Planning Faith's 2nd Birthday Party

This week Faith turned 2. Wow! Last year on Faith's 1st birthday, I couldn't celebrate, yes I am blessed for her arrival but to me it was a reminder of that day my baby was taken away from me, the day I could no longer protect her from the world, the first time we were separated and I couldn't comfort her first tears or see her first sleep or even feed her, yes it still hurts. She spent her first 6 weeks in neonatal intensive care and I couldn't stay with her. I spent hours and hours a day by her side but felt I didn't know her, I didn't know what happened during the night I wasn't in control of feeding or anything. I felt I had to fight to be involved. Faith was very sick so I found Faith's 1st birthday a day full of sadness and emotions. It didn't help that she was sick then as well and it wasn't until the end of 2011 that we started living again and going out, doing fun things, being a real family, it was because at last she is well. Praise God!

Faith's goodie bags for girls and boys! Such fun!

So here we are, Faith's 2nd birthday, this year I feel happier. My darling is well, she still has lots of catching up to do and bad days, but she is gaining weight and interacting with us. There is so much more hope and happiness. She generally sleeps through the night and has a long day time nap, she is settled and generally content. My mum said to me oh think about 2 years ago and her wonderful arrival but I said, yes it is wonderful to have Faith but I don't wish to think about that day 2 years ago, I want to concentrate on how well Faith is now and how beautifully she is doing now. So, we decided that we should celebrate Faith's birthday and tomorrow we will be having a birthday party for Faith. We have invited her little friends and their families. I made little cup cake invitations, I had so much fun making them. We have planned yummy food, honey joys, chocolate crackles, fruit, mini sausage rolls and party pies, spring rolls, veggies and dip. While the parents enjoy chatting, the kids are going to decorate cup cakes. When I was thinking about what we could entertain a bunch of near 2 or just over 2 years old, I thought about what would be good for Faith. Food, of course. We are trying so hard to teach Faith that food is friend not foe so why not decorate cup cakes. Lots of kids playing with their food. Perfect! We will all sit outside on the deck, where we can hose the deck off when finished and maybe the kids, just kidding.

I must admit that even through all the fun preparing decorations, food and invites, I think there will be those tiny, fleeting moments when I see the other little ones sitting up, crawling and walking and long for Faith to be able to do at least one of them. I know she will get there but it doesn't lessen a tiny bit of longing for my little one to sit up, crawl or walk.

Some great cheap items for Faith's goodie bags

It has been really fun preparing. Faith and I made the honey joys yesterday and today we are making chocolate crackles and I am going to attempt to make a doll cake. Never made a cake that big or fancy before. We went shopping for items to put in Faith's goodie bags that we will give the kids when they leave the party. It is going to be fun! When I was growing up my mum and dad always had parties for me. I remember the pool cake as I loved swimming. My mum and dad made my parties so much fun and so special. When I was little I would get so excited and then end up in tears as I got so excited. I wonder if Faith will be like that? Anyway, what could be better than celebrating such a precious life!

Is it time for home?

I figured the best way forward was to keep myself to a routine and this structure would help me manage my feelings of loneliness. I headed to the dining room to cook my dinner and I noticed the ladies who were alone and the couple/families together. One family was sharing ice cream with another little boy and I thought how nice to see them sharing. I longed for my best friend's company. I had a quick dinner and headed back to my room. I set my alarm to wake so I could express milk overnight and went fast off to sleep. My routine was to get up really early, have an early breakfast and make it to the NICU for the change of shift so I was there for handover. This is what I did each day. I didn't think that I could make it by myself but I did and it wasn't long until the weekend approached and my husband would return. We spent the weekend together visiting Faith and enjoying having each others company again. It was nice to have someone to share with and talk to. But again the time came when hubby drove off in the distance and I was alone again. Faith was given this big homemade pinkish cat and it was so cute. It folded out into a pillow. I sat it on my bed and it made me feel like I had a little bit of home with me.

The neurosurgeons were happy with Faith's progress and were happy for Faith to go home but the wound was what was now keeping us in the NICU. There was talk of sending Faith to the Children's hospital which would not only mean out of NICU but I would be able to stay with her 24hours a day and care for her. At first I was apprehensive as I would be leaving my safe zone and starting over somewhere else. But the exciting part was I would be able to care for Faith. I could see this as a positive. The babies ward didn't have any available beds so we would just have to wait. The week past and my husband was to return. We also got the news that the babies ward had a bed for Faith and we were being transferred. Wow, how exciting. So just as my husband arrived we were moving to the children's hospital.

It was so different, just like a normal hospital, not like the mother's hospital at all. I suddenly was thrust into the full time care of Faith, for the first time.  She conveniently pulled out her NG tube, so I would be now breast feeding. Wow, what a change. This also brought the challenge that Faith was expected to sleep on her back but she had never done this and I wondered how she would settle. It wasn't possible anyway, as the wound was still serious but it was strange how the nurses just expected her too. The VAC machine was still on and the majority of the nurses had no idea how to work it, it appeared it was up to me. My first night there was a disaster, Faith barely settled and I had had no sleep and by the next morning I was sick, I had caught a cold.

Faith was having bottles when I was not there so I thought it might be best though I felt so much guilt not to stay that next night. I didn't want to give the cold to Faith or any other babies. My husband said that it was a good idea as I needed to care for myself during this time. I felt horrible and felt that they don't know her and how are they going to look after her. The next day, I anxiously ran over there in the morning and was feeling better. As we were past our maximum stay time in our accommodation we had to move out so my husband stayed and relocated our things to another temporary room until other accommodation could be found.  When I arrived, they were using the wrong teat for Faith's bottle and they had lifted the VAC machine above her to sit on the table, it was alarming. The VAC machine is always meant to be kept below the patient. I asked how long it had been alarming for and the nurse said when she had started her shift. They didn't know what to do with it. If it is alarming it needs to be fixed and if it cannot be fixed, it has to be taken off the patient as it can do damage when it isn't working. I was so annoyed. They should have called the plastic surgeons but as it was a weekend they didn't. The plastic surgeons came in unexpectedly and fiddled with it and it worked again but only for a short while and it alarmed again. Oh, so frustrating. One of the nurses realised I knew what I was talking about and so we took the VAC dressing off. I said if the dressing is off and it is just being changed daily this is something that I can do at home and there is no need to be in hospital. She agreed with me and contacted the plastic surgeons. It was the weekend so to get discharged on the weekend is a challenge. I managed to get Faith weekend leave, for us to return each day and we could stay at our accommodation the rest of the time. Our accommodation situation was a mess, it was meant to have been re booked but an error occurred and we had to keep shifting rooms which was tedious. The staff couldn't care and didn't offer a hand.

The exciting thing was we were taking Faith for the weekend, our first night alone with her and no nurses. It felt so strange. We carried our little bundle across to our room and settled in. She immediately had a sleep. So beautiful seeing her lying there. My Aunt and Uncle arrived with a porta cot, this was exciting. Night time came and Faith was so distressed she just wouldn't go to sleep. She wouldn't sleep, she didn't seem to be feeding properly, minutes turned into sleepless hours. We had no idea what to do. We couldn't go back to the hospital as there was no lactation nurses on during the night to provide advice. So we thought the best idea might be to try a bottle, maybe she was confused. So we gave her a bottle and off to sleep she went. Since we had been moved from the mother's hospital to the children's we didn't have that chance for Faith and I to be together to make sure she was feeding ok. So Sunday night came and it was slightly better.

We went back to the hospital on the Monday and got the all clear from the doctors. The plastic surgeons wanted us to come back the following Friday for a wound check. It had also be arranged that we would see a wound nurse back home. But this was true? After 9weeks we were going home! Faith was 6weeks old and we were heading home. It is true, yes, it is. This was the moment we had been waiting for. Praise God! It was late in the evening when we finally got the car packed and the all clear from the hospital but we were off. Homeward bound!

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 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...