I am Lela!

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.