Posts Tagged ‘NICU’

From a gala to the kitchen, Sharing Care is everywhere

Monday, February 4th, 2013

Children’s Lighthouse Homerun Gala

PHS has partnered with Children’s Lighthouse of MN for the past 3 years. We’ve sponsored their annual festival, participated in NovemBEAR and helped to spread the word of their amazing cause. So when we were approached to participate in their first Gala, we jumped at the opportunity. The event took place on January 18, 2013 at the McNamera Alumni Center on the University of Minnesota Campus. The event was MC’d by Brian “BT” Turner of K-TWIN radio (96.3) and there were performances of some scenes from the Ashland Productions “Damn Yankees” that is currently performing at the Maplewood Community Center as well as great jazz music performed by The Reid Kennedy Trio.

The big announcement of the evening was the partnership between The Harmon Killebrew Hospice Home for Kids Fund and Children’s Lighthouse. The late Harmon Killebrew had a passion for children, working with organizations such as the Miracle League, where he was able to share his love of baseball with medically-complex children. In addition to his passion for children, Harmon and his wife Nita felt strongly about the need for hospice care for all ages. Currently, there is no hospice home in the Midwest that focuses on children. Nita sees the Harmon Killebrew Hospice Home for Kids Fund as a way to extend Harmon’s passion for hospice and children by donating to Children’s Lighthouse of MN.

PHS was proud to be a sponsor of the evening and is excited to see the continued success of Children’s Lighthouse of MN and looks forward to the day when the  home is built and can open its doors to a community that truly needs this resource.

Cook for Kids at Ronald McDonald House Minneapolis

What to eat for dinner is quite possibly the last thing on your mind when you have a sick child in the hospital. For that very reason PHS has been partnering with Ronald McDonald House to purchase food, prepare and serve dinner to the families staying at the Ronald McDonald House Minneapolis- inside Children’s Hospital.  On January 25th ten PHS volunteers had a great time serving breakfast for dinner again at the Ronald McDonald House in Minneapolis on January 25th. Over 60 mom’s, dad’s, brother’s, sister’s and grandma’ and grandpa’s filled up their plates with pancakes, fruit salad, scrambled eggs, bacon and sausage. We made sure no one went hungry and look forward to our next time at RMHC in March.

Patient Spotlight: Meet Garrett

Tuesday, October 23rd, 2012

Pediatric Home Service has always lived by the mission of ‘taking care of the child‘, we have made it our goal to always provide the best care for our patients and their families, every single day. In our new monthly Patient Spotlight segment you’ll read stories and see pictures of some very special kiddos and their families. PHS kids truly do thrive and we’re excited to be able to share their stories.

Good things come in small packages: Garrett’s story

We learned that Garrett would be born with Spina Bifida and Arnold Chiari II Malformation during a routine ultrasound when I was approximately 20 weeks pregnant.

After he was born we spent a little over a week in the NICU.  We were home for a week before rushing to the ER, where he was admitted to the PICU for six weeks.

Garrett continues to beat out the odds

Garrett needs frequent suctioning.  He aspirates, so we are very careful about the tastes he takes by mouth.  We have nebs on hand at all times and give them at the first sign of respiratory illness.  We have our PHS Respiratory Therapist, Carrie, in-home nursing to help us monitor him and his pulmonologist is updated weekly, so any change in his health status is quickly addressed.

We are very proud of how far Garrett has come!  We worked with PHS and our team of health care professionals to take him from being on a ventilator 24/7 to only needing it while sleeping.  PHS Dietitian, Teresa helped Garrett transition from not consuming anything orally to taking small tastes of yogurt, pudding, and apple sauce.  The majority of his nutrition is a blended diet through his G-tube, which he handles so well that we have been able to decrease the medication he takes for reflux.  He is walking great.  His speech was delayed, but he has always worked hard to communicate – first with sign language, and now, most people can understand just about everything he says!  He is very smart – he knows his colors, numbers, letters…  I could go on and on!!

Garrett’s favorite things

Garrett loves to play and watch sports – baseball, basketball and golf are his favorite right now.  He plays on a Miracle baseball team in the summertime.  (Garrett’s PHS respiratory therapist, Carrie had a great time cheering him on at his game this past summer.) He also likes to read books, sing, play with Play-Doh, blow bubbles, go to the park, and wrestle with his older sister.

phs, pediatric home service, thrive, homecare, respiratory therapy, nutrition services, spina bifida, arnold chiari malformation II

Left to right: Garrett with his mom, dad and older sister; Garrett walking off the field at the Miracle game after a great inning; Garret with PHS RT Carrie.

The difference of homecare

We first learned about PHS by a social worker at the hospital. When Garrett was in the hospital, our goal was to get him home as quickly as possible, PHS helped make that dream a reality.  Being able to care for Garrett at home means more time together as a family. My husband and I would have to split time between the hospital with Garrett and at home with our daughter. It also allows us to give him more opportunities to be out in the community, so that he can develop socially as well as physically and cognitively.

If you’d like your child to be featured in our monthly Patient Spotlight on the PHS Thrive Blog,  just send an email to dmakerson@pediatrichomeservice.com and we’ll touch base with you for more information and pictures of your All-Star.

What to consider before discharge from the hospital?

Friday, July 13th, 2012

PHS understands what a whirlwind life becomes when preparing to leave the hospital with a medically-fragile child. We met with a few of our experts, PHS Medical Director, Dr. Roy Maynard and PHS family mom and Infusion nurse, Jill Wall, RN, BSN, CRNI as well as included input from the entire clinical team to compile a list of tips for families to consider when getting ready to leave the hospital. Once the process is in place for a patient to leave the hospital and they are stable and ready to go, things can move rather quickly. The tips below will help get you organized and ensure you have necessary information from the hospital staff before you leave, ensuring you won’t have to make extra phone calls to track down information later.

What to consider before leaving the hospital:

  • All contact info on one piece of paper. Ask the hospital for one single piece of paper that has the contact information for your primary care doctor and all the different specialists who will be following your child after discharge, and when to call them. The hospital may give you individual cards, but a single sheet with all relevant contact information is much handier.
  • Interview to find good a good fit. Interview both a DME company and nursing agency before making selections. Find a company you feel comfortable working with. If you know your child is chronically ill and will need long-term nursing care, be sure to ask the agency if they will stay with you over the long term.
  • Train family/friends that will care for the child. Encourage family members and friends to go through hospital training to provide suitable backup when needed. Better yet, identify KEY people who will be in the home consistently staying up-to-date on the care your child needs and how to administer each care.
  • Organize vaccinations. Make sure vaccinations are up-to-date before going home and ask for a copy of the schedule to keep in your personal records.
  • Learn about your coverage. Learn to work within insurance limits or find other payment options. At-home insurance coverage will be different than in the hospital and there will likely be extra expenses not covered by insurance. Contact your insurance provider before discharge for specifics about in-home care for your plan.
  • Learn as much as you can while in hospital. Build your confidence by spending as much time as possible, including overnights, with “care by parent” under hospital staff guidance at the hospital.
  • Get as much sleep as possible the night before discharge. Although we mention spending overnights at the hospital in the point above, try to go home early the night before discharge and get a FULL, restful night’s sleep. Your child is safe in the hospital for one night and you will need and appreciate that uninterrupted night after bringing your child home.
  • Adjust medication schedules to home schedule. If the doctor has not suggested it already, ask if medication/feeding schedules can be safely rearranged to simplify the workload at home (for example, could an infant on electrolyte supplementation go from 4x/day to 3x/day or 2x/day?). While still in the hospital ask to adjust the schedules to the way it will be done at home at least one week before discharge. This will give you and your child time to acclimate.
  • Have your home set up prior to discharge. PHS helps families with high-tech patients sort through equipment and supplies so that you don’t come home to boxes full of unfamiliar products.

And lastly, never feel alone. PHS and the hospital staff are always there to help you through the process of transitioning to home. You can see a full list of tips like the ones above here, where we cover tips for you after you’ve arrived at home, as well as tips to reduce stress and strain on you, and your family. Do you have any other tips or thoughts that you’d like to add to the list? We know the families who have already been through the process are the real experts and we’d love to hear from you!

Blood Drives and Baby Walks

Friday, June 8th, 2012

Summertime brings so many fun events for PHS Sharing Care volunteers. In the past few weeks we have given back by hosting a blood drive here at PHS in conjunction with Memorial Blood Centers as well as by volunteering with the Children’s Hospitals and Clinics Baby Steps 3K. Both events were a great success. See below for more information and some fun pictures! You can always stay up-to-date with PHS activities on our facebook page. Be sure to check it out!

Each year PHS hosts two blood drives in coordination with Memorial Blood Centers. This is the second drive where we’ve added a bit of competition. We now have ‘The Quick Draw’ traveling trophy that goes to the donor with the fastest donation time (SAFELY!!!) Donating was easy and the competition was a ton of fun, we’re already looking forward to our next drive. Thank you to Memorial Blood Centers for making sure our competition is fun, yet still safe. PHS blood drives are open to the public as well. Keep an eye out on our facebook page for sign up information. Drives are held twice a year in May and November!

PHS was excited to be able to participate as sponsors and volunteers for the Children’s Hospitals and Clinics Baby Steps 3K. The event is a way for families with children who have “graduated” from the Children’s NICU to get together, raise money and have A LOT of fun! The event took place June 2nd at the MN State Fairgrounds. With over 1,800 attendees and around $83,000 raised, there were 115 family teams that participated this year. The beautiful weather helped the day go without a hitch!

Faith’s Lodge family shares their PHS experience

Friday, May 18th, 2012

Back in 2007 Pediatric Home Service was lucky enough to come across an organization that we felt perfectly fit our mission and really helped PHS to complete the circle of care for the families we care for, and our partnership with Faith’s Lodge has been growing ever since. Most recently 30 PHS volunteers went to Faith’s Lodge for our annual spring clean-up and cooking event, but there was a fun twist this year.  We were able to combine our annual Faith’s Lodge PHS volunteerism event with the Faith’s Lodge Tree Planting day!

In partnership with Faith’s Lodge Family Outreach Committee, PHS supplied food for lunch and our volunteers cooked and served the meal to all of the hungry tree planters. In addition to providing lunch and serving the meal, PHSers planted the remaining 8 trees that were purchased to help rebuild the forest surrounding the lodge after the storm left the area barren last Fall. It was a wonderful day and PHS was glad to be a part. See below for a slideshow of pictures from the event.

PHS Family Story: The Elias family

While up at the lodge I was told about a family who had used PHS services when they brought their son Brandon home from the hospital. The Elias family shared a small piece of their story with Faith’s Lodge followers in the last e-newsletter. We wanted to pass along the great testament written by Kari Elias, a part of the Faith’s Lodge Family Outreach Committee and a past PHS family. It is such a blessing to everyone at PHS when we are able to help families transition from the hospital to home. Thank you, Kari, for allowing us to share your story.  You can read the story and more of the latest news from Faith’s Lodge in their May e-newsletter here.
Our first born son, Brandon, was born with a rare genetic disorder called Zellweger Syndrome. Zellweger is a disorder that has no cure and most children born with it do not live longer than six months. It causes the body to not produce enough very long chain fatty acid, essentially shutting down the body’s major organs, including the liver, kidney and brain. When Brandon was born, we expected a normal birth, and we were excited to bring our baby home. Our expectations were met with a much harsher reality. We spent 17 days in the hospital, running test after test, trying to determine what our future would hold. It was stressful and scary. Once we were told of our son’s terminal diagnosis, we decided it was time to go home.

We went home to live life and enjoy any moment we were given with Brandon. We learned in the NICU that they would be referring us to a service to help us get supplies we needed. To be honest, I did not even know the company was Pediatric Home Service until after Brandon passed. All I knew was that each week the supplies we needed to care for our son would show up at our home. After he passed away we received a card from PHS sharing their condolences. At that moment, I realized how much I appreciated what PHS did for us. I not once had to think about getting my son’s supplies. They just appeared at the door. At the time, I had no idea what a time-saver that was, and the important gift of time that PHS shared with our family. Brandon Patrick Elias was born on July 19th, 2006. He lived for 2 months and 14 days. He changed our life forever, and we are so thankful to PHS for making every minute count.

Lila’s Story Part III: Home Sweet Home

Friday, January 6th, 2012

We’ve come to part III of of Lila’s story as told by mom, Aimee.  We feel very blessed that Aimme took the time to share her feelings and emotions with our PHS readers about her time on bedrest, in the hospital, and through diagnosis of her perfect little lady. We hope that Lila’s story can help other families in similar situations. Caring for a medically-fragile child is certainly not easy, but PHS is here to help and we truly believe each and every one of these children are born to the perfect parents, just like Lila was with her mom and dad. Please enjoy reading part I and part II of this amazing story and wrapping it up with part III here.

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Once in the warmth and solitude of our home as a new family of three, I waited for life to resume some version of normalcy. I looked for the joy that a new mother is supposed to feel, especially one who has been without her baby for so long, but it was hard to find at first.

Of course we were elated to finally be “on the outside” of the hospital and adjusting to our new lives without the “beep beep beeps” of monitors and the sterile smells of foaming hand sanitizer. But nothing about Lila’s homecoming was easy or “normal,” and certainly not the way I imagined it would be when I sat next to her all those days in the hospital.

The support of phone calls, e-mails and visitors eventually slowed to a trickle and the three of us were left to figure things out. There was the lack of sleep, like any new parent deals with, but the anxiety over Lila’s health and what her future would be like were paralyzing. Fear was a four-letter word that I got to know real well in the recent months and quickly realized once home that it wouldn’t be going away anytime soon. I was in a constant state of limbo seemingly waiting for the other shoe to drop.

I have to take a moment to pause, and point out the services of Pediatric Home Service. It’s not the kind of company you want to get to know … unless you need home-based services for your child. Then, PHS becomes your best friend. Every week the phone would ring and I’d usually have Lila in my arms with 50 feet of oxygen tubing following behind. I’d be greeted with a friendly voice from the customer service department asking if we needed any equipment delivered. Usually we didn’t, but every once in awhile we needed to replace oxygen tanks or return empty ones. All I had to do was say the words and the job would get done. Their system couldn’t be any more fluid and as a mother whose life was in upheaval at the time, I will be forever grateful for that constant.

It’s now been a year since Lila came home from the hospital. Everyone said, “It will get easier,” “This will soon be a distant memory.” I didn’t believe them. But somewhere along the way, things did get easier. I traded in mourning the loss of a “perfect” pregnancy and a “perfect” child for accepting – and celebrating – my daughter for who she was meant to always be, and giving thanks that someone somewhere chose ME to be her mother.

Little by little, the feeding tube went away, then the oxygen, and the medications. It took awhile, but we have adjusted to our new lives, one where therapy and doctor’s appointments still trump trips to Target or lunch with friends. And that’s OK. This is the path we’re on and we’ll make our way. All we have to do is follow Lila’s lead.

Lila is 14 months old and is the happiest girl around. She has brought joy and fulfillment to our lives in a way that I never thought would be possible all those months ago. Yes, she does have Cerebral Palsy, but it appears to be mild at this point and certainly doesn’t define her. She is healthy and shows no signs of long-term damage to her lungs. In fact, she just had her first cold.

We think she’s close to sitting on her own and she loves taking steps while we hold her up under her arms. She could eat raisins and string cheese all day long and she loves radio jingles! In her first year, Lila has “walked” across the Headwaters of the Mississippi, cheered for the Minnesota Twins, painted masterpieces, “marched” in honor of other babies like her, and charmed the hearts of people worldwide.

She is my hero and I wouldn’t change a thing about her. We think she’s pretty perfect.

12 months in 12 minutes from Aimee Tjader on Vimeo.

Lila’s Story Part II: A pitstop, then home

Monday, January 2nd, 2012

Here is part II of Lila’s story as written by mom, Aimee. We posted Part I of this story on Thursday, you can read that post here. Today, Aimee recalls the progression Lila made while in the hospital, and the journey from hospital to home.

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As much as we hoped and prayed, our little Lila wasn’t breathing when she was born. Her lungs were too underdeveloped and she needed a lot of support. The doctors had a hard time finding a breathing machine that worked for her. Their last attempt — a high-frequency jet ventilator — worked.

I don’t remember seeing Lila for the first time. I reached my hand in and touched her (thank God for pictures) but I couldn’t hold her. Once I was able to get out of bed and visit Lila’s room in the NICU, I just stared at her and put my hands on her tiny, fragile body and never wanted to leave. “Is she going to live?” That’s all I wanted to know, but the doctor couldn’t make that promise.

A few days later, Lila had stabilized and it was time for an ultrasound of her brain. Premature babies are at high risk of developing bleeding on the brain, so the NICU does the ultrasounds as a standard practice. On this day, we learned that Lila would not make it out of the hospital unscathed as a result of her prematurity and time in utero without amniotic fluid. She had developed some cystic areas on the ventricles of her brain and was diagnosed with Periventricular Leukomalacia (PVL), a type of brain injury that involves the death of small areas of brain tissue around the ventricles. We were told that PVL affects the motor abilities in children and often leads to a Cerebral Palsy diagnosis, however we were also encouraged by the hope that early intervention and therapies could give Lila a chance for a “normal” life.

With each passing day, Lila grew stronger. Finally on day 12 I was able to hold my baby girl for the first time. She was so tiny. The wires and tubes covered much of her head and face, but I could see her perfect little button nose, her sweetheart-shaped lips and her perfect almond eyes.

The days turned to weeks and the weeks to months. We celebrated every single milestone from Lila moving to an open-air crib to graduating from the NICU to the Infant Care Center and every moment in between. We made every effort to make the best of our time in the hospital, but grew weary from all of the fear and the scared nights, having to watch our daughter fight and endure with each breath, and unsure how to handle the unspeakable grief that our “perfect” child might have a different future from what we originally envisioned.

Lila’s due date passed and everyone was eager to get her home, yet she was still on oxygen and not taking enough from a bottle to grow without a feeding tube. After some back and forth, everyone decided it was time for Lila to go home, however she would continue to need oxygen and a feeding tube.

The next day, someone from Pediatric Home Service arrived to teach us how to use all of the equipment that Lila would be sent home with. I had stayed in the hospital with Lila the night before and was working on an hour or two of sleep and overwhelmed with the reality of finally taking our daughter home. As the PHS staffer went through instructions on how to use the oxygen tanks, the oxygen concentrator, the apnea monitor, and the feeding tube pump, I began to cry and doubt my abilities to handle the things the nurses had taken care of for so long. “What if I screwed something up? What if the equipment stops working?” The PHS staffer assured me that someone would be available to take my calls 24/7 and could even come to the house to check on things. She gave me the confidence I needed to do the job I was meant to do: be Lila’s mother.

After 92 days of bedrest and 69 days in the NICU, Lila finally came home on Nov. 21, one week after her original due date.

Lila’s Story Part I: Over 13 weeks of bedrest and an uncertain future

Thursday, December 29th, 2011

We have a special treat in store for our readers over the next week. PHS mom, Aimee Tjader, has graciously offered to share her story. The story of her pregnancy, birth and coming home from the hospital with their new bundle of joy, Lila.  Today, Aimee recalls the uncertainty she and her husband felt after an unexpected complication at only 18 weeks gestation.  In the coming week we will be posting Aimee’s story in three parts. We will post part two tomorrow and the third the following Friday. Grab your box of tissues and read on as Aimee tells their story.

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No parent can imagine their newborn baby hooked up to tubes and wires, fighting for their lives under a clear glass isolette in the neonatal intensive care unit (NICU). But for some families, the NICU is the best case scenario. It’s for those parents that the NICU is the “house of hope.”

At 18 weeks gestation, I suffered preterm Premature Rupture of Membranes (pPROM). In lamens terms, my water broke much too soon and the outlook was grim. Being my first pregnancy, I was clueless about such a condition. My heart sunk deep into my chest that day when the doctor confirmed I’d lost all of the amniotic fluid providing the protective pool around my baby. “What does this mean? Can’t something be done?”

Nothing could be done. I was told I would likely go into labor within a few days, or I could be admitted to the hospital right then and there to “take care of the situation” that night. I would have to deliver the baby, who obviously would not survive at 18 weeks. Or, in the slight chance that I stayed pregnant long enough the baby would likely have severely underdeveloped lungs (baby’s drink amniotic fluid to grow their lungs), deformities and other lifelong problems.

Trying to soak in this whirlwind of new information, I asked to be admitted for a round of IV antibiotics to ward off any potential infection brewing and for a Level III ultrasound by a high-risk doctor the next morning. I hoped and prayed that night, my first-ever night spent in a hospital, that the amniotic sac would heal and everything would be OK. In my dreams I would leave the hospital, still carrying my child, and get back to life as I knew it before I learned what pPROM was. I envisioned going back to work, growing a big round belly, having a baby shower and perusing the baby section of Target along with all the pregnant women. I’d stand proudly beside my pregnant best friend comparing our bellies for a photo op. And I’d create the perfect nursery with the baby’s name in giant script above the crib. But I never got to do any of that.

After one day in the hospital, I went home and under the advice of my doctors, got into bed and stayed there. We had a plan: I would complete six weeks of strict bedrest at home and once I reached 24 weeks gestation — viability — I would be admitted to the hospital until I delivered the baby.

The days dragged on. And on. Of course I was filled with fear that I would go into labor and everything would come crashing down in an instant, but I laid still in bed only getting up to use the bathroom and take quick showers. Friends, family and co-workers brought groceries and prepared meals, walked the dogs and cleaned the house. The support around us was incredible — it felt like all of Minnesota and every corner of the U.S. was pulling for our happy ending.

At 24 weeks, incredibly still pregnant, I was admitted to the hospital. With every intention of being there for the long haul, I brought the comforts of home: my own bedding, a rug, pictures, even a bedside lamp for cozy reading. I quickly got to know all of the antepartum nurses and all of the perinatologists. I sensed the sorrow in their voices and read the pessimism on their faces when I asked them about my outlook and the chance for a healthy baby. Every day they would check on me growing increasingly surprised that I was still there, my belly getting bigger with each week. I was hooked up to the fetal heart rate monitor twice-a-day and I received weekly ultrasounds, always showing a disappointing “unmeasurable” amount of amniotic fluid.

But I never gave up hope. I took vitamins, drank enough water to fill Lake Superior in hopes of creating more amniotic fluid, and did acupuncture, guided imagery and breathing techniques to keep me in a place of calm so that I could be the healthiest vessel for my baby. I was allowed to go for one wheel-chair ride a day outside, which I often took advantage of to savor Minnesota’s warm summer sun.

After celebrating making it to 31 weeks of pregnancy and seven weeks of hospital bedrest, I began to have contractions. They grew closer together, the baby had an elevated heart rate and I had a fever. The doctor called, feared an infection and said it was time. We would be having a baby that night and she would be here nine weeks too early.

A quick ultrasound revealed the baby still in breech position, so I signed some papers and was wheeled off to the operating room. The room was bright, like in a dream, and freezing cold. My teeth chattered as they inserted the spinal and draped a blue cloth over my belly. A dozen doctors and nurses were on hand for the delivery, plus another handful waiting for our baby in the next room, including neonatologists and respiratory therapists. It was a scene straight out of some thrilling medical TV drama.

At 3:59 a.m. on Sept. 14, 2010, Lila Kalét Tjader arrived weighing 3 lbs. 14 oz. She didn’t cry, but she was beautiful. Tears welled up in my eyes as she was taken out of my sight. I crossed my fingers and repeated under my breath, over and over, “Breathe, baby, breathe.”