Michaels homepage for premature born children with a birthweight of up to 1000 gramme

- Michael's story -

Prologue

Please allow me to introduce myself. My name is Seraphim VII. , my job is being Michael's guardian angel. Usually we're starting our work shortly before the birth is expected, in the 38. week of gestation. When I got the order for Michael in week 28, I feared the worst. Michael's mum didn't look pregnant at all and she had lost 7 kilograms since the beginning of the pregnancy (she always felt sick). Her gynaecologist told Anke all she needed was some extra-calories. She also had back-aches during this time – if you ask me: kidney problems. There was more than enough protein in the urine – a clear sign for high danger - except for her gynaecologist. And all this trouble because Anke's guardian angel had his vacation...

On January 23rd 1996 – the 30. week of gestation - the vacation of Anke's guardian angel ended. And after this guy had nearly made a mess out of literally everything, his only idea was to make her a very bad headache. The following day, the pain lasted on, and after Michael's father did return from work, in was already . So the parents to be had to go to hospital. The hospital doctor did a special ultra-sound examination. As being an expert, he realised immediately that Michael had a bad time. Foolishly enough, Michael's parents had given the ”Mutterpaß” to the gynaecologist –she wanted to write down the results of the last examination. (Mutterpaß is a legally prescribed document over here that lists all details about the current pregnancy and the current health condition of the mother- to-be. Pregnant women are strongly advised to carry this document with them in order to guarantee quick help for mother and child in case of an emergency.)
Because of this missing document, the hospital couldn't give a clear diagnosis. Michael's mum had to stay in hospital over night. They gave her a cortison injection for lung-development. – you need four to get the full result, but there wasn't enough time - and they connected her to a CTG -monitor all night. On the next morning, Michael's dad got the ”Mutterpaß” from her gynaecologist. The hospital doctors took a short look on the last results and Anke was immediately moved to the next hospital with a NICU (neo-natal intensive care unit). They made a new ultra-sound examination over there and discovered that the placenta was already insufficient to nourish a baby. Seeing this, the doctors made up their minds towards an immediate caesarean section at once. Diagnosis: Heavy pre-eclampsia. Well done! At this time, Michael's dad knew nothing about it. He had delivered the "Mutterpaß" to the "old" hospital in the morning and went away to get some extra holidays from his boss. A short phone call convinced him that it would be better to make an immediate visit to the "big" hospital...

The birth – or better: the "delivery"

So it happened that my protege was delivered through caesarean section in presence of both parents. It was January 25th, 1996 at 4.35 p.m. Michael had the gigantic weight of 570 grams and a length of 30 cm. He would have fitted perfectly on a piece of legal paper. As I had already known, the poor little mite had hungered during the last time in his mom's womb. They allowed him a little squeak and then did put him immediately under artificial respiration. It was the smallest tube they had. Wasn't this made to the measure by me? After this ”intubation” he was brought full speed with a transport-incubator to the NICU. Michael's father was allowed to follow him later, he was shown the little boy and told that Michael had a one third of a chance to survive mentally and physically intact. Another third would be for brain-damage. And the last third would be death during the first week. At parting they made a polaroid (left), intended as a memory. Hey, the doctors didn't know ME! Anke had to stay the whole night in the labour room. The doctors expected acute kidney-collapse every minute. Thank heaven that her guardian angel had had enough relaxation in his vacation to keep the kidneys in function.

First days on earth

During the first days, Michael was resting motionless in his incubator. The gravitation on earth is quite brutal. Nevertheless he was – like all new-born babies - losing about 40 gramme of weight. I had plenty of work to stop him giving up. He wasn't very beautyful at this time: His face looked like that of a very old man, his belly was thick, arms and legs like sticks, hands and feed so small. His eyes were, like that of puppies, closed – as if he didn't want to see this cruel world. His dad visited him every day to take a look at him and to speak with the doctors. Michael had the usual new-born jaundice, for which he got blue light therapy.

The pleasures of being a mother...

It took some days before Michael's mum was able to meet him. On January 26th it had snowed a lot. The women's clinic and the NICU were different buildings, and it would have been impossible to roll a wheel-chair between this buildings. Anke's doctors thought it also was too dangerous for her health. Her blood-pressure was still too high and she had to take medicine to lower it. Anke used a machine to keep the breast-milk flowing. After doing so for half a year, it was clear that Michael could because of her medicaments never drink Anke's milk.

First progress

During that time the doctors were worried about Michael not having digested. They feared an ileus and were prepared for an emergency operation. Incidentally I heard about this when the doctors explained this to Michael's parents. Michael and I worked the whole night through and he could make them the present of a nicely filled napkin. Has everyone ever been so happy about THAT??

High-tech baby

Michael got an awful lot of medicine and still was under artificial respiration. Electrodes connected him with a colourful , posh monitor, which could show in five different ways (vision and sound), that Michael had a bad time. They often took blood from him (for examinations); because of anaemia he got fresh blood again and again. A feeding tube and some infusions nourished him. The artificial respiration prevented him from eating the regular baby stuff. What worried me and his parents most were the many alarms – it really sounded like in a gambling house. Nobody came to explain all this equipment – we always feared the worst when the noise started. By now I know that most alarms were false alarms, but this bleeps made me extremely nervy.

How to breathe : Attempt No. 1 – 3

On March 2nd, 1996 the one kilo mark was reached. Eleven days of free breathing for the first time – just as an attempt. I could have told you before that it wouldn't work. A few days later Michael's colour changed into a light blue and artificial respiration had to start again. On March 22nd the next attempt was made, but this was also a short interruption of artificial respiration. The doctors didn't give up: on March 29th the third attempt followed. This lasted for two weeks; Michael even tried bottle-feeding in this time. On April 14th, Michael had a bad day and started artificial respiration again. This long-time artificial respiration had it's side-effects, BPD (Bronchia pulmonary dysplasia) troubled his lung. As a little consolation (I hope Michael was of the same opinion) his time in the incubator came to an end. On April 15th Michael went in a comfortable warming bed. Michael liked it, and his parents, who visited him every day, were glad about it: The little guy was much more reachable now. It was a lot easier to take him in one's arms, or "kangaroo".
Unfortunately I got ill at this time, and promptly Michael developed in an unobserved moment a both-sided hernia. The doctors made up their minds that the openings were so big that there wasn't any danger of his bowels being jammed in. An operation could wait, until there was "more child".

How to breathe: Attempt No. 4
Hernia has gone!

On Mai 25th, 1996 my 48 cm protege went to self-breathing one more time. Two days later he had something like a convulsion of the lungs and had to be intubated again. Seeing the opportunity (Michael had to be intubated for surgery anyway) the operation took place on May 31st. A virtuoso of the scalpel did this work, the scars are hardly to find today.

How to breathe: Attempt No. 5

On June 10th, artificial respiration was removed again (doctors are very stubborn) and they stuck an oxygen –tube on Michael's pretty little nose. Three days later he moved from his warming bed to a normal child bed. Due to the big success, his Mum got the allowance to look after him even outside of the official visiting hours. As I'm always been saying: There's nothing more important for preemies than the feeling of being loved. On July 9th there was was Michael's great day: he was allowed to leave the NICU and moved to the preemie station. The next day saw him movin again; this time towards the "regular" children station. There he got into a three-bed-room. But such a contact to other children was too much for him: On the night to the 12th of July, Michael got in trouble again and artificial respiration had to restart one more time (against furious protest of Michael). However, he had reached what he wanted to reach: he was back in the NICU and could see his pals again.

How to breathe: Attempt No. 6

Six days later, the internal tubes were removed again and replaced by an external oxygen tube. In the meantime, there was not much left of the little gnome we had seen in January (see picture). Only the little scar (nurse's accident with a pair of scissors) is a little blemish. On July 29th, Michael got a nice furnished bachelors' room in the children's station, but which he had to share with his mother (rooming-in) . Unfortunately, the doctors found out on August 7th that a part of the lung had sunken in, this area was glued and the boy had to repositioned every hour. Michael hated these shiftings; the only thing he allowed was the supine position - everything else was new-fangled tittle-tattle. On August 19th he had enough of this action and wanted to go back to his beloved NICU. Artificial respiration began again.

How to breathe: Attempt No. 7

The NICU soon went boring to Michael, and in September he and his mum (and me, of course!) moved again to his bachelors' room. The internal tube was changed against an external oxygen tube and Michael said good-bye to the NICU. His first outing in a pram with a mobile oxygen-bottle, parents and nurse on September 7th didn't suit Michael at all. This massive attack of real light, that bad sun and fresh air led to the result that he closed his eyes until being back in his room.

How to breathe: Attempt No. 8

On October 9th, Michael lost breath again: back to the NICU and back to artificial respiration. The doctors found an enlarged right heart ventricle, a side-effect of the additional stress caused by his BPD troubled lung. Meanwhile I had convinced Michael that this to and fro couldn't go on any longer. In the night to the October 13th, Michael removed his artificial respiration tube personally out of his lung and since then didn't need it anymore. Internal tube changed against an external oxygen tube. We waited for the next change of rooms.

Regular station again

On October 16th, Michael, his mum, me, bag and baggage moved again to the children station. After all his escapades the doctors didn't have much faith in him being healthy enough. It needed some time until Michael convinced them that he wouldn't make nonsense anymore. In November 1996, the hospital ordered a lot of equipment that would be necessary for Michael at home (!). In the meantime, Michael's mum was taught everything she could need to be able to look after a high-tech-baby. The hardest part wasn't the technical details but daily contact with nurses. Some of the head nurses felt in absence of the doctors like "station-queen” and even criticised actions that had been recommended by other nurses or doctors. It was sometimes hard for Michael's parents to keep their mouths shut, but for Michael's sake, the went through it.

Going home

The medical check-ups needed a lot of time. Finally, on December 16th, 1996 there was a tearful good-bye to the hospital and we could celebrate his departure. Michael didn't notice much of this historical moment - he fell asleep. Since this time, there had never been a critical moment anymore. My story ends here. I had a fulltime job for a lot of months, and I really need a vacation now. A colleague will take over, but he's a bad writer so I leave the further story to Michael's parents. Bye, bye Seraphim VII.

Home at last

When Michael went home at last, we were unbelievably happy, but we were also afraid of if everything would work out well. The first weeks we got good support from a children's nurse working for the Caritas (social department of the catholic church over here) - we owe her a lot. In the beginning, the nurse came daily to lay new feeding-tubes for Michael, change plasters, try to teach him eating (without success) and to weigh him. It took some time untile we learned to do all of these things by ourselves, but then her visits were first reduced and then ended after two months.

Physiotherapy

Physiotherapy (the Bobath method) had already started in hospital when he was only a little something, and continued at home. Michael gets two lessons per week; the success was easy to see:
Condition at leaving hospital:
Michael only accepts the supine position, which he was used to know since his birth.
Condition at home:
On February 5th, 1997 Michael begins to turn by his free will in prone position. On June 4th, Michael sits by himself. On July 7th, we are astonished to see him getting on all fours and start to crawl (until then he used to spin himself around) to the balcony-door. During this period, Michael tries to get up on his two legs, until in the mid of august he succeeds. One year after his departure out of hospital he's climbing up stairs like a pro ... what will happen next? To be continued...

Children's diseases

Strange enough, Michael's list of diseases is extremely short. Since he's been at home, there were no critical moments.
At the first time, his paediatrician, his otologist and the clinic had different opinions about a tymponic cavity effusion: One ear, both ears or no ears affected? We as his parents refused a hastened surgery and this proved to be right: The effusion had disappeared in the mid of 1997. He had some minor colds and a middle ear inflammation once a year. Despite of slightly squinting eyes, Michael refuses to wear his glasses. We have to plaster one eye every day now for two hours.
Teeth are arriving since February 1997 in regular intervals; there are very few missing now.

His lung – that wondrous one

Michael's lung healed at such a speed that left us completely astonished. When he was "released” out of hospital, doctors told us that he could breathe without extra-oxygen not until at least half a year or at most one and half year had passed. Well, in the night to May 31st, 1997 we dared, encouraged by permanent good results (we had an aperture which could find out the amount of oxygen in the blood simply by fixing something on his foot) we dared to switch off oxygen over night. This success encouraged us again on June 17th to switch off the oxygen-machine for ever. We made some spot-tests in the first time, but everything was perfect. Without this additional tubes for oxygen in his face, Michael looked much better! Nevertheless, we used to carry an oxygen-bottle with us for some time, replaced it by a manual device for reanimation, and finally dared to leave without all of these devices. An emergency or dangerous situation never occured. A check-up of his heart in December 1997 showed everything O.K. So we decided after consultation with his paediatrician to ship back all of his high tech stuff.

Other's reactions

Since Michael is at home with us, we had some fun to watch the reactions of other people when they notice Michael's equipment. Especially when he was still wearing his oxygen-tube there were extremely different reaction to notice. An oxygen-tube fixed with a lot of plaster in a little face looks much more dangerous than it is. It made it easy to recognize this child as an extremely ill one even from a distance. The reaction changed with the age of the observers.
Children
Children up to approx. 6 years of age had no difficulties with Michael's appearance. Most children came to Michael and asked: "Hurts?". Have you ever tried to explain an oxygen tube to little children? Especially little girls showed a great interest. Children older than six years were mostly too shy to ask.
Younger people
Younger up to middle-aged people mostly started looking without much interest at Michael, got startled and dared a second look in the buggy. One could see how the grey cells started to work: what is that in the fade – something with danger of infection? Thank heaven MY children haven't got this.
Older people
Some people older than sixty dared to asked questions again. Perhaps because people of this age get often in contact with medical high-tech these people are difficult to shock with this equipment.
These reactions are history by now. Since Michael is only wearing his feeding tube he is not so easy recognizable as an ill child. Only a few people take a second peek into his buggy. Oddly enough, less children come to Michael now.

Michael - in a hurry...

Hot summer of 1997 had some good effects on Michael: Up to this time that scoundrel was totally against eating or drinking; the only exception were a few sips of warm bathing water (!). Temperature reaching 30 degrees Celsius left him no other chance than taking some additional liquid. His favourite was warm tap water, but in serious situations he even drunk cold mineral water. He looked like biting in a citron, but gulped it down. Even liquid nourishment was accepted (soup) but, sadly enough, he didn't realize the sense of this and stopped after a few sips...

Running or eating - whatever comes first

In the autumn of 1997, Michael worked continuously to reduce his deficits. He learned to pull himself up on everything that was close enough to grip – be it chairs, tables, sofas or people. In December he still couldn't run, but he climbed madly. Once we'd let him free in a shopping-mall (he was protesting against sitting in his buggy) – he conquered the stairs and reached the second floor before we knew what happened. On December 7th, we visited cologne and went into a restaurant. We ordered really good, thick tomato-soup only for him (his first order in a restaurant). Michael didn't allow us to try a spoon, he drank from the cup – nearly a third of it, which was really a good job. December 13th was not a black day for him, despite of the date. It was the date when Michael stood the first time without help. It was in the evening, he was getting tired. Without thinking, he raised perfectly up and stood there –about 1 or 2 seconds, alone. When he noticed it, he got safely down again on his behind – and started to cry! It's hard to understand these children...

May 1998 - Michael runs!

In March/April 1998, Micha found out that someone runs very comfortably on an adult's finger. From that moment on, nobody could pass him without having somebody firmly grabbing one's finger. Can be very nagging...
At the end of April, 1998 his physiotherapist recommended us not to lend him our fingers anymore. And what did she say: two or three days later, around May 1st, Michael started to run without any help. Right from the start, Michael ran so secure that he didn't fell a single time.
Regarding to his eating disorder, nothing has changed over the last couple of months. This hard-headed little boy constantly refuses eating by himself. The weird thing is that at his age, beautiful little children like him get free sweets literally everywhere. A sweet at the grocery store, a little slice of sausage at the butcher's, and a banana from the greengrocer. We can't go on like this forever. So we as his parents spoke to his doctor and decided to try a so-called ergo-therapy (don't know if it's called the same in english). We chose a therapist that stated he had experiences with eating disorders, and from the beginning of May 1998, Michael gets ergotherapy once a week. We hope this will do it.