Tough times

I don't want this on my finger!

It's been a really emotional 24 hours. Yesterday another couple from our Down Syndrome family lost their beautiful 10 month old daughter. She had been in hospital for a long time, and was finally well enough to go home. Her Mum and Dad were a little bit worried about her when they got home so they cuddled with her through the night, holding her hand and loving her. In the morning, they took her to hospital where it appeared that she had stabilised. Sadly, though, her little body was just too tired and she took her last breath at about 11.45am. Although it was very peaceful, it was sudden and unexpected. All of us who had come to love this gorgeous little girl with the huge eyes, felt shattered. Our hearts are broken for her Mum and Dad who adored her. Rest in peace precious girl x x x

I cried most of yesterday. The tears just wouldn't stop. I cried for her and her parents; and I cried with thankfulness for Felix's life. There has been more than one occasion when we were told that Felix may not survive. It's times like this that I'm reminded just how lucky we are that we have him to love and to watch him grow. At the same time, I have an ache in my chest when I think of the pain these parents are going through right now. Instead of planning for her first birthday in a couple of months, they are planning her funeral. This never gets any easier.

Just chillin in his cot in HDU

Late last night (approx 10.45pm) I could hear Felix making a strange noise through the baby monitor in our room. I decided to go and check on him. He was asleep, but there was something funny about his breathing which worried me a bit. I went back into our room to tell Nathan to prepare for an unsettled night. Within minutes, Felix started to cough. I ran into his room to find him gasping for breath in between barking like a seal. I recognised the cough sound as croup, which he has had before, but I've never seen any of our kids gasp for air like that. With every breath out, it was getting harder and harder for him to take a breath in.

I'm not a panicky person; in fact I probably leave things a little bit too long when it comes to the kids being sick. Last night was different....the look in Felix's eyes really scared me. I could tell he was really struggling. I yelled at Nathan to get us to the hospital as quickly as he could. We bundled Felix in the car and rushed down there. They got us in quickly and put him straight on a nebuliser and gave him some Prednisolone. It didn't take long before he settled down significantly. They gave him three nebulisers and by the time they were finished the coughing had almost completely eased, but he was still really gurgly and sounded horrible.

They admitted Felix into hospital to keep an eye on him overnight, so at 2.30am in the morning, we moved up to the High Dependency Unit (They didn't want him on the Paediatric Ward in case he caught something else). Nathan stayed with him while I went home to pack a bag for them. None of us got much sleep. Nathan said that Felix slept for about 20 minutes. They think the Prednisolone might have hyped him up a bit. I tried to sleep at home, but was too worried so I headed back up to the hospital just after 6am.

Nebuliser before bed tonight

When the Doctor came to see him in the morning, he asked if we wanted him to stay for one more night for observation, but we really wanted him home so he could get some sleep. They gave us the medication he needed and we all came home and slept for a couple of hours. It's now 9.30pm. Felix has been in bed since 7pm after he had a nebuliser and his medicine. He has the vaporiser steaming his room, but I have just heard him start coughing again. I'm really hoping that he will stay settled and get some much needed rest.

We have had a tiny taste of what some of our friends go through with their children on a daily basis. I've lost count of the number of little ones with Down Syndrome who are enduring long hospital stays due to a variety of different health issues; and remembering the tiny ones who have already lost their lives this year. It really puts things in perspective and makes me so thankful that Felix is usually so well. A reminder to count my blessings every day!