Latest update: 23-04-04
It has been quite some night! Mirjam had labor pains the whole of Sunday. She could not believe that this could be it. Because the pains kept coming back at 10/15 minute intervals, we went to the hospital at about 7 in the evening.
The doctor also thought that it wasn't very serious yet, but 15 minutes after he said that, Mirjam's water broke. Mirjam started pushing at half past 10 and at 22.52 Tibbe was born.
A setback was that Tibbe's omphalocele was ruptured. He was stabilized in the room next to the delivery room and brought to the Intensive Care Unit. Before that he was shown to us in his incubator. Now he had to wait for his surgery (reconstructing the membrane of the omphalocele).
The next problem was that the placenta would not let go out of the womb. Eventually Mirjam had to undergo surgery (before Tibbe even). Mirjam lost a lot of blood in the process, but eventually the doctors succeeded. At about half past 4 she was stable again and conscious.
Tibbe's operation was also successful. They told us this result at about 6.
After a small hour of sleep (and a lot of phonecalls to the new grandparents) we have rolled Mirjam in her bed to Tibbe on the ICU. First visits by Granpa Jan and Grandma Ella at 11. Grandpa Danny and Grandma Wil have also arrived in Rotterdam; it's their turn in the afternoon.
Anne and Griet have also driven from Friesland with Timon and Ferjo. Not a moment's rest, but all in all it's a lot of fun.
Take a look at the pictures!
Tibbe and Mirjam have had a good night. Tibbe's bandaging has been removed and the doctors were very satisfied with how the repaired omphalocele looked. Furthermore they have put him in another position (more to his side) because the omphalocele was pinching of his manhood. Tibbe is quite sedated by the dormicum and the morphine but does respond when you tickle his feet..
Mirjam is now able to go to the bathroom by herself and that's good. All tubes have been removed from her. She can also go an see Tibbe in a wheelchair now. So we don't need a nurse anymore to push the bed to another ward. It's great that Mirjam can now see Tibbe as often as she wants.
Just now registered Tibbe at city hall. And ordered the final version of the 'birth-cards'. This afternoon Carel and Marleen will come and visit, together with Tibbe's little nieces, Emke and Nienke. They bring Tibbe an enormous amount of presents, under which a great delivery tricycle and a magnificent picture of Emke and Nienke with a little story for in his incubator, because the girls cannot come to the ICU to give Tibbe a kiss.
Tibbe is doing absolutely great. He is now of the dormicum and the morphine. The doctors will check how he responds before they decide what other pain medication they will give him. Tibbe is extremely relaxed in his little glass house.
Mirjam pushed it a little to far yesterday and does feel a little bit weak today. She has to rest more.
Grandma Ella, Marije and Eveline visited in the morning, Janneke in the evening.
The birthcards have arrived. Friendly neighbours have collected them from the mailman. Mailed the cards today already.
Before daddy is going home, he drops by with Tibbe to wish him a goodnight. Tibbe was not feeling very well and he vomited a little. He gets clean sheets.
But afterwards, Tibbe opens his eyes for the very first time!!! He is wide awake and looks around curiously. Daddy is talking a lot to him and Tibbe tries to focus his eyes in the direction of the sound. When he hears a little beep from his little girl in the bed next to him, he immediately shifts his eyes in that direction. Daddy is staying a bit longer to enjoy the new development as long as possible. Afterwards he brings mummy Mirjam the good news.
Tibbe is out of his incubator!!! (11.00 hrs)
Tibbe is of the ventilator!!! (18.00 hrs)
We could hold Tibbe for over an hour!!! (20.00 hrs)
This is what we call a good day!
See for yourself and look at the pictures!
Tibbe is keeping up the good work. Because he had a good night without the ventilator, he is moved to the medium/high care unit (he was on the high/intensive care unit). He keeps trying to pull out the little tube that breezes some extra oxygen into his nose.
Furthermore he can eat some mother's milk for the first time today through his NG tube. Very little now, but the volume is to be raised slowly every day. He seems to tolerate it pretty well and did not throw up or anything.
Mirjam is doing fine too. She's doing allright extracting breastmilk and the production is now going to be used too. Furthermore Mirjam can decide for herself if she wants to stay in the hospital till Monday or leave on Saturday already. This is because of the large amount of blood she lost after the delivery. For the time being we decide to leave the hospital on Sunday.
And of course there's lot of pictures again
Tibbe was again making great progress today. Because he likes mama's milk zo much and does not have to throw up or anything, he gets more and more of it, up until about half of his total feeding (the rest is given directly in his blood trough a 'central line'. Furthermore the arterial line is removed. With it, they could easily draw blood from Tibbe and check his blood pressure. Because all of the values are good all the time, it's no longer necessary. Of course Tibbe is still trying to pull out the little tube that breezes some extra oxygen into his nose.
Mama Mirjam is also doing great. She walked all the way to Tibbe today. She got a little tired doing that, but she did it. It is now definitive: she's going home tomorrow (Sunday).
And of course there are new pictures
Day 7 (Sunday June 29th)
Mummy's going home. (where she types this text on Monday). Everybody warned me that it would be very difficult to go home. I didn't want to believe that, because I knew that already (for about half a year) that I would have to leave my baby in the hospital? I was wrong, it was really very difficult and I'm still seriously upset. The beautiful welcome home flowers that our friends brought us, help a great deal!
Grandma Ella has tidied up the house for us and subsequently we have had dinner with the whole Dekker family and drank a lovely glass of champagne to celebrate Tibbe's birth! For me, half a glass was enough... Uncle John has also seen his little cousin now. Tibbe's neighbour (another baby boy) has an Ajax-shirt hanging on his bed with his name on it. John can hardly wait till the shops (one in particular) open...
Furthermore Tibbe is no longer fed through his central line, he only gets some fluids. They also stopped the antibiotics.
Day 8 (Monday June 30th)
It's almost biblical: after 7 good days, this one is not so good.
At our arrival in the hospital, they were just bringing Tibbe to the X-ray department. Mummy can go with him. Tibbe is breeding very fast: a normal baby breathes about 30 to 60 times a minute, Tibbe was above a 100 times for the most part of the last day. The doctors are worried that he might have some fluid in his lungs. After the X-ray and also an ultrasound of his kidneys and bladder we return to the ICU. There, one doctor tells us that Tibbe has a small hole in his heart. It is a bit sad that they knew that right after he was born and that they didn't bother to tell us, but that is of minor importance. The whole in his heart could have been the cause for fluid in his lungs, but that is apparently not the case. Furthermore the blood tests that are done every day show that Tibbe has some sort of infection. This means new antibiotics and more blood tests.
It is now a pity that the arterial line is gone, because now they have to pester Tibbe for every blood sample. It looks like the infection is caused by Tibbe's 'central line'. Therefore they remove it. Now we'll just have to wait for the lab results and how our little fellow responds to the medication.
Among all this bad news, there's also some good news, but it's hard to still see it. The kidneys are just perfect and the bladder is too. Tibbe is eating more and more through his NG tube and is gaining some weight. His omphalocele is unwrapped by the doctor again and it looks great (so it cannot be the cause of the infection.
We thought that it would be better to go to the hospital only twice a day. We have to find a balance between wanting to see Tibbe all day and getting some rest for ourselves. That is probably why we sometimes do not answer the phone.
At home we get loads of postcards, flowers and gifts. It is great that everybody is sympathizing with us even more now.
Even more pictures
Day 9 (Tuesday July 1st)
When we arrive at Tibbe in the morning things are quiet. They just gave him a wash up, too bad, we would have liked to do that. Tibbe is still breathing to quickly. The doctors are busy excluding each and every possible cause. Main suspect it the infection that Tibbe has. They give hime antibiotics for that and they removed his central line yesterday. But there are still some more possible causes for this rapid breathing. It's not his heart, it's not fluid in his lungs, but they keep looking.
We're both seriously worried and we have a longer talk with the doctor who sketches a more complete picture. She tells elaborately what are the possible causes for Tibbes rapid breathing (tachypnea) and what it is they are looking for. Furthermore we have an appointment with the surgeon tomorrow who will inform us even further.
Tibbe is lying quietly on Daddy and Mummy's lap and is breathing very well (and to quickly). It looks like he breathes more quickly when he's sleeping quietly, which seems sort of illogical.
All in all Tibbe is doing relatively well. He eats as much as normal babies his age and takes it in well. Besides the antibiotics for the infection, he does not get any other medication. And he's peeing and pooping with the best of them. And his 'repaired' omphalocele is looking perfect.
Furthermore, he is extremly cute of course, but you can all see that for yourself on the picture pages (little additions today, only the nice gift from Mirjam's colleagues.
Day 10 (Wednesday July 2nd)
Arriving at Tibbe's bed in the morning, he is wide awake and much more active than yesterday. He seems to breath a bit more quietly. The first messages from the nursing staff indicate that the worst is behind us with the infection.
In the afternoon we have an extensive talk with the surgeon. He goes through all of Tibbe's 'systems' with us. The omphalocele (bowel system) is doing well. Everything works and the cele is not infected. The lungs (respiratory system) function well and Tibbe's rapid breathing is not caused by his lungs. Also functioning well are the kidneys and bladder. The same goes for the heart, despite the small hole in it (VSD). The VSD could heal spontaneously. When this does not happen and it would cause problems, a relatively simple procedure would tackle these problems.
Afterwards we have Tibbe on our lap and it seems that the good start this morning does not prevail. He is breathing rapidly to often. But all the test results seem to indicate recovery.
We drop by Tibbe in the evening. We let him sleep as much as possible so that he can recover more quickly.
Day 11 (Thursday July 3rd)
Very little news. Tibbe is however quite active the whole day, often with his eyes open. And he's of course very active breathing rapidly. In the evening they've come up with another possible solution for the rapid breathing: They want him to lie on his belly. For that they bring in a 'big-boy bed'. With pillows they make it suitable for Tibbe to lie on his belly and still support the omphalocele. With a little measuring and fitting, they succeed and Tibbe is actually quite comfortable. But soon it is clear that is does not reduce his rapid breathing.
Day 12 (Friday July 4th)
The next morning they have stopped trying to lie Tibbe on his belly. Because he seems to breathe more quietly on our laps, they now try a hammock. It's one just like mummy's, but a little smaller.
But this does not seem to do the trick either. In the afternoon Grandpa Danny and Grandma Wil come to visit again. They see Tibbe with his eyes open (and out of the incubator) for the first time, so it's quite special.
Day 13 (Saturday July 5th)
Tibbe's great-grandmother (one of four great-grandparents in total) comes to visit! Together with Jos and Corrie. Tibbe is doing allright. Everything is going great, besides his rapid breathing. Tibbe gets his feeds (through the NG tube) in 'plunges' now, instead of 'drips'.
Day 14 (Sunday July 6th)
Uncle Henk and Auntie Waheeda (and cousin Jaden) come to visit. Tibbe gets yet another present, a Miffy playhouse. On today's pictures, you can see that Mummy and Daddy get more experienced taking care of Tibbe. In the evening Mirjam tries to breastfeed Tibbe for the first time. It isn't very successful but very comfortable for Tibbe and Mirjam.
To the pictures
Day 15 (Monday July 7th)
Today yet another attempt at letting Tibbe breathe less rapidly. They hang the omphalocele, in order to release some pressure from his belly. It doesn't seem to work. Ilja and Kees came to visit.
Day 16 (Tuesday July 8th)
Tibbe has drunk for the first time! From a bottle, given by mummy. Daddy went back to work for the first time, so he was not present for this scoop.
Day 17 (Wednesday July 9th)
Tibbe has an infection again. The doctor was on the answering machine this morning, and told that Tibbe had a fever. Mummy went straight to hospital. Daddy went too later on, from work in Delft. They've done all possible tests again and now we have to wait for results. Furthermore Tibbe gets antibiotics again and also has another drip. In the evening Marlies comes to visit with very nice presents, but Tibbe sleeps tight.
Day 18 (Thursday July 10th)
Today was not a very good day. Tibbe is much bothered by his infection and his rapid and shallow breathing. That leads, among other things, to respiratory distress, especially when he is crying. Subsequently, his lack of oxygen is increasing and the distress becomes even greater. This happens quite a few times today. With a lot of holding and comforting him, we can keep him reasonably calm, even if they take blood from him. But eventually this is no longer sufficient.
Tibbe needs to go back on the ventilator. At first they try a tube that does not enter his trachea completely, but that does not work sufficiently. So Tibbe gets a 'full tube' agian. At first they administer a flow of pure oxygen to have him regain his saturation level. By now he also has morphine and dormicum again together with some medicine to ease his muscles. So he is completely dazed again.
But it's all in Tibbe's best interest. He can now use his energy solely to fight his infection and is completely ventilated.
Day 19 (Friday July 11th)
Today Tibbe gets a whole lot of tubes that come together with him being on the ventilator again. He cannot be fed through a NG tube so he has to have a tube that goes even further, into his intestine. Besides that he gets another NG tube (through the same nostril), just to release air from his stomach. Putting all these tubes in does stress him quite substantially. But luckily he does not experience as much of the respiratory distress as he did yesterday. In the evening they put in a new arterial line. With it, they can take blood from him more easily, without having to stick him with a needle every time. This is also necessitated by the ventilation. By now Tibbe has about as much tubes and threads as he had three weeks ago.
Eventually Tibbe is sleeping in his bed relatively content. Old-uncle Jan came to visit today and brought yet another present, also from Felice and little Arthur. Earlier today we did put the 'Paris gifts' at Tibbe's bed.
At the end of the afternoon we have a quiet talk with the paediatrician. She explains how they try to fight Tibbe's infection and respiratory problems. A somewhat less pleasant message from her is that Tibbe will probably be ventilator-dependent for quite some time.
Day 20 (Saturday July 12th)
Tibbe has vomited a lot today, but does sleep relatively quiet. There is however a lot of mucus in Tibbe's lungs. It is being sucked out regularly. On the basis of some X-rays they adjust the position of the tubes in his stomach and intestine. This seems to tackle the vomiting problem.
Day 21 (Sunday July 13th)
Mummy and Daddy have been quite stressed out by the events of the past few days. Today the paediatric surgeon unwraps the omphalocele. It is then noticed that the part of Tibbe's intestine they operated on directly after birth, is leaking. That's not very good news, to put it mildly. Later on it becomes clear that Tibbe cannot be fed trough a tube anymore, but he is back to parenteral feeding again. Basically that means we are back to the situation just after Tibbe's birth.
Combined with the communication troubles of today, this leads to a fit of crying with Mummy and Daddy
In the evening we kiss Tibbe goodnight while he is sleeping quietly. He is being ventilated, gets dormicum to stay relaxed and parenteral feeding and antibiotics through his central line.
Day 22 (Monday July 14th)
Today Tibbe's situation is fairly stable. The omphalocele was unwrapped again and it does look fairly well. Tibbe is sleeping quietly, so we don't bother him by taking him out of his bed to lie on our lap.
In the evening Esther comes to visit. Tibbe gets yet another music box, now one in the form of an umbrella. He now has three, but all with different lullabies.
Day 23 (Tuesday July 15th)
Again a stable day. Tibbe does well and sleeps a lot. They continuously adjust the ventilating machine to encourage Tibbe to breathe himself. The infection seems to be under control. They have examined the omphalocele again and the doctors are very satisfied with its condition.
Suzanne and Gert-Jan come to visit from faraway Groningen. They bring a very nice Tibbe-train (and even more presents, Tibbe is being spoilt).
Day 24 (Wednesday July 16th)
Tibbe is doing allright. The omphalocele was unwrapped again and the little leak does not produce a lot of fluid. Tibbe will have to do without proper feeding for a while though, to give the intestines some rest. In the last few days it was quite often announced that Tibbe would go of the ventilator relatively quickly. Today is the day. When we come back after a meeting in the afternoon he's lying in his bed without the tube. He has a 'low-flow tube' again that breathes extra oxygen into his nose. The doctor is quite satisfied with his condition.
In the evening Marian comes to visit and Daddy goes rollerblading.
Mummy and daddy were not doing so well last night, because they left the video-camera and the photo-camera (and the cell-phone, and a wallet, and a pair of sunglasses) in the cycle bag on the bike. The bike was parked in front of the house (so not in the shed). So everything is gone.
So, no pictures today
Day 25 (Thursday July 17th)
Tibbe is breathing by himself for a day now and he's doing great. Only when he is really angry for some reason, he forgets to take in enough oxygen. Then they raise the oxygen percentage of the low-flow and everything is allright quickly. In the morning mummy and daddy can cuddle with Tibbe. That's a lot easier now, without the tube and so is washing him.
Again, no pictures, but... this afternoon, Mummy and Daddy took a deep breath and bought the same videocamera. So, from now on, we can show new pictures.
Day 26 (Friday July 18th)
Tibbe is a bit boring today and that's only for the best. He makes funny noises and sleeps on our laps. The omphalocele has been unwrapped and it looked good. Tibbe's breathing is also going well. Only when in stress (injections, washing, moving him) he keeps forgetting to take in enough oxygen. And he's breathing a little to fast, but that's what we're used to.
In the afternoon daddy picks up uncle John's present. In the evening Anne, Grietje, Ferjo and Timon drop by (on the way back from Luxemburg).
Day 27 (Saturday July 19th)
Mummy and daddy have slept late today and are in the hospital as late as half past 10. Tibbe lies in bed, freshly washed and can lie on our lap immediately. All the news is good. The problem that remains is that Tibbe 'forgets' to take in oxygen when he is stressed and then becomes short of breath. Therefore he gets 100% oxygen on his 'low-flow' more or less permanently.
When mummy and daddy go home, they meet up with other parents (those of Justus and Lara). It's nice to be able to share your thoughts and feelings with other parents with their child in the hospital.
In the evening the upstairs neighbours, Marco and Pauline, come to visit. They bring a very cute cuddly duck and a nice coat. And very nice flowers for Mummy and Daddy, it's just to much. Tibbe stays in bed (and not on our lap) because he was very stressed earlier and we let him sleep.
Day 28 (Sunday July 20th)
Today Mummy and Daddy arrive with Tibbe in time to wash him. We do it quickly, because washing is always a bit stressful. Tibbe tolerates it welll and lies on mummy's lap. A few moments later uncle Carel and aunt Marleen come to admire Tibbe again. They are traveling from Friesland to France and they drop by to see how their nephew Tibbe is doing. Well, he does OK and is wide awake and looks at all the visitors.
Afterwards, we have coffee, before Carel, Marleen, Emke en Nienke continue their journey.
Day 29 (Monday July 21st)
Today Daddy's going back to work again (50% only). At 11 o'clock Mummy calls, to tell that Tibbe will get a new tube in his nose to help him breathe. It's a so-called NP tube. This tube will not pass his vocal cords so that Tibbe can still make some noise. With the NP tube they can keep Tibbe's lungs 'pressured' to prevent them from 'collapsing'. This is what happens when Tibbe is stressed and that's what causes the lack of oxygen intake every time. So we hope that this NP tube will prevent this from happening (or at least less often).
In the afternoon Daddy is visiting Tibbe. He is sleeping quietly and looks his cute and satisfied self. Of course he's breathing to fast. Tibbe continues to sleep quietly, even through all of the noise of the ICU this afternoon.
In the evening Mummy and Daddy are visiting together with Janneke. She brings a lovely present. Tibbe is sleeping quietly at first, but at around 8 o'clock his saturation (oxygen level in the blood) is dropping to low for no apparent reason and Tibbe becomes very pale. Eventually they have to remove his NP tube to ventilate him with a mouth-cap to have him regain his normal saturation level. This is successful and at about half past 9 Tibbe is sleeping quietly again, when Mummy and Daddy go home. Mummy and Daddy would not be surprised when Tibbe would be fully ventilated again tomorrow.
Day 30 (Tuesday July 22nd)
That is not the case the next morning, but Tibbe did have an 'incident' last night, in which his saturation dropped again. This morning he is sleeping quietly. Earlier this morning they unwrapped his omphalocele and it showed that the little leak has not closed yet.
After the doctors' visit they tell us that Tibbe will get morphine again, in addition to the dormicum he has already. This is aimed at (further) relaxing Tibbe. Besides that they are going to 'spray' him twice a day, with humidified air and some medicine to open up his lungs. Together with the morphine this should prevent 'incidents' like the one from last night.
Again we express the fear that Tibbe will have to be ventilated completely, but we can only wait and see. For some sort of consolation we are having lunch at Hotel New York.
Later in the afternoon, when we are back home for over an hour, the doctor calls to tell us that our fears were just: Tibbe has been intubated and ventilated again. He has had yet another 'incident' in which his lungs collapsed completely. Luckily the intubation was successful without to much trouble.
Day 31 (Wednesday July 23rd)
So, Tibbe is now again completely ventilated and is doing relatively well with it. Less pleasant news is that the little leak in his omphalocele is oozing more fluids than they thought at first. Furthermore Tibbe's 'infection-parameter' has not dropped as low as it should, which could mean that he has another infection.
All in all it is clear that Tibbe cannot do without ventilation, if we want him to grow. And we want that of course, because a big, strong boy can cope much better with nasty infections and other challenges. The doctors are now putting growth first and want to ventilate Tibbe for a long time. That is, they will not remove the ventilation when he seems to do well. Furthermore, long term ventilation means that Tibbe will have to have a traceostomy tube. For how long this will have to stay is not clear, but we are sure it will at least last as long as 2 to 3 months. Mummy and Daddy are now counting on a minimum total stay in hospital of about 6 months.
Day 32 (Thursday July 24th)
Last night Tibbe's tube has been displaced, possibly by Tibbe himself. This means they have to put in another one. Luckily they succeeded without to much trouble. Furthermore they've unwrapped his omphalocele and attached a little pouch to it to prevent the fluids spreading over the omphalocele.
Because of all these treatments, Tibbe is a little cold and they give him an extra blanket. When we leave at around noon, they put the heater on. Tibbe is sleeping comfortably with his new tube.
Day 32 and further (Thursday July 24th til Saturday July 26th)
Tibbes chances have changed for the worse quite considerably. The leak in his intestine has not closed. Quite the contrary, more and more intestinal fluids are oozing out and are causing major infections. Furthermore some intestines have herniated out of the omphalocele. This will probably cause bowel obstruction and further leakages.
The doctors see only one option: they want to take away the 'crust' from the omphalocele to be able to release the intestines and solve the leakage problem by means of a stoma. The then released bowel, liver and stomach will be covered by a 'silo' for further treatment.
The chances that this operation will be successful, are minimal. The surgery will be performed on Sunday (tomorrow)
Day 35 (Sunday July 27th)
We almost didn't dare hope for it (neither did the doctor), but the surgery was successful! Tibbe is not out of the woods yet, but this was the best result possible.
We are overwhelmed and happy today. There is still hope and we did not allow ourselves to much of it. Thanks for all your support til so far!
Ronald & Mirjam
Day 36 (Monday July 28th)
Today was a quiet day for Tibbe. He was entitled to one, after this much surgery. He's sleeping quietly for almost the whole day. Only late in the evening he shows us his eyes.
On the medical front it is quiet too, luckily. The doctor has made the silo a bit smaller to ease Tibbe's intestines into his abdomen a little. He seems to tolerate his quite well. Furthermore he looks fairly comfortable. The silo is kept vertical with some ropes. Tibbe has come through his first day after surgery very well. The doctors are awaiting further developments and, at the momen, are not sure how to proceed.
Nieces Emke and Nienke have found a new place on Tibbe's bed.
At home Mummy and Daddy are helped by our wonderful friends that cook, shop and clean up for us.
Day 37 (Tuesday July 29th)
Again a quiet day for Tibbe with lots of sleeping. But Tibbe does have an infection again, so lots of blood testing and new antibiotics. Furthermore Tibbe seems to have low bloodpressure. Eventually it turns out to be an incorrectly calibrated measuring device. So that was not to bad at all.
In the evening we have a talk with the surgeon. She is still satisfied about Tibbe's condition and tells us about the plans and threats. The most important threat is the fungus infection. If they cannot fight it, it is going to be very difficult. The plan for the coming weeks is the further decrease of the space in the silo, in order to ease the intestines into the abdomen. Eventually they will try to close the skin over the remaining intestines. When that will happen, depends on how long the silo will hold.
All in all, a fairly good day, and Mummy and Daddy return home without to much worries.
Day 38 (Wednesday July 30th)
It's getting boring (luckily) but Tibbe has a quiet day again. He sleeps a lot. The infection seems to be controlled. Tibbe still has some trouble adjusting to temperature changes. There are no results yet from the blood (and urine and saliva) samples they took, so we don't know whether there are new infections or whether the fungi are developing or not.
In the afternoon the surgeon has considerably reduced the 'silo' once again, without any problems.
In the evening Tibbe cries a little, for the first time in days. Mummy's sweet-talk takes care of that. Furthermore Tibbe's morphine dosage is reduced, so that's progress too. No respiratory problems have occurred in the last few days.
So, a good day again, and Daddy can go rollerblading without worries. Mummy and Ilja visit Tibbe.
No pictures today.
Day 39 (Thursday July 31st)
Quiet day. No results yet for bacteriae and fungi from the bloodsamples. The silo has been reduced again. The morphine dosage is reduced. Tibbe is a bit more lively because of that, but also seems to be a bit less comfortable and he cries more often.
Since surgery Tibbe has had 4 good days now. The doctor calls him 'stable'. We like that word.
Day 40 (Friday August 1st)
A good day again. Tibbe is wide awake in his bed in the morning. The stopped the antibiotics.
Of course there's also a little setback: Tibbe apparently has a blood clot in the big vain to his legs. This is potentially caused by the line in his groin. They treat the clot with heparin. The line is going to be replaced (relocated) one of these days. As a result of the clot, Tibbe's legs are swollen.
Tibbe did receive many wonderful pieces of art from his nephews and nieces. At first, we hung them on Tibbe's bed, but they were easily damaged there. Now they're on a piece of rope above his bed.
Day 41 (Saturday August 2nd)
And again a quiet start of the day. Tibbe is again wide awake in the morning. Mummy and Daddy allow themselves to stay at home in the afternoon and do all sorts of household chores themselves again. It's great though that we still have some food left, made by our wonderful friends.
In the evening the surgeon reduces the omphalocele in the silo again. wordt de cele weer een stuk 'aangedraaid'. Tibbe's legs are not swollen much more.
Day 42 (Sunday August 3rd)
Tibbe is again awaiting us wide awake today. But when Grandpa and Grandma arrive, he has fallen asleep.
When we arrive in the evening, the surgeon is just starting the procedure for reducing the silo. He manages yet another centimeter. Tibbes legs have their normal size again. It's only one week after Tibbe's major surgery and he's doing great.
Day 43 (Monday August 4th)
Not a lot of developments today. Daddy has gone to work, just to explain why he isn't working yet. Tibbe is sleeping a lot. They make significant progress with the reduction of the silo. For those interested, we've made a few pictures (not for the faint-hearted).
Day 44 (Tuesday August 5th)
This morning there's bad news. The silo has burst becauses of the stitches attached to the abdominal wall have were torn. The contents of the silo/cele is protruding a little. This means another surgery for Tibbe. This will happen at 13.00 hrs. How long this will take, they don't know. Apart from replacing the silo, they will also put another central line in. Before Tibbe goes to surgery, he can lie on Daddy's lap for a while.
Day 44 part 2
The surgery was successful. The silo has been replaced without to much trouble and the new central line was put in place too.
Tibbe looks a bit swollen. That's what always happens after surgery. Despite all of the sedatives, he moves his little hands around and tries to see what's happening aroung him. It's great to see that Tibbe is hanging in there.
Day 45 (Wednesday August 6th)
Tibbe was a bit cranky this morning. He did not actually cry, but he had a dissatisfied look on his face and he was very agitated. During the morning he calmed down a little.
Uncle Carel and aunt Marleen came to visit and brought a new balloon.
In the evening Tibbe was fairly quiet. Marieke and Peter-Jan came to visit and Daddy went rollerblading again.
Day 46 (Thursday August 7th)
This morning Tibbe is very sleepy and looks comfortable and satisfied. The surgeon has reduced the new silo a bit again.
In the afternoon Mummy and Daddy have a talk with the doctor to recapitulate the things that happened in the last few weeks and discuss the plan for the future.
Day 47 (Friday August 8th)
Tibbe is wide awake this morning and we talk and play around a lot. Tibbe plays with his hair, with his ear and with his duck. And with his tube of course, but we won't allow that. Mornings like these make Mummy and Daddy very happy.
The 'infection doctor' stops by and tells that things look fairly well with respect to the fungus (Aspergillus flavus). It does not seem to grow when they try to cultivate it, and that's good news. They can find a substance that is produced by the fungus, but it's decreasing.
Less good news is that Tibbe's central line is not in the right place. To repair this Tibbe needs surgery again. This will happen next weekend, when they can find some time in the schedule.
Today Tibbe got yet another nice drawing, this time from his nephew Hidde.
Day 48 (Saturday August 9th)
Late message: yesterday evening (on Friday, that is) there was a time slot in the surgery schedule and they've replaced Tibbe's central line. It only took an hour and it is in the right place now.
This morning also Tibbe is wide awake and at 11.00 great-grandmother and great-grandfather come to visit. They were accompanied by Jos and Corrie, who can also admire Tibbe later on.
Because of the important visit, the friendly surgeon waited an hour with reducing the silo.
In the evening there's yet another setback. Tibbe's silo was torn from his abdominal wall again. Luckily the contents are not protruding as much as the last time. The surgeon puts a firm new bandage around the silo and will look at it thoroughly in the morning. This means a new trip to the operation theatre. Everybody stresses that, apart from this setback, Tibbe is doing allright. Mummy and daddy are quite peevish nevertheless. Tibbe could finally use some luck on the medical front, preferably for a longer period.
Day 49 (Sunday August 10th)
Tibbe is all ready for the surgery when we come in in the morning. All of the medication is already attached to his bed. But Tibbe has to wait, because of an emergency surgery.
Mummy and daddy go to the Euromast-park for the Day of Romantic Music.
At half past two already the surgeon calls to tell that the surgery was successful, and we return to the hospital. When we arrive there, the surgeon comes to tell us what they have done precisely.
Tibbe's silo has been removed. Instead of the silo there is now some sort of mesh that covers Tibbe's intestines. The mesh is made of the same material as soluble suture. The purpose is that the skin will grow into it and will eventually cover Tibbe's belly. To prevent infections, Tibbe's belly will be 'greased' with 'Flammazine', a kind of burn cream.
So this is yet another type of treatment. Firstly, the doctors wanted to treat the omphalocele conservatively, that is without surgical intervention. This is what we call Plan A. Over two weeks ago, this was no longer feasible and after the major surgery they continued with the 'silo-treatment' (plan B). This new treatment we call plan C. The sketchy drawing underneath shows schematically what the differences are. The oval shape at the bottom is Tibbe's belly. Only with plan B they used pressure to make Tibbe's intestines return to his belly. Now, gravity has to do most of the work again, just like with plan A. When we can find the time, we will update the page about the treatment.
After the surgery Tibbe is quite sedated still. His 'tube' is a bit loose, so they have to re-attach it. For that the doctors use a new gadget, that will hopefully result in not having to re-attach the tube every other day.
Day 50 (Monday August 11th)
Tibbe is sleeping comfortably when we arrive in the morning. We did arrive a bit earlier, because maybe the surgeon would be early to replace Tibbe's bandaging. As it turns out he will not be there before half past 11, so we have plenty of time.
Tibbe stays asleep for most of the morning and also undergoes the bandage change without much trouble.
In the evening Hester and JuliŽtte come to visit with beautiful presents, a book with 'Kleine Beer' stories and a dreamcatcher for above Tibbe's bed. Later on the situation in the ICU gets a bit hectic as new trauma-patients are brought in. Therefore we wait until tomorrow to have Tibbe lie on our laps.
All in all it was a good and fairly quiet day.
Day 51 (Tuesday August 12th)
It's quite busy around Tibbe this morning. Somewhere in between luckily they find time to put Tibbe on Mummy's lap. Daddy has put up the work of art by DaniŽl (from Paris). Afterwards the surgeons move in to look at Tibbe's belly again.
Mummy and daddy are back early in the afternoon. It is hectic again on the ICU. Tibbe sleeps through all of it without trouble. He is very active with his hands.
In the evening mummy and daddy have a reunion of 'Samen Bevallen'. They are very curious to see what Isabelle, Mira, Mabelia, Koen and Eva look like. They all look gorgeous, even on a picture that's to dark. Afterwards, mummy calls the hospital to check how Tibbe is doing. He's doing fine. We'll see him again tomorrow morning.
Day 52 (Wednesday August 13th)
Quiet day, little news on the medical front. They've changed Tibbe's bandaging and everything looks OK. Tibbe has a slight fever, but it's almost negligible.
Papa did put up some new works of art, by nephew Kelvin and niece MuriŽl.
In the evening Lisette and Ingeborg come to visit and Daddy is going rollerblading again. Tibbe gets a nice new sweater and a pair of socks.
Day 53 (Thursday August 14th)
Again a quiet day, with little or no medical news. Bandaging changed, everything OK. Mummy and Daddy had a longer talk with the doctor about recent events. It's comforting to know that Tibbe's stoma can be repaired without to much trouble. However, now it's to early for that.
In the afternoon Daddy goes to visit great-grandpa, with nice pictures of Tibbe as a birth-day gift of course.
In the evening Mummy and Daddy visit the 'pleinbioscoop', in the park next to the hospital.
Day 54 (Friday August 15th)
Tibbe was a bit restless this morning, but when Mummy and Daddy arrived, he was soon back to his comfortable self. So, a quiet morning again. Tibbe played with his new cuddly fish (a gift from Edward, Mireille & Eva and Hans, Denise & Isabelle).
In the evening grandparents Danny and Wil come to visit. Tibbe is very awake and alert and looks at everybody very focused. Later that evening Tibbe has a saturation dip. The last time that happened was quite a while ago, so this is unexpected and a bit worrysome. Especially when Tibbe dips even deeper. In the end. Tibbe is sleeping quietly, and Mummy and Daddy go home instead of to the movies.
Day 55 (Saturday August 16th)
In the morning they tell us that Tibbe had yet another incident with a saturation dip. Because of all the stressful events, we let Tibbe lie in his bed. He is also a bit restless, but he is again easily comforted.
In the evening Tibbe is lively and maybe a bit restless. But he's looking at Mummy and Daddy all the time. Eventually he falls asleep at around eight and Mummy and Daddy head home relatively at ease.
Day 56 (Sunday August 17th)
Tibbe slept through last night without any 'incidents'. In the morning he is sleeping comfortably in his bed. Grandpa en grandma come to visit, and only see a sleeping Tibbe. Only at twelve, when the resting time begins, he opens his eyes for a little while.
In the evening Mummy and Daddy come back and Tibbe is a bit more lively. He can lie on Mummy's lap. When he goes back to bed, he has to make a phonecall.
Day 57 (Monday August 18th)
Tibbe is sleeping quietly again. When we wash him, we see that his stoma-sack has come loose and the bed is quite dirty now. Rapidly they change the stoma-sack, we finish the washing and Tibbe can lie on Daddy's lap. Then it is easy to change the bedsheets.
Tibbe is very busy with his hands. His tubes, his central line, nothing is safe for his grasping little fingers. Mummy and daddy think that the 'crispy duck' is a much better toy.
In the evening uncle John comes to visit. Soon after he has left, with the changing of Tibbe's diper and emptying the stoma-sack (we learn to do that ourselves), we notice that Tibbe has wet his bed in spite of the catheter and diper. Together with the nurse we change Tibbe's sheets. It's great to do something for Tibbe by ourselves for a change.
Day 58 (Tuesday August 19th)
Tibbe is again sleeping in the morning. Daddy has a constructive talk with the company doctor in the afternoon about his sick leave. In the meantime Mummy buys a very nice new toy for above Tibbe's bed: Tibbe is constantly grasping his tubes which he cannot. We hope to distract him a little with the new toy with lively colours. Mummy brings even more colourful toys from home.
Later in the afternoon Mummy and Daddy visit one time extra because they want to learn 'baby-massage'. Tibbe is wide awake and firstly we show him his new colourful toys. Mainly to the amusement of the nurses and ourselves. But Tibbe is also smiling. The massage does not please him immediately, but maybe it was a bit to much after all.
In the evening Jan and Felice come to visit, the parents of Tibbe's nephew Arthur who is only 10 days older.
Day 59 (Wednesday August 20th)
Tibbe went on a trip this morning to the X-ray department where they put a new NG tube that goes beyond his stomach into his duodenum. They will feed him through it. It's hard to feed children who are on the ventilator through their stomachs, because it can cause feeding to enter the lungs. For now Tibbe gets only small drips of feeding, just to keep his intestines active. We sleep late this morning and see Tibbe only half an hour before noon. That's why we are back early in the afternoon. Tibbe lies on Mummy's lap then.
In the afternoon we hear that tomorrow the team of doctors and surgeons will discuss Tibbe's case in much detail. One issue that will be adressed, is the possible placement of a tracheo-canula (see Day 31). Maybe they can even do it before the weekend. We are a bit overwhelmed, because of all the other developments in recent weeks, we forgot about the canula and did not think about the pros and cons of this solution.
In the evening Daddy goes rollerblading again and Mummy's colleague Peter comes to visit. Tibbe is cheerfully awake the whole evening, with his eyes wide open. Peter also brings a book from the 'Grote en kleine Beer', just like the other colleagues did last week. We now know that they are to busy at SGBO reading this website and do not have time to coordinate gifts for Tibbe!
Day 60 (Thursday August 21st)
Tibbe's Grandpa Anne celebrates his birthday today. Hurrah!
Furthermore everything is well today. In the morning Tibbe is already awake when we arrive. We wash him thoroughly and Tibbe is undergoing it calmly.
In the afternoon we have a long talk with the doctor to summarize what happened in the last few weeks. Tibbe had several surgeries that have led to the current situation, which is not to bad. Now, we can look ahead again. With the new 'duodenum' tube they've put in yesterday, Tibbe can be fed 'normal' feeds again. They build it up slowly and will also enrich it with extra proteins, to enable Tibbe to grow skin on his belly more quickly.
Furthermore Tibbe will stay on the ventilator for the weeks/months to come. Without it, taking in enough oxygen simply takes to much energy. To make the ventilation as comfortable as possible, Tibbe will get a tracheo-canula. Because there's a 'surgery-slot' available they will already do that tomorrow. We're not overly pleased with yet another surgery, but the doctor ensures us, that Tibbe can handle it, and will benefit greatly from it.
On the question what is Tibbe's general condition, the doctor answers that he cannot promise that everything will be allright. Tibbe is fairly stable now, but if Tibbe grows sufficiently, the skin on his belly especially, and further infections stay away, he's moving in the right direction.
In the evening Tibbe is awake again and looks at Mummy and Daddy and at the farm animals on his new toy above his bed. And of course he tries to pull his tube every other minute. That's the purpose of the gloves in the picture. Mummy and Daddy go home early. It has been a long day in hospital again.
Day 61 (Friday August 22nd)
Tibbe is two months old today!!
They are preparing Tibbe early in the morning for his trip to the operation theatre. But he can lie on Daddy's lap for a while. As it turns out, he will not go into surgery until 14.30 hrs. He will be gettin a tracheo-canula.
The surgery went fine. Tibbe is, of course a bit sleepy, back on the ICU at five a clock. He looks at Mummy and Daddy and then falls asleep again. He looks utterly cute without the sticking plaster over his nose and upper lip.
Day 62 (Saturday August 23rd)
Tibbe is lying in his bed cheerful this morning. Firstly Mummy and Daddy wash him and put on a nice clean sweater. Secondly the surgeon drops by to change the bandaging on Tibbe's omphalocele. The omphalocele looks nice, clearly skin is forming and the organs are seemingly falling back into the abdomen, so that the bulb is getting smaller. So, that's looking allright.
In the afternoon, mummy and daddy buy nice new clothes for Tibbe, on sale.
In the evening Tibbe can lie on Daddy's lap.
Day 63 (Sunday August 24th)
It's a quiet day for Tibbe. Much of sleeping and very little news. In the morning on Mummy's lap, in the evening on Daddy's. We want more of these days.
Day 64 (Monday August 25th)
Tibbe gets a bit more feeds today and a little less morphine. It's a busy morning with doctors who want to unwrap Tibbes omphalocele and take blood from him. And Mummy and Daddy that wash Tibbe. Tibbe also lies on the scales today and weighs a very good 3925 grammes. Tibbe is cheerful and awake under all the attention and again lies on Mummy's lap.
For those who think that Tibbe is always looking very bright: sometimes he is very cross-eyed.
In the evening Tibbe is lying on Daddy's lap and Joos comes to visit. Joos brought a very nice Norwegian friend for Tibbe.
Day 65 (Tuesday August 26th)
Tibbe gets even more food through his tube and the morphine is stopped today. Other than that, it's a quiet day: In the morning on Mummy's lap, in the evening on Daddy's lap.
Before we go home in the evening, Tibbe has to cry a little. A bit long, actually, but finally Tibbe is sleeping contently when we go home (a bit later).
Day 66 (Wednesday August 27th)
Tibbe is beautiful. After his dayly washup, we put on a real baby-suit for the first time. Now he can sit on Daddy's lap even more beautiful.
In the evening there's a surprise: Tibbe is in the maxicosi! Now he can look at the pigs and cows even better. Tomorrow Mummy and Daddy will bring Tibbe's own 'cow-cosi'. Of course Tibbe lies on Mummy's lap for a long time this evening. But first, Daddy puts up the wonderful butterfly made by nephew Jaden.
This was a wonderful day.
Day 67 (Thursday August 28th)
Tibbe wears his new outfit, that Mummy bought for him yesterday. It is again a quiet day. A bit more feeding, a bit less dormicum, on Mummy's lap in the morning and on Daddy's lap in the evening.
In the evening Ilja comes to visit. Tibbe is crying a bit just like the previous days, but eventually he's sleeping quietly, when Mummy and Daddy leave the hospital.
In short, another beautiful day.
NB: for all the Tibbe-fans out there: A Tibbe movie!
Day 68 (Friday August 29th)
Again a quiet day, with one main event: Tibbe gets his first vaccinations. It only hurted for a little while. Tibbe sleeps a lot and can yawn beautifully.
Tibbe received two new beautiful drawings, from Celeste and Blaise, the daughter and son of Daddy's colleague Didier.
In the evening Tibbe is a bit tearful again, with a little pout.
Day 69 (Saturday August 30th)
Tibbe has a quiet day again, luckily. Still some pain from the vaccinations but no further problems. Grandpa and grandma come to visit. Mummy and Daddy have a talk with the doctor about the current state of affairs. They are satisfied but there are still two main concerns: the slumbering fungus infection and the lack of skin-growth on the omphalocele. This is monitored constantly.
Day 70 (Sunday August 31st)
Again a quiet day.
In the evening Tibbe as a somewhat longer fit of crying again, but as always, he falls asleep eventually.
Day 71 (Monday September 1st)
And again a quiet day. Mummy goes to hospital by herself in the morning and Daddy goes back to work and goes and see Tibbe late in the afternoon.
In the evening we go together. Tibbe is relatively awake and can play with his blue fish very well.
Day 72 (Tuesday September 2nd)
No news, a quiet day. Mummy's colleague Christine comes to visit in the evening.
No pictures either
Day 73 (Wednesday September 3rd)
It's getting boring: again a quiet day. Mummy goes to hospital in the morning by herself and Daddy works and visits Tibbe late in the afternoon.
In the evening we go together. Tibbe is wide awake and Mummy's colleagues Laurens and Sergio come to visit. Before Mummy and Daddy go home Tibbe has quite a long fit of crying.
Day 74 - Day 77 (Thursday September 4th till Sunday September 7th)
Quiet days, with only few new developments. Tibbe's 'crying hour' is sometimes a bit more intense. Good news is that skin is beginning to grow over the omphalocele. Furthermore all feeding goes through the duo denum tube now, so not trough the central line anymore. The same goes for the midazolam. When everything is allright with the tests concerning the fungus, that medicine can also be given through the feeding and they can remove the central line.
Visiting were: Greet and Feic from Parijs (Thursday), Grandpa Anne, Grandma Griet and Ferjo and Timon (Saturday). Tibbe is sometimes a bit vain.
Pictures day (75) (76) (77)
Dag 78 (Monday September 8th)
Again a quiet day, today, with Tibbe still a bit restless. Mama watches the unwrapping of Tibbe's belly in the morning and it looks very good. Everything is easing back into his abdomen and the surface seems to be smaller. Tibbe is weighted also: 3925 grammes. That's exactly the same weight as 3 weeks back, but back then they probably got it wrong. And instead of retaining water, Tibbe is now growing some 'lard'.
In the afternoon Daddy visits after work, for about an hour. Tibbe is still a bit restless, but eventually falls asleep.
In the evening Mummy and Daddy visit Tibbe together and Tibbe lies on Daddy's lap. That calms him down considerably and at a quarter to nine, Tibbe is sound asleep in his bed.
Day 79 (Tuesday September 9th)
Tibbe is a busy boy this morning. Mummy and Daddy do the washing and afterwards they unwrap Tibbe's belly (and rewrap it again). It looks allright and Tibbe can sit on Daddy's lap.
When we return in the evening Tibbe sits in his own 'cow-cosi'. Then he can lie on Mummy's lap. That all goes relatively well, but when Tibbe is returned to his bed, things go wrong. Tibbe is extremely upset and cries so hard, that his lungs collapse. It takes a while before they get him to breathe normally again, but eventually they succeed.
Day 80 (Wedneday September 10th)
Because of Tibbe's lung-problems he also has 'physical therapy' now. They spray some medicine into his lungs to 'loosen up' his mucus. Half an hour after this, the physical therapist try to ease the loosened mucus out by compressing Tibbe's chest. She is busy doing that when we arrive in the morning.
Tibbe had yet another 'lung-collapse-incident' last night, so we hope this treatment works. Because of all the recent stress, we let Tibbe ly in his bed this morning.
In the evening Tibbe is doing OK. He lies on Mummy's lap without any problems and is lying comfortably in his bed when Mummy and Daddy go home.
Day 81 (Thursday September 11th)
Tibbe's problem with his lungs is worrying us a bit. Today he had to more 'incidents', without a clear cause. Furthermore, Tibbe is not growing sufficiently: today 3840 grammes.
Tibbe still has a busy schedule, especially in the morning. He lies on Mummy's lap from half past 11 and she 'steals' some of the resting time (between noon and 2 o'clock).
In the evening Tibbe stays in bed because of an incident. At around 8 we turn him over to his other side, but he does not like that very much. We need to console him for a long time and even need some extra dormicum.
All in all the last few days have been a bit worrysome.
Day 82 (Friday September 12th)
Tibbe had received some nice postcards: one from Ryan, a boy from England also born with omphalocele. He is on holidays on the Greek island Kos. The other postcard is from Kelly, a girl that was born with gastroschizis. Tibbe likes the postcard very much.
Friday started with two incidents, around 8 o'clock. The rest of the day is kept as quietly as possible. Because Tibbe needs a lot of examinations, that's rather difficult. In the morning Tibbe is relatively quiet, but in the afternoon there are several other incidents, with low saturation. Tibbe is panicing when that happens. They decide to give him more dormicum. Tibbe also has a varying heart rate. The cardiologist has examined this, but it does not seem related to Tibbe's respiratory problems. The keep looking at it, but for the moment they just accept it.
When we go home in the evening, all seems quiet with Tibbe, but later that night they call us with the message that they had to sedate Tibbe completely. That way he will no longer resist the ventilator when breathing. Together with this he also gets some medicine to keep up his blood pressure and they've installed a new arterial line.
Day 83 (Saturday September 13th)
Tibbes niece Emke celebrates her 4th birthday today! Congratulations, big girl!
When we arrive Saturday morning, Tibbe has plenty of pumps
and tubes attached to his body.
The complete sedation is less bad than we expected, but when you hold Tibbe's arm, it's just like rubber. The doctors are working the ventilator all morning, because Tibbe still has saturation dips. They also drip some medicine down his tracheo-canula to dissolve the mucus and Tibbe also gets physical therapy again with the same goal. At about half past noon all seems to quiet down a bit. They remove some of the sedatives, in particular the one that relaxes Tibbe's muscles.
Mummy and Daddy remain in the hospital for most of the day, but eventually return home in the evening relatively at ease. Sometimes Tibbe's saturation dips a little, but he manages to restore it to the proper level relatively easy.
Day 84 (Sunday September 14th)
We have often described Tibbe's situation as 'not critical but with an every day chance of a critical situation'. Today we experienced just that again. After a quiet morning in hospital and a quiet afternoon at home for Mummy and Daddy, we returned to hospital where Tibbe had a serious dip in his saturation. And it seemed he could not get out of it. A chest Xray soon showed that Tibbe's right lung had collapsed completely. So not just collapsed as before, but completely collapsed due to the lung being punctured somehow. This caused a critical situation because the air from his lung escaped into his chest. The air from the ventilator that was meant to open up the lung actually caused the lung to collapse. Subsequently Tibbe was barely capable of taking in oxygen.
The doctors have put a 'drain' in Tibbe's chest to let out the escaping air and enable the lung to unfold again. And Tibbe is put on an even more advanced ventilator. Eventually, Tibbe's critical situation was stabilised again.
Mummy and Daddy were very frightened tonight. Luckily the 'critical situation' did only last a few hours.
Day 85 (Monday September 15th)
Mummy and Daddy spend almost all of the day in hospital. Tibbe is completely sedated, besides dormicum and morphine, he also gets muscle relaxant. It's not a pretty sight, and it will probably get worse, because he will remain sedated for quite some time.
On the ventilation front it's going quite nicely, despite two saturation dips. Luckily they are not as deep as yesterday and Tibbe comes out of them relatively quickly. Furthermore his lungs look clean on the Xray and there are no problems with the lung that collapsed yesterday.
Tibbe is ventilated at a high pace and the expiration is powerful. That way Tibbe's lungs stay open and the mucus is removed as much as possible.
We have seen better days, but eventually we go home at 9 relatively at ease.
Day 86 (Tuesday September 16th)
Little news today. Tibbe is fairly stable and stays that way when they reduce the frequention and the pressure of the ventilation. Tibbe remains completely sedated. In order to reduce the risk of decubitus Tibbe gets a 'high-tech' airbed temporarily. It's way to big for Tibbe and Mummy and Daddy do not like it very much, because in increases the distance.
We talk to the doctor in the afternoon about the problems that Tibbe experiences with his lung. She tells us that maybe these problems are related to the VSD in his heart. To really be sure about this, they want to do a so-called heart-catheterisation. This can only take place when Tibbe is really stable and is scheduled for next Monday. Furthermore the doctor tells us that Tibbe's condition has improved considerably since yesterday. His lungs are clean and he does well on less ventilation.
It has been a boring day, but that's not as good as it used to be. It's still very sad to see Tibbe completely sedated.
Day 87 (Wednesday September 17th)
Today Tibbe's condition is 'better than yesterday'. The ventilation parameters are lowered again and the muscle relaxant is reduced as well, without any negative effect.
This morning Kelly and her mother Greta come to visit.
In the evening the ventilation parameters have been reduced again, almost to 'normal' levels. Tibbe has had one minor saturation dip in the afternoon. They also have restarted the feeding trough his duodenum tube. Grandpa and grandma come to visit.
All in all a quiet day (for Tibbe anyway). We hope to tell everyone on many days, that Tibbe's condition is 'better than yesterday'. Luckily he started to move his tongue, fingers and toes again this evening.
Day 88 (Thursday September 18th)
Tibbe's condition is 'better than yesterday'. The ventilation parameters are lower again, and they've stopped the norcuron (muscle relaxant).Tibbe can move a bit, but is sound asleep.
In the afternoon Daddy goes to the bloodbank. Although he does not have the required number of donations, he still gets a cuddly pelican for Tibbe. Afterwards into the city with Mummy, among other things to get a haircut. At the hairdresser, the doctor calls to tell that they've started the norcuron again, because Tibbe was breathing against the ventilator again.
We go straight to the hospital. Tibbe does not look very nice and is extremely pale, in spite of an earlier blood transfusion. Daddy only stays a while, because he can no longer take it. He goes home 'to pull a blanket over his head and sleep' and Mummy stays for another few hours.
Day 89 (Friday September 19th)
This morning Tibbe looks a lot better. Less pale and less swollen. The norcuron is stopped again and Tibbe sometimes even awakes.
Worse new is that Tibbe's left lung seems to be full of mucus again. Furthermore it seems that Tibbe has and infection.
In the morning uncle John comes to visit. Later, in the afternoon, Tibbe's central line is removed, because it is always a prime suspect in case of an infection. Tibbe is lying on his right side, to spare his left lung. Besides one short incident, all goes well all day. Around noon we have a talk with the cardiologist about the heart catheterisation. They will insert a catheter into a vain in Tibbe's groin and use it to measure blood pressure in several places in his heart. They will do that under X-ray to be able to exactly know where they are measuring. The catheterisation will take place next Monday, if Tibbe is in good shape.
In the evening Mummy and Daddy visit together. Tibbe is relatively deep asleep, but can move his arms and legs. He also smacks his lips. All in all he looks content, especially when his thumb is almost in his mouth.
Day 90 (Saturday September 20th)
Today is a better day. Tibbe is awake in the morning and looks happy. The bacteria that caused the infection has been grown from the tip of his central line. So they have found the source of the infection and now they can treat it more effectively. Tibbe lets the ventilator do its work and is comfortable on both sides.
Edward and Mireille, proud parents of their lovely daughter Eva come to visit. We went to 'Samen Bevallen with E and M, and now we can catch up on experiences of early parenthood. They have followed Tibbe's story intensively and they are very pleased to see him in the flesh now. Eva is also visiting and is good company for drinking coffee. Tibbe gets yet another cuddly toy.
In the afternoon, Mummy and Daddy stay at home and Tibbe is doing great. In the evening he sleeps for a long time but finally awakes. We sing him lullabies and he moves his arms and legs about a lot. Mummy and Daddy are overjoyed with it.
Day 91 (Sunday September 21st)
Today Tibbe is clearly 'better than yesterday'. Tibbe is awake, active and is moving about the whole time. Sometimes he seems a bit less cheerful, but that never lasts.
In the afternoon Grandma Wil and Grandpa Danny come to visit.
In the evening Tibbe does not keep in his feeding. Furthermore Tibbe is still awake, cheerful and very active. He sucks a bit on Daddy's little finger and on a pacifier.
Tomorrow the heart catheterisation will take place. Mummy and Daddy will we there early to encourage Tibbe.
Day 92 (Monday September 22nd)
Today Tibbe had his heart catheterisation. This procedure took a long time (9.00 hrs. til 14.30 hrs.) and was successful.
The first conclusion is that Tibbe has increased pressure on the right side of his heart. Oxygen and nitrogenmonoxide do not seem to influence the pressure. For further conclusions we have to wait until the team of cardiologists have discussed the results. The increased pressure in Tibbe's heart is however a logical explanation for the saturation problems of recent weeks.
For the time being, Tibbe's treatment will not change very much. They do start some medicine to widen Tibbes lung artery. By doing that they hope to reduce the pressure in the right side of Tibbe's heart. We find this medicine quite hilarious since it goes under the name of Viagra.
The most important thing today is that Tibbe has come back from the catheterisation in good shape. Despite the sedation, he is almost as active as yesterday. So, Mummy and Daddy go home quite at ease.
Day 93 (Tuesday September 23rd)
Fairly quiet day today. Tibbe does well. He is active and cheerful in the morning.
When we arrive in the evening, it turns out that Tibbe was so restless, that they had to give him extra tranquilizer. He also looks very pale. Luckily this gets better during the evening and Tibbe is sound asleep when Mummy and Daddy head for home.
Day 94 (Wednesday September 24th)
Today Daddy went back to work again.
By the end of the afternoon we had a talk with the cardiologist and the ICU doctors about the findings of the heart catheterisation. There was very little news compared to Monday, but they stressed the gravity of the situation much more.
Tibbe has increased pressure in his right heart chamber. This is caused by the fact that the lung vessels that transport the blood to the lungs do not have sufficient capacity. Therefore the blood can not flow quickly enough and the pressure rises.
The bad news is that the insufficient lung vessels cannot be treated easily. From the catheterisation it also became clear that obvious measures like extra oxygen or extra nitrogenmonoxide do not work.
The only option that is left is the aforementioned Viagra, a medicine originally developed to widen lung vessels. The doctors want to start with this medicine, but are not overly optimistic about it. When it works, Tibbe has some more margin to face lung problems like in recent weeks.
Even with some extra margin Tibbe will be in trouble when he gets serious lung problems again. This could even be fatal, because other options for treatment are then no longer available.
This is what we understood so far about the bad news. It is very difficult to answer the question: "What are we going to do now?" Tomorrow we talk with the doctors again about that question.
No pictures today
Day 95 (Thursday September 25th)
Today we had another talk with the doctors about Tibbe's condition. Now, the opportunities are stressed, rather than the threats.
They've started the Viagra, to widen Tibbe's lung vessels. Because it also works on the other blood vessels, they have to check carefully that Tibbe's bloodpressure does not drop. All goes well in the afternoon, the bloodpressure does not drop.
If thing would not work out with the Viagra, there are still two other options with similar medicines. These are still sort of in the experimental phase.
All methods of treatment are aimed at making Tibbe less vulnerable to lung problems similar to the ones he had in recent weeks. When this fails, a serious infection or pneumonia can be fatal. When it works, Tibbe can continue growing and hopefully his lung vessel bed and he will be even less vulnerable as a result.
All in all we are less negative than we were yesterday. It also helps that Tibbe is quite cheerful all day, is progressing to full NG tube feeding and above all: no more saturation dips.
Tibbe cries sometimes, but is easily consoled, e.g with his pacifier. He doesn't really suck it, but does like to lick it.
Day 96 and 97 (Friday and Saturday September 26th and 27th)
Today and yesterday were good days. Friday we washed Tibbe ourselves again. The big green airbed has been replaced by a normal one. Tibbe also could lie on our lap yesterday! Tibbe is awake often and has plenty of attention for us and all of his cuddly toys around him. But he also sleeps long periods. He doesn't cry very often. In the afternoon Daddy goes to work for a while to take care of some administrative duties.
On Saturday Tibbe is also awake quite regularly, but then falls asleep for a longer period. That also happens when Grandma visits. Unluckily Tibbe has a leaking stoma pouch twice today. They cannot find the leakage, so they eventually replace the pouch. Every time that happens, Tibbes bandage has to be replaced too. Therefore Mummy and Daddy can see Tibbe's belly again and it looks incredibly well.
Daddy is busy doing economic things with GroenLinks. In the afternoon he come straight back to the hospital and Mummy and Daddy go out to dinner. This is a good day.
Mummy finds it difficult to get used to the new findings concerning Tibbe's health. It is obvious that Tibbe makes progress every day, but in the back of her mind she always thinks about new setbacks. We must cherish every good day, and the more good days we have, the stronger Tibbe gets. That's our only hope.
Day 98 (Sunday September 28th)
We completely forgot to mention this, but Tibbe has been weighed on Friday and he has grown to a respectable 4435 gram!!
Today is extremely quiet. Daddy puts up new drawings by Kelvin, MuriŽl and Florian, Tibbe is sleeping almost all day. At the moment he gets a lot of sleep/tranquilizing/pain medication, so that's not very strange. In the morning Tibbe has a saturation dip, from which he recovers quickly with the help of some extra oxygen.
In the evening Tibbe wakes up and then he is really cheerful. Playing with his toys and smiling and laughing at Mummy and Daddy.
Day 99, 100 and 101 (Tibbe's last days)
Tibbe died on October 1st at around a quarter to seven in Mummy and Daddy's arms. We've gone through some really intense days, during which we've been swept back and forth between the feeling that Tibbe should better give up and the hope that we could keep him with us somewhat longer.
On monday, Daddy goes to work. Mummy is with Tibbe in the hospital; he sleeps most of the time. Washing Tibbe results in saturation dips, so that's not done very thoroughly. Mummy has a phonecall with the company doctor and it's not a very nice conversation. Therefore Daddy returns from work early and we go straight back to the hospital. Tibbe still sleeps a lot, is easily agitated, but does reasonably well.
During the night Tibbe's saturation dips very seriously. The nurse calls at around three, that they have succeeded in bringing Tibbe back to a normal saturation level. They had to use muscle relaxant (Norcuron) again. We barely sleep for the rest of the night and return to the hospital early Tuesday morning.
Tibbe is sucking his own fingers this morning. By noon, Tibbe gets an enormous saturation dip, very deep and long. Eventually the doctor manages to get him back to level, with the use of hand ventilation. All in all this takes about one and a half hour.
It is clear to us that Tibbe will not take this a second time. And even if he could, you have to ask yourself whether it would be just prolonguin his suffering. Together with the doctor we decide that if something like this would happen again, we would let Tibbe go.
After that, things aren't so bad. Tibbe's saturation is stabel on a high level and the blood gasses are surprisingly good. But Tibbe has to get a lot of sedation in order to stay calm and accept the assistance of the ventilator. Instead of Viagra, he now gets Flolan, a powerful vessel dilator that is dripped straight into his lungs.
Mummy and Daddy stay in the hospital, also at night. The nurses bring a big bed, so that Mummy and Daddy can lie next to Tibbe. Especially Mummy has a hard time with the idea that there still might be some hope. Tibbe does remarkably well during long periods. At around three o'clock at night it seems that Tibbe needs so much help from the ventilator that we find the situation no longer acceptable. They wake up the doctor and by the time he arrives, Tibbe is stable again. The doctor goes back to bed, and there is some hope again.
On Wednesday Tibbe does well again. This morning he plays with Mummy's finger and puts it in his mouth. Daddy is asleep for awhile, because he didn't last night. Around noon, Mummy sleeps for awhile. Tibbe still gets lot of sedation, almost every hour. During these difficult days we got a lot of support from Ilja, Marieke and Eveline. By bringing us things, making food and being there for us.
After a quick dinner, Daddy tries to get some sleep again. Mummy talks and sings to Tibbe, when the doctors drops by to tell that he will go to a conference for a few days and that he has discussed Tibbe's details with his colleagues. And then, all of a sudden, Tibbe decides that enough is enough. Together with the nurse, Mummy lifts Tibbe to put him a bit higher in his bed. Tibbe's saturation drops rapidly, but then there's some interference and the saturation is not measured for about a minute. When the number comes back on the monitor, is says zero. Tibbe has decided that this is the end.
Daddy is waken up, and the doctor removes all of the tubes. Finally, he disconnects the ventilator, and Tibbe lies with Mummy and Daddy on the bid bed. In our arms he passes away.
Afterwards, we wash Tibbe and put his clothes on, pack our things and walk with Tibbe in the maxicosi to our car. At home, Tibbe can finally lie in his own bed, in his own room.
On Thursday, we arrange all things that have to be arranged. It's a very busy day, and it's good to talk to so many people. Tibbe's funeral is planned on Monday, we pick a card and make a text. And we make a final update for the website.