All things green week!

It has been so long since I have posted a blog. I keep thinking about it and it just doesn't happen. I have just been managing to get myself through each minute and second but I wanted to share some fun activities we have been doing.

We had a trip to Brisbane last week, hubby had a course to attend, so we kept him company exploring Brisbane city while he was at the course. While we were away we played and learned about all things green.

With so much going on it is sometimes hard to know what fun things to do with Faith. Faith's speech pathologist suggested we make up a bag of her toys for each week and pick a theme. Then, we can help her speech develop and learn something new each week.



In Faith's week of green fun activities we had:

• Book - Spot Bakes a Cake (it has a lovely green cover) by Eric Hill
• Book - The Very Hungry Caterpillar by Eric Carle   
• Book - Sign & Singalong - Teddy's Bear, Teddy by Annie Kubler
• Book - Frogtastic!
• The Ants go Marching 
• A green frog puppet
• Three bunnies in a green basket
• Green balls
• Green lyra material
• Green cars
• Green pretend fruit
• We include flash cards too.

The plan was to do some craft but it was a bit hard to do that away. Will do that with our next themed week. We did look at what green things we could find in the city.

We are finding this technique is helping Faith's speech and learning. Along with expanding our skills in key word sign we hope we will be able to better understand Faith's needs and wants. She understands so much we just need to keep those small steps forward.

What to say!

Some life journey's are worth the climb to the top

I have been thinking of what I could say about where we are up too particularly in regards to my little bug, Faith. This is hard to talk about as it is something I am not happy about and want to just keep pushing through each second and each minute with the hope of a happy ended at some point. Avoidance!

My heart hurts when I say Faith has her NG tube back, has had for 6 weeks now. Why? Because she wasn't able to eat enough orally to sustain her weight and with so many UTI's it was a uphill battle. But in saying that I think, no I believe, she could have done it if the hospital had helped us more when we were last there in regards to other options. They pushed and pushed for a NG tube and even when Faith drunk the formula they wanted it wasn't enough. We pleaded and pleaded but they gave us no other option, they were not going to let us go home without one. I am sad, I am angry, I am grumpy but nothing changes the fact she has one and if I could, I would go back and ask for other options and help. Yes, she is gaining weight consistently now, but there are consequences. For example:

Faith no longer sleeps through the night (sleep, sleep what is that?).

She has tube feeds every two and half  to three hours (it was two hourly so not so bad now).

We can't go in the car by ourselves because she rubs her nose and then vomits and the tube is coming out her mouth.

No longer can we go out in the morning, the formula causes tummy pains, all our outings if we are able, are in the afternoon (this isn't a massive concern to doctors as she is gaining weight and they can't find any allergies. How I miss the blended diet!).

A vomit at least once per day - caused by rubbing her NG tube

this list goes on.....

Faith's life is harder than it was when we had the NG tube in last year. But the wonderful thing is she is still eating orally but not much as the tube aggravates her swallow. She is getting stronger and putting on weight.

This all leads to the next BIG life change, on 9th May, Faith will be having a bard button surgically inserted. It means no more NG tube and she can then eat as much as she wants orally and then we can top her up through her button. So that is good but I do really really wish we were given other options. I don't feel comfortable with it but no one seems to offer us anything else. There is no second opinions due to where we live and we already travel 3 hours, but with a NG tube it is even longer to get anyway. It's in God's hands!

Hospital Adventure Continues - Day 9 and home!

Just had to share this image!

I find people watching a interesting past time in hospital. One of my favorite encounters was when Faith and I were heading to the lift and as we went in 6 or so older looking ladies followed. They seemed to come from no where, at first as usual, my mind is elsewhere, but something drew me in. I gazed up and I didn't just see some older ladies seasoned with salt but angelic looking ladies and while they fussed over Faith and in the moment or so that followed I realised they were nuns, heading to the convent. They looked so peaceful, kind and genuinely content. Just as fast as it began it was over and the nuns left, sayings God bless the little one. I will never forget the peace and calm I experienced when I was around them. Something I longed for in my ever changing situation.

Highlights of our day was a visit from the pastoral care worker and last week he had invited us to a Lent service and  we said that we would go not realising today's was to be held in the adults hospital and tomorrow was the children's. We got confused with the days (as time floats away in hospital) but decided to attend none the less. So off the 3 of us went, yearning for some peace. Today Faith, hubby and I attended a Lent service, never have we before but felt spiritually low so decided to go. As we sat in this small chapel nestled among the chaotic hospital we listened quietly and for those minutes that past, peace filled our hearts and I had peace even if fleeting.

Somethings are meant to be and we are meant to be in a specific place at a appointed time (serendipity if you will) and today was one of those moments. The lady sitting behind us was an old colleague of hubby's. The lady's  tears flowed like a waterfall and I wanted to do was give her a big hug, I could see the hurt and weight of her burdens as I looked into her eyes. She said she had a 11 week old daughter who was suspected to have meningitis but didn't know whether it was viral or bacterial yet. For a brief moment I remembered the pain of having a relatively new born in hospital and the fear that took over all logic and reasoning. We parted ways but as we knew her pain we thought of how in some small way we could help as others have done for us. So we left a small gift for her and her little baby. The next day as we returned to our room after one of our many outings to escape the ward we found a note and gift. It said your prayers were answered as the little one is improving and it wasn't what they feared and they were heading home. And a few days later we were home too.

A roadblock, trying to pass it!

Well, I didn't think I would be writing this from hospital but I am and as much as I hope to wake up and find it is a dream I do not wake and it is real. We came to Brisbane for a sleep study and it was our first big trip out with Faith's oral feeding. She didn't eat well that day because she couldn't eat the way she usually did. So after a long night we made it through the sleep and we awaited the results. Morning hours passed and we got a phone call saying the respiratory doctors could see us early and we were thrilled the sooner we could go home. The doctor had a grim face and added no she doesn't need oxygen anymore. The excitement and joy of this news was lost as my heart hurt and mind felt like I was entering a dreamworld, but no, this was real he said he wasn't happy with her weight. He said things that hurt to my core. He wasn't happy with what we were feeding her, nothing really, then the words that threw us, she looks to thin and she needs to be admitted to hospital and there was NO CHOICE. So many emotions ran through my mind, he was asking questions, all I could hear was NG tube and I was saying no, no, no, NG tube. He didn't get the message so with heart felt tears streaming like water falls down my face I spoke as firm as I could and said no NG tube and said why. My husband was as shocked as I was and trying to understand what was happening. How was this happening, she is eating and yes we were happy for help to increase calories and volume but surely no admission, surely not. But sadly there was no choice. I immediately called the Social Worker and asked for her help.

I have coped pretty good I think until this dark day that comes close to the worst day of my life, horrible things were implied and I might add were later proved  WRONG with blood tests. The doctors were wrong but no apology came. Yes, our little one was dehydrated this day and she is extremely anxious about hospitals which made the whole thing harder for her. Most of that day I felt that my heart was twisted and pulled and stamped on and will try to delete the rest for the hurt that it brings.

5 days later we are still in hospital and we have accepted their help with formula and have been allowed to keep partial of her homemade food, need something real inside her. I do understand that the medical professionals are trying to help and want was is best for Faith but they had missed alot of factors or rather were ignoring them. We will get back to real food but for now we do need some help to get her weight up and there is more but I need to ponder some more on how to write it and explain how it all turned to a road less traveled.   

Day 4 - No NG Tube - Coming home!

We are home, I am sitting outside on our deck with the cool breeze refreshing me and the little wrens dancing around the backyard and the nervous young Rosella attempting to gain the courage to land on the bird feeder while I sit on the deck occasionally glancing up and watching him. So we are home, it is different, it is strange, no definable routine, it must be created again, I even feel like I am in a bit of a blur or mist, waiting for someone to wake me from this very strange dream. But is it true, Faith doesn't have her NG tube and it is wonderful to see her free from it. We are home and she still doesn't have it. Yay! On approaching our street she said home a couple of times, the first words we have heard her speak in days. Then while putting Play School on for her to watch, she giggles and smiles, though only fleeting, I can see more life coming back into her body.

It still isn't easy though, Faith has no real sleep patterns and wakes around 3:30am - 4am because she is hungry, this morning she only had about 90mls of the blended diet and we tried putting her back to bed and I could see she wanted to sleep but I think she was developing a temperature again, a morning thing, and I was right, it didn't get to 38degrees but was high enough to make her feel unwell and grunt a lot. It dropped very quickly when I put a damp washer on her face. She ate more blended diet later totaling about 150mls in the morning. But that seemed to be it, she didn't want anything, no fresh juice of blended diet, her next decent amount wasn't until 4pm when she only had 50mls. I guess it is to be expected since yesterday she had nearly 800mls so maybe she isn't as hungry. We went to the Spina Bifida Hydrocephalus Association Christmas Party and it tired her out. She met Santa for the first time and didn't cry and got a lovely gift of some books and a funky bath toy. 

We didn't stay long and headed back home and I am very glad to be home but will miss the face to face contact with Faith's speech pathologist. We are going to talk every day and I will send her texts to keep her updated and we can brainstorm any problems and that is wonderful and very helpful. Her support is what has kept us going when we didn't know how to proceed. But back to now and that Faith hasn't wanted anymore food. We have tried different cups again but she shakes her head and if pushed brings her arm to stop us. I must keep reminding myself that Faith is in charge and she has to choose to eat and drink not be forced. It is just so hard when I know she must be hungry and needing food. But I have to be very patient and push on towards the end goal. So my plan is to create a new food friendly zone and a cup station for Faith so she can pick and see encouraing and inspiring pictures and words around. It also encourages me greatly to see quotes and encouragement around.

I don't know what tonight holds, I am hoping Faith will wake so I can give her some more food but hoping she can find rest to gain more strength and gain weight but I must not rush this is only day 4, though I feel months and months have past.

Hunger Induction - Day 5

So here we are in Brisbane at our apartment for 5 days to attempt to wean Faith off her NG tube. What a crazy day, being day 5 of the hunger induction program Faith is showing signs of hunger and we are trying to help her understand what hunger is what she should do if she is hungry. She is refusing all food and drink now. We headed to Brisbane this morning so we could take Faith to the Spina Bifida Association's hydrotherapy class, at home when we go swimming, it is just Faith, the teacher and I so we were excited to be part of class with other babies and toddlers. What a full on class it was, it was full of different activities to build strength in various areas and had songs and lots of movement. It challenged Faith on every level and it was good for her to be challenged outside her comfort zone but it was exhausting for both of us.  It was fun to be part of such a action packed class I wish we could come more regularly as it was good for her. Lots of practical and helpful ideas to take back to our class.There was even little ducks that had lights in them that Faith pushed back and forwards. We didn't make it it through the entire hour, I could see Faith was tiring but I was also feeling quite overwhelmed too. 

Faith didn't sleep very well overnight and rose very early, she was hungry I think and she was irritated and needed distraction and constant play time. When she is hungry in the morning she sweats all over but it settled after some water and later her home made blend. But I woke distressed too, I was second guessing what we were doing, my mind was consumed by doubt and fear, I know we are doing the right thing and Faith's NG tube needs to be gone but all the preparation and coming days suddenly seemed nearly impossible, there were a few tears but I had to keep going. The speech pathologist kindly asked one of the other mums if she would have morning tea with us and her two delightful daughters sat at the table near the pool and ate their lunch and though Faith was nearly going to sleep she tried to interact and when the little girl offered food I could see Faith wanted to touch as she reached out but was just too tired. It was good though.

We headed back to the speech pathologist's room a short drive away where there was a little place of heaven was set up with dolly's, teddies and a monkey were having tea and a play mat with the hungry caterpillar crawling around and toys and books were ready for Faith to have some fun. On the wall were quotes and words of encouragement like, 

No pressure

keep strong

relax

keep the Faith

keep swimming

life isn't about waiting for the storm to pass, it's about learning to dance in the rain

making a big life change is pretty scary. But, know what's even scarier? Regret. 

Your wings already exist. All you have to is Fly

With inspiring and encouraging words around it will help us keep going and remind us to relax and have fun as that is what it is all about.

We laid Faith down and with some relaxing music playing, she relaxed, chatted and eventually went off to sleep on the floor. It gave us a chance to run through our plan for the morning and of course the celebration of Faith's NG tube removal, tactics, strategies and of course the biggie that Faith have fun learning about food.

Checked into our 1 bedroom apartment, unpacked and make Faith's space and start to unwind my brain. Thanks to an inspiring group discussion with hubby and speech pathologist I am feeling motivated, encouraged and inspired that we can do this. There are so many people praying and God CAN do what seems impossible.The next time I blog Faith will have no NG tube! Bring it on!!

Food is friend, not foe!

Wow, what a crazy, busy couple of weeks, time is flying past and I wonder what I do each day, then I remember what is in each day and wonder how I managed it fit so much in, but it sometimes just goes into one giant blur. Clouds zooming fast through the sky with not a moment to lose. We had a flying day trip to Brisbane to visit the speech pathologist at the Spina Bifida Hydrocephalus Association and it is always such a pleasant, useful and inspiring place to visit. Our plan with the speech pathologist was to go through what we were currently working on, oral alerting, oral stimulation, sensory awareness and all of us learning makaton sign.  After which we were going to learn more about Faith's approach to feeding that the speechy had especially designed for Faith, working with what challenges we have and of course the distance issue. What an amazing program she developed! We are using strategies from the SOS feeding approach (Sequential Oral Sensory). The SOS Approach focuses on increasing a child’s comfort level by exploring and learning about the different properties of food and allows a child to interact with food in a playful, non-stressful way, beginning with the ability to tolerate the food in the room and in front of him/her; then moving on to touching and eventually tasting and eating foods. It is such a fun approach. We are not using the typical 'guidelines' as there is no one living in our local area that runs this program to help us so sadly can't run it the normal way with other kids and parents but not to be dismayed as a feeding approach was created just for Faith. We have session goals, medium goals and long term goals with our ultimate goal being Faith eating and no tube.

We had our first session, where I had prepared different foods, purees, hard munchables, ranging in colours and smells. I had never pureed just cauliflower before and what a strong smell it has to the luscious sweet smelling pear and we all wanted to devour on the spot. Foods are arranged in order called a food hierarchy, wow, so much to learn. Speech Pathology is such an interesting field, I am learning so much and enjoying learning too. Anyway, we followed a plan with certain guidelines. Faith tolerated the food in front of her, she didn't touch it but she allowed us to play with it in front of her and make a huge fuss, three adults having carrot sword fights, making faces, decorated cauliflower bouquets with sweet potato, fruit hand cream, flying saucers, all the manners at the table were gone. If Faith didn't want a particular food on her plate, then we covered it with a servitte so she couldn't see it. We all smelled the yummy food as it went around and talked about the flavors and scent. I am even more appreciating my awareness of texture, smells and taste. it is so easy for me to just eat what I would like and not think of how a certain texture or tastes, scares me, makes me uncomfortable or just freaks me out. Apparently Faith did really well for the first session as some kids yell and scream and protest but she sat watching, observing and wondering. The plan is to do the session once week and work up to more and also to have a family meal together so Faith can just watch and be part of the family fun at the table. I must admit I am excited, we have goals, we have dreams too but most of all, this will be better for Faith, this approach will work and will get rid of her tube and have her at least eating purees again.

We went to Byron Bay on the weekend to visit some family and as we sitting in the annex of their caravan, the wind blustering outside and the rain hoizontal Faith dipped her hand into my cool lime and lemon drink, she swished it around and then did again and again. Then of course, the little chubby hand comes right at me to say, I am clever mummy! We then explained to our family why this was a good thing for Faith to be doing and why we are encouraging food play over manners. With everything I eat I show Faith and one day she will see food as friend not foe...

Finding Normality....Again!

Well, here we are, Christmas 2011, we had a well Faith and more good days. I am feeling better about life and seeing Faith progress now is very exciting. We are still struggling with Faith's weight sometimes it might increase slightly then go down, so it is sort of stagnating. It is so frustrating we are trying so hard but with all the UTI's and Faith's normal vomiting it is very difficult. I talk to the Brisbane dietitian once a week and she offers advice. We met some family at a park the other day and one of them was wearing a hat and Faith said hat, very cute, a new word. Faith waves, says hi and hello and loves when we say dancing hands as that is what she does. One of Faith's favorite past times is reading. She spends so much time turning the pages, looking at the pictures and touching the books. Another really exciting development is when we say 'roll' to Faith she will turn the upper half of her body and we just give her a hand with her leg and she rolls to her side. YAY! Very exciting! We are getting out more and having fun days. I feel like we are just starting to live again.

We are still having problems with UTI's 1-3 times a month but we can treat them now without going into hospital. We seem to have more control of our lives and it feels good. We have tests strips so we can see whether Faith has a UTI and then we can start treating it while we wait the few days for the lab results to come back. UTI's give Faith increased vomiting, restless overnight, and high temperatures. We have found a local pediatrician and he is a good help to us. Due to all the UTI's Faith has had the urologists wants her to have a DMSA scan but the problem has been Faith has to be clear of a UTI for 12 weeks and that hasn't happened so we just keep rescheduling the appointment. At this point I can't see how we are ever going to be clear for 12 weeks. We have an upcoming appointment with the urologist so we will talk to him about it then.

Faith is texture sensitive not only to any new foods but objects and just exploring the world. It is quite a long process and we have to try and include a variety of objects that have textures so she can learn about them. Faith has little leg wraps now and we can see that they are helping keep her legs out straight as before she kept them like a coat hanger. As she always had her legs pulled up when she was in pain and now is it is what she is used to doing. At this point Faith is still unable to sit up and we struggle to find good seating positions for her. We applied for a pram and it has body support so she can sit straight and supports her head better but still allows for her to develop her head control. The pram comes with tray so she could play with her hands more but we haven't heard back about how our application is going with NSW Health.

Even though Faith still gets sick from UTI's and we still have bad days our good days are starting to outnumber the bad. This is so new to us and it is WONDERFUL! Faith and I have been going on play dates and it is really positive for Faith to learn about other kids as she really hasn't had the opportunity to do so before. It is fun to do something 'normal'. It has been good for me to interact with other mum's and not feel so isolated. As a family we have been going for walks together and even going out for a few hours for a trip. We pack up the oxygen and all the NG feeding things and head out. It is getting easier and we are adapting to doing a variety of tasks out and about. I know for me there came a point when I truly accepted that my life is different to what I dreamed of and that embracing this new life and discovering the beauty in it. I am not saying that it is easy, it is hard and I do have bad days but every step forward is so much more appreciated and noticed. By me not only accepting my situation I am helping Faith accept her life with special needs and allowing her to be confident and ready to take on the world. I want to give her everything that is possible and give her just as many wonderful and exciting experiences as she would have had had things been slightly different. There really is happiness for the 3 of us, but in saying that I still get quite emotional at times and find my world hard to handle and want more for my little one. But that is natural. Faith is a blessing to us. We are finding our own normality....again!

Oxygen, NG Tube Feeds and UTI's

We are home! We seem to be surrounded by cords, oxygen and now an NG tube. I try not to think about our situation too much as I start thinking about 'what ifs' and what things could have been like, the way I imagined it to be, but then I remember our beautiful blessing of Faith. God never gives us challenges we are unable to bare though I find that concept hard to fathom at times. Faith is talking a lot more and I love listening to her babble. Mama and dada are common words and my heart leaps when I hear them. I look forward to when she can tell us what is going on.

We have tried a couple of times to wean her off the gabapentin particularly when we have a good week but it usually backfires as she isn't ready and makes her symptoms worse. The doctors wanted us to try. So we decide just to leave it until she is more stable. UTI's are an ever present trouble and we have just about a week well and Faith gets another UTI. We can't seem to get them to stay away. Taking a daily antibiotic isn't an option as Faith has resistance to them and we need to have one of them that can treat the UTI. The best antibiotic for her UTI's seem to be nitrofurantoin, not even the IV antibiotics seem to work now.

We have had a few more trips to the Brisbane hospital with recurrent UTI's and Faith's seizure medications being reassessed. We are getting so tired of living away from home and not being able to enjoy Faith and her not being about to enjoy life. The vomiting has reached a new level, its uncontrollable. We take a chance and take Faith off the formula and NG feeds completely and put her onto pureed solids as she is doing so well at them now. After a few days of the solids she has started sleeping through the night which is a first, she is usually so restless and up and down through the night. Amazing! Loving the extra sleep. The gagging and vomiting has virtually disappeared and she is well.

At the end of November 2011 Faith has been booked in to for another MRI as before we took her off the formula the neurosurgeons wanted to see if the syrinx had returned and if that was contributing. Since she has been well, we really didn't want to have it done as her feeding is so delicate we didn't want to lose how well she was doing but we thought we better. The day of the MRI the doctors had a really hard time getting the drip in and in the end they inserted one in her head. I dislike this as it is near her shunt and it makes me so uncomfortable but we needed to get it done. The MRI report showed that the syrinx had collapsed, this is amazing as they thought this wouldn't happen. So having the MRI was good in that respect.

Unfortunately there was quite a negative aspect to the scan as from that day forward Faith's eating deteriorated. First, the speech pathologist thought it was just a sore throat from the tube used in the anesthetic, so we started blending the food and putting it down her tube and continued trying to get her to eat solids but no success. Another challenge we came against was when we were testing Faith's wee for a UTI we noticed her ketones were extremely high and this started happening after feeds too. Faith's body was in a state of ketosis. We got an urgent appointment with a metabolic specialist in Brisbane. Faith had lost 1kg in a month this was not good. Tests were done to see what was going on and it appears it was due to her change in foods and not getting enough energy so we were given a formula without protein in it - energivit. She seem to tolerate this well and we could see her getting stronger and less overall vomiting but we started getting this horrible vomiting and sweats in the morning. If only Faith was still eating solids.

Life is improving and we are starting to have more good days. Vomiting just in the morning is more bearable than vomiting all day so we are managing it ok. Christmas is approaching and we are excited that Faith might be well. I think our life is starting to change for the better.

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!

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?

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.

4 Weeks and Counting

I didn't know what the plan was for the arrival of our little one. It hadn't been discussed, all that was planned was for me to come to Brisbane and wait. Wait!

We arrived a warm Sunday afternoon. Unfortunately, our first contact with our accommodation host was extremely negative and we continued to have problems until the day we left which was sad. More stress we didn't need.  First thing Monday I met with a social worker and explained my concerns that I didn't have an appointment with a doctor for another two weeks and my c-section hadn't even been booked. I felt like I had been sentenced here and no end date to go home.

I missed my best friend (my husband), and thought how we should be experiencing the last weeks of this together. I just wished somehow it could be different. But it wasn't and I had to deal with it though difficult. I felt alone and I couldn't see how it could be eased. My mum was wonderful trying to cheer me up and even tried to smuggle a glass of milk into our "food free" rooms for my horrible and intense heart burn but she got caught. She shouldn't have had to endure the ridicule and criticism that host of the accommodation placed on her. All for her trying to ease her pregnant daughter's heart burn and so she did not have to go down the two flights of stairs to get it. Poor mum.  

I had a amazing social worker who actually spoke to the doctor and got a date for my c-section. Yay, a birthday has been picked for our baby! That at least gave me a date and I could organise for my husband to come and stay. He was planning to come a week before so we could have some time together and I couldn't wait. He also came each weekend and my mum stayed during the week so I wasn't alone and I greatly appreciated that.

My first scan after my arrival was disastrous. I had a doctor conducting the scan and he had a student doctor with him and they were dreadful. They discussed the conditions of spina bifida, arnold chiari and hydrocephalus which was fine. But, they went beyond that and started to talk about after the birth and the way he thought the baby was going to be as he/she grew up. This was not right, he didn't know the future and yes my baby did have have serious conditions but he can't speculate. I told him that and had a rather heated discussion about him presuming too much. I was a heavily pregnant woman and he was discussing my baby in a way he had no authority. I came out nearly in tears and went straight to the case worker nurse and told her and she was very sympathetic. She said that this doctor had that tendency and I wasn't the only woman he had treated this way. That shook me for the rest of the day.

I didn't have much to do so many days we walked to Southbank and sat in Cafe's to fill in time. It wasn't really a happy time just sitting around in a one bedroom room with a pull out bed pushed against the wall. But the days were ticking by and the day that my husband would arrive to stay for the arrival of our bub was so close. I couldn't wait. I had all these plans of fun activities we could do for that last week.

My mum had headed home and I was watching anxiously out the window for our car and there it was, I ran as fast as my little pregnant legs could carry and we ran into each others arms and embraced. My love was here at last. At last it was only seven days until the planned birth and we were so excited. We were taken to the Neonatal Intensive Care Unit  so we could see where our little one would be coming pretty much straight after the birth. They said that as soon as I would leave recovery they would bring me by to see our baby. It was very clean and such tiny little babies everywhere, it was a high security area so all the babies were safe. In my mind I had the ideal situation in my head that we wouldn't be here long and that we head home not too long after the arrival of bubs. I tried not to think to much about it but concentrate on getting through the next few days.

My other half and I walked the by the river and ate some yummy meals, checked out the maritime museum but at night it was an all too true reality that we were not going home soon.

The night before the birth I was apprehensive, excited and nervous.  I had this horrible fear that I was going to die. I don't know why but I guess having major surgery and after the doctor went through the possible things that could go wrong I was a little scared. I didn't tell anyone how I felt as I thought I was being silly. The morning of the scheduled c-section, I showered, packed and I was fasting so my husband went to the kitchen and got himself some breakfast. I was too nervous to be hungry. We were ready quite early and decided to walk to the Mother's and just wait.

So off we went to begin the next phase of our journey...