We make our own normality

We make our own normality

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

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

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

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

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

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

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

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

---

Eating is meant to be fun!

We met with our local speech therapist this week and she thinks that it would be a good time to start offering food again. We have had a break from offering food and have been sharing whatever food we are eating with Faith. We have been allowing her to play with it, poke it, push it, whatever she likes to try and get her used to food and learn that food is a friend not a foe. She hasn't grasped any food yet but she has had chocolate, Vegemite and yogurt on her fingers and some of it has made it to her mouth to taste. She has been taking little sips of water on occasions but not much as she just shakes her head. Faith needs to learn to hold onto a little bit of food and put it to her mouth but she first needs to learn how to grasp better. Faith can grasp her stacker cups, she pulls them out and if we hold a cup she can put the smaller cup back in the bigger cup. She is much better than she used to be, but it is a very slow process. Faith has definitely improved since we got the Stingray R82 pram, the tray on the pram gives her more opportunity to explore what is in front of her. Before Faith would spend so much time lying on the floor or sitting on the lounge and now she sits up her pram surveying the world and taking it all in.

Since we have been a little stuck for a food routine and with Faith's eating the speech therapist thought maybe starting a more definite food routine might help. Some ideas were

Breakfast

• cereal 
• strip of toast
• a small chunk of banana

 Lunch

• Strips of avocado
• cruskit biscuits
• pieces of soft cheese
• well steamed vegetables
• scrambled egg

Other ideas were 

• continue to offer water from the sippy cup (we have always been doing this) but we could try using a different colour sippy cup with either juice or flavored milk.
• continue with oral play to encourage Faith to put toys to her mouth
• keeping the same food for a few days so she has a chance to become familiar with them.  

We are happy to try anything and give all ideas a go. One of the ideas to offer a bowl of cereal when we have our cereal is worth a go, it would be good to try and break the current morning routine. It is so tricky in the morning as Faith usually vomits first thing or if not then shortly after we give her her zymil milk, we have tried different combinations and nothing seems to stop the vomiting. The last few mornings I have tried offering the rice cereal (as she is still on pureed food) and she either shakes her head, buries her head in her shoulder and starts moaning. On Thursday I tried all day offering food and playing with food but with no luck. In the afternoon Faith had a huge vomit and I was so discouraged. After an hour or so, I thought she must be so hungry so I offered her some pureed food and not only did she gag, she had another big vomit. I felt like such a failure, we just don't seem to be getting anyway.

On Friday it was pretty much the same, then came Saturday and no progress again. I have only just recently came across the babycenter forum for spina bifida and it is amazing, at last I have found a group of people who are experiencing the similar changes and have such encouragement and advice. It means so much and even reading the other posts are helpful. It is good to have a forum that I can go to for help but in some circumstances relay my experiences in the hope our experience might help or encourage someone else. Now, it is Sunday and early this morning we did have a tiny break through. I gave Faith her bowl of rice cereal, I tasted some and I ate my toast while playing with her food. I chose a rice cereal with no taste I thought why not try going right back to basics. I didn't offer her any with her spoon, as spoons don't seem to help right now, so I rubbed some rice cereal on her lips, I didn't make a fuss just kept eating my toast and she started making chewing sounds. She didn't gag, didn't vomit. Faith ate the tiniest bit of cereal. Wow! I hope this is the beginning of eating even if slow. I wanted to try more but thought better not and instead gave her little sips of water. Success! 

Spina Bifida Clinic

Time passes as a blur sometimes and I find it hard to define time and stages as I just keep going and going. My brain is consumed by helping Faith move forward, to gain weight, to have feeds on time, to exercise muscles, practice speech and time passes. But, I must remember my husband too and make time for him as he is my best friend and without him I couldn't do this. It is so exciting Faith hasn't been in hospital since November (3months) and that is a big achieve for us. I hope it continues. It is so nice to just have a routine. To plan and follow through. Faith is sleeping pretty well at the moment but we are still having the challenge of UTI's. Will it not end? I only know two other families whose children have spina bifida and they live a great distance away. It would be so good to communicate with others who have been through similar experiences and know the day to day struggles and be able to share life with ideas on coping and moving forward more.

We made a phone call to the urology nurse and she spoke to the urologist and he said we should catheterize more frequently. I can't see the reason in that considering when we do catheterize there is barely 10mls of wee, in my opinion I think we should be stopping catheterizing as Faith's nappies are always heavy now. We have a spina bifida clinic in a week, so we can talk to him about it then.

I am not looking forward to going to Brisbane as not only do we have spina bifida clinic, Faith is having a sleep study, neurosurgery appointments and other ones too. So it will be 3 days of appointments. And we have just discovered another UTI so we have put her on antibiotics but the vomiting has increased and when we usually go to Brisbane and have such big days Faith's vomiting increases due to stress and lack of sleep. I think sometimes the doctors and nurses forget the stress it causes on the patient and then on the families. This is an ongoing concern we struggle to communicate across to the Brisbane hospital. It is wonderful they want to keep such a close eye on her but she is well now and since we don't live locally that needs to be considered. Since Faith is still on oxygen we have to take 5 bottles of oxygen with us so we are prepared. I am finding all the extra planning stressful. I am so grateful my husband is taking time off work to come with us.

We have booked hospital accommodation and we arrive after lunch, as Faith's first appointment is the sleep study that night so we don't have to be there until 5pm. Last time Faith spent the first hours there screaming from all the cords, wires and prodding so I am feeling quite apprehensive about this one. Faith might be 19th months now but since she has a UTI she is more clingy and wanting to be left alone. She has a temperature and increased vomiting too. We had a very helpful nurse who let us give Faith a bath first but then came the preparation of all the cords and wires. She cried and cried, there was nothing that could calm her. It took quite a while for her to settle, hours actually. Around 1am an alarm went and woke her up and that was it, we spent the next two hours with Faith happily chatting, it was beautiful to hear but it is a sleep study not a talking study. Around 3-4am Faith went back to sleep until 5:30am at which point they decided to finish the study and send us back to our accommodation; hopefully to get a few hours sleep before the days appointments started. Sadly Faith still needs the oxygen and will be reviewed again in 6 months. I knew it was a possibility as Faith hadn't gained much weight but I had hoped and I will continue to hope.

When we were just about to leave to start the days appointments Faith pulled out her NG tube which of course meant we had to put it back down and run late for all our appointments. The exciting news is that the spina bifida clinic went really well and all the doctors were happy that she was starting to progress now. She did spend the entire 3 days vomiting off and on.  A couple of the highlights were no more catheterizing. We were to catheterize 1 a day for a week and if the wee continues to be in small volumes then, ready for it, no more catheterizing. Yay!!! The neurologist said that we can start really slowly weaning Faith off some more medication. She has been on so much so we are very pleased. The other exciting news was that Faith is to get AFO's, at last her feet are bigger enough. And when that all goes well we can look at a standing frame. Love the positiveness! Usually spina bifida clinic doesn't give us good news, so this is wonderful! What exciting days to come!

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!

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!

The Recovery

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

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

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

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

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

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

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

Decompression Surgery

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

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

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

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

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

Waiting for Decompression Surgery

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

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

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

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

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

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

Home!

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

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

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

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

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

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

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

Shunt Malfunction

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

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

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

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

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

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

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

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

Our first days together

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

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

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

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

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

A Poem Shared - Welcome to Holland

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

Welcome to Holland

By Emily Perl Kingsley, 1987. All rights reserved.

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

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

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

A New Life

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

Psalm 139:13-14

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

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

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

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

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

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

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

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

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

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

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

Tomorrow our little Faith would face surgery.

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...

Finding Normality

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

I returned to work and began to do most of the things I used to and in my mind it was going to be ok. My visits to the local hospital were not pleasant ones, I was consistently told that my baby had spina bifida and arnold chiari because I didn't do this and that and it hit me very hard, all these myths were told to me, doctors were the worst. I would concentrate on that each visit I would hear the baby's heart beat and that was always a comfort. It was hard to ignore the comments but I had to choose my fights for the baby's sake and my own piece of mind. I did cry and feel overwhelmed every time I went to the hospital, I generally went with a sense of dread. I had some nice midwives but I always had to go to the doctor's clinic unfortunately. 

Our trips to Brisbane included a routine scan and a meeting with the doctor. I always found each ultrasound scary as I didn't know what they might find. In the early days there was no sign of hydrocephalus so that was encouraging. I got bigger and bigger and I loved feeling the baby move and kick. It gave me such delight. A couple of my friends were pregnant so it was great sharing our pregnancy journey together even though mine was sightly different.

I didn't do much research into spina bifida and arnold chiari malformation as I knew what I needed to know for now. The way in which our family and friends dealt with the news was very different. Most of them just wanted to be there to support us in any way possible. Others wanted to know what the outlook for our soon to be little one was. But how are we to know, every situation is different and the body responds differently too. I think that is what I struggled with most was those sort of questions. To me why look to what may be but look at now and the positives for now and deal with the future when it comes. I never minded answering questions about spina bifida but asking specific questions relating to the unknown of precious baby, I didn't see any sense in it. I think my husband dealt really well with the hard questions, he shielded me from it and at that point it was what I needed.

Now to the fun part, my mum organised a baby shower. As we didn't want to know whether we were having a boy or girl (we couldn't find out anyway as when our scans were done the little one kept turning away) we went for all the pastel colours. We had it at our house and this certainly brought so much fun to the baby planning and future. So many people came we had a full house. It was so much fun, we had games, food and everyone was so generous. The little bub got so many practical, fun and beautiful presents. By the way, so did I. I was spoilt We celebrated and it was such a joy. My husband and I painted the nursery and got furniture, all the little clothes washed, pressed and folded awaiting the arrival of bubs.

The day that was to come that I dreaded was the day I would leave my family and friends behind including my husband to relocate to Brisbane to await the arrival of our baby. This was so hard, so many tears, I felt this isn't the way it's meant to be. I wanted to be nesting at home. It was four weeks before my due date and suddenly my new found normality was gone again, a long time to return.

And to Brisbane I went...

Information Overload

Our first antenatal visit we got introduced to our case worker who would organise everything relating to my pregnancy. She was a happy and bright person. We had normal first antenatal meeting with the midwife, family history, type of birth, it was quite fun and I felt normal and was treated so. I also got the mother to be bag of goodies which was exciting. Then the scary bit came, another ultrasound, this was our first one at the Mother's hospital and the environment was quite different. It was quite a large waiting room full of pregnant women and children reading magazines and snacking, a fun past time for pregnant women.

I was called in and I must admit though the lady conducting the ultrasound was friendly she happened to be a student (I found out later) and after the ultrasound began she disappeared for a while making me extremely anxious and close to tears. She would come back and say I just need another opinion and immediately I was taken back to the first ultrasound I had in our home town. Fear was rapidly engulfing me and my other half is trying to calm me. Eventually, she came back in with a man who started to go through that the baby has spina bifida and a lemon shaped head which is most common with arnold chiari malformation and how they were concerned about hydrocephalus developing. He just went on and on and it was all too much. Then I realised why he making his point so hard and it was because he wanted me to have amniocentesis .

Amniocentesis is a procedure used to diagnose fetal defects in the early second trimester of pregnancy. A sample of the amniotic fluid, which surrounds a fetus in the womb, is collected through a pregnant woman's abdomen using a needle and syringe. Tests performed on fetal cells found in the sample can reveal the presence of many types of genetic disorders, thus allowing doctors and prospective parents to make important decisions about early treatment and intervention.

I understood the reasoning behind this procedure but it wasn't going to change my decision in keeping the baby and I think that is what the point was without them saying it. I remember he was such a hard doctor and no bed side manner at all. I think there comes a point when a doctor needs to decide how much information we needed to hear and then give us the opportunity to ask for more information. Instead of forcing all these thoughts in my mind. For me I just needed to know what to get through to the birth not all these what ifs. We decided no was the answer for the amniocentesis but that didn't stop them for pressuring us right up to the birth. After the ultrasound I was frazzled, the case worker had finished early so we were sort of just left with this information and struggling to process it.

We spoke to a kindly obstetrician and he said that I should have a c-section when the time comes. I was to be checked each fortnight at our local hospital and come to the Mother's for checks once a month. I explained that the local hospital didn't want anything to do with me as the pregnancy was too complicated for them and he said he would take care of that. And he did take care of it. We got a phone call on the way home from the local hospital asking us about what appointment times suited as they had received a phone call from the other hospital telling them that they would be sharing the care for antenatal appointments.

The day was long and we barely got to eat with so many appointments, though overall the experience was a positive one we were left with many questions that I know I didn't want answered just yet and so many possibilities. My brain had so much information cycling through it. We just sat in silence on the way home. I remember we were listening to Sons of Korah and the song that was playing was Psalms 139, the tears ran down my face but at the same time I felt it was all in God's hands and he was taking care of it all and even though I felt like I was in a dark place he would be the light. This was the first of many times I felt in a very dark and lonely place. And so finding normality within my pregnancy, planning the arrival of our little one, with the news of what I had to face in the coming months, returning to work, meeting with friends and my pregnant friends I wondered how I was going to find this normality.

But really what is normality?