Day 36 - 37

Day 36

Monday, week 5, day 36. I'm starting to get used to the new routine of being at the hospital in time for her 3 hourly feeds, doing the nappy changing and taking a picture of how cute she looks in another oversized babygrow. I don't feel like spending time going through her stats and data that the nurses keep track of every hour. I just want to enjoy my baby now. Or at least enjoy her as much as she can be enjoyed at the moment. They closed her central line (the line for drips going into an artery at the chest) because she doesn't need it at the moment. The drip on her hand has also been removed. The only lines and pipes to be navigated around now when holding her and changing her nappy is the oxygen supply, the feeding tube, the blood pressure measurer and the thin cords measuring her breathing, heart rate and oxygen levels. And when she wears clothes most of it is covered anyway so she looks like a healthy baby. 

Let me first tell you about my nephew, Juan, who is 2 and a half years old. They live in Cape Town and him and his sister, Eze, are very eager to meet their first cousin. Anyway, Juan happens to show promising signs of one day pursuing a career in the arts. Maybe singing, dancing or playing the drums. So the other day he put on his sister's 'princess' dress and walked around saying, 'Ek is Tabitha, ek is Tabitha!' I wish I had a picture.

She spent some good time on my chest again today, and on Wessel's in the evening. I asked the nurse when I can start breastfeeding. She said I should ask the doctor tomorrow. The ultrasound lady came to take an ultrasound of Tabitha's head, while she was on my chest. XY jelly all over her hair. Shame and she hasn't even had a bath yet. But she still smells wonderful, amazingly! The ventricles in her head and the hydrocephalus have increased further, and they seem to 'compress the brain tissue significantly'. Yes, her brain remains a serious concern. I wish I could just continue to enjoy doing the normal nursing-my-baby things and not having to face what is still to come.

On Sunday night I found the courage to continue where I had left off (before she was born) with preparing the baby room. Her furniture only arrived a week ago, after 10 weeks of placing the order. I know I'm not super organised, but honestly, who has the nursery in perfect order by 30 weeks of pregnancy? I finished the filled hearts to hang from the curtain rail, sewed en extra pillow case for my weird donut feeding pillow and made a material and ribbon decorative cover slip for a magnetic board to put up against the wall. I still want to make shapes out of foam sheets and a few other things. I hope I find time before she comes home. When it is all done I'll post a picture ;) 

Day 37

Tuesday, week 5, day 37.  I was quite upset this morning. Some days, like yesterday, I am quite content to just wait patiently for Tabitha to get better. But days like today I just want to get her out of that place and bring her home. The doctor suspects that she might be developing an infection or something, because she was feverish. She also had quite a few 'brady's' (when her heart rate drops suddenly) and desaturations (when her oxygen levels drop) at night. They took bloods and sent the blood off to the lab for testing. They also did a blood gas test again, which didn't raise any reason for concern. The blood test results showed that her platelets have dropped and that her white blood cells were low. That could mean an infection somewhere, so the doctor started her off on antibiotics again while waiting for further blood results. Its better to act preventative. 

Regarding the shunt. The neurosurgeon wants to make sure that she has no sign of infection and that she is stable before attempting the shunt operation again. That's why he only wants to do it next Tuesday, the 20th. So if this is an infection she must get better quickly. If the shunt is needed, I'd say sooner rather than later, to prevent any further brain damage. I didn't like the description on the ultrasound report where it said 'compress the brain tissue significantly'. 

I missed 2 opportunities to hold her today. First of all, at her 11h00 feeding session, the nurse realised that they did not have enough milk in the fridge for her. Only 10ml. So I had to rush home to bring some supplies. I can't pick her up after or while feeding, you have to do it before. So I stayed there again until 12h15, then I went home to pick up my parents and take them to the airport. It was time for them to go home after 2 weeks of help and support in the Kruger household. The next feeding session is at 2pm, so I rushed back home after the airport, to express milk and then rushed back to the hospital. I walked in there at 2 minutes to 2, but then the nurse already started feeding her! After I told her I'm coming to hold her at 2pm. So I just stayed with her until 3.30pm, went back home and expressed some more milk to be back for the 5pm feeding session. Ahh. Finally. It feels so good to hold her. 

She opened her eyes for me again today for the longest continuous period to date. It is surreal - it feels like she is looking at me and as if she is thoroughly aware of whats going on around her. But I got tears in my eyes when I thought about the part behind her eyes that is not visible, the brain. How can she look so normal and aware when medically speaking her brain is so compromised?

Wessel also saw her after work and then went back in the evening to hold her. She had another brady. The doctor added 2 other antibiotics to her dose, so she is now on 3 antibiotics. She had to get another drip.

If only this process was one with a constant upward curve. But its not. It's a roller coaster ride. Its a small boat in the middle of the ocean. But we know that we are not alone. Jesus is right here in the boat with us! 

Please pray with us for the pressure in her brain to subside and that there will be no further damage, and that this seemingly approaching illness will be resolved.