The story of Taylor Matise Colvin Part Two

"THE FIRST SURGERY"

Taylor had her first surgery when she was only three days old. We have marked this day on our calendar as “25th September - Norwood Day”. Just having survived this long was a miracle. The time came for the doctors to take her away from us once again. We walked with her as far as they would allow us; we kissed her and said “good-bye”, maybe for the last time. It was literally heartbreaking to let her go. Andrew was crying as the doors closed behind her.

Taylor was in surgery for six hours. We were so relieved when we finally received the phone call from Dr Christian Brizard. We owe Taylor’s life to this man and his team. He told us that the surgery had gone as expected. When we finally got to see her we saw her tiny heart struggling to survive through the clear membrane they had placed over her open chest cavity. There were more tubes, monitors and machinery than there was baby. The first 48 hours after surgery are some of the most critical, with many babies not surviving this period. We again spent all day and night with her in the ICU.

Given the extent of her surgery, Taylor’s recovery was quite remarkable, although not without some setbacks. The day after surgery, and only a few hours before they had planned her chest closure, Taylor suffered a severe drop in blood pressure, heart rate and her blood/oxygen levels. We were not entirely sure what happened but later learned she had developed a pericardium effusion (build up of pressure around the heart) as a result of one chest drain blocking. We were quickly shuffled out of her ICU room and asked to wait in the parent’s room.

To watch Doctors, Surgeons and Nurses racing around treating your young child only meters away, while you wait unsure of what is happening, was unnerving and indescribable. The staff were fantastic and did everything to reassure us but there was little they could do until we could see our baby again. After what seemed like hours, but was probably only 45 min, Dr Brizard told us that everything was okay and they would still be closing Taylor’s chest later that evening. We were told that there had been no time to take Taylor to surgery, so surgery had come to her, and her chest had been manually drained. When we saw her again everything seemed normal and she was stable once again. Her chest closure went ahead as planned and she was soon back in the ICU.

Later that week, after she had been extubated, Taylor’s oxygen levels again began to fall and it was discovered that she had a significant plural effusion on the right side of her chest (fluid on the lungs) and a plural effusion drain was inserted immediately. This appeared to be successful and only 24hrs later she was transferred up to the Cardiac Ward, 7 West. During the next week we were to find that Taylor also had left vocal chord palsy, a side effect of the surgery that we had been warned was possible. Basically Taylor’s left vocal chord had been paralysed during the surgery and was unlikely to ever function again. Her right vocal chord had already begun to compensate and she was starting to cry like the best of babies.

Everything now depended upon how strong Taylor was. There was little more the surgeons could do at this time. By this time we knew our daughter was a fighter. Her nickname in 7-West was the “little star”. How apt that was. When I went on maternity leave all of our work friends put in together to adopt a star through the National Observatory in Canberra. They adopted a star in the Sagittarius constellation in Taylor’s name, which was forward dated to the 25th September 2000. It is an incredible coincidence that Taylor then had the Norwood procedure performed on that exact date.

"BETWEEN SURGERIES"

All things considered, and in comparison to many other HLHS kids, Taylor really did very well through the first surgery and recovery. All the Doctors and Nurses were totally amazed at her recovery and how strong she was. We know she is a strong willed and a determined little fighter. We were in intensive care with Taylor for a total of 9 days, and then we remained on 7-west with her for a further 3 weeks, during which time we had to establish feeding among other things.

Taylor took to the breast very well, although not immediately. It took nearly the whole 3 weeks to establish feeding - and me sleeping in the chair beside her bed for nights on end - but it was certainly worth it. Despite being totally exhausted during these weeks, we got to take our little girl back to hospital accommodation without a feeding tube. I owe Jenny, our lactation consultant, a great deal of gratitude for helping us through this time. We could not have done it without her support.

Throughout this time Taylor’s clinical signs improved. Her saturation levels moved steadily from the mid 70’s to mid 80’s, and her heart rate and blood pressure remained steady. There was little sign of her being dusky, or blue, which was probably due to a very generous shunt directing blood flow to her lungs.

As I look back, I realise I was afraid of loosing Taylor, so I had tried not to get too attached. It was not until we took her back to our accommodation, (a flat through Ronald McDonald House) that I realised what a special bond we had formed. I feel that this bond was made much stronger as a result of all that we have been through with her. I also feel that we now appreciate just how very lucky we are to have her, possibly more than we would have otherwise.

The wait for her second surgery seemed to take forever. We were very restricted with what we could do. At best we took Taylor for drives and walks in the many beautiful parks around Melbourne in between the many doctors check-ups. In many ways it worked out for the best being away from home, family and friends. We didn’t have too many visitors, which meant that Taylor had less chance of catching any bugs from other people. Although we told family and friends that she couldn’t be around sick people, many didn’t really understand. They were so keen to see her that some overlooked the fact that they may have a cough or runny nose. Taylor was not strong enough to fight a cold - it could have meant the difference between life and death - it would have meant delaying her surgery at the very least.

We got to know several other families who had babies with HLHS born around the same time as Taylor. One family elected compassionate care for their son; one little boy died shortly after his 1st surgery; another died from complications just before his 2nd surgery; and a 4th little boy fought through both surgeries. Another two families arrived at the hospital with HLHS babies between Taylor’s 1st and 2nd surgeries. By this stage I was having enough difficulty coping with what the other little babies had endured and did not feel strong enough to get to know any more babies or families. I knew that I had to put all my strength into looking after Taylor. Considering the rarity of this condition, it was quite unusual for the hospital to have so many HLHS children in at one time, and four of them from NSW.

During this time we received floods of cards, gifts, flowers and phone calls expressing support for Taylor and us. This gave us an overwhelming sense of friendship and comfort. Most people tried to understand what we were going through, but they could not. It was a great support talking with other HLHS parents we had met earlier - and seeing their children (Brenton, Jayden and Nadia) growing was our greatest encouragement. It often seemed that these parents were the only ones who understood what we were feeling.

This time was also filled with numerous visits with our Cardiologist, Dr Jim Wilkinson, and the occasional check up with the Maternal Health nurses. The visits varied in length, but often-required chest x-rays, ECG’s, and ECHO’s to be performed. Despite the constant intrusion, Taylor coped well with the visits, and continued to improve. Her heart function was very stable throughout, her oxygen saturations were in the mid 80’s, and her heart was showing few signs of being overloaded. She did continue to have mild tricuspid valve incompetence, but this was to be expected.

Our family with Dr J.Wilkinson

Towards the end of November we received notification that her second surgery, the BCPS, had been scheduled for late January. This surprised and disappointed us at first as we had expected it to be much earlier, but we were prepared to do whatever it took to help Taylor through.

By mid December, Taylor’s heart began to display signs of fatigue, and had enlarged a small degree. Her Tricuspid valve had also begun to show signs of moderate incompetence but her heart function was still generally strong. These signs were enough, however, for Dr Wilkinson to bring her BCPS forward. In his view, Taylor’s lung function was strong enough and she was in the best possible condition to face this surgery. There was no point in waiting another month when her heart function may have deteriorated further.

In their experience, many HLHS children struggled to make it between the first and second surgeries, and for this reason the RCH Melbourne preferred to perform the BCPS surgery at 3 months of age, much earlier than many other centres around the world. This made sense to us and it was a relief to be told that we would not need to wait much longer. Taylor would be two days short of turning 3 months old.

"THE SECOND SURGERY"

Five days before Christmas they were ready again to wheel Taylor away. Letting go this time was even harder than the first. We had spent so much time getting to know our little girl, and now we were going to let the doctors take her away again. Even though it was harder letting her go into surgery, we were comforted by her strength and courage. She was wheeled away from us smiling at the anaesthetist.

Her second surgery was much quicker. When we received the phone call we were relieved and could hardly wait to see our little girl. Dr Christian Brizard told us that she was very well behaved in surgery. There had been no need to perform any valve repair and the BCPS had gone smoothly.

Taylor stayed in ICU for 24 hours with us by her side the entire time. She was then moved to 7-West again. Her ECG, Echo and X-ray all confirmed that the surgery had gone very well. Taylor still had a leaking tricuspid valve, however it was only moderate and was expected to improve as her heart slowly returned to its normal size.

Taylor was in Ward 7-West for five days. She spent all of Christmas day in hospital with the other special children, her Mum & Dad and Nanna & Poppy. She got a cuddle from Santa and lots of pressies. She was having a few difficulties weaning off the phenoxybenzamine (a drug to assist heart function) and increasing the dose of Captopril, but she soon overcame this. Finally, late Christmas night she was allowed to come back to hospital accommodation with us for a few hours but she had to be back in her hospital bed first thing the next morning before Doctor’s round. At Doctor’s rounds she was discharged into our care to go back to accommodation. What an exciting day for us all, 26th December 2000.

"HEADED HOME"

Taylor had two more check-ups with Dr Wilkinson and Dr Davis as an outpatient and was progressing well. Her new heart function was strong; her chest x-rays clear, and her saturations still improving. More importantly, she continued to put on weight and feed well. We spent only ten days in accommodation before heading home to Wollongong, an hour south of Sydney on the coast.

We are now back in our own home with all our dogs together. It feels wonderful and my bad dreams have finally stopped - I can finally sleep at night without waking from nightmares. Taylor’s third surgery will not be scheduled until she starts showing signs of needing it. This may be in 2-3 years or not for as long as 6-7. Either way, she is home to stay for now, and apart from regular visits to the Westmead Children’s Hospital, where she will again come under the care of Dr Cooper - with whom we have the utmost confidence, she is free from further medical intervention.

Taylor is currently on Aspirin daily, Lasix twice daily and Captopril three times a day. We still have to be extremely careful of bugs etc. and plan to get vaccinated against the flu each year. Taylor is now four months old and is developmentally where she should be for a normal healthy child her age despite two open-heart surgeries and a prolonged hospital stay. She continues to excel in some areas and is a little slower in others (such as lying on her chest), but is well within all the normal parameters. She will certainly still have her restrictions and limitations - but we realise just how lucky we are to have her just the way she is.

We owe so much to so many people for helping us get this far, but particularly the staff at the RCH Melbourne, our friends and family, and a special mention of our ultra stenographer who first detected the problem at 18 weeks. Taylor has a very long road ahead, however, she has already shown herself to be tough, and a fighter, so we can now look forward to many happy moments together, something that we never thought possible. Already she has shone light into our lives.

As I write this I have a smile on my face. We have spoken in days and weeks for so long now. We have been afraid to refer to anything with Taylor in terms of months or years until just now. I realise that things could change at any moment - but for now - Heaven can wait for this little angel.