MRI

We drove to Brisbane for the MRI and it wasn't a fun trip, it was pouring rain and the rivers and creeks were raising but we had to get through and luckily we made it (it also happened to be the worst floods Brisbane had experienced). We rang to confirm our appointment and I think they were about to cancel it until we told them we drove all this way. We later found out we were the only appointment that day, the remainder got rescheduled due to the floods. We got there early as usual. Faith had to be put under a general anesthetic and the scan was going to take a couple of hours at least. She was going to be taken to the babies ward afterwards to ensure she recovered ok. If everything went ok we were free to take her back to our hotel. We had to stay nearby for one night as a precaution. Half way through the MRI the power went out as the flood waters were rising. We panicked as Faith was inside the MRI machine. A nurse came out and said that she is fine, they have a generator but the MRI machine did go off line and they would have to reboot it so we had to wait even longer. Faith was under an anesthetic for a lot longer than should have been. She came out and was so hungry. We took her upstairs to the babies ward and gave her a big feed. With no problems from the anesthetic we returned to our hotel.

Later that day we received a telephone call from a rather concerned neurosurgeon. He explained that he was the on call registrar and that he had been asked to review the MRI report as they had found an extremely large syrinx. A syrinx? We didn't even know what that was. It is a abnormal fluid-filled space found within the spinal cord. It is often found in children with spina bifida myelomeningocele. This is what Faith has.  We were not sure what this meant. He said that our neurosurgeon wasn't on call so he would talk to the one that was and would call back early the next morning. He said that if an adult had a syrinx that big then they would operate in the not to distance future. Was this the answer that we needed? It this why Faith was having so much trouble. We didn't know. We just had to wait.

The next morning dragged on until we got a call from the neurosurgeon registrar and he said that we would need to come back and see our own consultant neurosurgeon. He said that a syrinx can either symptomatic or asymptomatic. We were thinking, well it's obvious that it is symptomatic. Faith was starting to go numb in her legs and didn't respond anymore to touch. With the floods continuing to rise we couldn't stay in Brisbane any longer and with the appointment with our own neurosurgeon a little way away, we went home. Life at home wasn't easy, the mornings dragged out with Faith so chronically sick and not much being done. We pushed for appointments to be brought forward but didn't have much success.

 After some research we believed the syrinx to be the cause of this pain and it appeared the arnold chiari ii malformation was also symptomatic and it needed to be addressed. We just couldn't make the doctors believe it. We were told we just had to wait for our appointments. We'd spend every day with a very sick baby and we struggled with knowing what to do. Our hearts were heavy and anxious with worry. The days all felt dark. There was no rest for any of us. Faith had been up most of the night in distress and with focal seizures continuing we gave her some midazolam. We had never tried this before and her breathing slowed and she was asleep. We raced her as fast as we could to the local hospital and we were taken straight in. Of course, this woke her up and after being monitored for several hours she was fine. Faith has a strange temperature control as well, so half her body would feel ice cold and the other would be hot. Because of that taking her temperature was a challenge. When they did her temperature it was high and so on that they admitted her. We protested and explained this does happen with her. At last, our own paediatrician agreed to let us take her home but leave her admitted and come back if there are any problems.

That night she seemed ok but the next morning again she had a temperature on top of the morning seizures, sweating, pulling up legs and jerking them. Our local hospital promised to talk to the neurologists but never did so we left very early in the morning and presented to the Brisbane hospital. Faith was admitted straight away and it turned out that in the previous 24hours she had picked up a gastro bug. So we were isolated as well. We spoke to the neurologists and they said the best thing is for them to film her so they could see what is happening with the seizures. This also gave us a chance to get the neurosurgeons to come and talk to us about the MRI report as our appointment was still a couple of weeks off. We spoke with the consultant neurosurgeon and he said, yes it was a syrinx and it was one of the largest he has seen and there was a lot of built up pressure in the brain from the arnold chiari ii malformation but unless symptomatic there was nothing they would do at this stage. We couldn't believe he was serious in what he was saying, can't you see our little baby and how she is suffering but he was putting that down to the neurologists to deal with. He said that if the neurologist said that Faith was symptomatic with the syrinx and arnold chiari ii then they would act but not until then.

The seizures were filmed and they did see what we were talking about and they were not seizures, wow, we couldn't believe it, what were we going to? Astonished. They said of course it wasn't normal but it wasn't seizures. If this wasn't seizure activity what is causing Faith's foot to twitch and the sweating, the hot and cold temperature, the vomiting, the pulling up of the legs and the jerking movement. What was it then?

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.