- Where do you find your strength? asked a friend. I really don’t know. Sometimes you do feel strong but most of the time you’re far from it. It’s a bit like the incredible Hulk, I suppose. When it’s really needed, you find powers within that you didn’t know you had. Hidden away in some spare energy tank inside. Good thing you don’t have to turn green and tear up your clothes.
There are times when it feels as though our part in all this is the easiest one. Compared to people around us, that is. It might sound weird. Abbe’s our little baby and obviously the fear and pain dig the deepest into our hearts and souls. But having said that, we’re right in the middle of it. We get to see him all day everyday, we get first hand information on his condition from the experts and we also receive the comforting that they’re so good at. We’re constantly working on it. Our loved ones receive messages on how he is and then they’re left there. With all the worry but without the help that we get.
Of course we have trouble finding that strength at times, but we’re doing all right. There’s no choice. You can’t quit; you have to bear with it. Being there for Abbe and finding the strength to give our other son as normal a life as possible. To comfort each other and be strong for our loved ones. We have to be prepared for setbacks and keep looking ahead. And we have to believe that Abbe will be okay and that one day soon he’ll be coming home with us.
How I look forward to that day.
31 March 2005
Support in life.
Lying on your side is good when you’re just out of surgery, but that's easy to say when you’re stuck with a VonRosen splint. Lucky are those who have a Teddy at times like this.
30 March 2005
What can you say?
I dropped by work today. They wanted to hand over gifts, offer congratulations and support. Interesting that, by the way. I’ve noticed that friends and acquaintances seem to find it difficult to relate to the whole thing. They want to congratulate us on the birth of our new baby. But they also want to tell us how immensly sorry they are about the situation that we’re in. They’re left standing there, like a donkey between two haystacks. The ”congrats” one and the ”I’m so sorry” one. And they haven’t got a clue what to say. Not at all strange, if you ask me. What would I have said? It’s great and so sad at the same time.
In any case, I was at work. We were sitting in our big conference room having coffees. They had bought gifts for Abbe’s big brother. Such a brilliant idea. He, if anyone needs an extra dose of encouragement right now. A huge box of Duplo (and a spare one, to be kept in the office, in case one needs to bring the children to work).
And then there was Abbe’s gift. He is, after all, the cause of all this. A tiny teddy bear and a card with two words that really got to me. ”Go Abbe”, it said. So well put. Everything you want said but have trouble putting to words, captured in just two. I swallowed and swallowed again, but the lump in my throat kept growing. I felt the tears coming and bent my head down and shut my eyes really tight.
Please let them be quiet now, I thought, I can’t answer any questions.
In any case, I was at work. We were sitting in our big conference room having coffees. They had bought gifts for Abbe’s big brother. Such a brilliant idea. He, if anyone needs an extra dose of encouragement right now. A huge box of Duplo (and a spare one, to be kept in the office, in case one needs to bring the children to work).
And then there was Abbe’s gift. He is, after all, the cause of all this. A tiny teddy bear and a card with two words that really got to me. ”Go Abbe”, it said. So well put. Everything you want said but have trouble putting to words, captured in just two. I swallowed and swallowed again, but the lump in my throat kept growing. I felt the tears coming and bent my head down and shut my eyes really tight.
Please let them be quiet now, I thought, I can’t answer any questions.
29 March 2005
Every-day-life at the 323.
This is becoming routine. After Abbe had left the 3-room we were given a room of our own, where one of us stays over night with Abbe. We take turns in staying here and at home. Abbe does have a brother, and he to needs us right now, probably more than ever. We’re more or less taking care of ourselves now; the staff comes in once every three hours, 24 hours a day, to run tests and make check-ups.
There’s a kitchen in the ward for parents. You keep food in plastic bins tagged with your child’s name in special parent fridges. There’s a jar where you put a Swedish crown for each cup of coffee you drink. When we’re out of coffee, we make some more, pour it into a thermos and put on a bit of tape stating the time at which the coffee was made. That’s about all there is to do around here to make time pass and keep your nerves in check. Drink or make coffee. Hence, the coffee here never gets a chance to become older than freshly made.
Anyway, it’s great to have an option to the poor excuse for food that is on offer in the cafeteria on the ground floor. We’d had enough of that after the first few days.
Today we cooked fresh pasta with pesto and sun dried tomatoes.
There’s a kitchen in the ward for parents. You keep food in plastic bins tagged with your child’s name in special parent fridges. There’s a jar where you put a Swedish crown for each cup of coffee you drink. When we’re out of coffee, we make some more, pour it into a thermos and put on a bit of tape stating the time at which the coffee was made. That’s about all there is to do around here to make time pass and keep your nerves in check. Drink or make coffee. Hence, the coffee here never gets a chance to become older than freshly made.
Anyway, it’s great to have an option to the poor excuse for food that is on offer in the cafeteria on the ground floor. We’d had enough of that after the first few days.
Today we cooked fresh pasta with pesto and sun dried tomatoes.
26 March 2005
Big brother’s visit.
Today big brother came to visit Abbe for the first time. It was exciting. He must be wondering. Why isn’t Abbe coming home? Why has he got a tube up his nose and sticky tape on his head? Why do I have to wash my hands with the smelly stuff that makes your hands go all cold before I go to see my little brother?
We’ve tried to explain things to him, as best we can, but how much of all this can he actually grasp? How much can a two-year-old possibly understand of what is going on? He’s only a baby himself.
25 March 2005
Abbe is breathing.
Back in the hospital after the early morning phone call we hurried into room three in the 323 ward. The calm, reassuring smiles of the staff did wonders for morale. He was back home again. Back from his adventurous excursion up on the sixth floor. ”He’s over there” said one of our favourite nurses, ”and he’s looking great”.
There are fewer wires on him now. They’ve taken away some of the drainage leading out fluids. One, I think, from where they operated on him, and the other from his left lung. The right lung drainage is still there. But most importantly Abbe was extubated late last night. That is, they took away the respirator that has been his external lungs for the past few days.
He’s now breathing on his own.
There are fewer wires on him now. They’ve taken away some of the drainage leading out fluids. One, I think, from where they operated on him, and the other from his left lung. The right lung drainage is still there. But most importantly Abbe was extubated late last night. That is, they took away the respirator that has been his external lungs for the past few days.
He’s now breathing on his own.
Help!
At three o’clock this morning our phone rang. Half asleep I answered it and a voice at the other end said
”Hello is this Abbe’s father? I’m calling from the pediatric intensive care unit at Queen Silvias Children’s Hospital”. My God! Why do they have to have such a long name, I thought. Get to the point. I was thrown, in a matter of seconds, from having been sound asleep in my bed, to a pulse of a 180 beats per minute. I was petrified. ”Speaking”, I said, ”what’s wrong, has anything happened?” This is when he realised what effect his phone call had had and he said, ”Oh, no, I didn’t mean to scare you. I just wanted to tell you that Abbe’s been moved to the ward now, I didn’t want you coming here tomorrow wondering where he’d gone.”
I don’t know. It’s a first for me. Having an infant in an intensive care unit having undergone serious heart surgery. A nightly phone call from the ICU is not something that I’m used to. Maybe I should’ve just put the phone down, been happy with the good news and gone back to sleep?
Maybe, but it scared the hell out of me.
”Hello is this Abbe’s father? I’m calling from the pediatric intensive care unit at Queen Silvias Children’s Hospital”. My God! Why do they have to have such a long name, I thought. Get to the point. I was thrown, in a matter of seconds, from having been sound asleep in my bed, to a pulse of a 180 beats per minute. I was petrified. ”Speaking”, I said, ”what’s wrong, has anything happened?” This is when he realised what effect his phone call had had and he said, ”Oh, no, I didn’t mean to scare you. I just wanted to tell you that Abbe’s been moved to the ward now, I didn’t want you coming here tomorrow wondering where he’d gone.”
I don’t know. It’s a first for me. Having an infant in an intensive care unit having undergone serious heart surgery. A nightly phone call from the ICU is not something that I’m used to. Maybe I should’ve just put the phone down, been happy with the good news and gone back to sleep?
Maybe, but it scared the hell out of me.
24 March 2005
Pain relief.
As recently as the 1960s it was commonly believed that infants could feel no pain and surgery would be performed without anaesthetics. Sounds unbelievable to me, but a nurse told us today. Considering that, 2005 seems like a pretty good year to have been born. Nowadays they’re working on a brilliant method of determining how the child is feeling and if, and if so to what degree, it is in pain.
On a three grade scale they try to evaluate things like frowns, squinting, tensions in mouth and tongue, shivering chin, arm and leg movements, breathing patterns, crying and consolability. If the sum total exceeds a certain number, they administer pain relief. The higher the number, the higher the dose, I guess.
On a three grade scale they try to evaluate things like frowns, squinting, tensions in mouth and tongue, shivering chin, arm and leg movements, breathing patterns, crying and consolability. If the sum total exceeds a certain number, they administer pain relief. The higher the number, the higher the dose, I guess.
Lots och technology for a small heart.
Automatic pumps for metering various medicine into Abbes bloodstream.
This machine measure a lot of things, including pulse, blood pressure, oxygen saturation in the blood.
Pain relief.
Respirator - Breathing for Abbe.
Abbe at PICU on the morning after surgery. 8 days old.
Pediatric ICU.
Abbe has gone through surgery. He’s in the ICU – the intensive care unit – and is under the circumstances all right. That’s not something I can make out for myself; all I see is my loved one, conked out behind a colourful nest of wires and tubes. But that’s what they’re telling us. ”Everything looks well”, they say.
I’m not really that worried now. Of course I’m sad that we’re in this situation and I wonder where it’ll all lead. But people are so professional around here and I trust them to 100%. I mean, they’re doing what they’re experts at, what they’ve been trained to do for years and what they have done so many times before. It’s all beyond me anyway; I can only watch them doing it. As a by-stander. But every now and again I can’t help putting my nose to some square inch of Abbe’s skin, visible through all the equipment, just to smell him.
Abbe’s bed and its surroundings would remind you of a cockpit. The respirator, EKG, pox-, blood pressure- and pulse meters, pacemaker and automatic pumps with calcium, morphine, glucose and such. Moreover a number of tubes with oxygen, pain relief and other stuff that he needs. From his body a catheter and different kinds of drainage tubes. And there’s a grand buffet of drugs on offer, so that he’ll never be in pain. I’ll tell you more later.
Right now I will just sit here and look at him.
I’m not really that worried now. Of course I’m sad that we’re in this situation and I wonder where it’ll all lead. But people are so professional around here and I trust them to 100%. I mean, they’re doing what they’re experts at, what they’ve been trained to do for years and what they have done so many times before. It’s all beyond me anyway; I can only watch them doing it. As a by-stander. But every now and again I can’t help putting my nose to some square inch of Abbe’s skin, visible through all the equipment, just to smell him.
Abbe’s bed and its surroundings would remind you of a cockpit. The respirator, EKG, pox-, blood pressure- and pulse meters, pacemaker and automatic pumps with calcium, morphine, glucose and such. Moreover a number of tubes with oxygen, pain relief and other stuff that he needs. From his body a catheter and different kinds of drainage tubes. And there’s a grand buffet of drugs on offer, so that he’ll never be in pain. I’ll tell you more later.
Right now I will just sit here and look at him.
23 March 2005
Surgery.
I have had the worst moment of my life.
At four o’clock this afternoon we took the elevator from ward 323 to the sixth floor. That’s where the surgical ward is located. Abbe was in my arms when the anaesthetics nurse connected the soporific to the needle in his scalp and slowly I felt him getting limp and heavy. I carefully put him back into the big crib, we kissed his forehead and said goodbye. Then my little being was wheeled, sleeping, through the doors marked ”surgery” and I died.
I don’t recall ever being so tired. Had I been awake for three subsequent days and nights and ran the New York marathon a couple of times in a row I would have been left with more energy than at that point. It was as if someone had punctured all my energy supplies in one blow. And all the spare ones. When the doors of the elevator closed, we fell into each other’s arms and cried.
Loudly, desperate and catharsic.
At four o’clock this afternoon we took the elevator from ward 323 to the sixth floor. That’s where the surgical ward is located. Abbe was in my arms when the anaesthetics nurse connected the soporific to the needle in his scalp and slowly I felt him getting limp and heavy. I carefully put him back into the big crib, we kissed his forehead and said goodbye. Then my little being was wheeled, sleeping, through the doors marked ”surgery” and I died.
I don’t recall ever being so tired. Had I been awake for three subsequent days and nights and ran the New York marathon a couple of times in a row I would have been left with more energy than at that point. It was as if someone had punctured all my energy supplies in one blow. And all the spare ones. When the doors of the elevator closed, we fell into each other’s arms and cried.
Loudly, desperate and catharsic.
The D-day.
Today my little sweetheart goes into surgery. One week old. It’s said that the size of your heart equals the size of your fist. I keep thinking of Abbe’s tiny seven-day-old hand.
I think of nothing but that.
I think of nothing but that.
22 March 2005
Mc Donald’s is great but there’s no place like home.
We’ve checked out of the maternity ward. It’s a relief being away from all the happy parents holding baby bundles. Don’t get me wrong. I don’t begrudge them. Not at all, I have my own bundle, even if I can’t hold him as much. Especially not with his VonRosen splint. It’s a bit like carrying a small box. A lumpy and unsteady little box. With a needle in his scalp, a tube up his nose and an assortment of wires connected to his hands and feet. But it’s nice, still, to be away from all the looks in the maternity ward. The knowing looks, head tilted, from the staff and the questioning looks from the other parents, eyes nervously searching for the baby we’re meant to be wheeling around.
We live just fifteen minutes from The Queen Silvia Children´s Hospital. Thank God. So now we sleep at home and spend our days in the hospital. But imagine coming from another part of the country, having to move your whole family here for the length of the hospitalization period. Maybe having to spend weeks, or months, in the Ronald McDonald house. What a bother. Good that it’s there, though. The house is great and welcoming in every way. And I’ll never eat at Mc Donald’s again without leaving my change in the little plastic box by the cash registers. But there’s no place like home.
We live just fifteen minutes from The Queen Silvia Children´s Hospital. Thank God. So now we sleep at home and spend our days in the hospital. But imagine coming from another part of the country, having to move your whole family here for the length of the hospitalization period. Maybe having to spend weeks, or months, in the Ronald McDonald house. What a bother. Good that it’s there, though. The house is great and welcoming in every way. And I’ll never eat at Mc Donald’s again without leaving my change in the little plastic box by the cash registers. But there’s no place like home.
Cardiologists and orthopedists.
I don’t care what they say; there is a difference between doctors and doctors. Here in the children's cardiac unit, people are (apart from obviously being scientifically skilled) equipped with a huge dose of warmth and sensibility. That, unfortunately, cannot be said about orthopedists. I’m aware of the fact that I’m sticking my chin out, and that I may well get a mob of angry orthopedists on my tail, but it has to be said. They seem more like car mechanics to me. Technicians. There to fix an object. Hammers and nails, saws and screwdrivers, bang on. The fact that there is a person stuck to the other end of that broken arm does not seem to bother them.
Today, three people from the orthopedist unit came charging into room three. ”Where’s Abbe? We’re equipping him with a Von Rosen splint”. Abbe has, on top of his heart condition a congenital hip dislocation. That means that one or both of his hips were dislocated at birth or will dislocate easily. The paediatrician in Borås mentioned it at the first routine check but with the chaos that then emerged we had simply put it on hold, left it to be dealt with later. Anyway, the condition as such will require Abbe to wear one of those splints for a couple of months.
Abbe’s heart nurses tried their best to convince the orthopaedist troop that he’s going into surgery tomorrow, he’ll have to be washed thrice with disinfectant beforehand and under no circumstances can the splint be left on during surgery. ”Can it not be left until after surgery?” pleaded the staff from ward 323. ”No. Every day won at the start will save weeks at the end of treatment” was the robotlike answer given by the orthopedists.
My wife ran out of the room crying. ”Now, now, it’s not such a bad thing, this splint,” said one of the mechanics. But with just an ounce of empathy she could have figured out that it was not the bloody splint that was causing the outburst. That a congenital hip dislocation is a piss in the ocean compared to what Abbe has in store for him. That she was in a ward, with new parents who mightn’t be in the most stabile or happy of conditions. That their charging in might actually have been the straw that broke the camel’s back. But that ounce of empathy was sorely lacking.
The splint was coming on.
Today, three people from the orthopedist unit came charging into room three. ”Where’s Abbe? We’re equipping him with a Von Rosen splint”. Abbe has, on top of his heart condition a congenital hip dislocation. That means that one or both of his hips were dislocated at birth or will dislocate easily. The paediatrician in Borås mentioned it at the first routine check but with the chaos that then emerged we had simply put it on hold, left it to be dealt with later. Anyway, the condition as such will require Abbe to wear one of those splints for a couple of months.
Abbe’s heart nurses tried their best to convince the orthopaedist troop that he’s going into surgery tomorrow, he’ll have to be washed thrice with disinfectant beforehand and under no circumstances can the splint be left on during surgery. ”Can it not be left until after surgery?” pleaded the staff from ward 323. ”No. Every day won at the start will save weeks at the end of treatment” was the robotlike answer given by the orthopedists.
My wife ran out of the room crying. ”Now, now, it’s not such a bad thing, this splint,” said one of the mechanics. But with just an ounce of empathy she could have figured out that it was not the bloody splint that was causing the outburst. That a congenital hip dislocation is a piss in the ocean compared to what Abbe has in store for him. That she was in a ward, with new parents who mightn’t be in the most stabile or happy of conditions. That their charging in might actually have been the straw that broke the camel’s back. But that ounce of empathy was sorely lacking.
The splint was coming on.
Crammed at the PICU.
It seems odd that you have to wait for days for a surgical procedure this important. It’s comforting to know that as long as Abbe gets his Prostivas (that is what the prostaglandin drip is called) he’s in no danger. Or so they tell us. He’s next on the list with the surgeons. Because it’s an emergency, he will be put ahead of all planned surgeries. It’s just that the pediatric intensive care unit is crammed at the moment. And when that happens they don’t perform surgeries other than in cases of extreme emergency. With his drip Abbe does not fall under that category.
But just a minute ago, Abbe’s nurse came to tell us that the operation is planned for tomorrow.
Relief! Anguish!
But just a minute ago, Abbe’s nurse came to tell us that the operation is planned for tomorrow.
Relief! Anguish!
21 March 2005
Waiting.
We waited nine months for Abbe to come into life. Here we are now, waiting for surgery to keep him here. It’s heavy at times.
Really heavy.
Really heavy.
Costly drops.
Abbe is not breastfeeding. It’s too much of an effort for him. His mother has made many brave attempts but it doesn’t seem to be happening. He is struggling just to stay awake, the poor thing. Sucking and working to get nutrition would be too much of a strain on him. It would cost more energy than it gave, so to speak. But mother’s milk is very nutritious, so my wife (who is just beginning to make her way around the place without a wheelchair) pumps it out and stores it in bottles.
They provide you with electric pumps to simplify things. I understand it’s hard enough as it is. The pump brings cows and farming to mind, a thought I haven’t shared with my wife. She’s working like hell, I feel for her. The milk bottles, tagged with the baby’s name and the time at which the milk was pumped out, are kept in a fridge. When Abbe’s feeding time approaches, we heat the milk up and feed it to him through a bottle. Well, the tiny amount he has the energy to eat. The rest of his minimal requirement, we give him through a tube. This was pretty hard to get used to, but I’m getting there. I have to.
They provide you with electric pumps to simplify things. I understand it’s hard enough as it is. The pump brings cows and farming to mind, a thought I haven’t shared with my wife. She’s working like hell, I feel for her. The milk bottles, tagged with the baby’s name and the time at which the milk was pumped out, are kept in a fridge. When Abbe’s feeding time approaches, we heat the milk up and feed it to him through a bottle. Well, the tiny amount he has the energy to eat. The rest of his minimal requirement, we give him through a tube. This was pretty hard to get used to, but I’m getting there. I have to.
Ward 323.
There is, all things considered, not one negative thing to be said about the staff at the heart ward in Drottning Silvia’s Children’s Hospital. I have never before met with such professionalism, empathy and warmth. I suppose this is what they’ve been trained to do and get paid for, but I can’t help feeling that they really do care. They’re all well aware of the fact that a few hours prior to us stepping through the doors of room three, we were just happy new parents of a beautiful baby boy. Without a single suspicion of what would be lurking around the corner. They’ve let it all take time. Allowed us to let things sink in at a pace we can handle.
Everything around here goes along at a steady pace, all part of an ingenious plan. You find yourself lulled into a strange world of breast pumps, tube feeding and a meticulous weighing of nappies to check incoming and outgoing. Terms like saturation, VSD, CVC, EKG and pulmonalisatresi are becoming part of our daily life.
In a neat and orderly manner, meetings are booked – with surgeons, anaesthetists, therapists and physiotherapists. We’re given a guided tour of the ward and of the pediatric intensive care unit (PICU) and a thorough run through of the routines. All the time accompanied by ”Can you manage this now? Or ” We can leave it for later if you like, just let us know”. As soon as they’ve seen any signs of us not coping, being close to tears, someone has been there to take us to a quiet corner where we’ve been left to ourselves. To cope. To deal with the unthinkable.
All along the corridor walls are posters with photos, taken by parents, of babies and children more or less recently out of surgery. The posters, and a few photo albums, are used in an educational purpose to prepare us for what’s to come. ”Squint when you take your first look and then come back in a while for a second look” is the advice we’re given. An infant with a huge scar on his or her chest, the entire body covered in tubes and wires is not a pretty sight. Especially not when that infant is your own.
I’ve walked miles in these corridors by now, each time pausing a little longer by the posters, hoping thus to be prepared for seeing Abbe after his surgery.
Is that even possible?
Everything around here goes along at a steady pace, all part of an ingenious plan. You find yourself lulled into a strange world of breast pumps, tube feeding and a meticulous weighing of nappies to check incoming and outgoing. Terms like saturation, VSD, CVC, EKG and pulmonalisatresi are becoming part of our daily life.
In a neat and orderly manner, meetings are booked – with surgeons, anaesthetists, therapists and physiotherapists. We’re given a guided tour of the ward and of the pediatric intensive care unit (PICU) and a thorough run through of the routines. All the time accompanied by ”Can you manage this now? Or ” We can leave it for later if you like, just let us know”. As soon as they’ve seen any signs of us not coping, being close to tears, someone has been there to take us to a quiet corner where we’ve been left to ourselves. To cope. To deal with the unthinkable.
All along the corridor walls are posters with photos, taken by parents, of babies and children more or less recently out of surgery. The posters, and a few photo albums, are used in an educational purpose to prepare us for what’s to come. ”Squint when you take your first look and then come back in a while for a second look” is the advice we’re given. An infant with a huge scar on his or her chest, the entire body covered in tubes and wires is not a pretty sight. Especially not when that infant is your own.
I’ve walked miles in these corridors by now, each time pausing a little longer by the posters, hoping thus to be prepared for seeing Abbe after his surgery.
Is that even possible?
20 March 2005
And pictures.
This is how a healthy heart works. Oxygen deficient blood arrives in the right atrium, flows through to the chamber and is pumped out into the lung artery to the lungs, to be oxygenated. The oxygen rich blood then goes from the lungs to the left atrium of the heart to be pumped out into the body.
This is what Abbes heart condition looks like. The lung artery is blocked (pulmonalis atresi) so the oxygen deficient blood cannot get to the lungs to be oxygenated. Instead, the blood leaks out through a hole between the chambers (VSD) and out into the body. This is all theory. In real life you cannot live like this.
After his surgery, the oxygen deficient blood from Abbe’s body will leak from the left heart chamber to the right through the opening (VSD). There it will be mixed with the oxygenated blood from his lungs and pumped out into the aorta. A small GoreTex tube (shunt) will connect the aorta with the left lung artery, so that some of the blood will flow that way and into the lungs to be oxygenated. The rest of the blood goes on out into the body. That blood will be a mix between oxygen rich and oxygen deficient. They estimate that Abbe’s blood will be oxygenated to about 80%.
Andra bloggar om: pulmonalis atresi, VSD, hjärtat, GoreTex
Here’s how it works.
Right, I’ll try to explain Abbe’s heart condition as well as I can. Just bear with me.
The heart consists of two halves (each with a chamber and an atrium, but we’ll get back to that). One half pumps oxygen deficient blood into the lungs for the blood to fill up on oxygen. The blood then runs back into the heart and into the other half that pumps oxygen rich blood out into the body. That’s basically it, kind of like the figure eight (extremely simplified). Between the halves, no communication is meant to exist. That’s where Abbe has an opening, (VSD). Contrary to what you might think, this is a good thing for him, since he also has another problem. The artery that is meant to lead from the lungs to the heart has grown together (Pulmonalis Atresi), so there is no way for the oxygenated blood to get in that way.
But how can he be alive? Well, when you’re in your mother’s belly, you don’t use your lungs; you’re supplied with your mother’s oxygenated blood. The blood then follows a different route through your system. Kind of a shortcut. And because that shortcut exists, a small amount of oxygenated blood can escape and find its way through the little opening in Abbe’s heart to be pumped out into his body. Mixed with oxygen deficient blood, but still. The problem is that this shortcut – Ductus – closes a day or two after delivery. That’s when it is time to swap systems and start using your own lungs.
That’s what was beginning to happen to Abbe and that is why he got sick. If it had closed off completely, he would not have been able to oxygenate his blood at all. He would have died. Good thing they discovered it there and then. I think people are sent home from the delivery wards way too early. Seriously.
Abbe has been given a drip to keep the Ductus in an open position. That was the prostaglandinet they gave him in Borås, before he was sent off in the ambulance. But it’s not a permanent solution. As you might have guessed he’ll have to undergo surgery. I think the first operation will be as early as the start of next week. They’re going to insert a small tube to replace the Ductus and leave the blood free passage through the shortcut. Sort of like hot-wiring the heart. The blood will not be 100% oxygenated, but enough to for him live on. For now.
The heart consists of two halves (each with a chamber and an atrium, but we’ll get back to that). One half pumps oxygen deficient blood into the lungs for the blood to fill up on oxygen. The blood then runs back into the heart and into the other half that pumps oxygen rich blood out into the body. That’s basically it, kind of like the figure eight (extremely simplified). Between the halves, no communication is meant to exist. That’s where Abbe has an opening, (VSD). Contrary to what you might think, this is a good thing for him, since he also has another problem. The artery that is meant to lead from the lungs to the heart has grown together (Pulmonalis Atresi), so there is no way for the oxygenated blood to get in that way.
But how can he be alive? Well, when you’re in your mother’s belly, you don’t use your lungs; you’re supplied with your mother’s oxygenated blood. The blood then follows a different route through your system. Kind of a shortcut. And because that shortcut exists, a small amount of oxygenated blood can escape and find its way through the little opening in Abbe’s heart to be pumped out into his body. Mixed with oxygen deficient blood, but still. The problem is that this shortcut – Ductus – closes a day or two after delivery. That’s when it is time to swap systems and start using your own lungs.
That’s what was beginning to happen to Abbe and that is why he got sick. If it had closed off completely, he would not have been able to oxygenate his blood at all. He would have died. Good thing they discovered it there and then. I think people are sent home from the delivery wards way too early. Seriously.
Abbe has been given a drip to keep the Ductus in an open position. That was the prostaglandinet they gave him in Borås, before he was sent off in the ambulance. But it’s not a permanent solution. As you might have guessed he’ll have to undergo surgery. I think the first operation will be as early as the start of next week. They’re going to insert a small tube to replace the Ductus and leave the blood free passage through the shortcut. Sort of like hot-wiring the heart. The blood will not be 100% oxygenated, but enough to for him live on. For now.
19 March 2005
Forget NYC Marathon.
We have now spoken with one of the cardiac surgeons. He explained Abbes heart defect to us again, and slowly I begin to understand a little. It was, of course, very long since I learned in school how the heart works, and in all honesty, I don't remember much of it. But I have this feeling that now, I will be more or less an expert with time. In any case, he told us objectively and precisely what they'll do during the operation, what can go wrong and what we don't have to worry about. I realize that they have done this many times before and that they know what they are talking about. Very convincing and reassuring.
On the question of how Abbe will cope, we got the answer: "He will be able to live the same kind of life as you and I do. He should perhaps not bet on winning New York City Marathon, but Abbe will be no disabled child, if that is what you mean" A kind of light in the tunnel, that is.
He also told us that they have taken a special blood test from Abbe. Apparently the heart defect of the type Abbe has, is common amongst children with a certain cromosome dissorder. So they wanted to take a test to rule out the possibility that he has the dissorder.
But why would he?
On the question of how Abbe will cope, we got the answer: "He will be able to live the same kind of life as you and I do. He should perhaps not bet on winning New York City Marathon, but Abbe will be no disabled child, if that is what you mean" A kind of light in the tunnel, that is.
He also told us that they have taken a special blood test from Abbe. Apparently the heart defect of the type Abbe has, is common amongst children with a certain cromosome dissorder. So they wanted to take a test to rule out the possibility that he has the dissorder.
But why would he?
Odd birds.
Abbe lays in dep 323 - childrens cardiolgy unit - but we live in M&C unit. One is located in Queen Silvias Childhospital and the other in the Gynecology house. In other words, in two different buildings. So when we eat, we take the lift down to the underworld and roll off to nieghbour building to go up with another lift there. And then the same procedure back. A bit cumbersome, but it works.
However, it feels very strange when we are on the M&C. There they are. All the mothers and fathers – alternatively, mothers and grandmothers, depending on which country you come from – with their small babies in those translucent plasic boxes. Everyone but us. We eat breakfast, lunch and dinner at M&C with red tearful eyes, but with no baby.
I can tell that they're all wondering.
However, it feels very strange when we are on the M&C. There they are. All the mothers and fathers – alternatively, mothers and grandmothers, depending on which country you come from – with their small babies in those translucent plasic boxes. Everyone but us. We eat breakfast, lunch and dinner at M&C with red tearful eyes, but with no baby.
I can tell that they're all wondering.
Pulmonalis Atresia with VSD.
I didn't sleep many hours last night. They had squeezed in one of them extra bed for $40 from IKEA in the room intended for the mother and child. Nothing against those beds, but this one had been hosting a few thousand new fathers, so the foam rubber had long since lost its springyness. Well, whatever. It hadn't mattered if they gave me a brand new super bed. I hadn't slept anyway. Several hundred undergroud corridoor meters away, lay our little baby boy, connected to all kinds of technology to monitor that he remained alive. And here were we. "Try to sleep a little now, you need it," said the midwife. Well, thank you.
Last night, after what is felt like an eternity since that cardiologist had given us the implausible judgement, someone finally came and told us what they found during the examination. A cardiologist told us that Abbes heart was deformed and that his defect was called Pulmonalis Atresia with VSD. That is, the lung artery is blocked and there is a hole between the chambers. She showed a drawing how a normal heart looks and how it has become in Abbe. But I think they'll have to tell me all about it quite a few more times before it goes into my head.
I listened very carefully, but I heard nothing.
Last night, after what is felt like an eternity since that cardiologist had given us the implausible judgement, someone finally came and told us what they found during the examination. A cardiologist told us that Abbes heart was deformed and that his defect was called Pulmonalis Atresia with VSD. That is, the lung artery is blocked and there is a hole between the chambers. She showed a drawing how a normal heart looks and how it has become in Abbe. But I think they'll have to tell me all about it quite a few more times before it goes into my head.
I listened very carefully, but I heard nothing.
18 March 2005
Polaroids
I didn't bring a camera when we first came to the heart unit, but this kind nurse ran off to get a polaroid camera.
Tough news.
When we finally arrived at the hospital in Gothenburg, we looked up the mother & baby unit as the midwife in Borås told us to do. Now afterwards, I realise that perhaps it had not been so wise to take the car, in the state we were. The passenger seat folded to lying posstion for my wife to stand the pain, and myself with a focus on the road equivalent to a blood alcohol content of half a per cent on the alco meter. But it seemed such a hazzle to have the car left behind in Borås. We were just going for a quick check at the hospital i Gothenburg, weren't we?
Staff at Queen Silvias Hospital's M&C unit welcomed us with the head tilted to one side saying things like "Oh it is you, ooh, come here dear and we'll help see what we can do." We got a room and were offered some food.
Don't think we had much to eat at all, to be honest. We only wanted to see our child. "It's quite a distance to walk, I'm going to organize with a wheelchair," said a helpful midwife.
After a five minute safari in the underground corridors, we rolled in to the children's cardiac unit at Queen Silvia Children's Hospital. We were shown in to room three, the department's 24h guarded room, where three children's cardiologs (child heart specialists) was investigating Abbes heart, with an ultrasound machine. He was connected to so many wires and hoses that I hardly saw the small body behind all the equipment. They spoke a language that certainly was for the most part Swedish, yet was not possible to understand for us. But the focused tone of their conversation gave a hint of a moment of truth.
– Uh, we'll have to sit down in peace and quiet with you a little later and talk about your sons heart condition eh… you have understood that he has a congenital heart defect, haven't you? said one of cardiologes.
Smack! Just like that. Just what we didn't want to hear. The room was spinning and panic filled my body. "Erh...no," I managed to say. "Or, should I say yes, I think we're starting to realize it now," I stuttered. He couldn't of course know what information we had received or not before. We just stepped into the room. I don't blame him, not at all. To be honest, I don't know if there is would have been any other way to find out about it, that had been better. Frankly, I don't think there is a good way to learn that your newborn has a heart defect.
Staff at Queen Silvias Hospital's M&C unit welcomed us with the head tilted to one side saying things like "Oh it is you, ooh, come here dear and we'll help see what we can do." We got a room and were offered some food.
Don't think we had much to eat at all, to be honest. We only wanted to see our child. "It's quite a distance to walk, I'm going to organize with a wheelchair," said a helpful midwife.
After a five minute safari in the underground corridors, we rolled in to the children's cardiac unit at Queen Silvia Children's Hospital. We were shown in to room three, the department's 24h guarded room, where three children's cardiologs (child heart specialists) was investigating Abbes heart, with an ultrasound machine. He was connected to so many wires and hoses that I hardly saw the small body behind all the equipment. They spoke a language that certainly was for the most part Swedish, yet was not possible to understand for us. But the focused tone of their conversation gave a hint of a moment of truth.
– Uh, we'll have to sit down in peace and quiet with you a little later and talk about your sons heart condition eh… you have understood that he has a congenital heart defect, haven't you? said one of cardiologes.
Smack! Just like that. Just what we didn't want to hear. The room was spinning and panic filled my body. "Erh...no," I managed to say. "Or, should I say yes, I think we're starting to realize it now," I stuttered. He couldn't of course know what information we had received or not before. We just stepped into the room. I don't blame him, not at all. To be honest, I don't know if there is would have been any other way to find out about it, that had been better. Frankly, I don't think there is a good way to learn that your newborn has a heart defect.
The neonatal fog.
From the neonatal unit I honestly don't remember much. I cannot say how long we were there. Could have been four hours, but just as well thirty minutes. I tried to comfort but without understanding what happened, why we suddenly found ourselves in a chaos. They made a heap of tests. Lung X-ray, blood pressure and a whole series of blood tests, to rule out the possibility that the low oxygen saturation was caused by an infection. By this time Abbe got oxygen continuously. He also had a needle in one of his veins on his head where he received prostaglandin. It is possible that they explained why, but I cannot remember understanding any of it just then.
– We have excluded this and this (can not remember what they said) and now only remains to check the heart, so he has to go to Queen Silvia’s Children's Hospital in Gothenburg. There's already an ambulance ready and waiting for him downstairs, and "nurse so and so" will go with him, so you don't need to be worried.
- Eh ... all right, I stuttered and we saw the little bed roll out of the room surrounded by staff.
– We have excluded this and this (can not remember what they said) and now only remains to check the heart, so he has to go to Queen Silvia’s Children's Hospital in Gothenburg. There's already an ambulance ready and waiting for him downstairs, and "nurse so and so" will go with him, so you don't need to be worried.
- Eh ... all right, I stuttered and we saw the little bed roll out of the room surrounded by staff.
Control and chaos.
Finally it's time. It is our turn to step in to the paediatrician who had the honour to do the round at the mother & baby unit. She examines and pinches him, just as it should be. She looks and listens. But she kind of gets stuck a bit with the stethoscope on Abbes chest, looking thoughtful and concerned. She listens and moves it forward and back.
At the same time I can see the nurse who made the screening test, eager to hand over the envelope with its so far secret results to the doctor. "Hmm, I hear some murmur from the heart," said the doctor. "But it doesn't need to be anything to worry about," she hastened to add. The nurse with the envelope cannot stay longer, but hands over the information. Abbe had an oxygen saturation of 48% in his blood when the test was made. Normal is 100%.
"We have to ask the neonatal intensive care unit to examine him closer," said paediatrician. I – who did not understand the seriousness yet - thinking that they are probably going to tell us when the time comes. But suddenly I find myself half running after a nurse through the corridors of Borås hospital with my newborn son in my arms. A nurse is pushing my wife, who can barely stand because of the pain from the operation, in a wheelchair. Everything happens so incredibly fast.
At the same time I can see the nurse who made the screening test, eager to hand over the envelope with its so far secret results to the doctor. "Hmm, I hear some murmur from the heart," said the doctor. "But it doesn't need to be anything to worry about," she hastened to add. The nurse with the envelope cannot stay longer, but hands over the information. Abbe had an oxygen saturation of 48% in his blood when the test was made. Normal is 100%.
"We have to ask the neonatal intensive care unit to examine him closer," said paediatrician. I – who did not understand the seriousness yet - thinking that they are probably going to tell us when the time comes. But suddenly I find myself half running after a nurse through the corridors of Borås hospital with my newborn son in my arms. A nurse is pushing my wife, who can barely stand because of the pain from the operation, in a wheelchair. Everything happens so incredibly fast.
Something's wrong.
I hurry back to the room to not be late for the medical check-up 36 hours after birth. That's when they check if everything is as it should, in order to send people home as soon as possible. I know it sounds a little querulous, and a little cynical, but for me this has become an incredibly important symbol of that something is wrong with the savings in health care.
I dance in with a bouquet of flowers and look forward to proudly carry the little boy in to the doctor. My wife looks pale. She has been feeling very bad after the operation, but this is something else, that I notice directly. "There's something wrong with him," she said. "Noooo, why do you say that?", I replied in the belief that she felt so worn down after the birth that she couldn't cope more.
It turned out that in our region they were doing a screening test. They measure the oxygen content in the blood of small babies before the medical examination, to see whether that can detect hidden heart defects earlier. That's what a nurse had done just before I came back from my lunch. But she did not grasp the odd data. They were so low that she redid the test several times.
"Well, she probably must have done something wrong," I tried to calm, while my own concerns came creeping up on me.
I dance in with a bouquet of flowers and look forward to proudly carry the little boy in to the doctor. My wife looks pale. She has been feeling very bad after the operation, but this is something else, that I notice directly. "There's something wrong with him," she said. "Noooo, why do you say that?", I replied in the belief that she felt so worn down after the birth that she couldn't cope more.
It turned out that in our region they were doing a screening test. They measure the oxygen content in the blood of small babies before the medical examination, to see whether that can detect hidden heart defects earlier. That's what a nurse had done just before I came back from my lunch. But she did not grasp the odd data. They were so low that she redid the test several times.
"Well, she probably must have done something wrong," I tried to calm, while my own concerns came creeping up on me.
What you see is what you get?
Tired and happy after a couple of long but enchanted days, I looked at my wife and our new family member. He’s sleeping, and she appears to need that too. Now it was about thirty-five hours ago that I heard that precious baby cry, behind the green curtain. "I'll pop out and grab something to eat" I said. Apart from the bed to sleep in, us fathers get breakfast, but not lunch. BB [in Swedish short for mother & baby unit] – Bed and Breakfast, I thought to my self with a smile. I ran down and bought flowers and some sweets in the kiosk outside. A sloppy burger in the hospital's newly built cafeteria goes down as gourmet food, and I took the opportunity to call work and tell them about the miracle. "Did all go well?" a colleague asked. "Sure. The mother is okay under the circumstances and the baby is so cute. Ten fingers, ten toes," I chirp cheerfully.
Happily ignorant.
Happily ignorant.
Born in Borås
Just about two days ago we had rolled in to the operating theatre to deliver Abbe by caesarean. Since his big brother came to the world after a really hard marathon delivery - which also ended with caesarean - the doctors had promised to cancel the attempts early if it didn't start by itself this time. Said and done, my wife struggled for a few hours, but when nothing seemed to help, we ended up in the operating theatre. Lots of people in the room, green clothes and hairnets (despite my two millimeters long hair do), baby scream, "it's a boy" and the mandatory cutting of the umbilical cord. Perhaps even more symbolic with a caesarean than normal childbirth, but still.
Actually, there is a big advantage with caesarean, at least for us fathers. We get that first trembling hour with the baby, just to ourselves. The mother is being sewn up and sorted out. I mean, she has just gone through a fairly large surgery.
So there I sat. Proud as a rooster with a tray of sandwiches, tea, juice, Swedish flag and a compilation CD they apparently give to new parents. On the tray was also a small sign with facts and figures. Born: March 16 at 11.18 pm. Weight: 3900 grams. Length: 50.5 cm.
Filled with that total happiness that only newborn children can give you, I was looking in awe at my little baby boy. He's so fine.
But. He seems a little tired.
Actually, there is a big advantage with caesarean, at least for us fathers. We get that first trembling hour with the baby, just to ourselves. The mother is being sewn up and sorted out. I mean, she has just gone through a fairly large surgery.
So there I sat. Proud as a rooster with a tray of sandwiches, tea, juice, Swedish flag and a compilation CD they apparently give to new parents. On the tray was also a small sign with facts and figures. Born: March 16 at 11.18 pm. Weight: 3900 grams. Length: 50.5 cm.
Filled with that total happiness that only newborn children can give you, I was looking in awe at my little baby boy. He's so fine.
But. He seems a little tired.
From the beginning.
We sat quiet in the car from Borås to Gothenburg, my wife and I. After days of rain, the sun was shining and dazzled me a little, as I drove. None of us dared to say anything. The silence was loud. All thoughts fought for space in my head. "Is it something serious? Perhaps it is just something he'll grow out of. No, I know, it is probably just a routine check. But, why did he leave in an ambulance? Why couldn't they even wait for us? Is he alive?" It was all spinning. I don’t know if I was in shock. No, this was some sort of vacuum before the shock. A vacuum.
-- He looks a little like an Abbe, I said.
-- Mmm, perhaps we should call him that? It's quite nice.
-- Mmm. Shall we name him Abbe then?
-- Yes.
We had talked about the name at some point earlier, mostly for fun. But it was a while ago now, and we had dismissed it as a nickname for Albert. But we didn't want Albert. Then Alfred is better. But then of course, the nick will be Affe. Other names had therefore become main favourites. Abbe would have to remain the cool character with green hair in that Swedish kids program on the telly, and not the name of our newborn child, our second son. But there in the car, in the vacuum, it suddenly felt just right. Abbe will do, it suits him.
It was like a kind of emergency baptism. We didn't say it just then, and actually never after that either. But I am sure we had the same thoughts. He must have a name.
Just in case.
-- He looks a little like an Abbe, I said.
-- Mmm, perhaps we should call him that? It's quite nice.
-- Mmm. Shall we name him Abbe then?
-- Yes.
We had talked about the name at some point earlier, mostly for fun. But it was a while ago now, and we had dismissed it as a nickname for Albert. But we didn't want Albert. Then Alfred is better. But then of course, the nick will be Affe. Other names had therefore become main favourites. Abbe would have to remain the cool character with green hair in that Swedish kids program on the telly, and not the name of our newborn child, our second son. But there in the car, in the vacuum, it suddenly felt just right. Abbe will do, it suits him.
It was like a kind of emergency baptism. We didn't say it just then, and actually never after that either. But I am sure we had the same thoughts. He must have a name.
Just in case.
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