Princess Poppy's 2nd Eye Operation

On the 30th May 2014 Poppy went back to King's college hospital for her second operation.  As you will know if you have followed our story from the start, her first operation was when she was six weeks old to remove the cataract that she was born with in her left eye and also to have the artificial lense (intra-ocular lense or IOL as it is often referred to as) fitted.  Since then she has had two issues with her eye: it started to turn in and scar tissue (sometimes referred to as a "secondary cataract" as this scar tissue can occlude the visual field if severe enough) began to grow.  In the last 12 months the scar tissue has not become any worse.  It does, however, occlude a large part of the vision in her eye and leaves her with a gap at the top left of her pupil that is not covered.  The ophthalmologist has for now said that as it is not totally occluding the visual field then they will delay surgery to clear it for as long as possible.  I understand the reasoning behind this as you have to weigh up the pros and cons.  As soon as it is cleared more scar tissue could just form again and so the doctor wants to minimise the amount of surgeries as there are risks associated with general anaesthetics.  Anyway, it was discussed at the beginning of the year that what was needed next was surgery to correct the severe squint that Poppy had developed since her cataract surgery. 

So on Friday 30th May we travelled down to London with Grandpa for her eye muscle surgery.  We had to be there for 7.30am so it was an early start!  Poppy was not allowed to eat anything past 2.30am so I gave her a snack before going to bed at 8pm.  She was then allowed water up until 6.30am.  I was really dreading this part, not being able to give her any breakfast.  Anyway, it turned out we were second on the surgery list that day, which meant that she didn't get to go in until 11am.  For the first few few hours she was brilliant.  She sat in the bed in her gown playing with all the toys that I had packed in a bag to keep her amused.  She kept getting off the bed and having a little walk or dance around.  There was a little girl of a similar age in the bed opposite and they both amused eachother for a short while, both sitting in their buggies and babbling to one another.  By about 10am Poppy was starting to get impatient.  She was obviously hungry and thirsty and kept asking me for milk.  It did start to get a bit stressful at this point, this was one of the things I had been dreading as I'd really hoped we would be first on the list.  The little girl that went before us must have been a couple of months younger than Poppy and the list is done youngest first so that was just the way it was.  So at 11am I walked through the theatre to be with her while she was put under the anaesthetic.  There were two male doctors there and they asked me to sit her on my lap and get ready for a struggle, saying that sometimes it takes three people to hold a child down.  I felt horrified at this, it must be so difficult to do that as a parent.  Poppy, however, did not put up a fight at all.  I think she was tired from the amount of time we had been waiting and I sat her on my lap, holding her tight and kissing her head, reassuring her saying, "Mummy is here, it's okay", over and over again.  The doctor put a mask over her mouth and within seconds her limbs had gone limp.  I gave her one last big hug and said I would see her again very soon and lay her down on the bed.  She looked peaceful like she was just sleeping.  I gave her a kiss and left the room.  The fact that she didn't fight it I think made the while process easier for me. 

The operation took around an hour and a half.  I was convinced I could hear her crying and screaming as she was in recovery.  I just wanted to run in to her but knew I couldn't and figured they would bring her out very soon.  It all went quiet and then it seemed like a long time until eventually she was brought out.  A nurse was carrying her and she put her in my arms.  This moment was an immense relief.  Her eye was totally blood shot and she had a little blood and graze around her lip from the tube, but she was back and she was going to be okay.  I am still nursing her and so of course she just wanted to latch on.  She was extremely sleepy and would have just stayed latched on in a half sleeping state all afternoon if she'd have had her way!  I was aware though of the fact that the nurses wanted to see her eat and drink something and have a wee in her nappy before they would discharge us.  I was also aware of the fact that we had a car journey of around 3 hours (depending on traffic) so I couldn't let her lie there all afternoon.  I sat her up on the floor while I got her change bag out.  She was so sleepy she was closing her eyes while sitting up!  I changed her nappy and got her out of the gown and back into her clothes.  I tried giving her sips of water but she didn't want any.  She did decide though that she would like some flapjack and had half a carton of juice, so after just around an hour and a half  the nurses were happy with her and we were discharged armed with eye drops and ointment to apply 4 times a day for 4 weeks (plus liquid paracetamol to give every 4 hours)  She slept on the journey home, in between waking up to eat a cream cheese sandwich!  We got home around 6pm and were greeted by Daddy and her siblings who were all very pleased to her!  I was surprised that there was no shield or dressing put on the eye and it was quite difficult to look at it to begin with as there was a lot of blood but it was obvious straight away that it looked so much better, it looked almost completely straight.  We are realistic and we realise that because of the nature of Poppy's eye condition it is most likely that the eye will start to wander again as it is so weak in comparison to the stronger eye, and so this operation may need to be repeated a few times in the future. 

It is two weeks on now since the operation.  There is a little bit of blood around the corners of the eye but it is looking a lot better now.  We gave her the liquid paracetamol for three days post op and after that we didn't feel she needed it.  The morning after the operation she sat up in bed and said, "hurt" and pointed to her eye.  That was the first time she had said that word.  I felt proud about how her vocab is expanding at such a rapid rate but I wish she hadn't have had to go through that to learn that word my poor baby!  So when she stopped saying hurt or crying for no particular reason we figured the pain must have subsided.  We are still going with the eye drops though, 4 times a day.  It was more difficult to begin with than it had been when she younger as she fights it more!  However, the other day instead of forcing her eyelids apart I said to her, "open your eye" and she opened her eye and I just used my fingers to keep it open as I popped the drop in, and so that is how we do it now.  We hadn't used the ointment before so that seemed strange to begin with to put that on the bottom eye lid but I think that is actually easier as you just have to pull the lower eyelid down and at least the ointment stays there instead of dripping out like the drops do!

We gave her a week off patching while her eye was recovering.  We have started back this week and I was a little disappointed that it has not seemed to really help with the battle that we have with her keeping the patch on!  The thing is she still has the scar tissue so the vision is still limited whether the eye is straight or not.  The first few days back at patching were tough.  We didn't make it past 2 hours and she seemed to be tolerating it even less than before the operation.  I think it was the fact she had had the time-off and so we had got out of the routine.  I had days where I said to my husband that I was going to tell the doctor we're giving up with patching because it is just too stressful!  But then I keep reminding myself of how the doctor told me the single most effective thing that can be done to help that eye is to patch!  And then I read success stories on my Facebook cataract support groups and I know that patching works so the stress has to be worth it.  I have to remind myself to just take each day as it comes...if we have a bad day forget about it...try to have a better day tomorrow and most importantly, never give up.

In two days time Poppy and I are making another trip down to London for her follow-up appointment.  We are hoping that the doctor will be happy with her progress so far, so will keep you updated!  Will finish with some photos of Poppy over the last month before her operation, on the day of the operation and after the operation:

PRE-OP:

 

 

OPERATION DAY:

 

 

 

 

POST-OP:

  

 

 

 

Another trip to London

       This week we had our appointment at Kings College.  Poppy was an absolute star and sat still (most of the time!) when the doctors needed to examine her!  They concluded that the scar tissue/opacification at the back of the eye that we believed was border line needing surgery was in fact not that bad.  The doctor said that he could see a good red reflex and so no treatment would be needed on that at the moment - great news, if a little confusing!  He did however say that he wanted her to have surgery to correct the turn soon.  It is getting worse and while I dread further surgery I am also quite eager for her to have it done as it should really help that eye develop better vision.  I feel that at the moment the only time it is really working is when she is patched - which is only 3-4 hours a day.  So the doctor said he would write to our local hospital and see if the surgery can be done there and if not then we will go back to London.  I have since had time to think and discuss with DH and we have come to the conclusion that going back to London has got to be the best thing to do.  we trust the doctors there, we know they have the experience and expertise. So I have been on the phone chasing them about this, eventually having to leave an e-mail that they will hopefully respond to on Monday.  Aside form that Poppy is doing great. She is growing in confidence with her walking every day now and her speech is coming along.  When I put her shoes and coat on before we go out she starts saying, "Bye" over and over, so cute!  The patching is still a daily struggle for us all.  We still have to use the arm splints or she will just pull the patch off.  She has got wise to this now though and is managing to slip the arm splints off, then the patch and leave them hidden in a corner of a room (along with her glasses) while she goes on her merry way playing with toys!  It is frustrating and upsetting and it is so easy to want to give up with the patches...but we know just how much good they are doing her eye...we have no choice but to soldier on.

These are a few pictures taken over the last six months:

This picture shows what we used to do before we got the arm splints - we tied her sleeves or put on scratch mitts or socks.  This worked okay for a while but she struggled to crawl or pick any toys up so she got very frustrated with it quite quickly.  So far the arm splints have been what has worked best for us as she is still able to crawl/walk, pick up toys with them on.  The only thing she cannot do is get anything in her mouth so we take them off for breakfast and lunch and just have to sit and watch her constantly!

Her first pair of shoes!

Her third pair of glasses - age 13 months

 

13 months old

Halloween 2013

Getting more mobile!

  With her big sister

 

Age 14 months, when we got the arm splints!

 

Supporting Children In Need - November 2103

 

Poppy wearing her prescription sunglasses - helps her eye on a bright day

 

With big sis again...love this one!

 

 November 2013 - Trip to London and play date with her friend who was also born with a cataract.

 

 

Wearing her build-a-bear glasses!

 Poppy the elf!

 

 

 

 

 

 

 

 

 

 Christmas 2013

 

 

Looking at her patches...a good one to end the post on!

A 1st Birthday...a 2nd Christmas...lots of patch-pulling!

Poppy is now 15 months old.  Since we last blogged she has grown so much!  She has had her first birthday and this week she has started to take her first few steps unaided!  I am so proud of her that she doesn't let her eye get in the way of what she wants to do.  She is very determined and strong-willed, I see that in her already.  She will shake her head in her high-chair when she has had enough to eat and say, "No no no no no no no..." over and over again, much to the amusement of the others who all laugh.  She loves saying, "Jay jay" and crawls around the house (or should I say walks on her knees which is her favourite mode of movement at the moment) looking for him, he is obviously her favourite!  We have had a lovely family Christmas - Poppy's second Christmas!  Although she is still so little still she has really enjoyed Christmas this year.  She was a bit dazed and confused on Christmas day morning being sat down in the lounge surrounded by presents, but she loved the Christmas tree, particularly the baubles and the chocolate treats!

Since she was 10 months old we have been battling with the patching every day!  In the early days she used to cry and then fall asleep as soon as the patch was put on.  Being told to patch for half her waking hours therefore meant that it had to be on pretty much all day as she slept so long.  It was very disheartening but as she got older she slept less and it started to get a little better.  But then she got aware of the patch and started pulling it off as soon as it was put on!  We had to resort to putting scratch mitts on and taping them on with microporous tape to stop her pulling the patch.  It was heart breaking to do that to her every morning and she struggled to crawl or pick up toys, it was so difficult.  We saw her consultant, Mr Chan, in the summer. Her pressure in the eye was fine, but the turn had got a little worse and the opacification had also worsened slightly.  We were told to continue with the dilating drops to help clear the visual axis and buy a little more time, but Mr Chan said to be prepared for further surgery to get rid of the opacification soon. 

We were still really struggling with the patching over the summer and decided to get arm splints.  I had seen pictures of other children on the facebook groups using them.  I remember when I first saw them I thought they looked so cruel and people do often make sympathetic comments when they see her wearing them.  But the thing is when you have to live on a daily basis of waking up, putting in her eye drop when I wash and change her and then putting on the patch, when you have to do this EVERY DAY and every day it is a constant battle of her trying to pull the patch off, then you will try anything.  The arm splints may seem cruel but she is actually not that bothered by them most of the time.  She is still able to crawl and pick up toys, the only thing she cannot do is get anything to her mouth so they have to come off at meal times (so normally the patch comes off then!).  The bottom line is that if we do not patch then she will not have a functioning eye...and that is why we do what we do every day.

After the summer we found out that Mr Chan was going on sabbatical for six months and so our next hospital appointment in October was with a locum consultant.  He did not instil much confidence in us, giving us different answers to things and totally confusing and unnerving me.  He suggested a EUA (examination under anaesthetic) as he said he couldn't get a good look at her eye while she was awake and said that he could check the pressure then too.  I said that Mr Chan was able to check her eye and the pressure while she was awake and he also emphasised minimising as many general anaesthetics as possible.  So I said that I was not happy about the suggestion of a EUA and asked to get referred back to Kings College hospital where we she had her original surgery.  I feel that the locum consultant at our local hospital does not deal with infants with congenital cataracts on an every-day basis.  It is after all not a common eye condition and so my gut feeling was that it is better to get her seen by specialists that deal with these issues every day, specialists in London.  We finally have a date to be seen at Kings College in a weeks time.  I am very nervous at the prospect of more surgery, but Poppy comes first.  I will do anything and everything in my power to ensure she gets the best treatment and care for her eye.

                                                                                                                                                                                                                                                                                                                                                                                      

 

 

 

 

8 Months old

Poppy First Pair of Glasses

Last week we went to the opticians and picked up Poppy's very first pair of glasses.  She is just 4 months old and even the smallest ones they had are a little too big at the moment.  So she is now wearing her glasses all waking hours and we are patching for a few hours each day.  I am pleased with the glasses as it seems her vision is a bit better in them (that is when they are not slipping off and she ends up chewing them!).  However, the patching is not getting any easier.  We have been patching since before Christmas although I was not very strict about it to begin with and we had days where we didn't do it.  Since our last visit to the opthalmologist though we have been doing it every day for a good few hours.  The optometrist and opthalmologist both highlighted the importance of patching and since joining a facebook group I have learnt from other parents just how much difference to vision patching can make in the long-term.  It is very difficult though and within half an hour of applying the patch Poppy is not happy and will start crying.  I have tried to eliminate all other reasons as to why she could be crying - feed her, let her sleep if she is tired etc. but it is very obvious that it is done to the patch: as soon as it is taken off she stops crying.  I know we just have to persevere though.  I am concerned that the scar tissue that grows on the back of the eye commonly after a cataract operation is the reason why she is tolerating the patch less and less.  I think it is getting worse and I know that she will have to have surgery to remove this soon.  I am dreading having to go to hospital with her again and going through the whole nil-by-mouth and general anaesthetic scenario again, but really we need to do it sooner rather than later for the sake of her sight.  Anyway, one positive at the moment is finding two really great Facebook groups: one for parents of children that wear glasses and one for congenital cataracts.  It has already proved to be a great support network for us.  There are parents from all over the world on there going through the same thing and it is great to be able to share experiences and advice. 

I will leave you with some pictures of Poppy over the last two weeks with her new glasses, patch and siblings: