We make our own normality

We make our own normality

At first I did not really want to see anyone. I just wanted to be left alone. I needed to get my head around what we were facing. Friends and family prayed and some visited but for a while we just stayed away. It was easier this way for now - anyway. Minutes, turned into hours, hours into days and slowly my joy in my pregnancy and life started to return. The maternity clothes got pulled out from underneath the bed and so did the mother-to-be magazines. I started to plan the baby's bedroom. I guess the biggest aspect I tried not to think about was the four weeks before my due date when I would have to leave my home and relocate to Brisbane. For now, I just pushed it to the back of mind. It was still months away.

My journey is not one you hear much about as people are generally uncomfortable talking about something they do not know anything about. Particularly, when it comes to a child born with what the doctors call a ‘birth defect.’ Even the word scares people and the looks of pity. Pity is not what I want. It is to be treated normally like you would anyone else. When I pictured my life I pictured myself married with children, a house, friends and even a dog. A typical dream of a young girl. A happy ever after story with no major life challenges. The day we decided to have a baby my life changed. Oh, the excitement (thinking what have I done) and keeping the secret of being pregnant from everyone and only a secret between me and my love. What an exciting blessing!

I did not research Spina Bifida and Arnold Chiari ii Malformation as I knew what I needed to know for now. The way our families and friends coped with the news was very different. Most of them just wanted to be there to support us in any way possible. Others wanted to know what the outlook for our soon to be little one was. But how are we to know? Every situation is different and the body responds differently. I think what I struggled with most was those sort of questions, at first. To me, why look to what maybe, but look at now and the positives and deal with the future when it comes. My husband handled the hard questions, he shielded me from it and it was what I needed then.

After hiding away for a time, I returned to work. I began to do most of the things I used to and in my mind it was going to be ok. Time passed and I got bigger and bigger. I loved feeling the baby move and kick. It gave me such delight. A couple of my friends were pregnant so it was a joy sharing our pregnancy journey together even though mine was slightly different. I still longed to ‘fit in’ and not be left behind. My mum organised a baby shower. We had it at our house and this certainly brought so much fun to the baby planning and future. So many people came we had a full house. It was so much fun, we had games, food and everyone was so generous. The little bub received so many practical, fun and beautiful presents. We celebrated and it was such a joy. My husband and I painted the nursery and purchased furniture, all the little clothes washed, pressed and folded awaiting the arrival of bubs.

The day I dreaded was the day I would leave my family and friends behind including my husband to relocate to Brisbane to await the arrival of our first baby. This was so hard, so many tears, I felt this is not the way it is meant to be. My heart hurts. I wanted to be nesting at home. It was four weeks before my due date and suddenly my new found normality was gone again, a long time to return. My normality became ‘ever-changing’ and I had just have to find peace with that.

Now, three and half years on I reflect about how I have changed, how I have become a confident and assertive person more than before. I have come to understand there is not always one answer but question everything and there are many alternatives. Never accept ‘can’t.’ But most of all, I have found within each of us we decide what is normal and what is not, we can create and change. We don’t have to fit to the world’s standards. We can make our own. I have a deep empathy for others. I see the world with different eyes. My world is still a beautiful place I just had to alter my dreams and keep altering them.  

Like most mums, I want more for my child. The hurt I feel is as our little one is getting older she is not included with her little friends in their active activities. Of course, we have play dates and those type of things. But some just get concerned there little one will pull our little one’s tubes or be too rough. It would be annoying if the tubes got pulled out but it is not the end of the world. We would just put them back in again. I feel like I missed out on the ‘mum's club.’ The sharing of ideas, raising our children together, going to the park, sharing stories on how to make it through and the subject of more babies. All our stories are medical stuff and our stories of day-to-day struggles are different. We have experience in medical areas most of them will never see. Though, of course I share our journey with our friends and some try so very hard to understand. It is just hard sometimes being a little left out though not intentionally.

I have discovered children with special needs are not so uncommon and each of us has a different normality. I love my little one so much. I love playing with her and showing her new activities. I love when she understands something new for the first time, laughs late at night with her teddy - treasured moments. Our baby is growing, gaining weight and someday soon I am sure she will be able to sit up, crawl and play more. It just takes a little longer for her. Family trips are becoming more regular, I am venturing out, being more social. It requires a little more patience. It is an around about way but we have found our own version of normality, our ever changing normality. 

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The Blood Test

So this morning we headed off to the local hospital for Faith's blood test, I really really didn't want to go but we thought it was a good idea to check iron, blood count that type of thing. It would be good to see how she is going since the last blood test she had was when she was sick last year. We have quite a lot of bad experiences at the local hospital from when I was pregnant and taking Faith there. They haven't been accepting of Faith's latex allergy, had no understanding of spina bifida or Arnold Chiari and didn't seem to want to learn. The children's ward didn't have staff who even new how to catheterize, they wouldn't listen on how Faith's medications were done or her formula, they at times ruined her special formula. Though some of the staff were friendly, there attitude changed if you didn't agree with them or questioned there actions. And to go back made it REALLY stressful, I'd been dreaming about it too, not wanting to put Faith through it again.

Our local pediatrician promised he would meet us there for Faith's blood tests since taking blood hasn't been successful elsewhere, he said he would be able too. After paperwork at admissions and heading to the ward, we arrived to find he'd just left 30 seconds ago and after they paged him, he wasn't coming back, I can't believe it! I know doctors are called to emergencies but from my understanding he just went back to his rooms up the road. This doctor, though friendly and helpful and he does support us but this isn't the first time he has let us down. I was trying to trust. They called his registrar and said that they had a skilled blood taker coming and I thought, ok we can try it. A couple of hours later, a friendly lady turned up and it turned she was the same lady who had tried for 3 hours last year when Faith was sick, all this time and energy wasted when we could have just gone to the pathology. Instead Faith was exposed to the children's ward and the adult hospital germs. And of course they had trouble getting the blood taken and on the 3rd attempt, they got a small amount and a bit more from another vein. But really was all this necessary, if the doctor had just kept his word. She was extremely distressed but not just that, not taking the latex allergy really that serious and then making a comment, oh, she is a challenge! I felt like saying that is why Faith was admitted to the hospital so we could get someone extremely skilled so Faith wouldn't have to be subjected to unnecessary trauma. One of the nurses even said she won't let me touch her hand, oh, come on, surely you would not to be touched after your help stick a needle into my hand bend it the wrong way.

Faith came home completely exhausted, dark circles under her deep blue eyes, numerous bruises, she went straight to sleep and slept for nearly 4 hours. Poor little thing. She still is quite quiet and not her self. I think what I find hardest is that I spoke to the doctor about our concerns of taking blood from Faith and our concerns about the hospital previously and he just 'forgot' us. It is good the test is done as we can then accurately figure out any dietary changes but I feel that there should have been an easier and less traumatic way for everyone involved. I am thankful to come back to our little calm, peaceful home where we can recharge and recover and hopefully forget.

A late night thought!

My day basically started just after midnight and while I was attempting to go back to sleep when the small opportunity arose, I was thinking a lot about faith. Faith as believing in something unseen and great. What is faith to me? Well to start with, Faith, our daughter, is named so as when we found out that she had spina bifida and Arnold Chiari ii malformation it is what brought joy and happiness back into our pregnancy after such sorrow and despair. It is what kept me going day after day of Faith endless trips a interstate hospital and numerous surgeries, it is what gave me hope to continue when days were so dark I felt I could not see. It is when I questioned everything about my life, my self, including my past, present and future. It is moments when I didn't understand and still don't. It is trusting in my God that though I don't understand why my life took this directional change that by having faith in God I can make it through. I guess it comes back to this world being full of sin and pain and until our Lord Jesus returns and restores us pain and suffering will still be happening. I am not in a perfect world I can only have faith that my Lord to give me the strength and courage to face challenging days, to find joy, goodness and beauty around me and to appreciate the little things.  To be so very thankful for my husband and daughter.


Faith had a bad night last night and has had a hard few days we don't know why it just happens. We check all the usual suspects, UTI, shunts, teeth. These are the times I need to rely on my Saviour to help me through and sustain me as I have no strength left and tiredness over takes me. After a long night I went out to morning tea with a friend (I was reluctant as I was tired), it was so refreshing. We drunk tea, ate and talked of our families, we talked of books and it was fun. We shared common interests and I know that it gave me what I needed to continue on through the day, to be renewed, a little nourishment to keep plodding on and we all need that at different times...

One of those days

"Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen" Ephesians 3:20-21

 

It has been one of those strange days when Faith is well throughout the day but we have spent so much time cleaning up vomit. What causes this? I guess it is the Arnold Chiari ii but it is always in the back of my mind, is the shunt working ok, has Faith got a UTI after weeks and weeks of being clear or is it just one of those days where she vomits a lot. There are days like that but not so often now. Every day has some vomiting in it and we have adapted to it but a day like today, I start to wonder.

We went to a church gathering and we all shared lunch together and it was really nice catching up with friends but after lunch when Faith's tube feed was finished she had a massive vomit. I tried so hard to distract her and get her focus on something else. One of those vomits I struggle to catch and it is spread everywhere. It was a rather hard situation as it hasn't really happened in such a large group of our friends before. They were so good and trying to help anyway they could. I guess they got an insight into what our life holds from day to day. Poor little Faith was trying so hard but after being sick, the environment was too loud and too many people for her. She just snuggled into my arms. We decided at that point we should just head home and give Faith a rest. At least we tried. So after coming home and Faith having a short rest she had another vomit which is 4 in a day and that is quite a lot for Faith these days.

In between we had a lovely time sitting outside watching the world go by. Faith sang at her loudest voice and laughed as I brought the washing in. Anything and everything was funny to her. I loved hearing her voice. She is getting stronger and that little double chin wrinkles when she laughs and she gives us a big toothy grin. There is nothing like a little girl singing and chatting so very loud and sounding happy. It is amazing what Faith just takes as part of her day, nothing seems to get in her way, she still keeps trying and trying. So from saying all that, it just must be one of those days.

A Year of Oxygen

When I woke this morning I must admit that my mind floated back to 12months ago when Faith, my husband and I were in Brisbane thinking we could be here for weeks all because of cross border political red tape in acquiring an oxygen concentrator. I had mixed feelings and thoughts. I could picture not just the room with a cross hanging above the door that Faith was in but the other people that were there. It was like my mind was replaying a story in my head all the while I went on my daily activities. I felt like I was in two worlds, trapped in the present and the past. This seems to happen more when I can easily identify a date related to this time. It was a couple of days before Mother's Day 2011 and now it is around the same time but in 2012. We came to the hospital free of cords and the freedom to move around and we left with a supply of nasal prongs, tape and oxygen bottles. The little face I love now obscured by plastic nasal prongs and a heavy bottle on my shoulder. She is still just as perfect though :) I know this is a positive step in its on own way. Two days after we started the oxygen Faith started talking and saying words, she no longer breathed so deeply and there was no huge dent in her chest when she breathed. All this change over .25 of a litre, such a small amount of oxygen to make such a huge difference. I did feel safer with Faith on oxygen as now her oxygen saturation didn't drop so she was more stable. Faith has no respiratory problems it is all related to the Arnold Chiari ii malformation.

I don't know if other families struggle with doctor's not fully understanding Arnold Chiari ii, but we do. I can see why Faith doesn't progress in some areas and it is because of the Arnold Chiari ii. I don't understand why the doctor's cannot see this, one doctor said to me the other day that Arnold Chiari is just part of spina bifida, true in some cases, but Faith's is symptomatic. For us, if Faith didn't have symptomatic Arnold Chiari she most likely wouldn't have developed syringomyelia and Faith wouldn't have had so many challenges. It just frustrates me sometimes when doctor's fail to see or just can't. Our neurologist and neurosurgeons understand it because not only have they physically seen it in Faith they have seen it in the multiple MRI scans. But I digress, I think my brain needs a print off function so that when I have lots to say I can print off the emotions, frustrations and feelings. It usually happens late at night and then if I could print it off I could then refer to it later or recount ideas I had during the dark hours of the night. I am always thinking of ways to help Faith progress further to grow and prosper.

Joys of our garden

With a year of oxygen we have learnt many things about patience, perseverance and appreciation of the little things. Life is more fragile that I had imagined but has more beauty to be found when I know where to look. Life is precious. Faith loves going outside and watching the breeze touch the leaves and the birds sing a song as they feed in the trees and talk to each other. She is so intrigued with the world outside. She watches from our deck but hopefully soon the time will come and we will have a low set house so we can go outside and touch the soft grass, watch the ants march by, smell the flowers and watch nature in action close up. I just have to be patient while we wait for our house to sell. But when it does the world will open up a little more for my husband, Faith and I. Again patience and trust in God is a must. (James 1:1-8) Time will pass and hopefully sooner rather later Faith will be off the oxygen and she can be free from one less tube.

A Way Forward - NG Tube

We were transferred by ambulance and it was a rough ride, Faith was really uncomfortable and I could tell she was feeling just as sick as I was. It was quite late at night and Faith was due a bottle feed and I was also hungry including the ambulance drivers, so they stopped at McDonald's and we had some food to keep us going. We got to the Brisbane hospital by midnight and got straight in. Faith was reviewed by a neurosurgeon and they were going to do a MRI but decided to leave it until the next day. Faith was also on a drip as she had another UTI. By about 2am we were moved to the big kids surgical ward as Faith was now over 1 and she would no longer be taken to the babies ward. We both feel straight asleep. Faith was on neurological observations so they woke her every couple of hours. They struggled to wake Faith as she was so exhausted but that is all it was.

The next day Faith had to fast for the MRI and as she wasn't drinking very well anyway and had no fluids running through so we were concerned about dehydration. The MRI got rescheduled for the next day. We could see she was very lethargic as well as having her normal vomiting she was really unwell from the UTI. The next day the MRI went fine. Positive news, Faith's shunt is working fine and the ventricles are looking good. False alarm! 

The doctors decided to keep Faith in hospital to treat the UTI again by IV antibiotics. We stayed an additional 3 days and were sent home with Faith on Cephalexin but we knew this wasn't going to work long as she was always resistant to this antibiotic. Give her a few days and the UTI would be back. Her vomiting was back to normal but she still wasn't really really well. Faith's weight was really struggling as she vomited so much formula up. The dietitian thought it best to try another formula called nutrini and we mixed it temporarily with the infatini so she wouldn't get too confused with the tastes. But we could see Faith was weak and wasn't growing as she should but there seemed nothing we could do but keep going on as we were.

We came home and life went back to the normal way, neuropathic pain, vomiting, sweating, life was just the same. We'd still see a few good days but our biggest concern was all this vomiting and the lack of weight gain. We had another spina bifida clinic and we saw the consultant pediatrician and we said that we thought Faith needed a NG tube or something similar as she is losing weight and just not getting stronger, Faith's ribs could now be seen. UTI's were a constant battle and we never seemed on top of them. None of the antibiotics seemed to work. That particular day Faith was really sick. We had a choice of coming back the following week as an elective admission or get admitted that day. We thought that it was urgent enough so asked for that day. Faith was admitted and put on a drip again to treat the UTI. So over UTI's. Because the vomiting wasn't explainable (Arnold Chiari ii malformation was enough) as such so Faith was isolated. We knew it wasn't anything catchy as she has had it for months but as precaution I guess. 

That night a lovely nurse showed us how to put an NG tube down and we started the feeds. The doctor over prescribed the amount of formula needed so we had way to much food going in and it was a constant battle as it would then make Faith vomit more as she was over full. Eventually we just refused that amount and she did do better and got stronger with slightly adjusted amounts. We stayed in hospital nearly a week and got shown how to insert an NG tube. We then headed home. It was at this point, though we didn't know it at the time, a new antibiotic was introduced to us that would improve Faith's life and help her grow. Faith was put on a 10 day course of Nitrofurtantoin.This antibiotic seem to be only available from the Brisbane hospital. It caused Faith really bad nausea and we had to give some ondansetron to help her through it. After 10 days she got better and we had some ok days, still with some vomiting but a little bit better. UTI's seem to occur 2-3 times per month but a week good is a beginning. It is was good to have a bright spot. Maybe this is the beginning!

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.

Oxygen

In hospital again, we seem to live here, we know the staff so well and how things work and it is becoming second nature. Whenever we are in hospital Faith is attached to a oxygen saturation monitor and during the night I have always noticed that at times her oxygen saturation drops to around 60% and by the time I get the nurse in to check Faith, it has gone back up to 100%. She seems to do this all through the night but more so early in the night. I kept telling the nurse and she said that she has recorded it but since she didn't see it and whenever the nurse stayed it wouldn't happen. One day the oxygen saturation did drop when she was awake and this hadn't been noticed before as she usually had the monitor on a night. I alerted the nurse to the situation and she noted it again and called the pediatrician. We are getting somewhere. When the consultant called in we explained it to him (as he wasn't told) and he was concerned as breathing difficulties and apnea are a big concern with Arnold Chiari ii malformation. He said that this needed to be investigated but as it was Friday we should just go home and come back next week for a preliminary investigation. If anything significant is found then they will contact the respiratory team for a sleep study. He did say that we should have a apnea monitor as a precaution. We were quite anxious as we could see he was concerned too.

We got home and found it hard to get a monitor, small towns, we should have known and got one in Brisbane. We tried the local hospital and they said you will have to wait until Monday when the pediatrician is in. She needed one straight away not a few days away. In the end we found a really expensive one but at least we could sleep soundly at night. It was something. We were only home a few days and we headed back to Brisbane. We were unexpectedly taken to the bigger kids ward as the babies ward was closed for renovation. This was a bit of shock going from babies ward to big kids ward. We know Faith would go there when she was older and it would be fine but she wasn't ready. Or maybe we were not. Either way first impressions didn't go well. They didn't know us so they appeared distrustful of our care of Faith. This put us on guard which meant no rest because we couldn't trust them. They just wandered in and said, and started hunting around for catheters, if she had asked she would have know we do that and it needs to be done right and not so frequently as they were trying to do. We found straight away they didn't listen to what we would say about Faith's care. It was a constant battle. They would come in and go to start doing something to Faith and I would ask politely what are they doing and when they explained it was either unnecessary as we took care of it or it was totally wrong. It was quite frustrating. The first night there Faith was just to be connected to the oxygen saturation monitor and it would be recorded and the respiratory doctors would review and see what needed to be done.

As suspected she did drop quite low and for extended periods at a time. A nurse looking after another patient wanted to give her oxygen but the nurse that was looking after Faith said no this is a recording we shouldn't touch it. I found that distressing and when I was about to say I didn't agree, her saturation went back up to 100% and she was mostly ok for the rest of the night. The next morning it was decided that Faith needed a detailed sleep study but there was quite a wait to have a sleep study done but luckily at the last moment someone cancelled and Faith got the spot. Little did I know that this was the last day I would walk free with no oxygen tubes and tank on my shoulder. I wish I had cherished the freedom more. Anyway, Faith's head was covered in wires and she had some attached to her chest, tummy and feet. A hat that went over Faith's chin was put on as well so the wires didn't move. She cried all the way through and continued to scream and complain for quite a few hours before she settled. The previous night's monitoring I had little sleep so when Faith was settled and asleep I fell into a deep sleep. The next time I woke Faith was on oxygen and the respiratory nurses left it on and connected until the specialists review the findings. We walked back to the ward attached to the oxygen cylinder and after a stressful entrance we got back to Faith's bed.

It was found that due to neurological reasons (Arnold Chiari ii Malformation) Faith required oxygen 24hours a day. For some reason I saw us coming to hospital to see whether Faith needed oxygen but I didn't think 24hours a day. I thought she would need it at night time. This was a shock. We crossed state borders for Faith's care and the health system in NSW works a lot differently to QLD so we unfortunately found out that we would have to weeks and weeks in hospital before to go home as the health system to obtain oxygen was so slow. This was quite a shock. I was so upset, staying away from home just because our state government couldn't organise a supply of oxygen for our daughter. Surely there had to be some other way. We looked into privately buying oxygen but it was so expensive. We would have to wait and wait.

My first Mother's Day was to be spent in hospital, another special occasion in hospital. I was sad. A wonderful surprise was that Faith said her first word, dada and a few hours later mama, what a considerate little girl saying her first two words being dada and mama on the same day. She started talking so much from this point, it has to be because of the oxygen. How exciting, Faith's first words! What a great blessing! The day before Mother's Day too. On Mother's Day my husband bought me a beautiful bunch of roses and Faith bought me ugg boots, very spoiled. My mum and dad visited and the make it happen pain nurse organised a portable oxygen cylinder so we could go and have lunch together. That was so much fun. We had a family day walking along the river and dining out.

My husband had to go home sadly and with ongoing challenges of the current ward, we were being moved back to babies ward as it had reopened. Yay! That night I got so sick, I had picked up a vomiting bug at the other ward, so we were immediately isolated. I was so sick and my husband had to come back as I could barely move. Thankfully, it was only a 24hour bug and apart from being weak and unsteady I was able to just look after Faith. A remarkable thing happened the respiratory nurse had arranged and pulled some strings and got us some portable oxygen cylinders from the hospital. Unbelievable! Wonderful! The way it worked the local hospital pays for the first couple of weeks of oxygen so that would get us going and she would push NSW Health to comply and give Faith oxygen. We were going home! After being told we would be in hospital for weeks we were going home!!!!!

What is our day like?

What is a day like for us at the moment? Well, it involves a morning start before dawn not with a happy baby but one with neuropathic pain, vomiting and extreme distress. I am not sure how I am meant to cope with this, if all things were "normalish" then I would most likely be at the hospital but with us this a normal aspect of Faith's life and ours too. Most people who haven't experienced life with a child with special needs don't know how to comprehend this, they expect us to function normally and visit family and friends and do all the 'normal things'. I explain as best as possible but the message doesn't seem to get through it seems to get ignored or acknowledged, then forgotten. Or I guess the other action of some people is to stop calling and stop wanting to hang out, I think this is the worst part as it hurts more. I can understand why they run away and stop contact, I guess it is based in fear and not being able to understand. But, it doesn't make it any easier to manage when we are hurting too and find life hard, intense, frightening and lonely. I didn't imagine it like this, I didn't imagine following this path. I just want to do normal baby stuff too. I understand why some turn away. I don't go out much as the vomiting can come at any time and Faith can't cope with it as she is so unwell, so we just stay home and are hidden away from the world.

Other days are worse and we get to the point where we pack up our things and get in the car and drive back to Brisbane and present to the emergency department as she gets so sick. The trip in the car is a nightmare, instead of being able to manage the vomiting to an extent at home it is a moving car where I sit in the back and learn to catch vomit. Lots of fun. We usually stay 3-7 days and Faith gets a little better but as soon as we get home it starts all over again. I have so many photos of our happier days and they are generally in hospital or with us walking by the Brisbane River. We still attend the spina bifida clinics though now we manage to see all the doctors as Faith's an in patient and the doctors see how sick she is and admit her again and we go through the same cycle over and over again. There are not many good days and not much of a life for any of us let alone Faith. She still can't sit up and developmentally we are falling behind, but it's not fair as she is always sick and there is no chance for growth and development if she is never well more than a week at a time.

A bright spark came unexpectedly in that we had a couple of good days that turned into a week, we loved this time. There was quiet and peaceful sleep. A baby that smiled a little. The neuropathic pain stopped at this time and so did the sweating. Bad days still out numbered the good days but it was a start. Each time we saw the sweating and strange temperature on each side of the body return we knew the bad days were back. Amongst this we found out that Faith was retaining more wee in her bladder than she should, so we started catheterizing 4 times a day. It wasn't a hard task it just another thing to do in our day. Faith started to get Urinary tract infections (UTI) which brought on more vomiting, temperatures and weight loss. To get Faith to gain weight was so hard. We changed infatrini formula to see if that would help. Faith sucked the bottle so intensely but we really needed to pace her as the faster she drunk the faster she would throw up. She would still vomit anyway but we just wanted to keep the formula in her as long as possible. Every time we tried pureed foods we would get into a good rhythm and she would get really sick again and we would be back to the beginning. It was so discouraging.

At times the doctors didn't want to treat her UTI's as they said if she has symptoms we will treat it. But the problem was how could you tell whether she was symptomatic for the UTI's as she was vomiting so much anyway. The Arnold Chiari does cause some of the vomiting but I think the UTI's were contributing as well. It was so hard to tell and so hard to know what to do. We were constantly questioning the doctors and trying to learn more and to try and figure out what was best for Faith. Doctors don't always know what is best even though the majority of them were trying hard. Faith was a prophylactic antibiotic being Batrium but after being on it for a couple of months it was found that all the UTI strains she had were resistant so it wasn't doing much so she was taken off the prophylactic. Actually Faith was resistant to so many of the antibiotics and she would improve for a little while on the drip antibiotic like Gentamicin but as soon as she was sent home with another one like Cephalexin, the UTI would return and back to hospital she went.

We spent so much time living at the Brisbane hospital as the local hospital service where we lived just couldn't handle Faith's conditions. It was to complicated for them. Every time she went there she always ended up picking up some other bug and was sicker than before. For now, we just had to keep going a minute at a time and hope and keep hoping and praying that life would get easier and we would see light at the end of the tunnel. Surely it wasn't far away!

Syrinx Shunted

We were still in our isolation room and late one night the room was needed so we moved out which I didn't mind, I think it will be good to be around other people. Except for it was done right before the nurses handover, an agency nurse came in and said we are going now. Faith was attached to a pressure reduction mattress and she turned it off and left us. The mattress started to deflate and no sign of the nurse. Poor little Faith was getting distressed as she had been asleep and it had woken her up. I called another nurse and we moved and I said that I wasn't happy how this happened. It turned out there was no rush to move anyway. I got moved into a very noisy room in that the mother of one of the children talked on her mobile really loud and late at night. A little bit in considerate. The next day was the day before Faith's syrinx was to be shunted (SP shunt) . Both hubby and I were nervous. To put Faith through this again is very hard.

The day of surgery came again and this time the anesthetist was happy for me to come into the operating room and be there while Faith was put off to sleep. This made me feel so much better. I carried her in and the room was so big and so many people. I saw the consultant neurosurgeon talking to less experienced neurosurgeon about the procedure. Nurses were busily getting everything ready. I remember the room to be extremely clean and a light blue colour. I put Faith on the bed and they gave her some gas to help her off to sleep. She fought it and it was hard. She was screaming and looking at me with pleading eyes. I talked to her softly and tickled her head and held her hand. When she was peaceful I was shown out. Even though it was hard I felt better seeing where she was and being with her when went to sleep. They thought the surgery would only take a few hours. Faith was to be sent back to the Paediatric Intensive Care Unit afterwards.

This day was much easier and the neurosurgeon fellow came out and spoke to us and said that it had gone much better and when the syringopleural shunt was put in there was a gush of Cerebral spinal fluid going through. She also said that the nerves had been squashed and it would take quite a while for them to find there shape again. Faith wasn't in half as much discomfort as she was last time. Back in PICU, Faith had beads of sweat down half her body (which isn't unusual)and it started at the level of where the shunt was put in so that was a little different. We went through the medications again as we always do and they had them wrong so luckily we got in before any of them were due. It always pays to double check. She was to stay the night in PICU and head back to the ward in the morning. The PICU was full there was no spare beds so they wanted to get Faith back to the ward as soon as possible. But by the morning PICU was empty, all the children had been sent to wards.

The neurosurgeons said that it could take a really long time for us to see the benefits of both the shunted syrinx and the dural scoring. One aspect we did see some improvement in was that she ate pureed solids better for now and was a little happier on occasions. After a few days we were allowed to take Faith out of the hospital and go for a walk down by the river. It was wonderful to take Faith out and about. She loved getting out and people watching. We plodded through the days and the day came when we could go home. The neurosurgeon fellow visited and brought Faith a present. It was a beautiful cloth book, a small coloured ball and a teething toy. How lovely, she said she shouldn't but she did anyway. What a great present! So we were on our way home and we hoped to see improvement soon. Homeward bound again!

The Recovery

I couldn't take it anymore I had to go and see Faith. I buzzed in and said who I was and they let us in. I hadn't been in the Paeditric Intensive Care Unit (PICU) before and it was so different to the Neonatal Intensive Care Unit (NICU). There were older kids who looked very sick and tiny babies too. There were toy's hanging from the roof and big characters on the walls. It made it have a less hospital sterile feel. The door we came in by didn't lead us straight to the reception so we sort of fumbled around until we found it. Then before we had to say anything, we saw her. Oh my goodness, my heart leaped, was it true, this sad little frame, pale, head swollen, oxygen, drips, machines all around, NG tube (nasal gastric tube, it was terrible. Her head had to be kept so still and she was on a lot of pain relief.

Every now and then she would start to cry and I would tickle her forehead and she would be calm. I whispered sweet things to her. She still pulled up her legs and was sweating badly. The neurosurgeons were unable to shunt the syrinx (click for condition explained) as they thought that the dural scoring was enough for now. They were hoping this would be enough but we were not so sure. I wanted to just stay with her and not leave but I didn't like this environment either and I didn't want to be there. I longed for us all to be home and life to be peaceful and quiet. The nurse that was looking Faith was lovely she went through all the medications with us and we were correcting mistakes in her normal medications. It always pays to double check everything.

We had brought her pink sea horse in and this seem to calm her. It played soft music. The nurses later said that when we were not there and she was crying in pain they would play the sea horse music and she would go back off to sleep. So we just sat with her and kept her company. She seemed to be in a lot of pain and they had her hooked up to a PCA (Patient Controlled Analgesia) to help the pain. The plan was that Faith would be sent to the ward the next day. We were not able to stay with her overnight so we had arranged other accommodation. It was so strange leaving her there, we went to our room, very close to the hospital. I felt like I was letting her down. I wanted to look after her but I couldn't. We had dinner and had an early night. A very restless sleep.

The visiting hours at the PICU were limited in the morning, so we went in as early as we could. We had missed the doctor's rounds but we were told that she had done ok overnight. She was off the oxygen which was a good thing but still in pain. They were going to send her to the ward that morning but it didn't get organised until afternoon. We were taken back to the same spot at the babies ward that we had had the a few days previous. Even though it wasn't far, only a few floors, Faith seemed to be in a lot of pain from the bumps. We just had to tell the nurse when we believed she was in pain and they would press the button. I really wanted to press it as the nurses could take so long sometimes. Well, so far Faith still seemed to be in pain and sweated the same amount. The neurosurgeons said it could take a few days until we would see any change but I wanted to see one now. Now we could stay with her. We had to turn her head every few hours as she wouldn't as it was too painful.

One morning Faith's fontanelles was really really full and it didn't seem to be going down and since she had just had surgery we were getting quite concerned. So, when the neurosurgeons came to check on Faith's progress we mentioned and showed Faith's fontanelles and they said it would be better to check that everything is ok and booked Faith in for a CT scan later that day. It was quite a painful experience for Faith as the bumpy ride to radiology and the movement upset her but luckily she still had the PCA going she could have some pain relief. I stayed with her for the scan as a stranger has no success in settling her. Afterwards for Faith being so brave she was given a black, blue and red knitted teddy bear. Very sweet. Thankfully the CT scan report was showing that the shunt was working fine so it was probably just related to the swelling in head from the surgery.  

Just over 24 hours later and we were quickly transferred to an isolated room as there had been a out break of the norovirus in the PICU. So every child/baby that had been in contact with the PICU in the last 2 days had to be isolated as doctors and nurses were really sick including quite a few patients.  Faith at this stage didn't have any symptoms which was really good. The days felt so long. We had no contact with hardly anyone and every time someone came into the room they were dressed in protective clothing and this frightened Faith so much. She now still hates the sound of rustling plastic. Faith was cleared of the norovirus but they left us in the private room until it was needed so that was good I guess.

About 4 days passed and we still so no improvement in Faith's original condition. The pain team had been called in and they said that Faith was experiencing neuropathic pain and what they called complex regional pain syndrome and that was what was causing her pain, also to pull up her legs, touch sensitivity, sweating and her foot twitches. It is related to the arnold chiari ii malformation, they just wanted to find someway of treating it. The pain team said that starting some medication could help the situation while we wait for the effects of the surgeries to come apparent. We were extremely skeptical about this medication, gabapentin as it is not often used in babies so young and they don't know what side effects really are. We decided on advice from the neurosurgeons we should give it go as it wasn't a permanent thing. I felt terrible, I really wasn't sure about this medication. We still believed this to be caused by the syrinx, the vomiting was still happening and we couldn't see any improvement from the decompression surgery. We discussed this with the neurosurgeons and they agreed that they needed to take Faith back to surgery and insert a SP (syringopleural) shunt into the syrinx. So, the plan was to take Faith back to surgery 7 days after the decompression surgery. Here we go again!

Decompression Surgery

The morning of the surgery, Faith woke unwell as usual. My husband came in early so we could entertain Faith while we waited for her to be taken to the operating room. I could tell she was hungry and wanted her bottle. She was now on formula as I stopped expressing milk in December 2010. I felt trepidation, fear, are we doing the right thing? I wanted to cry. I dressed Faith in a new little outfit I bought. It was so cute, it was red and blue with stripes. At last we were called to go down to the surgery admission room, we entered, it was all white. There were four spots to sit and conduct observations before the patient was taken into the operating room. Nerves were welling even more in my tummy. I held Faith tight. I didn't want to let her go. We sat on the seat closest to the door near the theatres. The anesthetist said that we couldn't come in and stay with Faith until she went to sleep and I had really wanted to. Instead, a nurse came, picked Faith up and she was smiling and through the double doors they went. My heart sunk, had we done the right thing, this was wrong, I don't want her taken away from me. I cried. I hoped I had brought enough tissues. It was thought the surgery would take at least a couple of hours so we didn't need to go straight back to the surgery waiting room. We went to get some breakfast.

As we were coming out of the lift, the consultant neurosurgeon came in, he was holding a little blackish box with little silver dots on it. We assumed this must be the special instrument that was borrowed from the Melbourne Children's Hospital. I am pretty sure he knew it was us but he was on his way to theatre to operate on our little girl. How are we meant to function during this time! A bright spark that day was we got an unexpected but blessed visitor. As the hospital is a catholic hospital in each room there is always a cross hanging on the wall. The room we were in didn't have one. It is always a good reminder of what Christ has done for us by having it hanging there. It forces it into my mind. My husband mentioned it to a friendly lady at the hospital reception and we didn't think much of it after that. But that afternoon when our heart ached, our minds wandered and thought of what might happen. A man walked into the parent's lounge and asked for us, he came over and said that he worked in pastoral care and the lady at reception mentioned us. He was a little light in our darkness, he handed us a palm cross so we could always remember by holding it in our hand. How beautiful!  I held it tight and prayed and prayed.

A few hours into our day of anxiously waiting my mobile rang and it was Dr JC, the neurosurgeon fellow, my heart skipped a beat, butterflies rose, I started to sweat, and she said that they haven't started the operation yet as they have been unable to get a drip into Faith (the one from the previous night had tissued). The anesthetist was working very hard to get a secure line in so they could begin. We were thinking that they might be nearly done and they hadn't even begun. Tears welled in my eyes, back to waiting. After a while of aimlessly wandering the through the peaceful grounds of the hospital we returned to the parent's waiting room. There were families seating around all looking tense and stressed. Every now and then the room telephone would ring and someone would anxiously answer it and some anxious parent hastily disappeared out of the room. One by one, families came and left. We just waited! It was like time was standing still for us and everyone was moving on and we were left behind. I flicked through magazines, had a crack at the Nintendo, tried to read a book but nothing could help. I just wanted Faith. At last, my mobile rang and we were asked to come back to the surgery admission rooms. Remember to breathe! We hurried back to the surgery admission rooms and went in and the nurse showed us to a private room where we were to wait. What was about to happen I did not know. But I was frighten and started shaking a little. I felt like I had tuned out and was in a strange cloudy daze.

We sat down in a small room and a few minutes later, but it felt a lot longer, the consultant neurosurgeon came in. He was dressed in green surgical wear. He started talking and I suddenly couldn't look into his face, I was afraid of what I might see. Instead, I stared at the floor and my eyes traveled to his shoes. His shoes I can remember, suede black sort of colour and there was blood on them, blood, my Faith's blood. He was saying they got as far as the laminectomy (part of one or more vertebrae is removed) and Faith started bleeding, she had lost 100-150mls of blood. I hadn't thought about this before. He said that he'd rather come in and tell us that they aborted the surgery than say they continued and she didn't make it. This was serious. I felt light headed and dizzy. Faith had to have a blood transfusion and would be in recovery in about an hour and we could go and see her soon. I can't remember much else he said, as I was staring to much at his shoes. His shoes with Faith's blood on it. This was to much. Now, I urgently wanted to see Faith. My husband later told me that the neurosurgeon used another technique to see if that would help, he scored the dura. The dura is the thick outer covering of the brain and spinal cord. Dural scoring is a surgical technique where a series of cuts are made into the dura, but the dura is not completely opened. Now we had to wait for Faith to go to recovery.

Paediatric Intensive Care Unit (PICU) was a secured area. We buzzed in and got into the waiting area. It was a rather long corridor with seats all along it, a small play area and at the end a hand basin to wash your hands before entering and hand sanitizer too. I remember there was no hand towels to dry our hands. We sat down as it was all to much, I started to cry and my darling husband comforted me. There were double doors and single doors and then as I looked up I saw this little pale, very still baby go past and it was Faith. There were nurses and doctors wheeling her into the other secured area. Too much, this is all too much, her head was swollen and secured so she didn't wiggle. I could hear her panic cry. She needed me. Not people she didn't know. The kindly Dr JC, neurosurgeon fellow came in and said to me what is wrong? She said, Faith is ok and I said it is all to much and I just want to see for myself that Faith is ok. The lovely doctor reassured us and sat with us a minute. It meant so much she'd taken the time to sit with us. They needed another half an hour to settle Faith into PICU so we had to wait. So much for the half an hour it turned into at least two. We knew Faith was inside those doors and we were not allowed in there yet.We just had to wait again!

Waiting for Decompression Surgery

We were home again but still with the same problems as when we arrived in Brisbane for a hopeful answer. The spina bifida clinic was only a short time away and we were going to have to do something. Faith couldn't live like this and nor could we. There was no escape for Faith from the pain, vomiting and suffering, day after day it went on. It went on into every night and we reached a point when we needed a game plan to educate these doctor's on what life is like for Faith and how she is symptomatic for both the syrinx and the arnold chiari. But how? We decided to get the social worker involved. We sent her an email outlining what Faith goes through every day and every night. We explained how life was and how we were feeling about the situation and the lack respect for the parents opinion. When we arrived at the spina bifida clinic, the social worker sat in with us on the consultation with the neurologist. She had already spoken to her and at last we were being listened too. Faith had changed so much since our last visit and she saw first hand how sick she was. The neurologist saw the hot and cold sweating on different sides of the body, the sweating on one side of the body, the pain and the distress she was in. She saw it at last and she acted.

The neurologist got a second opinion from another consultant and then hastily called the neurosurgeons. We also saw a consultant paediatrician who specialized in spina bifida and he called the neurosurgeon too. The doctors at last understood. It went on for a few hours, it felt like a whirlwind. We saw doctor after doctor and explained what was going on. The neurosurgeons decided that posterior fossa decompression surgery and shunt the syrinx was the way to go. It was explained how this operation would work and what it would do. Frightening, but what other way forward was there, there was only one. The surgery was scheduled for a couple weeks into February 2011. At first the doctors wanted Faith to stay in hospital until surgery but they thought we have been living with this for a long time now and it might not be best for the family. Faith might catch some other bug in the hospital so decided to discharge her.

A week before the surgery we had to bring Faith in for another MRI so the neurosurgeons could see where the blood vessels were and be as prepared as possible for the surgery. Faith was already scheduled for a CT scan as the plastic surgeons were looking at the possibility of whether it would be beneficial for Faith to have a helmet to reshape her head. We were very unsure about this as we had to be careful of pressure spots and her shunt. In consultation with the neurosurgeons we later decided that her head shape had formed nicely and it was a waste of time but at this point we were still seeing where the road led. Back to the MRI/CT scan, we had to report to the day surgery unit and sit in a crowded waiting room until they were ready for Faith. She had to have another general anesthetic and because an MRI had been added we were bumped to the bottom of the list. She was so hungry and we waited and waited. This time there was no power outages and the MRI and CT were completed as quickly as possible. We were taken back to the day surgery unit where we had to spend a few hours waiting to see if Faith had any reaction to the anesthetic. She was fine.

With the surgery the following week we started to plan, we would have to be in Brisbane at least a week. We had to organise food and accommodation. We had to be at the hospital the day before and we were desperately hoping that this surgery would give Faith a better life. It was hard waiting for another week and we really wished it wasn't so far away. A week felt such a long way off. But the days did pass and the day to go back to Brisbane came. We were feeling so anxious and stressed, we were sharp with each other and struggling. The trip there took longer than usual as it was raining again. But we eventually arrived.

We lined up at admissions and booked in.  The staff were friendly and talked to Faith. We headed back to the well walked corridors of the babies ward and to our surprise they had no beds. Yes, we were expected but no where for us to go. This threw us and we were asked to wait in the parents lounge. It was hard not to jump to conclusions thinking what does this mean, no surgery, no bed, what are we going to do. The neurosurgeons had not forgotten us and we had a visit from the registrar and fellow who we had never met before. We were very impressed by this new registrar and fellow. They explained the procedure. Faith was to have a posterior fossa decompression. The goal of this procedure is to create more room around the malformation and restore the flow of spinal fluid. They said that this procedure was rarely done done at this hospital on someone so tiny. The neurosurgeons had to order a special instrument from the Melbourne children's hospital to assist them. We also went through the risks of the surgery. Faith would have to go to the Paediatric Intensive Care (PICU) afterwards and would have to keep her head very still and this was a very dedicate time after the operation. She might be there for a few days but would take it a step at a time. Brain overload! Then the nurse came in. Faith's bed was ready. Here we go!

Faith had a lovely position next to the window and I had a window bed to sleep on. There were two other babies in the room. A new born near the door and a little baby boy opposite us, who was alone. Faith had to have bloods taken and get a drip put in her hand. She is such a challenge to get a drip into as she has had so many. This happened later that night. This was really going to happen. They were checking everything including blood type, white cells all the usual tests. The surgery was scheduled for pretty much first thing in the morning. The surgery schedule had be cleared as they were not sure how long it would take. It all just sounds like a bad dream, I am now meant to wake up!

MRI

We drove to Brisbane for the MRI and it wasn't a fun trip, it was pouring rain and the rivers and creeks were raising but we had to get through and luckily we made it (it also happened to be the worst floods Brisbane had experienced). We rang to confirm our appointment and I think they were about to cancel it until we told them we drove all this way. We later found out we were the only appointment that day, the remainder got rescheduled due to the floods. We got there early as usual. Faith had to be put under a general anesthetic and the scan was going to take a couple of hours at least. She was going to be taken to the babies ward afterwards to ensure she recovered ok. If everything went ok we were free to take her back to our hotel. We had to stay nearby for one night as a precaution. Half way through the MRI the power went out as the flood waters were rising. We panicked as Faith was inside the MRI machine. A nurse came out and said that she is fine, they have a generator but the MRI machine did go off line and they would have to reboot it so we had to wait even longer. Faith was under an anesthetic for a lot longer than should have been. She came out and was so hungry. We took her upstairs to the babies ward and gave her a big feed. With no problems from the anesthetic we returned to our hotel.

Later that day we received a telephone call from a rather concerned neurosurgeon. He explained that he was the on call registrar and that he had been asked to review the MRI report as they had found an extremely large syrinx. A syrinx? We didn't even know what that was. It is a abnormal fluid-filled space found within the spinal cord. It is often found in children with spina bifida myelomeningocele. This is what Faith has.  We were not sure what this meant. He said that our neurosurgeon wasn't on call so he would talk to the one that was and would call back early the next morning. He said that if an adult had a syrinx that big then they would operate in the not to distance future. Was this the answer that we needed? It this why Faith was having so much trouble. We didn't know. We just had to wait.

The next morning dragged on until we got a call from the neurosurgeon registrar and he said that we would need to come back and see our own consultant neurosurgeon. He said that a syrinx can either symptomatic or asymptomatic. We were thinking, well it's obvious that it is symptomatic. Faith was starting to go numb in her legs and didn't respond anymore to touch. With the floods continuing to rise we couldn't stay in Brisbane any longer and with the appointment with our own neurosurgeon a little way away, we went home. Life at home wasn't easy, the mornings dragged out with Faith so chronically sick and not much being done. We pushed for appointments to be brought forward but didn't have much success.

 After some research we believed the syrinx to be the cause of this pain and it appeared the arnold chiari ii malformation was also symptomatic and it needed to be addressed. We just couldn't make the doctors believe it. We were told we just had to wait for our appointments. We'd spend every day with a very sick baby and we struggled with knowing what to do. Our hearts were heavy and anxious with worry. The days all felt dark. There was no rest for any of us. Faith had been up most of the night in distress and with focal seizures continuing we gave her some midazolam. We had never tried this before and her breathing slowed and she was asleep. We raced her as fast as we could to the local hospital and we were taken straight in. Of course, this woke her up and after being monitored for several hours she was fine. Faith has a strange temperature control as well, so half her body would feel ice cold and the other would be hot. Because of that taking her temperature was a challenge. When they did her temperature it was high and so on that they admitted her. We protested and explained this does happen with her. At last, our own paediatrician agreed to let us take her home but leave her admitted and come back if there are any problems.

That night she seemed ok but the next morning again she had a temperature on top of the morning seizures, sweating, pulling up legs and jerking them. Our local hospital promised to talk to the neurologists but never did so we left very early in the morning and presented to the Brisbane hospital. Faith was admitted straight away and it turned out that in the previous 24hours she had picked up a gastro bug. So we were isolated as well. We spoke to the neurologists and they said the best thing is for them to film her so they could see what is happening with the seizures. This also gave us a chance to get the neurosurgeons to come and talk to us about the MRI report as our appointment was still a couple of weeks off. We spoke with the consultant neurosurgeon and he said, yes it was a syrinx and it was one of the largest he has seen and there was a lot of built up pressure in the brain from the arnold chiari ii malformation but unless symptomatic there was nothing they would do at this stage. We couldn't believe he was serious in what he was saying, can't you see our little baby and how she is suffering but he was putting that down to the neurologists to deal with. He said that if the neurologist said that Faith was symptomatic with the syrinx and arnold chiari ii then they would act but not until then.

The seizures were filmed and they did see what we were talking about and they were not seizures, wow, we couldn't believe it, what were we going to? Astonished. They said of course it wasn't normal but it wasn't seizures. If this wasn't seizure activity what is causing Faith's foot to twitch and the sweating, the hot and cold temperature, the vomiting, the pulling up of the legs and the jerking movement. What was it then?

Home!

With such excitement we are home! Our house had been decorated with welcome home signs and flowers. It was 9 weeks since I have been home and it feels so good, though strange. I brought Faith straight upstairs and showed her the house and her room, took her onto the deck pointing at this and that. So good to be home. Our Faith was with us at last. Over the next few days and nights we felt Faith wasn't feeding well and she is such an unsettled baby. She sweats a lot and pulls her legs up. We just assume this is the way it is. My husband had to go back to work the next day so it was just Faith and I. It was nice though I was exhausted. Being out of the hospital environment was fantastic. Friends and family visited and brought presents for us and we also got yummy meals and we felt loved and cared for. We managed to get a baby health nurse to come and visit and weigh Faith and talk to the nurse about feeding issues. She said that there is a feeding and sleep clinic we could come too and managed to get in the following week. The first few days at home were busy, we had the wound nurse coming most days. I would change the dressing but she would just check it and provide the supplies we needed. It was looking so much better. The spina bifida site was healed completely now, it was just where the flap of skin had been moved that needed to heal.

A few days later we went back to Brisbane to see the plastic surgeons and Faith was upset most of the way and cried a lot. The plastic surgeons were happy that the wound on her back was healing slowly but well. We were told just to keep on going with what we were doing. It was a long day but we successfully made it through and were very happy to get home. Faith is our first baby so lack of sleep is something we both expected but she was always restless and cried so much. We got go to the sleep and feed clinic and discovered that Faith had a uncoordinated suck and swallow so even though she looked like she was feeding well, she wasn't getting much milk. We tried bottles and holding her cheeks together to give her some support and she sucked like crazy. Our baby was hungry! I felt terrible, I was trying so hard. Breast feeding was over and expressing again begun and bottle feeding was the way to go. Whatever is best for Faith. Expressing, bottle feeding and caring for a baby. Crazy times.

One day when we were on a play date and I was holding Faith, the little boy we were visiting said, Faith has a lemon shaped head doesn't she and I said, we all have different shaped heads, yours is like an apple. We are all unique. We celebrated Faith's dedication with our church family in December and had a lovely BBQ lunch afterwards. It was really special for our friends and family to see Faith and how she was doing. Faith wore the same little white dress with the intricate details as I wore at my dedication, that was special. It was nice to have these little bright spots in our calender with something good. As most days were not good at this point. Faith clings to me and doesn't like to be held by many others but she loves to watch what is going on. She was also getting quite picky on who was to give her her bottle, it was only my husband and I.

Faith seemed like she was in pain as she pulled her legs up a lot, it was hard to figure out what was going on. We were also a bit concerned as Faith took so long to feed, we would sit there for sometimes an hour feeding her. The uncoordinated suck and swallow seem to cause her problems. At other times she would drink the milk really fast and sometimes she would vomit it up. I wish that the hospital had picked this up so we could have figured it out before we left. Time passed and we had horrid nights and the occasional good nights. We didn't go out much as Faith never seemed settled. By December, life still hadn't improved and we started noticing a twitching in her hand and particularly her thumb and the sweating was still profuse, all over her body. Infant's friend syrup seemed to help a little with any wind pain but not much. We saw our other friends with the same age babies not having so much trouble and wandered what was going on with Faith.

On this particular day that we noticed the twitching, we contacted our local pediatrician and he suggested that we should do some tests to see what was going on. A EEG was conducted and it came back clear. An ultrasound of Faith's head was done to check if the shunt was working and it was fine. But still no success. Faith was admitted to the local hospital for observation. The doctor decided to put her on Tegretol and see if that helped. Amazingly it did and we saw a marked improvement in Faith's health. But what was causing these focal seizures and what other investigations were going to be done. We ended up back in hospital a short time later with seizure activity. It generally happened in the morning, Faith would get so distressed and scream and pull her legs up in such intense pain and then her foot would start twitching and she was covered in sweat. All we could do was hold her close and do our best to comfort her. The local hospital had no idea what was going on and was not much help. I remember one nurse saying, just give her a bottle and it will better, but a bottle wouldn't help with a focal seizure. The paediatrician called the neurologist in Brisbane and they put her on more medication, Keppra this time. It didn't seem to help and we thought we need to get to the source of this problem not keep giving her more medication.

We had a trip to the spina bifida clinic in Brisbane and saw a urologist who said that Faith was retaining some wee in her bladder but didn't think we should catheterize just yet. We were keen to see the neurologist as Faith still had these terrible focal seizures in the early morning. It was decided a MRI would be booked for January to look and see if the Arnold Chiari ii malformation was causing this problem. In the mean time we just have to make do. We were not sure what was going on but Faith was not enjoying life she was either vomiting or in such distress nothing would help. The orthopaedic surgeon saw movement in her legs so that was encouraging.

Christmas week was the best Faith had ever been and maybe we were turning a corner. We just wanted a quiet time as we wanted to enjoy the peace but it wasn't to last. New Year's Eve she got worse, this foot twitching and pain or whatever it was got worse in a different way with a new intensity and we knew it had to be something serious.

Our first days together

Day 2 - The social worker was right, I did crash and hard. If this had been the way I had imagined it, friends and family would be visiting and admiring the baby. Instead, neurosurgeons came to say that the surgery would be done in the morning and they would come and speak to us as soon as possible afterwards. So as fast as I could manage we headed to NICU and sat with Faith. We couldn't hold her as she still had a breathing tube but we could hold her hand and talk to her. The time had come for Faith to be taken to the children's hospital for surgery, I shed some tears as she went. It was all feeling like a dream, surely this isn't happening. I headed back to my room where I was told that the next morning I was to be discharged. This was to much, I could barely walk and it wasn't like I was going home. I would have to walk quite a distance back and forward to the hospital to see Faith. The social worker intervened and I was able to stay another night. I think what I found hard was I under the impression I would stay nearly a week which would mean I would be nearer to Faith.  Also to be able to recover more quickly but that wasn't the plan. I was sore, tired and life felt so strange. I was expressing milk with a picture of my baby and 24hours later still no cuddle.

There were some nice surprises my mum and dad brought me delightful flowers and a it's a girl balloon and my husband's work sent beautiful flowers and a cuddly pink teddy bear. It brightened the room and made it a little more cheery.I received encouraging and congratulatory texts from friends and family.

That night the neurosurgeon said that the surgery went well and they sealed the spina bifida and the plastic surgeons shifted a flap of skin to cover the hole. Apparently this was easier than a skin graft. I trusted their judgement as I didn't know about these things at this point. We were then able to go and visit Faith and sit with her a while. As she was so sick and attached to tubes, machines, and oxygen we were not able to do any care of her just sit there and watch another care for our baby.

Day 3 - This day brought unexpected challenges, Faith's head circumference was getting bigger and this meant that the neurosurgeon's had to take her back to surgery to put in a shunt. She had only been to surgery the day before and back again she went. I remember signing the consent forms and feeling dreadful. The surgery went well and the doctor's were happy. I remembered he said we will do everything possible to have your baby back with you soon. We understand this is hard. During the night, I had some pain so I had some pain killers so I was really drowsy and I awoke with a start and the nurse was wheeling in a baby! She was saying I am sorry I had no luck trying to settle him. And I said, Faith? But then realising the nurse said he, I said you have the wrong room and she apologised. For a second I thought it was Faith (knowing deep down it couldn't be, but still hoping). Then I went back to sleep with teary eyes and a heavy heart.

I was discharged and wandered down to see Faith and the nurse said, would you like a cuddle and I said yes yes please. What excitement! But my other half wasn't there and I desperately wanted him to be. I couldn't wait and the nurse reclined me in the chair and placed Faith on her tummy (as she wasn't allowed on her back) I had to be so careful of her back and her head. Wow, it was wonderful. I could feel her heart beat and she just lay there and went to sleep.  The nurse took photos and I was so proud. That night when hubby came in he also got to have snuggle with faith and it was a wonderful sight. Surely, we are getting closer to going home. 

A Poem Shared - Welcome to Holland

How is the best way to describe my life now and how it might have been. I want to share this poem with you that I found. 

Welcome to Holland

By Emily Perl Kingsley, 1987. All rights reserved.

I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. 

It's like this...... When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place. 

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned." And some of that pain will never, ever, ever, ever go away...because the loss of that dream is a very very significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland!

A New Life

'For you created my inmost being; you knit me together in my mother's womb. I praise you because I am fearfully and wonderfully made; your works are beautiful, I know that full well'.

Psalm 139:13-14

I stood and looked through the sliding doors. My heart leaped and I felt the baby move. Still marveling at a life growing inside me. In the next few hours I will have a baby girl or boy. A new life! Packed and ready we knocked on the hospital admittance doors and a kindly nurse came and let us in. She showed us to a recliner to wait. Let the admitting process begin! I was measured for compression stockings, weighed and met with the anesthetist. I was to have a spinal tap, the name in itself sounded scary. This was really happening. I awkwardly changed into fashionable surgical gown and stockings with the help of the nurse (otherwise I might have lost my balance). I was feeling huge. The outfit was just lovely (not) and we were shown to the operating theater waiting area. My husband was shown to a place where he could get changed into his surgical outfit too. Very attractive (I think he looked rather cute in his scrubs). We sat in the waiting area. Waiting, waiting and then another couple sat down. I remember seeing the lady holding a little hat for her soon to be baby. I then thought, I didn't bring one, I didn't know! Why didn't I know!

Just when I least expected it, my name was called and in we went. I was quickly introduced to doctors, nurses and had to get into a position for the spinal tap to be performed. It was all happening so quickly and it was beginning. I had to lay down on the bed while the spinal tap was taking effect. It was the strangest sensation. The numbness slowly moving up my legs right up to my arms and chest. The doctors were already starting to organise the operation. I then had the worst nausea. I mentioned it and it was gone. So quick. What an effective medication. Both my arms were strapped down, one for blood pressure and the other for a reason I can't remember. I felt quite trapped with no feeling in my lower half and my arms strapped down. This was really going to happen. I met the team who were to look after the baby when he/she was born. I begged for the opportunity to hold the baby soon after his/her arrival but they said they didn't know but if it was possible they would let me. I so desperately wanted to hold my little one.

It had begun and within a few seconds, they were lifting up a baby for me to see and it was...drum roll... A GIRL...I had always felt that it was a girl. She had jumped and kicked when we watched girly TV and I just knew but I didn't what to say in case I was wrong. I read the old myth about the baby's heart beat being high if it was a girl and I was right. My husband thought the same too. A GIRL. Praise God!

She couldn't breathe on her own. She had to have a tube down her throat to help her breathe. My husband went to be with our little one and hold her hand. She grasped his finger. It would be many years until she could grasp a finger like that again. 

We named her Faith because it was faith that sustained us through my pregnancy and faith that will keep us going too. I wish I could have been there too. They put a little hat on her head too which I never saw again. I just have a photo of it. The anesthetist's assistant was madly taking pictures for us so we would be able to remember the day. Those photos are a great treasure, with such mixed emotions. 

The next moments were a bit of a blur. They wrapped our little one in a cling wrap material and she was taken away to the neonatal intensive care unit. I was sown up and taken to recovery. Considering what I had just been through I felt pretty good. All I wanted to do was to go and see little Faith. But I had to wait a few hours. 

At last, I was taken in my bed to see Faith, I leaned over and held her hand. I wanted to cry. I whispered some kind words to her and that I loved her. I was taken away from her again. 

It is an incredible feeling that this little person that I just met that came from me, and that I already have such a great love for her. Faith didn't have her mum and I wanted to be there and I couldn't. My heart ached. I was a mum of several hours and I hadn't held my baby or even be able to do the simplest thing of feeding her, holding her. I didn't put her first nappy on or her first hat. I wasn't the first person she saw. She saw a stranger. Oh, how I longed to go to NICU. I was taken up to my room. I was pleased I didn't have to share with anyone I didn't feel like explaining why my little girl wasn't with me.

I felt so good after the surgery. I was surprised. I was brought a meal and didn't realise how hungry I was. I received a visit from the social worker who said that many ladies feel really good the first day. She said I should be prepared for day two as I would probably crash pretty hard. I took that in but thought no I will be fine. My husband went and saw our little baby and sat with her for a while. When he returned the staff in NICU had printed out a photo of our little just for me. She was beautiful. She still had a breathing tube but I didn't see it, she was perfect to me. We also had a visit from the neurosurgeon to say that the following day she would have surgery to close her hole in her back (spina bifida). They said that at this stage they didn't need to operate for hydrocephalus as it wasn't currently progressing. They would just monitor Faith's head circumference.

I decided to give Faith the best start I could, I would express milk. At least this is something I could do. I asked the nurses about this and how I was to start and they said, just rest for now, you can get to it later. I wasn't sure I agreed, but I did. My husband was staying the night with me which helped and by then I was expressing every few hours. The exciting news of the night was that my nurse said she thought I could go and visit our little girl. I moved ever so slow, a little painful and hopped into a wheel chair. My other half pushed me to NICU. This was our baby, I found it hard to believe. So beautiful! She was doing as well as could be expected. She had a tube down her throat and was being feed by a tube. A very emotional and brain numbing time!

Back up in my room and with a little pain we settled down for the night. 

Tomorrow our little Faith would face surgery.