Sunday, May 24, 2009

Part 4....Jacob and Maddies Story

So much happened those first 5 days of the babies being on life support. It went by in a tired sleepless blur, that felt surreal. On day 6 in the ICU the doctors thought Jacob might be ready for his ventilator to be taken off. (extubated). They don't like people being on them for too long, as it becomes harder to take them off. As soon as the breathing tube was taken out I noticed that he was really struggling to breathe. He had a deep recession in his chest with every breath, and a strange sound coming from his throat. The nurses told me that this was quite common and it was caused by sweeling in the throat from the ventilaror tube. His respiritory distress increased as the day went on. The doctors decdided to re-tube him He needed life support was in a very bad way. They advised me not to be present during the procedure as it might be destressing to see. There was no way I was going to leave my baby. He needed me. He wasn't going to be alone during this.

" I want to be here for him."

I move back to give them room. It will be difficult because he is so tiny, and he has the swelling as well.

"I can't get it in. Quick...get a smaller tube. I CAN"T GET IT IN"

The doctors and nurses are calmly frantic. They are working around him Something is so wrong. I know it. He was moved yesterday to this room. I heard a mother scream and cry and weep half the night as she lost her little one to heart failure. I didn't want Jacob moved to this room...away from Maddie...all by THIS room. I walk to Maddie's room and walk in crazy circles.

"He's going to die. He's going to die." I nurse asks me what's wrong. I nearly vomit.I can't answer her. I rush back to Jacob's room. I can't see him. There are too many people around him. It's so crowded. I'm going to burst with fear. I can't breathe. they still can't get the tube in. They rush the crash cart into his room. He's stopped breathing. He's getting heart massage. My GOD...he's dead. I still can't see him. I see the doctor moving his body t keep Jacob's heart beating. I want to push them all out of the way and at the same time I want to run away from it. I do want to see him. They are all still blocking my view. He's my baby damn it! I try to see around them. I can't.

Raymond...where are you....I want you here...I need you here... I can't do this alone. I'm hyperventilating. I hear the fateful words..almost shouted by a doctor...."It's in...I got it in!"...

The doctor was very relieved. He had to use a much smaller tube than he would have liked. He had no choice though, as Jacob's throat was so swollen. He even said to me he was shitting those words...they are human after all...

I'll love that man forever...his name was Patrick.

Jacob was a very sick little boy, so I was advised to ring my husband to get him to come and support me. He arrived at 2.00am. we sat and watched Jacob for hours.


Jacob's recovery, thankfully, came along nicely. He was soon off the ventilator for good. He would pull no more, well almost no more, surprises on us. What a little fighter...he was so clever.


Maddie was tiny. Much smaller than Jacob , and the illness hit her much harder. She developed a pneumonia and sepsis, where bacteria infects the whole body. She was in a critacal condition.

Maddie's eighth night on life support proved to be the toughest night of her, and my, life. She was so ill that she regressed to a nitric gas ventilator, which helps to open the lungs just that little bit more. She was slowly dying before my very eyes. Her sats were so low and dropping steadily. Her carbon dioxide levels in her blood were dangerously high. She was unable to be moved. Or even touched, as her sats would drop. Suctioning...a procedure that removed mucus from the tube and upper airways was out of the question. We had nearly lost Maddie on two previous suctioning episodes. The mucus needs to be removed from the tube so it doesn't block the air going into the lungs. If it blocks, she dies. I would try and be present for every suctioning. At this stage, Jacob was placed into a different ward, and it was very difficult trying to be in two places at once. If I was in with Jacob, I would insist upon a phone call, so I could attend Maddie's suctioning...I would run the 214 steps it took to get to ICU. I am sire I flew some days.

Maddie got so bad that they mentioned another sort of ventilator..the third one...that they may try basically as a last resort. It was an oscilating ventilator that basically shook a constant flow of air into the lungs. They weren't sure how she would react to it, so they were trying to avoid it. It could possibly kill her. Surely it wouldn't get to that...

At 5.00pm the doctoer said, "Let's do it!"

How can I say how I felt. To know your child was going to die. You can't even imagine what it's like, unless you have been through it yourself. I didn't cry...I had cried so much of their short lives. I think I had no more tears left. All I could do was stare in bewilderment. I was a zombie. I began to totally distance myself emotionally from her.

Doctors, nurses and technicians were involved with the huge production of taking her off one ventilator and placing her on another. Raymond and I sat in chairs about three metres away from her bed, just holding hands...and watching. We looked at each other, unable to say a word...the tears began to flow...from both of us. ends part 4...i am teary again and reliving it all over...It was such a painful thing to live through...

Here are a couple more photos of the beautiful babies who fought the battle of their life!!!

So...I'll give you a hint...Maddie made it...this is her a couple of days after her horible night...she still looks very very sick, but believe me...she looks much better than what she did...
The healthier looking baby is jacob...he was very skinny, but in a normal ward....Aren't they beautiful....Jacob actually had another scary incident,,,some very silly nurse cut his nasal prong that delivered oxygen through his nose...because she didn't move it way from his nostril, when she cut it it flung up his nose and got lodged somewhere in his upper airways...that could have killed him...he had to have a small procedure to remove it...
Ok..until next time..catch you all soon..Hopeyou are enjoying this ...take care


  1. Mandy just read the next 2 chapters in Jacob and Maddies life.....ummm I can't find the words to say......I just want to hug you and wipe a way the tears....yours and mine...oxo

  2. OMG i bet you wanted to kill that stupid nurse who got something stuck up jacob's nose. This is just sooo sad Mandy and to see the photos of the babies makes it even harder. i am lost for words... its so sad but looking forward to heaing more xxxx

  3. OMG...I bet you were so worried!!! I was so sick with worry that I would actually be vomiting due to the stress!! What a stupid nurse!!! As if Jacob didn't have enough to deal with!!! I am so glad that the twins made a recovery from their horror first few days and weeks! Looking forward to the next chapter and BTW Who said she wasn't computer savvy!!! Love the new background...see you didn't need my help after all Luv Shaz xoxo

  4. Oh Mandy how heart wrenching this is. I'm wiping away tears and holding my own beautiful baby close - so glad that she is healthy. One of my friends could relate to your story. Her 1st bubba stopped gaining weight in the womb and was quite sick for a long time. In between her 1st and 2nd she had 5 miscarriages. When her 2nd was born it was an emergency c/s 10 weeks early and he was so tiny. I remember having a cuddle with him when she got him home and being scared I'd break him he was like a tiny little doll so fragile. He's had all kinds of health problems like low blood pressure, stops breathing. He's almost 18 months now and he only weighs 7.5kgs - just 2kg more than my little girl. He hasn't put on weight for months and last I was told he has to have heart surgery. And my friend is pregnant again. She's been placed on full bed rest because her waters are partially broken and she's not due till september....

  5. just read this chapter of jacob and maddie's story, im getting there with all the chapters, but seem to be reading them out of order..... it reminds me of Ethan's story, i just wished i documented his story like you did with the twins, so glad they made it, and i agree, what a stupid nurse to do that. im crying as i read the twins story

  6. Thank God your babies are now ok! I think the angels were watching over them :)

  7. Little fighters. They will be the most amazing adults when they grow up. Julie

  8. Mandy, wow... I was crying...with you. SO glad to see pictures of them on your other blog... beautiful children...what miracles indeed...

  9. Don't know what to say! It must be horrible to watch your babies struggling and having to go through all that! Patsy from

  10. Wow... yes, they are beautiful.