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.
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