Tucker time

Yay! All clear for feeds. Started at one ml four hourly for 24 hours and will see how the little fella tolerates it. Also all clear to stop antibiotics in the morning, but due to the cannula in his arm not working it had to be removed, so antibiotics were stopped a little earlier than first thought.

The little man had a little wash down today. He had water squeezed all over him like lemon juice over a piece of fish, and looked much fresher afterwards. He seemed to enjoy the whole experience and fell fast asleep as soon as we were done. Daddy did a good job, but mummy was a bit afraid, so let the nurse finish him off.

Grandpa James has had a very nervous little touch of Jensen's head, and grandma Jackson has had a couple of highly anticipated touches today. A little hand hold was even possible due to the removal of the cannula. Grandpa Jackson is still waiting for his little cough to subside before his turn.

Overnight Jensen did a little poo which is a good sign things are all up and running again. Today we are increasing feeds to 3.3ml four hourly, and should that go well the surgeons and doctors are looking at an ambulance ride back to RNS sometime tomorrow. Yeehah! We can't wait to get back 'home'. This has been the most exhausting week of the last ten. Here the days are long, we can't sit beside him all day, we can't nip home for lunch or dinner, there's nothing around here to do to break up the time, except for eat from the vending machine, the parent lounge is small and overcrowded and there are minimal other rest areas...the drive here and home is long, and this place is full of ferals. The doctors and nurses are fantastic and lovely, but we are ready to go back home to our own medical team. Mummy has even given them a call to pre-empt the situation and to make sure there is a bed available for him, and thankfully there is.

Little man is not happy with the tube placement again today. He had a new one fitted a day or two ago, and he has started having braddys again today. All his stats are perfect...or even a little too good, so the problem is merely mechanical again, and Jensen is so particular with the darn thing. They were thinking of putting him back on CPAP but I was worried they wouldn't transfer him home on it. They said they could but he'd just have to prove himself. Anyhow, they've ended up leaving him on the ventilator.

We bumped into one of Jensen's neighbours from RNS today. He's here to have the same operation as Jensen. Hopefully our words and experience have lessened their nerves and worry a little. We think they sent him here because of Jensen. His hernia he'd only had for three days, and on the third day doctors had some trouble reducing it, so his bags were packed and off he went to Westmead. I believe Jensen and his little journey so far will continue to be an example for others to come.

He just looks such a happy little boy now. He's been smiling a lot, even when he's sleeping. Poor little thing must have been uncomfortable and in a bit of pain previously, but now looks quite content.

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Enough is a muff

When we arrived yesterday morning, little man had ear muffs on....it's so noisy in this place. He was having bradycardias often which showed the nurse he was reacting to the amount of noise. He had a new, much bigger, much older, neighbour who was causing quite a ruckus. This coupled with the doctors' rounds and nurse shift change over, proved for a noise not dissimilar to a construction site for the poor little chap.

Last night when we left he was looking quite chubby, again just fluid from the surgery, the platelets, and just general goings on of the last week. They don't always like to give lasix as they drain all the liquid and this can lower sodium and potassium levels, but overnight they did as he had another blood transfusion. This was to top him up as his haemoglobin level had dropped to 87 and they like it to be around 100. Again this is because of the amount of blood they are taking for gases and full blood counts etc.

The surgeons have visited this morning and are just waiting for Prof Cass to give the all clear for feeds. His tummy doesn't look swollen at all now, he has a good colour, and is pooing and weeing like a trooper again. I think they'd just like to give his bowel a little more rest. I think he's hungry now as he gulped down four milk soaked cotton tips yesterday afternoon. Little piggy.

Again he's having lots of braddys this morning, and whispers of a return to Royal North Shore were heard. This means he's not happy with the tube, and it has quite a large leak which essentially means that he is doing most of the work himself rather than the ventilator. He is not ready to be extubated as yet and needs to remain ventilated for the ride home. Not counting our chickens though, but today would be a good option as it is not a public holiday, and NET staff availability may be higher now rather than in the next couple of days. Anyway, instead they are removing the tube from his throat and placing one in his nose instead. It is still the same type of respiratory support, but with less movement and chance of leak. They are hoping this will cease the frequent bradycardias.

The thing with NET (Newborn Emergency Transport) is that babies requiring transportation for surgery are priority, not ones who just need a ride home afterwards. They also cover the whole of New South Wales, so if they had one in Newcastle or Wagga they'd take priority also.

I told Jensen last night that he doesn't belong here. There are so many sick little ones here requiring or recovering from surgery, mainly newborns. They don't see a lot of preemies. Now that his surgery is done and he's recovering well and pooing, we just need to start feeding then hopefully get out of here. His morphine is now on 10, his sugars are good, he is saturating high on 30% o2.
Feeds won't start until tomorrow, then it will start at one ml four hourly and go up in increments of 15ml per kilo. Once he's done a poo and the doctor and surgical team are happy will be on our way north again.




Daddy and I bought Jensen's car seat today, we found the one we wanted for a fabulous price...very exciting. Thank you to grandma and grandad Jackson for helping us out with that purchase. This was the most exciting purchase I've ever made....it means that we know Jensen will be coming home.
Oh and Grandma James even got a little pat today as the nurses here appear a little more lenient with the 'no touching except parents' rule. Grandpa James and Grandma and grandad Jackson's turn tomorrow. Exciting times...

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A poo or two

I feel a bit nervous being so far away from Jensen at the moment. We called just before we went to sleep to check on him. He had done a poo!!!! Yeehah....Phil and I high fived and went off to sleep happy.

Oh what a relief, literally for him and emotionally for us. A good size poo too and some mucus, so his bowel has cleared the blockage, and is up and running again. Now the air can gradually follow, as his tummy is still large, but nice and soft and is thought to be just fluid. The blockage was in the bowel loop of his hernia, so I can imagine he is feeling a whole lot better. He looks very happy and alert today, more like his little self. They are now weening him off the morphine (has dropped from 16 to 12 so far), they have also lessened his respiratory support as he is breathing a lot on his own, and will gradually stop some of the antibiotics as he is regulating his temperature again. His oxygen requirements have also lessened. So he's doing all the right things, behaving very well, and keeping the doctors, nurses, and surgeons happy.

We returned from lunch to find that he had done another poo, and in front of the surgeon nonetheless so he had a good look and was very happy with it. They will give his tummy a rest for another day or so and recommence feeds then at 1ml four hourly. I guess then we'll wait for it to come out the other end and then send us on our merry way. The doctors and nurses from RNS have been calling and texting asking after Jensen which is lovely, and say that he never stops surprising them. I told them they'd have to rewrite some medical journals....

He still looks very chubby, but it's mainly from fluid. He had a platelet transfusion both before surgery and yesterday and this can make them a bit oedematous. He has been weeing a lot though which is great, he is weeing double the amount they would be happy with, and has suddenly been letting the nurses know he is not appreciative of having a sodden nappy.

The Easter bunny paid us a visit today and the three of us had our photo with him, he gave Jensen a little blue toy bunny. This is the second Easter treat he's had in as many days...some Lindt bunnies previously, but there seems to be one missing...daddy??.

Jensen is continuing to win hearts all over town. The nurses here have said they can see why he's such a favourite at RNS. Nurse Catherine even called us as we were arriving back from a hospital break to say he was so awake and beautiful we had to come see him.

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The waiting game

After a day of some misbehaving, we are still at Westmead. Little man has been having some bradycardias and desats (rapid drop in heart rate and oxygen levels). They played around with his respiratory support, morphine levels and antibiotics, administering another as his temperature had dropped and wasn't coming back up. Now the little man is on 4 or 5 antibiotics (I've lost count), and morphine. His sugars had also dropped so they were boosting him with some, and have ended up giving him a dose of a hormone that produces sugars, Hydrocortisone I believe. This has settled down his sugars. It's all a fine balancing act of TPN, fluids, lipids and so on...on top of all the medication and sedation.

Jensen wasn't letting anyone touch him, change his nappy, and in particular touch his tummy. For this reason the doctors started talking about more surgery. Not again! He wasn't looking very happy or well and it was something we were hoping wouldn't have to be done. The surgeons seemed happy with the X-ray, and could just see some old poo that needed to come out which then all the trapped air would follow, but the doctors and nurses still weren't happy, so the head surgeon who did the operation came to visit. The only reason he said he would opt for more surgery would be if there was a perforation in his bowel, or some dead gut....both of which Jensen was showing no signs of having. So phew! No more surgery.....

He's been a bit groggy, as you'd expect after surgery (especially when you only weigh just over a kilo), and has been a bit cranky. He would feel the little cut he has and essentially his bowels have been moved and manipulated by adult fingers so I can imagine would be a bit unhappy. The professor says they are a bit irritable and haemorrhaged, which is normal after this surgery and now they have been put back into place, should repair themselves nicely, but just need some time to recover. It hadn't even been 48 hours since surgery. He needs to get this poo out....and then hopefully he'll feel a whole lot better, and we can all get ourselves back to the comfort of Royal North Shore.

It's not very nice here. It's certainly not a few months old like RNS. It doesn't feel as clean and hygienic here (although I'm sure it is) and it definitely feels like a hospital. They can take up to 29 babies here in Intensive Care, High Dependency, and Isolation. All babies here are waiting for, or have had surgery, some are very sick, dying, or deformed, so you can imagine the atmosphere here is not always nice. It's much smaller and much busier too. Babies are right close to each other and there is a lot going on. There is room enough to sit beside Jensen, but only for one of us. The staff are lovely and have been looking after mummy and daddy, as well as Jensen. They keep offering us accommodation as we are not too close, but after one night at my parents we are back home and making the commute as Phil's lovely boss has given him a 5 day weekend.

We are hoping and wishing to be back before Easter is over.

After my little surgery

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The wheels on the ambulance

So the past couple of days have been a bit hectic, hence no blog entries for a while.

As you know little man wasn't well and ended up coming down with an infection in his bowel and a distended tummy on Saturday night/Sunday. On Monday morning Jensen was transferred to Westmead children's hospital to be close to the surgeons should he need his hernia operated on. At that stage it was a precautionary measure, as Dr Mary had a lot of trouble reducing it overnight.

I called Phil to let him know NETS were coming to pick Jensen up and before I knew it they had arrived. Phil hadn't even turned up yet. We knew it was a long process so thankfully daddy turned up in time. He wasn't handling being touched very well at first, but had the best of the best doctor with him upon transfer. Mummy rode shot gun in the ambulance with Jensen in his transportation device in the back with the doctor and nurse. I've never been so nervous in a vehicle (nor have I been in an ambulance) before.

We arrived at the hospital, shortly followed by daddy, and were set up in the NICU there, called Grace Ward.

The surgeon came to look, and was able to reduce his hernia so said there was no need for surgery. Phil and I breathed a sigh of relief. They were just going to keep an eye on his tummy. Next thing we knew the head surgeon came to see Jensen and bam ... he was on his way to theatre. The surgeon seemed very blasé about the whole thing which made us feel more at ease and we were both strangely calm. It was just a case of looking at his bowel through an incision in his abdomen if necessary and while they had him there were going to fix up the hernia. A two hour procedure by a very confident team. Phil and I said 'see you in a little while' to our Jensen and began the wait. We sat outside and prayed to our angels and looked strange, I guess kissing our phones (Jensen screen savers). We then sat in the car biding the time.

At around 10pm we hadn't heard anything. It had been 2 hours. We headed back into the ward and were told he didn't leave for theatre until 9pm. So we went and waited nervously in the parent lounge. I got the call at 11pm to say that the surgery was complete, he was fine, and on his way back to the ward. The surgeon had then got called into emergency surgery so we waited another hour or so for her to come and gives us the details. She said they didn't go into the abdomen as his bowel looked ok and they believed the hernia to be the issue not NEC. The hernia had been reducible initially, but in theatre there was a bowel loop under a knuckle of bowel that had not been reducible, otherwise known as an incarcerated hernia. This is what has been causing him pain. The surgeon tucked up the bowel and closed the hole. The hole is there to allow the testicle to drop, and in Jensen's case, this is where a bowel loop had snuck through. Now that the hole has been closed (his testicle has come through) the hernia shouldn't return. They also found some old milk curd obstructing his colon, so the surgeon massaged it down and we now wait for it to pass through naturally. This could be from the fortification of his milk, and would be the major cause of his distended tummy, and discomfort. NEC stands for Necrotizing Enterocolitis which is when part of the bowel dies and needs to be removed. It can be common in preemies as they are required to commence feeding before their gut is mature enough. The doctors have mentioned this at times of other infections, being that it could be the issue, luckily for us, it wasn't.

We said goodnight to our little super star and headed home for a short sleep. Such a long day.

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Mummy's birthday

Today hasn't been the best birthday I've ever had. We left little man last night with quite a bloated little tummy. The air from the CPAP machine causes them to have a 'CPAP' belly, which is why they put his gastric tube up to allow the air to be burped out. Because his tummy is so full of air it puts pressure on his lungs and he has to work harder to breathe, and starts misbehaving a little.

We got a call through the night to say they had taken 65 mls of air from his tummy and given him an X-ray of his bowel, which showed a pocket of air in one of his bowel loops, which essentially needs to be farted out. They started antibiotics as his infection level had increased and he is now on two lots of antibiotics to catch the infection should there be one. They have stopped his feeds for now and put him back on TPN. Yesterday he had increased his milk to 18 mls two hourly due to his large weight gain..he weighed in at 1330grams. No cuddles today sadly.

We met a few friends and family for a birthday lunch which was lovely, but I wasn't my happy self which I apologise to everyone for. When we returned to the hospital, he had been returned to the ventilator, which we knew was a possibility. This will just make everything easier for him and give him a little rest while his tummy sorts itself out. With this, his oxygen has come down to 22% and he is looking a better colour this evening. He may need another blood transfusion in the morning to boost his blood levels a little due to taking so much of it last night and today. He has had an arterial line put back in to take bloods and a couple of cannulas in his arms for the antibiotics and intravenous fluids. He has had another wee bag put on his pecker to test his urine and has had a swab taken of his skin, just to rule out every possible infection. Poor little tike has had quite the busy day.

I have been very spoiled by friends and family today and am lucky to have such wonderful people in my life. Daddy and Jensen even made a secret trip to Tiffany's with grandma and grandad for a beautiful bracelet and necklace for mummy's birthday. When we arrived this morning there was also a card in Jensen's crib for me, with his little footprints inside (wondering how they got this done without me noticing, and how I didn't see his little red feet after footprints).

Thank you to everyone for sharing their time and well wishes for my birthday today. I love you all and look forward to many happier days ahead with you all very soon. Most of all thank you to Phil for trying to make my day a happy one, loving me and spoiling me. I love you darling.

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A special day

Daddy had today off work so had some cuddles in the morning while mummy did a few jobs. And mummy wants cuddles on Sunday this week instead.

Grandma and grandad Jackson have arrived!

After what seemed like a long wait in the airport arrival lounge, a take away pizza on the way home and a quick shower and change we headed straight to the hospital to see little man. He had a fresh hat and chin strap put on this evening for the special occasion. Lots of loving stares and stayed for cares, so had his bottom on show and his little face without his mask briefly. He even woke up to say hello and welcome to grandma and grandad.

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