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.

Day 7 - In Hospital - Anywhere but here

You know one of the things I find really hard when we are away, life goes on at home, I may not be there but when I do come home, time has passed. My friends keep having play dates, kids go to school, bills still arrive, time passes and I know life has to go on but it is still hard not to be present. For a period of time my life is confined to hospital grounds where there is no real night and day, it is defined into shifts, hoping for a nurse with understanding and compassion, these are the things that dictate the mood for the day, making it easier to cope or crash. It is people like the lady at the hospital cafe who provides polite conversation bringing familiarity to the day (particularly when she has know me since I was pregnant), the cleaner who is thoughtful when your daughter is sleeping and she is vacuuming the room. It is the social worker who comforts the ever falling tears and the pastoral care worker who offers a pray of comfort and strength. The moment I find comforting in a strange way,  is visiting the cafe in the maternity hospital, watching the babies and their families leave. They look so joyful and happy and I cannot lie in that I imagine myself and wonder what it is like to hold your baby moments after he/she is born or to have family visit but I see their joy and I escape for a while and Faith loves watching the babies and people too. It helps both of us.

Beside me a mother has a heart felt conversation with her daughter, I can't see them but I hear the tears trickle  down their faces, my heart hurts for their pain whatever it may be. In a week we have seen above 8 families come and go in our room and being in such quarters you hear things, things you sometimes don't want to hear and there is pain that is far deeper than physical pain and may not be able to be healed here. Sadness lingers in people's hearts here, we are all here for a reason whether we want to be or not. There are kids who come here regularly and know the routine,  their are newbies who will come and go and forget those they met and maybe should have learnt something from and lives traveled. Then there is us, who come from a regional area and are sometimes lost in this big place and are trodden on, hurt and feel lost ourselves, we feel we are failing and falling and there is no one to catch us but somehow someway, we keep pushing on through this real life night mare and come out the other side hoping that we find our normality again.

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.   

Go confidently in the direction of your dreams!

Inspire Bohemia: Inspirational Words

Go confidently in the direction of your dreams! Live the live you've imagined. As you simplify your life, the laws of the universe will be simpler! Henry David Thoreau.

I love this quote and I find it inspiring. Over the last few months I have been thinking about what I liked to do before Faith was born. What were my interests? What did I do with my time and what did I think about? I then thought back to my dreams and aspirations when I was younger and it came back to writing. I love to write and sometimes I don’t know what to write about. The counselor I see suggested the book called The Artist’s Way, a course in discovering and recovering your creative self. The back cover says that it dispels the "I’m not talented enough conditioning that holds many people back and helps them to unleash their inner artist". The book tackles self-doubts, self-criticism and worries about time, money and the support to pursue the creative dream. I found the book at the local library and started reading. What first caught my attention was how there were quotes written on the side of each page.

Wonderful quotes like:

Straightaway the ideas flow in upon me, directly from God. Johannes Brahms

It is the creative potential itself in human beings that is the image of God. Mary Daly

What lies behind us and what lies before us are tiny matters, compared to what lies within us. Ralph Waldo Emerson

Words are a form of action, capable of influencing change. Ingrid Bengis

So you see, imagination needs modeling – long inefficient, happy idling, dawdling and puttering. Brenda Ueland

I shut my eyes in order to see. Paul Gauguin

I love journals. I always have one around writing all sorts of things but I thought I'd start afresh recording what I hope to be a process of change and renewed inspiration and help. Each morning as the book suggests I write my morning pages, whatever pops into my head. I am finding it very therapeutic. There are weekly tasks to complete and it has looked at self-doubts and past criticisms.  I am finding it has already helped me heal from words I hadn't thought had affected me when they had. There is a good change and I like it, I feel it within, just letting my mind float a bit and get past all the unnecessary bits and being more free. It gives me the feeling that I am letting go of past hurts and believing in myself more. One of the tasks in it is to write out affirmations daily and that in itself is a very positive experience one that I am finding is helping me believe in myself more and that I can achieve anything. So I continue on my creative journey in The Artist’s Way but also in my university writing course in publishing, writing and editing. What an enthralling journey I am on and I am loving every minute of it.

Where we are at!

Time has been flying past and Faith is doing really well, she got over her last UTI after a long course of Nitrofurtoin. Her eating has increased dramatically and she is looking fatter, haven't weighed her yet but, the plan is to do that this week. Faith has more energy and is drinking more water too so that will keep her hydrated. We have increased the pure cranberry juice on the advice from the Nutritionist and she seems to like the taste now so that is really helpful. At last we are weaning Faith off her last daily medication, Keppra, it is going slowly than we originally anticipated but it going which is the main thing. By the end of March she will have no more daily medication. We have seem her more alert, saying more word sounds and interacting even more. We have also started taking Faith to swimming lessons again and had her first one of the year last week, she went all shy, it has been three months so she has probably forgotten how fun it can be. She was a cuddly koala who just wanted to watch, not play this time.

We have started back at physiotherapy and hope to be able to go weekly if we can raise the required funds. We can see so many benefits just after a few weeks. The first week we were given different leg stretches for Faith and encouraged to leave her leg wraps on for longer than we had been. So we put Faith's leg wraps on when she has her midday sleep and then for other periods during the day so around 3-4 hours in total. At our last visit, the physiotherapist could feel the tendons stretching that needed to be and said, "you have been doing the exercises". We took Faith's Squiggles standing frame along as she didn't seem that comfortable in it lately and that is because she has GROWN in length. So, we lengthened the Squiggles standing frame and she now looks so comfortable in it and we have been able to have her in it daily and Faith loves it.

Our big goal is to help Faith build up enough strength so that she can sit up and to get her to that stage we have to get her comfortable rolling side to side and practised in tummy time. The ipad is a great resource in motivating Faith to roll side to side, though I did find she likes to attempt to log into the iTunes store and archives my emails. LOL. We have managed quite easily I am happy to say to incorporate rolling and tummy time into our daily routine and with Faith being so well there has been lots of good opportunities. It is exciting seeing her strength develop and it is wonderful to have such a supportive and encouraging physiotherapist part of the team to help Faith grow and develop more. With her growing I think it is time to take the Stingray R82 pram with us next week to have it refitted as she hasn't found that very comfortable lately. Since the Squiggles standing frame needed resizing I assume the pram would too. Exciting times!

Make time for yourself!

As a mum it is hard to make time for yourself but at last I have decided I do need time to myself too so that I can have different topics to talk about with others but bring something back into my relationship with my husband too. By making time for me, I think I will be a better wife and mum as I will be able to have more focus and I am already feeling more organised. My head space though still jumbled is sorted into a pile of different jumbles. Making time for me gives my brain something else to think about and if Faith is having a bad day it also gives me something to look forward too and escape to, even if just for a few short minutes every now and then.

My first step was getting some exercise something that hasn't really existed for me for a long time, except for the occasional walk, I wanted something more so I have started swimming in the morning. There is a indoor pool not far from our house so I am only out for about 45minutes but those 45 minutes are precious and important. I only go during the week as it fits better to our routine but I love it. I have conversations with different people and when swimming I think of different things or nothing at all. Sometimes I get great ideas but most of the time I just like the repetition of up and down the pool. I have been going now for 5 weeks or so and my stamina is increasing and I can swim more laps. Apart from my swimmers falling apart and learning the hard way, why I should wear goggles - I couldn't see after three days of opening my eyes under the water, I just like looking around while I swim, but the cloud I saw for hours after ward and the stinging pain, goggles became a urgent requirement. Swimming has been a wonderful way to start the day.

Another way that I have found for me for something at home any time of the day or night, is to begin reading a book called the The Artist's Way - A 12 week course in discovering and recovering your creative self, sounds exciting, I'll keep you posted on my journey. So amidst the craziness of my life I will keep remembering to make time for myself too.

Making sense of the craziness!

Sometimes do you look back at the past week and say how on earth did I make it through? Well, last week was one of those weeks for one reason or another. Each day I felt like I couldn't make it through but I did and I am at the beginning of a new week full of anticipation and expectation of something better than the last week. So I wrote the below when I was feeling extremely low and for some reason since I was in the midst of the just keep swimming week I couldn't publish it. On top of everything last week I got the some sort of bug and have been quite unwell, maybe induced by stress, who knows. The last few days have been better, days that plod on instead of dread each moment forward. I still feel unwell but I don't feel as lost as I did.

Last week,
 
What do I want to say? There is so much but putting some thoughts into words sometimes eludes me, if only I could print my brain, it would be all the better. Today I was reading a blog about pre-toddlers and how they waddle around and their creative interpretations of the world. It also spoke of their transformation from baby to toddler and how amazing that is. It is amazing to watch a baby develop reaching the 'milestones', learning to crawl, exploring their world and climbing on everything. Sounds so exciting. As I looked for activities for my dear one and I find one here and there I get excited about showing Faith new things and activities. I feel like I don't get to show her that much sometimes with all the sickness and the constant feeding and teaching about food and the physiotherapy. I want to show her things, how much fun she can have. Help her learn to touch and pick things up. I'd like to feel like I have achieved something in a day with Faith so I now have a chart for the week outlining a daily activity, sensory, building, touch, quiet activities, lots of fun things and I aim for one fun planned activity a day at least. I am excited about having a plan so that when I am a bit overloaded I can just read the plan. So I am just trying to find the activities where I can see Faith explore, learn and develop. She is limited by not being able to sit up or crawl so I am really trying to be her hands, her legs but it is hard and I do find it tricky.

Just for a moment think how your toddler plays, running or crawling around, discovering new things. How does it feel to you? But to me, I see what I at this point cannot have and wonder will it ever be, what does it feel like, but I must hope that it will be, and for now this is my task. I don't know what it is like to have a toddler though I have one, a very special one whom I love dearly, I am just trying to make sense of my world and what it is and what it is not, but I am not looking for pity I am just trying to make sense of this craziness and this path I am on! Of course there is joy and that's what I must hold onto.