Day 44 & Explain the brain (PART III)

Explain the brain (PART III)

Continued...from day 24. We went to see the neurosurgeon in the afternoon to discuss the MRI results. She was actually a bit more positive. After all the bad news of that day – doctors doubting if she will even make it at all – moderate to severe brain damage did not even sound so bad. The fact that the doctors decided to give her a shunt the following Tuesday (see 'Day 30') was positive in itself. It meant that all was not lost and that they think she is worth a chance. But she'll have to get strong enough to come off the oscillator (again). I asked the neurologist what the chances are that she does not have the necessary brain function to breathe by herself. But she said that the fact that Tabitha has shown improvement on the oscillator and settings have gone down gradually, is a sign that she will be able to breathe by herself. I was so relieved. I don't want to walk away from all of this without a baby to show for it! The previous few days and next few days was the time that I most thought of the possibility to loose our little girl. I realised that it was not in my, or anybody else's control. But I was not ready to let her go. 

What struck me during this very difficult few days was that somehow I was better prepared to handle it then, than I would have been during the first week or two. It is as if I was being gradually prepared for what was still to come. 

I'm not gonna lie, there were times that I got so frightened by what (and nobody can tell you exactly what) was still to come. Moderate to severe brain damage. That is such a wide spectrum, but the only way to find out what her condition will be like will be to watch her grow and develop, and learn from there what she can and can't do. I started reading up on different grades of CP (Cerebral Palsy) and that dit not do me any good. I became so negative so I decided to rather read something else. Like stories of other mothers with similar scenarios, books on trusting God and the Psalms. David is a wonderful example of trusting God in difficult times.

The doctor also said that the first thing we should do if Tabitha survives the operation and gets out of hospital is to get a damn good therapist. Physio and OT can help to improve the brain, especially when starting early. But our hope is not in that. God can still do a miracle if that is his plan for her life. But like Daniel said (paraphrased) – God can save us from the fiery furnace, but if he doesn't, we will still serve him. We are not here to prove that God answers prayers, we are here to be living monuments of His grace.

On day 28 she became jittery again (possibly seizures) after they slowly weaned her off the medication that sedated her for a few days. The doctor suggested to put a weighted blanket on her. That worked like a bomb. It helps her to keep calm as well. The only place that seems to stock them on this side of the world is Dischem at Fourways, if anybody is interested. Quite a neat little invention, I thought.

My favourite song to sing her during this time (and even now) is a song based on Lamentations 3:21-30 – The steadfast love of the Lord never seizes, His mercies never come to an end. They are new every morning, new every morning. Great is thy faithfulness oh Lord, great is thy faithfulness.

The big challenge ahead was that Tabitha's lungs would become strong enough to cope on the blue machine and that she would survive 2 to 3 hours in theatre under aesthetics. The day before the operation we had a meeting with the pediatrician and the neurosurgeon, who explained the complications of the scenario. He said that the procedure itself is simple, but Tabitha's condition is complicated because she is still so sick. Fact is she might not make it off the operating table. Grim picture. 

They were supposed to start her on the blue machine on day 29 to see how she copes, but by the evening she was still on the oscillator. The operation was scheduled for 8am the next morning. Nevertheless we went to bed that night, prayerfully, and by God's grace had a good night's rest.

The rest of the story follows in my first post, 'Day 30'

I like my dummy and my mommy.

Day 44

Today was good because Tabitha could start her feeds again! Only 5ml of breast milk every 3 hours, but its better than nothing. Tomorrow they will increase it, until she can handle full feeds again. She also likes to suck her dummy. The premie dummy is now too small for her, she now takes on a proper sized dummy! When I arrived this morning the one nurse told me that she has the cutest little voice. I thought it was just me but there you have it. Coming from someone who is not her mother. She has a cute voice people! One of these days I will record her gentle, teeny weeny crying, but at the moment I just try and comfort her! It can't be nice if people bother you the whole day when you try and sleep. She also showed magnificent strength when I was kangeroo'ing her. For some reason she got upset and arched her back and lifted her head off my chest. Not sure if it means anything but I try my best to share everything! ;)

Ps. excuse the colouring on most of the pictures, I don't like flashing her eyes and the light is not always too great!