| Apr. 26th, 2011 @ 07:15 pm The Linden Fund |
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This is copied almost directly (lightly edited to make sense on my LJ page) from my friend Lesley. Her son Torran was born at 26 weeks. He is a big part of why I run each year in the Linden Fund Run:
"He was born early.
They said he would be paralysed or worse.
Now he's doing his first official charity walk - Torran will walk 1k for The Linden Fund's 4th Annual Pedal4Preemies in High Park, Toronto.
I am so proud to volunteer with this passionate group of people. Recently, when asking for media support to promote the event, I was asked "doesn't the hospital take care of babies?". I felt like answering, why do we raise money for cancer - doesn't the hospital support people who are diagnosed? But I didn't. Instead, I gave a personal reflection on The Linden Fund and how it supports families and infants in the NICU. I've posted it below, if you feel like reading it.
If you understand the need for supporting this growing area of neonatal health (8% of children in Canada are born premature), or if you already know you're going to sponsor Torran and our charity team, then follow the link below to donate through my personal fundraising page online:
http://www.gifttool.com/athon/MyFundraisingPage?ID=1472&AID=1524&PID=193504
(Joel's edit: this is the link for Lesley's fundraising site. My own is posted in an earlier LJ note. Use either one.)
$20 gets you a tax receipt and you can donate to the Canadian NICU of your choice in our service list. If you wish to donate lesser amounts in cash you may do so.
Last year, over 500 people attended and the event was a huge success. This year, our Punchbuggies have expanded to two teams - and we have room for more participants if you're interested!
thank you my SCA friends and family for your positive energies, love and support during our time in the NICU with Torran. Now please Make a Big Difference in Tiny Lives and donate generously so other wee warriors and their families have a fighting chance to survive the NICU as best as they possibly can!!
with much love and humility
Lesley
my blog: http://realwomendrivestick.blogspot.com/index.html
(Torran's NICU journey started March 10 2008)
my pictures: http://picasaweb.google.com/LesleyDonaldsonReid/
Please distribute this email to any persons or lists that would be interested in the event or sponsorship:
I was first introduced to The Linden Fund as a parent, when my son Torran was born three months premature and weighed a mere 2.5lbs (which was big for his birth at 26weeks 6d gestation). He fought to survive for several weeks and the hospital staff did their best to help him through his medical needs. It was incredibly traumatic for me and my husband. We spend three months and a half months in the Neonatal Intensive Care Unit (NICU), then a further month in a paediatric hospital. The Linden Fund (TLF) helped us and our child in ways were didn't even comprehend at first. I hope the following email helps to illustrate some of the ways in which The Linden Fund's contributions promote the health of the child, eases the stress of parents, and provides hope in ways that the hospital alone does not. My stories are not unique, and do not illustrate the full degree of help that The Linden Fund provides.
Annually we contribute $10 000 to $50 000 for each of the NICUs we support. We aim to increase not only the number of NICUs we support, but the parents we reach and the amount of support we can provide. The Linden Fund was created by parents Sam and Lauren Pezzullo as they struggled through the NICU with their son Linden. www.thelindenfund.com
At times, we (TLF) receive direct requests from hospitals, mostly in the form of purchasing equipment (blanket warmers, specialized strollers that can hold oxygen tanks for use in the hospital, or breast pumps for example) or supplies. It's all the little things that make a difference to a parent who is staring at tiny, shrivelled child in a plastic box child willing it to grown strong. Every developmental aid that is provided you want to use because your child faces so many risks for deficits that you want to give it the best possible chance to overcome them. TLF provides many of those developmental aids. Even the linens on the child's NICU bed can brighten your mood or make you feel a little less like your child is a science experiment. The linens the hospital provides are those horrible standard pink and blue reversible swaddling cloths. TLF has provided colour flannel blankets with characters and bright motifs.
The NICU incubator mimics the conditions of a womb, without the fluid. Inside the womb, an infant has their limbs drawn up and their arms held close to the body. If left un-positioned in the incubator, the infant would look more like a splayed chicken than a baby. So, one of the purposes of the positioning pillows we donate is to help provide the infant with a sense of security in their environment of the plastic womb that they have to live in for one to two months. The child is used to feeling the womb around it, with all its limbs tucked up. The pillows help to mimic that. Also, the pillows help nursing and respiratory staff position the life support equipment in such a way that the child isn't being harmed or injured by lines, tubes and wires. Additionally, the pillows help prevent problems with limb development that would otherwise occur because of flaccid muscles (i.e. the body is meant to develop in a certain way, and if the limp muscles hold the
limbs incorrectly, they won't be as functional and the child may require physiotherapy later on to correct development).
Children born prematurely are at high risk for developing bleeding in their brain. My son had this bleed on both sides of his head. Sometimes, as with him, this bleeding causes a blood clot in the head, which then prevents fluid from leaving the brain, making it swell. It's a condition called hydrocephalus. Because of the very high risks of infection, surgery often is not recommended until the child is full term. So parents have the added worry about the size of their child's head, deformity and the effect of increased intracranial pressure. It's a daily nightmare. There are special fluid filled pouches which help ease pressure on the child's head as it is growing in size, helping to prevent deformity. Later on, this can help avoid the child having to wear a skull shaping helmet for up to three years. TLF purchases these pressure-reducing pockets, which are very expensive and used only selectively in the unit. My son's head was the size of a one year
old before his first surgery, at term age, and the fluid-filled pouch helped prevent head distortion (which really eased my worries later on when he didn't need the helmet!).
Once children are well enough, kangaroo care, or skin to skin holding of your child, is encouraged for research supported positive development of infant health. A foldable privacy screens allows parents to hold their child, whom they have been staring at in a box for several weeks, in relative privacy. I once sat with my son for three hours whilst he was hooked up to a monitor and breathing equipment behind a folding screen which I would not have been able to do had not TLF purchased several screens to be used throughout the department. Mothers who are learning to breastfeed their children can do so at the bedside, again in relative privacy. Not all hospitals provide these screens, or have environments that similarly encourage parent bonding. At the hospital where my son had his brain surgery, for example, I wasn't even allowed to stand on the same side of my son's face because it "faced" another child's bedside in their NICU (different from our
"home" NICU). A privacy screen would therefore allow me see my child's face without infracting on the "privacy" of the other child.
When parents deliver in peripheral hospitals, or are unable to come into the NICU for their own medical restrictions, the pictures that the nursing staff capture with a camera and printer port provided by TLF are sometimes the only way that a parent can "bond" with their child. My first image of Torran without tubes coming out of his nose or a breathing machine strapped to his face was taken by such a camera. I saw his face when he was born, but only briefly, and all I can remember was how weak his cry sounded and that his mouth was full of blood. So, too, did TLF give me the happy memory of his first car seat test when I was home sick with a cold. The car seat test is exciting because it feels like the first step towards really going home. On mother's day, the nursing staff took pictures of all the children and made individual "cards" for the mothers. I barely felt like a mother when I was supposed to still be pregnant! But participating in this
ritual of the calendar year helped me have a sense of maternal identity, which strengthenedd bonding with my child. Each Christmas, TLF provides a holiday meal for parents and families who are "stuck" in the NICU at Christmas. Santa attends to give parents the opportunity to have their child's "first" picture with Santa, which they otherwise would not have. During this holiday meal, parents who have been through the NICU come in to give emotional and logistical support.
That's another great thing about TLF which most hospitals do not provide, and if they do, the hospital's influence stops once you leave the NICU. We have a network of parents who have been through the NICU who provide emotional support and hope, not only to parents currently in the NICU (either in person or though our free newsletter) but also beyond that as we face the unique challenges of our post-NICU children (who have higher risks for disability and disorders). When my son was going to have his first shunt put into his brain to treat the hydrocephalus, Lauren came to visit us the night before to wish us luck. I'd never met her before and it was very encouraging to have her take time out of her day to talk to us, meet my son, and lend us her strength for the upcoming day. When his shunt got infected two days later, I was distraught. It happened the day before we were supposed to go home, and all of my dreams were shattered in an instant. After she
found out that we'd been transferred to Sick Kids for further surgery, Lauren came down with Linden and again gave her support at my son's bedside. She also gave him a book that speaks of each of us taking a different path, some being more difficult than others. I still can't read it to this day without crying.
Our fundraiser walk in May is comprised predominantly of children and families of NICU graduates. Last year we had over 500 attendees. My first "participation" in The Linden Fund came during their first annual Pedal4Preemies when my husband and I bought a group of our friends to the walk in honour of our child who was still in hospital on breathing apparatus at the time. It was the first time I'd been able to be outdoors enjoying friends since my water broke at 19 weeks of pregnant, at risk for losing my child. At the walk, I felt safe with other NICU parents and children. I hadn't been able to face normally pregnant and happy friends for some time.
The NICU experience can be so bleak to a parent who does not have opportunity to share other people's positive journeys. Outside of the unit, there is a often a feeling that your child is different and needs special minding, which is something that only NICU parents (and like minded individuals/family members) can understand. Every sniffle could be RSV. A hug could carry pneumonia. Minding milestones is nailbitingly suspenseful, when most parents don't understand how important they are. There are clinics and follow-up appointments, therapies and interventions. All of which remind you that your child is different. Some of which prevent you from doing the "commercial" norm of parenting. I couldn't even attend mommy/baby groups for my son's first year because I was in clinic or therapy with him four to five mornings a week and it was draining. The people who understood that best were the NICU parents. It's a different mindset. It's one of the reasons The
Linden Fund worked with an MPP to officially create a Prematurity Awareness Day on March 19th (in Ontario). |
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