For us, Pippa personified hope:· the hope that grows in parents planning their family;
· the hope that blossoms when that first test is positive;
· the hope that steels itself when the world is turned upside down;
· the hope that holds on through the darkest times;
· the hope that may one day re-emerge and grow again.
Pippa was a planned child – someone to be a playmate, friend and side-kick for Trigby. The positive pregnancy test was more than happy news. It was the end of long months of drug cycles and hormonal tempests. We knew the pregnancy would be tough – Erin's body does not take kindly to visitors – but our experience with Trigby had shown us that the months of debilitating illness Erin would experience could be soon left behind with the new arrival.
A routine scan at 13 weeks brought everything crashing down around us. There was a defect in the baby's heart – an exact diagnosis was impossible, but it looked like Hypoplastic Left Heart Syndrome. Would the baby survive? Would the baby even get to term? What should we do? We did not know. Dr Vijay Roach guided us though this period with the wisdom and compassion we needed. Under his care we came to face the reality that our baby would be different.
Vijay sent us to cardiologist Dr Gary Sholler at the Children's Hospital Westmead. It was a long six weeks before the baby developed enough for Gary to get the view he needed to confirm the diagnosis in the 19 week scan. It was HLHS. Poor Gary bore the brunt of Erin's withering cross examination, as the pages of closely typed questions emerged. Gary's patience and understanding were remarkable and we will always be grateful to him for his care. He explained the HLHS did not need to be a death sentence. It could be treated. It would be a long and difficult process, but there was hope – hope for our baby to lead a life not too dissimilar from any other child.
Gary sent us to Dr David Winlaw, the surgeon who would operate on the baby. By now we knew we were having a little girl and we were tired of hearing about "the foetus". Our little girl would be Philippa to the world, but Pippa to us. David explained to us that the HLHS defect, which had been fatal until the mid-80s now had survival rates of about 80%. By the age of five, HLHS children were going to school, playing in the playground and leading 'normal lives'. Children born with HLHS in the late '80s were now having children of their own. There was hope for Pippa.
Erin came under the care of Dr Neil Athayde, who would handle the delivery. Pippa came under the care of a large team of doctors, nurses and technicians led by Doctors Sholler and Winlaw. Hopes were high. Plans were made.
But things don't always go according to plan.
At about 30 weeks, during a now-routine monitoring scan, Dr Sholler detected a second anomaly – Intact Atrial Septum. Pippa's already compromised circulation was being impeded by a valve that wasn't supposed to close until after birth. This defect would cause damage to the heart and to the lungs during the remainder of the pregnancy – damage that could not be stopped or accurately measured. We would not know how bad it was until she was born. We heard the phrase "not uniformly fatal". We were told that the odds had basically been cut in half.
But half of good leaves room for hope.
The last weeks of the pregnancy were not easy. It is hard to prepare yourself for the unknown, especially where the best case scenario is frightening in itself.
Many of you will have read Pippa's blog as the events unfolded. We chose to put her story there for all to see, so that those who wanted to could understand what she was going through. It was also our link to the outside world during a dark and difficult time. The messages we received from you helped us, hour by hour, to maintain our hope.
The medical and surgical team led by Dr Winlaw at the Children's Hospital are the most dedicated and inspiring people we have ever met. We are eternally grateful for everything they did for Pippa.
Pippa lived for 6 days, 5 hours and about 25 minutes – about 149½ hours in all. It is hard to come to terms with a life on that scale. What can you do in 149½ hours? It's perhaps longer than you think. You could watch the Lords of the Rings film trilogy and every episode of M*A*S*H, re-live every Melbourne Cup race and listen to the entire Beatles catalogue and you would still have a little time to spare. Pippa didn't do any of those things but she did give us a lifetime of memories – her lifetime – and those memories run the gamut of emotions.
Pippa tried as hard as she could to stay with us but she just couldn't. We have to let her go, with the hope that her short life and the lessons that can be learned from her might help those that follow.
She is not the only one who is heartbroken.
Tuesday, February 22, 2011
Pippa's Funeral
Wednesday, February 16, 2011
Funeral arrangements for Philippa Raine
Tuesday, February 15, 2011
Philippa Vivienne Raine 9/2/11 - 15/2/11
We were with her at the end.
We will post funeral arrangements in the coming days.
Day 7
The doctors are giving her everything they can and it is just holding her stable. Her condition cannot be maintained indefinitely and she keeps losing ground. Eventually the medications won't be enough.
A last ditch cardiac catheter procedure is being planned for this afternoon to try and improve circulation and oxygenation from inside her heart and major arteries. It is extremely high risk but at this stage we have to go all in.
Pippa is a little cold this morning so it was time to break out more of Nana's knitting.
Monday, February 14, 2011
Update
It seems to have had a positive effect but we have to see how she settles down.
Update
Hopefully this procedure will help bring up her oxygenation a bit.
Day Six - Congenital Heart Defect Awareness Day 2011
She had a quiet night and we were able to get some sleep in the hostel.
She is maintaining a degree of stability but she is still right on the edge. She has made up a little ground, in as much as she has been weaned off some of the medications, but that is not a lot of wiggle room for the doctors if she has further difficulties.
She is quite puffy today but that should reduce with a diuretic.
Pippa will be having a variety of scans this morning. She doesn't seem to like being handled, so it could get exciting.
Sunday, February 13, 2011
A visit from a very excited and confused big brother
He doesn't understand what is going on but he hadn't seen his Mum since Wednesday morning or his Dad since Thursday night. He knew who Pippa was and pointed when we asked him "where's Pippa?"
There were some tears when it was time to leave.
It is very tiring and difficult being here watching Pippa struggle on. We are both very emotional.
Day Five photo and update
She goes through periods where she is holding her own quite well punctuated by periods of dramatic instability.
She is receiving everything they can give her so there is no wiggle room. The doctors and nurses are doing a great job of monitoring and reacting to her rollercoaster-like fluctuations.
There remains no end in sight.
18 hours off life support and struggling
Saturday, February 12, 2011
About 12 hours off life support
Things are still very precarious. Pippa is making some progress but she constantly requires interventions to balance the divergent aspects of her system, such as arhythmias, blood pressure fluctuations, heart rate fluctuations, oxygen saturation and fluid levels.
The doctors are working hard to keep her stable. The risk is that one of these fluctuations could lead to a cascade of events culminating with cardiac arrest.
It is nerve-wracking to sit and watch.
7 hours off life support
Overall she seems to be doing okay although there is some concern that her little heart is working very hard to get enough blood to the lungs.
The doctors are trying various medications to try to help Pippa's heart slow down a little.
Post-Op update from Dad
She is still very unwell and her condition is extremely fragile.
Her lungs suffered stress during pregnancy because of the underlying heart issues and are still quite 'wet'. This is limiting the amount of oxygen her lungs can infuse into her blood. She is currently receiving as much oxygen as they can give her and her levels are a bit lower than the doctors would like them. The are giving her medication to raise her blood pressure, which will assist with oxygenation. The trick will be to lower the blood pressure without losing oxygenation.
It is difficult to predict how long it will take for her lung function to improve.
We are settling in to see how she responds over the coming hours.
Pre-Op update from Dad
Pippa has had a very good night and is nicely stable for her procedure. No nasty blood pressure fluctuations overnight.
The surgeon has done his rounds with his team of residents and students. He was very happy with where Pippa is this morning.
We are having some time with Pippa before they kick us out to create the surgical field around her bed - they do today's procedure in PICU rather than theatre.
Overnight the the nurses gave Pippa a bit of a wash and put a little clip in her hair. She looks very girly ... all things considered.
Friday, February 11, 2011
Update from Dad
It seems that Pippa is not getting on with the heart/lung machine as well as she could be. She is producing a lot of clots in the system. Again, it is not clear why this is happening. It is something that happens with some children.
The plan is to try to ease Pippa off the life support tomorrow morning, since she apparently doesn't 'like' it much. The doctors will gradually wind the machine down and watch carefully how Pippa responds. If she doesn't handle things by herself, they will re-introduce the life support and try again in a few days. The surgeon thinks there are some good and some bad indicators, so it is very much a case of waiting to see what happens.
They perform the procedure at Pippa's bedside (creating a little surgical environment there so they don't have to move her) first thing in the morning. We will see her before and after, but not during the procedure.
If Pippa can get by without the life support this soon after her surgery it is an excellent sign for the future.
Photo from Day Three
She is a little puffy, most noticeably around her eyes, although also in her extremities.
Photo from Day Two
She is wearing a beanie knitted by Nana Bev, although we cannot put it on her properly because her body temperature is closely monitored and controlled by the heart/lung machine.
Pictures from Day One
After tubing Pippa they moved her to the room adjacent to the delivery theatre and transferred her to the transport trolley. Another neonatologist and a NICU nurse, both from the children’s hospital, joined the team and stabilised Pippa for the trip to intensive care. Various lines and monitors were attached and inserted.
Still preparing for the move, Pippa’s colouring was turning more purple.
This is Pippa leaving the delivery suite at Westmead Public Hospital en route to the Grace Ward for Neonatal Intensive Care at the Children’s Hospital at Westmead. Her hands and feet were quite blue.
The trip between hospitals is about 500 metres or so via internal corridors and elevators.
This is Pippa being taken from the NICU to surgery. She didn’t spend long in NICU because the doctors decided they had to operate immediately.
This was our first look at Pippa after surgery. Erin had only seen Pippa for a couple of seconds after she was born and this was our first chance to touch her. You don't really understand 'intensive care' until you see it up close.
Day Three update from Dad
We had a bit of a late night when we were called at about 11pm and told they we going to do a procedure where they would basically swap her life support machine for a new one (apparently a reasonable common and frequent procedure to deal with blood clotting issues). We were able to see Pippa before and after the procedure, which went smoothly. We only got back to bed at about 1am.
Overall Pippa's second day was largely uneventful, which is what we hope for. The most important thing for her now is to rest and let her body recover from the surgery.
Many of you might be wondering about the usual birth statistics. We simply don't know most of them. There was no time to weigh or measure her, so the doctors are working off an eyeball guess of three kilograms and about 50 centimeters. Her head is of normal proportions but as yet unmeasured.
We do know she has blue/grey eyes (much like Trigby had, although his have turned a little green since) and what looks like blonde hair, although it is still dark and gunky because we haven't been able to bathe her yet (and we have no idea when that will happen).
For what it is worth, we know she has O+ blood. Pippa is using a lot of blood products at the moment because her little body doesn't have enough for her and the heart/lung machine. There is probably as much blood in all the tubes as there is in her at any one moment. Of course this is all blood that people donated. Please think about donating blood. It's a fairly small inconvenience for something so important.
She has a little wound above her left ear which seems to have been caused in the delivery. It might need a stitch to close but that it the least of Pippa's worries. There is also a bit of bruising on the right side if her face, also caused during delivery. It just goes to show that Caesarian deliveries are far from a 'gentle' option (although despite being present for two I still have no idea what actually happens because I refuse to look).
We are sorting out suitable photos to post and will hopefully get them up this afternoon. The main two factors in picture selection are preserving Pippa's modesty and respecting the staff members' privacy (so no photos showing anyone's face etc). There is also the issue of getting a decent internet connection, but we are working on that. We are hoping to be able to post several from Day One showing her from birth through to post-surgery and then just update pictures for the days since. Stay tuned.
Finally (for now), thank you for all the supportive messages. There have been too many to reply to but we appreciate them all and eventually (one day) we will speak to you all.
Thursday, February 10, 2011
Day Two update from Dad
The surgeon tells us he is satisfied with where we stand in the circumstances. Pippa had an uneventful night and seems to be resting well.
Wednesday, February 9, 2011
Post surgery news from Dad
The surgery went as well as could be expected given the underlying problems with her heart. The various parts of the operation were all able to be done as planned.
We had a long conversation with Pippa's surgeon afterwards and he was able to explain the positive and negative indicators to us. None of the negatives came as a surprise because they were the things we had been prepared for, although they are all serious.
Pippa is still a very unwell little girl. She is on life support and has an artificial heart/lung machine helping her heart (while it recovers from the surgery). It will be several days (at the earliest) until she can be taken off life support. There is really no way to know when. It is simply a case of her letting the doctors know she is ready.
We will post some photos of Pippa in the next day or so. They are quite confronting but we think it is important to show what she is going through without editing out the rough bits.
On a positive note, we got to spend some time with her this evening, although all we could do was hold one of her feet because it was the only part of her without a line, drain or monitor attached. She is heavily sedated and cannot respond to us at all, but it was our first chance to touch her and see that she is a real little person.
Update from Dad
We had about 15 minutes in intensive care while the cardiologist and surgeon scanned Pippa's heart. They decided they had to move immediately so Pippa was raced straight to theatre. The neonatologist only barely got all the lines and drips into Pippa before she was wheeled out.
Pippa has been in surgery about 90 minutes now. We have had one update to say she is on the heart/lung machine and handling things okay. The operation will last about 10 or 11 hours and the next update will be in a couple of hours.
Announcing the birth of baby Raine
Sent via iPhone
Tuesday, February 8, 2011
Welcome
To stay alive she needs open heart surgery within hours of birth.
If this is successful, she will spend many months in Westmead Childrens Hospital and require at least two more open heart surgeries to "replumb" her cardiovascular system.
We created this page to keep our families and friends up to date on Pippa's progress. To recieve these updates in your email account, click "Subscribe to: Posts (Atom)" below and follow the instructions.