Day 47

Tabitha was nauseous again during the night, probably due to the Diamox (diuretic drug) prescribed to try and control the CSF buildup in the brain. So they stopped the diuretics, as well as two of the antibiotics. Feeding also stopped, just for the day. Her platelets dropped to as low as 38, but they still are unable to determine what the cause can be. There is also no infection in the CSF fluid extracted yesterday. 

The doctor told me she was quite surprised to find that the CSF was not under high pressure when she did the little lumber punch yesterday. She spoke to the neurosurgeon about it, and he said that he found the same lack of pressure surprising when he opened up her head during the first operation. Hydrocephalus is normally associated with high pressure. They concluded that the only way to explain that is that the actual problem is not a blockage in the ventricles, but the lack of ability of the cells to absorb the CSF. They trace that back to a brain cortex problem, and reminded me again how much damage the brain suffered. This is not a light damage, its leaning more towards severe damage. So severe that the doctor asked me if Wessel and I have talked about what to do should she decide to suddenly stop breathing. Her bradys are also probably because of her lack of brain function. And apparently anything can still happen. Should she decide to stop breathing, they want to know if they should put her back on a machine or just let her be. Even if she does survive, we don't know if she'll be able to see, hear, walk, or have any other normal bodily functions. The type of stuff most people take for granted. I did not handle that news very well. 

Wessel rushed to hospital, and my brother in law and parents in law also arrived at hospital shortly after. Not because of the news but because they came to visit. My parents in law are here for the weekend. It was good to see them. All I wanted to do was hold my little girl and tell her how much I love her. There was a time when we didn't know if we'll ever bring her home, but I thought we were past that point. Now all of a sudden I am told that it is still a possibility. Its not that the doctors changed their mind. Its just that they see things as time goes on and then come to these conclusions. 

It is so hard if you don't know what to prepare yourself for. The only thing I am sure of is that no matter what happens to Tabitha or how she turns out to be, we are not alone because God will give us the strength to handle it. That is our only comfort. There really is nothing more to say. 

 
Then Jesus said, "Come to me, all of you who are weary and carry heavy burdens, and I will give you rest."
Matthew 11:28 

My parents in law say that Tabitha looks much better in real life than on the pictures. I must say I agree, our pictures often make her look too red or too dark or too shiny or something. They also say that she looks much bigger than when they first saw her during the first week. She already weighs 2.4kgs! She's picked up more than a kilo since birth. 

Beautiful moment with my daughter

The doctor gave her 'contrast' that will increase definition of the intestines on the x-rays. She wanted to just make sure there is no obstruction or anything unwell in the digestive system. She had an x-ray taken every 30 minutes from 11h00 to 14h00, so I could not pick her up. But at 14h00 I held her for three straight hours. She was not dressed today, because they put the heater on her and then she must be exposed so that they can monitor her body heat. So her little naked body on my chest was such an amazing feeling. I just looked at her pretty face and touched her little back and kissed her head, her nose, her cheeks, her neck, even her eyes. I just want to spend as much time with her as I can. Like I said before, she looks like a perfectly normal baby. She does everything a newborn would do. But I'm not someone to deny reality. That's not gonna change anything. If she's going to have a decent quality of life, we will need a miracle. 

I know so many people are praying, and we're praying. So I know that if it's God's will he will listen to our prayers and work it into His plan as only He can in His wisdom and sovereignty.  He is a good and loving father, who can see everything in perspective to eternity. But He will not give us something if it is not for our good. Will you give your child a car when he is eight years old just because he thinks he can drive and asks nicely? Off course not. You have the wisdom to know that things are gonna go horribly wrong and harm your child. It would be stupid and arrogant to think that we are 'better' than God. God is perfect, we're not.

I quote 2 Corinthians 12:8 from Pauls personal experience:

   ⁸ Three different times I begged the Lord to take it away. ⁹ Each time he said, “My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me. ¹⁰ That’s why I take pleasure in my weaknesses, and in the insults, hardships, persecutions, and troubles that I suffer for Christ. For when I am weak, then I am strong.