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| Hi, my name is Tabitha and I am 6 weeks old today! |
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| Hello! |
Let me tell you a bit more about the road thus far regarding Tabitha's brain. I already told the story of what happened on that Monday, day 8 (see previous post, 'The second week') when we got news of the results of the ultrasound that she had 3rd degree intraventricular hemorrhage (IVH bleeding) on the brain. A week later, on day 15, another ultrasound on the brain was done. The report said that the ventricles are dilated, now also the third ventricle. What that basically means, in my understanding, is that the little holes between the ventricles of the brain have been blocked to a certain extent by the red blood cells and clotted blood from the bleeding. The spinal fluid (CSF), that is normally formed in the ventricles of the brain, and moves through the 4 ventricles until it reaches the spinal cord and is reabsorbed in the body, can therefore not filter through to the spinal cord effectively because of the blockage. This causes a buildup of CSF in the ventricles of the brain. This condition is called hydrocephalus. Hydrocephalus is common when serious head injuries occur, e.g. car accidents, falling on the head, etc. But it is also a common occurance in premies. A shunt is a device that they insert below the skin, connecting the ventricles to the tummy, and drains the excess CSF via a small tube. If the CSF is not drained, either naturally or by a shunt, pressure is built up in the brain by the constantly growing ventricles, and the head will grow.
Fortunately in babies, the skull is not 'locked' yet, so it can release a lot of the pressure by expanding according to the size of the ventricles. When I spoke to the neurosurgeon this morning, he also said that her brain does not seem to be under pressure, but it keeps growing, so nevertheless, she urgently needs a shunt. It has grown in the last few days with 0.5cm per day in diameter. They will make a definite decision tomorrow, after the fungi test and CT scan of the abdomen is done. But if a shunt seems too risky because of the bacterial and/or fungi infection, he will have to do a ventrical tap. Now that is not something that seems pretty. It is also a theatre procedure, where another hole (separate from the one already made for the shunt operation) will be made in the head and skull, and a tube will be inserted, through which they can extract CSF from the ventricles on a regular basis. This is just a temporary solution, so when the time is right she'll have to get the shunt operation as well. It is not something the doctors like to do, it is more like a last resort if they don't have another option, because infection and/or hemorrhage can occur and cause damage.
So on Tuesday morning first thing, there will definitely be an operation, whether it is for the shunt or for the ventrical tap. No need to say that my whole body feels lame just talking about it.
On day 17 an EEG scan was done. It measures the brain activity and can pick up possible seizures. The results did not look desirable. Over the next few days I witnessed a few very distressing fits/convulsions/seizures. First I did not recognise what turned out to be seizures as anything abnormal. You have to know what to look for. Sometimes its just a jittery movement of the chin, tongue, or arms. It is normally accompanied by the O2 levels dropping. Sometimes it ends quickly, but sometimes it lasts for half and hour and there is nothing you can do to end it sooner. The nurses take it pretty seriously and phone the doctor immediately when they pick it up. Then the doctor will prescribe another drug. She has been on Phenobarb (an anti-seizure drug) for quite some time already, but they then give additional medication to try and suppress the seizures. It was a very stressful time – you're not sure if the seizures are doing any harm, but gathering from how reactive the staff is to it, it seems pretty serious.
The one time I was changing her nappy, and all of a sudden she turned blue and the O2 levels dropped. I just stood there, like a frozen log, until she recovered, which took a while. The nurse did something to try and help I think, as I was obviously of no use. After an event like that you feel so exhausted and emotionally drained. I just couldn't bear to witness another incident like that. After this event the doctor decided to put her under heavy sedatives. She was knocked out for a few days, she could not even hold your finger properly.
Another ultrasound of the brain, done on day 19, showed that there was more swelling of the ventricles. On day 20 it seemed like the seizures had stopped, but during the night she started getting them again, even though she was on medication to suppress it. At this point in time she was still on the oscillator breathing machine, which presented a problem for getting a shunt or a proper MRI scan done. The neurosurgeon didn't think that she would survive a shunt operation at this stage, as she was too sick to handle aesthetics and 2 hours of theatre without the oscillator. So he ordered a MRI scan as soon as she could come off the oscillator to see what was going on on the rest of the brain.
Ps. Wessel and I both kangeroo'd our precious Tabitha again today, taking turns in going to hospital. For some reason she gets the hiccups quite often. Who knows why, she's not even getting food. Her hiccups sound a little like the squeeze of a squeezy toy. So cute!
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