'We were all a family': Preemie mom's poem to thank hospital staff - Alternative Media Forum


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Tuesday, 14 March 2017

'We were all a family': Preemie mom's poem to thank hospital staff

Maegan Sheiman and her husband, Josh, just wanted to have a baby. But it was never going to be that simple.
The quest to grow their family has been a roller coaster ride of exciting ups and terrifying downs. "Every good thing that happened, something bad would happen," she said.
But with an amazing amount of love and care, their hope has a reason to thrive.

Defying the odds
Sheiman, 33, has two rare diseases: medullary sponge kidney disease and Ehlers-Danlos syndrome. The kidney disease causes her body to create and pass a multitude of kidney stones. Ehlers-Danlos syndrome is a rare genetic disease that affects connective tissue and blood vessels.
Neither was confirmed until she encountered complications during her first pregnancy in 2005, during a previous marriage. She gave birth to a healthy baby girl, Isabella, in 2006, but had a hysterectomy that year.
The Sheimans searched for an egg donor as well as a surrogate in 2015, two years after getting married. They found a donor with a strong resemblance and similar background. They were also excited to locate a surrogate, LaToya, in their hometown of Humble, Texas. LaToya had had a healthy child of her own and was eager to help other families bring children into the world.
"I anticipated whoever would be carrying our baby would end up being part of our family forever," Sheiman said.

Maegan Sheiman with LaToya and her daughter while LaToya was pregnant with Beckham.
Sheiman and LaToya bonded quickly and easily. LaToya agreed to change to an all-organic diet and was happy to have Sheiman accompany her to every appointment. They texted every day.
Sheiman's daughter, Isabella, was hoping for a baby brother. She received her wish when a faint line showed up on LaToya's pregnancy test and the Sheimans threw a gender reveal party at the end of 2015. The baby was due on May 5, Cinco de Mayo. They joked that he was destined to be a party baby.
But Sheiman knew that something was wrong when she received a scared phone call from LaToya late one night, not long after Josh's birthday in January 2016. LaToya was being rushed to the hospital with bleeding.
The Sheimans rushed to the hospital. Only one person was allowed into the cramped room in the maternity ward, so Maegan went in. LaToya was screaming, in excruciating pain.
"I knew something bad was happening," Sheiman recalled. "I didn't think that he would be born alive."
Doctors told her the baby was coming, and there wouldn't even be time to give LaToya medication.
Forty-five minutes later, on January 19, Beckham came into the world at 24 weeks gestation, weighing 1 pound, 8 ounces. The nurses rushed him into an incubator and kept him warm to ensure that he would survive. Doctors still aren't sure what caused the early birth.
"I got a glimpse of him and have never seen anything so small in my life," Sheiman said. "I did not know that a human could be that small and look like a human. He had a strong heartbeat, and he came out kicking like crazy. I'll never forget it. It was ironic, because his name is Beckham," like the soccer star.
Baby Beckham in the neonatal intensive care unit.
Sheiman was told that Beckham would be rushed to Texas Children's Hospital, an hour away through rush-hour traffic in Houston. That's when she realized her husband had been in the waiting room the entire time, unaware of what was happening.
When he saw Beckham, he asked in shock, "Is that the baby?"

New normal at the NICU
Dr. Mona Khan, a neonatologist at Texas Children's, greeted the stunned Sheimans when they arrived. Beckham had been placed in an incubator and was connected through tubes and IVs to numerous machines and devices.
Khan could tell how nervous they were. Together, they pulled stools together around Beckham's incubator and talked about what to expect. Sheiman had plenty of questions.
The Sheimans were told not to be too hopeful the first week, considered the "honeymoon phase" in which things can initially go well before going horribly wrong.
A family advocacy group at the hospital gave Sheiman a notebook and told her to document everything. She wrote down every stat, every oxygen measurement, every discussion with every doctor and the trends tracking her son's improvements and declines. It helped her understand and feel in control of things.
The hospital staff impressed upon Sheiman how important her presence would be, not just to make critical decisions but to bond with a baby she couldn't even touch.

A physical therapist holds Beckham in the NICU.
She was able to take time off from her consulting work as a project manager thanks to the generosity of her co-workers, who contributed their time off to carry her to August 1. This was vital for the family breadwinner.
"We treat the family as part of the medical team," Khan said. "Every piece of information has to be discussed with them, and they have to feel that they are part of the decision-making process. We are all advocates for these babies, but they are their baby's strongest advocates."
The Sheimans moved into the Ronald McDonald House to be close to Beckham and see him every day for the first two months.
Beckham was tiny, his head the size of a kiwi. An incubator monitored heat and humidity to keep his frail, bright pink, almost translucent skin from drying out. A bit of sticky fabric used with an instrument to detect oxygen ripped the skin off his foot.
And then, a succession of issues arose: bowel perforation and surgery to repair it, a hernia, brain bleeds, heart defects and issues, a blood clot, a staph infection, pulmonary hypertension and even the threat of blindness. Those are just the big ones, Sheiman said.

Khan and the entire medical team became invested in taking care of Beckham. On nights when things looked bad, the attending physician would pull up a cot and sleep next to him. Even nurses who weren't assigned to him would ask Khan how he was doing each day.
"You get really invested," Khan said. "This is your patient. You are taking care of them, and there is so much that is happening. Anytime there is a bad outcome, there is a slice of your soul that is taken away. With us, it's definitely emotional. Health care professionals, respiratory therapists, nurses, physical therapists -- everyone was very invested and involved. He has a special place in a lot of people's hearts."

In addition to providing around-the-clock care, the doctors talked with Sheiman about "kangaroo care," in which mothers are encouraged to hold their babies with skin-to-skin contact.
Sheiman held Beckham for the first time two weeks after he was born. It took four people at the hospital, as well as her husband, to help tape all the boy's tubes and wires to her shoulder so she could hold him without doing any damage.
"He was so small, I didn't feel like I was holding anything," Sheiman said. "But I was so excited to finally hold him and have that bonding time I had been craving."
Every time she held him through the kangaroo care method, his oxygen levels would improve. "If you had not been there every day, he would've ended up with a breathing tube surgically implanted in his neck," the doctors told her.
"It gives such a good feeling to parents to be doing something to help their baby," Khan said. "What greater feeling is that?"

A poem of gratitude

In April, Beckham finally got to meet his sister. Isabella was so happy she cried while smiling her biggest smile, Sheiman said. It laid the groundwork for a deep bond. If Beckham doesn't feel like smiling, he needs only to see his sister to start laughing again.
LaToya recovered but faces long-term consequences. Any future children will be at risk of being born prematurely. The single mother putting herself through law school is an inspiring superhero, Sheiman said.
Although LaToya felt guilty about what happened to Beckham, Sheiman insisted it wasn't her fault and urged her to come see Beckham. Now, they visit regularly.
After 185 days in the NICU, Beckham went home for the first time in July. He's still on oxygen and can't be around other children because of the dangers of flu season, but the Sheimans are hopeful for the future.
Even when he's having blood drawn every month or enduring painful procedures, he remains "the happiest baby," Sheiman said.

In January, Beckham turned 1 year old. All of his doctors and nurses were invited to his birthday party. Sheiman wanted to deliver a speech to thank everyone who cared for Beckham. It turned into a poem.
"Everyone put their heart and soul into saving his life," Sheiman said. "They needed to know how much it meant to us. While we were there for 185 days, we won't forget it. They're practically raising our kids."
She shared the poem at the party but also created cards and had them sent to the hospital. The poem was also included in a hospital-wide newsletter two weeks ago.
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"It was beautiful," Khan said. "Everybody was just really overwhelmed. It's a tear-jerker, full of emotions and very raw.
"We love happy endings. We call them our graduates, these little babies that have been here for so long. We love seeing them. It makes us feel that we are doing something that makes it all worth it."
Beckham still has quite a journey ahead of him, but the Sheimans remain hopeful.
"He was not born normal, and I don't think he will be a normal kid," Sheiman said. "I want him to grow up to be happy and healthy, but however he turns out is however he turns out, and he will always be extra special, and he will have big things planned for his life."

Beckham, then and now.
The full text of Sheiman's poem is below:
I'm just a mother not big and not small
An ordinary mother and that is all
I have a child my sweet baby boy
Who has never been just an ordinary boy
He came to this world 1 pound and some ounces
His parents unsure if they could announce
His early arrival of 24 weeks
At 12 inches long we weren't ready to meet
To the NICU is where we were quickly sent
Overwhelmed by this new place our time would be spent
You were covered in tubes and kept in a case
On meds and support, what on Earth was this place?
Noisy and dark we were filled with fear
All the while we could not hold you near
So overcome by percentages and numbers
Treatments and surgeries, survival rates stole our slumber
Through incubators, warmers, lights and lines
One day we were told you would run out of time
We cried so hard and couldn't stay strong
So you showed everyone that you could hold on
When one thing was fixed another would break
From your bowels to infection, lungs and your brain
Your heart and your liver what more could go wrong
You never gave up you always stayed strong
You had countless transfusions, PICS and scans
The blood tests sometimes just got out of hand
The numbers we tracked and monitors watched
Was all forgotten once in my arms you were caught
But there's more to this boy than his numbers and stats
His procedures and therapies, appointments and chats
It's not how he started that makes him so grand
But what he accomplished and who held his hand.
It's the doctors and nurses, therapists and techs
Who have given their all to save our sweet Becks
Who studied and fought, collaborated and led
And stopped at nothing to get this boy fed
It's not just our preemie who suffered and fought
But also his team who we care for a lot
It's more than the meds and treatment plans given
It's the comfort and guidance the things that were hidden
The things that you know others won't see
Only the families you treat and have to let be
We come and we go and you send us away
You jokingly tell us to never come back your way
But we never forget the 185 days
Where we were all a family with this boy to raise
To help him to grow and fight and to live
So that he may go home and love we can give
We appreciate all you have sacrificed
And a quick goodbye just doesn't suffice
You will always be family this we know
And I hope you continue to watch Beckham grow
It is because of you that he is here
In our hearts, you, we hold so very dear
We love you so much and it was so hard to go
You have given our family this time to grow
Sure it's been hard he has the scars to prove it
His machines and that g tube how we want to remove it!
He loves to set his alarms off every night
And yank on his tubes to give us a fright
Now he is one he smiles and he laughs
He grabs and he cries and he bites his giraffe
He sits and he stands and even rolls over
He screams and he bangs until mommy comes over
He may still have quite a long way to go
And the whole way we know we'll be kept on our toes
He will never be ordinary this we all know
And before we all know it he'll be on the go
I have no doubt he will continue to amaze
We will ooo we will ahhh at all of his ways
As he shows us what it truly means to overcome
This life he fought for he surely has won
So I say happy birthday to my un ordinary boy
Who has given us worry overcome by joy
What a miracle he is to be here in this world
He has made this "just mom" an un ordinary girl

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