Kaitlyn’s Story

26 weeks gestation
1104 gms

Kaitlyn’s story really starts way before she was even thought of, so the saying goes. I guess you could say it started in my childhood when I was diagnosed with Left Temporal Lobe Epilepsy. After attempting control with almost every medication preferred at the time with no real success and reaching the stage of not knowing when, where or how the next seizure would happen, I underwent brain surgery on 10 July 1998, some eleven weeks before Stephen’s and my wedding day. I haven’t had a seizure since leaving hospital, and nine months later took my last ever anti-epileptic medication. This has meant I would be able to have a child and feed him or her, knowing I was not risking life-changing damage on the foetus or child through the medication I would have been taking to control the condition.

The next hurdle to jump in terms of having a family came when we discovered that, for a couple of reasons, we needed to use IVF if we wanted to have a child. On 2 November 2001 we were given an expected due date of 22 June 2002. Little were we to know what laid ahead for us over the ensuing months. I had had a couple of scares leading up to, over and after Christmas 2001, the biggest being a massive bleed on 3 January 2002 when I was hospitalised for almost a week and only allowed return home on the condition that I have total bed rest. I had just reached 16 weeks. Our 19-week scan three weeks later had shown everything was on schedule, regardless of the few hiccups we had had to date. I had even returned to work when the school year recommenced and was starting to enjoy the gradual increase in demand for relief days, which I was doing at the time.

47600001136805780642.jpg On the morning of 12 March, however, at 25 weeks and three days, it was eventually concluded that my waters had broken. I had been experiencing abdominal pain at school on and off for the entire day before, and thought nothing of it. I had actually put it down to that associated with constipation for reasons that need not be embellished. When the staff concluded that my waters had broken, I was given a steroid injection to help the baby’s lungs develop. I was flown to Brisbane that day, and on my arrival, given another steroid injection as well as an anti-D injection, given that I was Rh-negative. Kaitlyn newbornThings then sea-sawed until the evening of Friday, 15 March 2002 when, after my having become septic, Kaitlyn May was brought into the world by emergency c-section, weighing 1104g (2lb 7oz), measuring 36cm in length and with a head circumference of 21.5cm. She was one hour and twenty minutes off reaching 26 weeks gestation. To say she was small was a matter of stating the obvious. Fortunately, there were two things, according to a friend’s sister who works in the medical field, working in our favour. Firstly, the fact that she was a girl was very encouraging. The second thing in her favour was her size. Two days after Kaitlyn was born, another little girl, also a 26-weeker, came into the Nursery and weighed a mere 643g. This was the first of many signs of our absolute good fortune. In fact, the day after Kaitlyn was born, Dr Bruce Goodwin, her doctor for the duration of her stay in the Unit (Grantley Stable Neonatal Unit at Royal Women’s Hospital) in Brisbane, came and asked if I had my dates right, as he felt she looked more like a 28-weeker than a 26-weeker. Any doubt he may have had was blown away when I informed him she was the result of a successful IVF attempt.

f course, she had to be tubed straight away, but was then breathing by herself early the following morning. Not bad for being 14 weeks early! Unfortunately, that didn’t last, and they ended up returning the tube to help her breathe more easily later that same day. While they were helping her breathe, it was comforting to know she was “in air” – breathing in 21% oxygen, which is the percentage we breathe normally. It was then Sunday afternoon before I was detached from all my paraphernalia and could finally go down to the Nursery and meet our precious darling. I quote from my diary – “It’s so hard to believe that two days ago she was swimming around in my womb, completely oblivious to all that was happening. While she came along much earlier than any of us had expected, she’s actually here and absolutely perfect in every way. I can’t wait to be able to hold her in my arms and show her how much I love her instead of just stroking her and talking to her. They say it’s comforting for her to hear my voice and feel my touch, but it’s not the same as being able to hold, kiss and hug her. I can’t even give her a kiss at the moment, unless it’s through the glass of her crib.” Wearing Mum’s ringThe following day, we took one of our first photos of Kaitlyn, wearing my wedding ring as a bracelet – apparently a really common photo opportunity. 55013001136805780642.jpg

By the following day, Monday, jaundice had started to develop, so she had to go under the billi lights to treat it. With the protective pads over her eyes, and nothing but her nappy on, she looked like she was having a wow of a time laying back in the sun, getting a tan. The lamps were then taken away two days later, on the Wednesday. The Monday also saw the diagnosis of PDA where the valve connecting the two sides of the heart doesn’t close after birth, as it should. Treatment started immediately with medication in the hope that it would close by itself and not need surgical intervention.

I was eventually discharged on Friday, 22 March, a week after Kaitlyn’s untimely arrival. It was simply a matter of getting a ride in the hospital van to Ronald McDonald House next door. This would become my home away from home for the duration of my stay in Brisbane.

Tuesday 26 March saw me give Kaitlyn the first of many feeds. “I thought it would take 5 or 10 minutes for it to work its way down to her tummy, but it only took about 15-20 seconds, and she was so content afterwards.”

31 March was a really special day for a number of reasons. It was Easter Day, and I was treated to Easter Day Service at St John’s Cathedral in town. I can’t remember the last time I’d set foot in the place, especially for a service. It was a special day for another reason – it was the day we cuddled our precious bundle for the very first time. I was actually given the opportunity to do so on Good Friday, but opted to wait until Stephen was there so we could share the experience. I quote – “It was wonderful to be able to hold her (even though she was all wrapped up with just her head out of the blanket – she did manage to work her arms out) and kiss her properly instead of just stroking her body and kissing her through the crib wall. She’s so tiny and so light. It felt like I was just holding a bundle of rugs in terms of weight, but to be able to actually hold her was wonderful.”

The joy of her doing so well, however, was soon to be cut down in flames. Thursday, 4 April, one day away from three weeks of age, saw her first major hiccup. She had been doing so well to date, even with the sometimes-constant braddies and apnoea attacks. Everyone was marvelling at how well she was doing. In the wee wee hours of the morning, she decided she no longer needed the contents of her stomach, and let everyone know she was not happy. The girls described her subsequent colour as “grey”, and it hadn’t improved any by the time I got over to the unit after breakfast. They had performed a routine x-ray when the staff were able to come, and it had shown some areas of concern, but nothing conclusive. As a precaution, they decided to give her her first blood transfusion to try and boost her levels. We all kept a fairly close eye on her all day, and things started really happening early evening. They had x-rayed her again at about 4.30 pm, but we hadn’t heard anything relating to those results by the time I made my way back to Ron’s House for my early evening ritual. I was about half way through expressing when the phone rang. It was Stephen telling me I’d better hightail it back because they were taking Kaitlyn to surgery within the hour. My heart just sank. After making three phonecalls to let people know what was happening and managing to break away from a very well-meaning Ron’s House resident, I got back to Kaitlyn’s bedside in time to see them getting ready to wheel her over to the Children’s Hospital for the surgery. It turned out the events of the day were the result of her small intestine perforating. I quote – It was such a horrid feeling, seeing our precious bundle in pain and need of help, but not being able to do anything for her, not even hold her and let her know we were there for her. Once again, something you take for granted, assuming you’ll always be able to comfort your child with a cuddle and a kiss. By the time she was on her way to theatre, her little tummy had swollen so much with the air and rubbish getting through the perforation, it looked like a balloon blown up to bursting point. That hour and a half would have to have been the most anguishing I have ever experienced. The surgeon found a perforation 15cm from the end of her small intestine, and another suspicious section 3 cm away, not to mention the rubbish in her abdominal cavity. Apparently a perforated gut is a very common occurrence in prems, with two most common causes being the pressure and stress associated with a PDA and the medication used to treat it. The plan was, at the time, to wait until Kaitlyn reached 2kg in bare body weight and then go back in and rejoin the two ends of her intestine, which were now at the surface of her stomach.

One week later, on Friday 12 April, Kaitlyn had to endure yet more surgery. Bruce decided, along with the cardiologist, that her heart was not going to mend itself. So, in the early afternoon, they tied the valve off for her. When the surgeon reported to me after bringing her back from theatre, he said the hole that had developed was about the size of his little fingernail. I remember thinking it’s hard to imagine that someone so tiny could possibly have anything in their body large enough to have a hole that big in. They then gave her her second supply of blood, seeing she appeared to refuse it while in surgery. The anguish I had to endure again so soon was soon forgotten with the most amazing experience. I quote – Once she was settled back in after coming back from surgery, she gave my finger the biggest squeeze ever. She was squeezing it so tightly you could see her knuckles go white the way they do when you clench your fist. She definitely wasn’t going to let go of it in a hurry -–in fact, I almost had to prize my finger out of her hand so I could go when I had to.

The following day saw my brother and his wife come in for their only visit. They were working in England and home on their annual holidays at the time. Needless to say, any thought of seeing if the parents and grandparents only rule could be bent slightly for a cuddle given the circumstances went out the window. She was just too frail to even contemplate trying to hold her. By the time they had to return to England, both had developed headcolds, so couldn’t even say goodbye to her.

Saturday 20 April saw what could only be described as a self-extubation. Kaitlyn had decided she no longer needed this stupid thing down her throat and simply pulled it out far enough to have to be removed fully. So, in one fowl swoop, at her own doing, she went from full ventilation to CPAP, which could only be described as a positive move. The tubing they used was part of a comparison trial they were implementing at the time. I quote – When I eventually got to the hospital today, I concluded that a group of Martians had come and taken my baby away during the night and replaced her with a look-alike version of their own! With this latest development, and her having done so well, she was moved into a lower dependency room on 23 April. To outsiders, it may not seem a major move, but given the struggles she’d had to date, it was like winning Lotto.

Tuesday 25 April saw the first of many kangaroo cuddles. The first time to be able to hold her skin-to-skin. What a special moment! I quote – Knowing now what it’s like to be able to feel her close to me like that, there’s no doubt in my mind why such progress is made. It was absolutely wonderful! Her skin is so soft, and I could actually feel her in terms of weight. The euphoria I felt when she was placed in my arms was wonderful. To be able to hold her literally in my arms and against my body with no obstacles was an experience I will never forget. It certainly made the wait for it well worthwhile.

Wednesday 1 May saw Kaitlyn graduate to Special Care. She had been doing so well, going solo with her breathing, that they decided she could be moved out of Intensive Care. She would eventually have to go back when they re-connected her tummy, but for the moment was coming along beautifully. The return to her old stomping ground of Intensive Care for the surgery came along sooner rather than later. Some 200g early, and at all of seven weeks of age, operation number three occurred. She had started going backwards suddenly, with massive weight loss – 200g in 2 days – and massive losses of fluids through her stoma. It was decided, albeit before the intended time, to return to theatre on 7 May and re-connect her tummy. All went well, and she was, yet again, on the path to recovery. Once again, she could concentrate on simply growing in size and strength.

On 14 May, regular blood level tests showed an extremely low platelet count yet again, down, in fact, to single digits. Urine tests revealed she had contracted cytomegalovirus (CMV). How she came into contact with it is anyone’s guess. It is, apparently, known for its nasty effect on platelet levels. So, as a means of counteracting it, along with antibiotics, Kaitlyn received transfusion number four.

Friday 17 May saw her taken of CPAP to go solo. It was so good to see her breathing by herself without any help from a machine. She was also back to the feeding quantity she was on before her last trip to surgery – 29ml every three hours. When I excitedly told my brother of this development, his comment was, “God, that’s barely a tablespoonful. How the hell can she survive on that!” Weigh-in the following day saw us hit the magic 2kg mark. Not only did it mean she was going in the right direction, it also meant she could finally come out of the isolette and into an open cot. By 20 May, the only monitor she had hooked up to her was a portable apnoea monitor. It was so exciting to have things finally going in her direction. It also saw her moved into the transition room between Intensive and Special Care rooms, and within 12 hours, moved again back into Special Care.

On 22 May, Kaitlyn had her first “real” bath. To be able to hold her and bath her properly was sensational. That was after, on the previous day, having our first suckle at the breast. I quote – I actually had “warm fuzzy” sensations go right through my entire body! To feel her suckling from me instead of a machine was unforgettable. I can now understand why mothers say it’s one of, if not the most rewarding aspects of having a family. 25 May saw us move over to the “fattening” side of Special Care, into the second last room before the front door. I could finally see the proverbial light at the end of the tunnel calling us through.

Monday 3 June saw me move into the Parenting Room with Kaitlyn for the night, before discharge on Tuesday 4 June, some 13 weeks to the day since being flown to Brisbane after my waters having broken early, which caused all the drama. It seemed so surreal that I was finally able to take my precious bundle home, and even more so that we could do so two weeks before we were told to expect. Emotions were so mixed on that morning. I was so excited about finally being able to go home as a family, but at the same time quite apprehensive about being responsible solely (with the help and love of Stephen, of course) for her wellbeing. The time I had dreamed of for so long was finally here. We were going home as a family. On discharge, Kaitlyn weighed 2080 grammes, almost double her birth weight.

One would expect that the saga would have finished there. Unfortunately, that wasn’t to be the case. Two weeks after going home, on 18 June, Kaitlyn was re-admitted to hospital here at home. She had lost more weight than she had gained, and was not feeding at all. What milk I could produce for her was not enough, and she was starving. So, with her back in hospital and back to gravity feeding through a nasal gastric tube, we eventually managed to build her energy levels up enough for her to be able to drink herself again. During this time, however, I probably had to make the hardest decision of all – to fully bottle-feed her. I had tried everything from almost non-stop expressing, to prescription medication, to herbs, all to no avail. I had to accept that I could not feed her myself. So, on 29 June, she became a fully bottle-fed baby. Her hospital stay also saw transfusion number five due to a plummetted haemoglobin level. On 2 July, weighing 2510 grammes, we were again allowed to take her home. We were then able to demand feed her overnight, and give 3-hour feeds during the day. Things finally seemed to be settling down.

On 26 July, we travelled to Rockhampton with Kaitlyn for the first of many visits. We received a good report from the audiologist for her first hearing test. They wanted her back when sitting by herself for further tests. Likewise, the ophthalmologist also gave positive feedback. He wanted her back in twelve months for further testing. Our first visit with Dr Gray, however, had mixed results. She has since expressed to us how deeply concerned she was about Kaitlyn on that first visit, describing her as just skin and bone. Dr Gray decided to take a blood sample for a full blood count and had a great deal of fund and games trying to find a vein, let alone retrieve the blood needed for the test. Due to that concern, she recommended we add Poly-Joule and Sorbilax to her feeds to help boost her weight again and prevent severe constipation, given the sensitivity of her intestine after the operations. She also diagnosed a double hernia in Kaitlyn’s groin area. So, it was back to Brisbane for operation number four on 1 August. Thankfully, the surgeon who performed her two abdominal surgeries worked with her again. Unlike any of the other operations, this one was fairly straight forward and we were able to take her home the following day.

Since that time, we’ve had fun and games with poor feeding patterns contradicted by maximum weight gain, apparent pain whenever lying down and really fickle acceptance of solids. Thankfully, though, as I finish writing this, Kaitlyn is 13 months actual age (10 months corrected), and is absolutely blossoming. All the problems we had last year are thankfully in the past. We are now eating at meal times and having fun and games experimenting with different tastes, textures and the like. Our milk feeds are now 100% cow’s milk and free of all additions. At our twelve-month check-up, the scales tipped 8.68kg, we were 72cm long and our head circumference measured 45.5cm. A far cry, I think all would agree, from 1104g, 36cm and 21.5cm respectively at birth. We’ve been cruising around furniture for some time, but are just not quite game enough to “go out on our own”. We’ve started chattering away, with our sole word at present being “Dad” (of course!). I feel like a cracked record, saying this constantly, but it is so nice to see her able to concentrate on just being her and not have to contend with obstacle after obstacle.

While everyone says Kaitlyn’s success is due to our love and commitment as parents, I really do believe that is only part of it. After all, with her having decided to grace us with her presence so much earlier than expected, had it not been for the commitment and dedication of the staff in Brisbane, things could very well have been so very different. The support they offer to the parents of the precious bundles in their care is so very important and greatly appreciated. Having said that, I think what got me through so many heart-wrenching times while in Brisbane was seeing there was always someone in a worse predicament than us. Kaitlyn was quite frail on a number of occasions, but we never had to face the possibility that we could lose her. Selfish, but sanity-saving. To have had such a rocky start to life and be so well now is nothing short of an absolute miracle. I also believe the work of the nurses was complimented by a power over and beyond their brilliance through prayer. I will never be able to thank them enough for what they did for Kaitlyn while there. Drs Bruce Goodwin and David Cartwright both deserve special mention. For the parts all these people played in keeping Kaitlyn alive and allowing her to eventually become a strong, healthy little girl, we will be eternally grateful. Words could never express how much we appreciate what they have all done for Kaitlyn. There is, of course, one other thing that has played a major part in the recovery and progress Kaitlyn has made, and that is her will to live. Throughout every ordeal she has had to face, she had shown an inner strength and resilience any adult would love to have. 854420011368057806421.jpg

Kaitlyn age 3 In the early weeks of Kaitlyn’s life, when things were see-sawing with her constantly, a very dear friend commented on my resilience and ability to bounce back in response to the adversities I had faced in my life, with this being no exception. As I said to her, those qualities shown in Kaitlyn’s character, given that her life had only just started, absolutely leave me for dead. She truly is an inspiration to us all. With everything she has had to endure in her short life, I believe from the bottom of my heart that there is something very special awaiting her somewhere in her future.