No news is good news

No new news again today. Lydia looks a bit "grey" today, as she's been taken off all pain relief now, but I'm sure she will perk up when she realises she's on for a trip back to sunny Wales on Wednesday!! They have taken the line out of her neck now and she pulled her nose tube out, so when they pull the short line out of her arm (hopefully they will stop the blood thinning drug tomorrow) she will be "pipe free"!! Just a few wires left to go! Lydia was swabbed again following her surgery and the good news is that she is still clear of the dreaded MRSA!! The plastic surgeons will be contacting the team in Cardiff to keep an eye on the nasy black patch of skin on her arm and her ring finger. Her pulses are still faint. The dietician came to see us today and confirmed that Lydia needs more calories again to make up for the weight lost since surgery. She also needs to start growing in length a bit more, so they have started her back on the fortifier added to Helen's milk. She is still having trouble remembering to breathe while sucking from the bottle, so they may need to put another nose tube down for her night feeds, we'll see how she goes over night! Report more as it happens...

No New News!

Just had a long update from the hospital in Bristol. Lydia has had a settled night and is making good progress. She has lost some more weight, so they are now to start giving her a fortifier in her milk again. She is starting to take her milk well from a bottle, and is getting the hang of continuing to breathe while sucking, which is a good trick and stops her going blue!! The doctors can still feel faint pulses in her right arm and leg, and they feel a bit warmer now, which is encouraging. They have moved the line out of her neck and have moved the heprin drug onto a new line into a vain in her left arm! He left arm went a bit pale and cool with this new line in place, so they are monitoring this as well now! She certainly doesn't like having plastic tubes inserted into her anymore - and I don't blame her either, she's had enough of them! The team in Bristol have arranged for the plastic surgeon to take another look at her "burn marks" on her right arm and ring finger next Tuesday, and they have also booked an ambulance to transfer her back to Cardiff next Wednesday! It looks like things are starting to improve and head in the right direction...again!

Just to give you a sense of scale!

Here's a photo of Phoebe in Lydia's cot, just to give you a sense of scale. Phoebe is now weighing 7Lb 4Oz, and Lydia has lost quite a bit since surgery and is now 2.3Kg (not sure what that is in "real money")! Lydia was keen to "check out" her sister, although she didn't really appreciate her lying on her very sore right arm!!!

The plan for Lydia!

I know a few of you didn't like seeing the photo of Lydia in intensive care with all the pipes and wires (especially Lewis in Clevedon!!), so here's a slightly better one of her in the cardiac ward. From her heart operation perspective she is recovering well. They have increased her feeds to almost 40mL every 3 hours, which is a big step. Most of the feeds are being given through her nose tube, but it was very exciting for me to be able to give her the first bottle earlier today.
She took 30mL straight from the bottle, but then got very confused about sucking and breathing, so I gave her the rest through her nose tube as you can see here!
Her right arm and leg are still a cause for concern, so they are keeping her on the Heprin (blood thinning drug) until next Tuesday, and are monitoring her very faint pulses every 2 hours. Following this, and if she is continuing to improve (and there is an ambulance available), the plan is to move her back to the Heath Hospital in Cardiff next Wednesday, which would be fantastic. They will be concentrating on establishing feeding, and then maybe soon she'll finally be allowed home - hooray!!!

Just a quick update - no new news!

Lydia was moved out of intensive care back to the cardiac ward at lunch time today. She is a bit more alert now and the ward staff will be monitoring progress on her heart and her arm for the next few days. I suspect they will be keen to transfer her back to Cardiff in the next few days, which will be excellent for us!

Better news on Helen's Birthday today!

It's Helen's Birthday today and the boys and Phoebe have just been helping mum unwrap some of her presents in bed! We don't quite feel complete without Lydia, but we've just phoned the hospital in Bristol for an update. She had a good night last night. She was taken off her ventilator yesterday lunch time and was put on the c-pap machine (which she would have been very familiar with)! She then came off this at midnight last night, so she's now breathing fully on her own, which is great news. They are now slowly taking out the remaining tubes and drips, with a view to taking her back to the cardiac ward later this morning. The plastic surgeon came and reviewed her arm last night and thought he could hear some faint pulses in her arm. He thinks the radial artery is compensating for the ulna (excuse spelling) being broken! They will be monitoring this to see what the effect has been/will be longer term. The tip of her ring finger is still quite purple, which they think was caused by a clot when her artery was broken, and they are hoping this will disperse with the blood thinning drug she is still on. The nasty black patch of skin left on her wrist they are hoping will form into a scab and come off, but they will monitor closely in case it needs some form of surgery. In terms of her heart surgery, they will be scanning her again over the next day or so to see how things are going, both with the repair to her aorta, and also the affect surgery had had on her "hole in the heart" (VSD). Anyway, I'd better go and make the Birthday breakfast, report more as it happens. Thanks again for your ongoing thoughts and prayers, they are still very much appreciated.

Mixed progress

Let's start with the positives - Lydia is recovering well following the heart surgery. She is still being ventilated, but they hope to start weaning her off that during the day today. She had a fairly stable night, with only a few de-saturations. We haven't heard anymore from the cardic team yet as to their thoughts on how successful the surgery has been.
Her arm is still a cause for concern. Basically, following her surgery, and on admission to the intensive care ward, they tried to get some lines in an artery in her right arm. This failed on two attempts, and resulted in her lower right arm and hand turning very white. This then turned dark purple. It seems that her main artery in her right arm is damaged irreparably, so she has been put on a drug to thin her blood and try and remove any clots. The doctor on the ward warned of potential longer term growth problems with this arm as a result. This morning they also are considering getting a plastic surgeon to take a look, as some of her skin has turned a much darker colour. It is a real shame this has happened, and it just seems to be one thing after another. Sorry there's not more positive news to report. I was so hoping there would be too!! Please keep praying...

Unsettled night!

We had another unsettled night last night. The hospital staff phoned in the night to check if Lydia could have a blood transfusion, as her haemoglobin levels had dropped quite considerably. She also has a problem with circulation in one of her arms. Her right hand looked quite white when we saw her yesterday, so they called the surgeon out in the night. He doesn't think this is anything to do with the surgery, so they are linking it to two abortive attempts at getting arterial lines into her arm after the surgery. They eventually got the line in one of her legs, and are monitoring the arm situation closely. They have given her a blood-thinning drug to see if that helps. She was also given more of the drug to paralyse her, as she attempted to pull out her ventilation tube again! We thought that the operation would bring an end to the concerns with Lydia, but it looks like there are a few new ones still to come! Arghhhh, we need some sleep (and some more positive news for a change)! Although, we do understand it is still very early days after the operation!

Lydia has her operation

Don't click on this photo unless you've got a stong stomach!
Lydia finally had her surgery today. I took her down to the anisthetic room at 13:30 and then we had a long anxious wait until we eventually saw her in intensive care at 19:30 - that was the longest wait of our lives! Apparently, the surgery didn't take that long, but it was all the preparation and then sorting her out in intensive care after the operation that took the bulk of the time. We saw the surgeon, who was pleased with the operation. He told us her aorta was just 6mm in diameter at the point where he removed the blockage. It is fantastic how they can operate on something (and someone) so small! Aparently, Lydia didn't enjoy being ventillated in intensive care, so they have temporarily paralysed her, which should wear off over night. We'll report more on her progress over the next couple of days, so watch this space! Thanks yet again to all who are thinking and praying for us!

What......not AGAIN, surely not!!

So, we get a call from Bristol in the night to warn us that Lydia's operation might be moved earlier in the day on Fridy (today) and then at 08:00 this morning they confirm we're back on track for a 13:30 operation. We arrive in Bristol at 11:00 this morning to see that poor old Lydia has had "nil by mouth" all morning - a good sign things will go ahead, only to be told at 14:00 (by the very apologetic surgeon) that he is available to do the op, but due to another emergency, he didn't have a full team available. I offered to be a scrub nurse for the afternoon, but they didn't take up my kind offer - something about not having a spare theatre as well!! The surgeon has re-booked the operation for Monday at 12:00, and said that even if he has to work on into the evening he will "do" Lydia on Monday. Not sure I like the sound of that, but I appreciate his efforts! So, another weekend on her Prostin drug for Lydia, bless her! They did mention that if she gets worse over the weekend, they would consider an emergency op during the weekend, but I strongly suspect they will "keep her going" until Monday. As you can imagine, it's really tricky remaining positive through all this, but we are confident there is a purpose to it all ultimately. We're still holding onto some verses from the Bible - if you've got one, check out Jeremiah 29 v 11.
Despite another tiring day, I'll end on a more positive note with my latest joke (pinched from a Penguin wrapper):
Q: Why did the elephant take a load of tissues to his friends party?
A: Wait for it.....Because he was a big "party pooper"!
Now that's much better than Uncle John's jokes, trust me!
Report more on the Bodger saga as it happens!

Lydia has a few episodes...again!

Lydia was obviously upset about not having her operation on Wednesday as planned, so she decided to protest about it to the nurses today! She had a few turns at stopping breathing and stopping her heart just to keep the medical team (and her mum & dad) on their toes! This is most likely due to the drug that she's still on - once the operation is done, she won't need this any more - hooray!

"To be or not to be" - that was the question!

So, we arrived in Bristol bright and early to meet with the surgeon and sign the consent forms for the operation today. We finally met with him at 13:00 when he mentioned he had just completed one major open heart operation, had another quick emergency heart op to perform and then he would get to Lydia, at around 15:30. This came and went, 16:30 came and went and then at 17:00 we got news from the theatre that all hadn't been so straight forward with the emergency case after all and Lydia wouldn't be having her operation today! By this time Lydia was pretty hungry I can tell you! As soon as we heard the news, I wooshed a good helping of Helen's "gold top" milk down her nose tube and she soon settled down! We met with the surgeon again and he explained that he has now booked her in for her operation on Friday at 13:30. It was quite a day today, but we really appreciated knowing many of you were thinking and praying for us. If you could do the same on Friday, we would be very grateful! Thanks guys!

Lydia arrives in Bristol

Lydia finally made the trip across the Severn Bridge today. She has settled-in well to her new environment and doesn't mind sharing her cot with her sister. This is the first time they've been this close since their birth!





The team in Bristol got straight on with all their checks, bloods, scans, X-rays and here is Lydia having her ECG trace recorded - it looks worse than it is. She quite enjoyed it actually!!

Another good day

Lydia has had another good day today, no blips in her progress. We finally saw the MRSA swab results for ourselves and can confirm she has now received the three "clear" results we were praying for! No news yet on what time tomorrow she will be going to Bristol, so we'll be waiting by the phone. No news on proposed operation date for Wednesday yet either. Thanks again for your ongoing thoughts and prayers, they are VERY much appreciated.

Lydia continues to do well

Lydia has had another good day today, with no "blips" in progress! The nurses haven't had time to check the third MRSA swab results, but are assuming they are clear and have stopped barrier nursing Lydia, on advice from the "infections" team! She is now back in a 4-bed ward, so has some company again. She's tried-out most of the wards already! She was being fed Helen's milk continually via a pump, but is now back onto 2-hourly feeds via her nose-tube. She wakes 5 mins before her feed time and the settles pretty well after it. I just wish she could teach her sister Phoebe the same trick!!! She is no longer on any oxygen, and the nurses have again removed loads of the monitoring wires she had attached to her, so she's gradually getting back on track. The nurses are booking the ambulance for next Tuesday later today, and it sounds as if half of the staff will be going with her in the ambulance to Bristol. It's amazing what the offer of a morning out of the hospital will do for some of them! Report more as it happens...

Lydia's life in his hands

We're still waiting for the third set of MRSA swab results to come back, but have just had confirmation from Bristol that Lydia is booked in for admission next Tuesday (18th July), with the surgery the day after. She has an Italian surgeon, Mr M Caputo, so we fully expect her to emerge from surgery with much better football skills than she went in with!! Because I'm a bit sad, I even looked him up on the NHS web site to see how he is rated. If you follow this link you will be able to check him out, including his "survival rates" to date - it's amazing all this info is available on the Internet!! Please pray for this guy for next Wednesday - thanks!

Quick update today

Second MRSA Swab Test Results: Praise God these were also clear. Just one more "clear" to go now!
Blood Culture Results: These were also "clear", indicating that Lydia doesn't have any infections. They stopped giving her the antibiotics as soon as they saw the results.
Op Preparations: The cardiac team are now starting to ramp up their activity to arrange the move of Lydia to Bristol, planned for next Tuesday.
How is Lydia in herself?: She hasn't had any more episoldes of stopping breathing or her heart stopping, which is good! She sleeps most of the time, but when she's awake she is very active - she even manages to pull her tubes out quite often, which keeps the nursing staff on their toes, but is a sign to me that she's getting stronger!

Here is the trouble maker!

This is a photo of the trouble maker herself taken earlier this afternoon on the cardiac ward, showing off her auburn hair in the Cardiff sunshine! She is very calm and peaceful (for a few mins)! OK, here is the update:
MRSA Swab test results: Test taken on Monday came back clear, just two more "clears" and she'll be certified "clean" again and they can stop ringing the bell in front of her cot everytime they move her, shouting "unclean, unclean" - well, they won't have to wear the aprons and gloves any more, but you get the picture!
Blood cultures: Should be back tomorrow and this will confirm if she has an infection that is stopping her breathing, if clear, they will stop the antibiotics.
Prostaglandin: Sorry this is all so medical, but I know a few of you appreciate the detail (Alison and Neil in Gainsborough)! This is the drug to reduce the blockage in her aorta (pipe off the top of her heart). They have halved the dose of this today in case it was this that stopped her breathing.
Why is this happening? At the moment they are not sure, but are trying hard to identify and eliminate all the likely causes. They are also thinking it might well have been the anaesthetic they gave her prior to her eye test on Monday that started the chain reaction of events! We'll know more after the blood cultures are back.
What about the heart op? - If the next 2 MRSA swab results are clear then the plan is to move her to Bristol next Tuesday and operate next Wednesday. If all goes well, she is likely to be in Bristol for about 5 to 7 days, before coming back to Cardiff to recover and re-establish feeding. AND THEN THEY MIGHT EVENTUALLY LET HER COME HOME - We just can't wait!!!
How is Phoebe? - Doing great. She had her jabs yesterday afternoon and seems fine.
How are the boys coping? - Amazingly well.

Lydia moves again!

So, within seconds of Lydia being admitted to the Intensive Care ward she started behaving herself again - typical!! It's just like when you take your car to the garage to sort out the problem and lo and behold it starts performing nicely again, or like when you go to the dentist in agony and the minute you sit in the chair you can't even remember which tooth it was that was giving you trouble!...anyway, I digress!
The lumber puncture test came back clear, so it wasn't meningitis. We're still waiting for blood culture results to see if there is some infection that needs sorting. These should be back in the next couple of days. We're also still waiting for the latest MRSA swab test results to come back. She needs three clear results before she is certified clear of it, although the antibiotics she is still having as a precautionary measure might well see the majority of that off.
She was moved back to the cardiac ward earlier this evening and seems OK in herself, but pretty tired. They are feeding her down a nose tube again so she doesn't get too tired. If all the tests come back clear and they can't blame "an infection" they will put the "blip" down to premature babies just taking a while to work out how to breathe whilst sucking (apparently this is common with little babies, especially those with heart problems)!!! They also think all the "fussing" (eye tests, hearing tests, bloods to be taken, scans, feeding from a bottle, etc, etc) yesterday might have had something to do with it. In terms of the heart operation, we spoke to the cardiologist this evening and he will contact Bristol to arrange a date for the op later this week, so long as the MRSA swabs come back clear. It sounds like there is quite a waiting list for heart ops, so the op itself may well be later next week. We pray she has a stable night tonight and it's all upward progress from her on in!

Lydia is getting her money's worth out of the NHS!

Lydia took a turn for the worse today. She started de-saturating (stopping breathing) early this morning when taking her feed from a bottle. She went blue later when Helen was in giving her another bottle and needed resuscitating. She was very unstable when having her eyes tested later this morning and then went down hill following that. The cardiac team attended to her during the afternoon and took bloods, tested for meningitis, examined her heart situation, performed brain scans and did all the usual checks. She needed to go on some oxygen, so when I went in at 19:30 this evening they took the decision to move her to paediatric intensive care. She flat-lined a few times on the journey up to her new ward, but after 5 mins in her new environment seemed to come back to "normal". The consultant now looking after her thinks her symptoms may well just be caused by an infection, so they will be giving her a strong dose of antibiotics as a precautionary measure (which will also knock-out any MRSA in her body, but NOT on her skin). She has had her long-line drip in her leg for about 4.5 weeks, so this may well be a source of the infection, but they are reluctant to remove this as it is through this they administer the muscle relaxing drug that is relieving her aorta restriction! It's all inter-related! They will see how she goes over the next few hours, but they may well need to ventilate her if she gets worse. We need to wait for various test results, but at the moment they don't suspect meningitis. We thank God her brain and heart scans were normal and trust Him yet again for this next stage in the exciting journey He has planned for us. All this is likely to mean a delay in the heart surgery, but it's vital she is strong going into the operation. I hope to be reporting some more positive news again in the next few days. Will keep you posted, thanks again for being interested and bless you for thinking of us.....

Lydia on the move!

On their ward round today, the SCBU team decided that Lydia no-longer needed to be on their High Dependancy ward and suggested she be moved to the Children's Hospital part of the Heath. I have just walked-in from physically moving her myself down to the cardiology ward (with one of the nurses)! This is another big step in her progress and a whole new set-up for mum & dad to get used to! There was some confusion in her "discharge notes" about her MRSA, in that it said her last set of swabs had been clear from her eyes, nose, throat AND umbilical! This is not what we (or the nurses) had been told, so I asked the doctor to double-check on the system and he confirmed this was the case. She will still have swabs taken next Mon, Tues & Wed to confirm her current status, which will be a good double-check! More confusion today (as usual) when the neonatal consultant mentioned in passing that "I expect as Lydia is doing well, they will leave her a couple more weeks before surgery". We will wait to see what the cardiologists say, as she is now fully under their care. The progress continues...

New News on Lydia

Helen has just come back from meeting the cardiologist at the hospital. They met with the surgical team in Bristol yesterday and have confirmed that Lydia will be moved to Bristol next Friday (14/07), with a view to performing the heart surgery early the week after. HOWEVER!!! - THIS IS ALL DEPENDANT ON THE MRSA SITUATION. The swabs came back clear for her eyes, nose and throat last week, but it was still active in her umbilical (belly button). She is having a special disinfectant bed bath this week, as she's not allowed a proper bath due to the risk of infection through the long line drip in her leg. This special cleaning will stop on Friday. They will then re-swab her next Monday, Tuesday and Wednesday to see how things have progressed. If she still has signs of MRSA she will not be able to go to Bristol until things are clear. She is piling on the pounds and now weighs 2Kg!

Phoebe now weighs 5Lb 9Oz and here she is chilling out in her moses basket yesterday evening (just before she woke up for the night - I'm still not complaining though!!!!)

Daniel had a great time at his 4th Birthday party on Sunday, and here are a few photos to prove it!

Here is Daniel with all his cousins enjoying tea on the lawn. Uncle John did tell a few of his jokes, but thankfully no-one can remember them!

One of Daniel's favourite presents was this water slide from mum & dad. I fully expect to see Sam and Daniel entered for the luge event in a future winter olympics judging by their natural skill & ability!