Thursday, March 31, 2011

Jacob and Maddie's Story...Part 1

Many of you know my little guy Jacob and how he suffers from a life threatening illness...some of you may know about Maddie...I feature her in many scrappy pages, she suffers from deafness...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




vicmbee said...

That was lovely Mandy as a mummy of a premmie baby I understand it's just not the same feelings you have as bringing a new bub home and the emotions you go through..and how you appreciate all the special NICU staff.. Sam was 8 weeks early so spent about 7 weeks watching him grow enough to bring home just in time for his 1st xmas.. :)

amanda73 said...

i read this when you had that other blog...and youve told me what they went through...must have been way scray for went through so much with them and continue to go through alot.... i had similar probs with Ethan, he was 6 wks early weighed 4lb 15.. and at 9 wks got RSV and nearly died, spent his whole first yr in and out of hospital........

Kristin said...

Wow. I don't even know what to say. What a wonderful story of heartache, happiness and love. Thank you for sharing my friend, xoxoxo

Marelize said...

Your family have been through so much Mandy. I've got the greatest admiration for you. Thanks for sharing your story. (((hugs)))