I am Lela!

I know it has been a while since I posted, but we simply had to much to do.

So, where are we now generally?

To make it short again, Lela is doing great! She is happy, she is babbling more and more, also more interested in all kinds of toys, … but the best is, her eyes seem to slowly regenerate and improve. Most of the time she is able to make out a person standing in front of her, seeing and grabbing little toys we hold in front of her head and I also had the feeling that she can recognize a smiling face and sometimes respond to it.

Teeth are still coming, but nights are a bit calmer now. Thank you, Lela!!! ;)

Besides that, she still has soft epileptic seizures from time to time which we try to get in control in collaboration with the UKE and homeopathy. Since they are getting softer and softer over time, we hope that they might be gone sooner or later - if not cured earlier. Also there is a huge relation between getting teeth and the seizures. The more teeth growing pain there is, the more seizures she has. Anyway, they are already that soft, as an unexperienced person, you wouldn’t really think it has something to do with epilepsy.

Also Lela made her first experience with the floor :)
It is still very very exhausting for her, but there were already small signs of trying to move forward.

Finally, after getting used to the new Hamburg area where we live now, continuing to arrange the new appartment and following our jobs, we took the chance to spend a day at the beach together.

It is now time to leave the last year behind and look forward. The worst is really over and slowly life comes back to all of us.

I can’t believe, one year can go so fast, …

… but here we are after all that chaos, desperate moments, tears and hope in the first two months of our little daughters life. Looking back now only makes us stronger and now there she is: Lela completed her first year on earth and achieved so many skills, talents and personality traits. It is just a pure gift to her smile and grow.

So all the best to you, Lela … thanks for being who you are and keep on being as strong and eager as you have been before … and may your teeth grow a bit faster so your parents might get some more quiet nights sooner or later :D

Some more impressions:

On the very recent appointment with Lela’s physiotherapist she stated that we do not have to further proceed with Vojta exercises. Currently Lela’s tension in her legs are so minimal that our physiotherapist almost spoke of a normal state.

Of course we have to observe it and in case the tensions get more again we have to start over, but currently it is a true relief that there is no need to proceed with Vojta.

Well, another little piece in the big puzzle is done :)

Also I should mention that Lela is doing pretty well. She recently started to discover items and examines everything briefly with her mouth. Furthermore I wouldn’t lie if I’d say that I recently heard her replying “Hello” when I was talking to her. Another great thing to see is the development of her eyes. A few months back she wasn’t able to react to the brightest light, … now she blinks when the camera’s flashlight is activated and follows her favorite big ball with the eyes when someone is waving it over her head. Just as I mentioned above … even if there are just one or two new pieces of the big puzzle every week or moths … they are all needed to make it complete!

Last but not least I might want to add that those Vojta exercises are by far not the very smoothest exercises you could practice with a child, but in the end it helped so much. We could literally watch Lela’s tension getting better week by week.

If you’d like to more about that, feel free to visit the offical Vojta website.

They are partly there, they hurt, they look pretty, they have to be cleaned, more are on their way … teeth!

Since Nurith was breast feeding Lela until now and our little one is getting her teeth, we think it is about time to get her used to the bottle again to prevent further “nipple-accidents”.

Problem is, she really doesn’t like to drink from the bottle yet, because she likes to prefer the breast.
So even if Lela doesn’t really drink when we practice with her, she prefers to manage it all by her own as you can see :)

Also it is about time to really get Lela to raise her head more, since this is important for everything else in development. Here you can see her in action. Everyday a bit more! :)

… but to make the long story short, Lela is doing great!

Almost every day there is something new she is able to do.
Progress is still kind of slow, but her development never stagnates … and we have all the time she needs!

By the way, so many people are worried if their child isn’t crawling with six months or walking with twelve. Every baby is different and should take as long as it needs. Why hurry?

Of course, parents should be always aware of their babies general development, but ask yourself one question:

When you had your first job interview back then, did the boss ever ask you: “When were you able to walk?” or “How many words were you able to speak when you were two years old?” :)

…

Also the first teeth are breaking through, so currently her mood is not always the best. But even if she has a bit of pain going through this, she is brave and does really well. What is that comparing to what she has already gone through!

Enjoy the little medley :)

Back then in hospital when Lela had her two embolisations, the neurosurgeons needed a lot of contrast medium in order to navigate inside Lela’s body and head while operating. The disadvantage of the contrast medium used, is a hypofunction of the thyroid.

To prevent further damage, Lela was treated with L-Thyroxine since she was in hospital. This medicament is used to recover the thyroid.
So, finally after a blood sample was taken by our pediatrist on last Wednesday and an analysis in the lab, the results showed that Lela’s thyroid was completely recovered! Finally after eight months - a fully restored and functional thyroid … and one medication less!

Simpy as the topic says, our little Lela turned over today and I think it is worth a post!
She already made it to turn from the back to the sides and back again, but today she was lying on her back when she suddenly rolled on the right side and started working with her arms and legs. We were both surprised as she suddenly flipped over after a few minutes of trying and there she was. Lying on the belly with no help of us, smiling like a sunflower.

Most of you may think, that this is normal and every child does this, but considering all the “shit” she went through, Nurith and me were really astonished that she almost did it within the range when all babies start trying to turn over (4-7 months) … and to be honest when she came out of the hospital we weren’t really sure if she will ever make it to turn over at all. Now we have prove.

Lela continues to rock the house!!

Lela recently passed the seven months mark and is doing very well. She still can not really see, but however she is reacting to light and that’s a good sign. We had an appointment with an eye specialist and she also stated that Lela’s eyes are 100%. So with this result and the VEP saying that the way from the eyes to the brain is also okay, it must be something inside the visual centre of the brain. It is now on us and other specialists to train Lela’s eyes and make the visual world tasty :)

We also do a lot of Vojta exercises with her every day and she is making big progress. Also we started to visit a Cranio specialist. The funny thing is you really can not explain what these guys are doing but through just placing the hands on certain spots on the body and the head they release tensions and help the body and brain to recover and cure. After the first Cranio hour Lela fell into a very calm and relaxing sleep and after waking up she was relaxed as she was never been before - completely without tension. We are excited what the next appointments will bring, but generally it helps a lot.

Lela also didn’t have found her sleep rhythm yet, so everything is a “bit” messed up. Since September 2007 when she came out of hospital she doesn’t sleep longer than two or three hours in one bit. We all know it could have come worse generally, but it is about time we get some more sleep soon :)

.. but besides all that it is nice to see Lela developing so well … as you can see in that little video :)

Since this appointment with that specialist we were kind of down and disapointed. Of course we know what Lela went through so far, but seeing her developing so well we really couldn’t believe what the specialist “analyzed” by just seeing her for just one hour … and on the other side, we - the parents … seeing, feeling, listening and living with her for the last six months. The picture just didn’t fit!

Of course, as said already, only time will tell how well Lela will develop, but the last recent days should change the picture:

A week later, on the 15th of January, we had the weekly appointment with Lela’s physiotherapist. We told her about the results of the specialist’s analysis, so she decided to check Lela again, plus she was doing some additional tests, the specialist didn’t even do with Lela the week before.
This time our little one was really awake, not tired and in a very good mood (what she basically is always, except when being tired or hungry :)) … and the results were “slightly” different that the others done a week before. You might have noticed the “” around slightly.
On basically all these tests Lela really showed that there is potential to learn everything a healthy child can learn … which also means, that she would be able to walk. There are no signs yet, that she never ever would be able to not walk (so we really don’t know how someone can just state for sure that someone is not able to never learn something, only by seeing someone for just an hour).
Of course we know that Lela will develop (much) slower than other kids, but concerning the situations she went through, she is really doing fine and all doors are still open. It is on us now to support her in every way possible.

The next day we had a meeting with two very friendly women who work for an organization to help and support blind and visually handicapped people. Nurith and me decided to hook up with this organization because we know that it is always better to do something, rather than just hope everything will be okay one day. Ironically we received the organizations adress from the specialist. We also told them about the results of the specialists analysis, but this time about the eyes. They mentioned that even healthy children at the age of six month still can have visual problems and there have been also a lot of cases, when even neural tests stated that the child should be absolutely blind, were proven wrong.
However, of course only time will tell, but even during the last days we kind of recognized that there is something that Lela is seeing. Not very much and not fast, but there is something, which made her eyes change over the last days … and the way she uses them.

These two meetings completely put us both back on track. All doors where still open and the visions of seeing a blind girl in a wheel-chair didn’t (and shouldn’t) completely disappear, but definitely started to look very blurry.

In the evening I realized that I didn’t check our mailbox, so I went out and found a little letter inside … sent from the UKE.

I went back in, opened it and found a little medical examination report we have waited for a long time:
During the time Lela was in hospital, there was not only EEG testing, but also VEP.
EEG is usually there to test someones brain waves activity while the VEP is the same but for the eyes. All in all two VEPs had been done and we already knew that the first one went wrong. We were still not sure if it technically went wrong … or if Lela’s brain just didn’t catch up the signals from the eyes, but according to a nurse, it was a technical issue, so the VEP was repeated at a later time - however we never saw the results of the second VEP - until today.

I phoned a lot with the hospital and it was a big thing to get the VEPs, because either doctors where not present at this time, documents went to a new place or finally have been brought to the hospitals archive. Finally someone managed to get them out of there, did copies of both VEPs and sent them to us per mail.

And there we had the results of that long lost second VEP, which made our eyes go gleamy:
Lela’s eyes carry a signal through the visual nerve into the brain … left eye normal, right eye with a few latencies.
.. or to put it more simple … she is able to SEE.

Of course, we have to again wait how much she is and will be able to see and if her brain will be even able to work through all the visual info and “understand” it, … but there is definitely hope.

… reviewing the visit at the specialist and especially the two meetings a week later, plus the letter in the evening, it is funny to see how a coin could turn!

On the 8th of January we had a meeting with a specialist who cares about babies who went through serious situations during or after birth.
After an hour of tests with a very tired Lela the specialist mentioned that certain reflexes are still there. Since most of them just stay a short while with the baby, some of these reflexes should be already gone, especially since Lela turns six months tomorrow.
However the specialist wasn’t able to say it for sure and Lela’s tiredness made the tests even more difficult, but she might bear traces of motorical problems and could be blind. How extreme the motorical problems will be, isn’t really sure, but she might not be able to walk.

It was quite a shock to hear all this. Of course we knew about all this when we talked to the doctors while Lela was still in coma back then, but it wasn’t really nice to hear it again, since she developed so fine until now.

Only time will tell how she will develop, but we make sure to do everything for her which needs to be done. We already arranged an appointment with an eye specialist in around two weeks and the physiotherapy she has for around seven weeks now, already showed very great results.
The tension in her legs got so much better, she is able to raise her head while on the belly and she got her first little meal (carrot porridge), which she tolerated and swallowed very good.
The specialist asked us to start with it, since we should test if she might be able to swallow food which is different from mothers milk.

As you can see it works out quite fine :)

Of course we are worried but we kinda stopped to get mad and crazy about everything what the docs told, tell and will tell us. You will (luckily) never be able to tell something for sure, especially when it comes to the health of a baby.
There have been situation docs gave up on babies and wanted to turn off the machines … and today? The kid is in school and doing well.

Of course not all situations turn out like this, but basically no one never ever knows what’s coming next!

It is a bit late, but we wanted to wish you all a happy new year and hope you had a pleasant and healthy start into 2008!

Lela is doing amazing progress. She finally got something like a sleep rhythm (still a bit messed up but better than no sleep at all :))
Her eyes are getting better and she starts to babble and smile even more than before. In a week she will be 6 months old. Still being a baby … but it already feels as if she has the character of an already little child. Nurith and me literally experience something new every day.

Of course we already knew that Lela rocks and kicked our butt every day, since she left the hospital, … but recently, one night during breast feeding, we got the definite proof! Just check the picture! :)

Recently our physiotherapist mentioned a product which is called the “ergo carrier”. It is basically a backpack for your child while the big advantage of this carrier is the baby’s perfect legs position. This is one of the most important things to care about, when carrying around your baby a lot … and if not done right, it might result in severe leg and walking problems.

So we ordered our carrier a while ago and it finally arrived today. Of course I couldn’t wait, so I put in the instructional DVD, grabbed my sweet daughter and a few minutes later I experienced the best carrying situation ever. Not only the baby is absolutely secure and sitting perfect, this thing is also very back friendly for the one who is actually carrying the baby. In opposite to a sling where the full baby’s weight sits on the shoulders, the ergo carrier concentrates the weight to your hips or pelvis. After a few days or nights, your back will be thankful! :)

Hey, I am usually not the advertising guy, but since this thing is healthy for your baby and good for the parents, I think it was worth to write a bit about it. With it’s approximately 100 bucks it might be a bit expensive, but I don’t need to mention that we talk about your baby’s health :)

Also I should mention that the ergo carrier shouldn’t be used before the baby reached 14 pounds of weight.

… need some time on my own! Parents, can’t you understand this? :)

Today we went to UKE for the last time this year!

Lela had an EEG to check her brain waves and a blood analysis. Since she had problems with her thyroid because of the contrast medium which was used during the magnetic resosance imaging and still has epileptic action in two centres of the brain she still needs soft medication. We already know that the epileptic brain action is still present, but due to medication she has no cramps at all. However this action is not heavy, but is just a leftover of that cerebral haemorrhage back then.

According to doctors, this should be hopefully gone within the next six months … hopefully!

Besides all that, Lela develops absolutely brilliant! There are some issues with her eyes since she doesn’t really focus for a long time, but we will know more later or just have to be patient … like every other parents too! :)

Since Lela is out of the hospital we visit a physiotherapist each week due to the artificial coma and general development of her body and brain. On Tuesday, the 13th November approximately 30 minutes after Nurith left the house with Lela I received a call.
It was Nurith telling me that she fell down on the stairs to the physiotherapists place and that something sounded very wrong when she landed on her leg. Fortunately nothing happened to Lela, which was on Nurith’s arms during these moments - but the reflexes and quick reaction of a mother are unbeatable!

So I took a cab and arrived 20 minutes later at the physiotherapist’s place. Nurith had a big swollen foot and Lela was simply sleeping. Our physiotherapist took good care of Nurith and Lela and organized the phone number of emergency surgeon.

Then everything really went fast. A few minutes later Nurith was in treatment and had an x-ray analysis. When the doc came out the dialogue was quite funny: “damaged” … “damaged?” … “yes, damaged!” … “damaged … what?”. To get serious he explained to me, that Nurith’s fibula was broken. However the fracture wasn’t that bad, so she had to relax for a week and after that they would put on cast, so she would be able to walk again.

We still had so much going on this week, plus I had a lot of work to do. The following day was Nurith’s birthday and on Thursday we had an appointment at the hospital in order to get a recheck for Lela. So I just called my parents and since they didn’t see little Lela being out of hospital, they quickly decided to visit us for a week until Nurith was able again to walk again.

Regarding the recheck for Lela on Thursday there isn’t much to tell. We went to the hospital, an ultrasound check and a visit at Lela’s neurosurgeon. Situation still unchanged, no head pressure, the treated galeni malformation looked good, so there was nothing to worry about. Good news!

Our parents including my sister Jasmin arrived on Thursday evening and the enjoyment was very big, since almost the whole family, except my other sister Tanja who had to work, was united again for a few days. It was - and still is - great to see the “grandparents” enjoying our daughter so much! :)

Our little daughter turned four months today and as you can see on the pics we have a lot of fun, enjoying life and slowly start to turn our heads into more enjoyable directions …

Lela is developing well! She is laughing and smiling all day, babbles a few syllables and is working hard to exemplary suck her thumb. In the meantime she weights around 6 kg and has a size of almost 60 cm and with 38,5 cm her head girth meets the standard. Couldn’t be better!

Today we went to the U4, which is basically the fourth baby’s check after birth.
There is just one sentence in the little examination book: baby develops age-based

Lela really develops very well. She slowly starts trying to find her thumb and navigate it to her mouth. Her eyes are getting better, she is trying to focus faces and items and she laughs a lot while changing the diapers. Also the first tries of babbling arrive our ears. Could it be better?

I am a …

… a few notes here and there! Just listen a moment ;)

This time everything went really fast. We arrived at the hospital at around 11:30. A few minutes later we went to the ultrasound and after that we had our neurologist checking Lela again. Situation unchanged! What should I say? This little girl rocks! :)

What should I say? I think everybody who was reading the story so far, could understand how we felt after all these weeks. It’s been over a week out of hospital now and Lela did really great so far. The nights without sleep started … but it was simply beautiful to be finally that close to your own child.

The first check at UKE was set for today. It was and still is very important to check Lela frequently. Is the head girth still okay? Are there symptoms for raising head pressure?

Since it could have been to leave Lela at the hospital for one day, what we definitely didn’t aim for, we arrived as early as possible in order to get all the checks and visits of doctors within this one day.
After 6 hours of waiting we had the ultrasound examination behind us and after another three the visit of our neurologist. We arrived home at around 19:30 but with a positive result - everything was as it should be. Next date was set for the 11th of October.

You should have seen the big grins on our faces when we put Lela in the stroller and walked into our car’s direction. Hell, even the feeling of walking around with her in the outside was already a big experience.

As we arrived home and I finally had my daughter in my arms, standing in our sleeping room and showing that big red star shaped light to her, my wife bought for Lela long ago and which was hanging over the diaper changing table, I had my first breakdown.

I just sat down on our bed, holding Lela in my arms and started to cry. Suddenly everything broke loose:

Ten weeks of hospital, thereof seven weeks on intensive care station, three surgeries and around four times more than a 50/50 chance that something could have gone wrong. Finally almost three weeks of coma, a possible chance for a fourth intervention, nights without sleep next to the phone, images of little coffins, dead baby faces and funerals and all these countless hours sitting next to her bed .. that was simply too much for me.

During the next minutes I really realized, that Lela so far experienced much much more, than a complete family does in it’s whole life. Also I have to admit, I scared my wife “a bit” at this moment, since she has seen me sitting on the bed with our baby in my arms - crying.
I was just exhausted and happy but the situation looked a bit different from the outside at this moment, especially because Lela was sleeping at this time. … I am sooo sorry!

Well, Lela is my biggest hero, my inspiration, my idol, my hope, my strongest fighter, my everything … and if there is any bad situation in my life to come, I just think of my little daughter, how strong she is …

… and that’s finally the main reason, why I wanted to write this whole blog.
I definitely didn’t want to only show how “cool” Lela is … no!

So far, I wrote this down to give you, the reader, some hope in dark times. Just in case you are reading this and you, your wife or your child is in a similar situation. No matter how dark it seems, no matter how much shadow there is, there is always light.
Wonders still exists and since you were reading all of these posts so far, you have just read about a big one.

But I want to be realistic also. We do not know how this whole story ends and we have to be aware to check Lela in certain intervals. We are already really thankful that people where able to save our daughters life and that it is now possible to her to move on, like every other baby too, … but that doesn’t necessarily mean she is 100% healthy.

So, never try to see the whole picture, just proceed bit by bit, believe in yourself, your family, your husband/wife and the people around you, … believe in the universe, mother nature or whatever you believe in, just really believe in it and don’t try to waste your thoughts about the future - live today!

You simply have to see it from this point of view, because we will never be able to foresee the future … and “something” could always happen to “everyone” at “anytime”. No matter how sick, injured or healthy someone is.

So just in case you are in a situation which seems hopeless, just think about what our little girl has gone through and how these “issues” where solved … and then acquire some energy from it.

Good luck to you, whoever you are and I hope I was able to spend a few rays of sunlight on a stormy day … and with this being said, I am closing the chapter of our “hospital days”!

Today we had a meeting with one of the neurologists. The doctor discussed the whole situation with us again, because of the astonishing results of the last magnetic resonance image check and finally decided that we should move on now and expand our circles and be a little bit more brave.

She suggested to put Lela in a stroller and do some walks at the hospital area …. at this point I was thinking “Oh cool, how nice to do that, but … well …” …… “and if everything works out fine until next week, you should be able to take your daughter home.”

…

There it was! The little word “home”. The word which meant so much to us, that my wife and me didn’t really know what to say for the next few moments. This was the biggest relief so far. Next week … and it already was Friday! :)

Soon our daughter would sleep in her own bed which was waiting so long for her now.

“Okay, listen! I am now heading towards a three weeks vacation and when I come back I don’t wanna see you here again on the intensive care station!”

With these words the assistant medical director approached to us and smiled, when we were sitting another day at Lela’s bed.
A rush of warm blood went through my body and I really didn’t expect to hear these words that soon. Hell, I was happy!

… but best thing, if we would have make a bet with the doc, we would have won and even beat him about one week. So Lela left intensive care station after seven weeks in general and was relocated to normal children station today on the 27th of August.

Everything was new to us when we arrived at her room this morning. No cables, no hardcore “please help, someone is dying” alarms and we were allowed to take her out of bed and walk around whenever we liked to. It was like paradise!

Sure, if you experience a normal birth, you are out of hospital after two to four days and it’s simply nrmal to carry around your baby since the first days, … but “this” was different.
Imagine you would give birth to your child and to leave her at a different place … far away from home. I really didn’t even wish this situation to the devil … but it happens … what can you do?

Whatever, another huge step was done, because if you made it to the childrens station, it also means that she will be out of the hospital sooner or later. Big grin on my face!

As you could see I am jumping a bit in time here, since the last days and weeks consisted of driving to the hospital, sitting at our daughters bed, singing, speaking, laughing, crying and holding her hands and head and driving back home to repeat the same procedure on the next day. Basically I am resuming the last days in that single post, because I am catching up now, since it wasn’t able to me to write all that during the time in hospital.

I can really tell if someone isn’t patient in life, he learns it in such a situation. Usually I am the guy who is kinda upset when a parcel takes a few days longer or a friend is an hour late … but what is that compared to this situation?!?

During all the waiting time we were really unsure what will happen to our daughter, so on one day it was kind of a relief when we had a really clarifying conversation with the assistant medical director of the intensive care station, where Lela was located.

Basically our daughter was out of the ultra danger zone. The heart slowly regenerated and wasn’t really the problem anymore. Also the malformation was treated well, but the main issue was now the blood which manage get into the ventricles in her brain. The doctor also told us that we now had to wait how she will wake up. She could be from severely handicapped to healthy, … everything was possible.

Every day we checked the medications getting less and the movements and reactions of Lela became more and more. One day, when literally the last drop of the sedating medication was spent, everything went really fast compared to the last three weeks in coma (I always call it three weeks in hell, because it must be really “uncomfortable” to have your mind trapped like this - even if she was just a bit over a month old at this time, I believe that babies in that age already have their thoughts, dreams and images).

BOOM, there she was!! She literally blew us away with her energy, the drive and her will to survive, which was definitely very strong.

The first days after she was awake the nurses, and of course we, slowly started to feed her with mothers milk through the stomach tube and every day the amount became more and more. My wife was really eager to only get the most valuable food you can get for your own child, so she was sitting day and night and carried out a lot of fights with the milk pumping machine.

Soon after the artificial respiration machine was taken away we started to give her the milk in a bottle. It just took a few days since she made it from 20 ml per feeding time to around 80 ml. Nurith was eager to breastfeed our daughter as soon as possible. Said and done, during the following days Lela started to drink the milk right away from the breast.

During the time one of the two drainages in her head got blocked, so they had to take it out. It was not sure if the other drainage would manage to drain all the blood on it’s own but everything went fine until the day, when the neurologists decided to take out the last one. That was a big step, because most of the time if a child was born with a vein of galen malformation, there was danger of developing a hydrocephalus. The pressure would not be able to regulate itself, so the child would need an artificial shunt to drain out the liquor artificially. And in Lela’s case also because of the blocked exits in the ventricles because of leaked blood.

Because every baby gets it’s chance to live without the external drains, they finally removed the last one on a Sunday evening. Ready and prepared to implant the artificial shunt on Monday or Tuesday morning. So we waited again …

It was Monday and her fontanel and head pressure was still fine … and so it was on Tuesday … and Wednesday … the last planned intervention was thrown back, day by day.

After almost 2 weeks without external drainages the doctors decided to do a last magnetic resonance image check and see what was going on, because the pressure in her head didn’t raise at all and she was vital “as hell”.
The surprise was big when the neurologists stated that the ventricles never raised the pressure. Since the first intervention everything stayed on a normal level. There was a glimpse of hope she would never need an external shunt. The day of suspension out of the intensive care station came closer and closer each day.

During Friday night to Sunday morning, Lela developed heavy cramps and the doctors assumed that the leaked blood has gone into the cerebral tissue and/or the ventricle system.

The doctors provided her with the right medication trying to dampen the cramps and decided to do another magnentic resonance image check to see what was going on.

The diagnosis was, that the leaking blood had gone into the ventricles which are located in the brain. There the blood blocked the exits for the liquor which has to drain to balance the head’s pressure. Also a bit of blood has reached two spots in the brain which were probably responsible for the cramps.

Finally they prepared another intervention to put external drainages into Lela’s head to let the blood drain out. During the next hours after the intervention the medication showed effect and Lela stayed in that narcotic condition to treat the cramps.

The basic goal was now to drain the blood out of the ventricles, regulate the head pressure and slowly get her back out of this artificial coma.
Now it was time to get patient … very patient.

Five days everything seemed to be fine. Lela was full of life, awake and started to drink mothers milk but from a stomach tube. She already made it to breath again without artificial respiration which was necessary during and after the first intervention and was quite active until today.

During the drive to the hospital a call of a doctor reached my cellphone letting us know - Nurith was already home and up on her legs again - that Lela got pale and weaker again and they were already preparing Lela for a second magnetic resonance image check.
The doctor encouraged us to drive back home since we would feel better to be at home instead of sitting at the floors of a hospital. As soon as something was decided he would inform us.

An hour later we received a call that they prepared Lela for another intervention, because they discovered that the first intervention went absolutely fine, but some veins formed to balance the changed shunt (which is basically the flow of blood). Because of these new formed veins, the heart again had to work more than it should and again Lela was in an extreme dangerous situation.

The same game again. Another preparation and another six hours intervention. I really don’t know how this could be, the first intervention went fine but now she had to go through all those risky situations again? Not really, huh?

We decided to stay at home and waited another six hours, hoping that only the one positive part of the 50/50 chances would come true. Again!

In the evening we received the expected call from the operating doctor, who was the same who already did the first intervention. This time they used a glue to close two entries to the malformation and everything went fine so far, except that they “stabbed” a vein while searching their way again to the malformation and a little blood leaked, but they were able to close this little hole right away.

The heart again regenerated instantly but Lela’s status in general wasn’t fine. Something did happen which wasn’t really clear to us.

Lela was able to stay without machines and heavy medication until now, but today after she got weaker and weaker after four days the doctors decided to do the planned intervention.

Our daughter was prepared for surgery at around 11:15 in the morning. Nurith and I went down and feelings were very mixed. We knew that this intervention was very risky and chances were less than around 50/50 the doctors succeed. “Don’t worry dad!” came to my mind.

At around 12:00 they started to operate. Planned time for this intervention was around six hours and we were told that no one can let us know about the status in between. We had to wait the full six hours to know what was going on and I experienced that six hours can easily be as long as six days.

Finally at around 14:30 one of the doctors rushed into the patients room where Nurith was resting and we all waited to get past this long waiting time. First I thought something happened, because the doctor’s face wasn’t really the most promising one (and I was also worried, because they told us that no one can give us information until the intervention was done).

Damn, sometimes it is a curse what you can read in a face in the first milliseconds, but he just wanted to let us know that the neurosurgeons found access to her head and already placed the first coils to close the veins which are leading to the malformation and that Lela’s heart instantly recovered a bit. One step ahead!

At the evening at around 18:30 we received a call from the neurosurgery to let us know that Lela is on her way back to the intensive care station and that the intervention succeeded. After a few minutes the neurosurgeon who mainly did the intervention met us personally and told us the details.

The proceeding itself was kind of weird, astonished me big time and is just possible since around 5 years.
Basically the surgeons got access with a catheter through the vein of the bellyhole and after that they put a probe into this catheter and find their way through the veins until they reach the malformation in Lela’s head. Hard to imagine but true! As soon as the malformation is reached they start to push little coils through the probe, which are basically very small platin wires of 40cm lenght. In this process they literally stuff the malformation with these coils to slow down the shunt, so the heart can regenerate slowly.

After that conversation I instantly hugged the doc, because the life of our daughter was saved a little more at this point.
Besides all that, he was the guy who stated in the evening of the 11th of July that Lela might not survive the first two or three hours. Being a father himself and a really great job done he was even more happy and relieved to announce those news.

Today was the first magnetic resonance imaging check to see what the docs could do about the vein of galen malformation.
After a little while in the waiting room, the neurosurgeon, came in and told me that the malformation is smaller than expected and not as dangerous as assumed - so Friday, the 13th isn’t as bad as it seems :)

I woke up after nearly three and half hours of disturbed sleep, when I received that SMS of Nurith at 5:00 in the morning: “Lela is already awake and fit for the day”.
I had to smile, got up and took a shower. I didn’t know what this day will bring, but it will definitely change my life for the future in either way. I looked out of the window and snow was falling in front of our house … it was July! A sign?

My parents and me arrived at the hospital at around 7:00 in the morning. Nurith was already prepared for the cesarian birth and I changed cloth and slowly started to look like a surgeon.

After a while a friendly nurse entered the dress room and led me the way into the operating room. I took place next to my wife’s head and gently put my hands on her head. Now it was time to face reality …

The doctors started to operate and during that time a 15 people strong crew was available and ready to take care about our little princess.

Suddenly one doctor said: “Helloooooo” and another one went like “Hey, welcome!!” … and then we heard her. There were two little soft cries which suddenly went silent. Instantly a nurse mentioned that they already brought Lela into the next examination room to take care about her. We weren’t able to take a look at her, since Nurith’s upper part of the body and me were behind a curtain.

It was 8:40 in the morning, our daughter Lela Amelie Ava Tamar Chaja Tallulah Marie was born with a weight of 2835 gramm and a size of 52 cm.

Suddenly the words of the conversation with the neurosurgeon came back to my mind: “If your daughter is going to survive the first two to three hours tomorrow, we have won a lot.”

I wasn’t really able to finish my thoughts when a doctor entered the room and told us, that her heart is much more stable than expected. She won’t need any heavy medications or artificial respiration. Nurith and I were really happy at this moment and we definitely knew that our daughter will make it! She will be a fighter, that was for sure!

At around 11:00 it was possible for me to see our new born daughter. Nurith was still too exhausted and too weak because of the cesarian birth, so I had to go alone. Time for the first real contact!

Two hours after birth I arrived at the intensive care station one floor below and a nurse showed me the way to Lela’s room. What happened now I really can’t describe with words. You really have to experience this situation since it is by far the most exciting moment you will have in your whole life. For the first time I met this little being, who was 50% Nurith and 50% me. It was a fusion of two loving persons.

This little girl was so beautiful and breathtaking that I instantly started to cry. Her presence was really strong and with her eyes she told me that she will fight and make it, no matter what comes. “Don’t worry, dad!”
I went back to Nurith’s bed and had a little present for her. The nurses put a little bit of blue paint on Lela’s feet and made a little print, which they gave to me. This was first contact for Nurith and her baby.

The rest of the day consisted of running around between Lela’s and Nurith’s bed, phoning with people, talking to doctors and nurses. After a 19 hours day I arrived home and had the feeling I didn’t sleep for a hundred years. She was there, she was present … and she was alive more than two or three hours. She definitely is a little but strong fighter!

After we passed the gates of the UKE, I went to the information booth to ask were we should go to …. and only by hearing the doormans voice who gently explained the desired location, I instantly felt that this is the place were everything’s going to be alright with our little one.

Another ultrasound check was taking place but this time the diagnosis changed quite a bit. It wasn’t really an aneurysm but a vein of galen malformation, which is basically as dangerous, but looking different. The vein of galen leads from the heart to the brain and on one spot in the head the vein becomes much much bigger than it usually is. Normally you wouldn’t see this vein at all, but in Lela’s head this one container-like spot almost had the size of 2 cm.

Because of this malformation the little heart has to pump lots of blood through it and was already very damaged. Imagine you would run and run and you could never sit down and take a rest. Of course the environment in the womb is a different one compared to “our” world, … but we all know that babies usually don’t stay any longer than nine month.

The gynecologist who did the last ultrasound reacted very fast, organized a bed for my wife … and the cesarian birth for the next day. Luckily we already brought our hospital suitcase with us, so we where at least prepared for Nurith’s habitation in the hospital.

The following hours felt like a bad movie. We had a lot of meetings with all kind of various doctors like pediatrists, neurosurgeons, anesthetists and so on. We went through a lot of statistics, careful discussions and explanations. It really didn’t help Lela, but since and without any exception every doctor was so nice and helpful to us, we knew now that this was definitely the right place to help us three.

In the evening we had a last meeting with a neurosurgeon and this conversation really hit me hard. The words “If your daughter is going to survive the first two to three hours tomorrow, we have won a lot.”

I drove back home, leaving Nurith at the hospital, because there was no option to stay there. As soon as I arrived home, my parents approached about at the same time. They came 450km away from home to support us in the following days … and I was quite happy about that, because going through all this alone at home, hm … don’t wanna think about that.

The following night was probably the most horrible I ever had … and about the few nightmares, between lying awake in cold sweat, I didn’t even want to get started …….. “If your daughter is going to survive the first two to three hours tomorrow, we have won a lot” …….. “If” …..

We arrived at the prenatal diagnostic center and after a little nervous while in the waiting room we met the doctor again who already did one of the bigger ultrasound check in the 22nd week.

After a long while of checking Lela again with the ultrasound, the doctor told us that he wants to discuss the situation with another doctor and will be right back. After a while he and another doctor came in and they started to examine all over and nodded to each other.

Since the check was a bit longer than the usual ones, he asked us to have another seat in the waiting room, because of other patients. So he will come back and talk to us about the ongoing situation.

We started to worry about our daughter and if the previous nine months wouldn’t have been already hard enough, we didn’t know what was happening now.

So the doctor came back and he started to explain what was going on. He and his colleague diagnosted an aneurysm, which is simply a big confusing cluster of little veins. He also couldn’t say much about this, since it is such a seldom but very dangerous anomaly.
All he could do was forward us to the UKE, the universal hospital in Eppendorf, here in Hamburg. He told us that this is a real special place for this kind of anomaly and that he assured us that those doctors could really help us. Same game: meeting on the next day, but this time no sleep at night.

It all began today when my wife Nurith and me went to the usual routine ultrasound examination. As soon as the doctor started to check the heart of our unborn daughter, I instantly knew that something wasn’t right. The doctor tried to look as serious and neutral as possible, but hell … aren’t parents the first to know that something isn’t right?

The doctor diagnosted that something might not be okay with the heart. It was a bit bigger than the usual size and also there was a little bit of a black shadow around it, which might be fluid, but she couldn’t exactly tell us what was going on. So she forwarded us to a special ultrasound prenatal diagnostic center, where we organized a meeting tomorrow.

The night wasn’t quite what it should be for, but weren’t worried that much, since ultrasound examinations can be imprecise and we all know that good doctors always assume a bit more, … so you are even more happy when there isn nothing to worry about … but it wasn’t ment to be like this.