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

Friday, May 22, 2009

Part 3..Jacob and Maddie's story

When they arrive, they get the relevent information and hook him up onto some oxygen. They are amazingly calm. My sister stays with my other children, while I take the trip in the ambulance with Jacob. They work on him in the back, "bagging" him all the way. I sit in the front, turning to the back constantly asking them..."Is he alright?"

"He'll be OK love."

We arrive at the hospital 15 minutes later. So much happens. It's like watching ER, but it's happening to me and my baby. I've set myself into a kind of a limbo state. I guess I have detached my emotions from my body. Thats how I cope with situations I know i can't handle. Drs work on him. Nurses are everywhere. We are in the recuss room. I can't believe what's happening. It seems so dreamlike. The Drs try and put a canula in his tiny, delicate hand. I should be fine with this precedure...I nearly vomit. They tried didn't work. The Dr says he will intubate him. Not knowing much about ventilators I didn't realise the significance of this action. I went along with everything they said...they were the doctors.

It took close to four hours to stabilise him so that he could be transferred to the children's hospital. Once he was stabilised I was told I could go up to him. I was scared. I didn't want to get emotional. I could not have coped if he.....

I walked up to him, such a little thing on such a huge bed. So much equipment surrounding him. I gently stroked his little arm with my softly and slowly. I sobbed. I sobbed because when he left hospital 3 weeks ago I promised him he would never be in pain again. Never hurt again. I broke my promise. I am so sorry little man.

The transport team arrived, and , after about an hour of organising, Jacob left for the children's hospital. My husband turned up with Maddie at some stage. I recall going to a "quiet " room and making a phonecall to him to meet me at the hospital right away. There was no helicopter availabe, and no room in the ambulance for passengers, so we had to make the long journey seperated from our baby, not knowing what was going to happen to him on the way...for all we knew he may nat even make the was just horrible.

The trust that is required in situations like this is amazing. I am the type of person that has a panic attack if my children ever travel with someone else. So, to let my baby go by himself was a huge deal to me.

We arrived at the hospital 25 minutes later. We checked at the information desk to see if Jacob had arrived. He hadn't. I had images of my baby dead at the side of the freeway, due to equipment failure We decided to get Maddie checked out in the emergency room while we were there waiting for Jacob to arrive, as she was a little unwell. Her oxygen levels were down, so they decided to keep her in a ward overnight for observation.

In the emergency ward, we bumped into the doctor that transported him to the children's hospital. She said that the journey went well and that he is now up in ICU. I just hugged her from relief and thanks...she probably thought i was a bit of a nut. That was the least of my worries. My husband went to help him settle into the ICU while I stayed with Maddie.I was so torn...with one critacally ill baby and another very sick one. I was an absolute mess.

Over the next week, a whirlwind of events were to turn our world upside down. Twenty four hours after Jacob crashed, Maddie followed. It was no surprise to me that they decided to put her on life support as well. She was struggling with evry breath too. The intensivists, the ICU doctors, warned us that babies die from RSV bronchialitis, a virus that produces mucus in the lungs, too much sometimes, for tiny, premature lungs noy properly developed. It was only as time went on that I truly believed them.

OK ladies...i am yet agian bawling....its like I am right there again as I write this...I can only handle so much at a time...Sharon said she would love to see more be honest Sharon..taking photos was the last thing on my bubbies were lying there dying, the only time I took a photo was the day after the night we nearly lost maddie...but I will put a couple in of them when they were little...I don't have many though!!

Here is Maddie and Jacob...this was when they wre in the NICU a few weeks after they were born...I don't have photos when the were first really sick...this is just normal stuff for premmies...Anyway..thanks for having a little look at my story...Take care until next time....xxxx

Sunday, May 17, 2009

Installment 2

The next couple of weeks went by in euphoria. My tiny babies were home. We had plenty of visitors. They all enjoyed wearing the babies like a brooch. They were so tiny, thats what they looked like.

Two weeks after the babies were home they needed to se their paediatrician for a routine check up. They were both still quite sleepy and needed to be woken for their feed...but that was pretty normal for premmies. They also had a bit of a runny nose, but that was about it.

The paediatrician assured me that all was fine, and he laughingly added they would be in hospital with bronchialitis within a week.

I thought nothing of it, as they basically had the snuffles. A little cold. 6 days later I took Jacob to my locval doctor. His feeding was not great and he was quite lethargic. He diagnosed bronchialitis, and prescribed atrovent through a nebuliser. This was to help his lungs a bit. That thursday night he was still not feeding well, and he had turned quite pale.

He slept through the night. I thought it best he get a good rest to help him recover. I checked him at 8.30am. He was very pale and he had a blue tinge around his eyes, nose and mouth. Alarm bells should have been ringing, but I was told that premmie babies often turn a bluey tinge when they have wind. Around 9.30 he still hadn't woken, so I decided to wake hima nd give him a feed.

He didn't want to feed. He didn't wake up properly. Did I imagine it...or did he just stop breathing??? No! Don't be stupid. You're being paranoid. I'll ring the Dr and see what he says. The Dr said he rang the paediatrician and he will see him next Friday. I tell the Dr I think my baby is going to die. He says go to the hospital. I ring my sister who lives a couple of minutes away, and ask her to come with me to the hospital, so she can sit beside hima and shake him if he stops breathing. I give Jacob some ventolin in a nebuliser, I ask my sister to help as I gather Jacobs stuff to take to the hospital. " Mandy...I think he just stopped breathing" I drop his nappy bag and run to his side.I assure her, and myself, that he is breathing...but then I see it. The vapour is pouring out of the machine and not being inhaled. He HAS stopped breathing.

I panic, I have never called an ambulance before. I slightly shake hima nd he starts breathing again. I feel stupid thinking to call an ambulance. What if i am overreacting....He stops again. He can't start breathing again..............

I call 000 and scraem into the phone..." My babys not breathing!!!"

They begin to tell me what to do. I have forgotten how to do CPR. I relay the directions to my sister who is still holding him.
Put hin on the floor.
Turn him on his side.
Is he breathing?
I tell them no.
Do a little puff in his mouth.
Then I decide that if my baby is going to die, I will be the one who has trried to save him. I pass the phone to my sister.
Check his chest.
I lifterd his singlet.
Is his chest going up and down?
Blow in his mouth.
I do this. He takes a few breaths, though very shallow.
He stops again.
Blow in his mouth.
I am frantic. I don't know what to do. My baby is going to die. What will I do? How will I handle it? I'll go insane. My other children are home from school, sick with asthma. They are jumping on the lounge going crazy screamib\ng..."Jacob's going to die! Jacob's going to die!" They don't get it...they are too little.
Is he breathing?
Di it again.
I blow in his moth. I know if i do it too hard I could harm him...even burst his lungs. If I do it too softly, it could have no effect at all. He starts to take a couple of breaths. My sister hangs up the phone. They obviously think everything is ok. Its not. They assure her the ambulance will arrive soon.

I continue to give Jacob mouth to mouth until the ambulance arrives. It felt like a life time, and I was so relieved to hear the sirens. I will never forget the spot on the floor where he lay as I tried to keep my dear little boy alive. I often look at the spot and shake my head in disbelief.

That will do of my story for now...I am getting all emotional writing it...even though it was 8 years ago....
Thanks for reading...until next time.
stay safe and give your little ones lots of hugs

Thursday, May 14, 2009

This is new...Day 1

Hi there everyone, or no-one...who knows really....

I have many passions in my life....

My family, extended as well....

My scrapbooking...

I have so many, I love many crafts, painting, writing...

I guess you would call me ecclectic in what I do and like....

This is for my non-scrapping stuff....

Many of you know I have 6 children...

They are all precious to me , and i love them all to bits...

But the twins, Jacob and Maddie,

Had a very tricky start to life...and in a way, 8 years later, it still effect me in many aspects of my life...

I thought the first thing I would do on this blog is to write their story...

Its quite long, so I will have to do it in sittings, and its not %100 perfect in how it is written, and I am certainly not saying I am a wonderful writer...


I think it is going to be great therapy for me...even if not 1 person reads

If you do, thankyou in advance...

Here are Jacob and Maddie, they were born 10 weeks early, Maddie weighed 3lb 8oz and Jacob weighed 4lb 3 oz...They were tiny as I usually had big, healthy babies.....I was very upset and found the NICU quite scary, but soon got used to it....
I will now begin the story....
Precious Miracles
Jacob and Maddie are lying on their beautifully patchworked Noah's Ark quilt, with it's rich creams, reds, blues , yellows and greens. It pillows around their bodies, their matching pink and blue teddies, and their lime-washed cot that they share. A vast contrast to the harsh metals, plastic and sterile whites that surrounded them only months ago.
Jacob and Maddie were born on the 4th May, 2001, weighing only 4lb 3oz and 3lb 8oz. They were born ten weeks early. That in itself was a difficult time to live through. You have an expectation of how your baby, or babies, should look, and the motions you should go through when they are born. When something unplanned happens, and you need to deliver your babies early, the confusion and subsequent loss that you feel is overwhelming. The loss of ther ime in the womb. The loss of "normal sized" babies. The loss of the labour and birth. The loss of that perfect time in your life that you have been looking forward to since discovering the pregnancy.
My babies are usually big, beefy, bouncy babies. Not thin, scrawny, tiny things that resemble skinned rabbits. They didn't feel like they were mine. It was like they belonged to the hospital. Immediately after the birth, they were rushed to the NICU (neonatal intensive care unit). It was days before I actually got to hold my babies.
When I first saw them in the Unit, after they had been taken away from me, I was in shock. They were surrounded by tubes, monitors and machines, all of which my husband and I grew to rely on for the survival of our twins, but which seemed so scary and forieng at the time.
Alarms constantly going off became routine. You eventually got to know each sound, and knew when you needed to worry, or when you needed to tickle their feet to remind them to breathe. Oxygen saturation levels (sats), bradicardiacs, apneas, C-pap, long lines, canulas and catheters all became part of our language...part of our lives.
I didn't want to leave the post-natal ward of the hospital. A type of grief was lingering because I knew I would have to leave my babies behind. If you speak to any woman who has had a child, she will tell you that one of her most euphoric times is when her newborn baby is lying beside her in its crib, and she is adoringly lookin at it in wonderment and overwhelming love. Or, when she is wheeling her newborn through the doors of the hospital and on her way home.
I was to have none of that. I was sore from the caesar. I made my husband take the celebratory flowers, cards and gifts home a day prior, as there was no way I was walking out of the hospital with them, and no babies.
I did leave. I actually made it to the car with out crying. Once in the car I sobbed...for 4 hours. My husband stopped in the chemist on the way home to get a breastpump and other sterilising equipment. I couldn't do much for my babies, and I felt so guilty because of that. But the one thing I could do was supply my babies with the goodness of breastmilk.
This took a huge effort on my part, having to express for twins meant being at the breastpump every two to three hours ( feeling like a cow), for about half an hour. Then I would pour it into a small plastic container, then time and date the sometimes pitiful amount, add my name with 2 smiling faces, and place it into the fridge. Then twice a day would take the "preciuos cargo" , in its winnie the pooh wetpack, to the hospital and place it in the NICU fridge.
To keep this supply was extremely difficult, with so many stresses, and with them not being with me, but I persisted. They hardly ever needed a supplimentary feed of formula. Something I am quite proud of now.
The weeks went by, and my husband and I began to care more and more for the twins. Doing their cares was a routine that occured every 4 hours., an hour apart, to allow time for their feeding.
You would methodically get a wad of cotton wool and wet it with warm water from the tap, set that beside their crib, with sterile cotton wool buds soaked in sterile water, cotton balls soaked in saline and a nappy. You would start at the top of the baby, wiping their eyes with the balls, from the inside out. You would then clean their mouth, tongue and gums with the cotton bud, refesh their bottom with the cotton wool and put on their new nappy. Finally, you would change the site of their sats probe, as the bandage that held the probe in place would dig into their delicate skin( it was paper thin), and sometimes give incorrect readings. I always gave the old site a little massage, as i would have like someone do that for me. My babies were tiny. It didn't mean they felt no pain.
Handwashing became a necessity that you would perform like someone who had repetitive compulsive disorder. Cross infection was something you wanted to avoid. I washed my hands so often, that after a week, I developed dermatitis, which became infected...I still have brown scarring.
Maddie and Jacob became less and less dependent on oxygen, and the various drugs that helped them breath, digest their food, and keep their hearts beating. They made the progression from BAY 1, where the sickest babies go, to BAY 4, which is where the babies go to finish their growing and master feeding.
Before I knew it, there was mention of the twins going home. At this time I was warned not to take them to public places, and to make sure people washed their hands before handling them, for fear of germs and illness.fter a much hurried preparation on the eve of their departure from hospital, everything was ready. It seemed surreal at the time, as 5 full weeks had passed. It didn't seem like I had given birth to these babies, even though I was still sore from the caesar, let alone actually getting to take them home.
It was Friday morning when my daughter, Jess, and I walked the double pram throughthe doors of the hospital. I nestled the babies into their pram Seeing such a normal piece of equipment like a pram near them made me realise how tiny they really were. They looked like dolls lost in a giant pram.
I began to cry. From realisation. From grief. From fear. For the loss of the machines that told me my babies were ok. For the loss of the nurses who answered my every question and helped my babies finish their growth and development they needed outside the womb. For all the mums and dads that lost their little ones while we were in there. The NUM gave me a comforting hug. I cried even more.
I had made friendships with other mums of premmie babies. Those type of "situation" frindships you form throughout your life. I assume most people get over them. But, I find it emotional to get over them.
I cried because I would never see the obstetrician that saved my babies' lives...and my own. Nor the neonatalists, who kept my babies alive those few crucial weeks. I just wanted to hug them all and tell them how much I truly appreciated everything they did. I will for the rest of my life.
So. I cried for everything. For the loss of that particular part of my life that was over. Don't get me wrong. I was over the moon my babies were doing ok and that we could all have some sort of normal life together as a family. It was just the end of a part of my life. I'm hopeless with endings....that's all!!!
This is enough for now ...I will continue the story tomorrow....
Until then, take care