Angela's Birth of Bronson

 Angela's Birth of Bronson

 This amazing story was used by permission from Angela's blog:

http://www.theanthonycrew.com/

Bronson's Story

My pregnancy with Bronson was very uneventful. Nothing could ever have prepared us for what happened in the first four months of his life. The only thing that kept us going was knowing that God was with us and that God would get us through, even if it had a different ending than what we were hoping and praying for. We clung to the words in Psalm 91.

 

He will cover you with his feathers, 

   and under his wings you will find refuge; 

   his faithfulness will be your shield and rampart.

Psalm 91:4

May 9, 2011 will never be a day that I forget. Of course I'll always remember that day because it's my son, Bronson's, birthday, but it was also the day that our lives were turned upside down and our relationship with Toronto Sick Kids (Hospital for Sick Children) began.

 

On May 9, 2011 our little Bronson decided that he was going to be 2.5 weeks early and made his grand entrance into our world. I didn't get to hold him when he was born because right away the doctor noticed that his stomach was very distended and started ordering tests and xrays. At eight hours old Bronson was being loaded into a helicopter with a team of doctors from Sick Kids and was airlifted to Toronto. We had decided to leave the hospital before Bronson left because we didn't want to see him being taken away. However, as we drove down the 401 all of a sudden we saw the medical helicopter with our newborn baby in it fly over our vehicle. I don't think there are words to describe how it felt seeing our baby fly away instead of being in the car with us.

 

 

Bronson was admitted to the NICU at Sick Kids and they started doing tests to try and find out what was wrong with him. At three days old I finally got to hold my baby for the very first time. It was only for an hour but I got to hold him. I wish I had known that I wouldn't able to hold him again until he was three weeks old because I wouldn't have put him down that day.

 

At four days old a doctor walked into the room, introduced himself and said, "I'm from oncology". I froze right there. All that went through my head was, "Did he really just say that he was from oncology? Does he have the right patient because we have a four day old baby and he certainly does not have cancer." The oncologist went on to tell us that all of the tests pointed to the diagnosis of Stage 4S Bilateral Adrenal Neuroblastoma with metastases to the liver. Bilateral Adrenal Neuroblastoma is rare, so rare that only 45 cases have ever been recorded world wide.

 

The very next day Bronson was being prepped to have a liver biopsy to confirm the diagnosis. While they were getting him ready he began to have severe breathing problems and had to be intubated and put on oscillatory ventilation. (Remember the episode of Grey's Anatomy where Karev's intern had a baby and he was placed on a ventilator that made him shake? That's an oscillator). 

 

After Bronson was intubated and things calmed down we were allowed back into the room to see him. We stood there for a few minutes just watching our baby and feeling helpless. It felt like a dream. Before we even had time to process everything that had happened we were getting more bad news. Things had just turned life threatening for Bronson and the tumor in his liver was growing very quickly (it was already 4 times the size it should be) and if he started chemotherapy right away he had a small chance of making it through the weekend. Two hours later, at only five days old, Bronson began his first round of chemotherapy.

 

We were told that it would take 7-10 days to see the tumors shrink from the chemo. So we waited...and waited... waited. At 17 days old the tumors were no longer growing but they also hadn't begun to shrink. We didn't think that things could get worse until we were told that Bronson had an E.Coli infection. Not only was he fighting for his life because of cancer, now he was fighting an E.Coli infection with almost no immune system because the chemo had already killed it (his white blood cell count was 0.3). Later on that day we were faced with another hard decision. The chemo wasn't working fast enough and there was a risk that the chemo wouldn't work at all. 


After discussing our options we made the very difficult decision to allow our 17 day old baby to go through 3 days of low dose radiation therapy. I think that's a hard decision to make for anyone but I can't even begin to describe making that decision for your newborn. There are so many unknowns and risk factors to take into consideration. But, our oncologist believed it was the best treatment and we trusted his opinion, so we went ahead with it.

 

3 weeks old - Holding our baby for only the second time.

 

For three days I walked with the NICU transport team through the underground tunnels that connect Sick Kids to Princess Margaret. I remember walking into the radiation clinic and seeing people stare at our entourage of 2 doctors, a mysteriously covered isolette with a baby inside, and me and my husband. I'm sure that our faces said enough. While talking with the radiologist I found out that, to date, Bronson was the smallest patient they had ever done radiation on. Which I am grateful for because I wouldn't want anyone else with a newborn to have to make any of the decisions that we had to make.

 

At 22 days old Bronson decided that enough was enough and he used his toes to pull out his catheter. He had never been able to pee by himself but as soon as that catheter came out he never had another problem peeing. At 24 days old Bronson pulled out half of his breathing tube and was switched over to CPAP. He knew it was time to get rid of it!

 

Things started to improve for Bronson and I even started asking when we could take him home. On June 15, 2011 we were told that Bronson's cancer levels had gone from 240 (at diagnosis) down to the high 20's. We were ecstatic with the news but, of course, then came the bad news that Bronson's liver function was very poor and was barely functioning.

Day after day we watched Bronson's colour turn more yellow as his conjugated bilirubin climbed higher and higher. It was hard to comprehend that Bronson's tumors were no longer a concern and instead, we were facing another problem, liver failure.

 

June 27, 2011 is another day I will never forget. That's the day I was told that Bronson's liver was past the point of regeneration and he needed a liver transplant. The very next day Bronson's name was placed on the liver transplant waiting list as a priority 3 (4 is the highest). (If you're in Ontario and aren't already an organ donor go here to become one!)

 

Looking back, I honestly don't know how I held it all together. Sometimes it felt like every day was a punch in the stomach. How much can one small baby go through? But, every time I thought like that I was reminded that God was with us and he would bring us through. I didn't know what God's plan was but I knew that whatever happened was His plan. I was just praying that it would end with me bringing home my baby.

 

Bronson's liver failure progressed and he accumulated a lot of fluid (ascites) in his abdomen. They started doing abdominal taps every 4-5 days because the amount of fluid made it hard for him to breathe.

 

We waited....and waited....and waited for a call to tell us that there was a liver for Bronson.

 

My sister, Sarah Beth, and Bronson the day before transplant surgery.

 

I guess we were blessed that it was a liver that he needed because after a lot of testing my very own sister was the perfect match and was quickly cleared to undergo surgery to donate a lobe of her liver to Bronson.

 

There are a lot of dates that stick out in my mind but, July 22, 2012 is special because that's the day that Bronson received his new liver. Only 2.5 months old and he was already a cancer survivor and a transplant recipient. I still find it hard to wrap my head around the fact that my sister was able to save my son's life. I look at her differently now because without her we wouldn't have Bronson.

 

 

One week short of turning four months old we left the hospital with our little baby for the very first time. When we walked out of that hospital it felt like we were beginning to wake up from a bad dream. Every minute that we spent wondering when we would be able to bring home our baby was finally happening.

 

Bronson, 11 months old

On May 9, 2012 we will be celebrating Bronson's FIRST birthday and to look at him today you would have no idea what he's been through. He is a happy, healthy little boy who loves to get into anything and everything he can.

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If you want to read the actual blog posts that I wrote while Bronson was going through treatments you can find them in May 2011, June 2011, July 2011, and August 2011 archives.

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**I took a picture for every week that Bronson was in the hospital. Some pictures may be hard to look at, so stop here if you don't think you can handle them**

 Only hours old

 1 Week old - The day he finished his first round of chemotherapy.

 2 weeks old - He was only 6 pounds 4 ounces when he was born and here, 14 days later, he was 9 pounds 10 ounces due to all the fluid he was retaining from a combination of chemo and from his kidney's not working properly.

 3 weeks old

 4 weeks old

 5 weeks old

 6 weeks old

 7 weeks old - his stomach is so big because of all the fluid (ascites) in his belly caused by liver failure. It got worse and worse closer to his transplant. Notice his colour change from 6 weeks to 7 weeks and how jaundiced he suddenly got as the liver failure got worse.

 8 weeks old - The day after this picture was taken we were told that he needed a liver transplant and his name was put on the waiting list.

 9 weeks old 

 10 weeks old - 4 days before liver transplant

 Bronson and his Auntie Sarah Beth the day before their surgeries. Sarah Beth (my sister) was the live donor who donated a lobe of her liver to save Bronson's life.

 11 weeks old - 4 days post-op and still has his breathing tube in

12 weeks old

 13 weeks old - can you tell he's happier with a new liver?!

 14 days old

 15 days old - Going home for the FIRST time EVER!

Getting ready to leave the hospital for the first time with our little boy in hand!

                   Taken 1 hour before going into the OR                   Taken 4 weeks post op

For more about angela and her amazing family please follow her blog here:

http://www.theanthonycrew.com/

Angela's Birth of Little Miss Adorable

The following story was used by permission from Angela's amazing blog.  Please take a look and read about this superhero, mother, and educator:

http://halfpastnormal.wordpress.com/

A Story of Angels – Before you were born

Before You Were Born by Howard Schwartz

This is a story I wanted to share. It’s a summary of a book called Before You Were Born by Howard Schwartz. In this children’s picture book, a child asks for a story about, “before I was born.”

A father tells the tale of the Angel, Lailah, who guards the human soul. She watches over the Treasury of Souls in Heaven, this is a garden of flowers when unborn souls grow. Once a soul is chosen to be born, Lailah brings it down to earth. Lailah plants the soul as a seed in the mother’s womb.

There, in that cozy space a light shines on the child and they can see to the edges of the universe. Lailah tells the growing baby all the secrets of the world – the languages of all animals, the language of the wind, the history of that very soul, and its future.

Just before it’s time to be born, Lailah turns out the light and touches the baby’s upper lip, creating an indentation, Lailah says shh, all this knowledge must be kept secret.

“But don’t worry,” the father tells his now sleeping child, “you have the rest of your life to learn all those wondrous secrets again.

I love the idea of a baby being selected especially for their parents – that special people are destined to have special babies. For me this rang true shortly after Little Miss Adorable was born. When she was delivered via caesarian section and the doctor announced, “It’s a girl,” I was secretly disappointed. I had hoped for a boy.

I had enjoyed the early years with my son so much that I had unconsciously hoped to duplicate them. When I saw Little Miss Adorable, I was again disappointed – instead of an olive complexion, dark hair and dark eyes like my son, she was pink. Strawberry blonde hair, pink skin and blue eyes. This could not be my child, I thought. She looks nothing like anyone.

When I was sent home from the hospital without her I was devastated. I was angry at the hospital for keeping her to take care of. I was angry at the thought that there could be something ‘unfixably’ wrong with her. The nurses kindly advised us that there was likely a genetic issue that caused Little Miss Adorable’s severe hypotonia, and tests would be done. We could only wait. As I cried alone, I rejected Little Miss Adorable. I did not want a baby with ‘special needs.’

As I cried alone and pitied myself an image came into my head. The image was a pink cloud full of wonderful feelings. The voice in my head said, “Now here’s a special little girl that you have to take care of. Then you’ll see how special she is.”

I did not want this. Both Hubby and I are educators and work in the field of Special Education. We knew how challenging Little Miss Adorable’s life would be. But we did not know how wonderful it would be to have her in our lives.
I am not religious.

But I think whoever decided she would be our child did the right thing.

Little Miss Adorable’s Story

She was born on a Wednesday, put into the Special Care Nursery on a Friday, and by Monday the Chief of Genetics was involved.  On Tuesday my husband was signing paperwork to expedite genetic testing to Washington DC and 15 days later we had out diagnosis – Prader-Willi Syndrome.  We were lucky to get such excellent care and an early diagnosis.  I know of some children with Prader-Willi Syndrome who are not diagnosed until their teens.  We are really lucky.

That’s the story we tell people about Little Miss Adorable’s diagnosis.  Just the facts, and not even really a description of Little Miss Adorable.  We leave out most of the details because they are hard to tell to ourselves, never mind curious acquaintances.

On that Wednesday Little Miss Adorable was born by caesarian section and had Apgar scores of 9 and 9.  She was pink, little and plump.  I have to say that a C-section was one of the worse experiences of my life – lying on my back strapped to a table while a sheet blocked my view of the people working on my body.  I know what they are doing and I was trying so hard not to launch into a full panic attack.  I could feel tugging and tried to not think of the anatomy that was being opened and closed.

I felt nauseous during the operation and by the time the doctor had sewn me back up I was vomiting.  I clutched a garbage can, vomiting on the gurney.  Little Miss Adorable was swaddled and tucked by my legs.  I vomited for 14 hours.  I was unable to get out of bed and had tubes attached to me.   My husband held Little Miss Adorable and cuddled her during that time.

By the time I stopped vomiting I knew there was something wrong with Little Miss Adorable.  She was too quiet, and not interested in feeding.  She couldn’t latch on my breast and couldn’t feed from a bottle.  The nurse spent the night finger-feeding her.  Little Miss Adorable flopped like a rag doll when we changed her diaper.  She did not cry.  Something was wrong.  On Thursday the nurse agreed, and called the pediatrician.  The doctor said the baby was mucousy from the C-section and recommended nose drops.  Little Miss Adorable was floppy, not feeding and barely opening her eyes.  We tried the nose drops and finger-fed her all day Thursday.  By Friday a new pediatrician was on call and the nurse stopped her in the hallway.  Their conversation drifted into my room, “I’ve been a nurse for 25 years and never seen anything like this…”

The pediatrician arrived in my room, examined Little Miss Adorable and announced that Little Miss Adorable would spend the weekend in the Special Care Nursery (NICU).  Tests would be done to identify any infection, and then on Monday Genetics would be involved.  Little Miss Adorable was rushed to the NICU and put under a warmer awhile the nurses struggled to find a vein to attach an IV.  Little Miss Adorable was dehydrated.  She did not cry while she was poked and prodded.  Eventually the nurses attached an IV to the vein in her head and we were asked to leave the room while they did a spinal tap.

I was told to pump breast milk and that Little Miss Adorable would be fed through a nasogastric tube.  This tube was inserted through her nose and entered her stomach.   Her stomach would be filled for her.

We did not know if Little Miss Adorable would get better or worse.  We did not know if she would leave the hospital.  We simply knew something was terribly wrong.  My husband called his parents to ask them to come over and stay with our (then) 2 ½ year old son.  What they said remains forever etched on my heart.  They couldn’t, because my father-in-law had tickets to a local hockey game.  The only time in our lives that we asked for some babysitting help they won’t do it because of a fifteen dollar ticket to a local hockey game.  Hubby and I were equally shocked.  I called my sister, who lives 1 ½ hours away.  While on the phone with me she threw some clothes in a bag and ran out the door, burning rubber down the highway.

I slept while my husband picked up our son from daycare and packed him up to visit with his aunt.  When I woke I went back to the Nursery, where I was told I couldn’t touch Little Miss Adorable because care is given every 3 hours (ie. 0300, 0600, 0900) and I was between these times.  I could give her ‘a loving pat’ and come back later.  I looked at the well-meaning nurse who clearly did not have children of her own and died.  A couple days ago Little Miss Adorable was happily a part of me, and now she’s alone in a clear plastic box under fluorescent lights with tubes and wires running every which way.  My whole body was aching for my child, and I was told to come back later.

I was demitted from the hospital the next day.  The morning nurse (again, someone without children) unceremoniously removed staples from my abdomen and told me that I needed to pack up and leave, someone else needed my room.  I was incredibly confused – what about Little Miss Adorable? She would stay here.  I would go home.  I could come and visit her in the Special Care Nursery.

I now realize I was functioning in a complete state of shock.  My husband and I managed to pack up and get my post-caesarian section body into the car.  It was a silent drive home.  When I entered my home I sat on the living room sofa, and dazedly looked at the cheery Christmas decorations I had put up before Little Miss Adorable was born.  My son was out for the day with my sister.  Our home was silent.  I remembered bringing my son home from the hospital – the giddy feeling that song birds and cherubs were hovering around, celebrating his arrival.  The only thought that filled me was that leaving the hospital without your child was profoundly unnatural and wrong.  Every fiber of my being protested the separation.  I was here, in a room full of stupid grinning Santa Clauses.  She was alone, in a plastic box surrounded by beeping machines.

I went into the washroom and cried.  Every part of me was crying for my child.  Milk poured from my breasts in terrible sympathy.  I ached and raged against the injustice of her being left behind.  I did not care what was wrong with Little Miss Adorable or how the medical staff were helping her, I just wanted her with me.

As I write this I recall when my newborn son was readmitted to the hospital for jaundice.  He was a couple days old and the outpatient nurse who admitted him described how I would stay on a cot beside his crib.  She told my husband what to pack for me and immediately sent us to the hospital.  My son slept in a plastic box under the UV lights wearing ‘baby sunglasses.’  I lay beside him on a cot, watching him through the clear plastic, changing his diaper and nursing him.  We would cuddle in the cot together.  At the time I referred to our stay in the pediatric ward as the ‘baby gulag’ – it was cold and I missed the comforts of being waited on by nursing staff.  I did not realize how good I had it.

I wish I could have stayed on a cot beside Little Miss Adorable.  I could have watched her through clear plastic, changed her diape,r and pumped breast milk.  I could have cuddled her in the cot and felt her tiny body beside me.  I realize there is simply not enough room in the nursery for 20 parent cots beside 20 baby cribs.  Parents would be in the way – hogging the washrooms, talking too loudly, asking the staff questions, and cuddling their children.  Maybe even singing and laughing.  But that is what babies need – movement, noise, joy and love.

I firmly believe that now as I did then.

We settled into a routine of sorts.  After my caesarian section the nurse who removed staples from my abdomen gave me instructions.  “Don’t vacuum.”  I was ok with that.    “Don’t lift anything heavier than your baby.”  Ok, I have a 2 ½ year old who can barely walk, how am I supposed to do that?  “Just be a princess, and let everyone else do everything.”  Ok, who is going to ‘do everything’?  My family lived about two hours away, and we already saw how helpful the in-laws were.  Was my husband supposed to ‘do everything’?  What could I do?  What should I not do?  How the heck do you ‘be a princess’ anyway?  I talked to a friend who said I needed to rest.  She offered to drive me to the hospital the next day.  My husband picked me up after his work.  The next day I drove myself, dropping husband and son off at their respective places – work and daycare.   I found the walk from the car to the Special Care Nursery to be excruciating.  It felt like I trudged down miles of hallways.  I lugged breast pumping equipment, snacks and various items I might need.   I sat in front of Little Miss Adorable’s plastic box, staring at her limp form.  She breathed.  She had reddish peach fuzz hair and clear blue eyes.  She was a lovely rag doll, flopping in every direction, and still as death.  I held her for feeding (pouring breast milk into tube that ran to her stomach) and carefully untangled wires to put her back in the plastic box.  At the end of the day I would race to pick up my husband so he could visit Little Miss Adorable before we sped to pick up my son from daycare.  Dinner was a frozen lasagne.  We would collapse into bed to do it all again the next day.  And the day after that.  And after that.

We lived on a treadmill – each day the same, with different doctors and nurses drifting through our lives as shifts changed.  We consulted with the occupational therapist, the Chief of Genetics and the endless parade of doctors and nurses.  Tests were done – ultrasound, MRI, muscle enzyme.  The initial tests for infection came back negative, so did all the other ones.  Little Miss Adorable breathed, silent and still.  She struggled to take a bottle and was tube fed.  She looked like a living corpse.  Her muscles sagged, making her head take on strange shapes.  On a lucky day she opened an eye and looked toward the sound of my son’s voice.  And then nothing.  The highlight of my week at bathtime.  Little Miss Adorable came alive.  Her eyes opened and limbs moved in response to the water and rough washcloth.  After bath she would collapse, exhausted and limp.

We were told of Little Miss Adorable’s diagnosis on the International Day of People with Disability.  My husband and I sat in the Geneticist’s office, hoping against hope that the test would come back as inconclusive.   The Geneticist said Prader-Willi Syndrome.  Insatiable appetite.  Morbid obesity.  We were shocked.  Little Miss Adorable’s muscles would continue to develop, and she would get stronger.  All gross motor milestones would be delayed, but she would eventually meet them.   But she would not decline and was, for the most part, healthy.   As the Geneticist described the traits people with PWS have, she emphasized this: all Little Miss Adorable has in common with people with PWS is the one deletion on chromosome 15.  The rest of her entire DNA sequence is a blend of ours.  And we cannot predict the impact environment will have on her development.  The Geneticist also said that Little Miss Adorable’s older brother would help provide a rich, stimulating environment.

After our Geneticist meeting, my husband and I went for coffee , purely out of habit.  We sat holding paper cups and struggled to make sense of Prader-Willi Syndrome.  Soon it was time to meet the pediatrician who was overseeing Little Miss Adorable.  As we sat in a storage room (the only quiet and private place on the ward) the doctor asked us what we wanted to do.  My husband said he thought a couple more weeks in the hospital using the NG tube would be fine.  I said I want to go home.  The doctor looked at me, and said ok.

What followed was a week of Little Miss Adorable struggling to drink from a bottle while we learned to use the NG tube.  Learning to check the tube for placement was easy (‘Listen for the pop of air’).  For Little Miss Adorable learning to use the bottle was not.  The efforts in drinking exhausted her for hours after.  Bathtime remained our highlight where Little Miss Adorable came alive.

The doctor on call was reluctant to let her come home with the tube in place.  We felt that if feeding was the only concern we could do just as well at home and provide her with a rich environment.  Little Miss Adorable was spending her days staring at the ceiling in a little plastic cot surrounded by the hum of machinery.  This was not a place for helping her learn.

Near the end of our time in the nursery I had a dream about a shopping mall.  I was walking through an empty, dark shopping mall opening door after door and trying to find my way out.  There was no natural sound or light.  Gleaming tiles, flickering fluorescent light, white walls.  Each door I opened led to another darkened hallway.  My feet echoed through empty halls and there was no way out.  I was lost and alone.

I do not remember the day she was released.  I have snapshots of giving the nursing staff cards and cookies.  I do not remember the drive home.  I do remember our oversized calendar marked with an endless string of medical appointments – some nurses coming to our home, some hospital and clinic appointments.  An occupational therapist visited regularly.  In February that year we had 28 different medical appointments – in 20 days!  We would go to three appointments a day, and race to the local Ontario Early Years Centre on our time ‘off’.  Little Miss Adorable became the darling of Mother Goose and Infant Massage Classes.

Little Miss Adorable used the nasogastric tube for feeding for 5 ½ months.  Her muscle tone slowly developed.  At the age of 12 weeks Little Miss Adorable flashed the world a blinding smile, and has been charming the world since.

Follow Angela's blog to learn more about Miss Adorable, Angela's other children, and her remarkable life!

http://halfpastnormal.wordpress.com/

Gena's Birth of Uma

 Gena's Birth of Uma

This birth story was used by permission from the blog at Sabrina Bean Photography

http://www.sabrinabeanphotography.com/

Ups and Down’s Syndrome with sabrina bean photography

Six years ago this past week, I became an Auntie for the second time!

"Having Down's syndrome is like being born normal. I am just like you and you are just like me. We are all born in different ways, that is the way I can describe it. I have a normal life."- Chris Burke

Another girl! She was so tiny and beautiful, but wait, let me back up a minute.

Uma was born 4 weeks before she was due. A home birth that happened so fast that the Doula caught her, the midwife didn’t have time to make it! Uma was born! 10 fingers, 10 toes, 2 blue eyes…. Hooray! Another healthy baby girl.. life is awesome.

The next morning came crashing down on our happy parade.

The next morning Gena thought Uma looked off. Her color was funny and she called her midwife. She came over immediately listened to Uma’s heart and said we need to go to the children’s hospital now. They were received in the ER. They had no idea what was happening. My sister and brother in-law where given their own private waiting room. Gena said that she didn’t want her own room, she knew if they were told to wait in the regular room then everything would be okay. But they got their own room. Finally a doctor came in and said that the good news was that after an echocardiogram was performed they discovered that Uma’s heart was fine. My sister asked why wouldn’t her heart be fine. Then the doctor said with a tear in her eye, “We strongly suspect that Uma has Down’s Syndrome. Gena said she felt like in that moment someone pushed her off a cliff. “She needs some testing”…. the testing for Down’s Syndrome takes over 5 days to get a result. They didn’t know what type of Down’s Syndrome it was. Was is it Trisomy 18, 21? Could the baby be Mosaic? Maybe the doctors were wrong? “Oh please let the doctors be wrong.” That’s all my sister could think. She was given Genetic Counseling and sat in semi-catatonic trance, and waited. The testing revealed the results that Uma did indeed have Trisomy 21, a chromosomal condition caused by the presence of all or part of an extra 21st chromosome, AKA Downs Syndrome. We were stunned.

SInce Uma was 4 weeks early, her birthday fell on the day of my sisters would be shower. Having been at the hospital since early morning, my sister came to her shower (reluctantly) to tell her close friends and family about Uma.

The guests arrived and touched my sisters belly with delight and guesses of how big baby would be…. not knowing that she had just given birth 24 hours prior. After everyone had settled in, my sister began her story of Umas’ arrival. Faces gasped, some cried softly, some just stared with compassion and understanding at my sister. We went around the table and all the women blessed my sister with their wise words and love for this new baby and mother. One of her friends (who also happened to be her Doula) stood up and read this poem to my sister… I will never forget it.

“When you’re going to have a baby, it’s like planning a fabulous vacation trip – to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.”

“Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.”

But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.

The important thing is that they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around…. and you begin to notice that Holland has windmills….and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.”

And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very very significant loss.

But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things … about Holland.

Poem by Emily Perl Kingsley

After the baby-shower we went back to the hospital to see little Uma. Hooked up to monitors and machines, it was so hard to keep it together.

I couldn’t even imagine what my sister and brother-in -law were going through. They appeared as solid as a rock on the outside, but I could see their pain and confusion running through their minds because it was going through mine too.

Even six years later I am ashamed at myself for thinking such thoughts of ..Why? And how could this happen? and Why us? sigh…knowing what I know now about Uma and Down’s Syndrome I feel foolish for ever thinking such things, but I did.

I cried like a baby that day in the hallway of chidrens hospital as I held a pamphlet that read like a car manual . I stared at this sheet of paper in my hand describing what to be ready for….but more tears streamed down my face as all the stepping stones of her life flashed through my mind. They would be different. Would she be teased? Would she be ok?? … and then a beautiful thought transformed in my head! I had been a Winter Special Olympics coach in high school. Those kids were so awesome, full of love and hope and I could still feel their hugs! Some even skied better than me! I cried happy tears as I knew little Uma would be just fine and that there would be even more love in our family! How right I was! Uma has changed our family and lives for the better.

I’m not gonna lie and say everyday has been peachy-keen these past 6 years. Somedays are hard, some days are really hard ,but most are the sweetest moments when she holds your hand and looks up at you with her arms out because she wants to hug you!

“A hug is the perfect gift; one size fits all, and nobody minds if you exchange it.”

I will say that we are so blessed that Uma has no heart conditions to speak of, her eye sight is looking great and she so incredibly smart. Uma is intergrated into a “regular” class most of her day at school. She can be a bit demanding at times or what I like to call ” DIVA-maintennce”

She is quite the singer!

She knows the words and loves to Dance to West Side Story with her sisters. She will tell you the ways of Master Shifu of Kung -Fu Panda, verbatim She will melt your heart with her ferocious hugs and gentle kisses that will help make you feel better. Even her “Goo-Mo-Nings” brighten your day! If you ever get to meet Uma you will be forever changed, I know I am.

Being Auntie is the best!

Did you know that it’s called “Down’s” because it is named after John Langdon Down, the British physician who described the syndrome in 1866. What if his last name would have been Up? Would people look at it differently? Would people still frown at the mention of Up syndrome? How could you not smile at UP’s syndrome

I’ve come across several people who have given me a sad face when I tell them Uma has Down’s. I think children with Down’s are blessed with happiness. There is always a smile to greet you, a hug to hold you and a soft touch to heal your heart.

“So don’t be Down, be Up! -”

There were so many images of Uma it was hard to narrow it “Up”

Happy 6th Birthday my Umie Zoomie! I promise to watch you grow into a more beautiful person and guide you when you want my help. I know you are feisty like your mama and stubborn like your grandpa, but I will always be your Auntie to hold you like a baby! You have shown me a side of life that I may have missed had you not come into mine. I am grateful that you picked us to be your family, that you are here with us. I wouldn’t change you for the world.

"I hope to have as many friends as all the stars in the sky. I think that I am getting very close to my wish." ~ Annie Forts

"I can't change that I have Down's syndrome, but one thing I would change is how people think of me. I'd tell them: Judge me as a whole person, not just the person you see. Treat me with respect, and accept me for who I am. Most important, just be my friend. After all, I would do the same for you."

"I'll give you a chance if you give me one too!" ~

Uma loves to sing and play guitar

She likes to pose for her Auntie

She loves the Wind on her face

Uma loves the swings like any 6 year old

I've never seen a smiling face that was not beautiful. ~Author Unknown

She loves to play pretend!

Nicola's Birth of Benjamin

Nicola's Birth of Benjamin

Used with permission from Nicola's Blog.  Please read Benjamin's full story here:

http://ourbeautifulbenjamin.blogspot.com/

To assist in fundraising please click the link below. Thank you. 

http://ourbeautifulbenjamin.blogspot.com/p/fundraising_16.html

Our Beautiful Benjamin

Benjamin was just 27 hours old when we lost him. Perhaps the strangest part of our story is that we knew he was going to die before he was even born. Benjamin was diagnosed with Patau Syndrome when I was 22 weeks pregnant - a syndrome simply not compatible with life. My hope is that my blog may bring comfort to someone who has lost a child or help someone who might be faced with a difficult decision like we were. Here is the story of my beautiful little man...

Monday, 17 January 2011

Benjamin's Arrival

As the pending arrival of the baby drew closer, I became more and more anxious.  Part of me wanted to never go into labour because I knew exactly what was ahead.  The other part of me wanted it to happen so that I could begin to move on from this nightmare.

Benjamin went 4 days over his due date and when we arrived at the hospital, the Midwive told me that they'd been expecting me for some time.  I don't think they thought that Benjamin would make it this far.  The Midwife was right, Mother Nature was extremely kind and Benjamin was born very quickly with just gas and air.  Under normal circumstances, I guess it was the kind of delivery any woman could wish for.

When Benjamin was born, he didn't make a sound.  There was no miracle like my parents had hoped for, it was exactly as the Doctors had said.  They handed me our beautiful baby boy and Lee and I just cried.  He may not have been physically perfect but to us, he was perfect in every way.  I had never doubted that we had done the right thing but at that instant, I knew that we had given our beautiful baby a chance.  Although his time on this earth was short, it was priceless and precious time.  Benjamin met his Mummy and Daddy, his big Sister, his Grandparents and his Uncle Stuart.  Our little boy has a name, an identity and a family that he got to meet and be loved by.

Meeting Mummy & Daddy x

My Mummy & Me x

Meeting my Big Sister & Making Memories x

   

The next 27 hours were like nothing I've ever experienced or want to experience ever again.  All we did was cuddle our beautiful son  Throughout the course of the 27 hours, Benjamin kept having breathing apnoeas.  When he had the first one, we thought we'd lost him.  It was the worst feeling ever.  He would stop breathing completely and then what seemed like an age later, but was probably only seconds, he would gasp and start breathing again.  We became accustomed to this eventually as it became quite a regular occurence but each time it happened we seemed to hold our own breaths in the anticipation that he wasn't going to start breathing again.  Our beautiful little boy opened his eyes and looked at us.  It was amazing to see him looking into our eyes and it helped to ease our pain.  I know that he knew he was loved.

After about 4 hours, the Doctors decided that we needed to feed Benjamin.  As he had a cleft lip and palate, I wasn't able to feed him myself and he couldn't have a special feeding bottle either, so we had to take him up to the Special Care Baby Unit where he had a feeding tube inserted.  We went up with him - we were too scared that something might happen if we left him for even a minute.  The Doctors decided to administer morphine just to ensure he wasn't in any pain - he wasn't showing any signs of discomfort but I guess they wanted to act on the side of caution just in case.

The hours that followed were just spent cuddling and loving our little boy.  We got to do some of the normal things that new parents do - we changed his nappy and dressed him.  We took some photos and did some camcordering and tried to make some memories in the short time that we had.  It was hard to smile for the family photo but I knew that in the months and years to come, I wouldn't always feel as desperately sad as I did at that moment and it was important to have something to look back at.

Benajmin kept going and at one point, we even talked to the Doctors about the posibility of taking him home.  I think it was just wishful thinking on our part if I'm honest but the longer he kept going, the more I think we thought he may defy the odds and keep going for weeks.  In hindsight, we were probably crazy to even think it but I guess we just wanted to take our baby home like any other normal couple.

In the early hours of the morning on the 22nd of July 2009, our beautiful baby boy passed away peacefully as we cradled him in our arms.

Our Precious Angel

 

My Rock! x

Kayla’s Birth of Oliver

Kayla’s Birth of Oliver

My son, Oliver, was born on December 30th of last year. He was born at 36+2 weeks. My waters broke two weeks before I had him and I was on bed rest ‘til then. I had a natural birth and my labor was intense from the start. I had given birth to my son within 30 minutes of being in labor.  He was 7 pounds 7 ounces and he was a healthy baby boy, but had a few things wrong with him. Two hours after birth, the midwife noticed that he wasn't breathing right and had to give him some oxygen. They tried to pass a nasal catheter down his nose, but it didn't go through. They had to keep his mouth open so he could breathe. They did an x-ray to find out why he couldn't breathe and that's when they found out he was born with choanal atresia, which when is the bone in the back of the nose doesn't open in the development process. He also has a cleft lip, which I knew about before birth.

Later that day, Oliver and I got sent to Westmead Children’s Hospital in Sydney, Australia, where he had lots of tests to make sure there was nothing else wrong with him. That's when we found out he had a PDA, which will close over in time because it is only small. Oliver has been in theater 7 times so far, and will be going back in April for another. All the operations are on his nose. He will be in and out of hospital for over a year. He is one strong baby that didn't want to give up. He was in hospital for the first 7 weeks of his life and he has been in and out heaps, too. He is only 12 weeks old. He is my special baby boy and my miracle. I’m still waiting on some test results to find out why this happened and whether he has too many chromosomes or not enough. It’s very scary when it’s your first child and you don’t know whether it will happen again or not.

My love and wishes go out to all that have or have had sick babies. I know what it’s like to have a sick child. xx

Tags: choanal atresia, cleft lip, Patent ductus arteriosus, choanal atresia stories, cleft lip stories, Patent ductus arteriosus, babies born with choanal atresia, babies born with Patent ductus arteriosus, babies born with cleft lip