Photos and a Saturday Night Update from Kenny

Ffion is still taking most of her feed from the bottle, but the nasogastric (NG) tube was put in again last night to give her the rest of the feed to ensure she was getting the right amount of total feed every 3 hours.
 
Daddy was able to do 2 feeds today & changed several nappies!
 
Ffion spent most of her time asleep today, but generally wakes up for nappy changes! And her eyes tend to be open widest for about 5 minutes post-feed.
 
She currently has no monitors on as the nurses are happy with her and her next blood tests are still planned for Monday.

Friday Night Update from Kenny

Ffion is now taking nearly all her feed from a bottle and today Daddy was able to give her 2 bottle feeds (there are great advantages to Daddy working on site at the hospital!). This is great progress. The doctors were debating whether to try taking out her feeding tube, but before they did she pulled it out anyway!!

There is also good news on the weight front with Ffion last weighing in at 2.93Kg (6lb 7oz)! 

Her next blood tests will be on Monday and please keep praying for the creatinine levels to drop. Since the operation they have measured at around 150 and we are really hoping for a reduction in this level over the weekend. 

Thursday Night Update from Sally

I've been at the hospital all day today, as is getting to be usual practice for a Thursday. When I arrived, Ffion was pretty out of it. Her epidural had stopped working effectively overnight, so she'd been switched to continuous morphine. Thankfully this was changed to an 'as-and-when' dose which she only had once throughout the day. She's on regular paracetamol which seems to be managing any discomfort she still has.

 

As a result of being on the morphine she was pretty dopey this morning and didn't really take her bottle, but at her 5pm feed she downed the lot, so was obviously feeling better, She was also having several 'desaturation' episodes when her heart rate really slowed and her oxygen saturation dropped but these seem to be getting less throughout the day and are likely to be due to indigestion.

 

The dietician is beginning to prepare us for coming home, although we don't have a date yet. I had a lesson in putting a feeding tube through Ffion's nose into her tummy, as she'd managed to grab it and pull it out. I was pretty bad at it and will need a bit more practice. Thankfully, we can come into the ward any time day or night if she pulls it out and I can't put it back, but obviously preferable if I can do it myself at home. 

 

We are hoping it may be some point next week when she comes home, and I for one, can't wait :-))

Wednesday Afternoon

Ffion is sleeping a lot as she recovers from yesterday's operation. The good news is she is producing wee and the doctors appear happy with things. She still has an epidural in for pain relief and is on increased antibiotics for the 48 hours post op. 

Her next blood tests will be tomorrow and hopefully she will be more awake then so that Mummy can give her a bottle of milk!

A "proper" blog update from Sally

Ffion's operation went really well this morning. It took a bit longer than expected and was about 4.5 hrs all in all. The surgeon said it was a bit fiddly but she had a big smile on her face so I think she was chuffed it had gone well. I can't imagine how difficult it must be to suture the ureter of a 5lb baby - I certainly wouldn't want to do that! FFion must have been a bit of a unique case because we were asked to consent to photographs being taken for teaching/publication purposes so her insides will be famous!

 

Ffion was awake when we went up to recovery which meant she could come down to the renal ward and didn't need to go to ICU. She was hungry and fed straight away when she got back. She is on high dependency for now which means she has lots of checks and one-to-one care until she is a bit better. She has an epidural in for pain relief, probably for about 36 hours then she gets some paracetamol.

 

When I left this evening she hadn't really produced much wee so they were keeping a close eye on that. Hopefully it's just taking a while to get going and there isn't a problem... We'll know by tomorrow.

 

Thanks to everyone who was thinking and praying for Ffion today - the alternative options for her if the surgery hadn't gone well were not good ones, so we're really pleased. (Come on girl, wee for us!!)

 

Next big goal... getting her home...

 

Sally xx

Operation Okay

Ffion is safely through her operation and it was successful! The surgeons are happy! She is back on the renal ward (not in PICU which is great!) and was awake and so Sally was going to try feeding her. More news later.

Monday Update from Sally

Today was a good day from a feeding point of view - Ffion had her whole 10am feed by bottle and looked like she wanted more! Unfortunately for her she had to wait until 1pm. She was kept well occupied though by a lovely walk outside in the pram and a cuddle from Uncle Merv & Auntie Kim (our pastor and his wife) who came to visit. We managed to get her to have all of her 1pm feed by bottle but it really tired her out and there was no chance at 4pm, but she's made fantastic progress with that today.

 

I had a lesson today in feeding using a nasal tube and pump at home and got all the kit delivered to the ward. It's all fully portable, which I wasn't expecting, so that means we can set it up and take it out with us so we won't be tied to the house all the time. My next lesson before we go home will be in placing the tube through her nose and into her tummy. This is pretty daunting on your own child and I'm not under any pressure to be able to do it, but it'll save us a trip to the hospital at 3am if she decides to pull it out!

 

Tomorrow is her big operation so we had the visits from the anaesthetist and blood tests prior to all of that. We're just hoping and praying everything goes ok tomorrow but she's in the safest hands possible! We'll update the blog when there is news tomorrow.

 

Some New Photos and Blood Results!

 18th July - Sleeping Beauty

 22nd July

23rd July - Ffion with Mummy and Big Brother Fraser

This morning has also brought some good news with Ffion's latest blood results. Her creatinine level has continued to drop, with the latest reading being 154.  Her urea and potassium levels have also dropped a little. We know that many of you have been praying, especially for the creatinine levels to drop....thank you...and please keep praying as they still have a long way to go to get back into "normal" range.

The doctors are happy with how things are going and plan to check her bloods again sometime tomorrow. 

A Big Blog Update from Sally!

Big news from the hospital!

Ffion is due to have her operation on Tuesday!

 

We went in to chat to the surgeon this afternoon who explained she'd scheduled Ffion for surgery on Tuesday. She's going to have a 'pyeloplasty' which effectively means cutting out the obstructed bit of ureter piping from the kidney and joining the two normal bits back together. They will then put a stent in the tube for about 6 weeks to keep it open as the stitches heal, which will then need another operation to remove.

 

She's first on the list for Tuesday at about 8.30am and the operation will probably take about 4 hours. As with any surgery, it's not without its risks. The surgeon has been very upfront with us and explained that until now the youngest child she's performed this surgery on was 2 months old but she's happy to do it. The reason for doing it so soon is that Ffion needs to have her nephrostomy bag removed due to the risk of infection and something permanent has to be done in its place. We have had all the possible alternatives explained to us in case the surgery doesn't go according to plan but thankfully have been told the risks are small. She will probably go straight to Paediatric Intensive Care for a day or so afterwards due to the length of the operation.

 

Ffion now seems to be starting to gain weight a little every day which is great news. She was really awake today, her colour looks good, she's waking up for her feed and everyone is commenting that she looks much more like a normal baby rather than a poorly one.

 

Although we're obviously going to be concerned on Tuesday, I'm glad we're getting the obstruction removed because it gives the doctors chance to assess what the kidney can do with all its surrounding bits working properly and it feels like we're making progress.

 

Fraser enjoyed his trip to see "Bebby Ffion" today (Hooray for playrooms on children's wards!!). 

 

Sally

Friday Night Update from Kenny

I am now back at work after my paternity leave. The good thing is that I work at Cardiff hospital and so was able to pop in before work, at lunchtime and after work to spend some time with Ffion.

On a positive note her creatinine level is slowly creeping down. Today it was 189. Please continue to pray for this level to drop as it is still far higher than they would like.

Unfortunately her potassium levels have risen and her sodium levels are low. To try to correct these her milk formula has been changed and this will be monitored over the weekend. 
 They are also planning to do more regular blood checks to monitor things more closely.

We are still living very much day to day and don't really know what the plans are. We are hoping to speak to the Urologist tomorrow.

Tomorrow afternoon we will take Fraser back in and it will be the first time that the four of us have been together as a family so we are looking forward to that. Fraser is coping remarkably well, helped by having Grandma around.

Kenny

Wednesday Update from Sally

Not much to update today. I went into the hospital this morning and had a nice cuddle :o)

Kidney-wise everything remains the same. They are going to clamp the nephrostomy tonight in preparation for another dye scan tomorrow. Hopefully they should then finalise the plan about her operation.

Ffion lost more weight again today which is getting a bit demoralising. She is now on a double scoop of the duo-cal to give her extra calories and hopefully we'll see an increase in her weight in the next few days.

Fraser has just come in and wants to "help" so I shall leave it there. He's been to watch the planes with Daddy :o)

Sally x

Tuesday Update

Today has brought further good news, although it is greatly confusing the doctors!

Since the nephrostomy Ffion's creatinine levels have remained at the same level, leading doctors to make the decision to clamp off the the nephrostomy tube this week with a view to then removing it. HOWEVER, this morning her creatinine levels dropped! They are still much higher than "normal" but moving in the right direction!!

As a result of this her nephrostomy tube has not been clamped and the blood tests will be repeated tomorrow and the dye test repeated on Thursday. Thank you for your prayers and please keep praying that her creatinine levels will continue to drop.

This does mean that if her nephrostomy remains in place she might not get home so soon but it is a good sign from the view of her kidney function.

Ffion wasn't feeding from the bottle so well today as she was very tired but that isn't unexpected as she is still very small.

We are pleased that our little girl is confounding the medical professionals and pray that her kidney function continues to improve!

Some Good News!

Hi everyone,

Kidney news.
Today there was a multidisciplinary team meeting about Ffion with nephrologists, radiologists and urologists. They all seem to be agreed that the nephrostomy hasn't worked so they are keen to remove it as it is just a potential source of infection. They want to do that with some care so today after we left they were going to do a blood test as a baseline and then clamp the tube so it doesn't function anymore. They're going to monitor her kidney function with blood tests until Thursday when they will do another dye scan to see what's happening without the nephrostomy tube functioning. If all is stable, they will remove her nephrostomy. Then they will plan when they're going to do her obstruction removal op.

Feeding news.
Ffion is now on 3-hourly feeds. She has about 1/4 of this by bottle and the rest delivered by pump down her feeding tube. She has had some calorie powder (duo-cal) added to her feed and today has gained weight for the first time :-))

The really good news is that today we began to have lessons on feeding through her tube. This means that hopefully, once her nephrostomy has been removed, we may be able to take her home. YAY!!! It will be a bit restrictive as we will be tied to home for feeding, but I don't care! Just to bring my little girl home will be so good. We think it might be early next week but will keep you all posted.

Today has been a good day :-))

Sally
 

Fraser Meets His Little Sister!

Today's highlight was Fraser meeting his little sister for the first time. Mummy and Grandma took Fraser into the hospital and he was quite gentle with "baby Ffion" and even enjoyed a cuddle with her.

There has been no significant change in Ffion's condition but the good news is that her milk feed has been increased slightly.

Daddy plans to go and spend tomorrow morning with her.

Friday Night Post from Kenny

As you can see Ffion was a bit more alert today, with her eyes wide open. It was lovely to see.

She has now moved into the adjacent room, it is a little smaller but she has it all to herself.

Daddy spent time with Ffion today and was able to give her two bottles as they are now trying to supplement her tube feed with a bottle every two hours. It has had limited success so far but hopefully she will start to show more interest.

Her weight has dropped a little, down to 2.41Kg, and the doctors are keen to see her putting on weight. They are going to try increasing her milk feeds a little but if necessary will add some extra calories to "beef her up a bit" (quote from Auntie Diane!).

Fraser and Mummy enjoyed a trip to the farm park with the toddler group from church today. They had a lovely picnic and fun exploring and chatting with friends. Fraser is going in to visit his little sister for the first time tomorrow and has a balloon for her.

Thursday Photos......

Here are some photos taken on Thursday 14th July.

Thursday Night Update from Sally

Hi everyone,

Dye scan day!! Ffion's had her scan this morning. They did it twice as they got a result which showed a completely blocked kidney first time round. We know that can't be right as she's weeing so something is getting through. The second scan showed a partial obstruction in the ureter right up near the kidney which is hindering the kidney's ability to drain. Although this was the result we were hoping for, there is a big 'BUT' coming up... Unfortunately her creatinine levels have not fallen at all, which they should have done in 48 hours since her nephrostomy was done, if they were going to at all.

So it looks like we have a picture of both a partly blocked kidney and a poorly working one. So the plan appears to be this...
1. Operate to remove the blockage within 6 weeks. The exact timing for this will be discussed at a case review on Monday. They would like her to weigh a little bit more first, but can't leave the nephrostomy tube in for longer than that due to risk of infection.
2. Monitor after that to see what the kidney can do once it's not hindered by the blockage and take it from there.

Today was the first day that the dreaded 'T' word...transplant... was mentioned as a possibility :-(

No joy with the bottle feeding today - her drip feeds were reduced from continuous to 2 hourly intervals in an attempt to make her a bit hungry. She doesn't seem to know how to suck. They are going to keep trying but the speech therapist may have to get involved to help with this.

We now know it's very unlikely that Ffion will be coming home until the definitive operation is done so we're looking at several weeks. We'll know a bit more of a concrete plan on Monday, so the blog will go a little bit quieter until then, and probably after. We're going to take Fraser in to see her tomorrow and one of us will try and get in most days for a cuddle. We are taking time now to work out how we deal with this on a practical level with as little disruption to Fraser as possible.

Thank you for all your prayers and support. I realise I don't sound very positive today but we're bound to have good days and bad along this journey and not being able to take my little girl home for ages has made me feel quite low. A weekend with Fraser will help though and she's absolutely in the best hands - thank you God.

A Wednesday Evening Update from Sally

Hi everyone, Thank you to everyone who is following Ffion's progress - I have been to see her today and had a cuddle which was really lovely :-) On the good news front she is out of the incubator, her jaundice seems a lot better and they've stopped monitoring her heart with the ECG trace as they are happy she is stable and regulating her body temperature ok.

 

On the kidney front, her creatinine levels haven't dropped at all, but it's still early days. Maybe we had our hopes up too soon that we would see a difference. Her nephrostomy operation has meant she has a tube through her side into her kidney and she is due to have a scan tomorrow where they put some dye down to see if there is a blockage, and if so, where it is. Although we thought there was definitely a blockage, the doctors haven't ruled out the possibility that there's no blockage and the kidney is just a bit duff (for want of a better word!!) We are really hoping that there is a blockage, because that means it can be removed with surgery and we can see some improvement. If the kidney is just malformed we stuck with it as it is, and the longer term will not look so bright.

 

We also discovered today that she has a hole in the heart (ventricular septal defect and pulmonary stenosis), but thankfully this is a pin-prick hole and will just need monitoring not intervention (phew!)

 

We are hoping now for some progress in her feeding. At the moment she is being fed down a tube through her nose into her stomach because they need to be strict about how much she's getting so they can measure everything. We are beginning to offer her a bottle feed but understandably she's not bothered. The hope is that she doesn't lose her sucking reflex, although she has no idea what her mouth is for just now as she's never had a proper feed yet. Again it's early days, but the feeding issue is another that's taken into account when they decide when she can come home.

 

Once again thank you everyone for your thoughts and prayers. The results of tomorrow's scan will be important for us in terms of knowing what's happening.

 

Kenny was listening to one of Fraser's CDs in the car yesterday and an old children's song came on that many of you will remember from school - 'He's got the whole world in his hand'. We've been singing the verse 'He's got the tiny little baby in his hand' quite a lot... :-)))

Wednesday Morning

We are pleased to start Wednesday with some good news.....Ffion is now out of her incubator!

We are now waiting for news re any blood tests and also confirmation of when the kidney dye test will be.

Tuesday

Ffion has remained stable today. There has been no real drop in her creatinine levels but it is still early days. Please keep praying.

On a positive note Sally and Fraser had a great day together!

Just a quick update to say that Ffion came through the operation successfully and is now back on the ward. The Urologist says the procedure went smoothly, however, it will take a couple of days to see what difference it makes. Please keep praying.
 

Monday Lunchtime

Ffion was stable again overnight and had another ultrasound this morning, although she is proving fiddly to check as she is so small! She was also able to have a bottle feed of special formula.

The doctors have had a case conference about Ffion and it looks likely that she will have surgery this afternoon. She is back on fluids and having more blood tests. We are just waiting for another ultrasound scan but she is the next neo natal case on the surgery list, so the operation will probably take place in a couple of hours time.

Please pray for Ffion and for the doctors and nurses who are looking after her. Pray especially for Kenny and Sally at this difficult time and remember little Fraser who is having fun with Grandma but naturally finding everything a little strange.

An Update from Sally

Firstly a HUGE thank you to everybody who's been supporting and praying for us over the last few days. It means the world to us. I will try not to be too medical in this blog but still  keep you all updated!

Ffion was born on Thursday 7th, four weeks earlier than expected. We knew from the antenatal scans that she had kidney problems. Her left kidney is poly cystic and will never work. Her right kidney is swollen, due to being blocked, and its ability to work is unknown. She was transferred to the neo-natal unit on Thursday evening for tests and because she was having issues staying warm, due to being premature.

Initial tests revealed her creatinine levels (a waste product the kidneys get rid of) were extremely high and her potassium levels were also elevated. An ultrasound scan was done which confirmed the antenatal findings and the need for a nephrostomy (an operation to place a drain in the kidney and relieve the fluid and look to see exactly where the obstruction is). It also confirmed she would need this operation done very quickly if the levels continued to rise. Cover for this procedure was limited at Cardiff over the weekend, so we were transferred to Bristol Children's Hospital on Friday night. 

At Bristol....

Ffion was taken off formula and just put on glucose and fluid through her drip. The ultrasound scan was repeated and also a dye injected through her catheter to try to locate the blockage. These confirmed the need for the nephrostomy on the right hand side. However, repeated blood tests showed she was stable and the decision was made to transfer her back to Cardiff for the surgery to prevent a long stay in Bristol.

Thank you to all those of you were praying for her as her stabilisation. This has made an enormous difference from the point of view of her health and the transfer back to Cardiff makes a huge difference to us practically.

Ffion is now settled in Heulwen Ward in the Children's Hospital, UHW.

I will continue to update this as we are likely to have the nephrostomy done today or tomorrow. If the nephrostomy is successful and all the fluid levels begin to look normal again her future looks bright. If not, we are looking at long-term kidney treatment.

As many of you know Ffion's entrance into the world hasn't been straightforward and this blog is an attempt to keep people updated. We will fill in the details of the last few days soon. Ffion has some renal problems (kidney/bladder) and on Friday we were transferred up to Bristol Children's hospital. However, the good news today is that we are being transferred back down to Cardiff. We are looking forward to being closer to home and to Fraser.

Despite her medical problems Ffion is absolutely gorgeous and we are enjoying cuddling her (despite all the wires and tubes!)!

Ffion Harrison

Born on Thursday 7th July 2011

at 1.20am

Weighing 2.57 Kg (5 lb 10 oz)