What a difference 3 years make

My youngest boy came into this world feet first and running. He was a breach and I delivered him naturally, 11 minutes after his twin sister on the 19th of August. Two little Leo’s, oh my, that would go well with my mix of Pisces, Scorpio, Aquarius and Sagittarius.

He was born, pale and slightly blue as breach babies are not encouraged to breathe until they are totally out of the mother or they run a high risk of pneumonia and other yucky stuff. He had hardly any hair and despite being exactly one week early, he was wrinkly and dry.

Hmmmm. My mother senses tingling, I was trying everything in my power to say, he was not affected by Hypohidrotic Ectodermal Dysplasia (HED), but it was to be so different.

The second day in the Mothers ward, I had time to really look at both my babies. Forming the bond, counting fingers and toes, smelling their “fresh” baby beings. I was in baby heaven. There were differences of course, he was a boy, she was a girl, so totally obvious they were not identical.

She had black hair, he had, barely there, white hair. She was pink and chubby, he was pale and skinny. Her gums were flat and wide in a half arc around the bottom jaw, also around the top. His gums were almost sharp around the top jaw and had a huge dip down in the bottom jaw, at both cheeks. He also has no nipple colour….. My baby boy was identical to his older brothers, he has HED.

This time round it was different. I asked the nurse to find the pediatrician and he came right away, I explained to him why I thought my boy had HED and he nodded and listened as well as asked many questions. He WANTED to learn! He agreed with me that “yes, this child has HED” and then went to fill in the paperwork we would need for Centerlink (the Australian Government run agency for Family Assistance, Pensions, etc.) and he also encouraged Midwives to come and see and learn as well. I felt totally supported and never questioned in a harsh way as to why baby is sleeping without a blanket or why I won’t swaddle him. Such a difference to when I had my first baby and had no idea.

I was supported with my first, but I always had the underlying “first-time mother, what would she know ” feeling all around. This time it was, “fourth-time round mother, I think she has a clue”.

My “baby” is on the doorstep of 5 years old now. He has just been to the Dentist and proudly presented his Orbital X-Ray to her. He will have several adult teeth both in the upper and lower jaw and he even surprized her by having one of his top incisors already coming through. There is a wonderful tip showing and it is an Adult tooth! We are very excited!

He is still plagued by eczema and his inner workings hurt so much when he is processing food but he is a sprightly 4/11 monther and nothing holds him down for long. Having two older brothers who are the same, he is so supported within the family, he does not see himself as strange, he sees the other boys in the world as odd. And, he is still hitting the floor running.

With Love & Support,

Tarja Kelly

Once Bitten…

You would all be familiar with the saying “Once bitten, twice shy”. Well let me tell you all about one time we were “bitten”.

We had two lovely little boys and we had found out that they both had a syndrome called Hypohidrotic Ectodermal Dysplasia (HED). We were still learning and discovering things unique to both of them and amongst these times, we also spent many days in hospitals.

If it wasn’t a fever it was croup, or asthma or eczema. We were there for days on end and more often than not, they would pick up Rota virus as well so another week of drips. The nurses all became very good friends and every time we would leave it would be with a “Lets hope we never see each other again”. All in good humour though, we liked the bunch there.

At one stage our visits seemed to coincide with a sighting of a nurse from that ward, outside the hospital. We’d be shopping and see one of the nurses, just a glance and a wave across an aisle and that night or the next day, we’d be in again for one or another reason.

We must have been the only family after a while, where a nurse, off duty, would check with the shopping center first to see if we were there or not for fear of jinxing us into hospital again.

Soon I was pregnant again, a pleasant little whoops which turned into a double whoops by the first ultrasound. Oh my, Twins….

We had more stints in hospital but the one I’m going to tell you about was the one which happened out of the blue.

My little man had a fever. He was quite the little trooper, fighting it off with a dose of Panadol and playing in between. I was 25 weeks pregnant and we had a few issues happening with little man number two, so the quiet, older one was being a blessing by not complaining and “needing” me. We had just spent a weekend away at a camp with other ED kids from all over Australia and had the excitement of flying there and home again. Little man was all tuckered out, being so close to his most favorite form of transport in the whole wide world, and besides, he was always a bit strange after a longer stint away from home.

As the fever dragged on and by the third day would only be supressed with panadol and nurofen, we were getting a bit suspicious about what could be happening to him. He had no pains, he wasn’t complaining of anything, he just got very hot, lie down and wait for the panadol to work. Then he would be up and playing like “normal”.

I had an ultrasound appointment because they wanted to check if bit and bot were ok after the flight so I arranged a respite worker to come and watch the boys. I gave her all the details and told her about the concerns I had with the fever and that we were going to the doctors after my appointment. I don’t know if fate intervened then or if I was more worried than I wanted to be but the last thing I told her was “If you are at all worried, I give you permission to lock up the house and take him to hospital.”

I must admit, I was a little apprehensive leaving them that day but I also knew that they will be looked after. I did need to see my babies were happy inside their cocoon too.

My appointment was almost 20 minutes long and when I went out to pay, the receptionist let me know that the hospital called while I was in. They assured me everything was ok but that the carer is there with my boys and I should go there first. I was there in record time but still with the assumption that it was the fever which spooked her.

Because she wasn’t the mother, the hospital emergency department didn’t do more than check his temp and vitals before I got there. She was so wonderful, she took my other boy home to wait for my husband to get back from work before clocking off. He had been called too and got permission to go home early for compassionate leave.

I was there and things went into motion. The doctor called for a chest x-ray and he was wheeled in for his umpteenth one. As we waited for the film, the nurses and odd doctor would pump me for information about HED and we provided everything we knew at that stage. We were well on the way to educating as many as we could to spare other parent’s of the agony of not knowing until the teeth erupt.

The x-ray came back and suddenly we were in a flurry of action. The doctor had him on an oxygen mask and put a drip in, the nurse was on the phone to the major hospital a town away to arrange a transfer and the doctor was briefing the ambulance crew.

In amongst all this, sat my little man with fever starry eyes, smiling that he would get a siren ride in the ambulance. Before that, he had only ever had a silent run. Little hero.

When we finally got to the accident & emergency department at the “big” hospital, it was standing room only. My boy was parked in a hallway and I was standing next to him, trying to keep my belly from blocking the rest of it. Our Ambulance driver was not impressed at all yet there was not much he could do. As nurses recognised us they smiled but had to get on with their other assignments so nobody really stopped untill, with a glint in his eye, the Driver pulled out the x-ray and nonchalantly stuck it on the illuminated wall.

You know what happens when you turn on a light in the middle of the night? Moths come from everywhere, immediately. Well, this is what the x-ray did with doctors. Suddenly from every corner came a doctor or an intern to stare at the picture before them.

“WHO owns this?” One of them finally asked and both of us pointed at my boy. Well, he was placed in a room, examined and listened to and next thing we knew, he was rolled to the ward.

It was like coming home in many ways, we knew everyone on duty that night and some of the nurses dropped in after their shift to catch up on the latest.

We were there for a week. Anitibiotics and oxygen to fix his Pneumonia. It was only later that I found out he had fluid on his lungs and had there been even 5 millimeters more shadow on the ultrasound, he would have been taken by helicopter to Brisbane hospital to have his lungs drained.

We had an angel watching over us that time.

With love & support,

Tarja Kelly