Day 10 - No NG Tube - More Smiles

Faith is still tubeless, yay! And her pattern seems to be, eat more one day and eat less the next but slowly increasing in each days volumes so overall we are seeing a good volume improvement. But some of biggest challenges is that eating causes Faith to tire quickly but she is getting stronger. We had to cease weaning her medication, gabapentin as she was getting quite a lot of withdrawals from it and it was and is hindering her moving forward. The withdrawals appear to be change in temperature, irritability, and not being able to sleep at times. So, apart from what is going on with her body from having no NG tube, the poor little girl has to combat the gabapentin withdrawals. Faith hasn't eaten a lot of food orally in over a year and so the process of eating is tiring her greatly so she is sleeping a lot and at times over tired so not sleeping making it harder for her to cope. It is a crazy combination at times. 

Last night was particularly challenging with Faith waking for food at 11pm, 2am, 5am etc. So it has been a long day for us already. But she must have turned a corner as she is sleeping a lot more today in comparison to the last few days and of course in the back of our mind we have other causes of varying symptoms like shunt malfunction but her fontanelles are still soft and she isn't vomiting so I think it is just her adjusting to her new found identity of being a oral eater. It is a emotional roller coaster and I do long for our once 'normal routine' but less the NG tube so I look forward to finding another new 'normality' again.

We are still in touch with Faith's speech pathologist and it is wonderful to have her there if we need to brainstorm anything. Though it has only been a 11 days since we took Faith's NG tube out it feels like months have passed since then. I keep reading the quotes and sayings for encouragement and perseverance and find them a good reminder of the bigger picture and ways to handle various situations regarding Faith's approach to eating food orally, wow, she is really eating orally. Yay! 

I think we were all feeling a bit flat today after sleep deprivation and working so hard to make this work and it is working. I see Faith's tummy popping out more and I love it. A friend dropping over this morning, a mum with two little ones and what a great blessing it was, yes, she is sleep deprived too so when our minds wander we both don't really notice cause we are on the same page. It was good just talking about stuff and hearing about her life and what is happening as sometimes it can be hard when we don't have a chance to share others lives it makes one feel refreshed sharing in someone's else's life. She even brought us a home made bacon and egg pie and some eggs. How lovely. Then, later in our day we are invited to another friend's house for afternoon tea. My friend's little one had a NG tube and food aversion a while a go so she understands what we are going through. While we celebrated how Faith can eat now and as I was preparing the food she said don't be upset if she doesn't eat as much as she usually does as when little people go out they get distracted and don't eat as much. And that is what happened, Faith had a small snack and wanted to continue being involved with the other kids. Another special things happened that we haven't seen in a week or more, Faith started interacting with the other little kids, she laughed and watched and had so much fun watching them play and entertain her. Our little happy girl is slowly finding her 'normality' again. Thank you God for friends!

Oxygen, NG Tube Feeds and UTI's

We are home! We seem to be surrounded by cords, oxygen and now an NG tube. I try not to think about our situation too much as I start thinking about 'what ifs' and what things could have been like, the way I imagined it to be, but then I remember our beautiful blessing of Faith. God never gives us challenges we are unable to bare though I find that concept hard to fathom at times. Faith is talking a lot more and I love listening to her babble. Mama and dada are common words and my heart leaps when I hear them. I look forward to when she can tell us what is going on.

We have tried a couple of times to wean her off the gabapentin particularly when we have a good week but it usually backfires as she isn't ready and makes her symptoms worse. The doctors wanted us to try. So we decide just to leave it until she is more stable. UTI's are an ever present trouble and we have just about a week well and Faith gets another UTI. We can't seem to get them to stay away. Taking a daily antibiotic isn't an option as Faith has resistance to them and we need to have one of them that can treat the UTI. The best antibiotic for her UTI's seem to be nitrofurantoin, not even the IV antibiotics seem to work now.

We have had a few more trips to the Brisbane hospital with recurrent UTI's and Faith's seizure medications being reassessed. We are getting so tired of living away from home and not being able to enjoy Faith and her not being about to enjoy life. The vomiting has reached a new level, its uncontrollable. We take a chance and take Faith off the formula and NG feeds completely and put her onto pureed solids as she is doing so well at them now. After a few days of the solids she has started sleeping through the night which is a first, she is usually so restless and up and down through the night. Amazing! Loving the extra sleep. The gagging and vomiting has virtually disappeared and she is well.

At the end of November 2011 Faith has been booked in to for another MRI as before we took her off the formula the neurosurgeons wanted to see if the syrinx had returned and if that was contributing. Since she has been well, we really didn't want to have it done as her feeding is so delicate we didn't want to lose how well she was doing but we thought we better. The day of the MRI the doctors had a really hard time getting the drip in and in the end they inserted one in her head. I dislike this as it is near her shunt and it makes me so uncomfortable but we needed to get it done. The MRI report showed that the syrinx had collapsed, this is amazing as they thought this wouldn't happen. So having the MRI was good in that respect.

Unfortunately there was quite a negative aspect to the scan as from that day forward Faith's eating deteriorated. First, the speech pathologist thought it was just a sore throat from the tube used in the anesthetic, so we started blending the food and putting it down her tube and continued trying to get her to eat solids but no success. Another challenge we came against was when we were testing Faith's wee for a UTI we noticed her ketones were extremely high and this started happening after feeds too. Faith's body was in a state of ketosis. We got an urgent appointment with a metabolic specialist in Brisbane. Faith had lost 1kg in a month this was not good. Tests were done to see what was going on and it appears it was due to her change in foods and not getting enough energy so we were given a formula without protein in it - energivit. She seem to tolerate this well and we could see her getting stronger and less overall vomiting but we started getting this horrible vomiting and sweats in the morning. If only Faith was still eating solids.

Life is improving and we are starting to have more good days. Vomiting just in the morning is more bearable than vomiting all day so we are managing it ok. Christmas is approaching and we are excited that Faith might be well. I think our life is starting to change for the better.

A Way Forward - NG Tube

We were transferred by ambulance and it was a rough ride, Faith was really uncomfortable and I could tell she was feeling just as sick as I was. It was quite late at night and Faith was due a bottle feed and I was also hungry including the ambulance drivers, so they stopped at McDonald's and we had some food to keep us going. We got to the Brisbane hospital by midnight and got straight in. Faith was reviewed by a neurosurgeon and they were going to do a MRI but decided to leave it until the next day. Faith was also on a drip as she had another UTI. By about 2am we were moved to the big kids surgical ward as Faith was now over 1 and she would no longer be taken to the babies ward. We both feel straight asleep. Faith was on neurological observations so they woke her every couple of hours. They struggled to wake Faith as she was so exhausted but that is all it was.

The next day Faith had to fast for the MRI and as she wasn't drinking very well anyway and had no fluids running through so we were concerned about dehydration. The MRI got rescheduled for the next day. We could see she was very lethargic as well as having her normal vomiting she was really unwell from the UTI. The next day the MRI went fine. Positive news, Faith's shunt is working fine and the ventricles are looking good. False alarm! 

The doctors decided to keep Faith in hospital to treat the UTI again by IV antibiotics. We stayed an additional 3 days and were sent home with Faith on Cephalexin but we knew this wasn't going to work long as she was always resistant to this antibiotic. Give her a few days and the UTI would be back. Her vomiting was back to normal but she still wasn't really really well. Faith's weight was really struggling as she vomited so much formula up. The dietitian thought it best to try another formula called nutrini and we mixed it temporarily with the infatini so she wouldn't get too confused with the tastes. But we could see Faith was weak and wasn't growing as she should but there seemed nothing we could do but keep going on as we were.

We came home and life went back to the normal way, neuropathic pain, vomiting, sweating, life was just the same. We'd still see a few good days but our biggest concern was all this vomiting and the lack of weight gain. We had another spina bifida clinic and we saw the consultant pediatrician and we said that we thought Faith needed a NG tube or something similar as she is losing weight and just not getting stronger, Faith's ribs could now be seen. UTI's were a constant battle and we never seemed on top of them. None of the antibiotics seemed to work. That particular day Faith was really sick. We had a choice of coming back the following week as an elective admission or get admitted that day. We thought that it was urgent enough so asked for that day. Faith was admitted and put on a drip again to treat the UTI. So over UTI's. Because the vomiting wasn't explainable (Arnold Chiari ii malformation was enough) as such so Faith was isolated. We knew it wasn't anything catchy as she has had it for months but as precaution I guess. 

That night a lovely nurse showed us how to put an NG tube down and we started the feeds. The doctor over prescribed the amount of formula needed so we had way to much food going in and it was a constant battle as it would then make Faith vomit more as she was over full. Eventually we just refused that amount and she did do better and got stronger with slightly adjusted amounts. We stayed in hospital nearly a week and got shown how to insert an NG tube. We then headed home. It was at this point, though we didn't know it at the time, a new antibiotic was introduced to us that would improve Faith's life and help her grow. Faith was put on a 10 day course of Nitrofurtantoin.This antibiotic seem to be only available from the Brisbane hospital. It caused Faith really bad nausea and we had to give some ondansetron to help her through it. After 10 days she got better and we had some ok days, still with some vomiting but a little bit better. UTI's seem to occur 2-3 times per month but a week good is a beginning. It is was good to have a bright spot. Maybe this is the beginning!

The Recovery

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

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

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

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

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

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

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

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.

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.