How is Lydia doing?

Many of you have been asking what the latest is on Lydia, so I thought I'd put a few words on the blog. No photo's today, giving the girls a rest from the camera!
Helen & I met with the cardiologist registrar earlier today and he put our minds at rest about her condition and the operation she needs. Basically, the latest heart scans show that her heart appears to be "structurally" OK, with all the valves and chambers in the right place and the right size. Her problem is in the aorta, where she has some spare muscle tissue partially blocking this critical artery, meaning that her heart has to pump harder to get the oxygenated blood out to her body. They initially gave her some drugs in an attempt to open up her baby vessel to relieve some of the pressure in her heart. This hasn't worked, but the drug (which is basically a muscle relaxant) has had the effect of reducing the blockage itself. She will now need to stay on this drug to keep the blockage in her aorta as reduced as possible until she can put on enough weight to undergo surgery to remove the blockage. She is currently just over her birth weight, at 1.13Kg and she needs to get to be above 2Kg for surgery in Bristol, or more likely, up to 2.5Kg.
She still has a hole in her heart as well, but the cardiologists don't seem to be so worried about this, as it will either heal itself, or can be treated by further surgery at a later stage.
She seems happy in herself and is quite chilled-out when we change her nappy or give her a wash. The nurses took her off her oxygen for an hour yesterday and her saturation levels stayed at 100%, which is also encouraging progress.
Phoebe continues to impress us with her progress and the cardiologists confirm her heart looks OK, which is great news. She is off her oxygen for 6 hours at a time and seems to be taking this in her stride. She is also on 2-hourly feeds and is up to something like 28mL of milk each time!
The boys are enjoying their week off on half-term and mum & dad have no idea what day of the week it is, or even what month we're in!!
I'll try and get some more photos uploaded in the next couple of days.
Thanks so much for all your concern, prayers and support at this tricky time, they are VERY much appreciated.

Phoebe's First Bath!

Phoebe reached a real milestone today, when Helen was able to give her a bath for the first time! She really enjoyed the experience and was quite chilled-out about the whole thing (Phoebe, that is)!






She looks much bigger on that photo and it's not until you see things in perspective that you realise just how tiny she still is - check out the size of the bath in this one. I will need to buy a new washing up bowl for when the girls come home!



As you can see, Phoebe is making steady progress. She is now on 22mL feeds of Helen's milk every 2 hours. Her feeds are likely to be extended to be 3-hourly over the next day or so to mimic "normal feeding patterns" as much as possible. She is off her "flow driver" for 6 hour intervals and is tolerating breathing on her own really well.
Lydia is still on her flow driver constantly and gets very tired quickly when she is taken off it for short spells. She is on hourly feeds and is now getting about 8mL each time, which they have today just started adding some calories to - this is to try and bulk her up as quickly as possible so she can have the surgery she so desperately needs. Apparently it's a real balance between bulking her up and not putting unnecessary strain on her heart. The medical staff looking after her are fantastic, especially the nurses, who have to put up with me, and my shambolic attempts at changing very nasty nappies and putting on baby-grows without disconnecting any wires, pipes or drips!! I'm so used to handling Sam and Daniel that I forget just how fragile Phoebe and Lydia are!

The Bank Holiday Visit

Today the boys enjoyed visiting their sisters and made sure they are looking after the teddy's they bought them! This is a photo of Sam & Daniel with Lydia.

The Boys go Animal-mad!

This is a photo of Sam & Daniel visiting Lydia with mum earlier today.

The boys are making sure their sisters know which coulour to wear when it comes to rugby teams!!

The nurses report that Lydia had a good night and is doing OK today. She still looks very frail though. Mum particularly enjoyed her cuddles today without any oxygen pipes in the way!

A Double-Cuddle!!

It was great earlier today to have both of the girls out of their incubators at the same time. We were able to show them off to each other and formally introduce them as sisters!

Lydia is still struggling, but the doctors were pleased with the effect of the drugs they are giving her. The scan this morning confirmed that the baby artery hasn't yet re-opened, but the blockage in her own aorta seems to have reduced slightly. Coupled with this, her blood pressure has also reduced, which is taking some of the load off her heart. All the fussing over her made her quite tired this morning, so they are keeping her on her "flow-driver" to assist her breathing, that's the big pipe up her nose in this latest photo.


They finally managed to get a "long-line" drip into her leg yesterday afternoon, through which they can administer the drugs more effectively. She seems to be taking it all in her stride as usual. She evidently has her mum's pain threshold!





This is Phoebe showing off all her hair without her hat on! I thought I could see some auburn tints, so maybe she'll be a strawberry blonde?

We can't let the girls steal all the limelight, so here's a gorgeous photo of the VERY proud brothers! They've been to see their sisters quite a few times and love them loads. Sam can't wait to have someone to show off his reading and maths skills to and Daniel just wants someone to kick the football about with him!

The girls are now 10 days old!

So, the girls have been with us for 10 days now. After the shock of yesterday it was good to see the girls today and have a long cuddle with Phoebe. Lydia had a "long line" (big drip pipe) inserted today to make it easier for the doctors to administer the medicine she needs, so we haven't wanted to disturb her today, despite the strong urge to give her big kisses and cuddles. She seems comfortable and is taking things in her stride. It will be a case of monitoring her minute by minute to see how things develop over these critical days. They are both now having the maximum amount of milk hourly, which is a big step - well done to Helen for all the expressing! She will be supplying Sainsbury's at this rate! This means they are both off one of their drips and are now being fed the milk through a tube into their stomach (the green pipe in the photos) and some "lipid" which is presumably a fatty substance that is administered through a peripheral drip. Phoebe was off her oxygen for 6 hours today, which is a great step forward and it looked like she enjoyed having the pipe taken out of her nose, which I can totally understand!
Here are the latest photos, taken at 19:00 this evening...





This is Phoebe in her "I'm chilling out for the night" pose.






And this is Lydia in her "I'm glad today is over with and they've stopped prodding and poking me for a while" pose, bless her! I'm not sure her cousins Sara and Rachel will approve of all the pink sheets, but Lydia quite likes them!!




Apologies for all the medical details in these updates, it's a record for me more than anything, so I remember what the doctors are telling us! Thank you so much to all those of you who have contacted us or passed-on your thoughts and regards, we are much appreciative of your concern and prayers at this time. Thank you SO much.

Please pray for Lydia

We are just starting to digest some news re Lydia. The nurses were struggling to get some of their measurements from the sensors attached to Lydia yesterday and suspected the equipment. They tried new sensors, but got the same readings. This lead them to look in more detail. They arranged a heart scan early this morning and they have diagnosed a condition called "coarctation of the aorta", this appears to be basically a tight narrowing of the main artery coming from the heart (the aorta). This has only just come to light as apparently babies have other plumbing in their heart from being in the womb which closes down some time after birth. This appears to have happened with Lydia yesterday and when the systems switched over the readings went awry. This condition needs surgery urgently, but she is still about her birth weight (1.09Kg - small!). They generally need babies to be at least 2.5Kg prior to surgery, which they do in Bristol. She has since had another scan and the paediatric cardiologist confirms the condition. She also has a hole in the heart, but this is not the immediate priority, as either that will fix itself, or is something that can be looked at when Lydia is a bit older.
What they are trying to do now is give her some drugs in an attempt to re-open the closed-down "baby artery" to give her a back-up supply in case she gets poorly while they try and bulk her up. On her current schedule, this would be expected to take at least 6-weeks before they would consider surgery, unless they need to act in an emergency. One side affect of these drugs can mean that she could stop breathing, so they will be monitoring her closely and ventilating her if required. If the drugs don’t re-open the baby valve, then they may need to give her beater blockers, to presumably control her blood pressure.
Phoebe doesn’t appear to be exhibiting the same symptoms, but we are hoping they will proactively scan her to rule out the same problem over the next few days.
They've both got a bit of jaundice for good measure, but that's the least of our concerns at the moment!
We are again totally at the mercy of God, and acknowledge that of ourselves we can do nothing. Our prayer is that God would continue with her and give her even more of the fighting spirit that she has exhibited this far, after all, she's a Bodger!!!

Big Step - The Girls are in Baby-Grows!

Here are a couple of new photos of the girls. They look quite different now they are in baby-grows! They are both continuing to do well, and the doctors seem pleased with progress this far. They have both now been moved from ITU into High Dependency, which is a step in the right direction - getting closer to the exit door by the day!!





This is mum having a cuddle with Phoebe.








And this is Lydia enjoying a bit of well-earned rest!

The Girls Escape!

The girls have now been with us for 5 whole days and whilst Helen has been lucky enough to have a quick cuddle with Lydia, Phoebe hasn't been allowed out to play! Today was quite momentus for us, as I was able to have my first cuddle with Lydia and Helen was able to hold Phoebe for the very first time. Here's a few photo's to prove it....!

It was truly FANTASTIC to have my first cuddle with one of my daughters!

You will notice that Lydia was allowed off her oxygen and could give her nose a nice rest from the nasty pipes!

The nurses particularly liked my "Who's the Daddy" T-shirt!





This is one of Helen, holding Phoebe for the very first time.
She had to keep her oxygen pipes in place. These are not ventillating her, just providing a slight pressure in her lungs, so she doesn't wear herself out too much just from the action of breathing.



The doctors did their round while we were with the girls this morning, and "so far so good"!

THE BABIES HAVE ARRIVED!!!!

OK, so I haven't been updating the Blog recently, this is because things have been a bit manic over recent weeks with weekly visits to Bristol or Cardiff Fetal Medicine Units. Things reached a head last Friday (12/05/2006) when we visited the unit in Cardiff. They recommended the babies were born now Helen is 32 weeks and booked her in for an elective C-section on Monday 15/05 as things were still pretty unstable with the TTTS. The result, as you will see below, is two beautiful baby daughters. Their names are Phoebe Grace and Lydia Amy Bodger and they were born in Cardiff on 15/05 at 11:31 and 11:32!! Phoebe was 3lb 12oz and Lydia was 2lb 6oz, which is tiny I can tell you!! They seem OK and are being well cared for by the neonatal unit in Cardiff. We thank God for their safe arrival after months of uncertainty. Mum is doing well and the girls are progressing slowly. Interestingly, Lydia is doing much better than her sister, as she is used to fighting for her share of things!, but Phoebe is coming along slowly too. Anyway, that's enough of the words, have a look at some photos....

This is a photo of Phoebe taken by the Neonatal nurses in the ITU ward when she was about an hour old. The tube in her nose isn't ventillating her, it is just assisting her own breathing to ensure she doesn't get too tired.






This is another photo of Phoebe taken by me when she was about 3 hours old. The wires, drips, monitors and pipes were a bit alarming at first, but we're slowing getting used to them!





And here are similar photos of Lydia. I still can't believe that we have two girls as well as two boys. I keep calling them "he". I'll soon get the hang of it I'm sure. Wow - me, a father of four - that can't be right can it???!!



These photo's don't give you a good idea of scale,







so have a look below for a few others...




This is a better shot for giving you a feel for the size of the girls. This was the first cuddle Helen was able to give Lydia and was taken on 17/05, when Lydia was "allowed out" of her incubator for the first time. It's all a bit tricky with the wires and pipes!






And this is a cracker of Sam and Daniel, the BIG brothers - they don' seem at all phased, and love talking to their sisters through the funny looking "goldfish bowls" as they call them!





This was taken today (on 18/05) and shows another step forward for Lydia - you will notice she hasn' got her hat on, so at least we can see what she really looks like now! I call this the "ET-pose", but don' tell anyone!
Phoebe still isn't well enough to come out of her incubator, but Helen changed her nappy for the first time today, which was very exciting!!





Anyway, hopefully that's given you a little glimpse into our little world over the past few days. I'll try and load up more photos as I get time. Please keep remembering these little ones, as they are so tiny and fragile. Thanks, with all our love, Dave & Helen xxx