A difficult 72 hours

As you know, Thomas has been having lots of Apneoas and Desaturations because he stops breathing. The doctors think that this is being caused by Reflux. This is a kind of acid indigestion that can end up in Thomas' throat because the muscle above the stomach isn't strong enough to keep the contents down. They want to be absolutely sure especially as some of the episodes happen hours after his last feed and have decided to carryout a PH study on his stomach on Monday. This involves putting a probe down into his stomach to monitor the acids and reflux over a 24 hour period. The only problem is they need to take Thomas off all the drugs which help the reflux 48 hours prior to the study.

The drugs were stopped last night and as we anticipated, Thomas has been very poorly today. He has had numerous Apneaos and Desaturations, many of which required the help of doctors and nurses to restart his breathing. We are obviously not looking forward to the next 72 hours of stress and worry but appreciate that it is needed just in case Reflux is not the only cause of Thomas' problems. Hopefully, it is just Reflux as we don't really want to have to deal with having to find another cause. One thing's for sure, Thomas is a little fighter so we can only hope that he will continue to fight despite having had to deal with so many difficulties already.

The room at the end

Thomas is in the room at the end!! He was moved on Monday night along with all his other friends from high dependency because they wanted to give the room a deep clean so it's not entirely deserved however, we've been told we're not moving back.

As Thomas is still having episodes of Apneoa, he was put on a special monitor for 12 hours on Monday night to track them. The following morning the results showed he'd had 370 desaturations!! Over 80% were minimal however, some of the others were quite bad so the doctors have decided to put him on nasal cannular at night time to help support his desaturations. We know how unhappy he is with anything up his nose and are also slightly paranoid because excessive oxygen could cause damage to his eyes so are monitoring this closely.

Today Thomas has been quite alert and has breastfed twice really well. His nurse also noticed that his heart rate was quite fast particularly after he was given his daily dose of caffeine - this helps to prevent Bradycardias (saturations and heart rate drops). As Thomas hasn't had one of these for a couple of days, they've decided to stop giving him this. This might also help his Reflux because Caffeine is an irritant which in turn might help his desaturations.

Wednesday is also weighing day and Thomas continues to grow steadily as he now weighs 4lbs 8ozs (2.038kgs). Here's a picture of Thomas and mummy taken today.

What a weekend....

Thomas has traded in his incubator for a cabriolet, that's right, he's moved into a cot!! What's more, he's no longer on C-PAP and being fed every four hours. All this since Friday night so it's been quite an exciting weekend for us parents. We were once told that premature babies do have a habit of suddenly putting all the pieces together but hadn't really believed it until now.

He still has some problems with reflux which causes apnoeas but they have decreased since Friday too so we're hoping the drugs are finally working.

Being on four hourly feeds is also good for breastfeeding since Thomas gets a little hungrier between meals and is happy to find milk from another source. Learning to breastfeed is one of the prerequisites to coming home along with maintaining his own temperature and not having any apneoa episodes. He doesn't seem to have a problem maintaining his temperature but we've still got a little way to go on the others so I don't think Thomas will be allowed home for a couple more weeks yet.

Thomas' friends have also been doing well and both Tom and Jack have been taken off C-PAP too. Aayla, the little baby girl born 15 weeks prematurely has been doing so well and is going home today or tomorrow. She's actually got roughly the same gestational age as Thomas but was lucky enough not to have any serious problems so is going home even though she's still five weeks premature!

We've had some new additions to the ward as the unit received triplets just over a week ago and two of them have already been promoted. All three were born nine weeks premature and are named Gracie, Ella and Lauren. Ella is a little poorly as she has some fluid on the lungs which has to be drained externally through drains which are attached to her body. She started with four but already has just one left.

Here's a picture of Thomas (now weighing 4lbs 5ozs) enjoying his new residency...

Thomas' ABCs - Apneoa, Bradycardia and C-PAP

For the past few days, Thomas has been doing well off his C-PAP, managing 9 hours off and having 5 hours on to recover. Throughout this time he has been suffering from regular Apnoea and Bradycardias. Basically, Thomas' breathing slows down and sometimes stops, this causes his Oxygen saturation levels to drop and finally his heart rate to go down from 160 bpm to about 70 bpm. Sometimes these have got extremely low and all the alarms have gone off but so far he has been able to correct himself by being given a whiff of oxygen and a bit of stimulation.

The doctors and nurses seem a bit mystified as it can be caused by various things so they can only treat one at a time and see which works. At the moment, they are treating him for reflux where some of the milk and acids are brought up after feeds, causing respiratory problems. He's been on one of the drugs for two days and today they've started another as there hasn't been any improvement. Not all the Apneoas are after feeds though so they've taken some bloods today to do some more tests. The last and most worrying could be his brain not functioning properly as a result of his brain bleed however, Apneoas are quite common amongst premature babies and they grow out of them so we're hoping that Thomas will simply do this.

In the meantime, we've just got to grin and bare it which after everything else should be a walk in the park - I wish it was that easy!!

Since I wrote this afternoon's post, Thomas has had a good afternoon so we're hoping this will continue overnight and the number of Apneoas will decrease. The doctors had also done some blood tests and another headscan this afternoon as part of their investigations. His initial blood test was normal but they have sent off samples to the lab for further testing. However, the best news of the week is the swelling in the left ventrical of his brain has substantially decreased and although the swelling in the right ventrical remains the same, it does appear to be showing signs of absorbtion so we're hoping the next few weeks will see more improvement.

Here's a couple of new pics of Thomas showing us his new facial expressions!!

Thomas' Team of the Month

With Thomas' favourite football team ending the season in the usual uneventful fashion by trying desperately to get themselves into the relegation zone, Daddy has decided that it is time to expand his sons sporting world. Thomas' link is now to his team of the month and this month, to celebrate their derby victory today over Barrow, Daddy has chosen Thomas' favourite rugby league club (Grandad John's favourite team too). Can you guess who it is? Go to the link to find out.

Here's Daddy's favourite boy contemplating another City defeat!

Bath time

Today Thomas had his first bath. He seemed to enjoy it and didn't cry at all. He also managed 9½ hours off his C-PAP and was so tired, fell asleep straight away. As promised, here are a couple of snaps.

Promotion!!!

After six weeks in intensive care, Thomas has finally been promoted to the next room!! He's now in high dependency along with Jack, Tom, Joshua and Aayla (all babies that he met in intensive care).

This morning, the long line was taken out of Thomas' leg as he is back on full feeds of mummy's milk so doesn't need to be given TPN . He only needs his saturation probe now to measure his oxygen saturation but even this is improving daily. His nurse (Aunty Audrey) has decided that he could manage more time off his C-PAP too so will be doing 10 hours off and only 2 hours on today. She's hoping he'll manage without it completely tomorrow and will be in a cot by the weekend!!

We are still amazed by his transformation in just two weeks. And guess what, he will be having his first bath this afternoon - his parents are rather excited by this prospect however, I doubt Thomas would feel the same if he knew.

I'll update the blog later with a photo of his first bath but here's one I took this morning.

Three days of bliss

It's been three days since the last diary entry and that's because Thomas is doing so well. He is now off his C-PAP for up to seven hours at a time and coping really well. His feeds have increased to 7mls every two hours and the doctor thinks that if the NEC was to become a problem again, it should have done so already. However, we don't want to get too excited as he hasn't actually 'opened his bowels' yet but what an interesting cause for celebration that will be!!

Thomas was weighed again yesterday and now weighs 1.522kgs or 3lb 5ozs to those that think a kilo is a kind of pastry. He seems to be changing daily and developing some of our characteristics already though I can't imagine where he gets that frown from!!

Yesterday Thomas was visited by Roger, Gill and Emily although Emily wasn't allowed to meet Thomas as the unit doesn't allow children in to visit unless they are a direct sibling. Emily is particularly excited about babies at the moment as she is looking forward to meeting her new brother or sister in a few months time though couldn't make up her mind which she'd prefer. Juliet also visited and was quite taken with little Thomas especially when he managed to pee all over his daddy as he was trying to change his nappy.

Today's pics were taken when Grandma Brenda and Grandad John visited - all together, aaaahhh.

The amazing team supporting Thomas

Thomas is still going strong. He's now being fed 3mls of milk every two hours. This doesn't sound very much but by increasing the milk flow slowly, hopefully the intestine will start working again and won't rupture. Yesterday, grandma Brenda had a lovely cuddle with Thomas as she's come all the way from Cumbria to see him.

Since Thomas became ill, you will have noticed that this took up all the editorial space in the blog so there has been little room for any other information. Now he's hopefully improving, we thought you'd like to know more about the unit. Thomas is still in the intensive care unit and is known as the old man of the ward as he's been in there for the longest. He has lots of friends in the ward including Oscar and Tom who are situated in the incubators next to him. Tom is one of the twins, you might remember that his brother Jack was very ill and had to be sent to London for an operation on his tummy because he also had NEC. Jack has now returned and was upgraded yesterday to the next room because he's doing so well.

Thomas is looked after by lots of nurses who are usually senior staff nurses or sisters. They encourage mummy and daddy to change Thomas' nappy, clean his face and mouth and give him lots of cuddles. They are also excellent fun to be around, always happy and extremely helpful. There are around 7 or 8 nurses on each shift of 12½ hours and altogether around 40 nurses. Consultants work two week stints at a time, handing over to another consultant at night and at the weekend (sometimes they work through). There are five consultants in total and a team of 20 doctors providing 24 hour care.

Now you've learnt a little bit about the unit, here's another photo of the little boy they're looking after having his mouth cleaned!!

Chubby cheeks

Thomas has been improving every day and is looking much like his old self, if not a little more chubby. He started to be fed today though is only getting 1ml every two hours so nothing substantial. Once the doctors are happy that the inflammation has subsided and his intestine can cope with milk, they will start to increase the quantity.

The other good news is that Thomas has manage two hours off his C-PAP machine already!! Obviously it is still early days and once we've overcome this hurdle, the next one will be his swollen brain so we're still climbing that mountain.

Tonight's picture sees mummy having a lovely cuddle with Thomas.

Where's my dinner!!

The weekend has brought even more good news. The doctors said that they had been unable to grow any cultures using the spinal liquid that they had taken during his lumber puncture which meant that he didn't have a nasty infection in the brain. Also his CRP figure was continuing to drop indicating that the infection was definitely subsiding. The next bit of good news was that his bowel was beginning to sound normal. Later when mum changed his nappy, he had well and truly messed it so she was sure his bowel was moving. However, until he starts to feed again on Wednesday, he is not quite out of the woods. He is still being given three antibiotics as well as a cerebral drug to prevent fits.

On Sunday, they finally decided to try and take him off his ventilator and put him back on C-PAP. There was no way of telling if he would be OK, it was purely "have a go and see what happens". We had to wait for a couple of hours for Thomas to have another line put into his hand (he'd managed to bend the old one!) and receive his morning coffee in the form of a caffeine hit to help stimulate his breathing. Finally, the time came and within an hour he was breathing like an angel. When we returned that evening, he was still doing brilliantly.

This morning, mum got a lovely cuddle with Thomas for a whole hour and he didn't even desaturate once, unlike the last time when he had to be resusitated in his mother's arms!! Later today, he got weighed and is continuing to take after his father putting on another 100g so now weighs 1.42kgs (3lb 2oz in old money).

Today's picture see Thomas having a half hour break from his C-PAP looking much more like his old self though rather hungry (only another 36 hours to go before his next meal). Funnily enough, he is known as the old man of the unit now being the oldest baby in there!!