My failure to thrive baby - Part 1

My failure to thrive baby - Part 1

Just a little side note, I originally wrote this article in September 2019 and have republished it here on Mummy Matcher xx

Dave and I had very different opinions on whether or not to go for number 3 (for him 4). He was done after Aria (our 2nd and admitted we do refer to her as the poster child for contraception!) and was happy to get the snip. Whilst I wasn’t yearning for another child, I didn’t have that “done” feeling which I had heard so many women talk about and still wanted to leave our options open.

2 months before we found out I was pregnant with Pippa, we were incorrectly told by a medical center staff member that I was pregnant when they misinterpreted some routine bloods. It was only for 4 days but once we got over the initial shock of it we were excited and were then both really upset when we were told it had been a mistake. I think this cemented it for us that we were in fact not done but it just was not the right time and would start trying towards the end of 2018 (this happened in January 2018)

Fast forward to going away 3 child free nights in March for a friend’s wedding interstate and we brought home some extra baggage. It was a shock because we were still using contraception. This was also our second “contraception baby” as I was taking the pill when we fell pregnant with Aria however it took us 2 years of actively trying to conceive Maggie!!

My pregnancy with Pippa was uneventful. I was really tired however I was also a working Mum of a 3 and 1 year old. It was my first pregnancy since I had lost 20+ kgs on the Healthy Mummy Program and therefore I was SO much healthier this time round and managed to stay at the gym until my back said NO MORE when I was 28 weeks.

Pippa’s labour and birth were amazing. It was the healing birth I needed after Aria’s which was fast and intense which made me feel really out of control. I’m definitely not a hug a tree and sing combyah type of girl however I enrolled in an online hypnobirthing course and I really do believe it is the reason I had such a positive birth experience.

The day Pippa was born I had taken Maggie to little athletics, I couls feel the baby had dropped and my braxton hicks were definitely more intense however I didn’t think much of it as I hadn’t had my “show” yet (turns out you can labour to fully dilated and NEVER have a show). After Little Aths we made playdough, I cooked dinner and cleaned the house. When Dave got home from one of his fire fighting courses I said the girls might need to go to Mum’s tonight “just in case”; he thought I might have been overreacting so sent me off for a bath. Well that did the trick because I can tell you that after that bath it was ON.

After taking the girls to Mum’s Dave had to pack my hospital bag (I was only 37 weeks, I still had plenty of time) and it was time to go even though Dave asked me multiple times if I was sure we needed to go yet? YES DEAR IM SURE. Fast forward the horrendous car ride and walk into the antenatal ward (come on Mumma’s you know what Im talking about, when you are in active labour and the thought of walking and or sitting directly upright brings tears to your eyes). They put me on the machine to make sure I was “definitely contracting” and left us. I swear to god if one more person suggested that I wasn’t in labour I was going to lose all my hypnobirthing induced calm and punch someone!

Within 45 minutes of getting to the hospital Pippa Alee came into the world. 6lb11oz and 46cms of pure perfection. I couldn’t get over how small she was though. Maggie was 9lb2oz and Aria was 8lb4oz. One more perfect girl to complete our family. And no, I was not disappointed that she was a girl. I wanted 10 fingers, 10 toes and a healthy baby. Dave isn’t that sort of guy who needs a son to complete him, trust me, this man was made to be a father of girls.

Never too early for a selfie
Daddy meeting his baby girl

I noticed straight away that Pippa had a pretty severe tongue tie which we had cut by an AMAZING lactation consultant and her obstetrician/anesthetist/local GP husband (don’t you just love small towns?) We then seen a baby chiro once a week to help her realign and try to establish feeding, he was the first one who picked up on her low tone, I didn’t think anything of it because she was literally a week, maybe 2 weeks old.

Not going to lie, those first few weeks of feeding were hell. I had the child health nurse constantly telling me to put her on a bottle. I was feeding every 3 hours, expressing after feeds, topping her up and then expressing again 1.5 hours later and then had to start all over again. I was taking 13 tablets a day of blessed thistle, fenugreek, iron tablets and maxalon. I was eating all the oats and brewers yeast I could get my hands on. By the time Pippa was 5 weeks old, I had had enough. Pippa still wasn’t putting on weight. I know I will get backlash for this but I truly believe there is a point where your own desire to breastfeed can start to cloud your vision in terms of what is best for your baby and I had realised this with my other two. Maggie was 9 weeks when she started the bottle full time and Aria was 5 months. With these two, the bottle fixed everything instantly however with Pippa, it only exacerbated them.

Pippa would only drink 30mls per feed before falling asleep. At the time I thought she was content because she was so small and didn’t need much, now I know it was from exhaustion due to her low tone. Our pediatrician (Lalith) was amazing, I was genuinely not worried about her but he told me he was concerned and by 8 weeks she had only just passed her birth weight so we landed our first admission to hospital with “failure to thrive”. Lalith took bloods and he said seeing he was already taking some blood, he may as well send off for micro-array aka FISH test too (fancy words for lets examine her genes). Little did I know how much that little test “just because” would change our lives!

We went discharged from hospital the next day on high calorie formula and her preliminary bloods had come back fine however within 2 weeks I was back in Lalith’s office as she still wasn’t gaining weight and he was concerned as he noticed in hospital she snored. This is my second snoring baby, seriously Mumma’s, if your baby/child snores GO TO THE DOCTOR. He wanted to admit her again so she could be seen by a ear, nose and throat (ENT) specialist in our major hospital in Adelaide which is 3.5 hours away however I thought he was overacting and “negotiated” to wait for us to see our private ENT in a week because even though she wasn’t putting on weight, she was still a happy (skinny but very happy) baby. Sick babies are miserable right? I had two older kids, I knew what sick babies looked like and Pippa was not a sick baby. He agreed to let us wait but told me to pack a bag because if the ENT didn’t find anything he wanted us admitted to the Women’s and Children’s Hospital with no arguements.

From the time of our last appointment with Lalith, Pippa’s wet cough that she had had since she was approx 4 weeks old started to worsen; I had always put it down to her having two germy older sisters. It was also in this period that we received the results from her genetic test which I had forgotten about. Do you know that when your child’s genetic screening test comes back showing something you get a phone call that goes something like this “yes the blood test shows an abnormality, no we can’t tell you much about it over the phone, come and see us in 3 months as that’s the earliest available appointment.” This was my first introduction to the horrible world of WAITING and the UNKNOWN of test results.

Fast forward to our appointment and the ENT just looked at me and said there was no way he had a scope small enough for Pippa and we were admitted to Women’s and Kids which came to feel like a second home. I was still in complete denial about her being unwell and kept expecting them to send us home at any moment and accuse me of wasting their time. After endless tests, x-rays, tears, investigations, consultations it turns out our baby was aspirating and a naso-gastric tube (NGT) was inserted. Let me tell you, once you go to tube feeding your baby, you don’t give a shit about the breast vs formula debate, fed is best!

First photo rocking her new accessory

Seeing we were an inpatient it meant that I also got to meet with the geneticist and not wait 3 months for the appointment as an outpatients. I’ll write another blog on this individual meeting but I was basically told your baby has what is called a micro-deletion named 2q13, she is missing 17 genes in total and could have severe developmental delays, disabilities and cognitive defects but if there is a genetic condition to have, this is one you want. Here is a booklet on 2q13, we will see you in our regional clinic in 8 months to answer anymore questions you might have. The end. I still to this day have not been able to bring myself to read that entire booklet.

We were sent home after 10 days to muddle through our new normal. I wish I could say she started to sleep better as she now had a full belly but honestly it made no difference! She was still her gorgeous, happy self (as long as she is being held), she just has a broken sleep button and as I wrote this, she STILL does. Another 2 weeks past and something still wasn’t right as she wasn’t gaining weight, god I hate the term “failure to thrive” but that’s what she was so back to Lalith.

He sent us back down to Adelaide to see respiratory and gastro because they were literally the only 2 teams we didn’t see on our first admission. This is when we met our Knight in Shining Armour, the beautiful Professor Declan Kennedy but there will be more on this next blog.

Our first family hike after the NGT was inserted, Warren’s Gorge
Dave and I refused to have the NGT hold our family back, we look at it as just another way to feed.

Love Hayley x

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