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Paddy and I got married 13 years ago when we were the ripe young age of 19.
In the first year as many couples do we wanted to start a family. It was time. We wanted to have babies of our own. It was also in that first year that we had our first pregnancy loss.
We experienced a ruptured ectopic pregnancy, yet we were back on the train to try again which we then suffered our secondary infertility. Our prayed over and over our time will come.
Fast forward four years later we welcomed our first little girl Alliyah. What a beauty she was she was she came into this world to fill our hearts with immense pride and joy.
Alliyah was everything we had dreamt off yet she was showing some concerning symptoms once we started introducing food. We were first time parents so still learning but we just knew something was not quite right with our little girl.
We are talking Vomiting, chocking, weight loss, major food refusal. She was not able to swallow certain foods very well without them being completely smooth.
Alliyah went through years of tests and was diagnosed with Eosinophilic esophagitis.
Eosinophilic esophagitis (EoE) is a chronic, allergic inflammatory disease of the esophagus (the tube connecting the mouth to the stomach). It occurs when a type of white blood cell, the eosinophil, accumulates in the esophagus. The elevated number of eosinophils cause injury and inflammation to the esophagus.
During that time and dealing with the cards that we had been dealt with our first born baby we lost another two babies. It was another ectopic pregnancy and then a sweet baby with trisomy 16.
During this time where are hearts were healing we found some light. We welcomed our second daughter, Chloe who is now 5, she’s a beautiful firecracker and just what we needed to heal our broken hearts.
We then welcomed another sweet girl Ella, who is 2.5 now!
Things with Ella seemed like a dream. She was such a good feeder, chunky, and such a good sleeper! (yay for good sleepers!)
Until one day when this dream bubble that we were living suddenly changed.
Ella dropped weight, fast.
She started dumping, (undigested milk in her nappy) and vomiting nonstop.
The doctors recommended that we start solids, and things then got worst. We were living in a complete nightmare watching our baby so sick.
She was vomiting so much she would end up unconscious. Grey and floppy. Something that no parent ever wants to see their little baby go through. This was happening every single time she ate. It happened with every sort of food she consumed. S he was losing more and more weight and again, our hearts started to break.
Ella was then diagnosed with Food protein-induced enterocolitis syndrome (FPIES)m which is an adverse food reaction involving the immune system that mainly affects infants and young children. It is caused by an allergic reaction to one or more ingested foods which results in inflammation of the small and large intestine.
Ella only had two safe foods at the time, sweet potato and pumpkin.
She was so malnourished that the doctors decided she needed some help and her tube feeding journey began.
We started noticing that she was now dumping her safe foods, vomiting her bolus feeds and again losing weight (hearts continuing to break watching our baby girl so sick)
After some investigation her doctor noticed that she wasn't digesting the formula. It was just sitting in her tummy. We started her on some medication to help move it through faster.
She then got a peg, a tube in her tummy instead of her nose. As her face was breaking down and she had pressure sores it was then I then found out I was pregnant.
A happy surprise baby (hearts starting to heal again) With this pregnancy we had No fertility meds! (our little miracle!)
6 weeks after Ella’s peg insertion paddy and I noticed she was acting strangely.
She was sleepy, agitated and just super sick. She had a rash all over her stomach, so we took her to hospital and at first it looked like she had an infection called cellulitis. Turns out we were all very wrong.
The day we were about to be discharged she was thrashing on the bed, I noticed that her pyjamas were covered in black ooze.
I pulled her top up and saw that her peg was hanging out of her stomach and there was stuff coming out everywhere, so I put pressure on it and the doctors called us an emergency transfer to Royal Children’s Hospital. Lots of Lights and sirens and a very scary ride later we were informed that Ella had Buried Bumper Sydrome.
Buried bumper syndrome (BBS) is one of the uncommon and late complications of percutaneous endoscopic gastrostomy (PEG) placement. It occurs when the internal bumper of the PEG tube erodes into the gastric wall and lodges itself between the gastric wall and skin.
Ella also had nasty infection in the lining of her stomach and had also ripped her stoma.
She had surgery and they thought they were able to salvage the stoma tract and replace the peg with a different tube. It was this moment that things hit the fan.
Once again. Whatever Ella put in her mouth would come pouring out of her stoma. Everything. Even a sip of water.
It was around this time we found out were having a baby boy! Then we found out we were having Such a ray of light in a dark season.
Ella went through months of hospital trips and medical intervention. This included five replacement tubes to see if the tube was faulty and so many admissions I cannot even count. Then Covid hit (nothing like a pandemic to add to the chaos)
Paddy was called to a different role in his job and life was crazy. In-between emergency hospital admissions with Ella, two other girls at home that still needed the love and support from Mummy and Daddy. Times were tough.
Then we had our boy. Ezekiel. I cant even tell you. The joy and the hope we felt. Even though (like everyone else pregnant in covid) having a baby in the first set of lock downs was crazy. When we weren’t sure If gas and air was safe or if our partners could even be at births. A baby in a pandemic? (crazy right) We had A child who needed more than one parent at appointments and procedures, a newborn and two other kids and a husband who was working crazy hours? No words.
Paddy then had to take Ella to hospital to have her tube removed so they could let her stoma heal and place one in her nose. (That she is still rocking) At 4 weeks old, Zeke was hospitalised with a peri anal Abscess and was taken to Royal Children’s Hospital for surgery.
It was around this time that we noticed that our little prince was not acting the same as our other babies were at this age. He was having a lot of one-sided jitters and was always very, very unhappy. He was always screaming and not developing like we would have expected (and after three kids we knew kind of what we were looking at by this age)
Zeke went through so many tests and scans (long story short. Some of it is too yuck for us to want to remember) MRI’s, lumbar punctures, bloods, ultrasounds you name it.
It was 10pm one night and his numerologist came in and informed us that they were super concerned about Ezekiel. That he was showing some worrying neurological abnormalities.
Our world was shaking. How could this be happening AGAIN. Why us?
Once again, we were in the throws of having a baby who was not well. Fast forward to two months after and Our Z man was diagnosed with Cerebral Palsy, Dystonia, and Cerebral Irritation. The cause? We still to this day do not know and we are awaiting more genetic tests to see if we can find out.
Zeke is still in and out of hospital regularly. He was recently diagnosed with Central Hyperventilation Syndrome and is now on oxygen and monitoring when he sleeps which is still a lot. He is the sweetest little dude and is making small gains now as he closes in on nine months old.
He still cannot sit or roll and is only just starting to hold his head up (most of the time haha) He’s on a lot of different medications for his muscles, to help them relax and not be as tight but we are still trying to help him control his dystonic episodes, as they are super upsetting and can last hours until his body shuts off and he falls into an exhausted sleep. There is so much that I'm not saying but that's only because we are in a place where we are just coming to terms with everything still ourselves. As you can imagine. The stress on our family is something we could never express and something we pray that no one has to experience.
However, from our heart to yours if you do find yourself in this place. I am sorry and I’m here. Reach out. There are many organisations, and people waiting to hold your hand and get down in this pit WITH you and help you see the light on the way out. This is a hard lonely place. Do not underestimate it. I am with you.
This is our story.
