Jacob and Maddie's Story Final Part

You can find part one HERE

Part 2 HERE
Part 3 HERE
Part 4 HERE
Part 5 HERE

Five am. Things were progressively worse. The doctors decided that the ventilator wasn't working and that she needed to go back onto the other one. The same apprehension went through my body. Not again! That ventilator was our last hope. What now?
 When the ventilator was swapped back Maddie's oxygen levels began to rise. They continued to rise until they got to 85.% Generally not a good level, but for her, at that moment...it was wonderful!!! The doctors assumed that the oscellating ventilator must have shaken some mucus plugs out of her tiny lungs, enough for them to be working a little better.

The doctors were so excited. Raymond and I were in raptures. I guess the relief was so overpowering. I began to think she was going to make it.

It was still touch and go for a long time. She had fluid throughout her body...her organs were failing...the sepsis was still present. But as the days went by, she got better and better. The drugs became less and less. It was so relieviving when the paralysing drugs were stopped. That meant she could open her eyes. The first time she groggily opened her eyes and looked at me face it felt like my heart literally soared. The ventilator was stopped...and ...she coped! Her lungs were still quite consolidated with mucus, and she had air pockets in the lining of her lungs from the continual pressure of the ventilators, but that should heal with time.

Jacob, Maddie my husband and I spent just over a week in the isolation ward( as rsv is contagious). It was so exciting to have them back together again. They both had a photo of the other on the side of their crib the whole time, a little thing I thought might help them feel as though they were with the other. but they were really back together now. Maddie still had rapid breathing and a very fast heart rate, but the doctors said that was part of their recovery. She was slowly weaned off oxygen too. This was a huge relief, as we were told she would probably go home needing it. I was extremely wary of the monitors coming off her as these were my assurance that things were ok. I coped without them, but more importantly Maddie coped.

On July 26th, my birthday,  2001, I took my babies home. I don't recall sleeping much of those first few weeks home. My body was used to only resting  over the last 4 weeks anyway. I vigilantly sat, stood or rested beside them every night...I think I ate. But I coped. I can't believe it, but I did!

I am so proud of Jacob and Maddie. They went through so much. How such tiny little bodies fought against such an immense illness is beyond me. Even one doctor told us to go and buy a lottery ticket...you see every year the children's hospital loses a baby or two from rsv...and our babies were it that year!!! But they made it, and we already knew we had won the lottery!

I have such hopes and dreams for them. They were obviously meant to be here for a reason. But, mostly I am thankful. That they are here. I don't know what the future will hold for them Some brain damage could have occurred. Their lungs may never be the same. But you know what???My babies defied everything that should have happened. I have faith they will be ok. Oh...I now have a great photo of all my kids in our entry....one af all of them...my precious miracles..

So,,,this story was written about 9 years ago, and we know now that some damage occured to the twins...They both have reactive airways and get very sick whenevr they have a virus, Maddie nearly drowns in mucus at night when she is ill, and they both have around ten weeks each year off school because of their lungs. Maddie has hearing loss from the low oxygen, which killed some of the nerve endings in her ears, so she wears hearing aids, she needed occupational thearapy and physio therapy, she was late to do many milestones and still suffers with receptive and expressive language, but she is getting better...and guess what..SHE IS AVERAGE...do you know how exciting that is, compared to what could have been!!!

Jacob is home schooled because of how quickly he stops breathing, his title is acute, life threatening spasmodic croup..like an  anaphylactic response to viruses...life is tough yeah, but I tell you what...I'd rather be visiting doctors and specialists, than visiting their graves...


So, there it is...if you have followed my story to here..I thankyou from the bottom of my heart.....

until next time

hug your babies, even though they may be gigantic now

lots of it

Mandy

xxx