The first week

It's been five days since Thomas was broken out of hospital. We've had a busy few days getting used to having him home. He's doing everything he is supposed to really well - sleeping, eating, crying and pooing and is still putting on weight as he is now 5lbs 13ozs. He also reached his official due date on Wednesday so has a corrected age of just 3 days today, aaaah.

We had a slight emergency on Thursday night/Friday morning because Thomas came out in a bright red rash all over except in the nappy region (not nappy rash then). He was also very warm to touch but quite cool when we took his temperature. We decided to be cautious and take him to the doctors. They were worried that it could be a virus and suggested we take him to hospital. Off we went again but this time to the paediatrics A&E at St Peter's Hospital. After seeing a student nurse, a sister, SHO and finally a Registrar who then called our consultant, they decided that it was a virus and unless he developed a high temperature or loss of appetite it was fine to go home. Overnight he was a little unsettled but this morning the rash has gone down which is a big relief.

The doctors explained to us that Thomas is likely to be very susceptible to catching viruses and diseases because he missed out on getting any antibodies in the womb as babies normally receive these the final trimester of pregnancy. For this reason, we are going to have to keep Thomas away from small children and sickly adults for a bit longer, just in case they pass on anything to him. He is due to have his second shot of immunisations next week and once he's a little bigger, his body should be strong enough to fight off minor viruses so we can relax a bit.

As you can see from today's picture, Thomas was tired out from playing on his new playmat that he was given by everyone at Caspian.

We love Gaviscon!!

After last weeks disappointment, it was decided that Thomas should be given thickener in his bottle feeds or before any breastfeeds to assist his Reflux. However, after a couple of days, Thomas seemed to lose all interest in breastfeeding because the thickener seemed to fill him up. By Friday, we were considering moving completely over to full bottle feeds because he would be at risk of losing weight and this would be another reason to extend his time in hospital.

Thankfully, when the nurse told the doctors this at the Grand Round (the weekly get together of all the consultants, registrars and doctors) they decided that this would be a huge shame and instead of Carabel, prescribed Thomas a small dose of Gaviscon following each feed.

Almost immediately, Thomas started breastfeeding well again and by Sunday had gained another 5ozs reaching a mighty 5lb 9ozs. We were allowed to stay in the parent's accommodation again and Thomas stayed in the bedroom with us. Initially we were going to stay for two nights but ended up staying for four nights because we didn't want to leave him.

The last hurdle was a repeat of the desaturation test. They did this on Sunday night and although he still had over 400 desaturations, none of them were low. The main difference when compared to the previous test was that when he did desaturate, he was able to bounce back up to normal much quicker.

Monday morning arrived and we waited patiently for his consultant to come and review the test....and yes you've guessed it, he passed!!

Thomas was finally discharged late Monday afternoon after they had done all his paperwork and dispensed his drugs. He needs to take one once a week, three once a day, one every six hours and one after each feed so you can imagine how many we've got!

We were elated and couldn't believe that after 12 weeks or 83 days to be exact, we were finally going to bring home our baby boy. To be honest, the last few weeks have become a bit of a blur which is probably a good thing and if we ever need reminding of how lucky we are, we've always got this blog.

In a funny way, we are a little sad to leave hospital because we've made some great friendships with other parents, doctors and nurses. However, we will continue to keep in touch with Martin & Tilly; Safina & Mushood; Debbie & Gill and look forward to watching all our children grow up together especially since they all had such a traumatic start in life. Come on Jack, Tom and Dan, Thomas can't wait to until you escape too!!

Before today's pictures of Thomas going home in his special carrycot which can go in the car, there's just one final thing to say and that is THANK YOU to you all for your support and kind thoughts. Without them, I don't think we would have coped quite so well. We have obviously thanked all the NICU staff at St Peter's Hospital already but I think it would be fitting to say THANK YOU to them again on this blog.

Now the fun begins and Thomas can't wait to meet you.....

Butter wouldn't melt...

Aunty Gill, one of Thomas' nurses, is always saying this and we thought today's picture really fits the bill.

There's no more news on Thomas' release date since the parole board said no earlier in the week. Let's hope this doesn't become a habit later in life!! We're going to stay in the hospital for the next couple of nights just so we can spend lots of time with Thomas.

At the weekend, his Uncle Johnny is coming to visit and cheer up his parents so before we know it, another week will have passed and the parole board will be meeting to discuss him again. Keep your fingers crossed......

Yet another setback..

It's beginning to feel like Thomas will never come home with his parents. Last night, Thomas had another saturation test done overnight and this morning, the nurses were all set to send him home. Unfortunately, the doctors decided otherwise. They feel that the desaturations that are occuring during his feeding times are too numerous and too low. The cause is still Reflux and although they have the acid in his stomach under control, he is still vomiting up some of his food and this is causing the problem. They are now preparing to add a thickener to his milk to try and stop his vomits. They will then carry out another test next week to see if this makes a difference.

If this doesn't work then the only other alternative is to operate on his oesophegus and tighten up the muscle between this and his stomach. Obviously this is not what we wanted to hear after all he's been through and would be quite a serious setback as it would probably take some time to re-establish his feeding and no doubt have a long recovery time. As before though, all we can do is be positive and hope that it won't get this far.

Nearly coming home

Last night, Thomas had his desaturations monitored over a 12 hour period to see if the new Reflux drugs were helping to reduce them. Overall, he still had around 400 desaturations but most of them were fleeting. However, there was one big one that needed some help from the nurses.

Therefore, they have decided that it is not quite safe enough for us to bring him home though the nurses think that by the middle of next week, the new drugs will definitely be working so we should see more improvement. They will carryout another test overnight on Tuesday to check and with any luck, he will be home by the end of the week - hurrah!!

We are spending the next two nights in hospital again but this time, Thomas will be in our bedroom so we are really looking forward to spending this time with him. His dad will be working during the day so he'll get a taste for what it's going to be like in the long run!!

Here's a picture of Daddy giving Thomas a bath.

A busy week

It's been a busy ole week. We stayed at the hospital for two nights on Wednesday and Thursday to get Thomas used to breastfeeding on demand. He stayed in the nursery and mummy had to get up at all times of the day and night to go and feed him. The nurses would come and knock on the door when he was waking whilst daddy snored on oblivious to it all - he did have to go to work on one day. The two days went very well and Thomas seemed to get the hang of it quite quickly waking roughly every four hours.

The results of Thomas' PH study were conclusive in that it is definitely reflux. The test showed that he was refluxing 18.4% of the time which is rated as moderate to severe. At one point, he was refluxing acid into his oesophegus and throat for 30 minutes continuously!!

As a result of this test, the doctors have changed one of his drugs to a much stronger type normally taken by adults but obviously in a much smaller dose!! This drug is designed to reduce the level of acid production in his stomach and he is likely to need it until he is weaned onto solids in 4-6 months time.

Thomas also had his eyes and hearing tested this week. An earlier eye test had shown a slight problem in his right eye but this has subsequently corrected itself. His hearing test showed no problems too.

Again, these are all little steps towards going home. Today we were told that pending another overnight study of his desaturations, to see if the new drug is helping, and us staying in for another couple of nights, Thomas might be allowed home by the weekend or early the following week. It will be 10 weeks since Thomas was born this week so I'm sure you can imagine how hard it is trying to contain our excitement. Until he is physically in the car with us though, I don't think we'll truly believe it. We will be staying in on Thursday and Friday night and Thomas will be in the bedroom with us, this time his daddy will be getting up to help though!!

Here's a picture of Thomas looking very cute having his hearing tested wearing the cardigan that his Grandma Brenda knitted...

One step closer to h...

Thomas did better than we anticipated during the 48 hours off his Reflux drugs. He was given some thickener in his milk which has definitely helped. The long awaited PH test commenced at 3am this morning and when we left at 7pm this evening, apart from a tube up his nose and down his throat which makes it a little harder to breath, he was doing really well. As I'm sure you can appreciate (and touching wood!!), this is a huge relief to his parents who were up at the hospital until past midnight keeping him company.

This morning, one of the senior sisters (Aunty Gill) suggested that it could be helpful to Thomas' progress if his mum stayed in the hospital and attempted to breastfeed him on demand for a full 48 hours. Of course, mum has quickly jumped at the chance to spend more time with Thomas.

The NICU has four bedrooms with a small lounge, microwave and sink which the parents are allowed to use if their baby is very ill or just prior to them going home. Lindsay & Scott, parents to the triplet girls, are currently staying in because they live in Hove which is a bit too far to come every day and will be good company for mum when she isn't breastfeeding at all times of the day or night!

Thomas had his first visit from his Uncle Luke on Sunday afternoon and also saw his Grandad Peter and Grandma Katherine again.

Here's another lovely picture of Thomas and his mum.