Memorial Service

The memorial service for Tabitha will take place this Saturday 01/10/11 at 11h00.
The venue: Afrikaans Presbyterian Church, c/o Malibongwe & Elise roads, Randburg.

Much love

Wessel & Adele

Day 52 and a half

I cried when I woke up this morning. Just a little more intense than yesterday morning when I also cried. I made breakfast and showered, crying non stop. Wessel tried to comfort me and I told him I can't stop crying. The nurse phoned and I knew Tabitha's time had come. I wept all the way to the hospital. Wessel asked me to tell him how I feel. I said I'm fine but I know the end has come. Its like the Lord has prepared me by starting to mourn. We were not anxious or afraid and I thank God that He has answered our prayers. 

The doctor said that Tabitha was not looking good, they suspected that she had a blocked artery in her lower body because her legs were pale and her upper body reddish. I just wanted to see her and kiss her as much as possible. Her oxygen settings were high at 85%. I could see she wanted to leave us for a better place. We had to discuss what to do with the doctors, who gave her a light dose of morphine so that she can go without pain. The doctor suggested that we take her off the Sipap machine to speed up the process, because it could be hours or even days. Wessel made it clear that we don't want to do anything close to euthanasia, so doing something like that we felt would be too drastic. If God wants to take her He can do it while she is still on the machine. 

She started crying uncontrollably so we tried to calm her down by touching her head firmly and tapping her bum. She always liked that. Then I picked her up and she was very calm and seemed content. The sonar lady came with the machine and they took a sonar of her tummy to see if there is a blocked artery. They found none. Wessel took photos of us and the nurse took photos of the three of us. I asked them to take the line out of her mouth where she received her feeds. I also asked them to draw the curtains so that we could have some privacy. It wasn't long when I felt and saw that her chest stopped moving. I told Wessel that she had stopped breathing. It wasn't apnea. Her breath didn't come back. I asked the nurse to take the Sipap contraption off her face so that I could kiss her and appreciate her pretty face for the last time. The monitor still picked up her heart beat for quite some time. It was very slow until it finally came to a stop. I don't know how much time had lapsed since I picked her up or how long it took for her heart to stop. I just tried to soak up the precious last moments with her. I stroked her head and kissed her and felt her feet and hands. Wessel did too. Our tears would fall on her little body, slowly turning colder. But her skin was just as soft as always. She was so peaceful. And although we were crying and heartbroken, we had peace as well. I told Wessel this is what we have asked for. That God would not prolong her suffering. That we would not have to make the decision. That it would not be dragged out. But holding your dying child in your arms is the hardest thing I've ever done. But I'm glad that I had the opportunity. I'm so glad that we could have a limited time with her, and be blessed by her short existence here on earth.

Wessel wanted to hold her little body. I took photos. When we were ready we put her back in her bed so that the nurses could take out the drips and stickers and everything else. They also bathed her and dressed her. She is wearing a beautiful pink babygrow with butterflies. 

We went downstairs and had lunch. Then we could go up and see her again for the last time, on earth that is. She looked beautiful. I picked her up, wrapped in her blanket. For the first time I could hold a 'cordless' baby and sus her, without worrying about some attachment hurting her. I held her head close to my face and stroked her hair with my cheeks, the way I always did when I kangaroo'd her. It felt just as lovely. We packed all her things and took some more time to say goodbye to her. We know she is with Jesus already, with a perfect body and happier than she could ever be here on earth. She has gone before us. And one day we will be reunited with her again. Tabitha. Grace and beauty. Our oldest daughter and greatest blessing. 

Some people will say, and have already asked the question. Why would God give you a child and then take her away again? I don't know all the answers, but the scope of the profound influence her short little life has had on people we will probably never know. She has been a blessing for so many people, especially to us, her parents. We have grown closer together during this time, closer to our friends and family, and also closer to God. Her life was not in vain.

As human beings we always try to find a happy ending to all stories. We try and fairy tale everything. But then this seems like a sad ending.  Its not the end. This life is not the end of the story. Can you also see it? She never set foot outside the hospital, and her adventures comprised of visits to theatre. Operating theatres, that is. Most of the people who loved her dearly, never got to meet her.  Only God could think to use a little girl, not even 2 months old and weighing only two and a half kg's, to teach grown ups about Him, build their characters, show them what is important in life and give them hope. I pray that you will also experience the peace that only God can give in His Son, Jesus. I pray that you will also find strength to handle your challenges in this life. And I pray that your life will also give glory to God the way that Tabitha's life did. 

I will miss you my precious daughter. I'm sure I'll cry many more mornings on waking up. I'm sure I'll spend many days in the room you never got to sleep in, missing you, longing to hold you and kiss you again. You will always be our oldest daughter and mommy and daddy are very proud of you. Enjoy sitting on Jesus' lap and playing fun games with other children in heaven, where you'll know no lack, pain or tears. We love you.

Ps. This might not be the end of this blog quite yet. I will post more thoughts if I feel like sharing them, and I might post more photos. We are planning a memorial service for Tabitha on Saturday here in Joburg somewhere. I will post the time and place tomorrow. Anybody who loved her is welcome.

Day 52

Wessel worked from home today, which helps because if something happens at the hospital he is not far away. I went in early to see how our little girl is doing. The fact that we didn't get a call from the hospital during the night was good news in itself. She seemed to be doing quite well on the Sipap machine, on 33% oxygen and 40 breaths per minute, although they did go up with the oxygen during the night to 80% at one stage. Her colour looked better than last night, and her blood gas test (indicating pH levels and hemoglobin, among others) was looking good. She received platelets at night again. Her CRP (reactive protein) levels had come down which is good, but her PCT levels (some marker for infection) had gone up to 4.12. So trying to get a good indication on whether the fungi is coming down or flaring up is difficult based on these blood tests.

The broviac line (the line going to a vein through the chest) had to come out because the doctor suspects that it can be the cause for her fungi infection. The type of fungi is some or other species of Candida. The best treatment available for it is the Albumin antibiotic, on which she's been for more than 2 weeks now. The doctors are not sure why it still flared up despite early treatment. But we'll see now if the line they took out will make a difference. They sent the tip of the line to the lab for testing.

The surgeon only came to take the line out in the afternoon. I obviously had to go outside, but it was probably one of the worst things she's had to endure in her short life. And as a mother I'm naturally very sensitive to someone hurting my child. They did give her local aesthetics, but apparently the doctor battled to get the line out, I'm not sure why. She screamed. Directly afterwards I went in again and her eyes were open, no crying. They gave her pain medication as well, but I think it took a while to kick in. She started crying uncontrollably and I could not calm her down. I called the nurse to come and help. After a while she got Tabitha to calm down. I was exhausted from all the stress.

Our evening visit was good but emotional. My heart is heavy and my tears are plentiful. I also didn't know that kissing a baby's soft cheeks could bring me so much joy. I could just put my face on her beautiful cheeks forever. And watch her cute face and appreciate her long lashes and perfectly shaped lips.

I think Wessel and I have reached a new level of suffering last night. Things that I was sure about regarding Tabitha, I'm not too sure about anymore. I know God will carry us to handle what is to come the way He has carried us up to now. But it is painful. I pray now that one of two things will happen. God must end her suffering and take her home or He must do a miracle. I'm not sure if we're strong enough for anything in between, but He knows and may His will be done. He is wiser than the doctors and more loving than any parent. I know I can trust him to do the best thing for Tabitha, and for us, and still be glorified through it. 

Psalm 23 has a whole new meaning to me now. A friend sent it to me today.

The LORD Is My Shepherd

A Psalm of David.

  
    ¹The LORD is my shepherd; I shall not want.
    ²He makes me lie down in green pastures.
He leads me beside still waters.
    ³He restores my soul.
He leads me in paths of righteousness
   for his name’s sake.

    ⁴Even though I walk through the valley of the shadow of death,
   I will fear no evil,
for you are with me;
   your rod and your staff,
   they comfort me.

    ⁵You prepare a table before me
   in the presence of my enemies;
you anoint my head with oil;
   my cup overflows.
⁶Surely goodness and mercy shall follow me
   all the days of my life,
and I shall dwell in the house of the LORD
    forever.

Day 51

We just got back from the hospital. I've been there since 2pm. I still picked up Tabitha this afternoon but after I put her down she had a big setback. She started getting apnea spells, that means she would stop breathing for short periods. But it kept happening for more than 10 minutes, then they phoned the doctor. I phoned Wessel to come immediately. In short the two doctors asked us to make a decision on how far we want to stretch Tabitha. The infection is quite severe and we looked at the MRI scan again. Previously I said it was 65% CSF and 35% brain. I was lying. We compared it to other prem babies' brains and its more like 10% brain. I am actually surprised that she is functioning as she is. Previously they thought the brain was under pressure and will decompress once the CSF is taken out with a shunt operation. But we know now that there is not a high pressure system in her head, so what you see is what you get. But I will not let them not give her a chance just because her future looks grim. Where there is life there is hope. We decided to put her back on the sipap machine, rather than the oscillator or ventilator. The doctor says if she goes back on a ventilator she'll probably never come off it again, and putting a pipe in her nose is eina. She is on 25% oxygen and the machine assists her breathing with 40 breaths per minute. We decided to not start antibiotics for incase she has a bacterial infection. We don't want to strain her body unnecessarily so we're willing to take that calculated risk. She has not had bradys since on the sipap, so that looks good, but she is still getting apnea. Yesterday I said she looked good for someone who is sick. Well since the setback she does not look good at all. She looks sick. They did an Xray of her lungs and it seems like there is something on there, could be the fungal infection. Could be that the apnea is caused by that, which is kind of good, otherwise it would mean that it is caused by a lack of brain function.

I wish I could stay at the hospital all night but I really need some sleep now so I'm gonna try and do that. She is not in my hands. She never was. She is in God's hands so I will just keep praying and trusting Him. Nothing else matters right now. PLEASE PRAY.

Wessel asked me if I have tasted her spit. He says it tastes like candy.

Day 50 – Reasons to be thankful

50 is a big number. I can't believe its been so long, and that we have been sustained by God's grace, every day for 50 consecutive days, all of which are most probably harder than all the other approximately 11 190 of my life. I think its a good day to mention reasons to be thankful. Besides the fact that Tabitha and I are alive, here they are.

1. I am thankful that I have a wonderful husband who loves and supports me and Tabitha, and who said yesterday that he will keep on loving me no matter what. ;)

2. I am thankful that I can be a mother. I know that some people want to be but struggle to find a husband or struggle to become pregnant.

3. I am thankful that we have good medical hospital cover, because Tabitha's hospital bill is probably worth more than our house by now!

4. I am thankful that we stay so close to the hospital – 2km to be exact. It means I can quickly go home to express and eat in between hospital visits, and it means we don't waste precious time in traffic each day.

5. I am thankful that we have such a good hospital so close to our home. Some other parents drive 140km from Witbank each day, others have to lodge at the hospital or close by.

6. That my body was and still is able to produce breast milk, despite the stressful circumstances. I'm just not sure when Tabitha is going to drink it all. 

7. That I don't struggle with post pregnancy weight! Then again I had Tabitha right after people started noticing that I was pregnant!

8. I am thankful that we have great support, not only from our families, but also from amazing friends, and even contacts that have become friends.

9. For every day that Tabitha's life is spared.

10. That we have peace in Jesus Christ, otherwise we would probably also be in hospital or on sedatives by now. 

I just had a poo and my daddy cleaned my bum!

Tabitha's blood results don't look great at all. Despite the platelets she received yesterday, her platelets are still only 33 today. That means that she must be quite ill. For the medically skilled – her CRP is up to 38, her potassium is low, her Hemoglobin is 8.8. Another bacterial count that was within the desired <0.5 range all along is 1.8 today. Basically all you need to know is that she is quite ill, but despite that, the doctors are surprised to find her physically looking rather healthy (referring to her colour and general well being). I think it must mean that she is very strong, but we already know that!

Her head circumference seems to be coming down slightly. We're not sure why, but the neurosurgeon explains that the build up of fluid is not necessarily at a constant rate, things can stabilise and cause the head to decrease or stay the same. We'll see what happens. 

She had some sonars done on the head and abdomen to see if there is an abscess source somewhere responsible for the fungi in her blood, and they found none. That means the fungi infection was caused by something outside the body. That is good news because if there was an abscess somewhere, they would have to remove it. So she'll just have to stay on the antibiotics until the fungi is killed. 

She had a blood transfusion today and also received more platelets. Her feeds are up to 6ml/h. She gets bradys (sudden drops in her heart rate) and desaturations (dropping O2 levels below 85) quite often. Doctors say its related to her brain function.

We really need a miracle. We pray for a miracle. We hope for a miracle. But we trust God, although its not easy.

To sacrifice for God is easier than to obey God. To obey God is easier than to trust God, because sacrifice is in our control, obedience makes sense, but trust is a different issue altogether. It is about giving over and not being in control. It is not only saying we believe in God but saying we believe God knows better than we do. Faith is easy. Trust is hard.

Don't feel that your challenge is inferior to mine. If it is something where you are not in control and where you have to learn to put all your trust in God, it is tough enough. But lets keep on encouraging each other that God knows best. Our situation could not be in better hands, than in the One who is completely sovereign, infinite in wisdom and perfect in love.

Day 49 – WHY?

Day 49

I'm sure the number one question that people ask when going through hard times in their life is WHY? Why God, why?

But God never explains. He doesn't have to, He is God. God never explained to Job why he had to go through his terrible suffering. I don't think Job's suffering was for the purpose of a chess game between God and Satan. In Job's specific instance, God allowed Satan to put Job through hell, but it seems like the end purpose of God's plan was not to say 'See, I won!'. The story is concluded with a conversation between God and Job in which Job says, 'My ears had heard of you but now my eyes have seen you'. Through everything that happened, Job has come into a deeper relationship with God. God never told Job in the beginning 'If you pass this test I will reward you with double of everything'. Job decided to keep trusting God even though the world and even God seemed to be against him. And as the readers of the story we can see that God was there all along and that he had a purpose in mind for Job's own good, even though He didn't cause the things to happen, but He allowed it. We also see that the things didn't happen because Job was sinful and had to be punished. I also know that God doesn't bring or allow suffering to punish people. Jesus already took all our punishment upon Himself. In Jesus we are free from condemnation.

I'm not saying that Job's story is a blueprint of all the trails we may face. We don't know what the reasons or purpose is for our specific trials. But we can learn more about God's character and the way He works. Some people may say that Job's trials were too much and that no reward can make up for his losses. But God knows exactly what circumstances, both good and bad, are necessary to produce a certain result in our lives. We cannot always see what good can come out of a bad situation while in it, and there are no guarantees that we will see or understand it afterwards, but His ways are perfect, and incomprehensible.

I am sure it is ok to sometimes wonder why? Or to wonder what good a certain situation can possibly produce. But I have decided a long time ago that I will never ask God WHY in a demanding or accusatory tone. It just feels to me like that would be almost blasphemous. Like I put myself in a position where I think that I deserve to know or that I am questioning God's motives as if He can make a mistake or as if He is not entirely good. So now that I am facing possibly the greatest trial of my life, I will not change my decision. God is God and I am just me. Besides, I have never heard of anybody getting an answer to that question. If He does answer it, we will probably not even understand.

"For my thoughts are not your thoughts,
neither are your ways my ways"
declares the Lord.
"As the heavens are higher than the earth,
so are my ways higher than your ways
and my thoughts than your thoughts."
(Isaiah 55:8-9)

The way I see it God does not work out a plan the way we would work out a plan. If one of our avenues in a certain plan would fail, we can try something else, but then the end result might not be the same. Or we might run out of options and then we have to compromise or not finish the plan at all. I believe God's ways are much higher than our ways in that He can have a plan, but if a certain person in the plan doesn't obey Him, He will use someone else or an entirely different means. His plans are not dependent on people. Also if we ask something in prayer He may change things along the way, but the end purpose of His plan will prevail. Nothing that happens in between will throw him out. I know our brains can't figure it out, but then again He made our brains. He is not like us, so we shouldn't try so hard to be on His level. Its just silly.

People often answer the why's with 'because we live in a sinful and imperfect world, therefore bad things happen'. I totally agree with that. But I don't think God made the world, and then man sinned, and then he turned His back on us and said 'now you sinned, so deal with it.' That sounds like a bit of a deist view to me. I believe God was right there when Tabitha was born. He was there all along and He is still there. Yes imperfect births are inevitable in a sinful world where things are often imperfect, but God is still in control of the universe. He knows what's going to happen even before it happens. And He never leaves or forsakes us. That is why I can trust Him in this situation, because I know He allowed it to happen so He knows what the purpose of it all is and I know it will be for our good and His glory. We don't have to understand it.

 

I can also frown!

Tabitha is seven weeks old today. And becoming more beautiful to me every day. I just can't get enough of her, even though she can't do much. I am so happy to be able to spend time with her. I can hold her on my chest the whole day. And when she comes home, I will, literally. They say kangaroo care is so good for babies, but especially preemies. They grow faster and their heart rates and breathing are better regulated. My two cousins manufacture a kangaroo baby carrier, proudly South African, so I got one as a gift (thanks Alta!) and can't wait to use it. (Check out the website www.tigo.co.za.) It's just great. At the moment kangaroo care is restricted to a chair and you need a degree to manage all the pipes and tubes and lines connected to her. They may not pull or knot or come loose or hurt her. Can't wait for her to be 'cordless'!

The fungitel count of the other day seems to have progressed to a fungal growth somewhere according to new blood test results. So guess what. Yes! The operation will have to be postponed again! Just as well that it was not done on Saturday. The fungi can infect the shunt and damage it, but it can also infect her brain and cause more serious complications. I am done stressing about it. The good thing is her head has not grown in the last few days, in fact it seems to have come down from 36cm to 35.5cm today. So we'll just have to wait for her to get better before they can think of doing the operation. The ventricle tap is still not an option, thankfully. The neurosurgeon said that she is one very sick baby when he saw her today. I think he is referring to the fact that there are more than one complication going on, making treatment difficult, as with the shunt operation. And he is also referring to the state of her brain. Medically speaking the future does not look bright for her. Why God, why? Tempting. But God has a plan.

Fungi is apparently not an easy thing to get rid of. She has been on the antifungal antibiotics for 12 days already. But at least now that its growing they can determine which fungi it is. They will do sonars tomorrow to try and see where it is growing. Her platelets were down to a ridiculous 9 today. Like I said before, it should be above 150. They gave her some platelets, and tomorrow she'll have to get some blood again (this time aunty Minnette was kind enough to donate!) because her hemoglobin is down from 10.4 yesterday to 8.6 today. It should be above 10. The conclusion is that the low platelets is definitely because of the fungal infection.

She was also crying quite a bit today. Normally she hardly ever cries, except when you disturb her. It was upsetting because obviously something is bothering her. She must be either uncomfortable or in pain. When the nurse finally took out the one drip in her foot that was not working so well anymore, she stopped crying. It must have hurt her. Poor little baby. When she cries often I don't want to go home to eat because she needs someone there that cares enough to comfort her whenever she cries.  The nurses are good, but they're not her mother.

I just want to thank everybody again that is following this blog and showing so much interest in Tabitha's life, supporting us with emails, sms's, phonecalls, Facebook messages, etc. We are so thankful and blessed by it, (even though I don't always answer all of them). Just know that we really appreciate it so very very much. And please remember to keep on praying for Tabitha's health and healing! Lots of love.

Day 48

People, and even bunnies, like looking at me.

I've wanted kids all my life, I think. But Wessel and I only really decided that we were 'ready' for kids after settling into our marriage and doing a few final 'fun' things like going overseas. Although it seems like the next obvious thing to do after being married for 2 somewhat years, I knew it is a huge responsibility and not to be taken up lightly. But you also have to ask yourself why you want kids. I think if we have to be honest, all of us have some selfish or indirectly selfish reason for wanting or having kids. I've read that some mothers at crisis pregnancy centres say that they wanted to get pregnant to 'create' someone that loves them. Maybe others feel pressure to 'carry on the family name' or to get nice 'perfect family' pictures taken and post them on facebook, or just because babies are so cute. I think in the old days some people had kids to create a free labour force on their farms or businesses.

But when you realise that parenting is not about us but rather about God, as I recently did, the trials become more bearable. When God blesses us with a child, he entrusts one of His sons or daughters to us, to raise as our own on this earth. They are our children, but before they are our children they are God's children. That is why it is such a huge responsibility, because we are not just raising a body or a mind, but a soul. Raising your children with the fear of God and teaching them the gospel is success in God's eyes, I believe. I know its also nice to have all the other things, i.e. children who are clever and well educated and self-sufficient and well mannered and well liked and good at this and that, etc. But if you are serious about what pleases God you will raise your children to serve Him, before all the other things.

I know God has given Tabitha to us for a purpose. The trails along the way might be tough, so tough that we don't know if we can handle it much longer. But then again its not about us. Its not about our perfect family picture that we imagined. We are merely instruments for God to fulfil a certain purpose. Tabitha is His daughter before she is our daugther. Therefore it is our duty to care for her, love her and raise her to the best of our ability, by Gods grace and strength that He gives. Then we have been successful as parents. So that is what Wessel and I are going to do. 

The reason I talk like this is because yesterday the neurologist and I spoke, and she asked something in the line of 'What are we as parents prepared to live with'. I was not sure how someone is supposed to answer that. The pediatrician also asked us something similar a few weeks ago when we discussed the MRI scan results. So I told her that I understand that it would be selfish to keep a child on a machine forever just because you can't 'let go' and in the process you actually make the child suffer. But if the child can live without life support, but is severely impaired, how can you decide whether the child deserves to live or not? I told her we will take Tabitha as she is. Its not for us to decide if she deserves a place in the sun. God made her and she will be exactly as He intended. And we are her parents so we will take care of her. So the doctor said that we will be surprised to know what they see sometimes. Some parents of impaired kids will just leave the child at the hospital and tell them to find a home for them. I was shocked. But I guess it is inevitable in a society where we kill healthy kids that are still in the womb, also for selfish reasons. 

Today is Saturday, Heritage Day, National braai day. But for us it was not much different from our usual daily routine. Tabitha is doing quite well today. Except for a few bradys. They still took two final x-rays of the abdomen this morning, tracing the 'contrast' right into the rectum. It moved quite slowly, so she has not eliminated it yet therefore her tummy was still a bit distended. The good news is that there are no obstructions in her colon. They have therefore not been able to find any obvious cause for the falling platelets, which is down to 32 today. The doctor said it could be that its delaying to pick up after the fungal infection. She gave her something to get the bowel movements to speed up so that we could start feeds again. She is on 2ml/h continuous tube feeds again. 

Both Wessel and I were able to hold her for extented periods again and do all her nappy changing and facial hygiene. Yes, daddy also does dirty diapers. This daddy picks all the fun activities, he was also the first to have his daughter bring up milk on him on a previous occasion, much to the nurses' entertainment. 

We are still trusting God to do a miracle for our little Tabitha. With Him, nothing is impossible. We get scared sometimes when we are faced with her serious prognosis, but who knows what His plans are for her? We as her parents will be waiting patiently to see how it unfolds in front of us. God is good. 

But we must keep on praying!

1 Thes 5:16-18

Always be joyful. Never stop praying. Be thankful in all circumstances, for this is God's will for you who belong to Christ Jesus.

Day 47

Tabitha was nauseous again during the night, probably due to the Diamox (diuretic drug) prescribed to try and control the CSF buildup in the brain. So they stopped the diuretics, as well as two of the antibiotics. Feeding also stopped, just for the day. Her platelets dropped to as low as 38, but they still are unable to determine what the cause can be. There is also no infection in the CSF fluid extracted yesterday. 

The doctor told me she was quite surprised to find that the CSF was not under high pressure when she did the little lumber punch yesterday. She spoke to the neurosurgeon about it, and he said that he found the same lack of pressure surprising when he opened up her head during the first operation. Hydrocephalus is normally associated with high pressure. They concluded that the only way to explain that is that the actual problem is not a blockage in the ventricles, but the lack of ability of the cells to absorb the CSF. They trace that back to a brain cortex problem, and reminded me again how much damage the brain suffered. This is not a light damage, its leaning more towards severe damage. So severe that the doctor asked me if Wessel and I have talked about what to do should she decide to suddenly stop breathing. Her bradys are also probably because of her lack of brain function. And apparently anything can still happen. Should she decide to stop breathing, they want to know if they should put her back on a machine or just let her be. Even if she does survive, we don't know if she'll be able to see, hear, walk, or have any other normal bodily functions. The type of stuff most people take for granted. I did not handle that news very well. 

Wessel rushed to hospital, and my brother in law and parents in law also arrived at hospital shortly after. Not because of the news but because they came to visit. My parents in law are here for the weekend. It was good to see them. All I wanted to do was hold my little girl and tell her how much I love her. There was a time when we didn't know if we'll ever bring her home, but I thought we were past that point. Now all of a sudden I am told that it is still a possibility. Its not that the doctors changed their mind. Its just that they see things as time goes on and then come to these conclusions. 

It is so hard if you don't know what to prepare yourself for. The only thing I am sure of is that no matter what happens to Tabitha or how she turns out to be, we are not alone because God will give us the strength to handle it. That is our only comfort. There really is nothing more to say. 

 
Then Jesus said, "Come to me, all of you who are weary and carry heavy burdens, and I will give you rest."
Matthew 11:28 

My parents in law say that Tabitha looks much better in real life than on the pictures. I must say I agree, our pictures often make her look too red or too dark or too shiny or something. They also say that she looks much bigger than when they first saw her during the first week. She already weighs 2.4kgs! She's picked up more than a kilo since birth. 

Beautiful moment with my daughter

The doctor gave her 'contrast' that will increase definition of the intestines on the x-rays. She wanted to just make sure there is no obstruction or anything unwell in the digestive system. She had an x-ray taken every 30 minutes from 11h00 to 14h00, so I could not pick her up. But at 14h00 I held her for three straight hours. She was not dressed today, because they put the heater on her and then she must be exposed so that they can monitor her body heat. So her little naked body on my chest was such an amazing feeling. I just looked at her pretty face and touched her little back and kissed her head, her nose, her cheeks, her neck, even her eyes. I just want to spend as much time with her as I can. Like I said before, she looks like a perfectly normal baby. She does everything a newborn would do. But I'm not someone to deny reality. That's not gonna change anything. If she's going to have a decent quality of life, we will need a miracle. 

I know so many people are praying, and we're praying. So I know that if it's God's will he will listen to our prayers and work it into His plan as only He can in His wisdom and sovereignty.  He is a good and loving father, who can see everything in perspective to eternity. But He will not give us something if it is not for our good. Will you give your child a car when he is eight years old just because he thinks he can drive and asks nicely? Off course not. You have the wisdom to know that things are gonna go horribly wrong and harm your child. It would be stupid and arrogant to think that we are 'better' than God. God is perfect, we're not.

I quote 2 Corinthians 12:8 from Pauls personal experience:

   ⁸ Three different times I begged the Lord to take it away. ⁹ Each time he said, “My grace is all you need. My power works best in weakness.” So now I am glad to boast about my weaknesses, so that the power of Christ can work through me. ¹⁰ That’s why I take pleasure in my weaknesses, and in the insults, hardships, persecutions, and troubles that I suffer for Christ. For when I am weak, then I am strong.

Day 46 and counting

I received the Your Pregnancy magazine in the post from Discovery. They still think I'm pregnant. I noticed on the cover an article on preemies. They say parents of premature babies may have questions like 'Will my baby die?'. But they shouldn't worry because that is normal. Great. Who needs a shrink when you can get advice like that for free?

I think every day until the operation will be stressful now, because I can see that the doctors worry, and the medication that she gets to control the fluid makes her sick and the pressure building up is obviously causing discomfort and who knows what other bodily functions are affected by it. Sitting and waiting is so hard. All of this is hard I'm not gonna lie. I want to take a break from it but then I realise that no matter what I do I cannot take a break from it. I'm sure that's true for all mothers, and parents in general. No matter what you do or where you are you will never be free from worrying about your children. So I'm getting used to my new life although the introduction may be a bit extreme. 

Platelets are still quite low, but I went to see the doctor about it and they can't seem to find a valid cause for the falling platelets. She doesn't seem to have any new illness or infection. The only thing they haven't checked is the CSF fluid itself for a possible infection. So after our chat the doctor went to extract some CSF from the spine. It seemed all clear which is good and it was sent to the lab for tests. Most of the day she seemed to be doing fine until the afternoon when they struggled to keep her temperature up and then she vomited twice. After that she was ok again. They took an x-ray of the tummy but it seemed fine. I don't know what's happening, and nobody else seems to know either. Could be the diuretic medication making her nauseous. 

Some people think Christians should not have to suffer, that all is well when you find Jesus, and if not you don't have enough faith, and the sufferee feels guilty. Suffering AND guilt, that's just terrible. I don't want to go into this because I'm tired and want to go to bed early tonight, but shortly all I want to say is that Jesus said  

 'In this world you will have trouble.' (John 16:33) 

And then Paul says in Romans 5 that  'We also rejoice in our sufferings, because we know that suffering produces perseverance; perseverance character, and character hope. And hope does not disappoint us.' 

I can't say yet that I rejoice in my suffering. I might endure it at this stage, I'm new at this. But I want to tell other people also facing pain and suffering to know that the world is full of suffering, but its not in vain. I know we're not the only ones, neither is our pain more painful than what other people may face. I think of people struggling with cancer, chronic physical pain, parents who have lost a child, other parents with sick babies at the NICU and people like my brother and sister in law who has a 7 year old daughter with cerebral palsy. If happiness in life was our ultimate and most important goal and we manage to be successful in attaining it, we might lack character and never get to a point of having hope in Jesus. And what gain is there if you have everything but you loose your soul? I think that is where the rejoicing part comes in.

If this doesn't encourage anybody else, its ok, its encouraging me!

Wearing a spring outfit today.

Day 45

This morning was one of those again... first thing when I walked into the NICU I was informed that the shunt operation was postponed again, to next Tuesday instead of Saturday. The unit manager told me that the neurosurgeon was there to see her and he feels that she is too unstable or something or lots of talk but nothing sounded convincing. [If you don't like the technical details you can skip the next paragraph].

None of it made sense because she is pretty stable, except for getting brady's but that is probably because of the discomfort of the growing pressure in her head. If they refer to the infections, it doesn't make sense that they have not ordered fungal tests again since Saturday, and the results showed that her fungal count has decreased from 500 to 160 in 4 days. They need it to be below 100 for the operation, so surely from last Saturday to this coming Saturday the count will go down with another 60 to be below 100, given that she is still on antibiotics. Her platelets also did go down yesterday. The first blood tests came back in the morning and it was 40. (It should be above 150). But the pediatrician said it must be a mistake, so they did blood tests again and it came back as 89. But today they didn't even order blood tests. If the platelets are a concern they need to transfuse, that's always been the solution in the past. I understand that platelets going down is an indication that somewhere the body is sick, so it is concerning but whatever it is it should be fine by Saturday. I'm not a doctor, I know, but I can apply logic!

So I tried to see the pediatrician, but she is not there on Wednesdays (she did do rounds in the morning so she did see Tabitha). Then I tried to go and see the neurosurgeon. I had questions that needed to be answered! I waited in his rooms for almost 2 hours (they had to fit me in between patients, but he was quite busy). To my disappointment I missed out on Tabitha's 11h00 feeding session when I was planning to change her nappy and spend some kangaroo'ing time together. When I finally got to see him I told him that I'm very concerned because the operation is in actual fact not postponed by 3 days but by 3 weeks from the date initially planned (which was day 30). I heard them speaking before about trying to do the operation, the sooner the better. So it turns out the actual reason that the operation is being postponed now is that the anaesthetist and the pediatric nurse can't be there on Saturday. The doctor said that he doesn't want to just get anybody else because these people are brilliant. It would just increase the risk factors, and considering that versus postponing the operation 3 more days, he is more comfortable with postponing it. Fair enough. I know the anaesthetist is key in the success of the operation. I also don't want to take unnecessary chances. Its just a pity that we have to postpone because of outside factors this time. I even said I'll go and speak to the anaesthetist myself, but apparently he is out of town until the weekend. He said if we persist they can do the operation on Saturday, but I think it's unwise to take that responsibility. If something goes wrong, fingers will be pointed to us, the 'crazy parents who goes against the advice of the doctors'.

When I saw the neurologist on doing her rounds in the afternoon, she was quite concerned about the size of Tabitha's head. She was away for a week, so she hasn't seen her in a while. She said waiting until Saturday is a concern, but she'll prescribe a diuretic again to try and stabilize the growth rate. Then I told her that it has been postponed till next Tuesday now. Needless to say, her reaction did not comfort me. 

Great. I do understand that babies' heads are flexi so the pressure doesn't build up as much as it would in an adult's head, making timing a little less critical. But her head has grown by 6cm since the first time they wanted to operate. And all the mixed messages... I feel stuck in the middle and there is nothing I can do! But I know I shouldn't be anxious. God is still in control.

Yes, I believe God is sovereign. And yes, I believe that as Christians we need to pray.  These are not conflicting thoughts, if we don't believe that God is sovereign, our prayers will be more like wishful thinking. If God is God He can cause things to happen or not happen in a certain way. But I also believe that we need to be prudent, i.e. you can't not study for an exam and then fail and then say it was all in God's plan for it to happen that way. We need to do what we can do, use the means given by God to do what is in our scope. God will work through that as well to accomplish His purpose. With this in mind, I knew I did what I could so I shouldn't be anxious. God, in His infinite wisdom and perfect love, will make all things work together for good. We really can and should trust Him. Its a bad day for you when you think you can judge God if things don't go your way, according to your limited knowledge and wisdom. We don't see clearly. 

Back to Tabitha – I tried to make up for lost time by going back again in the evening to hold her. Wessel had to work anyway. He went by to see her quickly after work at 6pm. Did I mention that she's on 10ml of milk now and that she made a big poo at 5pm? First one after she started feeds again yesterday. That's always a good sign, she is tolerating her feeds and managing her waste. AND there was no blood! So the NEC is gone.

They also removed the plasters that covered the operation wounds today. The one on her head and the one on her tummy. From a nursing perspective I'll say that the stitches look neat and the wounds are healthy. From a mother's perspective I'll say, 'It looks terrible, what on earth did you do with my child!!??!' The wounds are pretty big but I'll stay calm. It will heal, but only after they open it up again for the operation on Tuesday. What a strong and brave little girl we've got.

Thank you Lord for another day in Tabitha's life. Thank you that we can put her future in your hands. We also leave the details of the operation in Your hands. Heal her body and let her come home soon.

Phil 4:6
Do not be anxious about anything, but in everything, by prayer and petition,with thanksgiving, present your requests to God.

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! 

Day 43 & Explain her brain (PART II)

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!

Day 42 & Explain her brain (PART I)

Hi, my name is Tabitha and I am 6 weeks old today!

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. 

To be continued...

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! 

Day 41

This morning Wessel and I went to gym. Its the first time that I'm back at gym since Tabitha's birth. Tomorrow is six weeks and I thought it would do me good. We also got to watch some of the rugby while gymming, so that's two for the price of one. We had breakfast there before going to hospital. 

My one month parking ticket at hospital had expired yesterday, so I got another one today. I sure hope this is the last time I'll need one!

Tabitha seems to have improved on the bacterial infection based on bacteria markers from the latest blood test results. She still doesn't like to be fiddled with, but the doctor encouraged us to do more kangerooing today (holding baby skin to skin on your chest). The neurosurgeon is adamant to do the shunt op early on Tuesday, as her head is growing by the day. He ordered a CT scan of the abdomen on Monday to make sure the NEC (bacterial infection) is cleared up. The pediatric surgeon came by in the afternoon (he will also be present during the operation) and informed me that some further blood tests from this last Tuesday came back this morning, showing that her markers for a fungal infection is up to over 500, and it should be less than 60. He ordered another test on Monday morning, because although she is on medication for that, there is no guarantee that it will get rid of the fungi that quickly, and its not a good idea to operate while there is too much fungi present in her blood. Apparently they thrive on shunts, which could cause problems. They don't know what kind of fungi, but he says some fungi can stick around for more than 6 weeks. It is just such a juggling game. If you do the one thing to solve a problem, another thing comes up that basically makes solving the problem impossible. And there aren't many other options so somewhere you're going to have to take an unwanted risk. I was a bit upset that no one thought to tell us the results from the fungal infection this morning. Obviously every little bit of information is important to us as parents, it can get quite frustrating to get all the relevant information every day.

Her haemoglobin (red blood cell count) was low again today. I think I mentioned before that premies can't produce adequate haemoglobin, so they have to get supplementary blood to correct it. Her Aunt, Annelize, donated a pint of blood especially for occasions like this. They will also use the last 2 batches of her blood for the upcoming operation, if all goes according to plan.

The best part of the day was holding her again, for long periods, twice. She was crying before I picked her up, but when she is on my she calms down and sleeps like a baby. That sure does make a mother feel good! Her ears are starting to produce cartilage now. Her ears used to be just skin, shaped in the form of an ear. So when she would lie on the one ear, sometimes when you turn her head, that ear is folded double and sticks, so that it stays folded up until you reshape it. It reminds me of a little puppy!

Her nappies are all just wet. I'm sure some parents would like that! It is because she is not getting any milk. The TPN (i.e. the intravenous liquid nutrients) are so formulated that no waste products are formed. Everything that she gets is absorbed into the cells. I must say for someone who should be quite hungry she is behaving rather well. I can't wait for them to start her feeds again.

I spent most of the afternoon at hospital while Wessel ran some errands at home, so tonight he went to hospital again, while I get to write my blog before midnight and take a break from all the beeping in the NICU. I tell you those machines make me crazy. Every time a beep goes off you stress that its your child having a brady (sudden drop in heart rate), desaturating or just having a too low heartbeat. 

This whole experience is so hectic its actually ridiculous if you think about it. But just like there are seasons in nature, this season of our lives will also pass. Some people say that a rainy summer will follow a very cold winter. This is our winter. We can't wait to see what beauty our summer will produce! I am just so thankful, once again, that we are not alone in this. This is not merely random fate or some sin that we are being punished for. As God controls the wind and the rain, and cares for the mossies and the lilies of the field, so He is in control of this situation and we are not afraid, because our tomorrow is in His loving and caring hands. And our strength is in Him.

God is our refuge and strength, a very present help in trouble. Therefore we will not fear, even though the mountains be carried into the midst of the sea. (Ps 46:1-2)

Have you never heard?
Have you never understood?
The LORD is the everlasting God,
the Creator of all the earth.
He never grows weak or weary.
No one can measure the depths of his understanding.
He gives power to the weak
and strength to the powerless.
Even youths will become weak and tired, and young men will fall in
exhaustion.
But those who trust in the LORD will find new strength.
They will soar high on wings like eagles.
They will run and not grow weary.They will walk and not faint. (Is 40:28-31)

Thank you to everyone following our story and praying for us. Lets all pray that the coasts will be clear so that the shunt operation can go ahead as scheduled for Tuesday. Pray for the doctors that have to make tough decisions, and for everyone working on Tabitha. Also pray that she will be relieved of the pain and discomfort that she has to go through. And pray that God will heal her body so that she can come home. If you are friends of our families, please remember that they also need support as this is also a very difficult time for them, although they might be far away. God bless.