One of the things that Wessel and I spoke about when Tabitha was born, was just how fragile a little baby like that is. If the medical personnel did not act quickly and did what needed to be done after she was born, she would obviously not have made it. We think our bodies are strong and can handle a lot more, but then we realised that actually our lives are just as fragile. It only takes a motor accident or a deadly virus or something similar to wipe out our lives in an instant. We are not tough or untouchable just because we weigh more and have functioning organs. It was a wake-up call for us both. Nothing is certain in this life, there are no guarantees of tomorrow. We can so easily get caught up in our own little petty day to day activities and just miss out on what life is about. Re-analyse your priorities. Narcissism and self-absorption is an abomination.
But before I get carried away, let me first tell you about today, day 43. This morning first thing she went for the CT scan of the abdomen. I accompanied her in her traveling bed all the way to the radiology department again, but this time they did not allow me to come in and assist with holding her legs straight as they did the last time, for some reason. I had to wait outside and sign the consent form. If the doctors can see (a) that she has no more infection or funny fluids in her abdomen and (b) that her fungal infection count has decreased from 500 to below 100, they will know that it is safe to continue doing the shunt operation tomorrow.
In the afternoon the three doctors (pediatrician, neurosurgeon and pediatric surgeon) all gathered around her bed while I was in the middle of a kangaroo session. They reasoned this way and that way, trying to decide what route would be the least risky. The blood tests came back and showed that her fungi infection count has gone down to 160, which is much better, but still not ideal for shunt purposes. So without seeing the results of the CT scan, the surgeons decided that they would rather not do the shunt or the ventricle tap tomorrow, but wait until Saturday (the first next opening they both have in their schedule), and then do the shunt operation when Tabitha has had enough time to recover properly from the fungal and bacterial infections. I was so relieved because I honestly was not prepared to let her get the ventricle tap. It is just another hole in her body with more chances for infection and other complications. Nevermind the extra trauma she'll have to endure. I believe it is a wise decision. Her head is the same today as yesterday, so I believe waiting an extra few days will not make a big difference.
There are days that I feel like I'm going to loose my head in the NICU. Like today. There are three new babies now, so it is a full house again. It can get very busy and noisy in there with alarms beeping everywhere, people coming in and out, nurses doing their routines, babies crying, etc. Whenever an alarm goes off, which is all the time, I look to see if it is Tabitha's monitor warning of 'low respiratory rate', 'low saturation' or 'extreme brady'. She also cried quite a lot today, and I find it very stressful because I know she is hungry and there is nothing I can do about it. At least she'll start feeds again tomorrow. It also doesn't help my frustration if the nurse on duty gives me answers like 'babies can do anything' when I ask a question about Tabitha's heart rate skyrocketing. Silencing the alarms without responding to them does not seem like good nursing to me. Not that all nurses are like that. Some of them are really brilliant. But when you don't have confidence in the nurse on duty you feel like you can't leave.
Ok, but lets continue with 'Explain her brain' (PART II).
On day 22 they tried the conventional ventilator (the blue machine) on her for the first time, to see if she can cope, so that she can go for the MRI scan. At first things were a bit shaky with her pH dropping. But then it seemed to go ok. On day 23, the day of the MRI scan, things seemed ok too. Her blood tests looked good, but her pH was still a bit low. After every three hourly blood gas result they would try another setting on the machine to see if it would correct the pH. But it kept dropping. She also seemed to get fits again. By 4pm, when she was due for the MRI scan, Wessel was very worried and rushed to hospital. After the scan, which is done under aesthetics, she got terrible fits again and they put her back on the oscillator, with the settings way up. Insensitivity to the stressful situation by a staff member also did not help. By this time I was close to tears. No wait, I was crying my eyes out. Wessel, unfazed and unintimidated, took me home and went back to hospital in the evening by himself. Taking it easy and going to bed early would do me good, he said.
Day 24. I knew that it would be a difficult day. When I woke up in the morning I told Wessel I want us to pray together. Then he said he was going to phone the neurologist to make an appointment to discuss the MRI scan results. He told me that he had seen the MRI scans the previous evening, and it doesn't look good at all. Hydrocephalus was not the only problem there. Some of the brain tissue was damaged at birth and the swollen ventricles now take up about 65% of the space and the brain only about 35%. He overheard the doctor on duty say something on the phone about severe brain damage.
We cried together a bit. But then we stopped crying. Hearing the worst possible news (I could not think of anything worse at the time) about your child is devastating to a parent, but I didn't want be sad about it forever. She is alive, and she is my child and I will love her just the way she is. Obviously God has chosen us to be her parents and that is quite an honour. He thought that we could handle it, and that he could entrust one of His children who will need special care and attention to us. And most of all I knew that He will lead us and give us strength to handle the uncertain future.
Wessel took the day off and already phoned my parents the previous evening to ask them to get on the next plane to Joburg, because he did not know how I would respond to the news and wanted me to have all the support I could get. That was after 9pm, so shame I can just imagine the chaos at my parents' house, first hearing the news, then trying to get a flight (restricted by their limited online booking skills), packing their suitcases for 2 weeks, lock up their house and get on a plane by 10am the next morning, all while my dad had only one good leg and walked with crutches after an ankle operation!
The pediatrician wanted to speak to me alone that morning. She
wanted to prepare me for the worst. She said that we had almost lost
Tabitha the previous day and that there are no guarantees that she will
ever get off the machines with limited brain function. After seeing Tabitha (she looked so beautiful!) we went to the airport. Wessel's parents were also there between flights, so all 6 of us had a meal together. Everyone was very emotional. This trial is not just ours as parents, it affects everyone. The most difficult part is not knowing what to expect.
My dad reminded me of the passage that day in Habakuk 3:17-19 and to my surprise it mentioned a 'ribbok' in the Afrikaans translation in the last sentence – my pet name for Tabitha!
Even though the fig trees have no blossoms, and there are no grapes in the vines;
even though the olive crop fails, and the fields lie empty and barren;
even though the flocks die in the fields, and the cattle barns are empty;
yet I will rejoice in the Lord! I will be joyful in the God of my salvation!
The Sovereign Lord is my strength! He makes me as surefooted as a deer,
able to tread upon the heights.
PART III to continue tomorrow!
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