What Katy Did Next

Photos 2

2007-08-18T11:12:00.002Z

Photo Story

2007-08-18T10:53:00.000Z

1 Week old today

2007-08-18T10:07:00.000Z

Hello everyone. Kate is one week old today!

Sorry about the gap in the blog. As you are about to find out, we have been very busy! We left the story having been discharged from hospital. It was straight to our (small) flat in Kingston for a short time while we waited for our audiology appointment in St Mary's Hospital.

As I'm sure you can imagine, and as those of you with children know, the first nights at home with your baby are interesting ones. The first thing we noticed was how loud Katy was, grunts, squeaks and the less subtle screams for attention. I was able to sleep through some of these, but Leanne stayed up with Katy for most of the night. However, I was there in the mornig to take over and let Leanne get some well earned rest.

When we first moved to Surbiton in 2006, we walked along the Thames to Kingston and saw all the prams being pushed by proud parents. It was finally our turn, although we still should have had 3 weeks of walking with a big bump. We were fourtunate enough to have some cracking weather so we we able to have a stroll down the river on Wednesday, a stroll and a wander round outside the shops on Thursday and then we ventured into some shops and a resturaunt on Friday. On Saturday, we were joined by Auntie Sarah for a frosty beer and nibbles, in the sun, next to the Thames. Katy was due to be born in two weeks from that day and we could not quite belive that we were all sitting there and having fun in the sun.

That weekend was spent getting ready for the move back to Wales. Lots of sorting, packing, and thowing things out. Katy was very well behaved, and just watched us get everything sorted. We had a farewell dinner with Uncle James and Auntie Sarah on Monday evening then it was off to the hospital on Tuesday.

The hearing test was not great, reduced hearing in one ear and nothing in the other. Katy was still not supposed to be born so she will be tested again in a few weeks to see if she has got any better. On Wednesday, we loaded up the car, gave the keys back to our landlord and were on our merry way back to Wales.

Katy was fantastic on the journey, she slept pretty much all the way. We had a decent run and were both nervous and excited (there must be a word for that) as we got in the lift up to our new home.

What we found was jaw-dropping. All of our things that had been put in storage over the last two years were there waiting for us. Our ormanents, photos, clothes and our fantastic bed. It was a special feeling to finally be here, almost as if the past three months had melted away.

Katy responded to us being much more chilled out and she loves the sea air. We take her for walks in the "BabyBjorn" (THANK YOU LYDIA!!!) every day and she is developing every day. She is now over 5lb and has started lifting her head and doing little smiles. She has met many of her Welsh relations for the first time and spent lots of time with her Grandparents too.

Katy was supposed to be born last week. She decided that she would come into the world 16 weeks ago and she has shown us all how strong she is. Leanne has been, and still is, an amazing mother. All those hours spent with Katy in hospital have definately meant that we could be here today, and not still in Kingston going to see her in hospital.

Thank you ALL for your support through this tough time. This is not the end of the blog. We will be keeping the photos and comments comming every few weeks so stay tuned for more exciting Katy adventures, and if you are ever in West Wales, drop us a line.

Mark, Katy and Leanne Richards,

129 Altamar,
Kings Road,
Swansea,
SA1 8PP.

PS. Photos in a seperate post

Katy's Home part II

2007-07-28T12:33:00.001Z

On Sunday katy was weighed and was 4lb for the first time in her life. This meant that she could be discharged, it also meant that we were going to "Room in" with Katy on Monday instead of Tuesday.

We did not spend much time in hospital on Sunday because we had to go out and get lots of things done. We managed to get everything sorted and turned up at the hospital on Monday afternoon.

Within an hour, we had taken Katy out of the neonatal unit and into our private room. It did have an en-suite, but daddy had to sleep on a fold out bed. It was amazing to just lie on the bed with Katy and watch trashey TV. It was a fantastic day and then the time came for mummy and daddy to go to sleep.

We decided to feed Katy at 2am and 6am. There were two main issues that stopped us getting to sleep. When Katy was sleeping silently, we were scared she was not breathing and when Katy was not sleeping silently, she made a wide variety of strange noises. One of the nurses had came in to see us and did say that "she is a loud sleeper". She was spot on.

As dawn broke, we both thought "where did that come from?" and got ready to give Katy her morning feed. The reat of the day was simply a matter of waiting for a doctor to check Katy over and discharge her. This happened at about 2pm and then, after some "graduation" photos and tears from Leanne's lovely mummy friends, we finally got to take our baby home.

Part III coming later, I need to sort Katy out!

Katy's home.

2007-07-28T12:11:00.001Z

Katy came home on Tuesday 24th July!

She had been in hospital for 12 weeks and 1 day. That last day was spent with us in Transitional care. It was a amzing to be fully responsible for our daughter for the first time.

Katy

Monitor Monitoring

2007-07-18T11:04:00.000Z

Katy has been taken off her oxygen and pulse monitor.

We will have to watch her carefully from now on!

How low can you go?

2007-07-18T07:52:00.000Z

Katy is enjoying her new spot in low dependancy.

She has been feeding very well and we had fun giving her a bath yesterday. We are nervously waiting for weigh-day on Thursday so we can see how close she is to coming home.

Only 180g to go!

P.S. Here's some snaps so you can see her as we do!

Changing Rooms-No Handy Andy

2007-07-17T08:23:00.000Z

Katy has been moved into LOW DEPENDANCY.

We are off to see her new room. I'll take some photos too!

Super sunday

2007-07-15T21:53:00.001Z

Katy now weighs 3lb 10oz!

Sha has had a good weight gain, and been taking her feeds from the bottle so well that her feeding tube has been taken away. She still does not need any oxygen and has been able to keep her oxygen levels up on her own.

This all brings her a lot closer to coming home, but also more frustrating that we have to leave her in hospital. We could just unplug one lead and whisk her away!

Baby steps

2007-07-13T09:23:00.000Z

Katy did about 20 hours without any extra oxygen yesterday.

She has also put on 70g taking her over the 1.5 kilo mark she is 3lb7oz in old money. She had a great day off extra oxygen but the nurse on the night shift put her back on. Katy does dip and set off the alarms, but she bounces straight back every time. We were a little frustrated to say the least!

I had my lats ever teaching day in the Priory on wednesday. I was a bit overwhelmed by the respose of the students. Lots of cards, gifts and a few tears. We went for a fantastic meal with some of the staff on Wed night. I will really miss everyone at the Priory.

It is time for the next exciting part of the Mark and Leanne adventures (and Katy too!). We have achieved so much in the last 2 years, we have overcome massive hurdles, but we have stil had an amazing time and become better people.

The next step is exciting too. Moving to a new life on the beach, near to our wonderful families and getting to have Katy home with us. We dont know when we can take this step, but neither of us can wait and neither can Katy!!

Thanks to everyone at the Priory, it has been wonderful.

Rosy Cheeks

2007-07-11T11:54:00.001Z

Katy had a blood transfusion last night.

Leanne and I had thought she was pale since the weekend and she got a blood test on tuesday morning that showed her red blood cells were low. She then had some extra blood and she perked right up!

It is my last day in school today and I can't wait to be with my lovely, beautiful, girls.

On yer bike

2007-07-07T21:43:00.001Z

I am on my way back from the start of the "Tour de France", or as Leanne calls it "just a load of men on bikes".

My friend an I had a fun afternoon of sun, crowds, harrods sandwiches and now sunburn. I got to play with my wonderful daughter before I left. However, while I was away, mummy and auntie Sarah got to give Katy her first bath. Photos to follow.

Katy has been doing most of her feeds from a bottle and spent two hours today with no extra oxygen.

Nearly a big girl...

That's more like it!

2007-07-05T14:52:00.001Z

Katy is fantastic

She has been moved out of the incubator and into a cot. She now weighs 3lb 3oz too! All these things bring her closer to coming home!! A registrar did mention the first week of august as a possible home time. Although I thing there is a chance she may be out sooner. I hope so because I finish school on well wednesday.

However, there is still and infection risk, which is why I can't see her right now. I have a sore throat and its not worth the risk. She was immunised yesterday so there are a few infections that she won't be getting. She tolerated it very well. Katy still needs a small amount of extra oxygen.

Leanne is doing well, especially as we are putting together a list of bits that we need to go out and buy!

Weighty Katy 4.0

2007-07-02T12:18:00.000Z

What a great weekend!!!

Katy is now over 3lb. Weighing in at 1.38Kg. She has been put on nasal oxygen (see 4th pic) and has been taking a complete feed from a bottle (see 2nd pic). We have been visited by two aunties; Catherine and Lois and we were cooked a delicious meal by James and Sarah.

Katy is on 0.02litres of oxygen per minute which is only a tiny puff and 0.01 is the lowest she can go so she is nearly off extra oxygen. She is taking a lot of feeds from the bottle and a little from Leanne. Feeding and breathing without support are two massive steps towards coming home, so well done Katy.

Sorry that my blog updates have reduced in frequency, but I promise that you will be the first to know any important news.

Don't worry, be happy

2007-06-28T16:24:00.001Z

Katy just did a burp and a bit of sick and her oxygen is now back to normal.

Kids eh?

Not so weighty Katy

2007-06-28T16:15:00.000Z

Katy has only put on 40g.

She is now around 2lb 13oz. It is tough for us because we had thought she was doing really well. To add insult to injury, her oxygen has been put up by 5%. These two things are not big problems, but it is frustrating. I suppose we should not will her out of hospital sooner than she is ready. However, the more she looks like a proper baby, the more we want to just take her away.

Seeing all the other proud dads zoom past when we are on the way in doesn't help either.

2lb 12oz

2007-06-25T13:54:00.000Z

Katy has had an exciting weekend.

She is still out of intensive care. She has put on 80 g and is now 1240g which is 2lb 12oz. She has been moved onto one feed every 3 hrs and is tolerating the larger volume well. Her incubator oxygen has been as low as 22% which meant that she was almost breathing air! She has finished the antibiotics and seems a lot better.

We had a great weekend, hope you did too!!

Holiday or emmigration?

2007-06-22T08:32:00.000Z

Katy was moved out of intensive care last night.

She was the most stable baby and they needed the cot space. Katy only put on 20g so she is now 2lb9oz, at least it is a gain. Her bottom is still quite poorly, she has nasty blisters, but the more general rash has got better because we are using terry toweling nappies. However, Katy cannot use the full size ones, so we are using flannels instead! (another good idea from Nanno)

She may move back to intensive care, because she is still one of the smallest around, and she is still in an incubator, but it will be fun for Katy to look around her new room.

Oh well, got to do some reports, time to copy and paste...

Whoops, I've got a puncture

2007-06-20T19:47:00.000Z

Katy had to have a lumbar puncture yesterday.

It was all clear, and she had three doctors doing it, so it went in first time. Her infection markers have come back down a bit now, but Katy is still having nappy rash. Katy had blood transfusion today so she is looking nice and pink.

The camera batteries have run out, so no photos today. Maybe Friday, sorry photo fans!!

P.S. Our address is:
10 Rivermead,
Uxbridge Road,
Kingston Upon Thames,
Surrey.
KT1 2LR

Weighty Katy part II

2007-06-18T11:50:00.001Z

Katy is now 1140g which is 2lb8.5oz.

She is still off CPAP and coping well with her oxygen around 25%. We had a bit of a scare when she tried 2 hourly feeds and required extra oxygen. They took some blood and decided they wanted to do a lumbar puncture (a needle into the spine to get fluid) aswell. We were not happy with this so we went to the hospital to meet with the registar and they delayed it for 12 hrs. Katy was fine that night and the next day they cancelled the lumbar puncture. Hooray!

She is doing well today (feeling better than daddy and uncle chris who went to a concert last night!). Rock and roll!!

Who needs cpap

2007-06-16T23:09:00.001Z

Katy has now been off for over 50 hours.

We were a bit concered today because she needed more oxygen, but this happened at the same time as her feeds changing to two hourly and twice the volume.

She is having some antibiotis, again, because her blood test was not brilliant. This may have been caused by the rash on her bum, so we shall see how she gets on overnight.

More photos on monday. Sorry.

Happy CPAPY

2007-06-15T12:53:00.001Z

Katy came off CPAP at 9pm last night and she still has not gone back on!

Good set of lungs!

Weighty Katy

2007-06-14T21:04:00.001Z

Katy was 1100g today. That's 2lb 7oz.

She is looking absolutely fantastic today. She has done over 7 hours off CPAP and we are very impressed. We have been putting Katy to Leanne's breast and she has been latching on, which is an amazing feeling.

John and Marlene (leanne's nan and gramps) visited yesterday and Nanno (leannes mum) is still here and making sure Katy is behaving herself.

I held Katy in my hands, outside the incubator today. Amazing.

Eye eye

2007-06-12T20:03:00.000Z

Katy had her first eye test today and it was fine.

She is feeling bigger and has become quite particular. If things are not quite right, she makes you aware. A bit like mum and dad really!

She is still doing 3hrs on CPAP, 3 hrs off. Although she now needs less oxygen. She breathes air when she is on the CPAP and has about 25% when she is in the incubator. We have been able to cuddle her for the last two evenings and it is a real treat.

She is doing really well!

Back to Skool

2007-06-11T09:21:00.000Z

Just taught my first lesson. It went very well.

Everyone is glad to see me back, staff and students, but it was hard to leave Katy this morning. She was looking really good though and we know that our favourite nurse is looking after her today so that makes it easier.

Katy was weighed yesterday and she has broken the kilo. She was 1040g which is 2lb5oz. She is still performing well and it is truly amazing when she opens her eyes, she is really responsive.

I need to get my planning sorted so I'll sign off.

Steak

2007-06-09T13:19:00.001Z

We managed to have a BBQ yesterday. It was splendid. The woman from upstairs came down to complain about it today. She said she had to "clean the grease off her tiles" I said " we only had steak and two burgers" she showed me the minutes from the last residents AGM saying no BBQ anywhere in the complex. I pointed out that there were only 3 people at the AGM out of 24 flats and apologised for the smoke while pointing out that she was making a bit too much fuss. She seemed to listen. Her current issue is with a guy on the ground floor who did not want to pay £50 to get his front door painted the same colour as the others (horrible green). She lives on the third floor. Good luck to the next tennants, we are leaving this summer!

Anyway, more importantly, Katy is doing very well. She is cycling 3hrs on, 3 hrs off CPAP and all the team are very impressed with her progress. We managed to find a few cute outfits in a Mothercare world so expect some nice pics soon!

Off to see Katy now.

First cuddles for a while

2007-06-08T09:34:00.000Z

Katy has started cycling off CPAP.

We had a good day yesterday, with a fantastic nurse. Katy was really awake at times and Leanne got to have a nice cuddle for over an hour. The antibiotics have finished and the nurse was able to take the line out of her arm.

She has seemed much more comfortable and is doing well when coming off the CPAP. I have added another 3 photos to my web album because it is much easier than puting them on here (plus, google adds tham to an album when I put them on here anyway). If you want the photos back on the blog then leave a comment.

Can't wait to see Katy today.

Web album

2007-06-07T13:43:00.000Z

Go HERE for the photo highlights. The quality is not brilliant (come on google, sort it out) but there are some lovely snaps on there. The SLIDESHOW is very good (see the small sneak preview below!!!).

link is:

http://picasaweb.google.com/welsh.mark54

No BBQ but a new breast pump.

2007-06-06T22:20:00.001Z

Katy has been very stable today.

No time off CPAP, but we spoke to a doc this morning and they want Katy to "recruit alvioli". What this means is, when she is having CPAP pressure, more and more air sacs are being inflated in her lungs. When she comes off CPAP, some of the air sacs collapse. One of my favorite science demos is inflating sheep's lungs and this provides a good, albeit gory, analogy. I have to blow about 10 times to get the lungs fully inflated then when I stop blowing, they collapse.

We stayed later today, only just got home in time for the apprentice, so there was no time for a BBQ. However, we did get given a funky, silent, breast pump by the hospital. No buzzing, just the sound of milk spray on plastic. Bliss.

Wil try to put some photos up tomorrow, plus a web album of the snaps I just sent off to be printed.

Mothercare

2007-06-05T22:58:00.001Z

We went to buy Katie a (very) little vest today.

Mothercare in kingston only do an "early baby" size that goes up to 5lb. These would be far too big for Katy. It was quite scary to browse through the "new born" section. If you see a "new born" outfit, Katy would be about half that length and width. It is quite astonishing.

We did have some success in John Lewis though, we bought a mini "weber" BBQ that we can use on our balcony, as long as the mad old bat upstairs doesn't tip water on it, and take to the beach when we live in swansea. We should be having our inaugral BBQ, for two, tomorrow night, we'll save Katie a burger!

Katy did seem better today. She has been breathing air through her CPAP for ages now and the hourly feeds are going down without much bother. We just spoke to the night nurse who seemed quite surprised that Katy was having dips with her food, even though this has been happening for two weeks! We will be complaining to matron in the morning. We want the best possible care for Katy, the sonner they realise that, the better for them.

Katy did an hour off CPAP, and had a good blood gas afterwards, but the nurse just told us that the time off was just to give her nose a rest. This means that there is no plan to cycle off CPAP, but at least we got to see her pretty face. I'll try to put some snaps on in the morning.

Night Night.

I don't like mondays.

2007-06-04T16:19:00.001Z

We had a looooong chat with the consultant today.

This is the first time we have done this in kingston so there was a lot to cover. They are happy with Katy's progress. Her brain is looking good, the blood has gone from one side. Her lungs are a bit inflamed, but this is common in small babies. The doc listened to Katy's heart and could not hear any murmors, so that's good. Katy is still having dips in heartrate and oxygen which are a concern.

This morning, she had a particulary low dip and this meant that they stopped her food and put her on CPAP all day. They also did a xray of her tummy, which came back with no problems. She has had less dips today, so they want to try her on hourly feeds with a small volume, something we wanted to do last week, hopefully this will help her to tolerate her food.

We have been having a tough time in kingston because we have not been able to speak to the consultants because they are not around. In st georges, we saw a consultant once or twice per day. We are also having slight difficulties with some of the nursing staff here, but e have made our concerns known and that should get better.

Katy has not been herself today, neither would I if I did not get fed. Hopefully, she will pick back up when they start her food again. We want the staff to do everything they can to help Katy and sometimes they drop below the high standards that st georges had set. I suppose we have to get used to it.

Finally, a big THANK YOU! To Trevor Jones, Deputy Head of Cyfarthfa High School, who sorted out a problem for me, super-fast, taking a big load off my mind.

Happy 5 week birthday Katy.

Day 34 in the big brother hospital.

2007-06-03T23:49:00.001Z

Katy has been a little quiet over the last two days.

She did have an infection in her leg. She has nearly finished a course of antibiotics and it has cleared up nicely. Her other leg is a little swollen so the medics are keeping an eye on it.

The good news is that Katy is 960g today which is 2lb 2oz. It was nice to break the 2lb barrier for the first time. Katy is now having 16ml of milk every 2hrs. The feeds are causing her some reflux and this makes her drop her heartrate and then her oxygen drops too. Again, the docs are keeping an eye on it.

We are getting a little weary now, Katy gave us a little glimpse of her wonderful self just before she got the infection, you saw the video, it makes it tough when she has a little dip. We must try, however, to put it in context. Katy has come though much tougher times and is doing well.

Grow Katy, Grow.

Video evidence

2007-05-30T22:53:00.000Z

Click HERE to see our video of Katy's first fully clothed cuddle. It is on google video, if you can't use it, leave a comment and I'l try and post it on another site too.

Another good day

2007-05-30T22:12:00.000Z

Leanne got to see Katy in the same mood that I saw her in yesterday.

We dressed her up and gave her a cuddle for over an hour. She has a little lump on her leg from where she had a line in to travel to Kingston. It seems a little infected and Katy is having oral antibiotics to try and sort it out.

Katy is getting weighed tomorrow. Try to guess her weight, in grams, the closest will get a prize.

Mark Vs Matron

2007-05-29T20:09:00.001Z

Katy has been better than ever today.

She is now doing 4 hours off CPAP, 2 hours on. She is more comfortable off it, so hopefully they will keep increasing her time off.

We registered her birth this morning, bit strange not to have an official document that's not bilingual!

Grandad and Nanno have been down for the last couple of days with uncle Daniel. It has been fantastic to see them, apart from when Dan beat Me at darts (a pure fluke, bullseye on the last shot).

The matron had said that Dan could not come onto the unit, but I managed to change her mind with some careful persuasion...

When I went in to see Katy and have a cuddle, she was awake and kicking around like a proper baby, she was looking at me and responding to my voice. It may have been my red hawiian shirt, but the nurse said Katy was grinning when she arrived on my chest.

I went out of the hospital I was walking five feet in the air.

Blog fun

2007-05-28T23:35:00.000Z

We have made a few small changes to the blog page, hope you like them!

Naughty Katy Getting Her Nappy Changed.

2007-05-28T23:09:00.000Z

As you can see above, Katy was pretty lively today,

She has been doing 3 hrs on CPAP, 3 hrs off CPAP. She seems to prefer it off CPAP and they may extend her to 2hrs on 4 hrs off soon. When she is off CPAP, she is lolling around in around 30% oxygen. As you can see from the photos, the blood transfusion has given her a much redder colour.

She is really developing her own little personality, hope it continues!

This post was sponsored by the "Red Rose of Surbiton", a fantastic curry house once visited by Robbie Williams, apparently...

Lovely cuddles

2007-05-27T19:43:00.000Z

Katy pulled her feeding tube out and then pulled the plaster off her chin!

This dummy is, in fact, the word's smalest.

Leanne got to cuddle Katy today, without th CPAP on.

We had a great day today.

Katy was weighed at 840g (1lb14oz). An 80g increse since being in Kingston!
She is spending 2 hrs out of six off her CPAP
She spent an extra 45 minutes off (2hrs45 in total) so she could cuddle with Leanne.

Katy is now back to herself after 2 days of settling into her new hospital.

Kingston Katy

2007-05-26T17:35:00.001Z

We had a bit of day yesterday.

I rang the hospital at ten to one to find out how Katy was doing. The nurse filled me in with the usual; she's fine, on low oxygen etc. I told her that was great and we would be in soon. I heard someone in the background say something and the nurse said "oh, just to let you know, Katy is being moved to Kingston" I asked when this would be, and she told us half past one. I said "that's great news" not quite realising that it was going to happen in 30 mins and no-one had told us.

I told Leanne and she instantly realised how serious this was, rang the hospital and talked to the consultant to double check. It was really happening, so we hot-footed it over to St Georges.

Katy was still there because the ambulance was late so we were relieved to see her. This feeling didn't last long. Due to the late ambulance, a different registrar was going to travel with Katy. He came in to see her and said "she needs a canula" this means a line being put in her arm for quick administration of drugs. Then a third registrar rushed in to do the canula and could not get one in. It is really hard when your veins are as small as Katy's.

After 3 attempts and all the other panic we had been through, leanne and I told the doctors that they should stop hurting our daughter and not do the transfer. We were ushered into the "quiet room" where, after a couple of mins, the lead consultant came to see us.

She started by apologising for the short notice about the transfer and we told her that we had had no notice. WE had rung the hospital,not the other way around. She was not pleased and told us there would be a review of what happened. We then discussed the transfer and agreed that the registrar could try two more times to get a line in and the we would abort the transfer if he couldn't.

The doctors walked out and left us on our own. Within a minute, they came back in to tell us that the other registrar had got a line in and Katy could be transferred. What a mess!

Katy arrived in Kingston yesterday at about half past four. She was pretty pooped after the journey but the staff in Kingston managed to settle her in. We have been with her for most of today and she has picked up. They also gave her a blood transfusion because her levels wer a bit low.

We are frustrated that the transfer has been a bit of a setback but Katy is settled now and not only is Kingston hospital only 5 mins from where we live, it is much more peaceful. So by the end of the week we should be a bit more happy about things.

What a kefuffle!

Hats off to Katy!

2007-05-24T09:57:00.001Z

Isn't she lovely!!

"Wednesday-whatday?"

2007-05-23T22:15:00.001Z

Katy managed 2.5 hrs off CPAP today.

She also got back to her birth weight by putting on 15g. She was quite tired when she finished her mask free stint but they might not try her for so long tonight.

Sorry about the short posts these last few days. I have been using my limited brainpower to mark a-level coursework.

Camers batteries charging so no photos. Sorry!

Two hours with no trunk

2007-05-22T22:57:00.001Z

Katy did two hours off CPAP today.

We watched her pretty face and head for the whole time and it was just like a dream. She put on 15g yesterday, which bumbed her up to 705g total. Hopefully she will be back to her birth weight tomorrow.

The Doctors are very happy with her and so are we.

Photo Phantastic

2007-05-21T21:13:00.000Z

The website seems to have reduced the quality of these. Never mind!

Monday Funday

2007-05-21T18:31:00.001Z

We regretted hanging around this morning.

At about 1130 Katy spent a whole hour frolicing around her incubator with no CPAP mask on. She was in 25% oxygen and did extremely well. Her blood gasses were very good afterwards too. Just before midnight she will be trying the same thing for two hours.

We we annoyed that we missed it today, but we will be there, waiting like the papparatzi, nice and early tomorrow. Katy had some special visitors this weekend and she was very excited to see them all. She got an especially cool baby grow too. Shame she won't be able to wear it for a while, but when she saw it, she said she couldn't wait to try it on!!

I'll pop some more snaps on the blog after tea.

28 weeks later

2007-05-19T15:09:00.000Z

If Katy was where she should be, in Leanne's womb, she would be 28 weeks old.

She decided not to hang around there and coe and meet us all a bit early. She is doing ok today. I went to see her this morning and Leanne is there now.

She was a little restless this morning, maybe she wanted to watch the FA cup. Lucky she didn't, judging be the first half. She is still as beautiful as ever.

I had a strange, but wonderful experience this morning. Katy sleeps with her arms up over her ears, and so does Leanne. So when I bought Leanne her morning coffe and she woke up and opened her eyes, it was just like a super-size version of my (very) little baby.

Katy did look a lot like me when she was first born, but she is really starting to look like her mum now.

That's lucky.

Kangaroo Care

2007-05-18T09:05:00.000Z

More cuddles yesterday, and on Wednesday.

Kangaroo care is when you put the baby next to your chest and tuck them into your shirt. This calms them down, regulates breathing and is an amazing experience for mum and dad.

No real news over the last few days. Katy is doing very well on CPAP, but is not putting on a great deal of weight yet. She has tolerated a couple of 10-20 minute sessions with no CPAP and they will hope to wean her off it over the next few days.

We were told about the possibility of moving Katy back to Kingston hospital, possibly as early as next week. This would be fantastic as it would reduce our trip down to about 5 minutes.

Thanks for all your comments, cards and support. You are wonderful people.

More cuddles

2007-05-16T19:43:00.001Z

We both got extra cuddles today.

We spent all afternoon with Katy in our arms, then we got to change her and feed her. Fantastic.

Katy loves her new blanket, a Dacey original, and her other new blanket, from uncle Dan, is keeping all the harsh lights and sounds out of her incubator.

We had lovely visits from Greg and Charlene, Dean and Dawn (Gramps and Nan) and Auntie Catherine. Is really helps the hospital experience when you have others to share it with.

Katy had another brain scan today and it was fine. She is having more scrummy Leanne milk and her blood gasses have been "excellent".

Grow Baby, grow

The photos say it all

2007-05-15T21:11:00.000Z

The best moment of our lives.

Beauty is in the eye of the babyholder

2007-05-15T15:08:00.001Z

We both got to hold Katy today!!

As soon as we arrived, the new nurse, Dawn, said that we would be able to hold Katy. We got really excited while Dawn was on her break. Dawn came back and we both got to hold the baby.

More info and pics later...

Curly-locks

2007-05-14T21:08:00.000Z

Before and after. Think Katy is smiling in the bottom one!
Katy has Curly hair!!

Katy has been doing really well on the CPAP. Her blood gasses are excellent and she looked comfortable, apart from her bottom, which was a little sore.

We had one of the best experiences so far today; we stayed a bit later today because Katy was not settled and we watched her being weighed. This involved her being stripped of all her wires, the CPAP, her nappy, and her hat. She was only being given a whiff of oxygen.

We could see how small she is when she was outside the incubator, but she was squirming and looking around like a proper baby, just in minature!! We also saw her dark, but curly hair!!!

What a treat.

P.S. A big thank you to Nanno and Grandma, who have been helping us keep things ticking over. It will be hard to adjust, but I'm sure we will give it a good go.

Great Extubtions Episode II, Attack of the CPAP

2007-05-14T15:05:00.001Z

Katy has had a successful extubation.

She was super relaxed today and had been on the absolute minimal ventilation all weekend, plus her duct has almost certainly closed, so the docs decided to get that tube out today.

We were told that they would start at 1400, but they actually started closer to 1500 and finished at about 1530. She was very exited when we went back in to see her and Leanne put her hands on Katy to do some "containment holding". This has really calmed her down.

Hopefully she will continue on CPAP and not have to be re-intubated this time, but there is still a chance she may not cope. She seems loads better than last time though, so fingers crossed!

We have had some wonderful cards recently, and thank you all so much for those. We had a card today saying "Dear Katy, Welcome to the word" and without the tube in, Katy can really get a taste of this crazy place!

Fussy Katy

2007-05-13T19:05:00.000Z

We have had a nice day today.

We were both quite tired, but we anted to see our little girl, and a few beautiful winks perked us both up. Katy was like a proper baby today, although a third of the size! She had a few sleeps, a few wriggles and some tantrums when her nappy needed changing!!

The medics think that her duct has closed already, but will still finish her treatment. Her blood pressure has gone up and she is on the absolute minimal ventilation, but her oxygen levels have remained high, even though she is breathing air.

The next step is taking the tube out (again) and putting her back on CPAP, they will probably do this tomorrow. Hopefully Katy will do a lot better this time round.

We'll let you know...

Welsh invasion

2007-05-12T11:48:00.001Z

The clans have arrived in tooting.

Katy is doing well today, he has been put in a new incubator and she is lying on her front. She has tolerated the drug really well and will be having another dose later today. She looks really comfortable and that makes us feel much better.

Once, twice, three times a baby

2007-05-11T18:54:00.000Z

Better photos today.

Katy was very kicky and twitchy today. I found it quite hard, because she seemed to be in discomfort. I wanted to absorb all her pain and discomfort myself. I'm sure all the dads will have felt like that at some point too.

She tolerated the drug well and has also had the "long line" taken out of her arm. This was being used to feed her, but she now only needs Leannes milk. Brilliant.

The contrast between today and Tuesday is amazing. She has gone from completely still and relying on the ventilator, to moving, kicking and twitching. We have found it hard to deal with both of these conditions, but I suppose we had just try and get used to it.

Little hands

2007-05-11T12:43:00.001Z

Katy was holding my lille finger.

If you get your index finger and wrap it over your little finger nail, that is the size of her whole hand. It was nice to feel her grip though.

She is still nice and lively, with a cute little blanket on her legs (photos later). They are going to give her a small blood transfusion because she is running a bit low, small babies have trouble making new blood cells, they have stopped the antibiotics and will be starting indomethocone (sorry about spelling) shortly to treat her duct.

The full dose needed to treat the duct is 0.6ml (I think) and they are going to start her with 0.2 ml and then 0.1ml per day. They will check her levels every day before they decide to add another dose. By the time she has had the full 0.6 ml the duct will hopefully have been closed.

If Katy's duct does not close then she may need surgery. However, only 2 babies on our unit had to have surgery to close the duct in the whole of 2006.

Katy is looking forward to seeing her Great Grandparents; John and Marlene.

Alive and kicking

2007-05-10T20:24:00.000Z

Katy has come back to life,

She has been looking around (sorry about the dark pictures, we don't want to use a flash) and kicking. We did not spend too much time with her today because she seemed so stable, we just want her to prepare for her medicine to close the duct.

We both feel so special when we touch Katy, it makes us feel that she is really ours. We will be going in to see her earlier tomorrow, so I'll post again then.

Get that duct closed.

The incredible hulk

2007-05-10T14:39:00.001Z

Katy had a hole in her hat today.

We thought she might have incredible hulkitus where small babies turn green and rip their clothes, but, apparently, she had just had a brain scan last night.

The scan showed that there had been no extension of the bleed and some of the clot had gone away too. Brilliant! She has been taken off the drugs that were keeping her blood pressure up, because she can do that on her own, thank you very much.

She is going to be kept on antibiotics for another 24 hours. Her cultures have not shown any signs of infection and her infection levels have dropped too.

She is very lively today and I just had the pleasure of doing some "containment holding" that helped her get back to sleep. I hope I can retain this particular skill!!

She seems alive today. A fantastic feeling!!

P.S. Leanne had a very nice haircut this morning. It will take a lot of requests to perswade her to put a photo on to show you all...

P.P.S. Took some nice photos today.I'll post them tonight.

Happy birthday Great Grandpa!

2007-05-09T19:34:00.001Z

Katy was much more lively today.

When we left, the medics were trying to put two new lines in, she was not co-operating. It is amazing to think that they can fit a plastic tube into her tiny blood vessels.

No other new news from earlier. We managed to get home earlier tonight and have enjoyed a scrummy lasagne cooked by Grandma Alison. We are both much happier,yesterday was tough.

We are in it for the long haul...

Same old same old.

2007-05-09T15:54:00.001Z

Spoke to the consultant.

They are not worried about her IVH (brain bleed) apparently it is a "grade 2" and should not cause any problems. They are doing another scan just to check everything is okay, but there have been no clinical indications of any problems.

They want to start treatment for the heart duct,but have to wait untill at least tomorrow morning to find out if there is any infection. If there is no more evidence of infection then they will start treatment.

The team are happy with her and reiterated to us the fact that this is a LONG haul. Months not weeks. She is making progress, but everything should be done slowly. This is because, alongside each treatment she has to grow and mature aswell.

She has just had the new line put in and uncle Chris and aunty Helen have popped down from York to see her. She has also been given a blood transfusion because she was running a little low.

Bet Katy thought that Daddy was the biggest Richards, time to take uncle chris in and prove her wrong!

Sunbed tan.

2007-05-09T12:54:00.001Z

Katy is a bit more like herself today.

She has been wiggling a bit but we have not seen her eyes because she has been back under the photopherapy. She does look a bit pale,but she did just have blood taken.

We will be having a chat with the doc at 1530, hopefully, to get us up to date. But we did get a quick update; she does have a large duct near her heart and it needs to be treated. They have not started treatment yet because she might have an infection and this would reduce the perfomance of the drugs that can close the duct. If there is an infection, they will delay the treatment of the duct for a few days.

They will be taking the line out of her umbilical cord and they need to put a new one in her arm (ouch). They will also be doing a brain scan soon to check up on her bleed.

Should be some more info in the next post.

Pretty in pink

2007-05-08T20:55:00.000Z

A very quiet day today.

Katy was absolutely shattered today after her time on the CPAP last night. The doc thinks this was compounded by the PDA causing her blood pressure to drop and making things harder for her.

We have been upset that Katy was so still today, especially after the previous few days of dancing around. She has given a few blinks, but mostly she has had her eyes shut.

The staff are used to this of course and have told us not to worry. They said that they would tell us if they had big concerns, but they are happy with her. They did give her a couple of drugs to help boost her blood pressure. They should still scan her heart today, but no plans on the treatment until tomorrow.

This is a long process.

Happy birthday Granny!

2007-05-08T15:21:00.001Z

Granny is 89 today,

I'm sure that any of you who have met this amazing person will wish her a very happy birthday along with Leanne, Katy and I.

Katy is still really tired and has been sleeping for most of the day. She has given us a few precious glimplses of her wonderful peepers to let us know that she is hanging on in there.

No heart scan today,the cardiologist is unwell. It's okay though, the Ram is going to do one tonight. He is doing a research project and is a legend at doing the heart scans.

Can't wait to put the new pics on tonight, looking forward to reading your comments.

A rude awakening

2007-05-08T13:07:00.001Z

Doc rang at 0730.

They had to put a tube back in Katy, but she managed a whole 16 hours on the CPAP. We are very proud of her because breathing is very hard when you are only little.

She had a lung x-ray and it wasn't that great. Could be any of three things;
1. Her air sacs collapsed last night and she needs the tube to help her get them open
2. Her PDA is pushing too much blood to her lungs. She is having another heart scan this afternoon to find out about that.
3. She has an infection. They have put her on antibiotics just in case this is the problem,her blood results will not be back for two days.

None of these are ringing too many alarm bells and best of all, Katy looks comfortable. She seems tired, but she did puff herself out last night.

Katy has a new hat on. Photos later...

Shepherds' Pie

2007-05-07T19:19:00.000Z

Granny came to visit today.

It was nice to have a wonderful lady, who is about to be 89, spending time with another one who is only a week old! We don't think that we could have given Granny a better birthday present, albeit, a little early-in more ways than one!!

We just spoke to Katy's nurse and she has been doing really well on her new ventilator (a shiny CPAP). It is attached to her nose and is obviously much less intrusive than the tube. She had a few wobbles this afternoon, but managed to pick herself back up each time.

The chances are that she will go back onto the other vent, with intubation, but the longer she stays off it, the stronger she will get. She should be getting a cute little dummy too to help with her pressures.

We just want to say thanks for all your lovely comments. It is a real treat to get in after a tough day and read them all, a real pick-me-up. We are especially impressed by all of the PICU staff at GOSH, it really means a lot. Spread the word and lets get more messages!

P.S. you don't have to log in to leave a message, just click "anonymous" and then leave your name(s) at the bottom of the message.

A quickie

2007-05-07T16:11:00.001Z

Just saw the consultant.

Katy had a really good blood gas after her extubation. Seems like she has good strong, welsh, windbags. Wonder if she gets them from Daddy, Grandpa or Granny?

They can all talk the hind leg off a donkey.

Great extubations

2007-05-07T15:55:00.001Z

The tube is out.

After a really stressful hour and a half for leanne and I they finally pulled their fingers out and got the tube out aswell. Apparently the tube was very "gunky", indicating that is had been causing problems and would have to have been changed whatever happened.

Katy seems to be okay breathing on her own. A small number of dips in this, peaks in that. If she can manage it, then brilliant, if she needs to be re-intubated, so be it.

She has been put back on her front and she looks really relaxed, so are her parents, for now.

One week old, time to fight.

2007-05-07T12:37:00.001Z

Katy is being extubated now.

They should be finishing soon and we will be going back in to see her. If she can't cope, probably because of her heart duct (PDA), they will have to re-intubate. This might happen immediately, in a few hours, or tomorrow, or hopefully never.

Be strong Katy

(no) Great Extubations

2007-05-06T21:51:00.001Z

We wanted the tube out today.

We waited all day, lots of nervous energy building up because of what we were told in the morning. Katy has been stable all day. Still comfortable, but dropping her oxygen down quite often.

Between monday and friday Katy had about 10 "bradycardia" where her oxygen dropped. On Sat and Sun, she had over 30. Leanne and I think that this is being caused by the tube. It can get blocked, cause irritation and move around.

We were present for the doctors change-over at about 2030. They said that the drops were being caused by the tube, and they might extubate tonight, def tomorrow.

Katy is fine, and the tube is not causing too much damage because the pressures are so low. We just want it out so she can be more comfortable.

Lets hope that, when it's out, it stays out.

Easy like sunday morning

2007-05-06T12:40:00.001Z

Katy still looks chilled.

We had a very good sleep last night and we both feel a lot better. We got to the hospital just after 12 and Katy was just like she was yesterday.

She is on her back,doing some small movements, a few little yawns and she has given us a several glimpses of her beautiful eyes. We got to talk to the Doc straight away and there was lots of info (and a little bit of waffle too).

Her heart scan showed that her duct was quite big. This is not a massive issue, but may need treatment if she can't cope with breathing on her own. It may also get better on its own.

They will have just given Katy some caffine to get her ready for extubation later today,or tonight. They seem to think that it is likely that she will not tolerate being without the tube, but they need to test her out really.

I think her breathing is more regular today,and she is definitely breathing more calmly. There is still the spectare of her brain bleed to worry about and this has to be taken into account when making choices.

Her mass has increased, but that will put pressure on her heart,so the have decreased her fluids. It's a bit like a see-saw, the adjustments are so small and they have such a big effect.

Hope you can all have a relaxing afternoon. I suggest a nice walk.

Katy's first words

2007-05-05T20:40:00.000Z

I gave my parents a fright today.

The nice doctor took the two lines out of my left foot, they were really bugging me. I had been waving my legs around all week trying to make them realise how I felt, but they finally got the message and sorted it out.

I do not have to move aroung as much now, I much prefer lying in the foetal position, it's where I should be right now anyway! They gave me some more of that light this morning so I got to put on my shades again.

There was lots of comotion this afternoon, but it didn't really bother me. Those big lumps should learn to relax. I have spent 26 weeks learning about the world and I've heard worse, especially daddy's jokes.

A nice man came in this evening, I think he was on his day off, and he gave me a heart scan. He said he was going to pass the results to the consultant (whoever that is) to see how my PDA (whatever that is) is healing.

I was a bit worried about mum and dad today, they were really stressed, so I opened my eyes for a look around and I saw daddy looking right at me. He looked as if I was the most woderful thing he had ever seen. I can't imagine why!

Oh well, they do say the best things come in small packages.

Night night everyone.

It's tough

2007-05-05T15:30:00.001Z

We just had a bit of a bad moment.

We got back from lunch and Katy had just had a dip in heartrate and oxygen. She was being treated for it (extra oxygen) and this has happened before (its quite common). So that wasn't very nice.

At the sam time, one of the senio nurses must have had a cob on because she was slamming bins,talking loudly and disturbing us a lot. I think we will complain.

On top of those two things, the nursery was about to get another admission, by c-section. If you imagine ER with the docs+nurses running everywhere then you are about right. Leanne sent me out then,we were both really upset, because she knew what it would be like when the new baby was being stabilised.

It was our first experience of the unit being on alert and it was not very nice. I have just spoke to Leanne and unfortunately the baby who was due to come down died, and katy was fine through it all. Katy was frowning and Leanne gave her a calming hand on the tummy and she stopped frowning.

Leanne is expressing milk now and I'm outside in the sun with my folks. The madness is over now and i'm sure we will go through it again in the next few weeks and months, hopefully we will be better prepared for it next time.

It did not apper to effect Katy.

Size 00

2007-05-05T13:00:00.001Z

Just spoke to the consultant.

No heart scan today because he doesn't want to give her the drugs to fix the PDA untll he is happy with her brain.

She is now down to 565g from an original 720g. This is not a major issue, all babies lose weight, but she is a little more than average. This is probably because they have kept her fluid low.

Still might extubate today though,her blood gasses seem good. Lets wait and see.

No saturday kitchen for us today

2007-05-05T12:49:00.001Z

Katy has changed a little today.

She has had the two lines taken out of her foot so she curled up into a ball instead of kicking her legs out like she did yesterday. We can't decide if this is better, or worse.

She had a handful of drops in heart rate last night, and a little acid in her blood,so the extubation (breathing tube out) might not happen today. She should have the scan of her heart though to see if she does have a PDA and how big it is.

The docs would give her some drugs for either 3 or 5 days to try and close the PDA. However, these drugs would not be great for her brain. We are confident the docs will make the right call.

Grandma (Alison) and Grandpa (Dr Nick) have arrived and said hello to Katy. She has beens trying to open her eyes a bit more,but the phototherapy lights are back on so she is wearing her trendy eyeshades again.

Nearly time for lunch. I'm gonna stuff my face (whats new).

No saturday kitchen for us today

2007-05-05T11:44:00.001Z

Katy has changed a little today.

She has had the two lines taken out of her foot so she curled up into a ball instead of kicking her legs out like she did yesterday. We can't decide if this is better, or worse.

The docs would give her some drugs for either 3 or 5 days to try and close the PDA. However, these drugs would not be great for her brain. We are confident the docs will make the right call.

Nearly time for lunch. I'm gonna stuff my face (whats new).

Good morning sports fans

2007-05-05T07:05:00.001Z

No news last night so that means she is still stable. Will be going in to see her soon.

Mark has big, goalkeeper, hands.

2007-05-04T20:59:00.000Z

Today has been a steady day.

Katy has now been stable for over 36 hours after her extended bleed. This is good and, if she stays stable, they will try to take the breathing tube out of her, as I mentioned below. They will also be scanning her heart to give us a definitive answer on the PDA.

There have been some nice things today. She has been stretching her arms and legs and wiggling her hands and feet. I saw her get her nappy changed, and she had done a big poo. I was very proud. Leanne has been handling her quite often, but i'm still too scared to do much apart from what you can see above.

We had a nice walk to Tooting and a delicious "subway". Having to decide how many olives you want on your club sandwich can take your mind away from the fear. We have both felt it today, we just sit and look at Katy and she twitches in a strange way, then we think; "Is she having a bigger bleed?" and we watch her for the next five minutes until she does a normal looking wriggle and we breathe a sigh of relief. I suppose we had better try and get used to these feelings.

It could be a big day tommorrow, we will try and keep you posted when we can.

Big job

2007-05-04T16:10:00.001Z

Katy is still stable. Wriggling as ever, back on normal oxygen and her levels seem okay. I just went in to take todays photos nd they are crackers. Should be a little less blurry and you will really get an idea of how tiny she is.

I want to go back in with her to have a little chat, so i'll post later.

Slowly slowly catchy monkey

2007-05-04T12:58:00.001Z

It has been a good morning.

Katy has been stable now for over 24 hours after the bleed. She is not in the clear yet but we can breathe a whisper of relief. We have spent a lot of time with her today and been able to have physical contact which feels very special.

We spoke to the consultant earlier and he is happy with her. He has told us that she might not have a PDA (hole) and even if she does, only a small percentage of babies need surgery. If she stays stable, they might take the breathing tube out of her throat (extubate) tomorrow.

It feels nice right now,walking in the sun (especially as I know i'm gonna get grub) so we can all enjoy a positive time because it might not last long.

whoops

2007-05-04T07:47:00.000Z

There may be a Hotmail ad at the bottom of my last post. Please ignore it, unless you think Microsoft need a cash boost! This post should be ad free.

Morning yawning

2007-05-04T07:26:00.001Z

We will be going to see Katy after nine, when the traffic has calmed down. We will be trying a new route today, so fingers crossed that we won't get stuck in traffic, lost or lost and stuck in traffic!

We have spoken to Katy's nurse, Cindy, who is brilliant. She said that Katy had a stable night; a little snoozing, like her dad and a little fussing, like her mum. They have had to reduce fluids because of her PDA (hole) but she should have a scan today to find out more about that.

Thanks for all your messages, they are wonderful, keep them coming!

Little Miss Wriggle

2007-05-03T22:36:00.000Z

It has been a tough day today.

As you can read below, we had some bad news this morning and that really put our emotions through the juicer. Katy has been stable all day, she has been lying on her front and seemed to know that she should take things easy.

The staff have not really done anything today, to give her the best chance of survival. She has not had another brain scan but her blood results indicate that she is okay for now. There could be damage, but she has been moving all day.

Katy was visited by her Grandparents; Dean and Dawn. They were very happy to see her, they even forgot about getting stuck in the Kingston one way system!

Katy has had another set-back though. All babies are born with a "hole" in their heart that closes when they are born. Katy's has not closed, like lots of premature babies, and she will need some extra treatment to try and get it shut. It is not a massive issue yet as she is so small.

Two new pics today, sorry, they are a little blurry, but we did not want to use the flash. She is definately a Richards, note the wide nose and shovel hands.

We are all very tired, especially Nano and its time to turn in. The nurse who's looking after Katy tonight said that she was one of the wriggliest babies that she has seen for ages. This was a lovely finish to a trying day.

The tightrope on a rollercoaster

2007-05-03T14:44:00.001Z

Katy had a setback this morning. She had a bleed into the ventricles of her brain. This problem is extremely common in little babies. I will be blunt, because there is no other way to explain the situation. One of two things will happen. The bleed will stop and the blood will "melt" away slowly,or the bleed will continue/start again and Katy will have very serious brain damage.

Since the bleed happed, they stabilised her and her results have improved. She still seems stable,relaxed and comfortable but her life is on a knife-edge. Katy is being left alone as much as possible so she can try and fix this problem.

There is nothing anyone can do, it's pretty much up to her now.

Day two

2007-05-02T22:17:00.000Z

Here she is! It has been a good day today:

They put a "long line" in so Katy could have some nutrients.
Katy had some of Leanne's milk.
Her brain scan was normal.
Her potassium has gone down to normal levels.
Katy has been very wriggly. At one point, Leanne and her mum thought she might flip over!
We spoke to lots of very informative and helpful people
Leanne got seen by St George's post-natal dept.

To give you an idea of size, if I could lay her down on my forearm, with her head in my palm, her feet would be about two thirds of the way down my forearm.

She is still very fragile and there will be tough days, but we sholud celebrate all the good things that happen.

Better sign off now, will try to add some more info and pics soon.

Lets get things started

2007-05-02T08:02:00.000Z

We want to say a big THANKYOU for all your support in the last two days. We also want to thank the amazing staff at both Kingston and St Georges, the are giving us all a fantastic level of care.

Leanne and I will try and keep this site up to date so we not only keep you informed, but we also have a record of what is happening day to day.

This is going to be a long journey, please feel free to add you comments, it would be grat to hear from you.