Wednesday 20 April 2011

Intense or just Intensive Care?

I don’t know if you have ever been into a Paediatric Intensive care before but it is so surreal. Every bed, or cot has its own individual nurse caring for the patient. When we arrived to see Georgia she had already been taken off her ventilator and her sedation lightened so she was a bit more lucid. It was really shocking to see all the wires she had and the huge monitors recording all her vital signs, the most shocking thing was that they had just removed the dressing from her tummy wound and although it was very neat I was beside myself that they had already cut into my baby. I thought the poor thing would end up looking like a patchwork doll!
We didn’t stay very long, I know you shouldn’t care how you feel, just how your child feels but intensive care does what it says on the tin, it’s intense! I also felt really guilty still for not having been there when she woke up and although I probably wasn’t being, I felt like I was being judged. Funny really, since I have spoken to so many parents that were in the same position and they felt the same. I am also guilty of judging people before I knew the whole story.
I cried as we left, it’s like there is this invisible elastic band that is tied to you, trying to pull you back.
It’s difficult having a baby and all the emotions you feel afterwards, even without them being ill. There were days when I really could have done with having a rest but the guilt I felt for not being with her when she went for surgery made me get on that boat over to her every day.
The next day she was transferred back to E1, this time she was put on one of their wards rather than a room. The wards are split into 3, there is the High Dependency ward which is for children just back from surgery, then opposite that is the Nursery which is for babies that still need a bit of monitoring then they have their Day Ward for the older children that do not need constant supervision. I later found out that the separate rooms are usually used for teens for privacy.
I cant say enough how wonderful this ward is, by the end of Georgia’s stay it felt like home to me and in fact even when I go back now it still feels like home. The nursing staff and the doctors all work so hard night and day, I found myself trying to help them as much as I could as they are totally overworked but after a 12 hour shift they can still smile and make the children happy, what a wonderful gift to have!
Georgia was moved to the High Dependency ward on her return from Intensive Care. They started her feeding again through a feeding tube as she got to tired with a bottle. Another thing this heart defect took from us was the bonding of breast feeding as by the time she was ready to eat again my milk had all dried up no matter how much I tried to express. I would have another baby just for the breast feeding experience again. When my husband reads this he will probably faint! He thinks 2 is more than enough!
They had decided to put Georgia on a super milk called Infatrini which is double the calories of normal milk. She was also started on her medication, Captopril for blood pressure, Furosemide for water retention and Spironolactone , another diuretic for water retention.
Its bizarre but when you have been away from home and something massive has happened in your life you expect it to be different, like it should reflect what you have been through. Our house was just so empty, Josh had gone up to Kent to stay with my mum so it was horrible going home. You may think ‘well why not stay at the hospital then?’, reason being although the staff go out of their way to make you comfortable, its still stressful and emotionally and physically exhausting. Everyone deserves a break. Going home was not really a break though, it just highlighted that we didn’t have our babies there.
Georgia was in hospital a lot longer than we anticipated so rob had to take a bit of time off work once both my mum and robs mum had used up their holiday, his boss was really understanding and allowed him as much time as we needed.
The good thing about Rob is nothing usually can give away how he is really feeling, he will try and make it funny to break the desperation you often feel. I think the only 2 times I had witnessed him cry was when Josh was born and then when Georgia was diagnosed.
So you see, my wonderful, strong, funny, often downright rude husband has been the best support I could have possibly ever had, he keeps me grounded, makes me laugh and although sometimes I could throttle him (especially when he has left trails of food everywhere) I couldn’t live without him.
 

Wednesday 13 April 2011

Would we ever have expected this?

The relief we felt having her where she needed to be was short lived.
On the 8th day after she was born she started vomiting, which up until this point was rare for Georgia. The nurse that was caring for her was a little concerned but she said that it was quite normal for heart babies to have trouble digesting their food, so we were not hugely worried.
The next day my husband and I travelled over from the island to see her, she was a very pale grey colour and very clammy. This tiny little being in a massive cot. The nurse informed us that she was not keeping down any food and was vomiting a green substance, she believed it may be a problem with her bowel as it is quite common with children that have Situs Inversus Totalis. I just knew. We had to return home so Rob could go to work before they had a chance to scan her to find out what was wrong. I know it sounds ridiculous that we had to leave but we had a mortgage and I had been made redundant when I was pregnant so Rob’s job was our only income.
 As we were travelling back on the ferry I just sat and watched Southampton get further and further away through my tears, and I knew, I just knew she was terribly ill but there was nothing I could do about it. If there ever was a time I wanted to switch places with her it was then. Rob and I sat in complete silence until we were home and put on a brave face for Josh.
We had been home for under an hour when I received a call from one of the registrars at the hospital. She told me that they had scanned Georgia and found a twist in her bowel and that they had to do surgery immediately otherwise she would die. They couldn’t wait until we returned to the hospital, they were already prepping her for surgery. I had to give my consent for the surgery to go ahead and was told that the risks of death were very low with this procedure but it was pretty much a certainty she would have to have a colostomy bag for the rest of her life. As soon as I hung up I couldn’t breathe, I had trouble saying it to Rob and my mum, I was trying so hard to not let on to Josh that anything was wrong.
Rob has had so much happen to him in his life so he manages to deal with these things a lot better than I do, I mean he is not heartless its just his coping mechanism is so much better than mine as it's had to be.
We had to just get on with it as there was nothing we could do and I was ok right up until Josh went to bed then I couldn’t take my mind off it. Honestly I was just waiting for the call to tell me she hadn’t made it. Every time I saw a car drive past our house my stomach jolted as I stupidly thought they might send someone to tell us she was gone. My mind just whirled round and round. I was mainly thinking that if she didn’t make it then I didn’t want them to keep her alive until we got there, they needed to just let her go.
The call came 7 hours later to tell us that she was a lucky little fighter and that her bowel had untwisted on its own before they could get to it. They removed her appendix too just to save any confusion in the future (as all her internal organs are the wrong way round). So she didn’t need a colostomy bag either. Up until that moment I hadn’t considered how bad it would have been to deal with that as I was all consumed with her survival. As Rob said later, she has a lot of angels up there watching out for her.

She had been moved to Intensive Care now and she was on a ventilator until she was healed a bit, yet another hurdle for the poor little mite. Because Georgia had heart troubles and breathing problems it would have been very easy for her to become reliant on the ventilator as it gave her body a rest.
On the journey we have been through up to date none of it, not even her heart surgery, were as hard to deal with as this first surgery. I know it sounds silly as it was only a bowel operation but we hadn’t prepared ourselves for it. Perhaps it set us up for the surgery to come so we knew what to expect? I don’t know, but what I do know is I will never forgive myself for not being there with her.
Did you know that Georgia has the most beautiful eyes? They are so expressive. She can make you feel happy and sad all at the same time just by looking into them. When she got really ill I would just sit at her bedside while she just lay there staring at me from under her beautiful long lashes. Those eyes have made me feel guilt for the ‘bowel surgery day’ everyday since.
One day I will forgive myself, but hey lets face it parenting is just one big guilt trip!  

Tuesday 12 April 2011

Is it still difficult?

Its coming up to the year anniversary of Georgia's heart surgery and I still find myself panicking about every little change in her.
I wish I had kept a blog from the moment she was diagnosed really, so that you all could have been on the journey with us, I think there would have been massive gaps in it though as sometimes exhaustion got the better of me and I couldn't function let alone type!
As much as we adore Georgia it has been the longest 2 years of our lives and I do kind of miss normality sometimes, but then this is our normal now.  Medications, Hospital appointments, watching her being poked and prodded, the constant colds and breathing problems.  She has been through so much but still manages to smile and is a little ray of sunshine to everyone she meets!
When she was diagnosed with AVSD and Situs Inversus Totalis I was 21 weeks pregnant and was told it was quite likely I would miscarry or she would die at birth, luckily she escaped both of those.  She was nothing like I expected at all, the main thing with heart babies is they don't look ill until they are really in trouble so when she was born all pink and beautiful I was under the impression they may have made a mistake.  They handed her back to me after the doctor had a little look at her and it felt normal, she was just a normal baby! She stayed with me for 3 hours until her breathing got bad.  Thinking back on it now I can understand why she seemed so well, the labour was easy and trouble free, therefore I guess she had no stress on her heart at that point but after a few hours of breast feeding she was getting tired and her lungs were affected as she couldn't clear them, she was all snuffles, little did I know that's how she will be for the rest of her life.
St Marys NICU were wonderful and very supportive when we didn't really have a clue what was going on, its very strange staying on a maternity ward with no baby next to you but we were allowed in to her whenever we liked.  Unfortunately being a small unit they didn't have the equipment to deal with a special case such as Georgia's so they were constantly on the phone to Southampton Cardiac ward to try and get her transferred.  That's a difficult thing for Southampton too, knowing there is a baby that needs attention but knowing that because of MRSA they needed a spare room for her to go into until they could rule it out as she was coming from another hospital. 
At 7 days old Georgia was moved to Southampton, my husband and I couldn't go in the ambulance with her so we got the ferry over and drove to the hospital after she had been admitted.  I remember how scared I was looking up at this huge hospital and thinking that she was all alone in there, it makes my stomach turn just think about the times I had to walk out of the doors leaving her there but the whole time my entire being just wanted to turn around and stay with her.  Completely tore me apart every day.
The Ocean Ward or E1 as its better known as, is absolutely amazing.  At St Marys she had this tiny little sats monitor on her foot (sats are the oxygen level in the blood), when we walked in to her room on E1 she was wired up to a huge monitor that was giving a constant ECG, recording her sats and her heart rhythm.  She also had a sleep apnea monitor on and was having a heart echo done.  All this was going on at 7pm!!!! Crazy!
So this is what happened in the first few days! Can you imagine all the thoughts and feelings you have?  I cant even describe the fear I felt but also the joy at her being where she needed to be.  Whilst all this is happening we still have Joshua at home staying with Nanny, I think the longest I went without seeing him was 2 weeks and that was only because I couldn't afford the petrol to get there!  I missed him everyday, but josh being josh really didn't notice anything out of place, he is such a well settled child that we were lucky he was really happy when he saw us but knew we would have to go again.  I will end this post for today with a story that not many people know, its a common misconception! We named her Georgia Louise Penny, Josh couldn't grasp that so called her wheeze (Louise), its very fitting and really suits her, most people think its a name that came about from her constant breathing probs and cough, but no........Joshua was right from the start! Perhaps he should become a doctor.