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.
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.
