Elodie 0-12 months: refusing bottle, no sucking reflex & dream feeding

Almost 4 months after birth we discovered that Elodie had thrush during a routine check up (she was drinking rather slow). We used to mention this to the nurses before, but her mouth was not checked until now. Her tongue was white and you couldn’t wipe it off.

When she was born the nurse said it was milk residue, so I didn’t think of thrush anymore. I didn’t even think of checking with doctor Google, or going to the GP, seriously, my brains were not working post-partum. So, she basically had thrush since she was born, hence her drinking problems.

Antibiotics
From this time on everything went down hill. The antibiotics weren’t working properly, so she had to take two treatments eventually. Elodie currently has brown spots on her teeth from the antibiotics. Luckily the dentist said it shouldn’t influence her adult teeth. A bit of the enamel on one tooth actually crumbled off recently. So I will push the dentist to fix it because it is getting bigger. It’s not a cavity.

Orange juice against thrush
The thrush kept coming back, we were fully bottled feeding because she wouldn’t latch on my breasts any more, we were cooking everything after each feeding, even the dummy. Then I read an article suggesting to use fresh orange juice or a berry concentrate. The sourness of the juice should eliminate the thrush naturally. I put a bit of juice on a cotton wool and cleaned her tongue. This actually worked so much better than the antibiotics, I kept doing this for a long time to prevent a new outbreak.

No sucking reflex
By now, her sucking reflex was gone. She would only drink when she was asleep. We had a speech therapist and a breastfeeding specialist supporting us, but to no avail. They couldn’t help us any more. Elodie couldn’t suck, breath and swallow at the same time anymore. This is innate behaviour in babies only. So, for the next 9 months we could only feed Elodie while she was lying in our arms, asleep.

Due to the dream feeding she eventually only slept in our arms during the day until she was almost 2 years old. She would wake up after feeling the tiniest movement if I would try to put her down. But her eating problems were our main focus, we didn’t have the energy to tackle the sleeping problems as well.

Goodbye breastfeeding
I had to give up my dream of breastfeeding due to the feeding problems. It felt like such a big failure, I wanted it so bad. I really believed it would have had a positive impact on my maternal bond while going through these difficult times. It’s so hard to enjoy being a mother while going through so much stress.

One of my best friends tried to support me as much as possible to get Elodie to take me breast again. Unfortunately after months of trying it didn’t happen. Yet, after a few months, suddenly she breastfed two times. I think this gave me closure, I was incredibly happy that it happened, I could still experience it. I have been sad about not being able to breastfeed for years. Eventually, when Elodie wasn’t drinking milk any more I was able to let it go a bit more.

Physiotherapist
We got a physiotherapist when Elodie was 16 weeks old because her neck wasn’t strong enough. We had to train her to keep her head up. It was very difficult for her, the poor look on her face, the crying. I know now that eventually all kids (if there are no other medical issues) can keep their head up. By holding her up more, or carrying her, it would be a more gradual transition to stronger neck muscles.

The next months were about making sure she drank enough milk while sleeping, and teaching her to drink from a spoon and a regular cup. She would gag and throw up pretty quickly. The minute she cried she would throw up her milk. Milk that took us blood, sweat and tears to give her.

Feeding 10 hours a day
We were feeding her up to 10 hours a day. The physical and mental strain was enormous. My mum was still living with us because it was too much to handle. Also, after six months of leave I had to go to work again. Due to Elodie’s feeding issues no day care in our area was willing to take her in. It would be too dangerous for her health, and they simply didn’t have the time for such strenuous feedings. We barely managed to take care of her with the three of us.

Not heard
Doctors didn’t take us seriously because Elodie’s weight was okay (p50), and she was growing. It didn’t matter that I told them it took us tremendous efforts and it was not a normal situation any more. A year later, when I totally lost it, they told me: ‘you stayed so calm during those check ups, so matter of factly, that we didn’t feel there was a problem’. Hello? I verbally communicated everything. They didn’t take me seriously, I was just another mom. I had to hit rock bottom before they would hear me.

The comments
We heard comments like: ‘Our kids didn’t eat well either, they are okay now. Just don’t feed her for some time, she will get hungry and start drinking then. You are just too soft, you should toughen up. You should be more strict, let her cry. Maybe you shouldn’t stress so much about it, it’s normal. You wanted kids. Just let someone else babysit her for a day, so you can relax. I will take her in for a week, she will start eating. You should try this, or that. You need quality time as a couple and personally as well. Just feed her what she likes, the unhealthy stuff. You need to take her out, you can’t keep her inside forever.’

I felt so alienated and alone. Nobody understood us. Even our closest friends didn’t understand us, and our family only got to understand the situation a bit better when they actually experienced it first hand. And even so, most family members still don’t fully understand it.

Along this journey I have lost some friends, which is okay, I can live with that. How can I think of myself or have fun when this situation was drowning us and there was no diagnosis or cure. Feeding her took almost the entire day. There wasn’t even time left to properly eat a meal myself. So, I shut myself off, and didn’t discuss our problems any more because of the unhelpful comments, and judgements. Talking about it gave me more anxiety and panic attacks. If even my own family didn’t understand how could outsiders?

We were judged and blamed for the misery we were enduring. It was a really hurtful and dark period. We had tried everything and more, to make Elodie feel hunger. To make her drink and eat properly. It’s not like we were enjoying this situation. Instead of getting unsolicited counsel, hearing what other mums did what worked for their child etc. I just wanted acknowledgement: ‘I hear you, you are not a bad mom, you are trying the best you can do’.

Special needs children
My husband’s best friend has a child with rheumatism. They found out when she was 2 years old, and they have had a similar journey like ours. Even worse I think, as their baby was constantly crying because she was in pain, and nobody knew what the problem was. Due to the pain she was in she didn’t eat well either. People without special needs children don’t understand the suffering that you endure. The strain it puts on your family, your relationship with your partner, the effects on your mental health. I got really close to his wife during this time, and she became one of my best friends.

I am okay, not really
I am not the one to show my emotions easily, I pretended to be okay, I smiled, I did whatever it takes to appear fine. This was the only way I could stay sane and survive this. It’s part of Chinese culture, don’t show your feelings, it’s weak. I was also afraid I would be fully absorbed by all our problems if I let myself go, and afraid that I wouldn’t survive this. This behaviour would cost me dearly a year later.

We did everything we could to prevent a tube. I pumped milk until it naturally stopped when Elodie was 18 months. The different flavours of breast milk helped shape her taste development. Also, still getting her food orally meant that the muscles around her mouth were still trained and getting stronger.

When I started working it was a nice escape from the misery at home. I love my work, and being around other people was nice. The high stress situation at home caused many fights, hurt, and breakdowns. Also, being a family with three adults in the house, the third one being my mom, was unhealthy. It was necessary because day care didn’t accept Elodie, but it was not good for our mental health and our relationship.

Grandparents in Chinese culture
Grandparents are the main care takers
In Chinese families, and even other cultures, this is a really common practice. When a baby is born the grandparents take care of the child while the parents go to work. If they work far away the parents only see their child once a year or even less. Our house cleaners haven’t seen their child in five years. They send their earned money home so their child can have a better life.

Grandparents take care of the children full-time until they are around 5 years of age, and easier to handle. The parents focus on their careers and enjoy their lives until that time. There has been a lot of research about this practice, and many have shown that it will lead to problems between the parents and their children.

Finished product
I see this a lot in my home town, Eindhoven, in the Netherlands as well. There are many Chinese expats here. The grandparents from both sides each come three months at a time (visa is only for three months), until all children go to primary school. The parents focus on their careers. Sometimes they even feel that they are not capable to take care of their young children anyhow. They will take care of the ‘finished product’.

I don’t want to sound disrespectful, I am thankful for the help my mother provided, but it was not good regarding other aspects of our life. I would never do something like this again. Unfortunately, we didn’t have any other option.

We managed to follow our feeding structure until the end of the year. By now, Elodie had to have massive entertainment for her to eat her mashed fruits or vegetables. She could only eat fully puréed foods, otherwise she would vomit. The tiniest bit of solid food would cause her to vomit. She couldn’t eat a ‘cookie’ which was only a millimetre in size without vomiting.

We couldn’t go outside, or do anything at all. Even the idea of people coming over gave me anxiety. So, I pushed friends and family away. Elodie was still dream feeding and when she was awake we had to give her puréed food. The entire day was about feeding her, getting her to eat. My father in law came from Belgium because 1 person alone couldn’t take care of Elodie. There had to be someone distracting her while the other person fed her.

Sick leave
Working at the office became more and more difficult. I couldn’t contain my emotions any longer, I was avoiding talking about Elodie, hoping I could ignore my problems. Maybe they would magically disappear. When people asked how I was doing, I would start to cry. By the end of the year I had a talk with my boss, who didn’t understand the extent of the situation and the effect on my mental well-being. This discussion was the last straw for me to fully break down. They didn’t know, and understand what was going on until I showed them my rock bottom, I couldn’t pretend anymore. By the beginning of 2019 I was on sick leave, working three days a week was no longer manageable. I was a wreck, broken, and was barely getting through the day. Elodie would turn one end of January, we didn’t know yet that Elodie’s second year in our lives would come with a new all-time low and even more worries.