Wednesday 7 September 2011

Day 30

Today is day 30 since we were blessed with a baby girl named Tabitha. She is now 30 weeks (time in my womb) and 30 days (time in the NICU) old. I thought this is the perfect day to start a blog, just about her. And about our journey as her parents. 

She has been one brave little girl today. I'll try and elaborate on some details about the first 30 days of her life later. This morning Wessel and I went to the hospital at 7h15 because she was due for her VP Shunt operation at 8h00. But one thing that had to happen before the operation was that she had to be taken off the Oscillator ventilator and be successfully put onto the conventional ventilator. The settings on the Oscillator were still quite high yesterday, so we really prayed that she could graduate successfully because there is no way that they can do the operation if she is on the Oscillator (it vibrates too much) or unstable on the conventional ventilator. They only took her off this morning at 6h45, and when we arrived they were just doing some blood gas readings to see how she was coping. All seemed good, we were so relieved! They could send her for the operation. 

The anaesthetist, Dr Schoonbee, were not prepared to take her to theatre just a little over an hour after being taken off the oscillator. Dr Marus, the neurosurgeon, explained to us all the risks of the procedure yesterday. If she should not be stable on the operating table, i.e. if halfway through the operation her oxygen levels should drop or she should stop breathing or something, they cannot stop halfway and we might loose her. The procedure could take 2-3 hours in total. So Dr Schoonbee said she can be taken to theatre at 10h00 if she remains stable on the ventilator.

She was so good. I spent some time with her and held her hand and sang lullaby's. They haven't fed her since 2am so no doubt she was missing her 3 hourly 30ml of breast milk, but she only cried occasionally, and would stop again when I start singing. Her cries are silent ones, because the tube in her nose is going through her vocal cords. But you can see very well when she cries. That mouth and the wiggling little tongue! And the red face of course. Nurse Ade was kind enough to let me pick her up with all the pipes and lines attached, the first time I could feel her little body against mine. What a special moment. She cried when I picked her up because she doesn't like it when you disturb her or touch her head, but she calmed down when held against my chest. Wessel cried as he took pictures. Ade also took some family pictures of the three of us. I will never forget it.

10am became 11am and still no phone call from Dr Schoonbee. He came to fetch her just after 11h00. She was being bagged all the way to theatre with a oxygen pump-and-bag. This is a far trip for Tabitha, the longest trip she's ever taken was to the Radiology department for her MRI scan last week, and that was on the ground floor. The theatre is on level -1. All the lifts were going up, not helping the nerves. I gave her a kiss on the forehead just before she went through the big doors.

I got a sms from Dr Schoonbee to say that she will be back at the NICU at 12h30. I thought that was a bit quick but I thought if she didn't make it they probably won't take her back to the NICU... and that's the most important thing. My mom and I rushed back to the hospital after expressing and I let Wessel know, who was having lunch at the hospital with my dad. Dr Schoonbee explained to us that the operation was not exactly a success. They opened up her head, but when they cut open her stomach, where the shunt cord needs to be attached to drain the spinal fluid, there were some unknown white fluid there that looked like puss or something. They couldn't possibly allow this fluid to get into contact with her brain as that can be fatal. So they took a specimen of the fluid so that it can be tested. Dr Marus was able to temporarily drain some fluid (CSF) from the ventricles by inserting a needle. He said that the brain was not under so much pressure as they would normally expect from a shunt patient. That means that some of the fluid must have been absorbed or drained one way or another. Maybe the ventricles are only partly blocked, or maybe the diareutic drug that she's been given is responsible for some relief. So now we'll just have to wait and see what the specimen results are. They suspected it to be NEC (Necrotizing enterocolitis) which is a serious abdominal bacteria in premies, but they continuously test her for bacterial infections and no symptoms have been picked up.
An unexpected curve ball, but once again we'll just have to wait and see before running to any conclusions. Fact is she didn't get the shunt and she'll probably have to go back for surgery once they have sorted out the tummy thing, whatever it is. 

I hoped that they could at least keep her on the conventional ventilator after the operation, but her blood gas dipped again (CO2 went up and pH levels went down quite significantly) so they had to put her back on the big old oscillator. I'm so tired of that machine now, we've been waiting for her to get off it from the first week! But as Wessel said, it is possibly just due to the ramifications of the operation that the levels dropped, and not due to the condition of her lungs. I do believe she is very close to being taken off it for good. 

It broke my heart to think of the two cuts in her little body. The worst operation I have ever had in my life (30 years, I thought I should mention as it fits in with the theme ;) ) was the cesarian section 4 weeks ago, and I hated it. The pain and terrible out of control feeling afterwards is nothing but awful, I can not fathom what this must feel like to her. 

Her blood gas readings were back to normal a few hours after the operation and she was put on antibiotics to treat the possible bacteria in her tummy. I pray that all the drugs she has to get will do more good than harm, as we all know - all medication has some side effect and her body is soooo tiny.

Even though it was another day where we were faced with bad news, I do have some feeling that there is a good reason for not being able to insert the shunt. But we'll see in good time what it was. I know now more than ever in my life before that God has our lives in His big, loving hands and nothing slips his mind. He is totally sovereign, good and trustworthy. So I will keep on trusting Him.  We might understand the bigger picture later, by God's grace.

4 comments:

  1. O wow dis amazing. Jy skryf mooi sus dit voel of ek daar was saam met julle. Dis die mooiste foto en ek is super bly jyt die blog begin. Nou kan ons in detail als met jou deel.... LOVE YOU

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  2. Ons bid vir julle en julle hele familie. Sterkte.

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  3. Hi Adele,

    Firstly, I am deeply sorry for your loss. Tabitha is beautiful and the time you had with her is precious and life changing.

    I read your article in the YOU mag tonight while lying in bed with my oldest son jabbering in my ear.

    I had my daughter at Sunninghill in December 2010 and also spent time in those same chairs in the NICU. It was a surreal time for us and I remember crying in my Paed's arms as she told me my daughter needed to see a Cardiologist asap. All turned out ok for us and Krysten (her name means Follower of Christ) is now fit fat and full of energy.

    You article reduced me to tears as I could feel your pain and your relief as your daughter passed into to the arms of Jesus. It's an absolute miracle that He took her as you had requested, thank you Lord.

    After finishing the article I went and kissed my 3 children in their beds with tears pouring down my cheeks. You have reminded me tonight of the true gifts I have.

    Thank you Adele. I pray that your new year will bring restoration, healing and joy into your home. You can email me on tammcmaster@gmail.com if you'd like to keep in touch.

    God bless, love Tamara

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  4. Leon, Desire Kruger1 January 2012 at 18:22

    Wessel en Adele Kruger.

    My hart gaan uit na julle. Ons dra julle beslis in ons gebede op na Jesus. Ons seuntjie is 18 Maart 2008 op 27 weke gebore. Hy is dus 13 weke te vroeg gebore. My voete het ook begin swel en ek het ongelooflike hoe bloeddruk gehad. Ek is in MediClinic Vereeniging opgeneem met "Pregnancy Hipertention" waar hulle n keisersnee moes toe dien. Ons seun Liam het 910g geweeg. Hy het afgeval tot 830g. Dit was vreeslik en niemand sal verstaan hoe te voel en hoeveel emosies gaan deur jou as ouer as jy nie self deur so situasie is nie.Vandag is hy 3jaar, 9maande en 14 dae oud. Met die Here aan ons kant het alles reg en goed ontwikkel en het hy niks oorgehou nie. Prys die Here. Die Here het 'n doel met alles en almal.Wees gerus God het Tabitha by Hom nodig. Sterkte vir julle. God bring nie iets op mens se pad as Hy weet jy kan dit nie hanteer nie. Wessel en Adele julle was gekies vir God en dit maak julle gesin super spesiaal! Tonne liefde en gebede. Leon, Desire en Liam Kruger.

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