Bäei ääiin keeuo.

We meet a doctor and a psychologist at BNK (Pediatric and neuropsychiatric clinic) to investigate whether Abbe has any autistic or AHDH symptoms. This is one of the bigger clouds on my Abbe sky. I’m hoping.

So today, it was time for a test. Abbe sat down on a chair, at the psychologist’s desk. I know. It sounds utterly mad. Can you really sit down an eighteen-month-old child at a desk, like you would an adult about to be examined? Answer: Yes.
I was mighty surprised. He sat completely still on a Tripp Trapp-chair and did everything he was asked to do.

The psychologist made him play with various things, he stacked them, sorted them, put the right shape in the right hole and the correct colour in the correct box and so on. But when he got to the listening comprehension test, it all got slightly bizarre. This psychologist had a very broad southern accent. One of those I can hardly understand – me being from Gothenburg.

In front of Abbe were a lot things and he was asked to pick the things she asked for.
– Abbee, wherrrezz the choirrr?? Puzzled, Abbe looked at her.
– Wherrrezz the toiiiblle? Abbe looked at us, still confused.

Chair and table are words Abbe knows. We know that, from home. The psychologist tries a bit of anatomy instead. That’s the standard play back home “Where’s dad’s nose?” and “Where’s Abbe’s ear?” and so on. This will be a piece of cake, I think to myself.

– Oiii keiyyyy, Abbee. Wherrrezz yerrr earrrr? Abbe is now trying to make eye contact with us, “help me out here”.
– Wherrrezz yerrr oyye, Abbeee? Abbe looks helplessly at us. "Eh?"

I wonder what the outcome of all this will be? “The patient shows great difficulty comprehending speech”. We’ll see. I found it hard not to explain to him, in Swedish. He knows this. But I kept away from the test. And I managed to keep from laughing. But it wasn’t easy.

Anticlimax.

He was meant to ring between half past three  and five o’clock. We’d been given a time. He’d be ringing to give us the results from the gastroscopy, and we were just to wait by the phone. The doctor was to ring and tell us whether or not Abbe would ever be able to eat food containing gluten. Do you think he did?

Not a sound from the phone. I must have checked the time of day a hundred times but I didn’t dare ring home, didn’t want to keep the line busy. At ten past five my wife rang.
– Did he ring? I asked before she’d even said hello.
– No.

That really ticked me off. “How the hell can they expect you to go around, for an hour and a half, nerves on end, waiting for a f-ing phone call that never comes?! I’ll ring him.”

After a bit of research I managed to get through to the right doctor through the hospital switch board.
– Hello. This is Abbe’s dad. You were meant to call us.
– Yes, ehrm … Let’s see now … ehrm … if I can find the papers …
– I’ll hold.
– Ehrm … I don’t seem to … ehrm … have the results yet.

But for gods sake, they booked the time, shouldn’t they at least have their papers in order?

– No, ehrm … I have no … ehrm … answers.
– Right. Can you find some then, and call me back?
– I don’t think so … ehrm … at least not today.
– Fine. Tomorrow, then.
– Ehrm … I’m kind of busy … ehrm … for the rest of the … ehrm … week. And then … ehrm … I’m on … ehrm … holidays until christmas. We’ll have to … ehrm … book a new … ehrm … time. After Christmas.
– After Christmas?!?
– Yes … ehrm … allright?

Idiot.

At the photographers.

We were having a few photos taken, Christmas gifts for the grandparents. We went to a photographer I’ve worked with, called Anna. It wasn’t all together easy to get the model of the day to stay put, in front of the camera. Abbe was all over the place. Pressing buttons and peeing on the props. The pictures turned out well, though.

Junkfood.

Right. Junkfood is bad for you. It’s a well known fact and has been the topic of many a debate. Films like “Supersize me” serve to clear away any lingering doubts. Too much fat, too much sugar and not at all GI.

Every good parent knows to keep their young ones as far away from the whole thing as possible. There. But most parents also know that children love the stuff. Dilemma.

After struggling for a year and a half with Abbe’s eating we happened, one day, to visit Mac Donald’s. Abbe had a Happy Meal. Abbe loved it. He took his time, each french fry got it’s fair bit of attention and he ate it all. Every bit of food, every sip of coke. On his own. Happily. We didn’t stop at the one visit, or the one fast food chain, for that matter. But there’s always that sting of bad conscience, it’s not the healthiest of options. Fat and sugar.

“Cut out the conscience crap”, said my sister (the pediatrician, remember?). “Fat and sugar, there’s plenty of energy in that?! And  isn’t that just what Abbe needs the most? Energy? Just relax and enjoy the fact that he’s eating.”

So be it.

Anaesthetic mask.

Trying to put a needle (for the peripheral venous catheter) in Abbe was, as always, adventurous. And this time it just wouldn’t work. No needle. We have a few favourite nurses in ward 323, they know exactly how to get the needle in place, almost always on the first try. But the rest of them haven’t really got a clue. And when clueless they pull out the mask. I sometimes wonder why the bother at all, with the needle bit, I mean. The mask is there, isn’t it? But I think they’ve somehow got more control over the intravenous procedure.

When Abbe opened his eyes he was as pitiable. His throat all sore after the intubation (respirator) and gastroscopy (camera in tube down throat) and his eyes filled with silent accusation. How can you let them do this to me? Mum? Dad?

Good question, that.

Gluten.

The doctors on the nutritional team suspect Abbe’s not only allergic to milk but to gluten aswell. They think he’s having a hard time getting all the nutrition out of what he actually eats. That he’s not growing fast enough. I don’t know. I mean, honestly, he doesn’t eat that much, mightn’t that be the problem?

I desperately hope they’re wrong. They took two blood samples, one indicated a gluten intolerance. And here’s me finding the milk allergy hard enough to deal with.

Abbe has a cousin who’s gluten intolerant, when they meet we’re all kept on our toes. Cousin musn’t under any circumstances get to the crumbs from Abbe’s biscuit and vice versa. Granny dives under the table with a broom whenever something edible is dropped on the floor.

Anyway, the doctors are looking into it. Gastroscopy appointment set for tuesday.

Writing off the hip problem.

Good stuff! One item cleared off the list. We saw the orthopaedist today, back for the last check-up after Abbe had started to walk, which he’s been doing for a while now.

He passed. Both the x-rays and the results from the “pulling-of-the-hips” test looked good. Abbe’s well again.

At least his hips are.

The eyes.

How does one check the eye sight of a tiny toddler who’s not yet able to read? Or even talk.

– Please read what’s on the bottom line.
– ?!
– Right, how about the line above it?
– ?!!

No, that won’t work. But there are methods. First you trick the one and a half year old into looking through the big binoculars, somehow. Oh, so that didn’t work? Scared him, did it?

Right, well then you make the child look at something intreresting, wide eyed and completely still… Meanwhile you use the laser gun like instrument and shoot a ray straight into the little eye. And, believe it or not, that worked. But it took a dad’s lap to sit on, a nurse to wave a funny toy over another nurses head, that other nurse aiming and shooting the laser thingy.

Abbe was shown pictures of lines which, after looking for a while, could be made out to be figures. He looked, and the doctor held different prisms in front of his eyes. When Abbe reacted to having seen something, she changed the image and the prism. Don’t ask me how she knew if he’s astigmatic or not, but she seemed happy enough with the whole thing.

Many 22q11 children have problems with their eye sight. Being cross-eyed is a common one. The doctor tried that one by holding a pen closer and closer to Abbe’s nose until he looked completely cross-eyed. She was happy with that to. Strange. I thought the whole point was for him not to cross his eyes?!

And so, finally, the letter board. But instead of D’s, G’s, O’s and S’s it had pictures on it, in varying sizes. Larger at the top and smaller at the bottom. Abbe was to tell them what he saw. Well, telling as in signing some and trying to say the namne of others. The ones he didn’t get were just left.
Conclusion. Abbe seems to have good eye sight. We’ll come back when he’s older, for more tests.

Brothers.

Lisa and the sandwich.

There is a girl in big brother’s pre-school called Lisa. She loves Abbe and always has a hug for him when we come to leave or pick up his big brother.

The children usually bring sandwiches or fruit for the morningtime. About a week ago, Lisa was at the little table having a sandwich when Abbe joined her. She offered him a bite, of course, but one of the teachers, who knew about his milk allergy, stopped her and explained the matter.

On the way home in the car Abbe tried to communicate something. My wife was doing her best to get the picture and after about twenty questions came to this conclusion:
– Is it a sandwich that you want?
– Mhm. Abbe nods his head.
– Like Lisa’s?
– Mhm. Smiling now.

She made him a sandwich resembling Lisa’s. Abbe ate. He ate the whole thing. No fuzz, no desperate stuff like parental bribing or playing while eating, no nothing.

This is a serious breakthrough. Thank you Lisa.

Green stripe pyjama boys.

Sign language.

Abbe will be late in speaking. They always are. (Feels odd, speaking about children in that manner, ones own in particular. Like a herd. A race. People like him.) Anyway, children with Abbe’s syndrome are usually late speakers.

There are several reasons for that, one being the submucosal cleft palate that Abbe and most of his 22q11 friends have. So it’s not just a psychological thing, it’s technical or rather anatomical aswell.

To help Abbe along, we’ve started using support-signing. It’s kind of a light version of the sign language. He’s into it big time and he’s incredibly sweet when he uses his signs. Sometimes it’s impossible to see what he’s on about, one has to do an awful lot of guessing and carefully look at the sum total of each given situation.

The other day, Abbe dragged a log of wood across our livingroom floor. It was almost the size of himself, and he struggled along. Eventually he dropped the berch-log at his mum’s feet and made the sign for  “fire”.

Getting a bit chilly in here, isn’t it? was his point.



(NB this is the swedish sign for fire)

Mun-H-Center (Swedish national orofacial center of expertise).

Doing the right thing is not always easy. Heart children can have a bad dental status for various reasons, as  I’ve mentioned before. On top of that poorly mineralised enamel and dry mouths often go along with the 22q11 syndrome. In other words Abbe’s teeth are very vulnerable.

But then there’s the feeding issue. The easiest time to feed Abbe  is while he’s asleep. And that’s not the cleverest of things teeth-wise. Then add the toothbrushing dilemma. Abbe is not exactly friends with the toothbrush and starts a small scale war everytime he sees it coming. How to do the right thing? Beats me.

We told one of the 22q11-specialists on Abbe’s team about our concearns – the dentist at Mun-H-Center at the Sahlgrenska Hospital. “Stop worrying”, she said “You’ve enough on your minds as it is. We’ll deal with the problems if and when they arrive.”

Tear-time again. This time out of joy. There are people who can handle people in this world. On top of being brilliant at what they do. Food for thought, huh, orthopaedists? ;-)

M, n and ng.

Did you kow that the sounding of all Swedish consonants but three require a blocking of the airstream between the mouth and the nose? No. Air. Allowed. Through. Or else it’s not a consonant. Not a right soundning one, at least. The three? M, n and ng.

Pieces fell into place when I was told about this at the speech therapist’s today. Abbe obviously has some sort of cleft palate. Not visible to the eye, probably something in the soft parts of the palate. I think it’s called a Submucosal cleft palate. No one has examined him as of yet, but with my new found knowledge on the sounding of consonants it seems likely.

That’s why Abbe says Mamma without a problem but not Pappa (I was beginning to get a bit jealous). And that’s why the s sounds a little like a sneeze when he says is (ice). He’s taken to the Norwegian word for icecream you see. Possibly to avoid the letters l and g, aswell (Ice cream in Swedish is “glass” and in Norwegian it’s “is”). Or because he’s allergic to milk. In Abbe land ice cream simply equals ice (“is”).

I want in!

A week in Corsica.

This is the life. A week in the sun with my mum and dad and big brother.

Eating with an audience.

We went to see a speech therapist today. Not really a speech one, as such, but one who works with the technical part of the matter. They wanted to see if Abbe had problems with his mouth motorics, if he chews and swallows properly and such.

We’d brought different types of food for him to eat while they watched. Felt a bit awkward, to say the least. The next step is for him to eat food containing contrast fluid sitting in an x-ray machine. As if this wasn’t weird enough.

Hearing test – revised version.

I was a bit upset yesterday. I know.

It took a nights sleep to realise that they were actually pretty cool at the ear doctor’s. When the meter test wasn’t working, they tried another method. Probably not as scientifically reliable, but still.

Abbe was put in a room with two boxes. One at his right and one at his left. Not many one year olds will accept wearing headphones or manage pressing buttons so they use these boxes instead. With an intricate litte reward system to go with them.

Beeps came from the two boxes at different times and Abbe was being carefully monitored. If he looked towards the beeping box a lamp with a funny figure would light on it, as a reward for him having done the right thing. Children love stuff like that, and they’ll want to get the box right every time.

Abbe got a fright, though. When the lamp lit up and the funny figure started jumping around, he started crying. The test was then done without the reward bit and Abbe’s hearing seemed good. We were asked to return in six months time to try the “thing-in-ear-test” again, maybe it’ll work out then.

You wish.

Hearing test.

Dear one year old. If you just hold still for a while, this man is going to put a little thing into your ear. You then have to sit still and be completely quiet for about ten seconds so that we can do this test. We have to check your ears, you see, since many children with your diagnosis have problems with their ears. Hold still now, and be quiet while I hold this echo sounder in your ear. For ten seconds.

What were they thinking?

Dearest big brother.

It’s not an easy job being the brother of someone who’s sick, for real. Abbe’s brother had to grow up so fast when Abbe was born. We ask so much patience of him, so much responisbility and consideration. Way too much to ask of a two year old, really. It hurts. He’s young.

Because things are the way they are around mealtimes, Abbe’s brother has had to step back an awful lot. If Abbe is to eat at all he needs peace and quiet.

When I sat down to feed Abbe today big brother came along. “Oh, are you feeding Abbe? I can go to my room if you like?”

Sweetheart. Your life shouldn’t have to be like this, you’re only two and a half.

Solveig’s posse.

Ever since Solveig took us under her wing, the amount of official looking envelopes in our letterbox has increased. All letters from any branch of the health care system will obviously raise the pulse somewhat, but these days most of them contain times for return visits, tests or examinations. Abbe is frequently examined by different members of the regional 22q11 specialist team.

And once more I realise how lucky we are to be living close to Gothenburg. I can’t remember how many different doctors and specialists Solveig sent letters of referral to, but it was quite a few. And as far as I understand, if you’re from some other part of the country they put all the times in a row, within a week or so. Which is nice, I mean that means less travelling, but the stress of it? Doing it all in the one go? Especially for the child in question.

Montessori.

When Abbe’s brother was born we signed him up for the local Montessori pre-school. It had been recommended to us by friends and we decided to try it out. Unfortunately he didn’t get a place there, gender qoutation and rules concearning siblings put a stop to that. Another option arose, a parents cooperative, and he’s been happy there ever since.

But when planning Abbe’s future and schooling, Montessori seems like a brilliant idea. If big brother had a place in that pre-school, Abbe would automatically get in, the sibling rules, right? So I got in touch and they could offer big brother a place in the autumn. Perfect! We said yes please and thank you and also put Abbe on their waiting list.

Big brother making sacrifices again. Leaving his friends in pre-school to give Abbe a better start. It’s not easy, this balancing act.

Hard.

Reduced capacity, slight retardation, possible learning disabilities. What the heck does that mean? I keep stumbling across words like these when I try to read up on Abbe’s syndrome.

I asked Solveig (the 22q11-doctor, you know), when I met her at the 22q11 society meeting, about this.
– How common are learning disabilities in the 22q11 children, Solveig?
– I’ll be honest with you. More or less all of them have problems. Approximately 50% are classified as retarded to some extent, but all of them do have problems with learning.

Did I really want to know?

Annual meeting.

It was kind of creepy. The 22q11 society had their annual meeting. It felt unreal.

One of the lecturing rooms in Queen Silvias Childrens Hospital had been put in order for the meeting, there were coffee and sandwiches, fruit and buns. All as nice as can be. But I felt like a UFO.

This is a small society run by a number of enthusiasts, with relatively small funds. After having gone through the obligatory paragraphs of an annual meeting, like elections for various posts, the chairman’s report, economic matters and such, it was time for the information part and the questions. And this was when I started feeling awkward.

I think I was the only one there with a child as young as Abbe. The questions brought up felt extremely far fetched. And unreal. I mean, Abbe’s not like their children, is he? My little piglet wont be facing difficulties like those, will he? No, this must be wrong.

During the break I just stood there listening to the others talking. They all seemed to know each other. With a sandwich in one hand and a cup of coffee in the other I stood – numb – listening to discussions about special schools, children asking questions on why they’re different, ADHD, Autism, you name it. It all melted in my head and formed one giant lump. A not so pleasant one.

Afterwards I talked to Solveig (the 22q11-guru) who had also attended the meeting. I told her I had trouble relating to the whole thing. She answered “Of course you do. Just take one day at a time. I think you’re brave for showing up here today.”

I’ll drink to that.

Happy first birthday, sweetheart!

Club activities.

Abbe is a member of two clubs, or societies. Or, rather, our family is. We became members of the Heart childrens association as soon as Abbe had undergone his first surgery. His obviously had a heart condition and it felt natural to join.

The other one was different. The chromosome aberration they told us that Abbe had, felt unreal and very distant. I mean, there are no signs of it yet, he’s to young for it to be noticed. Having said that, he has got very long fingers. We noticed that as soon as he was born and later found out that it’s connected to the 22q11 syndrome. But other than that, there are no signs.

We’ve been hesitant on what we’d actually get out of a membership in the 22q11 society. Besides, we try to maintain some sort of normality in our lives and not just hang out with other parents of sick children. Enough is enough. Does that strike you as odd?

We finally decided on joining, anyway, and their annual meeting is on saturday.
I’m going.

Heartwise.

The return visits we’ve been to since Abbe’s surgery in July, have all gone really well. His saturation levels have been up on 85% and his heart, the shunt and his vessels all looked fine on the scan (the
ultrasound).

All as it was planned, that is.

Lucia

December 13 is Lucia Day in Sweden. A tradition with white gowns, lit candles and children singing.

Abbe’s mother was out of town and we had a Lucia-do to go to at big brother’s kindergarten. There were a few things too many to keep in mind. Sitting on the floor with mulled wine, saffron lucia-buns, gingersnaps … A pointy star-boy’s hat that wouldn’t stay put on big brother’s head and an Abbe-lad who kept falling around the place whenever I tried to put down. On top of which I was meant to be taking photographs.

Necessity is the mother of invention.

One, two, three – shoot.

When margins are small one does not want the RS-virus or the flu. We’re well aware of it – been there, done that. So all heart-children are vaccinated against the RS and the flu.

The RS vaccine doesn’t fit into one syringe. It’s too big a volume, basically, to give in the one muscle at the one time. Giving two shots in a row wouldn’t be too clever either, the second one will not be welcomed by the little reciever. So they’ve a special trick to get it done.

Two nurses came in and prepared the vaccine in the two sepapate syringes. Wonder why, thought I. Then, all over sudden, “ Allright … one, two, three” and before we knew it they’d put one needle into each leg and the whole thing was over. Just like that.

It caught me by surprise. But it’s clever. One pain. One cry. Done.

It’s to be repeated thrice this winter, though.

Insurances.

Ever tried to insure a child with a congenital heartdisorder and a chromosome aberration? I have.

It’s common knowledge that one cannot get a life insurance after receiving a death sentence of some sort. That’s understandable. It just wouldn’t work. I mean, it’s a nice enough thought, making sure your loved ones are taken care of after your’e gone, but not for the insurance companies, there’s no business in that. That’s why we were somewhat relieved to have signed up for a Pregnancy-insurance and a Mother and Baby-insurance with Trygg Hansa, before Abbe was born. He was healthy, as far as anyone knew, when we signed up for it. Nice to know we’d be covered.

Or so we believed.

When we claimed the health-insuance part we were told that it’s not valid if the child has “congenital disorders or malfunctions…blah, blah…chromosome aberrations…blah, blah…i.e. Down’s syndrome and congenital heart disorders.” In plain English; all the times when you would really need the insurance.

In other words, completely useless, but a great way of getting customers straight after birth. After a couple of months you receive a letter with an offer of prolonging the insurance and letting it become an ordinary health and accident insurance for your child. And why not for the mother, while you’re at it?

I’ve done some research. An ordinary  health-insurance seems to be out of the question. Anything connected to the heart condition or 22q11 is excepted from tha insurance. It doesn’t take much to figure that that about covers everything we might need help with. What we can get is an accident-insurance. Abbe might fall of his bike or hurt himself in some other way so that might come in handy. There’s one exception, though. An insurance company with a different approach towards people with congenital disorders. ACE insurances, it’s called, and it’s not that big in Sweden yet.

Go ACE!

The dietist.

We’ve been seeing a dietist. It’s a constant struggle, trying to get Abbe to eat, and they’re helping us us find out the reasons for him not wanting to.

Feeding times are still 07, 10, 13, 16, 19, 23 and 03 and we still give him the milk-free substitute. We still take carefull notes on how many milliliters he actually eats, we dare not do anything else. We’ve also tried giving him puree. It's not going too well.

Why is this such a problem? Is it a technical thing? Does he have anatomical impediments? Mouth-motorics, cleft palate, all that stuff? It’s a huge stress factor, this constant struggle against the weight and length diagrams.

We told the dietist about our DIY-cardex, our lists of Abbe’s milliliters. She smiled and asked:
–How much does he eat in a day?
–Eh…700ml, we answered.
–And does it vary a lot, from day to day?
–No…
–Why don’t you stop taking notes, then, and relax a little? You know pretty well, don’t you? That he’s getting enough?

Sometimes you feel like a complete idiot.

Parenting classes.

The Centre of Children’s Cardiology in Gothenburg has launched a heart children parenting class project. For two nights, parents of heart kids receive information on all sorts of things related to our children, their conditions and our our situations in general.

A psychologist talked about how relationships are tried on the arrival of a sick child. On the difficulties of having a sick sibling and lots of other interesting things that can be considered and applied in our everyday life.

The dietist talked about how to get heart-children to eat (I wouldn’t mind a follow-up class on that subject) and gave tips on how to maximise the energyvalues of what little they do eat, in order to maintain a good balance. Lots of good tips. Especially if the child is not allergic to cows milk.

The therapist told us about different allowances we can apply for, about LSS (the Act on Support and Service for Persons with Certain Disabilities) and about insurances.

A dental specialist told us to take extra care in looking after our heart-childrens’ teeth. Due to small, frequent, all-hours meals and a poor enamel status due to lack of oxygen, they have a much higher risk of tooth decay and caries.

It was also a great opportunity to meet other parents in the same or a similar situation as ourselves. I hope they’ll keep this up. And develop it. Maybe they already have? Have you heard of classes like these?

Passing it on?

Approximately 90% of people diagnosed with the 22q11 syndrome have a nymutation, which means that the error in the genetic material appears for the first time with that person and has not been inherited. That’s how it worked with Abbe. My wife and I were tested as soon as it was clear that Abbe had 22q11. Neither of us were carriers.

But if one parent has 22q11 there’s a 50% risk of inheritance for children. So there’s a fifty-fifty risk that Abbe’s children will get the syndrome.

Is that burden too going to rest on his shoulders when he grows up and wants to start a family? I’ve done a good bit of thinking on this matter and felt rather sad the other day when I talked to my big sister (the pediatrician). She said: “Ah, give over, you can’t be worrying about stuff like that? What if he’s gay? There’ll be no problem then, will there?”

How true.

Christening.

Abbe was christened today. A lovely little family ceremony. Big brother thought it all right that Abbe wore a dress, but commented on it being a bit on the large side.

The priest was Icelandic and she happened to be aquainted with Solveig, Abbe’s 22q11 specialist. It’s a small world. Or Iceland is small. In Gothenburg.

To tell or not to tell.

We talked a bit, my wife and I, on the matter of what to tell people and what not concearning Abbe’s chromosome aberration. I mean, we’re all prejudice. If I say chromosome aberration people hear mongoloid, retarded and so forth. We simply don’t know enough. And to be honest, I didn’t know of many chromosome aberrations but Down’s syndrome, before Abbe was born.

What we don’t want is to give people a set idea of Abbe as a person, risking thet it be self-fulfilling. Like “you become what you’re being treated as”, if you get my point. If we choose to tell, will pre-scool staff, scools, friends and aquaintances see Abbe for who he is or will they be searching for handicaps?

On the other hand, if we don’t tell, they’ll notice anyway. Without a diagnosis, a name for it and an explanation, they might just find him odd. When you know you know. Imagine the amount of explaining one would have to do otherwise.

And yes, you’ve probably guessed what conclusion we came to. So now everybody knows. Including you.

Food – a battle.

We don’t give Abbe breast-milk anymore. My wife stayed at it for a very long time, but there has to be some sort of a limit. We’ve left the pump back and our basement is full of jars labeled Profylac. It’s a milk free substitute. Or, rather, it’s based on cows milk but the proteins in it have been tamperred with so that sensitive little tummies can deal with them. The consequence being that it tastes nothing like milk. It’s rather disgusting, as it were, undrinkable in my oppinion. Bitter as methylated. But milk free.

No wonder Abbe wont eat. On the other hand, he was just as reluctant when the yummy mother’s milk was on offer. They say feeding problems are common among heart children in general and 22q11 children in particular. So he’s kind of top scoring there, I suppose.

Sometimes he’ll slurp down his 130 ml of Profylac in less than a half an hour. Sometimes.On a perfect day. The right temperature, no colds, no blisters anywhere and preferably just the two of us, at home in our living room. Most of the times it’ll take an hour or more to get him to eat the smallest required amount. And a lot of the times he’ll end up screeching with panic, refusing to eat altogether.

Had he been an avarage baby, we probably would have left it at that. Thinking – Ah well, he’ll eat when he’s hungry. But it’s different with heart babies. He needs to eat every third hour to keep up with his weight and length curves. And he needs to eat a certain amount daily or the curves will (dala) even more.

It’s an ongoing struggle. Tough, tiresome and a constant source of stress and worries. Some days we’ll find ourselves (en hårsmån) away from giving it all up. What keeps us going then is knowing what the option is. Enteral nutrition. He’s not having food through a tube up his nose. Not if we can help it.

Childcare allowance.

I know. It’s not the first thing that springs to mind when you find out that your child is ill. But after a while, when the chock has settled and life starts trodding along, you realise. It’s not for free.

Medicins, special food, travelexpenses and parkingfees for all the trips to hospital and doctors, lost incomes and so on. And what’ll it be like in future? How much special care will he need? Will he be going to an ordinairy school? What’s all that going to cost? Will we be able to work full time?

At hospital they advised us to apply for childcare allowance. I had never heard of it til then. But still. It’s dealt out by the the Swedish Social Insurance Agency and anyone who’s ever tried to fill in one of their forms for parental benefit will understand how ominous this sounds.

After a few hours of thinking, twisting words and turning them, we’ve finally filled in all the pages of the application form, got the doctor’s testimony to go along with it, stamped it and posted it. I’ve been told that they’ll now call us to some sort of an interview, where we’ll have to tell the whole story once more. Effectiveness the Swedish Social Insurance Agency style.

Nuchal scan.

I found an interesting paper today, that I had completely forgotten
about. Before Abbe was born, my wife went to Linköping to do a so called
Nuchal scan. It’s an extended ultra sound scan where they take a closer
look at the thickness of soft tissues of the nape of neck of the fetus. They also
take a closer look at the heart. All to find out if there might be any
chromosome aberrations, Down’s syndrome, or the likes of it.

Our journal reads; “The risk of carrying a foetus with Down’s syndrome
was before the scan 1/190 (age risk) and after the scan 1/1573 (age +
NUPP 1.5mm)”

1 out of 1573. That’s a pretty small risk. But of course it doesn’t
mention the 22q11 syndrome.

On the other hand. Had the risk of having a child with Down’s syndrome
been 100%, he or she would have been just as welcome. And had I known
then that Abbe was to have the problems that he has, I still wouldn’t
have given it a second thought. No way.

How are you, Abbe?

Great. Let's go home then!

Mag3 scintigraphy.

Today, Abbe went through another examination of his kidneys. Or maybe that should be his kidney. They inserted a radioactive substance in his blood which went through his kidneys. He was given a sedative, to make him lie still in a gamma camera, which registered the radiation. The camera shot a frame a second or so, during around 20 minutes and the end result was a little blurred film which reminded me of the ones you see taken by thermal imaging cameras.

The aim of the examination is to show how kidneys take up the drug, and that it runs off as it should. And you could see quite clearly from Abbe’s little film that there was only one kidney, on one side. Apart from that, all was fine, as far as I understood. I guess we’ll see once the doctors give us their verdict.

I must admit it felt a bit weird when they brought along a syringe with one of those radioactive symbols which reminded me of my old Kraftwerk records, and injected it into Abbe’s bloodstream. But apparently, the dose was weaker than what you normally get during an ordinary X-ray or CT scan.

Hospitals are fun.

Abbe’s big brother gladly visits the hospital. It’s particularly fun to care for all the sick dolls and teddies in the Children’s corner. There are stethoscopes, ECGs, oxygen face masks, probes, syringes, dressings and lots of other things the dolls need to feel good.

Cow’s milk, no thanks.

I just remembered I forgot to mention one thing: Abbe is allergic to milk. We actually started to suspect this the first time he was admitted to hospital and now we know.

It all started with the lack of breast milk, at one occasion. Abbe’s mum was at home and had of course pumped out milk there, (using the pump we had borrowed from the maternity unit and kept at home), but our little stock in the hospital fridge was empty. So we mixed some infant formula milk, based on ordinary milk – and gave it to Abbe. After a while, he was vomiting like a calf.

Now, it’s not entirely unusual that babies vomit but our Abbe didn’t usually do that. And now, he was not that well. Since it’s not that easy to get enough nourishment into him the normal way, this was not particularly fun.

We tried a few times again later, with the same result. That’s when it was decided that in the future, he was to get a milk-free substitute when the breast milk wasn’t enough.

Congratulations!

Today, Abbe is four months old and was given a little teddy by the staff. They know Abbe almost as well as I do. I did a bit of counting, and came to the conclusion he had spent more than half his life at Queen Silvia’s Children’s Hospital. Well, I think it's time to grow out of these statistics now.

Coffee and sticky chocolate cake

Abbe has come back from Intensive Care and it’s very quiet on the ward. I think there are two families here, part from ourselves. Ida from Sundsvall and Adam from Värmland (think it’s Karlstad). As we are in the midst of the holiday season, only emergency ops are allowed now. All planned operations will have to wait until after July, when Sweden has woken up again.

Actually, it’s quite nice. You get to talk more to the other parents and the staff. Not that I feel particularly stressed here, normally. Absolutely not. But still, there is a big difference. The staff are fighting about who gets to ‘borrow’ Abbe. "Maybe you want to go for a walk? I can look after him while you’re away".

Today, one of the nurses was making a cake in the parents’ kitchen. A lovely smell spread across the ward. Then she came along with a trolley, filled with coffee and newly made sticky chocolate cake and whipped cream. We all squeezed together in the play corner sofas and had a really good time, Ida’s and Adam’s parents, the staff and myself.

Images from the intensive care unit.

They anesthesized Abbe with a mask, placed a peripheral venous catheter in his thumb...

...and the saturation meter in his cheek.

All values ​​are noted carefully on an observation sheet.

The incident with the heart-lung machine.

The operation went well. Not only did they widen the narrow pulmonary vessel, they also took the opportunity to swap the shunt for a larger dimension. In this way, they bought Abbe some more time, until his next operation. And that’s brilliant. It means he will have the time to grow, become stronger and that he will get some peace and quiet for a while. It’s hard to say how long it will take but – about a year is rather a realistic guess, as far as I understand.

But the surgeon also told us something which was not as fun. During the operation, you use a heart-lung machine. It oxygenates the blood and pumps it around the body. In other words, it functions as the patient’s own heart and lungs, but outside the body, thus enabling you to turn the heart off while operating on it.

Just as they were ready to turn the heart lung machine off and transfer the blood in it back into Abbes body, something unexpected happened. In some way or another, a little bit of air entered the system and with that, out in Abbe’s veins. This is not good. The surgeon did say he was pretty convinced it was such a small amount that it wouldn’t affect Abbe, but he couldn’t guarantee it. And he seemed a bit upset with the actual incident. "I have operated on children’s hearts for 20 years and never seen this happen before. Now we need to review our procedures, so it can’t happen again".

I tried to focus as much as I could on the positive. That the actual procedure had been successful. My wife didn’t quite manage this, and I pulled her closer to me, to comfort her as best I could.

An eternal wait.

When Abbe had his first operation, we were told not to wait on the ward. After a short walk, we just couldn’t keep away. So, we did exactly what they had told us not to do. The wait became unbearable, of course.

This time, we decided to follow the advice from the medical staff, in pure self-preservation. We just wanted to reduce the pain. Straight after that dreadful moment outside the operating theatre, we went to a café and had a proper breakfast. – Now, what do we do? The minutes dragged past and we just couldn’t take any more breakfast. A walk would not have been enough to dispel the thoughts. So, we went to check out some cars.

I know. It sounds weird and somewhat insensitive. But we needed something to concentrate on, so we didn’t have to think about Abbe, lying there on the operating table. After having visited several different car show rooms and even tested a Skoda, it was soon time for lunch. "They should be finished by now, shouldn’t they", we told each other. And yes, we were in total agreement that this was the case. After having stocked up on food and biscuits at a local super market we returned to the hospital. By the time we had unpacked, made lunch and eaten, it was around 1pm.

– It was good that we spent the whole morning away this time, we told ourselves. – We might even have time for another coffee before they call us to say they are ready. Proud of the fact that we had managed to keep away from the hospital for this long, we sat down and waited to be allowed up, to see our little boy. At 6pm, one of the surgeons came down to the ward. – They are stiching him up upstairs right now, he said. He told us what they had done and how it all went. Just before 7pm, we had a call from the intensive care unit, to tell us we could now come up.

Eleven hours after having left Abbe by the door of the operation theatre, we were now finally allowed to see him. With hindsight, we could have testdriven all the car models in the city, had we wanted to.

Surgery number two.

Just washed before surgery.

At seven o'clock this the morning arrived at the hospital.We washed Abbe with Hibiscrub (antiseptic soap that is used before surgery) and knocked back a couple of cups of coffee. The surgery was scheduled first thing in the morning, and just after eight we left him again at the doors of the operating room.

And at this point, I have to revise some of what I wrote earlier. The part about one becoming hardened. It does not apply here. Not the moment your baby is rolled in to the surgery center. At the risk of repeating myself and being a bit dramatic - it's among the worst things you can experience. I dare to say that if there is a "terrible-experiences-as-parent-list" this easily gets a top ranking. It doesn't matter how prepared you are.

You're not so tough in the elevator down from the sixth floor.

Soon time again.

The vacation in Denmark is over and the puzzling with babysitters for big brother starts. Since kindergarten is closed for the summer it all becomes a little bit extra complicated. The first days after the surgery we want to be at the hospital both of us, my wife and I. Later on we will have to take turns.

We checked in to ward 323 this morning. After a bunch of controls and the worst attemt to insert a needle on Abbe, we where finaly leaving the hospital for the night and come back for the surgery next morning. As a matter of facts Abbe never got any needle. They gave up after trying at least fifteen different places om his body. In the head, on his hands, arms and feet.

– We will have to anesthetize him with a mask instead tomorrow, they said. Samples before the operation they had to take capillary. In other words a little pricking in his finger and then squeeze out some drops. I am not looking forward to tomorrow.

Denmark

Our week in Denmark was fantastic. We had decided too relax, enjoy and have a nice time together. All four of us. We knew we had a tough time ahead of us, and that it might be quite a while until we would get another chance.

I promised myself to spoil Abbes brother as much as I could. He was going to get whatever he pointed at. He is really worth it after all he has had to cope with since he got his little brother. It was cheap. Some pails and shovels and an ice cream every now and then. I expect pledges like that to become more expensive in the future.

My wife and I agreed on not thinking about the coming surgery during this week. That, of course wasn't an easy task, but in some magic way we did it quite well. At one point we even managed to time both the boys to sleep in the buggy at the same time, so we could have a beer and a danish smørrebrød at a restaurant in the sun.