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!
Showing posts with label plastic surgeons. Show all posts
Showing posts with label plastic surgeons. Show all posts
Sunday, 29 April 2012
Friday, 27 April 2012
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.
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.
Thursday, 26 April 2012
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!
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!
Wednesday, 25 April 2012
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.
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.
Tuesday, 24 April 2012
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.
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.
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