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.

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!