I am Lela!

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.