Good-bye Von Rosen.

Today Abbe was let out of the splint. Instead he’s been given a frejka pillow splint. Just like the Von Rosen it keeps his legs at an outward angle, like a little frog. The great advantage is that it can be taken off at home and that means that every time we change Abbe’s nappie he gets to wiggle his legs about freely for a few seconds.

Best of all though – he can bathe at home.

Return visit.

It’s now been almost two weeks since we left the safe haven of the hospital with help at the press of a button, for a life at home. With a half hour drive to hospital, at best. To my own huge surprise, the fear only lasted for a couple of days. It didn’t get any worse. We’re all right at home; we manage without all the great people at the 323-ward, even though I miss them at times.

Once a week we take Abbe to the orthopaedists to give him his bath. A nurse takes the splint off and leaves us in a room with a tiny bathtub and a few cloths. A quiet moment to ourselves with our baby, happily splashing around in the warm water. Naked. No splint, no nothing. Just Abbe. My favourite time of the week.

We’ve been for a few return visits at the heart clinic as well. Abbe’s not following the desired weight-curve. Big sigh. The oxygen saturation level is not improving either. Another big sigh.

DIY cardex.

In hospital great care was put into keeping book of everything Abbe ate. On something called a cardex, notes were taken on (in addition to pulse, pox, temperature and other important things) every millilitre of food, whether taken by bottle or probe. And every nappie was weighed to see how much came out the other end. Like some sort of a nutritional balance account. I suppose it’s to know when extra resources are needed, drips and such.

When Abbe was released out last week he weighed 3875 grams. That is, 25 grams less than when he was born. Instead of having gained the half kilogram or so that would be normal during your first three weeks, he’s lost a little weight.

We’ve kept taking notes. Not the nappies, we don’t give a shit about them (haha). But we do keep record of how much he eats. Feeding times are still complicated and time consuming. One time runs into the other in a marathon-like blur and it’s hard to keep track of how much he actually eats. So I sat down at the computer and put together a cardex of our own. It might seem a on the edge, but I figure it's better to be safe than sorry.

My brother. My very own little brother.

At home.

What can I say? Wonderful and scary at the same time.

Stretching the limits.

It’s been three weeks since we got here. Three long weeks since we came stumbling in to room 3. What a roller coaster ride it’s been. News, chock, waiting, surgery, fear, calm, more news, chock, waiting, waiting and yet more waiting.

The surgeons had planned for Abbe to have a saturation-level of 80-85% after surgery. There have been several theories on why he’s not getting more than 70-75%. One is that his blood vessels might have “cramped” a bit after surgery. That they’ve not been used to the larger flow of blood that the correction brought on and responded by contracting somewhat. That sounds plausible to my layman ears. So they’ve been waiting for it to change.

Two weeks have passed and it still hasn’t. The saturation-meter (the pox) has been on constant alert. “Ah well, 70% will have to do”, said the doctors and lowered the alert-level on the meter.

– Well now it doesn’t beep, they said, you’re free to go home.

Cutting the cord.

I don’t know if you have children. If you’ve experienced that peculiar feeling when you’re leaving the maternity ward and suddenly realise that it’s for real.

In hospital it’s all so well laid out. Food is served at set times, midwives help out, telling mommies how best to feed their babies. How do you wash the sore from the umbilical cord, how do you change nappies and what about the vitamins? They know such things. It’s like checking in to a theme-hotel. “Welcome to the Mum-dad’n-baby-inn – the hotel with full family focus”.

Then you get home. You walk through the door of your own home, your furniture, your bathroom and your CD’s. That’s when it dawns on you. “Shit, he’s staying here now!”. You can’t leave him (or her, for that matter) back, he’s for real. We’ll have to manage on our own now. Without the theme-hotel midwives.

If you’ve been there, I’m sure you’ve also been through the phase where you spend most of your waken hours watching your baby. When you peep into the cot over and over again, just to make sure they’re breathing. At least eighteen times a day.

I’ve been there. I already have a son. One without a heart condition. Here’s what I’d like to know: how the hell do I find the courage to bring Abbe home?

With a little help from my friends.

Bunny Rabbit holds the oxygene funnel.

Percentages.

The oxygen-muzzle is gone. As is the probe. If you ignore (a contradiction in terms) the Von Rosen splint, Abbe almost looks like a normal baby now. Except for the huge scar across his chest, that is.

It’s nice to be rid of the probe. He can now be bottle-fed. It’s a hell of a struggle, though. Requires a lot of patience. 70-80 ml of mother’s milk will take between half an hour and an hour. By that time he’ll soon need to be fed again. But so be it. I desperately want him to learn. They’ve told us that heart-children often have feeding problems. So do DiGeorge-kids. Jackpot.

And. Like I said, no more muzzle. The small amount of oxygen he still needs is given to him through a funnel. As far as I understand, that’s what we’re waiting for now. For the oxygen-saturation level in his blood to rise. When it does, we’re going home.

This is how it feels some times. More focus on the pox than on Abbe.

Blues.

“Abbe’s not going to be a handicapped child, if that’s what you’re asking” How many days since I wrote that? When did the surgeon say it? 19th of March.

That was then.

The burden of knowledge.

I talked to my big sister yesterday. She happens to be a pediatrician. I told her about our meeting with Solveig and about Abbe’s diagnosis. My sister had heard of Solveig and she also knew some things about the 22q11-deletion syndrome, but because it’s a rare syndrome she needed to read up on it. She said she’d find out more and get back to me. That’s nice. She’s on two jobs here, half professional, half sis.

When she rang with a few links this morning she asked me to take all of it with a pinch of salt. “You have to keep in mind that in this information they’ve gathered all the symptoms that they’ve found in all the children with this syndrome. That’s a lot. That does not mean that all the children will have all the symptoms.”, she said, “Don’t panic when you read it, Abbe might never show any symptoms other than his heart condition”.

I read. And read again. For each word concentrating harder on what my big sister had told me.

Feeling guilty.

I was hit by a strong feeling of guilt today. All over sudden I realised how many times I’d used words like mongoloid or retarded in an incorrect manner. “ This computer is f-ing retarded” on a slow laptop or “He’s a mongoloid” on a person you don’t like. God what a lousy fellow human being I’ve been.

Or, at least, what bad use of language. Because, ashamed as I might be right now of the way I’ve expressed myself at times, I’ve meant no harm by it. I mean I don’t dislike people who are mentally challenged or have Down’s syndrome. Just like I don’t dislike some of my best friends who are homosexuals. Even if I've made silly jokes on the subject at times …

Time to wisen up. Isn’t it weird though, what it takes for you to realise what a dumb-ass you’ve been?

Solveig.

Granny and Grandad had to come through again like all the other times, these past two weeks. They promised to stay with big brother while my wife and I talk to the 22q11 specialist.

I had told my loved one, she had cried and I comforted. I had tried to see the good in knowing things in advance, being prepared with all sorts of questions. We had had some time since that other doctor gave me news earlier today. I’m not sure it helped.

Eventually a woman arrived. She had reddish hair, a white doctor’s coat and a singing Icelandic accent. “Hi, my name is Solveig, are you Abbe’s mum and dad?” She looked at Abbe for a while, and then gave him a little pat on the cheek with the back of her index finger. She sat down on a chair opposite us and started talking.

Catch22/DiGeorge is an unusual type of chromosome deficiency. There are about 20-30 children born each year in Sweden with this diagnosis. How severe problems it'll result in, varies widely from child to child. Apart from the physical problems such as heart conditions, cleft pallet, immune system trouble, lack of calcium, hearing or sight difficulties, there might be difficulties in concentration and learning disabilities later in life. I heard her mention ADHD, autism and more but I found it so hard to focus that most of it passed without reaction.

“I’ve met so many children with this diagnosis and they’re all lovely”, said Dr. Solveig. She seems a sweet enough person and I’m sure those words were meant to comfort us but they seemed to have the opposite effect. She left us there with lumps in our throats that were becoming impossible to swallow.

In spite of all the time we’d had to prepare I don’t remember asking her a single question.

More tears.

There I was, all alone, with the news of Abbe’s syndrome thrown on me. I would have to tell my wife shortly. Should I ring her straight away or wait till she comes in to take over? It was going to break her, I knew that.

The last two weeks we’ve spent so much time crying and for some reason I’ve taken on the part of the strong one. He who holds and comforts. Who says, “It’ll be all right” when she loses faith. And for some reason I’ve managed. I've become stronger. As if it were a task designed for me, where I absolutely must not fail. Maybe that’s how I function – focusing with the task at hand. Or it might be the way we work together, as a couple. When one stumbles, the other steps in to support.
I hope so.

Tough news – part two.

I was staring at the pox (pulse oxymeter) that’s connected to Abbe. It measures the level of oxygen-saturation in his blood and the reading hovers around the alarm level. Every now and again it beeps. By now I know how to cancel the alert and I do so again. As long as it goes up again, as it usually does, there's no need to alert the staff. Then they’ll just have to cancel the alert instead.

There was a knock on the door and one of the doctors on entered. “Hi, just you and Abbe here today?” she said. “Yes, my wife is at home with Abbe’s brother, she’ll be along later”, I explained. “Right, I wanted a word with you. Is that OK? Even if your wife’s not here?” she asked. I supposed it was.

– Do you remember the test we did on Abbe, when you first came here?
– Mhm.
– Yes eh, the chromosome test.
– Mhm.
– Well, we have the results from it now and it shows that Abbe has a chromosome deficiency.
– What?
– It goes under the name of CATCH22 or DiGeorge. Or 22q11-deletion syndrome.
– 22q…what?

I wanted to shout at the top of my voice “Take your f-ing shit syndrome and go to hell! Abbe’s got a heart condition and something wrong with his hips and that’s already more than enough!” I wanted to stand up, leave the room and kick at anything and everything that got in my way.
Instead I mumbled, in a thin voice:

-Mhm…but…what does it mean?
-Well, hm, he might have learning difficulties. Some have a lowered immune-defence and some…eh..do you know what?
-No.
-There’s a doctor in this hospital that specialises on this particular diagnosis. I could ask her to call on you this afternoon, when your wife is here too. She’ll be able to answer all your questions. All right?
-Yes…all right.

I’m sorry.

I might have been a bit rough on the orthopaedists the other day. I do understand that it’s good for Abbe’s hips to get the right support at an early stage. But still. There’s a difference between heart-people and bone-people.

I stand by my opinion.

Despair. And hope.

There was this tough little guy in room 3 with Abbe, I'd guess six years old. A couple of days after his surgery his parents and the staff were helping him get out of bed. Watching that hurt. He was transformed into a pitiful little boy, squealing with fear of the pain. I couldn’t help but wonder will Abbe have to go through this at some point?

But then, day before yesterday, just a few days later, there he is wrestling with his sister on the corridor floor. That’s hard to beat. Watching the children in the ward making speedy recoveries is reassuring. So is talking to their parents, sharing their experiences. Their stories of happy little ones, bursting with energy, provide you with the strength to keep going.

Cosy.

The joy of splashing around in warm water. No nappies, no splint and no wires.

Abbe’s having a bath!

All the wires and stuff are gone, except for the tube and the oxygen-muzzle. Great! They’ve even taken the big bandage off the scar. All he has now are those surgical-strips, or whatever they’re called, to keep it safe. And it’s time for a bath.

But because Abbe has his Von Rosen splint (you know the thing for his hips) we need to go to the orthopaedic ward to bathe him. He can’t have a bath with the splint on since there’s not meant to be any moisture inbetween the thing and his skin. After the bath, when he’s nice and dry again, it takes an orthopaedist to put the splint back on.

But still. He’s having a bath.