Time To Chill

November 2014
Volume 1

1st Edition of Time To Chill

This is the first of many quarterly newsletters to come. The newsletter will be a great way to connect with everyone near and far and to stay up to date on the "happenings" with FN3. In each edition we will have a feature story, this may be about something exciting with the network, a great family story, an outstanding nurse or physician being recognized for excellence, or simply a note updating on the current status of the study. Please feel free to send in requests and stories to share.

Keep Calm and Cool On

May of 2014 Logan Roach was born at UFHealth Shands at 35 weeks gestational age, three days after a nonreasuring nonstress test and having close inpatient monitoring. This was the scariest day of his mommy's life. At 2 am on May 21st doctors were unable to detect Logan heartbeat so Candi, Logan's mom, was rushed back to the operating room for an emergency c-section. "My beautiful baby boy was having trouble breathing so I was only able to catch a glimpse of him before they rushed him to the NICU." Panic doesn't even begin to describe what the Roach family was feeling at this time. Logan had "taken a hit" at delivery and went some time without oxygen. Logan qualified for cooling therapy which was initiated upon arrival into the NICU by Dr. Weiss. After getting him hooked up to monitors, IV lines placed, and his body cooled to 33.5 C, Dr. Weiss updated the family, explained that Logan would stay cooled for 72 hours and educated them on how this therapy could help save his life. He explained the term "HIE" (hypoxic ischemic encephalopathy) and that it is a condition in which the brain does not receive enough oxygen, this is what Logan was diagnosed with. Logan received one-to-one nursing care in the NICU for the next 72 hours while his body was given the opportunity to heal. On day two of cooling the Roach family was not given good news, Logan was not healing like they had planned, he was not getting better, in fact he was getting worse. The family was told he may not make it through the night and that they should go and visit and sit with Logan. Candi and her family did not leave his side, they sang to Logan, read him stories and prayed for him. The next day he began to improve, his oxygenation was better, and he was back on the road to recovery. "God listened and the prayers were working." Candi stated that no one knew why he got so sick or how and why he just started getting better, he just did. Logan's doctors and nurses fell in love with him as did everyone who met him.

After re-warming there were still bumps in the road that Logan had to battle like being on and off the ventilator, feeding tubes in and out, and learning to feed from a bottle. July 4th wasn't just a day that America celebrated it's independence...Logan and his family celebrated theirs too by going home! They broke free of the NICU and Logan has maintained a clean bill of health since. He is growing right on track, developmentally meeting all expected milestones and bringing so much joy to his family. "The people who were part of his recovery and our support during this will never truly know how much gratitude and love I have for them. The Neuro Team and UFHealth Shands saved my sons life. As a parent this has been a journey that will always be close to the surface and has taught me to have faith and never take a single breath for granted." Candi says that every day with Logan is a blessing and his laughter fills her heart with so much happiness.

Annual State Meeting

This year the annual state meeting was in Orlando and we had a good turnout with representation from many of the network sites. The state meeting allowed for a "meeting of the minds" and provided an opportunity for all members to discuss the protocols, what is working and what needs improvement. The current protocol has since been updated and can be found on the website www.hopefn3.org. We had several guest speakers that included the Bell family who shared a story about their amazing daughter who underwent hypothermia and ECMO, Tonya Walsh who spoke about the board of directors, Joe Sharpe with education on Abbot Nutrition and a wonderful MRI presentation by Dr. Middlebrooks. Grant applications and funding updates were given by Dr. Weiss as well as goals for FN3 for the up coming year.

Next years meeting has been tentatively scheduled for August 1, 2015. Save the date you don't want to miss it. More details on location and times to come.

MRI on HIE :

https://www.youtube.com/watch?v=5epCcTcJ2FE

The "After Party"

72 hours, that’s the magic number. Parents hope and pray for the time to speed by so they can hold, cuddle, feed, change diapers, and eventually go home. We talk to parents, demonstrate how to do things, move their baby around like its second nature...because for clinicians it is. Parents see, hear and touch things in a different fashion. They nod in agreement with everything said even though most of the information is flooding from their brain because they are so caught up with loving their baby, hoping for their baby, praying for their baby. When discharge comes around for babies affected with HIE we assume the parents understand what to look at, things to do, when to call for help, but at times they do not. A recent survey that was posted to FN3's Facebook page and accessed by about 70 parents has indicated that parents are being discharged feeling lost, helpless, left without a plan of action and not understanding the severity of insult that their child may have incurred.

The after party at home seems so exciting; parents are ready to break free of the hospital life that they may forget to ask important questions. When they settle in to reality the panics of the unknown sets in as some babies with HIE have complex cases and require close follow-up as well as a rigorous medication schedule.

As a network we all need to make sure that these kids have a follow up plan, contact numbers for a clinic or specialty physician and appointments/referrals made. Parents need to know the signs of seizure activity and what developmental milestones to look for and what to do if they are not being met. The survey results revealed that parents would like handouts and take home materials. A great website that is easy to navigate for both parents and clinicians is www.pathways.org. Here you can find drop down menus and a baby milestone calendar.

Most infants affected with HIE are at risk for developmental delays so getting them started in therapies early is in their best interest. Its never too early for early steps! Early steps will aid in facilitation of occupational, physical and speech therapy. Each child grows at an individual pace, but research shows that a child's first three years are the most important time for learning. Getting help early puts children on the right path to learn and develop at their full potential.

CELEBRATIONS

This year has been the year of reunions. UF Health put on its first annual Cool Kids Reunion in June and boy did the kids and families have a great time! There were lots of activities such as face painting, balloon animals, crafts, interactive butterfly habitat, musical instruments, Albert the gator and TONS of great food. Over 100 families, friends, and "cool kids" came out to celebrate life and happiness. The event was made possible by the amazing Gainesville community through donations and also by a unique t-shirt made special for this occasion that was sold not only at the reunion but also in the NICU II and NICU III at the hospital. UFHealth plans to continue with the tradition of a yearly reunion with the next event slotted for April 2015.

On November 2, 2014 St. Joseph's Children's Hospital, a member of FN3 Network, celebrated their two year anniversary of the NICU's Therapeutic Hypothermia Program with a total of 30 babies cooled to date. In attendance was their very first cooling baby who will be celebrating his 2nd birthday on November 13th!! He was joined by the family of their youngest cooling baby, just 2 weeks of age. The theme was "Frozen." T-shirts read: Cool Kids-Warm Hugs. "The Cold Never Bothered Us Anyway!" St. Joseph's is grateful for all the education and support from Dr. Weiss and his UF team states SJCH Quality Coordinator Jayne Solomon, ARNP-BC.

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