Ruby Leisha ... warning - very long with sad ending

Ky · 15-02-2008 20:01

At my 19 week scan the sonographer had to spend a lot of time looking at my baby's heart. She had by then told me that I was expecting a beautiful little girl and I was over the moon! I already had a girl and a boy and was so excited that my DS had the dubious dual honours of middle child and only boy - something to make him feel special

I was called back for a repeat scan a few days later and was told that all seemed fine.

4 weeks later (friday afternoon), I got a phone call from my obstetrician telling me that I had an appointment at Westmead Childrens with a paediatric cardiologist on the monday afternoon and I really had no choice but to go as it was the latest in my pregnancy they could do an echo. I was puzzled as to why it was so urgent, but found a way to get there anyway.

The echo was performed and a vrey solemn cardiologist gave us the news that our baby had several severe congenital heart defects that would require at least 3 open heart surgeries within the first 3 years of life. Our attitude was, well ... we will face whatever we have to face for our little girl to become well. I later found out that the urgency regarding the appointment was that it was the last day that they could have offered and performed a pregnancy termination. In his letter to my obstetrician, he stated that we obviously wanted to fight for our baby, so it was never offered (thankfully - it wouldn't have been an option for me and would probably have only suceeded in upsetting me at the time).

My pregnancy proceeded incredibly smoothly. I had gestational diabetes and had been on insulin from 9 weeks pregnant and was working with an amazing endocrinologist to keep it under control. We suceeded in keeping my blood sugars pretty stable and my health and feeling of wellness was pretty impressive for an older Mum.

At 39 weeks, I travelled to Westmead Public hospital to give birth to Ruby by elective c-section. My blood pressure skyrocketed the night before and they threatened to admit me for the night, but I managed to talk them out of it ...

**jacks mum** · 15-02-2008 20:15

I think your story is missing the ending but it sounds like a sad ending so hugs to you and your family.

Ky · 15-02-2008 20:16

Tuesday the 22nd of January finally arrived!

I got to the hospital expecting to wait a while as they had said I was several down on the list only to be whisked into surgery almost straight away! I didn't even have time to go for a wee and I was busting!!

There was a wonderful team waiting in the theatre - the atmosphere was relaxed, a new obstetric intern was doing the operation with a wonderful teaching obstetrician who was so gentle, informative and calm. The anaesthetic team were very friendly and reassuring and before long I was lying on the table waiting to meet my bub. Dh could see what was going on reflected in the glasses of the ob's and popped up to have a look occasionally - it was fascinating! I could hear all of the instruction and was really interested as it was detailed and exciting.

At 10:58am a huge, pink baby was pulled from my abdomen - not without a struggle, as she had insisted on waving her hand out first and had to be persuaded to put her arm back in so they could pull her out! Ruby Leisha had arrived - she weighed 4.355kg (approx 9lb 8oz), was 57cm long and had a 36.5cm head circumference. Best of all ... she was not the sickly, blue baby we had expected but was pink and screaming! This is a photo taken in the NICU at an hour old ... click

She was checked over, got an apgar of 9 at 5 minutes and was taken quickly to the NICU at Westmead Public followed closely by her very proud Daddy.

I was stitched up, but not before a further teaching session where I was introduced (literally - I could feel them poking around, not uncomfortable though) to each of my ovaries and learnt in detail about the anatomical make-up of my abdomen. Still, each moment really fascinating ... as I said - a great experience. I was taken to recovery, but only spent a total of less than 15 minutes there as the call came that if I was to see my baby, I had to be taken to the NICU straight away as she was being transferred to Childrens hospital in 10 minutes. I was taken down, saw her briefly from a distance and then was taken to my room on the ward.

My beautiful girl was then taken to the Grace Ward High Dependency Unit at Childrens Hospital where she was to spend the first nearly 3 days of her little life.

She was doing so well ... medication was keeping the newborn duct in her heart open so her oxygen saturations were 98-100% without ever needing oxygen! She looked so big amongst all of the little bubs in there and so healthy - it all seemed like she was in the wrong place and that one day they would notice their mistake and send her home.

**Rainbowbrite** · 15-02-2008 20:35

What an adorable little girl

I fixed the link for you.

Ky · 15-02-2008 20:36

I finally was allowed out of bed the next morning and when she was just under 24hours old, Dh took me to Childrens hospy and I got to hold her for the first time. We got some beautiful video of her trying to open her eyes and making screwed up little faces, smiles and gentle little bubby noises - I will always treasure it!

She looked so well and I couldn't bear the thought of being a whole hospital away from her - the nurses were excited to have such a big baby to look after and one by one they were all falling in love.

Dh had to go home that day to look after our older kids and to return to work, so I relied on porters to wheel me between the hospitals - it was a bit frustrating as they were very busy, but I made the most of my visits and stayed for hours at a time. I started doing the only thing I could for her and was soon expressing on a 3 hourly basis to build up my supply and to make sure they had enough frozen colostrum and milk for when she finally started being fed. She was surviving on the dextrose in which her medication was being administered. She was such a peaceful bub and never complained when they stuck needles into her - just slurped on some sucrose contentedly

This is Ruby at a day old ...

At 2 days old I had an interview with her surgeon ... the echos they had done on her heart in HDU had confirmed that she was very sick, but her defects were different to what had been anticipated. They needed to operate on her the next day if she was to have any chance. I did the hardest thing I have ever had to do and signed a form telling them they could cut my perfect little girl open and completely change the configuration of her heart and arteries.

I said a sad goodbye to her on the morning fo her third day - she was wheeled off into the theatre with me standing sobbing and watching her go - she looked so peaceful and unaware of what lay ahead. I went back to the ward and waited with a pager by my side. The expected 6 hours passed and I hadn't heard anything and by the time 8 hours had passed I was pacing the room, so rang for a porter to take me over anyway. While I was still waiting for the porter and hour later, the pager finally alerted me to the fact that she was out of surgery. I finally got to see her half an hour after that.

She was in the Paediatric Intensive Care Unit on a ventilator with drains, tubes, several drip/infusions and an open chest covered by a white patch. She was in a drug incuded coma, on high dose morphine to ensure she was in no pain or distress and looked beautiful! All I could see was my little girl in the middle of everything that was there to help her.

The surgeon sat me down and told me that everything had been more complicated than first suspected. Her heart had had several defects that meant it was more viable with 2 chambers rather than four so they had completely remodelled it and had to re-program the 2 sides to work together. Her aortas had been the size of a cotton thread and although they had harvested one from her arm to replace the aortic arch, they had had to make a second aorta out of goretex to ensure she had enough blood flow to her lower body. She had other goretex arteries - all of which would have to be replaced as she grew. The good news was that her heart was coping well and she had not needed to remain on ecmo (bypass) after surgery.

The prognosis was pretty good - she was strong and showed plenty of signs of recovering well. The critical first 24 hours passed without incident and they were confident that she would keep improving.

**mum_inlove** · 15-02-2008 20:43

She's soooo beautiful..

I don't think I can read anymore, I'm getting so choked up already..

**GraceUnhearing** · 15-02-2008 20:48

Oh Kyra she is beautiful!
i have tears streaming down my face

what a gorgeous little angel you have now

Rip little Ruby

Ky · 15-02-2008 20:52

On the night of Saturday the 26th of January, she crashed! She was taken back to theatre and placed on ecmo again (bypass) and we were given the news taht this was the last chance she had. If she crashed again or was unable to be taken off ecmo after a few days rest, we would be faced with the decision of whether to continue fighting or to let her quietly slip away. Of course, neither Dh nor I slept after that.

She remained stable for a few days and Dh went back home with the kids. Surgery was scheduled for thurdsay the 31st of January to take her off ecmo. She was so stable and doing so well, there was a huge amount of hope and confidence that she would make it. And she did!

This is Ruby just before they wheeled her around to surgery - they had taken quite a few lines out of her and she was looking really good. Warning - this is a pretty graphic/distressing picture ...

As I said goodbye to her at the theatre door, she shed the only tear of her entire life - I was overcome with emotion and spent the next few hours in my room at Ronald McDonald House sobbing for my little girl.

When the call came to say she was out of surgery and that the surgeon wanted to see me, I bolted up to the PICU. I walked through the door and immediately inside the surgeon, anaesthetist and her nurse were waiting for me. They ushered me into a little room and sat me down. With tears running down their cheeks, they told me that my little girl had sucessfully been taken off ecmo and had been really stable, but on the way back to the ward had peacefully slipped away and had been unable to be revived. My precious little girl had gone to live with Jesus at only 9 days old.

We farewelled Ruby last friday (08/02/08) in a beautiful celebration of her little life.

I can't express enough thanks and gratitude to the staff of both hospitals ... they treated both Ruby and I so incredibly well. Ruby was sung to, had secrets whispered in her ear, encouraged, told she was beautiful and loved and given the gentlest and most thorough care ever given. As her Mum, I couldn't have cared for her better - I just would have had a different love for her.

I got to know my little girl - she had ticklish feet, settled instantly when her chest was rubbed and liked to talk back when spoken to.

She was serene and beautiful and I will always miss her.

Her Daddy, Sister and Brother are all aching for her too, but we are assured that she has been spared a life of painful surgeries and is now in a perfect body waiting for the day in the distant future when we all join with her in a game or two with the balloons we release for her and Nikki and Sam our two miscarried bubs at her funeral.

Everyone - no exceptions - who met her, fell instantly, deeply in love