The right direction?

What a roller coaster ride we've had this week!! Thomas has been pretty ill and NEC was diagnosed as one of the reasons, his head bleed could also be having an effect. Since the last posting, he has been very inactive and had lots of Oxygen desaturations which often lead him to turn completely blue. Wednesday saw him having a long line put in through his leg for his TPN (nutrition) - this is a long tube put in through a vein and fed up close to the heart so that it can pump the contents around his body more effectively. Thomas also had x-rays, an arterial line put into his other foot and that evening had to have an emergency change of breathing tube when he started having problems. So all in all it was a pretty busy day for him.

Yesterday morning, we heard that overnight he had started to have fits as well. His doctor also told us that he had emailed x-rays of his tummy to the surgeon in London. Things were not looking particularly good and it seemed like an eternity since we had received any good news.

Well some good news has finally arrived.

Thomas' CRP (measurement of the protein levels which are used to indicate infection) has now reduced from 140, on Wednesday, to 40. His X-rays have shown that the inflammation in his intestine has not got any worse and following a second Lumber Puncture, the pressure has reduced slightly which indicates that the brain could be draining itself. However, it's a little early to celebrate though but as the doctor put it, things are moving in the right direction so keep your fingers crossed!!

Today's picture sees Thomas being weighed. He now weighs 2lbs 14ozs and has put on a whole pound since he was born!!

Possible diagnosis

The doctors think they might have found what is causing Thomas' illness. After numerous tests, they have found an infection in his urine and also suspect NEC - an inflammation of the intestines. NEC if not found early enough can be quite serious and usually needs surgery to remove the damaged portion. At this stage, we are hoping that the four antibiotics that he is now receiving will catch this disease early enough so it won't need any further treatment.

He won't be allowed any feed for 7-10 days but is receiving his nutrition through TPN, a concoction of fats, sugars and other nutrients. The only problem is that with needing this, antibiotics and morphine, he's got a tube going into every hand and foot!!

It's been a tough couple of days and quite worrying at times but Thomas does seem to have settled so we're hoping to see some improvement in the next couple of days - will keep you posted as ever.

Clowning around

After getting so far unfortunately we have had quite a big step back today. Over the last few days Thomas has repeatedly stopped breathing (apneoas) as well as refluxing (which is a form of vomiting). The doctors are hoping that these are connected and are treating the cause of reflux (basically too much acid in the stomach) with drugs.

As a result of these episodes, over the last couple of days, Thomas has required constant handling by nurses, doctors and parents, and is exhausted. This afternoon the doctors finally took the decision to put him back on a ventillator, to make him breathe and give him time regain some strength. This also requires Thomas to be given some morphine again. As I'm sure you'll understand, its quite uncomfortable having a tube down your throat to your lungs.

This evening, he is more restful. However seeing Thomas like this does seem somewhat like deja vu. The nurses sent us home early tonight, insisting that we get some rest and suggesting we open a bottle of wine, which we've decided to do. But before we sign off we thought you'd like to see a picture of Thomas resting and dreaming of clowns.

More brain news

Today Thomas is having a lumber puncture. This involves drawing off some of his spinal fluid from his back in the hope that it reduces some of the fluid that is accumulating in this head. Since his brain bleed just after he was born, the ventricals have not shown any sign of reduction. His doctor is concerned that there could be a blockage caused by the blood from the bleed clotting and preventing the spinal fluid from draining. If this is the case, then the excessive fluid could be putting pressure on his brain matter and in time could be much more serious.

Tests will be done on this fluid over the next few days and more scans of his brain will take place to see if the ventricals begin to drain. He may need to have the process repeated a few times. If this doesn't work then he will be referred to a neurological surgeon for a more serious operation but we are hoping that the lumber punctures will work and this won't be necessary.

Over the last few days, Thomas has also had more trouble with his breathing and sometimes when he is asleep stops completely. The doctors are still perplexed by this but are trying various things to improve this problem.

Obviously, we will continue to update the blog with any developments but thank you all again for your kind words and support, it means so much to us.

Still waiting for promotion to the next room

Thomas still hasn't managed to combat his oxygen saturation, breathing and feeding goals just yet. Unfortunately, he's also had to go back on his C-PAP machine a lot more. The doctors are perplexed and are hoping that he will simply overcome this little setback. If not then they will carry out some more tests on him which would include a heart scan to see if the valve that hasn't closed between his heart and lungs is the cause.

We're obviously very disappointed since he was doing so well but the doctor did say that he looks healthy and is still putting on weight. Martin and Tilly are having a tough time as one of their twins, Jack, has been sent to the Chelsea and Westminster hospital for an operation because he has air in his bowel so we are really hoping for a successful outcome for them.

This afternoon, mummy did manage to have a long cuddle with Thomas before he had to be put back on his C-PAP quickly as he got very tired and his breathing and oxygen levels dropped dangerously low.

Here's a photo we took a few days ago of Thomas doing his superman impression!!

C-PAP, can't quite live without it

Yesterday when the nurses tried to put Thomas back on his C-PAP after his eight hours respite, he fought back so hard that the doctors decided to leave him off and see how he did. Well he managed nearly 24 hours before he lungs got too tired and his respiration rate was getting a little high so they decided to put it back on for a few hours. He didn't fight quite so hard this time and was obviously very tired as he fell asleep straight away.

As he's doing so well, he's been out of his little incubator for cuddles twice a day which is doing mummy and daddy the world of good!!

Today's picture sees Thomas supporting a very fetching sleepsuit sized for babies up to 3lbs so a better fit than the last outfit!!

P.S. the little porker now weighs 2lbs 5ozs.

Dressed to impress

Thomas has been very good over the last two days, his oxygen saturation levels have been fairly steady and he hasn't been sick since Thursday. He even had the best blood gas reading yet. They're now slowly attempting to get him onto two hourly feeds again and also increasing his time off C-PAP.

Yesterday, Thomas was visited by his Uncle Johnny who then spent the evening entertaining mummy and daddy so a good day was had by all.

As you can see from today's picture, Thomas is wearing his first outfit. Sized to fit babies up to 4lbs, there's still plenty of room to grow into it!!

Two steps forward and one step back

Thomas has been a bit grizzly for a couple of days and his Heomoglobin count was a bit low so last night the doctors gave him a little blood transfusion. Of course what we are learning is that they manage to sort out one problem only to get another. This morning, Thomas' oxygen saturation levels were going up and down so it was decided that the blood tranfusion had given him too much fluid and with the valve being open between his heart and lungs, some of it was ending up in his lungs.

Grandparents need not worry too much as he was given something around lunchtime today that encourages him to fill his nappy lots and get rid of that excessive liquid and we can assure you he did just that!!

This morning we also had a chat with one of the consultants about Thomas' bleed on the brain that he had when he was two days old. It was a little scary and quite complicated to understand but will endeavour to explain...basically, the brain has two ventricals which help drain liquid from the brain into the spinal cord. When Thomas was born some of the blood vessels around the right ventrical ruptured and blood escaped into the ventrical and some of the brain tissue around it. At the moment, Thomas' brain has some swelling around this area and the brain tissue that was affected is no longer usable. The doctors are going to keep a close eye on him for the next few weeks to make sure that the blood doesn't clot and block the drainage system from the ventrical and also that the swelling doesn't increase. The consultant said that she hadn't seen this complication from a brain bleed for quite some time so we're keeping a positive attitude especially as Thomas doesn't seem to be showing any sign of discomfort and so far there has not been any affect on movement (as he doesn't stop) but we will keep you posted.

This evening Thomas seemed so much better and we managed to snap this picture of him attempting to suckle on a dummy which is all good practice for when he can suckle on the real things!!

Who's two weeks old today?

Yes you've guessed it - Thomas is. He is still doing well and is now spending four hours in ten off his C-PAP machine which is gradually building up his lung strength. The only problem is putting him back on it as he really doesn't like it and will do anything to pull it off again. He has already got himself a bit of a reputation in the unit for being the naughty one so it sounds like he's turning out to be a real character!!

Yesterday, the doctor told us that he has a slight heart murmur which is caused by the valve connecting the heart and lungs not closing properly. This is very common with premature babies and as it doesn't seem to be affecting Thomas, they're not going to do anything about it for now and hopefully it will close in time. If it doesn't close, there's a simple procedure that they can perform when he's six months old which will close it without too much trouble.

Thomas has some new friends in the incubators next to him including twins Tom and Jack born 14 weeks prematurely. Tom is doing well but Jack is very poorly however, he's really fighting so we're keeping our fingers crossed for parents Tilly and Martin.

In the blue corner, weighing in at 976g

Thomas was weighed today and now weighs a whopping 976g!! He was born weighing just 882g so has already shown a rapid increase in the last 12 days. The nurses have also suggested that in the next few days, he might be moved to the next room. Moving to the next room seems like a huge step in the right direction although the next room is still high dependency but at least he'd be out of intensive care - we'd better not get too carried away as he hasn't been moved yet.

Aunty Sandie visited Thomas today and brought him some lovely clothes to wear - of course very fashionable clothes too!! We left him very peacefully breathing off his C-PAP and luckily didn't have to see him get upset when the nurses put him back on it. He's now taken off C-PAP every eight hours for two hours and is doing brilliantly, here's a photo taken this morning. Also attached is another picture of Thomas cuddling mummy.

Visitors

Since our last post, Thomas' nurse was worried that he seemed to be running a slight temperature that evening. He also seemed quite grizzly so the doctors decided to put him on some antibiotics straight away rather than let anything develop.

By the next morning, his blood test did show that he seemed to be fighting some kind of infection however, his temperature had already dropped and he did seem much calmer than the night before.

We have both been quite worried by the infection since one of the other babies in the unit had to be transferred to another hospital for an operation because she had developed an infection in her lower intestine. We really hope that Florence is OK especially as very sadly we learnt that another baby died in the unit yesterday. When we compare Thomas' infection to these and some of the other babies that are in the unit, we have to say that we have so far been extremely lucky and every day he does seem to show steady progress and is already starting to breathe without his C-PAP for 3 hours every day.

Today, Thomas was visited by his Aunty Jackie and Uncle Jim (mum's cousins). He managed to open his eyes to see them and next time they visit, hopes to be proudly wearing his new special tiny clothes that they bought especially for him.

After Aunty Jackie and Uncle Jim left, dad got a lovely cuddle with Thomas and we left him peacefully sleeping. If you're wondering why dad is baring his hairy chest, skin-to-skin contact has shown to be extremely beneficial for premature babies.

Dirty nappies and sick

Today saw Thomas' first yucky nappy!! One of many to come but still a landmark in Thomas' short life. He is now being fed 7ml of milk every two hours through a tube directly into his tummy but being a bit grouchy this morning after having his nappy changed he decided to vomit up his milk. It was a scary few minutes for mum since he managed to pull out his feeding tube and lose half of his sticky pads that monitor his vital signs which set off all the alarms around his incubator. Happily after a few minutes he calmed down enough for Debbie (his nurse) to take of his C-PAP and let him breathe for himself. For those of you wondering what a C-PAP is it's a mask that sits over the nose and blows air gently into the lungs helping babies with their breathing until their lungs are strong enough to do it on their own.

Dad went back to work today but was able to say a quick hello when he dropped of mum at the hospital this morning. Mum spends all morning at the hospital and dad picks her up at around 12pm. Then both of them come back around 5pm for another couple of hours with Thomas. It's always very hard to leave Thomas in the evening but the doctors and nurses looking after him are absolutely amazing and so caring that we know he's in good hands.

The best day yet

Thomas was 1 week old today. He is still doing really well and was finally taken off his ventilator yesterday so is now breathing on his own. He has also been taken off antibiotics and morphine so is fully awake (when he's not sleeping!). All the doctors and nurses were so impressed with his progress that today, they let him out of his incubator for his first cuddle with mummy. Not be outdone though daddy got to change his nappy and feed him (through his feeding tube).

The first few days

3 March 2006
Good news!! Thomas has been steadily improving and was now stable. He was still heavily sedated on Morphine but both the haemoglobin and oxygen levels were improving so the doctors were pleased with his progress. Today was also Grandma Brenda's birthday. But she's been suffering from a bad cold and was too unwell to be able to see little Thomas. Mr D managed to take her out for a quick birthday lunch instead.

1 March 2006
I have been instructed in the art of expressing milk giving me something to keep me occupied every three hours for between 40-60 minutes!! Thomas has his own shelf in the fridge and freezer which is slowly being filled up with all the milk. All the Grandparents have already been into see Thomas, not even heavy snow showers could keep them away!!

During the afternoon, Mr D and I were given some bad news. Unfortunately, Thomas' haemoglobin and oxygen levels were getting very low and following a scan of the brain, a bleed on the brain was found. The bleed was on the right side of the brain which in future could affect the left side of the body though any permanent damage would not be known for some time to come. The critical thing was to increase his haemoglobin and oxygen levels so he was ventilated with oxygen and given a blood transfusion. Poor Thomas was also given Morphine to help settle him down as he wasn't dealing very well with all the attention the doctors were giving him.

He is also suffering from some bruising from the delivery and jaundice so he's under a blue light a lot of the time.

As you can imagine, both of us did not take this news very well. That night's sleep was not very good for either of us. I was in a private room on the maternity ward and, with only a photo of little Thomas for company, awoke the next day very tearful and suffering from a migraine.

28 February 2006
Thomas is very small as you can imagine, weighing only 1lb and 13 ozs. After he was born, he was immediately whisked off to the Neo-Natal Intensive Care Unit (NICU). Dad (Mr D) was able to visit him very soon and reported back to me. At the time, he was stable and initial signs were all good.

The arrival of Thomas Frank Llewellyn Donovan

Tuesday 28 February 2006
After struggling to sleep for some time, I finally managed to drift off only to be woken up at 3.20am with a pain in my tummy - oh no the contractions had started again!! I was quickly moved back to the labour ward and after examination it was decided that baby D was definitely on its way. Chris arrived at 6.30am (it took me several attempts to get them to call him, they obviously thought he needed to sleep!!). By 7.30am it was decided that baby D would benefit from an emergency c-section. Yikes large needles, knives and lots of BLOOD!! Thankfully not quite that bad although the interesting roller coaster feeling was quite unusual. At 8.21am, I looked at Chris and said, is that a baby crying? He turned to the nurse who said congratulations. We looked at each other before remembering to ask what it was? It's a boy came the reply. Thomas Frank Llewellyn Donovan had arrived!

Monday 27 February 2006
We arrived at St Peter's Hospital at 1.00am and spent the next 18 hours under hourly observations and thankfully the contractions stopped. By 7.00pm it was felt safe to move me to another room for the night in the maternity ward.

Sunday 26 February 2006
There we were just about to sit down for dinner with Dad, Katherine and my brother, Luke. I only stood up to pop to the loo - being pregnant you always need to make short trips before doing anything - when a puddle appeared on the kitchen floor!!

This can't be right I thought to myself. Dad looked at me and we both looked down at the floor. I then realised that this could be something a bit more serious. Within seconds, Chris was on the phone to Frimley Park Hospital and packing my bag.

We arrived at hospital at about 7.30pm and was soon in a delivery room receiving lots of attention as baby D was not due for another 12 weeks. The doctors and midwives were brilliant and really took control and decided that it would be better if they could delay baby D's arrival for at least 48 hours. This would enable them to pump some steroids into me which would help with the development of baby D's lungs giving him a better chance.

At this time they also told us that they did not have the facilities to deal with a baby should it be delivered this prematurely and were phoning around other hospitals to find a space for both of us.

After a few hours, my contractions had really slowed down and they found us a space at St Peter's Hospital which was really handy for us particularly as it had been known to send people as far as Oxford before now!! Laurel and Hardy ambulance drivers were on hand to transfer me, keeping my spirits up.