ForeverMissed
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Her Life

DAY 6 – Monday 2 Nov 09 - LBO - Discovered Pressure Sore

December 16, 2017

She had an LBO (bronchoscopy) this morning and there had been some talk of extubating, but it was just that – talk.  Dr Cheng checked everything was going OK and discovered some narrowing at the end of the trachea and left lung.  It seemed to be an awful long wait – about 1 ½ hours in theatre.  Her respiratory rate on the left side has not been good so that is being kept an eye on.  He repositioned the tube and did some suctioning and they have decided to see how she goes for another day or so.  She still has 2 drains in her tummy (for the heart) and hopefully she’ll get them out tomorrow. 

The nurse we had on today, Joanne, was really good and decided to check that Tahlia didn’t have any pressure sores on her back.  Unfortunately they found a rather large dark purple looking sore on the back of her head!  They think it was probably caused by the cooling blanket as she was on it for such a long time and, of course, because they can’t move her.  They have now put a special pressure mat under her head and have worked out a way to turn her on her side every 2 hours without disturbing the alignment of her neck and body.  We are waiting to see what they call “Plastics”, which are the plastic surgery team who deal with these sorts of abrasions and will help to monitor and look after it in case there is any infection.  Apparently they cause blood infections  but hopefully they found it just in time before it got worse.  Just another thing to add to the list!!  They had to cut away a little bit of her hair, and I must say I had a bit of a cry over that.  It was a bit silly, there are so many worse things she’s going through, but she’s never had her hair cut before and they don’t know if this patch will ever grow back.  At least there is some consolation that it is right on the pointy bit of her head at the back, so she can cover it with long hair.

 She did however have a very peaceful afternoon sleeping and the doctors have assured us she is doing all the rights things for this point in time.  (Her heart rate dropped to 103! for at least a few hours  and she didn’t  even stir when they suctioned her or turned her over.  I was a little concerned that maybe she was too sedated but was assured that she was simply relaxed and having a good sleep. She is still on high doses of morphine and another sedative that I can’t remember the name of which are keeping her reasonably calm.  Peter Cooper came and saw us this afternoon and said that she doing OK – not great, but not bad either.  It’s just a day by day  thing.

DAY 5 – Sunday 1 Nov 09 - Muscle Relaxant Turned Off

December 16, 2017

Today was a bit of an up and down day.  The muscle relaxant drug was turned off and Tahlia was able to move her arms and legs by herself.  It only took about half an hour for the effects of the drug to wear off and then her hand moved slightly.  I missed the first couple of movements as I was looking in the wrong direction but then I saw her arm move.  I can’t describe the feeling.  Happiness, relief and apprehension.  It was wonderful to know that she could move on her own, but also somewhat scary as I really didn’t know much she would be really aware of and I didn’t/don’t want her to be scared and not be able to tell  me.  She is still heavily sedated, but Nimmy went to clean her mouth and said “Tahlia, can you please open your mouth” and she actually shook her head slightly  “no!”. 

I thought it must have just been a fluke, so Nimmy asked again, and sure enough, there was another shake “No”!  After that she started moving a bit more and then all her stats went through the roof.  She also had more problems breathing which you could see from the way her chest was rising and falling.  Her chest looked like it was almost beating through her skin and she kept drawing in deep.  According to one of the doctors she was actually  sucking in a small breath and at the same time the ventilation machine was pushing down a burst of air.  It was also felt there may have been a blockage of some sort. 

Dr Stephen Jacobbe and 2 other ICU doctors discussed  her and decided on first trying another suction.  The previous suction attempts had not brought anything up apart from one good one earlier in the morning.   After her stats rose Nimmy and another couple of nurses turned her over slightly (they removed the cooling blanket from underneath her too to make her a little bit more comfortable) and did another suction.   This time they got up a fair amount of stuff and it really seemed to help get her back under control.  You could actually hear her cough at one point when the nurse was bagging her (manually controlling the flow of oxygen through the tube with a bag while doing the suction).  One of the doctors asked her if anything hurt and again, she slightly shook her head “no”.  They gave her another one off dose of the paralyse drug which also helped to settle her down. I had a few tears after that.  I was reassured that she wouldn’t be able to remember anything and that she was so heavily sedated that she also would be in no pain – I hope that’s true! 

After about an hour her stats started rising again and her chest was really working hard again.  Nimmy was great and got the doctor to check her again. (Her C02 rose up to 90 and her BP up to 90 and heart rate went up to 160. After another suction, she was again peaceful.  Scott arrived about 7:15pm so I went down to the kitchen in the parent’s hostel to have the lovely dinner Di brought to the hospital.  When I came back, her stats were still the same and the muscle relaxant drug had worn off and she was moving again.  She was peaceful though.  Hopefully she will have a good night and nothing will go wrong!  She is scheduled to have a broncoscopy tomorrow morning at 8am with Dr Cheng,  He will then decide whether or not it is time to remove/extubate the tube.  They need to get it out ASAP as leaving it in can causes complications like pneumonia, muscle atrophy and other stuff

DAY 4 – Saturday, 31 Nov 09

December 16, 2017

Scott is currently staying with Tahlia overnight so I got to ICU around 6:30am.  Apparently it was a bit of a rocky night with her stats and temperature being unstable and C02 levels continually rising.  At around 7:45am Drs Cooper and Cheng, together with the general ICU team, came around to assess her.  Because of the situation overnight, they decided to monitor her throughout the morning and if her stats were no better by lunch time then Peter would perform a fibreoptic bronchoscopy to see if there was any obstruction. 

The nurses were instructed to use saline every time they did a suction to try and dissolve any mucous or debris that was building up.   The first couple of suctions brought up nothing.  However around 11:30am she was given another suction which brought up a fair amount of stuff and after that her stats settled right back down.  Peter and Alan were pretty happy about that as they didn’t have to worry about coming back because if the suctions weren’t working then they would have had to have gone back into theatre and either had the tube repositioned and/or be suctioned there. When I left her tonight around 9pm she was doing well and all stats were within range.  I have been reading to her and asked Scott to bring in some of my old Enid Blighton books.  I am sure that she can recognise, if not hear, my voice and hopefully that is helping her cope with what’s happening.  Anyway, one of the nurses (Sally) came up to me and said how lovely it was to hear me reading to my child instead of just turning on a DVD.  She said she was also really enjoying listening to the stories, which was really sweet.  Her grandmother apparently used to read her stories as a child (from Mills & Boone of all things!) and that listening to me brought back some lovely memories.

DAY 3-Friday, 30 October 2009 - Removed 2 drainage tubes

December 16, 2017

Today was a little better and they removed the 2 drainage tubes from Tahlia’s tummy which were draining fluid from her lungs.  She still has a further 2 drainage tubes draining fluid from around her heart, but these are slowing down and may be removed tomorrow.  Her temperature keeps fluctuating (up to around 38.5 ) and has had to be brought down each time by using a cooling blanket under her as paracetamol and washing her down with cool cloths hasn’t worked.  Every time her temp goes up, so does her blood pressure (sitting in the 70s and 80s) and heart rate (up to 150) and CO2 readings (70s).  The doctors think it may be from being on the bypass machine twice as that can cause temperature to increase, but they have sent a couple of blood cultures to be analysed for bugs to see if that could be the cause of the continual rise in temp.  We will know the results in another 24 hours.  I am a little worried that she could have gotten an infection when they opened her up in the ICU ward, but the doctors and nurses have stressed that it was done under relatively sterile conditions, but it still wasn’t done in surgery so there is still that element of risk.  However, at this point it doesn’t look like she has any infection.

Dr Cheng and Dr Peter Cooper came around this morning and Dr Cooper again this afternoon.  They are pleased with her to date and it is proposed to stop the muscle relaxant drug on Sunday and look at extubating the tube on Monday or Tuesday if it’s looking good.  The thought of her being aware of what’s going on is pretty scary, but she will still have lots of other drugs that will apparently help her cope, so I am hoping it will be better than I am anticipating.  They need to remove the tube as soon as possible because the longer it is inside her trachea the more problems that can arise  (ie pneumonia and other problems).  There have been no further nose bleeds so they think it may have been caused by the feeding tube in her nose.  She was also given her first feed this afternoon through the gastric tube.  We keep getting told to prepare ourselves for a rocky road ahead once the tube is out, so that is certainly something to look forward too!!  At the moment she looks pretty good (as well as she can) and I feel calmer seeing her like that as I don’t want to see her in any pain or distress.  Fingers crossed it won’t be as bad as everyone has intimated!

DAY 2 – Thursday 29 Oct

December 16, 2017

We had a few ups and downs today when her blood pressure dropped considerably all of a sudden and her temperature wouldn’t go down – 39. 6 (but her arms, legs, hands and feet were freezing !  They had to put ice packs on her and a special chilled mattress thing under her to bring her temp down), but she is doing OK tonight and hopefully will get through the night OK.  Scott is staying with her over night while I get some rest in the hostel room located on the floor below ICU.  I will then take over around 6am and he will come back in the early evening.  We will do this until her breathing tube is removed – hopefully by next Wednesday and then when he goes back to work I will stay with her until he gets to the hospital around 7:30pm and will go and get some rest until around 1am, when he will go home.  Mum or Di will then give me a break during the day for a few hours.  I hate leaving her for any time, but I know I have to get rest so I won’t be stupid.

She is such a little fighter and I know she will make it through this.  We had been told to expect a real rollercoaster ride while we are in here -  we just didn’t expect the rollercoaster to start so soon in relation to what happened yesterday  and neither did any of the doctors and nurses – everyone was pretty shocked by her arrest yesterday and the need for a second lot of surgery.  They have all been so concerned and attentive to her which is comforting and reassuring.   We never want to experience that level of terror again!  The nurse just came running out of ICU to the waiting area where we were and just said “you need to come in as her heart has stopped beating!” – I think my heart stopped at the same time.  When we got into her room there were a cast of thousands working on her and then they had to re-open her up in ICU before rushing her back to surgery.  It was just so scary  – I wouldn’t wish this on my worst enemy! 

Mum, Dad and Di were also with us from the early afternoon and were also pretty traumatised by everything.  I am just so grateful that she has stabilised enough today. I know we just have to take each day as it comes, but boy I hope it gets a little easier!  They gave her an EEG today to check for brain damage from the potential loss of oxygen from the arrest, but they really won’t know for sure until she wakes up.  The general consensus though is that they got to her quickly enough so she should hopefully be OK -  We’d never even considered that possibility – and to be honest I can’t even entertain the possibility that anything like that will happen – she will be OK, we just know it!  She’s starting to swell up from excess fluid, but they’ve given her another drug to help her kidneys and that should hopefully reduce the swelling over the next day. She has 4 drainage tubes coming out of her tummy and another line in her neck and of course the ventilator and gastric tubes in her nose, apart from the lines for all the different drugs going into her system.  There are at least 10 different drugs that are currently being pumped through her.  She has had a couple of nose bleeds which they can’t explain and which have given me a bit of a scare, but they are pretty sure that it’s not connected with the trachea however are keeping an eye on it.  There are so many unknowns!  The scar on her chest doesn’t look too bad though and hopefully will heal well, especially considering it was opened twice. 

Dr Winlaw intimated that someone made a mistake with the suturing and that’s what caused the air leak – we thought he was doing it all, so we are not sure exactly what happened.  We discovered after the op that the cardiac surgeon – who we had only met once – actually performed the surgery, with the ENT surgeon, who we have seen often, guiding him.  We were really surprised at this as we were under the impression that the ENT guy would do the trachea and the cardiac guy the sling.  The cardiac surgeon is actually Head of the department and is obviously very good, but it would have been nice to have had this explained to us previously as we were relying on the ENT guy’s supposed expertise to get Tahlia through this.  He trained in the US and was supposedly one of the top guys in the country to perform this type of surgery.  So we were and are still a little puzzled as to why he didn’t do it.  According to the cardiac guy he was “Dr Cheng’s robot” and it was a combination of his magic hands and Dr Cheng’s expertise.  I am sure it must have been the best way to do it, but it would have been nice to have been told first!   

I am a bit tired but am doing OK.  It was a very hard day yesterday, especially as she was so well yesterday morning and then so critical by the afternoon.  I’d told her the day before that we were going to see the doctor and she was quite happy about that.  I think that made it even worse in a way because I felt like I’d deceived her and instead of just having a check up she ended up in a critical condition.  I know logically that the surgery was necessary, but emotionally . . . well that’s a slightly different story.  

DAY 1 – Wednesday, 28 Oct 2009 SURGERY

December 16, 2017

ICU – Bed 4

 Tahlia is finally stable after an absolutely horrendous day.  We got to the hospital at 7am and she was prepped for surgery around 8am.  It was a pretty stressful time for Scott and I waiting for her to go into surgery.  A nurse gave her some medicine to make her drowsy and they lay her in a bed and put Hi5 on the starlight mobile entertainment unit for her to watch.  It really didn’t take her too long for her eyes to start blinking and shutting, then around 8am the anaesthetist came and said they were ready for her.  He asked I was OK to carry her to theatre, so I carried her down a really long corridor to the preparation room.  He had her sit on my lap and placed a small mask over her face with the sleeping gas.  He started singing “Old McDonald had a Farm” and I sang along with him.  She struggled only slightly and then fell asleep.  He then helped me lift her onto the bed and then I had to go.  Leaving her there is probably the hardest thing I have ever done in my life.  I have never felt so awful.  I went back to Scott and we just both cried and hugged each other.  We then began the long wait for the surgery to over. 

At 1:30pm we were told by her ENT surgeon – Alan Cheng - that everything had gone well and that the cardiac surgeon – David Winlaw -  was closing her up and that she should be in ICU around 2:30pm.  They discovered that the stenosis was longer than they originally thought – over 70% - and that the pulmonary artery was smaller than it should be, but they believed the surgery had gone pretty well.  Just before she was brought back up to ICU, Dr Winlaw came and saw us and told us that she was having problems ventilating and they were thinking of repositioning the breathing tube and that he had to call Dr Cheng back.  We knew something was wrong by the look on his face – it scared the life out of me, Next thing we know we are being told to come into ICU as she was in cardiac arrest!  Boy, that is something we never want to see again!   We were rushed into her room where I don’t know how many medical staff were surrounding her.  She was naked and lying on a bed and  I could see a doctor pounding on her chest to restart her heart.  They had to resuscitate her and we didn’t know if she was going to make it. (We were later told they worked on her for 9 minutes to get her heart started again).  They then discovered that there was an air leak and they opened her chest up again in the ICU ward.  Dr David Schell was the doctor who had the sudden thought that it may be an air leak and stuck a needle into the right side of her chest which immediately released the air pressure inside around her heart.  She was then rushed back into surgery and put back on the heart/lung bypass machine for the second time that day.  Dr Winlaw thought that a tear occurred when they tried readjusting the ventilation tube and that caused air pressure to condense around the heart.  Around 8:30 tonight she was finally stable and we were able to see her.  She is doing OK but has a high temperature, but Scott is staying with her for the next few hours while I try to get a little bit of sleep.  At the moment she is totally paralysed and on heavy medications including 3 major antibiotics and will be like that for the next 72 hours.  After that they will reassess when they will take her tube out.

 

16 OCTOBER 2009 - PRE-ADMISSION CLINIC

December 16, 2017

We had to go to the Children’s Hospital today for preadmission tests.  This involved having an ECG, meeting with the Cardiac Nurse Consultant, being weighed and having height recorded, having a chest x-ray, meeting the anaesthetist, meeting the play therapist, talking to a genetic counsellor and having blood taken.  We had to be at the hospital by 9am and finally finished around 2:30pm. 

Mum came with me and Tahlia was so good and even though she missed out on her usual midday sleep, she was happy and cooperative.  All of the different people we met were great – (Helen Knight, Clinical Nurse Consultant was the main contact) – except for the nurse in pathology.  We had to wait for over an hour and a half to have the blood test done and the small waiting room was packed to the rafters, which was pretty crazy as she could have picked up any kind of bug while we were waiting to go in.  When we finally got taken in, I asked the nurse if they were going to put any kind of numbing cream on Tahlia’s hand before putting in the needle.  She advised that if I had wanted to do that, then I should have bought it and applied it 45 minutes prior to seeing her.  I told her that no one had ever mentioned in before.  She was really quite rude about it.  She told me to hold Tahlia on my knee while she inserted the needle.  Tahlia didn’t even flinch until the nurse said that she couldn’t get any blood out and started the working the needle into her arm.  My heart broke when she started sobbing.  Both mum and I were almost crying too but the nurse just completely ignored us.  There was no empathy or compassion towards Tahlia and I was pretty disgusted by the whole way we were treated. 

The cardiac waiting room had a big fish tank which intrigued Tahlia.  She kept wanting to look at the fish and was captivated by them swimming around.  Scott has now decided to buy her a gold fish when she comes home from hospital.

Tahlia was also given her first set of “heart beads”.  This is a fabulous idea where the child receives a bead to put on a necklace for each procedure they have during their recovery, starting from the pre-admission clinic, through to discharge.  I think it’s a great idea as it will be a lovely “trophy” for Tahlia when she is older to show her what she went through and how brave she was.  It’s also a positive thing for parents too.

The next chapter

December 16, 2017

It has been a long time since I have been able to continue writing Tahlia's story ... it was just too hard.  But I feel I owe it to her to complete her journey and will now add the daily diary I kept while she was in hospital.  But first, to continue from where I left off ...

After doing considerable research on Tahlia's condition, I came across a link to a television series that had been made in the UK, and had been aired in Australia as well, called Child In A Million.  It was a series about children with rare life threatening problems which were treated at the Great Ormond Street Hospital in London. One of the children in the documentary was a little girl called Tahlia, and she had exactly the same condition as my Tahlia and had been successfully operated on!!  I decided to write to the producers of the show, asking if they could pass on my details to the family and if they would be willing to talk to me as I had so many questions.  I was ecstatic when Tahila's mum, Alison, contacted me and we struck up an immediate friendship.  She was instrumental to me staying positive about my Tahlia's operation as her little girl was doing so well.  I thought it was a very positive omen that she had a child with the same name as mine, not to mention the same condition, and that her child had made it through the surgery and was doing well.

So the next few months were a round of doctors: we had the best ENT surgeon at Westmead, the best respiratory specialist and cardiac surgeon all doing their best to ensure a successful outcome.  They were also in contact with Great Ormond Street Hospital in London as they had performed about 70 something surgeries of the same type and were therefore more experienced and could contribute their expertise as needed.  It was still pretty scary though as only a handful of surgeries of this type had been performed in Australia but Tahlia's outcome was positive as she was so healthy at the time of surgery.... in fact, by the time the surgery was scheduled you wouldnt have known there was anything wrong with her ...

I prepared her as well as I could by reading children't stories about going to hospital and I even had a scrub nurse outfit so that she would find it a familiar sight once she was admitted.  On the morning of the surgery as we were driving to the hospital, she was happy and excited.  I can still see her pointing out the window saying "mummy, look at the big truck!" .... I was so scared but trying to stay upbeat and positive for her.  It was just so surreal.  My daughter looked so healthy and to think that within a few hours she was going to be having life threatening surgery just didnt make sense.

So, I am now including my diary of the days leading up to her death.  Its not an easy read, but it is her story and I need to have it included.  I had wanted to keep a diary as I thought it could be of benefit to her when she was older to see how strong and amazing she was and that she could do anything and beat any odds.  I had no idea it would end up being a record of her last days with us . . . so here goes . . . 


October 12, 2010

We had been trying for years to have a baby.  As my 40th birthday approached, I felt it was becoming more and more hopeless, and I just couldn’t wait for the day to be over. Almost exactly one month to the day after I turned 40, we began our IVF journey and had two embryos implanted – it was the 6th year anniversary of the passing of my beautiful grandmother. I knew that had to be a good omen! 2 weeks later, it was confirmed – I was pregnant. We couldn’t believe it, I don’t think I had ever been so happy and excited in all my life!  Unfortunately at 8 weeks I miscarried one of the twins, but the other one continued to thrive. At around 9 weeks I was diagnosed with gestational diabetes and told I would have to give myself insulin injections before every meal for the duration of the pregnancy and maintain a special diet (this was 2 days before Christmas!). Wow - that was a shock! But I knew I would do anything to help our baby make it through to term and, after a bit of adjustment, it just became part of my routine.

I loved being pregnant. I felt fantastic most of the time and relished the feeling of my growing baby inside me. At the 20 week ultrasound we found out we having a girl. We were ecstatic! But then we discovered that the umbilical cord only comprised of one artery and one vein instead of two arteries and one vein (the umbilical cord carries oxygen and nutrients from the placenta to the baby through a single vein and waste products are taken from the baby back to the placenta via two arteries). We were pretty scared but the doctors reassured us that everything else looked normal and that I should have a couple more ultrasounds throughout the pregnancy to keep an eye on her growth. I thought that between having gestational diabetes, where the baby can grow too big, to only having a single artery, which can cause the baby to be underweight, that it should all even itself out! And luckily it did! At just over 39 weeks, on 25 June 2007, our long awaited and beautiful baby girl, Tahlia,  was born by cesarean, weighing a healthy 2.9kg. This was exactly 7 years and one day from the day her mummy and daddy met!  She had to spend a couple of days in the intensive care unit to monitor her blood sugar levels (which was hard to cope with at the time as all I wanted to do was hold her and have her with me and it was pretty awful to see her with a gastric tube down her nose), but she got over that little hurdle very quickly and was soon back in my arms.


 After struggling to breastfeed in hospital due to attachment problems, I was nervous to go home, but luckily once I was home she began latching on properly and feeding became pretty easy. At the 6 week check up with the area health nurse, everything looked fine and then we had a follow up appointment with the pediatrician from the hospital when she was 8 weeks old. Again, everything appeared fine apart from the fact that she sounded a little noisy when she breathed. We were told it was probably a condition called Laryngomalacia (literally, "soft larynx") which is apparently a common condition in infancy, in which the soft, immature cartilage of the upper larynx collapses inward during inhalation, causing airway obstruction and noisy breathing or stridor.  We were told that it would probably become louder as she grew over the next few months, but that she should grow out of it by the time she was one. She was growing well so there was no reason for concern.  

At 14 weeks, she developed a bad cold and her breathing became very laboured. After taking her to her GP (which is a practice for children only), we were sent to have x-rays taken. There was a bit of blur on the chest x-ray that they weren’t sure about, but the doctor said it all looked OK, but that if she wasn’t any better in the next couple of days to come back (this was on a Saturday). On Monday morning, as I got her ready to attend our second mother’s group meeting, I did not feel comfortable with her breathing and decided she needed to see the doctor again. The doctor immediately knew she wasn’t good and told me to take her straight to Westmead Children’s Hospital, which I did. I had never been so scared in my life. The doctor had rung ahead, so they were expecting me. After being evaluated in the emergency area we were transferred to a ward and told she had bronchilitis. After spending a horrendous week in hospital, we finally went home. 

At 19 weeks, she still sounded pretty noisy when she was breathing, so we took her back to the pediatrician who prescribed a short course of treatment on ventalin. This didn’t appear to make any difference and she was fine again until 2 months later (January), when we were visiting my parents in Nelson Bay she became dreadfully ill again and had to be transported to Newcastle hospital by ambulance. Again we were told she had a virus and we spent another 4 days in hospital. In March we had another check up with her pediatrician and he advised that he was concerned that her stridor appeared louder than it should for her age and he referred us to a respiratory specialist where he thought they would probably do a bronchoscopy, which is where they insert a small camera down the trachea to see if there are any obstructions.  

In April, we were once again admitted to the Children’s Hospital for another 4 day stay, and again, it was just put down to complications with bronchilitis. On 24 April 2008 Tahlia had the bronchoscopy. We were not prepared for what came next. . . The results of the bronchoscopy indicated that she had a very narrow trachea – 1.9mm (a newborn baby has a trachea of approx 5mm) and that she had a condition known as long segment tracheal stenosis with complete rings. Long segment tracheal stenosis (LSTS) is a rare but life threatening condition which is usually diagnosed either immediately after birth or during the first year of life. Imagine the windpipe is rather like vacuum cleaner tubing, only in a normal trachea, instead of complete rings around the tubing there are C-shaped (or perhaps more probably U-shaped) rings of cartilage (cartilage is the flexible stuff in your ears and nose), with the rings being joined together by other types of tissue and at the back by a strip of muscle. This allows the windpipe to grow and to become bigger when you want to breath in and out quickly. With LSTS, instead of C-shaped rings, the rings in the trachea are complete (O-shaped) and therefore growth is restricted. The airway becomes very narrow and as the child increases its activity either through feeding or through exercise breathing becomes extremely difficult and sometimes impossible requiring urgent treatment. (Imagine running 100 metres and then trying to breath through a straw, and that’s what it must feel like to children with this condition). We couldn’t believe that there was something seriously wrong.  Only one in at least 1 million children are born with this condition and only half a dozen operations had been performed in Australia at that time.

The specialist advised that she would need regular checkups, but for the moment she was doing well so we were just going to have to wait and see how she developed.    On 30 April 2008 I took Tahlia to see her GP because she had an eczma like rash on her fingers. While the doctor was examining her, she discovered a heart murmour and gave us a referral to a cardiac specialist. As if that didn’t make us feel a whole lot better!! And then, just 2 days after seeing the GP, our world seemed to crumble. Tahlia became really ill again and was in severe respiratory distress. After calling the ambulance we were once again admitted to the Children’s Hospital and this time ended up in Intensive Care. She was initially diagnosed with a virus and was going to be sent home, but over the course of a few hours her condition rapidly deteriorated and we were transferred to the ICU unit. She laboured with her breathing for 3 more days and finally, when she was so exhausted and really couldn’t function anymore, the doctors decided to intubate her to help her breathe and give her a rest. At this time she also underwent a series of cardiac tests and instead of diagnosing a heart murmour, we were informed that her left pulmonary artery was in the wrong position and was positioned between her trachea and larynx and would need to be repositioned as it could cause major obstruction to her already compromised trachea. Scott and I were both in shock, we couldn’t believe what was happening. In the space of a couple of weeks we were on information overload and had no idea whether our beautiful little girl was going to make it through it all.


 I was also still breastfeeding her at the time and of course was unable to feed her for a couple of weeks. That in itself was pretty stressful and even though I tried expressing regularly my supply began to dwindle. I felt I was losing control of my world. I had wanted to keep breastfeeding her for as long as possible and I knew that the immunity properties of breast milk could only help her recovery. I didn’t want her to be fed totally on formula if I could help it (she was being fed through a nasogastric tube which goes through the nose and straight in the stomach). It was the only way I knew that I could personally be of help to her and the stress of that being taken away from me was almost too much to bear. Thanks to the help of a few of the fabulous nurses, I was given medication to help my supply and thank goodness after a few days it started working. I was finally able to help my baby in some small way .   After a week, the tube was taken out of her throat and she started breathing properly on her own again. Unfortunately due being sedated for a week on morphine, the poor little thing developed withdrawal symptoms and had to be weaned off it gradually. We were transferred to Edgar Stephens ward and after another week, it was thought she had recovered well enough to go home. Unfortunately that ended up being a little premature because within a few hours of being home she went into respiratory distress again and ended up being admitted back to ICU and then the ward for a further week.   It was a long month living in the hospital environment. I lived there while Scott would go to work, however he had to travel back and forth from home to look after our dog and cat. In the early weeks on the ICU ward Scott would sit by her for most of the night and I would take over in the early morning through to the evening when he would return again. I really don’t know how he did it! Our wonderful family also came to give me a break to catch up on some sleep, but the majority of the time I stayed by her bed, I just couldn’t leave her.  

Finally we got home and she was getting better and started putting on weight again (she’d lost quite a bit while she was in hospital). We then began the rounds of monthly checkups between her respiratory specialist, pediatrician, cardiologist, ENT surgeon and GP as there was a general consensus that she would ultimately require surgery. From that point on we decided that we would keep her pretty much isolated from the general public and especially small children because catching a virus or a cold could potentially be fatal. If she was going to have to have surgery, then we wanted to ensure that she was as strong and healthy as possible. So apart from doctors visits, so began our isolation. Scott of course had to go to work, so he ensured that as soon as he came home he would change clothes and use disinfecting hand sanitizers to try and keep germs to a minimum. I also could only go out occasionally and was very aware of people around me. We would take Tahlia out only to outdoor places where there were few people, ie parks, the beach etc and we would try and stay away from any large groups.   Unfortunately though, the bugs still got through and we had another hospital visit at the end of July. Luckily this time she managed to fight the virus and was only in hospital for 3 days. During this time we did as much research as possible on her condition on the internet and what we found wasn’t particularly comforting.

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