A Catch Up!

The last two weeks have been so crazy, the wonderful news is that we have sold our house. We are just waiting for contracts to be exchanged and this will happen this week. Selling and buying a house is huge. We negotiated for 2 days selling our house and about a day for the house we plan to buy. I really can't wait, we all can't wait. Our new house is low set and we can go outside with ease and going for a walk and playing the garden can be part of our daily routine instead of just rare activities. I am trying not to get too excited but too late, I am. Of course challenges will still be present in our lives but it will be made easier to bare. Faith's bedroom is know where near the kitchen and main living areas so we can let her sleep or rest happily without her being curious about what is going on not a few steps away from us. It is amazing what we grow grateful for, for example, the laundry is just outside the back door and Faith can come with me and help me and part of normal household activities. As with our current high set house it isn't possible for me to take Faith to the laundry I usually wash at night or when she is asleep. I tried the other day and she got excited and started poking the washing, I just couldn't manage it. Her face filled with disappointment just over going downstairs. We will miss our neighbors so much, the older couple on one side have been so wonderful to us. They are part of our lives here and I plan to include them as much as possible from our new house. After all, it isn't that far away.

Purple elephant that vibrates

So apart from pest and building inspections, signing contracts, all those fun activities with buying and selling a house Faith has been progressing really well. We have been continuing with learning makaton sign, oral alerting program and oral stimulation program. The speech pathologist made a progress sheet so we can record daily patterns, how well certain things are received and so we can make changes as we go. We have this little purple elephant that vibrates and we work up from her foot to her face to get her use to different sensations. It is supposed to help wake up muscles. Sometimes she likes it sometimes she doesn't. Our aim is to remain consistent. Just like with brushing Faith's teeth. My husband brushes his while we help Faith with hers. She gets quite excited. We are also teaching her to spit and Faith thinks it is so fascinating. I do find it a challenge to include it all in our day. I just have to keep reminding myself this effort now will help Faith in the long term. She is doing so well with it. Her new word is home and when we come into our street she says home. It is so cute and wonderful to hear and know she is understanding more.

Stepping stone clouds

Yesterday, the sun was shining and the breeze a little icy but all three of us were home so we got out the teddy bear picnic rug placed it under a tree and sat back and enjoyed the warm sun on our pale skin looking up at blue skin with stepping stone clouds. I felt my comfort level rising and just being outside, with Faith looking up into the palm trees watching the movement of the breeze through the trees, she was happy. I just want her to be happy and the simplicity of being outside made her happy. We all lay and sat out there for quite a while and it was such pleasure. 

It is nice in a way to deal with 'normal' toddler things, Faith is teething, and oh, it is not nice. Her little cheeks are read, she is drooling, the hands are in her mouth. If only she would eat and give those gums a helping chew but not as yet. A couple of nights ago from around 2am she just couldn't sleep, nothing would help, she just whined and was sad. What a long night. But isn't it a relief that it is teething and not something sinister. As it is always there as the first thought, is it a shunt malfunction or is it a UTI? In this case it is not, yay! 

A Fight for Oxgyen and a 1st Birthday!

The sun is shining which is a rare thing as it always seems to be raining at he moment. It is so nice to be home. Faith seems better within herself with the oxygen so that is a good thing. She doesn't pull at the nasal prongs but rubs her nose a lot. So her nose doesn't dry out from the oxygen we spray saline up there a couple of times a day. I think this annoys her more than the prongs. Faith's oxygen concentrator arrived a few days after we got home and we now have a long cord so we can wander around the house. The concentrator has a sound like a space ship and takes a little getting used too. We also found out that we were allowed two small portable oxygen cylinders a month. So that is a help. Don't want to be stuck at home too much. As usual we are home a short time and Faith's vomiting and sickness starts again, the sweats and neuropathic pain. We seem to get a glimpse of Faith being well and she gets sick again but at least now we get a week here and there. Hopefully soon it will be more good days than bad.

We received a phone call from the Brisbane hospital informing us that our application for oxygen with the NSW government has been rejected and that the company that supplies the oxygen could call and ask to collect it. She said that we shouldn't give it back, the local hospital was going to have to cover the cost until this is sorted out. We received a letter saying that Faith doesn't meet the criteria for oxygen. The letter didn't state the exact reason why but apparently it is to do with the Arnold Chiari ii malformation not being recognized. The NSW government department apparently thinks that if the Arnold Chiari ii malformation is causing problems then she should have had the oxygen from birth. What has that got to do with it anyway, she needs it now so that should be all that matters. The Brisbane hospital is working hard to get this sorted out and we decide a little bit of political pressure won't hurt so we contact our local member for State government and get him involved and surely he can help.

We were told that there was a lot of arguing and debating between the hospitals and different departments and we also wrote a letter of appeal. Another reason they used, was the policies they used was for adults was the same policy for children but because of this some areas of pediatrics were overlooked. After a couple of weeks our local member for government managed to get an extension of a couple of months until Faith could have another sleep study and that report would be provided to the NSW health. The same day we found that out the company providing the oxygen telephoned and said that they were coming to collect the concentrator and we said that they would have to contact NSW health as we were allowed to keep it. At least we have the oxygen for now.

Faith's first birthday was coming up and I found this hard to cope with. I had thought that by now life would be calmer or at least we would have a well baby and she would be progressing. Sadly, Faith was still really sick and a year was about to pass and we seemed no further forward and if anything we felt like we going backwards at times. So, sadly the arrival of Faith's birthday, though a celebration of her birth and a blessing to us, was hard, as it just reminded me of the day Faith got taken away to NICU and the sickness started and I didn't feel much further along. Each day we didn't know whether she would be sick or well so even though we really wanted to have a party we couldn't as we knew the risk of her being really sick was high or even that we might be in hospital. We seem to be there a couple of times a month now.

Faith 1st birthday came and she was unwell. We sang her happy birthday and tried to be happy but it was hard. I think to her it was just another day of being sick. Faith was still not eating much pureed foods as we would get further ahead with pureed food and she would be so sick and she couldn't eat again so back to bottles. We just seem to be going in circles and a few days later Faith was back in hospital, this time the local hospital. We were only there a few days and she was transferred back to Brisbane for a possible shunt malfunction.

Shunt Malfunction

Over the next few days, when we telephoned overnight to check on Faith, we were told she was restless and confused with night and day. There were mornings we went in and the doctor's were not happy with her progress and days that were ok. Some days I stood at the doors of her room and was scared to go in because I didn't know what I would find. Sometimes it would be that Faith's condition was stable and other days I would just burst into tears as something had gone wrong. One of the days that stood out was the first Saturday, we were out at the shops buying some food. We got a call from a well spoken neurosurgeon, who explained that over the last few hours Faith's head size had increased a substantial amount. They were going to have to take her back to surgery as the neurosurgeon said it was a shunt malfunction. It had only just been put in, surely not this soon. I found this hard to take in, so I gave the phone over to my husband for it to be explained to him. This was not good. Faith's shunt valve was at the wrong pressure so they had to make an adjustment to it. Thankfully, the surgery was a success and we could come and be with her again.

The next day as we walked down the corridor of the hospital to see Faith I heard this cry and I said to hubby, that is Faith and I started walking faster and faster. When we arrived it was Faith crying and they had taken her breathing tube out so this had to be a good thing. I just had this instinct that it was my little one crying. It was an amazing feeling. The same day unfortunately, Faith had a seizure that the doctors were extremely worried about and had to relieve pressure in Faith's head by removing fluid. What an intense day but it wasn't over yet. We were quite shocked as when we turned up to see Faith they were changing her wound dressing where the flap of skin was moved. The wound had broken down extensively, it was a triangle shape and it had turned into a cavern in her back. We asked what was going on and we wanted to speak to the doctor about it, as we were not told of the seriousness of the situation. If the wound deteriorated too much more it could progress to the spina bifida site and leak cerebral spinal fluid (CSF) and it would mean the shunt would need to be replaced. This was such a shock. I have never seen anything like it.

We spoke to the plastic surgeon, who we were not impressed with, and they were going to keep a close eye on it. This happens apparently. A couple of times a year the doctors see this in the hospital, but it didn't make us feel any better. We would have to keep a close watch on the situation. I think it was at this point we had to start taking more note of what was being done, medications given and things like that. It is so much take in, particularly only 7 days after the birth of our first baby.

Over the next several weeks, there were days the doctors didn't know what was going to happen. The same routine every day. Back to our accommodation and back to the hospital. This was our world and we didn't know much that was going on outside of it. We got to know nurses, doctors, cleaners and many of the staff very well. I even had a health scare in that I had chronic pain in my back and was admitted and had to have an MRI to check there was no damage done from the spinal tap, but thankfully it was fine. I think it was all the walking and activity, not enough rest but there was nothing I could do about that.

Family kindly brought us meals and encouraged us to keep praying and keep going as we will get there. I think what I found strange as my life at home continued on without me. Time was passing but I felt like I was just treading water. There were so many stresses at this time. Sadly, there were some family that didn't understand why they couldn't come and visit. They put a lot of pressure and guilt on us. I understand that it must have been hard for those that didn't understand the seriousness of our situation but we were so exhausted and concerned about faith. It was hard to find words to explain why they must just wait. There was going to be plenty of time in the future to see Faith. But I think some people forgot to look at the situation from our point of view and how we felt and what we were going through. We were doing what was best for Faith and what she needed and if that offended others then there was nothing we could do. We tried so hard to please everybody but it isn't possible. Some days were bleak and I would sit beside Faith and tell her about our life at home, about our garden, our pets and friends. We would talk about her life soon to be at home and the beautiful things we could all do together as a family.

I celebrated my 30th birthday at the hospital. I had hoped that we would have been home by then. I also hoped that I could just ignore my birthday as I didn't feel like celebrating. By my birthday coming it made it very real how much time had passed since I first arrived pregnant. But to my surprise I had my mum, dad, aunt, uncle and cousin arrive and spoil me with gifts. My friends back home had sent cards, letters and gifts to remind me of what I had back home. I was very grateful, I even received a bunch of flowers. It was lovely to celebrate this day with family I hadn't seen in a while. But it was still hard as I was sad and I wanted to be with Faith. The night we visited on my birthday we had a mean nurse who snatched Faith away from us the moment she started to cry. We were not even given a chance to settle her. It seemed we had no control over anything. As time passed we learnt to say no and not be put in that position. We did spend a lot of each day sitting by her side but it wasn't the same as having her all to ourselves away from the nurses. We had some amazing nurses who gave us a lot of control of her care and we loved the days we had them as it made it so much easier and we could enjoy her more.

The wound on Faith's back looked terrible and they decided to put a VAC dressing on it to promote healing. A VAC (vacuum assisted closure) dressing is a device that consists of a dressing which is fitted with a tube and attached to the wound VAC (a machine). Negative pressure wound therapy is most commonly used with chronic wounds which are not responding to other forms of treatment, and sometimes with surgical wounds which have reopened. It was a delicate wound as if the VAC dressing pulled too much fluid out it could draw the cerebral spinal fluid (CSF) out and then we would have to start again with the shunt having to be replaced. I learned as much as I could about this VAC dressing machine as it wasn't commonly used in the NICU and most nurses were not trained in the use of it. Alot of nurses were not trained in the care and maintenance of a wound this serious. When the wound nurse came every few days I would question her and get her to show me all about this machine and also care of the wound. At first, the wound got slightly worse and we were extremely worried and they were talking of taking Faith back to surgery. A plastic surgeon came every day but extremely early so I struggled to catch them, but this particular day I was determined so I got up early and made my way to see Faith. I got there just before this medium height, snobbish plastic surgeon arrived. When he got there and he was examining the wound; I was asking him how wounds like this heal and he said with a serious face its magic. I said that's not true how do they heal? He then made a joke with the nurse saying it just heals like magic and smart remark to the other doctor. I was completely disgusted by his response before I could say anything he was gone. I still didn't have my answer. I later asked the wound nurse and wounds heal from the bottom of the wound upwards. This was the day I realised no more, I don't deserved to be treated like this and I spoke to the wound nurse about this plastic surgeon. Within a few days the NICU was buzzing about a doctor who told a parent that wounds heal by magic, he appeared shortly afterwards but with the consultant and made an awkward apology. I would like to hope he learned from his mistake but I don't think he did. From then on he always treated me with much more respect and answered all my questions.

One night my husband said that he had no more leave and he had to go home. I knew it was coming but still hoped it wouldn't. I had hoped we would go home before this day arrived. We were a team and did this together. Even though Faith seemed to be progressing ok, it was a few steps forward and a few back. So, the day came and my love drove off into the distance and I was left at the window alone and wondering how I was going to make it through each day and manage it by myself. I was soon to find out.