Matty's Blog

This journal details the first two weeks of Matthew’s life. It describes in as much detail all the stuff that we were going through and I hope it will provide some insight, understanding and hope to whoever reads it.

Day 1 – 7/8/08 – Thursday
Today Mum went for a routine antenatal appointment. She was quite shocked when her urine litmus test result turned blue for protein. That means it is really high. Combined with a high blood pressure score, the midwives down at the Family Birthing Centre sent her up to the main hospital to have some tests to make sure all was ok.
Mum rang Dad from the hospital whilst waiting for some tests and told him not to worry, she’d be out in an hour and to not come down. Dad came anyway.
A little later, Mum’s blood pressure still isn’t looking so good, everyone is having trouble even getting a decent reading on the fetal heart rate monitor because Matthew won’t stay still and Dad’s still telling Mum that everything’s going to be fine. By this time, Mum’s had about half a dozen attempts to insert a canular to get her on some fluids.
A little later, Dr M is telling Mum that bubs may have to be born within the next two weeks. Mum and Dad are shell shocked – this shouldn’t be happening.
After a laborious process of getting 20 minutes of heart trace on Matthew, and an ultrasound to size up Matty, Dr M is telling Mum that bubs may have to be born in the next couple of days – this shouldn’t be happening.
Three more attempts at getting in a canular sees the anaesthetist called down.. time for a pro. The anaesthetist, looking like a pro whips out some local and proceeds to give Mum the biggest bruise ever. He gets the canular in on the second attempt though.
Mum’s moved to the labour ward and prepped for a long night. The idea is to keep Matty in as long as possible to give him the best chance. Another ultrasound is setup, and it’s discovered that Matty is sized at about 22ish weeks… at 25 weeks, 5 days – this shouldn’t be happening.
After a while the doctors all come back in. Dr M announces that the baby must come out… now! Mum is prepped, Dad is dressed like a first year intern and a couple of hours later, Matty is brought into the world. It only takes 10 minutes for him to be born. He is resuscitated, briefly shown to Mum and Dad, then whipped down to the Serious Care Nursery 3 – the highest level of neonatal care in the state.
Mum is taken to the Adult Serious Care ward, bed 6, via recovery, utterly exhausted. Now on magnesium sulphate, she’s not allowed to drink more than 100ml/hour, but compassion is shown by the nurses down there who provide her with icy poles that make the thirst bearable.
Dad sees Matthew down in the SCN. Covered in a piece of bubble wrap, under IR heat lamps is the most precious thing in the world. At 23:22, Thursday the 7th of August, 2008, Matthew has come into the world 3 and a half months early, weighing in at just 500gms, no more than a stick of butter.

Day 2 – 8/8/08 – Friday
Mum spends most of the day in a pethidine haze to try to deal with the fact that she has been sliced and diced. The nurses down in the ASCU are awesome and make a tough situation a bit more bearable. It is a long and exhausting day, with a few visitors which add to Mum’s exhaustion. For Matthew, the day is even more challenging, as he has a head scan which reveals a bleed into both ventricles of his brain. Mum and Dad are shattered. Matthew on the other hand, continues to soldier on as if there’s no problem. All his signs look great, and he’s breathing without too much assistance. (He’s on the ventilator, but breathing it 20 breaths faster than it’s set). Dad helps with Matthew’s diaper change, and a cotton wool bath.

Day 3 – 9/8/08 – Saturday
Mum is starting to feel a bit better. She gets transferred to ward 3, room 30. So does Dad. Once again, the midwives are awesome. They seem to be able to handle any situation, ensuring that Mum is as comfortable as the situation allows. Around 5pm, Dr D, one of the paediatricians’ comes up to see Mum and Dad. Matthew has had a pulmonary bleed. His lungs have filled with blood and he’s been hooked up to some serious machinery. It is the beginning of a long and arduous night for the new Jones family. Matthew’s now on serious oxygen, but stable. The doctor has told Mum and Dad that the next 12 hours are critical, and Matthew may not make it through the night. Mum says a prayer.

Day 4 -10/8/08 – Sunday
Mum’s feeling a lot better physically, but emotionally, Mum and Dad are train wrecks. Matthew is stable in the morning from the previous days events and starts to improve. He’s a real fighter. Some time after lunch, he crashes again. So do Mum and Dad. By the end of the day, he’s on 100% Oxygen and 10ppm Nitric Oxide. Dad says a prayer.

Day 5 – 11/8/08 – Monday
When Dad goes down to see Matthew in the morning, he’s slightly improved. Still low oxygen saturation and on a lot of oxygen and nitric. As the day progresses, Mum and Dad’s emotions improve with Matthew’s condition. At around 2200, Matthew’s down to about 30% oxygen, and 8ppm nitric, and weening at 1ppm every 4 hours. His spO2 is around 90ish, which is great. All in all a pretty stable day. Mum says a prayer.

Day 6 – 12/8/08 – Tuesday
Matty’s blood pressure is down. Dad doesn’t really know what it means, but they give Matthew some dopamine to raise his BP. Dad is impressed by their ability to control the situation. Sometime that morning Matthew’s BP drops again, and they have to double the dose of dopamine. Fortunately, after a while they are able to drop it down again.

Just after lunchtime, Dr G, Matty’s paediatrician stops by to talk with Mum and Dad. She says that she’s been talking with the other paeds and that whilst Matty’s stable, he’s not making any progress and he has lots and lots of problems. She tells Mum and Dad that Matthew is going to have another tough 12 hours as he’s not passing fluid properly, his liver is still no better and his heart has become a problem. His only saving grace is the breathing. This leaves Mum and Dad in a very sombre mood. A mix of frustration, sadness and desperation takes over the new parents. Dad’s visiting Matty almost hourly at this stage, and during the afternoon Matthew’s breathing continues to improve. Also, he starts passing fluid again. The night team decide to slow down the weening process off nitric to 0.5 ppm / 4 hours to minimise the risk of crashing. At around 2300, Mum and Dad go down to see Matty and wish him a good night, and tell him how much he’s loved. A small trickle of pee in response provides an amazing glimmer of hope. By this time, everyone’s praying almost all the time.

Day 7 – 13/8/08 – Wednesday
Matthew is stable overnight. The weening off nitric continues. By 1340, he’s completely nitric free… by 1530, he’s off the oscillator and onto a conventional ventilator. Mum and Dad mark this as a major milestone to his progress. A little while later, his arterial sensors seem to start playing up, and are switched off. This means no reasonable BP measurement which makes Dad really concerned. Sometime, however they’re going to run another one, probably into a leg or arm artery. Dad is going to go home to his own bed tonight.. hopefully this will mean Mum goes to sleep earlier and gets better sooner – but before he leaves, he’ll be down to see Matthew to make sure he’s ok, and that he knows he’s loved.

Day 8 – 14/8/08 – Thursday
Mum gets a good nights rest, but the nurses tell her that she is probably going to be there one more night. She is not happy with this and waits for the doctors to do their rounds and she will have a chat to them. Matthew has a busy night. They try a few times to get the arterial line in, but fail each time. Looks like he has his Mum’s blood vessels. Thankfully, that morning, they manage to get a successful line in and his blood pressure is doing great. They take him off the Dopamine and see that he finally has it under control without any medication. The paediatrician informs Mum and Dad that they are going to give Matthew a day of rest. This makes both Mum and Dad calmer. The doctors don’t come to see Mum so she gets the nurse to call one in – Mum wants to go home and sleep in a comfortable bed. The doctor lets mum go home, but she has to come in daily for check-ups.

Day 9 – 15/8/08 – Friday
Mum and Dad don’t even have breakfast, but they are already at Matthew’s bedside. He is doing really well. Even the paediatrician who thought it might be grim, is surprised by how much of a fighter he is. They are going to replace his umbilical venous line as another canular in an arm or leg – standard procedure apparently. The doctors inform us that they are giving Matthew another day of rest. The bleed on his brain has not yet cleared, which is neither good nor bad. It just needs time. Mum and Dad are just happy that it has not gotten worse. Meanwhile, Dad has gone crazy with printing the photos he is taking of Matthew. They are put up everywhere in Mum and Dad’s little unit. When Mum and Dad go to say goodnight to Matthew, they have already replaced his venous line into his arm. He now has tubes coming out of each limb. They have also turned off the part of the ventilator that triggers a breath for him. He is starting the breaths all on his own.

Day 10 – 16/8/08 – Saturday
Matthew gets another day to rest.

Day 11 – 17/8/08 – Sunday
An exciting day today for Matthew. At around 1330, the ventilator is taken off, and Matty’s put onto CPAP. Dad gets to see Matthews face for the first time without tubes, even if it is only for a couple of seconds. Matty does well on the CPAP for a few hours, but after a little while, he needs a rest, and is re-intubated and put back onto the conventional ventilator. Also, a minor infection troubles the doctors a bit, and they put Matthew back onto some antibiotics. Mum and Dad are told that it’s likely that Matty is going to have to go through about 5 or 6 courses of antibiotics before he’s going to be well enough to fight off infections by himself. Today also marks the day when Matty’s coagulation tests come back almost normal which is a really good sign, as this has been a major concern all along.

Day 12 – 18/8/08 – Monday
Mum and Dad go to visit Matty in the morning, and it appears his infection has cleared up. Today, the consultants change over for their fortnightly rotation, so it’s quite a thorough ‘rounds’ that Dad gets to sit through. All in all, Matty’s going pretty well. Monday night, Matthew gets a blood top up. All that blood that they take for all those tests needs to be put back every now and then, and on this Monday night, Matty gets 11ml. Babies of this size usually have somewhere between 30 – 40 mL of blood, so 11ml is a real boost to the system.

Day 13 – 19/8/08 – Tuesday
Matty’s coping quite well. Today he starts to take mum’s milk. Sure, it’s only 2ml/day, but by the evening, the doctors decide he’s handling it well enough to be bumped up to 4ml/day. Having to get up every 3 hours to express milk for Matthew is suddenly realised as being worthwhile.

Day 14 – 20/8/08 – Wednesday
This morning, Mum changes Matty’s nappy.  Aside from a nasty case of nappy rash, Matthew seems to be doing fine. His little belly button scab comes off during a clean. Somehow he’s managed to damage his IV line, and this is going to need to be replaced. He’s also got a lot of gunk in and around his mouth and down his breathing tube but the nurses clean it up for him. Once again, his feed amounts have been bumped up to 6ml/24 hours.