours away and would be able to produce enough for us to have milk for 2-4 weeks. These big donations were such a relief as we would be able to breath for a few weeks without worrying about where the next lot was coming from.
Indie was still not sleeping but her symptoms had improved, most notably her stomach not rock hard and so large,, however she still continued projectile vomiting. I spent 6 hours per day/night pumping my milk just to get one small bottle to feed to her. Being on the breast pump every few hours meant I had time to research on my phone. I figured out she had the tongue and lip ties and sought help from 2 specialists who were experts in the field. Once they corrected the ties, it was another level of instant improvement when she fed from the bottle, resulting in less wind.
“Unfortunately, her ties were corrected too late and even though she wasn’t sucking in air anymore, the window of her learning the special sucking method for releasing milk from the nipple – we were told by her feeding specialist – was gone, hence why she still wasn’t able to breastfeed when I persisted with her.”