Feature Thursday — Capturing Hopes Photography and Kangaroo Care

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Families featured in this post share with us a piece of their story and some thoughts on Capturing Hopes Photography in the NICU and Kangaroo care.

 

 

 

 

 

 

 

Topic: Capturing Hopes Photography

Family: Mahlon and Hutch Munn

Honor Health Scottsdale Shea, AZ

 

“Mahlon and Hutch arrived in a surprise 13 weeks earlier and weighed 2 lbs. They battled respiratory problems and there were even instances where they had to be revived via a ventilation bag. They needed blood transfusions for treating anemia and they also overcame infections. Having Mahlon and Hutch to coordinate sucking, swallowing and breathing was a major milestone that led to them being finally discharged after spending 9 and 11 weeks in the NICU respectively. Our little warriors have recently turned 2 and there was whole lot of effort and time put in to make sure they are on the healthy track. Words can’t describe how proud we are of their progress.

 

We were blessed to have photos taken twice by Capturing Hopes during our NICU stay. At the time I didn’t realize how much I appreciated the photos. It is really special to look at the photos now and see just how far our little miracles have come. The NICU journey was full of ups and down. It felt like an eternity, yet when we stepped out of the NICU, it was all worth it.  The painful memories were quickly followed by new memories of our babies growing and thriving. These photos have just become part of their journey.  

 

I truly believe that the photos helped our family and friends to see that our babies were just as sweet and precious as a full term baby. When I shared the photos, people congratulated us. We felt a lot better than explaining why they are still in the hospital. The photos showed that our babies were “normal” even with cords and machines still attached to them and they just happened to need some extra care. Prematurity is such a complicated journey. While the journey was challenging, the photos tell people that there is light and hope for the families experiencing it.”

 

 

 

Topic: Capturing Hopes Photography

Family: Adrien Ricci, Parents Nicole and Chris Ricci

Brenner Children’s Hospital, Winston-Salem, NC

 

Adrien Ricci was born at 29 weeks due to suffering a stroke in utereo and because his mother, Nicole, had worsening preeclampsia. After his birth, he was diagnosed with a grade 4 hemorrhage, but was stable. Unfortunately, 10 days after he was born, his brain started to swell and he was transferred to Brenner Children’s Hospital. He thrived in that environment and went home after 65 total days of NICU living.

 

Nicole advises, “Enjoy everything, write a daily journal and you never can take too [many] pictures of your child laying in their isolate because two years later on a nice Sunday afternoon you have a dino-chicken nugget thrown at your head and a corn cob chucked at freshly painted wall.”

 

In that vein, she thanks Deneen Bryan of Capturing Hopes Photography for taking pictures of their preemie and is using that photography to answer the question she often asks herself, “where did the time go?”

 

 

 

Topic: Capturing Hopes Photography

Family: Shepard Taylor, parents Kerry and Max Taylor

UCONN Hospital, Farmington, CT

 

Max and Kerry Taylor own and operate Provider Farm in Connecticut. Kerry went into labor at 23 weeks during a snowstorm, but life could not come to a halt. Kerry was making arrangements for the business and for a doula in the car ride to the hospital where Kerry was promptly transferred to University of Connecticut in Farmington, an hour away, where there was a NICU.

 

Shepard Taylor was born at 26 weeks and in his 112 days in the NICU, he was intubated, received several blood transfusions and suffered numerous infection scares. His parents believe Kangaroo Care, or skin-to-skin care, is what helped Shepard to get well and helped them to cope with the situation.

 

“Kangaroo care was so important to us. We have some very fond memories of long k-care sessions just snuggling our little guy. Our nurses [were] so supportive of k-care. Our NICU had a k-care marathon to promote k-care (we won!)” Since the Taylors had a farm to run during the week, they would supplement their shorter weekday visits and stay all day and overnight on the weekends in a hospital room, called the “family room” across from the NICU doing Kangaroo Care. “It was the closest thing we could have to him being home.”

 

 

 

 

 

***A huge thank you to our small feature writers, Megan McCaffrey and Sammy Chong.

Feature Thursday — Gaining Strength in the NICU and Being Grateful in the NICU.

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Families featured in this post share with us a piece of their story and some thoughts on Gaining Strength in the NICU and Being Grateful in the NICU.

 

 

 

 

Topic: Gaining Strength in the NICU

Family: Envy Watkins

Mercy Hospital, St Louis, MO

 

I never realized the magnitude of being able to hold and see your baby after delivery, leave with your baby when you’re discharged, have complete control over your child’s care, and feel like a Mom right after birth until I couldn’t experience either one of those things. I learned that a lot of women take full term, uncomplicated pregnancies and a healthy “normal” baby for granted.

Although born less than a pound, my daughter was exceedingly mighty and suffered no brain bleeds and battled no infections! Her name is Envy Watkins. My angel was born at week 25 due to severe IUGR, reverse umbilical cord flow and preeclampsia. She received numerous blood and platelet transfusions. She also received treatment for ROP and needed help in breathing since birth till her discharge. After spending 126 days in the NICU, Envy was allowed to be discharged with a low-flow oxygen device. She is now breathing without any support and has no more hospital stays!

 

Connecting with parents who had the similar experience of an extended NICU stay gave me the most strength to go on. Moving into Envy’s room and staying with her literally 24/7 enabled me to be more involved with her life. It gave me strength to cope with the trauma of preterm delivery. Taking the initiative to decorate her room by turning it into a nursery as opposed to a mundane hospital room was another way to bring me closer to Envy. Monthly birthdays and various accomplishments were celebrated. I knew her medical team well and kept myself up-to-date with her development. All these allowed me to feel more like her mother than a visitor. By participating in her daily life, it brought normalcy and kept my strength to face the battle we were fighting.”

 

 

 

Topic: Being Grateful in the NICU

Family: Fiona and Maya, Emily and Seth Coleman

Women’s Hospital, Greensboro, NC

 

A lot of families would be overcome with sadness and regret at having children fight for their lives in the NICU, but not the Colemans. After bringing Fiona home after 16 days, the Colemans were told that Fiona’s twin, Maya, would need to stay for a while longer. Due to a nurse’s intuition, it was discovered early that Maya was suffering from NEC, which carried a staggering prognosis of a 50-50 percent chance of survival.

 

Fiona and Maya are now 3 and doing great and the Colemans have continually remained optimistic of their time in the NICU. Emily says, “I of course would have rather them not been born 8 weeks early, I wouldn’t change a thing about our NICU experience… My girls are perfect and I 100% contribute their amazing sleep habits and early sleeping through the night due to coming home on a 3 hour NICU schedule! No one wishes for their child to be in the NICU, but I would tell myself to appreciate the ability to recover from a traumatic birth with a full night’s sleep without having to wake up to feed newborns. It might sound awful, but when you are scared to death you have to try and find a silver lining or any bit of positivity to hold on to.”

 

 

 

Topic: Being Grateful in the NICU

Family Name: Kaden Siegel

Rush University, Chicago, IL

 

“Kaden had excellent care during his NICU stay. Although being born very prematurely at 24 weeks 6 days, our little warrior was doing great. He was progressing well, but he became very sick one night and was diagnosed with late onset group B streptococcal meningitis. He had a brain MRI and we were told not to have our hopes high. Kaden’s scan results got us by surprised. Even the doctor could not believe that the results were normal. He came home without health issues and is now growing and thriving!

We have learned a very special gift through Kaden’s NICU stay which is to be thankful every day no matter what happens. We cannot wait to thank Kaden when he is older for all that he went through. God was with us and helped us through this. We cannot thank all the people who prayed for Kaden and our family enough. We are grateful for many things. We had a previous NICU mom send us care package to get us started. We had people make us food and were there 24/7 especially our family. Words alone are not enough to express our gratitude to everyone who has helped us to get through the challenging days.

 

I told myself every day in the NICU that someone else might have it worse. We should not give up because Kaden did not. We are surprised by all the things we have accomplished. I stopped crying and being sad because my son and my 2-year-old daughter needed me. Finally, we made it through the 96 days ordeal in the NICU!”

 

 

 

 

 

***A huge thank you to our small feature writers, Megan McCaffrey and Sammy Chong.

Feature Thursday — Faith in the NICU.

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Families featured in this post share with us a piece of their story and some thoughts on  Faith in the NICU.

 

 

 

 

 

Topic: Faith in the NICU

Family: Madison Garnica, Courtney and Peter Garnica

St. Luke’s Baptist San Antonio, TX

 

Madison’s mother, Courtney, spent 2 months on hospital bed rest before Madison was born at 30 weeks.  During Madison’s time in the NICU, she developed MRSA. Courtney says of the experience, “I lost hope when Madison developed the MRSA infection. The nurses or doctor did not inform me for almost a day and I showed up to the NICU to find my baby back on CPAP and with IVs sticking out of her head. I was devastated. Some back story, I have an aunt who died from MRSA. I thought my baby was going to die from it too. I was so scared and cried more than ever before.”

 

The Garnica family prayed and had faith that God had a bigger plan for them. They also joined Facebook support groups. The NICU helped show Courtney how strong she could be and how determined the babies in the NICU are to survive. Eventually, their hope was restored.

 

 

 

Topic: Faith in the NICU

Family: Kaydence, Kayleigh ODonnell

Location: Forsyth Medical Center Winston-Salem NC

 

“My grandfather who is a preacher always says that there is always light at the end of a tunnel. To me, the NICU journey was like a tunnel and when God puts us through something, there is always light at the end and we will come out of it much stronger than before.

 

My first pregnancy was full term and went well. I thought all pregnancies were like these. When my 30-week twin girls, Kaydence and Kayleigh were born; I honestly did not know if we would ever get to bring them home. Kaydence was on a feeding tube and a nasal cannula while Kayleigh had a face mask forcing air into her lungs and also needed to be treated with light therapy due to high levels of bilirubin. Their NICU stay was 42 and 43 days each before discharging.

 

After the NICU journey, I learn that life is unpredictable and we shall never take things for granted. We should appreciate every blessing we are given. Be grateful and thankful for everything because at any moment it can be taken away. Every storm has a rainbow at the end. When I was feeling worried in the NICU, I thought about the rainbow as God’s promise to keep us safe just like how He kept Noah safe during the storm. Both of my fighters are now three and they are happy and healthy! I thank God for keeping us safe!

 

Have a little faith!”

 

 

Topic: Faith in the NICU

Family: Deryn Poniewaz

 

Erin and Drew Poniewaz weren’t particularly religious people before Deryn was born; yet after her fight in the NICU so heroic that it earned her the nickname “Warrior Princess”, they turned to God, as well as their team of doctors, nurses, therapists and surgeons as a source of hope during their most hopeless moments.

 

Erin said, “Prayer was the biggest source of hope and most profound experience during our NICU stay. We were surrounded by prayer in the NICU and in our daily lives. Drew and I found ourselves in the Chapel of the hospital on more than one occasion, praying for the other families who were in our situation and had felt our pain. Perhaps their stories were more traumatic and tragic than ours, perhaps they had lost a child while ours continued to fight… We prayed for the babies, the families, the nurses and the physicians, that they would have the skills and strength to fight another day… It was almost as if God was present in her room from the moment she was born, you could feel that we weren’t alone. This was our journey and it was chosen for us.” She also wrote of Deryn’s nurses, “You are angels among us and I treasure that you are still in our lives!”

 

 

 

 

***A huge thank you to our small feature writers, Megan McCaffrey and Sammy Chong.

 

Feature Thursday — Hope in the NICU.

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Families featured in this post share with us a piece of their story and some thoughts on  Hope in the NICU.

 

 

 

 

 

Topic: HOPE in the NICU

Family: Hadlee Irene 

Meriter Hospital, Madison Wisconsin

 

“When my daughter Hadlee was taken to the NICU, I knew that she would be safe. I never had any doubts about her ability to survive and thrive, just like I did as a NICU baby. 30 years prior to Hadlee’s arrival, my mother went through a nearly identical experience with me in the exact same NICU. I had been a preemie and all my life I had known that I had the best care in the NICU.  Knowing that, and seeing how I grew into a smart, kind and brave person, gave me hope that Hadlee would be more than perfect.

 

Hadlee was put through a series of tests and heel pricks, but ultimately she had to learn how to suck, swallow and breathe without any support. My husband and I were a great team during our NICU journey with Hadlee. I will never forget the routine that we established. I would spend almost 16 hours every day in the NICU learning about her progress, goals, and how to care for her while he was at work. He would visit during his lunch breaks and join me after work to care for her. The 45 minute drive home each day felt long at that time, but we were determined and persistent.

 

The nurses always said, “When Hadlee goes home, you will need to…” They gave us hope when we needed it most. They did an amazing job in making us feel like part of the care team, teaching us how to care for our special new baby, and preparing us for our parenting adventures that laid ahead. We finally went home after  accomplishing several milestones during a 34-day stay.  Hadlee is 9 months old now. She has made excellent progress and is perfectly healthy and happy!”

 

 

 

Topic: HOPE in the NICU

Family: Grace McCaffrey

Cone Health Women’s Hospital, Greensboro, NC

 

“This time it was an infection and a placental abruption that caused me to deliver my daughter, Grace McCaffrey at 33 weeks. I felt hopeless and angry, but I thought about my son, Patrick McCaffrey who was born prematurely at 32 weeks two years ago. Seeing how he has grown to be a healthy and happy toddler inspires me to hope and persevere through Grace’s impending NICU stay.

 

The NICU staff were professional and caring and the familiar faces from Patrick’s stay were comforting. It made the dreadful NICU stay more pleasant. Friends and family’s kind words, prayers and child care during our visit to the hospital helped us make it through this journey. Both our children have displayed strength throughout the NICU stay and have inspired me to hope.

 

“Maybe it will be easier this time since you know what to expect,” people said. The truth is it has been harder being a stay-at-home mom. It is hard to juggle time between the child at home and the child in the NICU. My husband and I are trying our best to make it work. I am glad that we are a team and we have become even better having a child in the NICU. Knowing that we can work as a team to make things work gives me immense strength. By sharing this, I hope other NICU families can at least know they are not alone in this particular struggle.”

 

My little miracle will be 4 months old soon and  is doing very well! She is already on the growth scale used for term infants. My preemies are truly my inspiration.”

 

 

Topic: HOPE in the NICU

Family: Ella Jane Sawyers, Taylor and Andrew Sawyers, Mount Airy, NC

Brenner’s Children’s Hospital, Winston-Salem, NC

 

One of Taylor Sawyers’ favorite quotes is from Willa Cather, “Where there is great love, there are always miracles.” Ella Jane Sawyer must be very loved indeed.

 

Ella Jane’s pediatrician made the call to send her to transport her to Brenner’s Children’s Hospital because of respiratory problems. After only a few days, the Sawyers’ “whole world came crashing down.” She was diagnosed with an often-fatal-in-infants infection that was attacking her brain and central nervous system. But Ella Jane survived and 28 days later when they brought Ella Jane home, there were no signs of damage in her brain.

 

Friends and family’s thoughts and kind words as well as chronicling Ella Jane’s experience through pictures kept the Sawyers’ hopes up. “When you feel like you just don’t have it in you any more, and someone says something, even if it’s something simple, it gives you hope,” Taylor says. They also read a book to her in the NICU called Wherever You Are My Love Will Find You by Nancy Tillman.  In the book is a quote that reads, “You Are My angel, my darling, my star… and my love will find you, wherever you are.” It did, and after 6 months of antivirals, Ella Jane is vivacious and healthy one-year-old.

 

 

 

Topic: HOPE in the NICU

Family: Sylvester James Cofoni, “SJ”

 

Sylvester James Cofoni, called SJ, was born at 30 weeks. SJ was put on a CPAP for 2 weeks, had a feeding tube for 8 weeks, was fed exclusively with a Haberman bottle and underwent hernia surgery during his 10-week stay in the NICU. He was released on his due date.

 

His mother, Jess, advises other NICU families to learn as much as they can and be as involved as possible with their child’s care and to take pictures. The Cofonis look forward to the day they can show SJ the pictures as an illustration of how strong he is and how much he overcame.

 

Jess says of keeping the hope alive,“the things I did to help my NICU journey were pumping & learning all I could about preemies. I didn’t have any strong plans on breastfeeding, but it was the only thing I could do for him that no one else could. When I saw him gaining weight so well and thriving, I felt good to be able to do that for him. I also made it my job to be in the NICU as much as possible… I felt like a better advocate for my son. I also joined groups on Facebook and Instagram for preemies… where I could relate to other families and know I wasn’t alone.”

 

 

 

Topic: HOPE in the NICU

Family Name: Aiden Toler

New Hanover Wilmington, NC

 

“I was only 19 when Aiden was born on Thanksgiving. The doctors were scared to tell me everything about Aiden, but I did whatever I could to prove that I was just as strong as he was. Although our little warrior was being born very prematurely at 25 weeks, he is the strongest and most determined person we have ever met. He suffered a grade 3 intraventricular hemorrhage, urinary tract infection, pneumonia and collapsed lung during his first week. The doctors were not confident that he could make it, but our miracle surprised us by making progress! It was amazing to find so much strength in a baby so small.

 

Aiden kept me going every single day in the NICU by showing us miracles do happen. He taught me that where there is a heartbeat, there is hope! I will never forget what a pastor told me when I had doubts about Aiden’s future. “God knows everything. He knows our lives before we could ever make it to Earth. If He decides to take your child home, think of all the sufferings He would be saving him from,” he said. There were days where I felt I could not bare the weight on my shoulders any longer, but I knew I should not give up hope. I wanted to see him smile for the first time. I wanted to be there when he muttered his first word and took his first step.

 

I knew Aiden was born for a reason. He is the inspiration to other NICU families. I share Aiden’s story to help spread awareness about children born prematurely and with special needs. Aiden still face several medical conditions, but he truly is a fighter and I am so proud to call him my son.”

 

 

 

 

 

***A huge thank you to our small feature writers, Megan McCaffrey and Sammy Chong.

 

Day Twenty-nine: Riley Wright

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In October 2009, I was diagnosed with Prolactinoma and was told that the treatment would cause infertility. During the time after diagnosis I was put on medication and followed by MRI’s every 6 months. In February 2011, I went in for a physical and as usual was told I need to lose weight. I decided to start weight watchers and I felt great. I had no noticeable changes, my energy level was still the same and I even loss 41 lbs during that time.

 

 

On September 4th 2011, I went for a four mile walk with my mother completely unaware that I was 24 weeks pregnant. After working out, I went for a shower and after terrible unexpected cramps, I delivered Riley on the floor of my bathroom. He was 1 lb 4 ounces. The medics arrived and could not find a pulse. Once they placed his tiny body in a bag, Riley started to move. The staff of Southern Regional were pivotal to Riley’s survival. He was in NICU for 101 days. During those days, he experienced daily seizures but still found a way to defy all odds. He never had any brain bleeds even though that is typical for a child born at that gestation. 

 

 

On December 14th weighing 4 lbs, 7 ounces, Riley was given the green light to come home! Coming home was terrifying but with family support and awesome friends, I somehow made it work. Unfortunately, Riley’s premature birth had consequences. His lungs were under-developed requiring him to need an oxygen tank. He used supplemental oxygen for about 3 additional months. The longevity of the use of the tank affected the development of Riley’s eyesight, he had laser surgery on December 28, 2011 and now wears glasses. He was diagnosed with Spastic Quadriplegic Cerebral Palsy at 11 months. Most that receive this diagnosis experience lack of control with all limbs including their head as well as trunk support.

 

 

 

 

 

 

 

 

 

Riley’s premature birth also affected his digestive system. At 15 months, he was diagnosed with “failure to thrive” a pediatric feeding disorder. Children that suffer from this are not able to consume adequate amounts of solids or liquids to sustain growth. The treatment is a feeding tube implanted in the abdomen for a primary source of nourishment. In addition to the feeding disorder, Riley also had an oral motor dysfunction which prevents him from swallowing voluntarily.

 

 

Throughout the years, we’ve had a series of swallowing studies done to prove that Riley could not safely swallow. Currently, Riley is 6 years old, he still uses a g-tube (but he has learned to swallow and has been cleared for soft purees) he is wheelchair bound and wears AFO braces to help with his tone. Riley has an infectious smile and continues to bring joy to all of those that come in contact with him. 

 

 

 

 

 

 

 

 

 

 

 

 

Writer Info: Wright family story written by mom, Kristi Thomas.

 

Katey Penton, a portrait and wedding photographer, is based out of Atlanta, GA. She has been photographing precious life moments since 2010. After working with special needs students in her previous career, premie babies hold a special place in her heart. In her free time you can find her chasing her own three little ones around! See more work at www.kateyp.com and on Instragram @kateypentonphotography

Day Twenty-seven: Trenton Hazelgrove

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Every day was a small victory for the Hazelgrove family during their son’s arrival and NICU stay. Leah and Shawn were happy to be expecting their second child when Leah became deathly ill during her pregnancy. Her doctors, at the time had no clue what was wrong with Leah but she delivered her son at the Naval Air Station Jacksonville at 32 weeks pregnant. The hospital was not prepared to handle either one of their medical needs so Leah was sent to Shands Hospital and their new baby boy was sent to Wolfson’s Children Hospital.  Both hospitals had room for one more, but not both mother and son.

 

Everything happened so rapidly for Leah and Shawn. They had not prepared for him to be born so soon and so fast. Right after he was born Leah did not even get to hold him before he was rushed away quickly to the NICU ambulance. She was devastated watching him be rushed out of the room. She had no clue what was going on with him, or herself, or when she would ever see him again.

 

Leah was in dire need of medical attention after delivery. It took her doctors two days after delivery to figure out what was wrong with her. The doctors told Shawn and Leah that she had developed HELLP syndrome, a potentially lethal liver condition and post preeclampsia. HELLP is identified as Hemolysis, Elevated Liver enzyme and low platelet count. It is extremely dangerous to women if not caught in time. Leah received two blood transfusions as her platelet count had dropped to 21,000.  A normal, healthy person has around 150,000 or more.  Due to the lack of blood in her eyes Leah lost part of her vision and didn’t regain it for 6 months after delivery. HELLP is a rare but, potentially deadly condition that is often misdiagnosed. Some women have high blood pressure and protein in their urine, others pain in the upper quadrant of their abdomen. Leah showed no symptoms up until she became ill and sought medical attention immediately.

 

Right after their son was born mother Leah began to pump.  It was her way to feel like she was helping her child. Around the clock, every three hours Leah pumped. No matter how tired or ill she felt, she fought hard to achieve her goal to help nourish her new baby. It seemed to work, day by day Shawn and Leah watched as their fighter of a boy got through each and every obstacle in his way. It gave Leah something to hold onto to get her through her hospital stay. Shawn would update Leah daily on how much weight he was putting on each day.  On the ninth day after her son was born, Leah, suffering in another hospital was allowed a two-hour window to go and meet him. Her husband Shawn had hung photos up in her room and video messaged with Leah but, nothing compared to that joyful moment of her new baby boy being placed on her chest.  Leah had to return to her hospital after the brief visit.  The visit gave Leah the strength she needed to finish out her own hospital stay, and after 11 days she was released from the hospital.

 

 

Since their son had arrived so fast Shawn and Leah did not have a name picked out but, had some inspiration to choose the perfect fit. The new parents taped a photo of George Washington crossing the Delaware river by boat in the battle of Trenton, New Jersey in 1776 to the outside of their sons’ cradle. They were inspired by the bravery of the Americans fighting for independence in the city of Trenton. The men who fought for American freedom were not sure what the outcome would be but, they continued to fight. The battle was a small victory and essential to the bigger picture. The small victories were what kept them going through each day. Shawn and Leah found hope in the little victories of their baby gaining a few ounces of weight every day. They remained focused on each small moment, knowing that they were all headed towards the bigger goal.

 

The doctors told them early on not to ask when Trenton would be able to go home, but to watch his progress and see the many tubes and monitors slowly come off.  The doctors told them when you see him without any feeding tubes, monitors, IV’s and he is eating on his own out of a bottle, then it will be time to go home.  At first that was a hard thing to hear, but overtime the tubes and wires slowly came off, and Trenton was able to eat on his own.  The doctors were honest, and up front.  The Hazelgrove’s knew the goals up front for recovery, and each one was a victory.  About half way through Trenton’s recovery in the NICU, he was moved to a more private room instead of an open bay.  The doctors allowed Shawn and Leah to give Trenton a sponge bath several times.  They spent as much time as possible with Trenton, and slowly the nurses and doctors allowed them to start to take care of him in the hospital.  The more they were able to interact and take care of him, the better Leah was able to recover as well.

 

Shawn, who is on active duty in the Navy had to leave for a few hours one day while both mom and baby were in the hospital. He left to reenlist a sailor and everyone was shocked to see him back to work so soon. During the reenlistment Shawn told the story of the Battle of Trenton. The story showed true sacrifice and courage. As much as Shawn wanted to be with his family he still felt a sense of duty to follow through with his job. The time away allowed him to gather things that made sure Leah and their son felt at home in their hospital rooms. He brought blankets and printed out photos to hang in Leah’s room. He would video message with Leah while he visited the NICU, until she was able to be there herself.

 

Trenton Hazelgrove was a surprise, quite like the battle and has never give up fighting. He entered the world at 4 pounds 2 ounces and only had one functioning kidney.  That hasn’t slowed him down one bit.  He loves to run and play with his older brother Garret. Garret didn’t get to meet his brother during Trenton’s month long NICU stay because he was too young to go inside the NICU.  Thankfully Shawn and Leah had wonderful family support that helped them watch Garret and brought over food. The incredible support from family, friends and total strangers gave the Hazelgrove’s an indescribable amount of hope in their darkest hours.  Thanks to the vast number of people helping and praying for them and the family’s undeniable courage they live a happy life with two amazing boys. In the Hazelgrove house, every day is a small victory in life with their happy boys running around.

 

 

 

 

 

 

 

Writer Info: Bailey family story written by Heather Scherer. Heather is a bereaved mom who gives a lot of her extra time to helping others. She hopes to prove her angel Adalynne proud each and every day. Visit her blog at http://mylittlewarriorbaby.blogspot.com/

 

 

 

Photographer Amber Moore resides in Kailua, Hawaii and specializes in family and newborn photography since 2014.  Amber is a military wife and Mommy to 3 boys and spends a lot of her time out on adventures with them.  Find her business website at www.ambermoorephotography.com or on Facebook at https://www.facebook.com/ambermoorephotography7/

Day Twenty-six: David Loehlein

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Julia Loehlein was enjoying her pregnancy with husband Philip, up until 25 weeks.  She began having, what she was told by a nurse was extreme heartburn. Julia had never had heartburn before her pregnancy so she trusted the nurse and tried taking some antacid tablets. She went on for several days dealing with an excruciating pain above her rib cage before she scheduled an appointment with her doctor to figure out what was going on.  They checked her blood pressure and it was high but, the doctors said it was more than likely her inability to deal with the heartburn causing her stress. They told her to get an over the counter medicine of a different antacid medicine then set her home.  The new pills did nothing for Julia, she continued to lose sleep at night, pacing the halls in pain.  She dealt with the burning for a few days before going to the emergency room, the doctors once again left her with no answers. Julia plead with the emergency room doctors that something was seriously wrong but, no one believed her. She once again had a high blood pressure and now, had blood in her urine. They gave her no answers, simply told her to take an over the counter medicine then, told her to follow up with her OBGYN.

 

 At Julia’s follow up with her OBGYN she told them all her symptoms, they checked her blood pressure did some blood work to finally get to the bottom of what was going on with Julia. Her doctors thought she was having gallbladder issues so, an ultrasound was scheduled, two days later. Once the blood work came back and the ultrasound was complete Julia received a call from her OBGYN telling her to head to Labor and Delivery immediately. Her and her husband Philip thought they would just be coming to be monitored overnight and then sent home the next day. That wasn’t the case.

 

The doctors took more blood and, ran more tests. and then, walked in to tell Julia and Philip, Julia was going to deliver the baby, that afternoon. They were stunned by this news.  Julia was only 27 weeks along in her pregnancy. The tests had come back and Julia had Class one HELLP syndrome, delivery was the only way to save her life. Julia’s mind was racing with questions but, everything happened so quickly after the doctor diagnosis. The room swarmed with nurses, prepping Julia for surgery so quickly she barely had time to process what was even happening. She was told her organs were failing and that, the pain she was experiencing was from her liver. Her platelets were only 36,000, she needed a transfusion of plasma and platelets stat. Julia’s life could’ve been taken in a matter of hours if they didn’t deliver baby David immediately.

 

Julia and Philip had to separate when she went back for her cesarean, he wasn’t allowed to go back with her and she had to be put under general anesthesia. The nurses tried to prepare Julia since her case was so bad that she may wake up in ICU but everything would be fine. Suddenly, Julia’s mind stopped and a steady calm washed over her right before surgery. She put on a brave face and headed into surgery, trusting the team of doctors and nurses to take care of her, and her very early baby.

 

 

It felt like a blink in time to Julia and she awoke to “Mrs. Loehlein, you did great! It’s a boy!” David Loehlein was born at 4:37 p.m. and weighed 2lbs 7oz and was 14.5’’. He was little but, he was mighty. Julia’s mind was so foggy from all the drugs she was on after surgery and the intense trauma that the first time meeting her son she was really couldn’t process what was happening emotionally. She continued to be monitored and kept on a magnesium and dilaudid, leaving her numb to her surroundings.  

 

A doctor greeted Philip and told him he was a proud father of a 1100 gram “peanut.”  Philip immediately turned to the internet to research about his new 1100 son. He did not like the finding after a few internet articles. He decided to trust the amazing hospital and NICU nurses and focus on his own baby’s achievements.

 

 

24 hours after delivery Julia’s platelets had increased so much she was able to be moved to the hospital wing for after childbirth. Julia was taken off the pain meds and began to emotionally process what had just happened to her and, her little family. The tears hit her like a dam breaking free, she cried for several days. She scoured the internet on what HELLP syndrome is and how incredibly dangerous in is to expecting mothers. HELLP is an easy abbreviation for its list of symptoms. Hemolysis, which is the breaking down of red blood cells, EL stands for Elevated Liver Enzymes and the LP is having a Low Platelet count. This syndrome is often mistaken for other issues causing numerous women to have fatal outcomes. Thankfully Julia trusted her instinct that something was seriously wrong and pursued medical attention multiple times. She saved her and her David’s life.

 

David most certainly got some of his mother’s strength. He got to lay on his mother’s chest for the first time after 8 days of being in the NICU, he did amazing. For Julia, that first time was a sweet moment of relief. The past weeks had been a rollercoaster for her and Philip. Her heart ached watching his body surrounded by tubes and cords. Holding him was a small victory in the many to come.  Philip and Julia dreaded leaving the hospital without him. In spite of that fear, they focused on each day.  One of the NICU nurses told Philip the NICU was a rollercoaster, each baby has its ups and, its downs. That phrase stuck with the Loehlein parents. If David had a bad day it was okay because, it was just a temporary dip in the rollercoaster.

 

David soared through the rollercoaster ride of NICU, there were several low dives but he always came right back up, fiercer than the last night. He spent 95 days in the Chester County NICU until he finally made his way to home, sweet home. Once home David had a stationary oxygen compressor, his oxygen had to constantly be monitored. The Loehlein family figured out a new way of life with David, it was scary and rewarding.

 

David went back to the Chester County NICU for checkups every 6 months, he graduated from their follow-up a year ahead of schedule. He had early intervention therapists for both speech and physical therapy, he did so well they stopped at 18 months. He is a happy and determined little boy. The NICU rollercoaster hasn’t stopped him one bit.

 

Julia and Philip are thrilled to be parents to such a curious little one. They fought extremely hard to survive the sudden change to their family plan. Luckily Julia’s resilience to seek medical help saved her and her son. David is just a happy little boy, loving life with his wonderful parents.   

 

 

 

 

 

 

 

 

Writer Info: Bailey family story written by Heather Scherer. Heather is a bereaved mom who gives a lot of her extra time to helping others. She hopes to prove her angel Adalynne proud each and every day. Visit her blog at http://mylittlewarriorbaby.blogspot.com/

 

 

 

Sarah Boujais founded Rosechild Photography in the Philadelphia area in 2011. She has been documenting family love stories ever since, specializing in newborn and family portraiture. Sarah’s own twin boys were born prematurely at 29 weeks & 2 days in 2008, spending 6 weeks in the local NICU. With that personal experience, Sarah developed a passion for providing NICU photography sessions and is honored to be a volunteer for Capturing Hopes Photography. You can find more of Sarah’s work at www.RosechildPhotography.com or follow her Facebook page at Facebook.com/RosechildPhotography.

Day Twenty-four: Dylan Franklin

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When Paige and Dedrick were married in October of 2015, they knew having kids was something they both wanted. They both came from large families and having a kid was the next step in their happiness.

 

After five months of marriage, a pregnancy test confirmed that in December they would be parents! During their first appointment and ultrasound, the tech kept saying how she had never seen a baby be implanted so far to the side. Once they saw the gynecologist, worry and concern began to set in. They were told that the pregnancy may be ectopic, implanted too close to the fallopian tubes, and they should prepare for the possibility of termination. Luckily, after meeting with a maternal fetal medicine specialist, they found out the pregnancy was, in fact, viable and the gynecologist had been wrong. On her next appointment, Paige was diagnosed with gestational diabetes. After trying a change in diet and a small dose of medicine, she had to be placed on insulin and administer it to herself four times a day. This regulated her blood sugar and things were finally going well.

 

At her 18-week checkup the baby was measuring two weeks behind and during the exam to check for chromosomal issues she was diagnosed with a blood disorder called anticardiolipin. This put Paige at a higher risk of blood clots. She was then put on another medicine to help prevent this. The hope was that this medicine would help the baby start growing. After nothing seemed to help, and after doing her own research she discovered that she had IUGR (Intrauterine Growth Restriction). At every appointment, she became more and more discouraged as she was told time and time again that her baby would most like not survive in utero. Paige’s mother would remind them, at every appointment, that God was bigger than this and only his plans mattered.

 

At her 26-week check-up, a nurse practitioner came in and informed them that there was no fluid left and that their precious baby would not survive the week.

 

 

Paige could not understand how this could happen. Every day she could feel him kicking and rolling around inside of her. This baby boy was strong and she refused to believe that he wouldn’t survive. The following week they returned to find the baby’s heartbeat just as strong as it has ever been and he was finally weighing a viable weight, 500 grams. This was finally the little hope that they had been needing. They were sent straight to the hospital and Paige was put on strict bed rest. She was hooked up to a magnesium drip, given steroid shots and prepared for an upcoming c-section.

 

 

On Saturday, September 17, Dylan James was brought into the world weighing 390 grams, 13.9 oz.

 

The first few days were great. Dylan was hooked up to the ventilator, but on the day that Paige was discharged he had to be put on the oscillating ventilator because he could not stay oxygenated.

 

That ventilator became his lifeline and he stayed there for a month. Dylan soon developed an infection from being on the vent and had his first transfusion. He eventually moved back down to the traditional vent and then onto a CPAP. He did so good on CPAP, that the next day he was placed on a high flow cannula. He was finally able to be held. This is such an amazing feeling as a NICU mom.

 

 

Dylan seemed to be growing well and gaining weight at a slow but steady pace but was still too small to be out of the incubator. Over the next few months, he was given a PICC line and more transfusions and had to deal with a distended stomach and apnea spells. When he was finally moved to an open crib he was able to get his first bottle feed. He was a great eater but it was soon discovered that he had reflux due to his premature birth. That began a long three-week process of finding what formula and medications would help control it. Dylan spent most of the rest of his time being held and loved on by the NICU nurses. At this point, he had been there for 3 months and had already gone through the circulation of nurses twice. Dylan finally came home after spending 135 days in the NICU.

 

 

Today he is a wild, loud, and crazy 11-month-old weighing around 14 pounds. He’s crawling, cruising around furniture, and screaming all the while. He is still taking medication for his reflux and seeing GI once every 3 months. He’s also in physical therapy.  Paige says “It was a struggle to get him here but he is our biggest and greatest blessing. I thank God that I never lost hope and faith in our baby boy.”

 

 

 

 

 

 

 

Writer Info: Franklin family story written by Tonya Nelms.

 

 

 

Photographer Courtney Edwards resides in Memphis, Tennessee and has specialized in newborn and family photography since 2013. Courtney’s daughter was born at 35 weeks, weighing 4.10 lbs, and spent 10 days in NICU, making the NICU a place that is near and dear to her heart. Find her business website at www.courtneyedwards.com or on Facebook at Facebook.com/courtneyedwardsphotography  

Day Twenty-three: Eli Poblocki

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When you look at Eli now, it’s hard to believe how hard he had to fight during the first months of his life. With a full head of auburn curls and a glowing smile, he is catching up on milestones, charming friends and family, and interacting with the world around him – even the family dog. He is a healthy, normal little boy who happened to start life as a micro-preemie.

 

After three years of failed fertility treatments and two miscarriages, they had finally made it to what felt like the safe part of Elaine’s pregnancy. They had a scary start with this pregnancy as well when they thought they were also having another miscarriage at 7 weeks when Elaine started bleeding. Thankfully, an ultra sound proved everything was fine at the time. Twenty-one weeks into her pregnancy, Elaine and Patrick Poblocki were just starting to relax. Doctors were pleased with Elaine’s health, and she was just barely beginning to show. At 21 weeks, they visited the doctor for an echocardiogram – a routine practice for babies conceived via IVF – and that’s when their world turned upside down. Doctors gave them the devastating news that Elaine was already dilated and completely effaced, and the next weeks were filled with bedrest, hospital stays, and worry as doctors tried to keep her from delivering their son.

 

Elaine anticipated spending months in the hospital, and even invited a friend to teach her to knit while she passed the time. That knitting lesson never got finished – and her friend got a hands-on lesson in being a midwife. At just 23 weeks, Elaine was rushed to an emergency c-section. The doctors chose to put her completely under for the delivery, and she had to find out after the fact that her son was able to cry when he was born. When she and Patrick finally got to see baby Eli, he hardly looked like a baby. Tubes, wires, and goggles covered him inside the plastic isolette. It was hardly the journey to parenthood that they had envisioned. Without much opportunity for physical contact, Elaine found that it took her quite some time to actually “feel like a mother”. After all, she couldn’t do the things that new moms traditionally do. In fact, she was actually very ill herself, battling an extensive infection that doctors discovered after delivery.

 

The one thing she could do – and the one thing that helped her feel like a mom – was pump. Breastmilk was deemed to be the best possible nutrition they could provide for little Eli, so Elaine rallied and started to pump. She kept a newborn schedule – pumping every three hours around the clock – for six long months, ultimately producing enough milk to nourish her son and two other babies. While the schedule was brutal, it was often the only physical way for Elaine to mother her son, and she found it tremendously healing.

 

 

 

Meanwhile, Eli encountered one hurdle after another. Each treatment seemed to bring other unintended consequences. At one point, he sustained damage to one of his vocal chords, an injury that doctors suggested might delay his speech. They also promised that eating would be a challenge, and in the world of the NICU, where parents rarely receive an absolute statement, that one proved to be true.

 

In fact, Eli’s nourishment was Patrick and Elaine’s final hurdle as they fought to bring their son home. He simply couldn’t get enough to eat without external support, and the doctors felt it was time for a g-tube – a tiny valve that would deliver nutrition right to his stomach. Elaine in particular struggled with this decision. It destroyed her to think of putting this piece of medical equipment in her perfect baby boy. She worried that it would impede his development, and prevent him from becoming what she wanted most for him: a normal little boy. Ultimately, it became clear that in spite of a rotating schedule of cuddlers, the NICU just wasn’t developmentally appropriate for their not-so-little baby. Once the g-tube was in place, they were finally free to return home as a family of three.

 

Not that life settled down. They literally did not sleep the first night they were home. They stayed busy setting up IV poles to help hold his feeding pump and assembling medical equipment – at some point during the night Eli’s pump quit working. Fortunately, they were able to “fix” the pump well enough until they could get an emergency replacement. Every three hours, Eli needed to be fed and Elaine needed to pump, and by the time they finished all of Eli’s medical care, it was time to start over again. On top of that, Eli maintained a laundry list of appointments with one specialist or another. It was exhausting and overwhelming, but slowly Eli began to outgrow his necessary supports. One by one, medications were discontinued, and doctors began to check in less frequently. Patrick and Elaine learned to look forward to these milestones as gifts.

 

Having a child in the NICU is an overwhelming experience. In the midst of everything, Patrick and Elaine never lost sight of their ability to function as a team. They made time for little dates – things like grabbing a Starbucks on their way into the hospital or watching marathons of HGTV together while Elaine pumped. Since both of them like to be active, they made of a point of making sure both parents were able to walk the dog, run, and exercise as needed. And as Elaine has grieved some of the things she missed due to Eli’s premature birth – the experience of feeling and looking pregnant, getting to exclusively breastfeed her baby, hearing her son’s first cry – it’s Patrick who has reminded her that the goal wasn’t a pregnancy. The goal was having a child, and they have done that together.

 

As Elaine and Patrick reflect on Eli’s journey, they emphasize the importance of taking one day at a time. For the parents of a preemie, the future begins to look like a gauntlet of unknowns. Doctors throw out worst-case scenarios and dwell on unknowns. Other families in the NICU experience setbacks. It’s hard for parents not to look around and be terrified. In order to avoid becoming overwhelmed, Elaine opted not to join a micropreemie support group until after they took Eli home. Instead, Elaine and Patrick focused all their attention on the moment at hand, and it helped them maintain their sanity through the hard months. When Eli was on the ventilator, they focused on doing the best they could as the parents of a baby on a ventilator. When he got the g-tube, they focused on doing the best they could with that. When he finally came home with IVs and medical equipment, they threw themselves into Eli’s medical care.

 

In addition, they learned to rely heavily on family and friends. Even in the early rounds of IVF and during Elaine’s miscarriage, their employers and co-workers surrounded and a supported them. While Elaine was recovering, and when she had to return to work in order to save her FMLA for Eli’s return home, both sets of grandparents stepped up to the plate, spending long hours in the NICU, meeting Patrick and Elaine for weekly lunch dates, and helping them manage the demands of caring for a preemie. Friends took the time to be trained to be Eli’s NICU cuddlers, and their community created a GoFundMe that allowed Elaine to take an additional year off work to continue caring for Eli.

 

 

And Eli is thriving. Against all odds, he is meeting developmental milestones and closing the gap between his actual and adjusted age. He still works hard at feedings, and he still has milestones to catch up on. But at a recent doctor’s visit, his pediatrician told Patrick and Elaine that “other than that piece of plastic in his stomach, your kid is boring.” After months of just wanting a “normal” baby, those were the best words they could have heard.

 

Elaine and Patrick, meanwhile, find that they are so much more grateful for the little things. They unapologetically rock Eli to sleep every night. They are more patient with messes and noise. Elaine is thrilled to get up with her son instead of the pump during the night. They are much more tolerant of the hard parts of parenting. They willingly give up their time – and their sleep – for their son. Things that might be daunting to the average parent are routine to them.

 

Still, Elaine wants to make sure her son isn’t defined by his early delivery. So many people were convinced tiny Eli would “have problems”, but as time has gone on, he’s made it clear he won’t be defined by statistics. He now enjoys table foods and a sippy cup, he just doesn’t get enough volume to meet his liquid needs. He’s becoming mobile, crawling super fast and took several steps independently. Eli can even climb up and down the stairs. The birth to three recently gave him credit for having 25 words!! He made it through cold and flu season with only one infection and one head cold. It’s very likely that his premature delivery won’t have any lingering effects.
Eli’s parents can tell you about a lot of amazing things: the community that showed up to care for them when they needed it, the medical science that helped their son survive and thrive, the doctors and nurses who cared for him in the NICU. But Eli himself is the most amazing part of the journey, and he’s made everything else worth it.

 

 

 

 

 

 

 

Writer Info:  Poblocki family story written by Laura Simon.

 

 

 

Joella Thombs is an award-winning newborn photographer in Wethersfield, CT.  She owns Josephine Photography which has been specializing in maternity and newborn portraiture since 2013.  You can view more of her work on her website, www.josephinephotography.org, Facebook, www.facebook.com/josephinephoto and Instagram, www.instagram.com/josephinephotographyct

 

Day Twenty-two: Saige Wright

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When Sheena Wright went to work that day, she didn’t feel particularly good. She was experiencing some cramping and discomfort, but she chalked it up to normal pregnancy aches and pains. As the day progressed, the pain worsened until she couldn’t take it anymore. Her husband, Tauge, took her to the hospital, and while the nurses waited for test results needed to call the doctor, Sheena went to the bathroom. Moments later, she delivered her tiny daughter, Saige, into her own arms.

 

She went into shock, screaming for her husband who started screaming for the nurses, while she instinctively cradled her newborn daughter to her chest. Born at just 23 weeks, 4 days, and weighing just a little over one pound, Saige was so medically fragile that nearly every nurse in the NICU came to see her. As Sheena and Tauge struggled to come to terms with their daughter’s frightening delivery, they discovered a new form of terror. Doctors threw out unknown medical terms and scary percentages. Saige had a 40% chance of life, a 70% chance of mental disabilities, and a 60% chance of physical disabilities. Even worse, the hospital they were in didn’t even have the equipment necessary for a baby that small. Sheena was devastated.

 

 

By the time Saige and her parents arrived at the NICU, Sheena was struggling to cope. All the fear was welling up into anger, and her first reaction was to lash out. The doctors she’d dealt with so far had dealt in medical jargon and percentages, and she didn’t feel like they saw her as a person. She was afraid to trust anyone.

 

Looking back, she wishes she’d known that the NICU staff would quickly become like a family to her. When she did lash out, the doctors and nurses gave her space, then calmed her fears. They were patient, explaining Saige’s many medical challenges over and over until her parents understood every facet of what she was facing. They didn’t offer false hope, but they didn’t throw out scary numbers or promise dire outcomes either. Dr. Bob, in particular, acted more like a father figure. When he offered medical advice, he took the time to counsel her through it. She could ask him the same question 10,000 different ways, and he answered it each time. The nurses made a bed for her to stay with her baby, they noticed her constant presence and they encouraged her. Even the cleaning lady, Rosa, became a friend. She began to see her daughter’s caregivers as people: as daughters, sons, mothers, and fathers…and she began to realize she could rely on them as a support system.

 

Her mother and her older daughter also stepped up to support her. The listened and cheered her on. At one month, Sheena finally got to hold her baby girl. At two months, she finally got to hear her cry while the nurses were changing her tubing. Saige spent a total of 126 days in the NICU, and 97 of them were spent intubated. For the rest of her time there, she relied on oxygen. Even when she returned home, she required extensive care, multiple medications, and scores of doctor appointments.

 

There were no guarantees that Saige would walk or talk, but at 20 months, she is defying all the odds. While her milestones are still delayed, she walks and plays like any other kid. She’s potty-trained and eats with her mouth. While she isn’t verbal, her intervention teacher believes that she is fully capable and will speak when she’s ready. She does say small words, and she babbles and laughs. She has a strong will, and it seems she communicates very well with sign language. Her family jokes that she’s part fish; she loves water of any kind and swims all over the pool in her puddle jumper. She’s also obsessed with balloons, and she loves to dance.

 

 

Saige has an eight-month-old brother now, and the two of them are inseparable. They seem to spur one another on toward new milestones, pulling up to standing and taking their first steps at nearly the same time. Saige will try to pick her baby brother up, but he’s actually bigger than he is. Her parents assume her petite size is the result of her premature birth. Sheena jokes that they chalk pretty much everything up to being a preemie now. While Saige is still medically fragile and her parents have to be vigilant about illness, she has managed to get through twenty months with very little sickness.

 

 

When Sheena reflects on those hard days in the NICU, she can’t help but notice how strong she is. She didn’t know what she could do until she had to do it.  She lost 42 pounds while her daughter was in the hospital, but she grew tremendously as a person. In the NICU, babies take it day by day and night by night; Sheena and Tauge had to do the same. Parenting a preemie taught Sheena how to live in the moment and be grateful for it. She couldn’t get wrapped up in the questions and concerns because she had to be present for her tiny daughter. As she puts it, she now “sees a bigger picture…a better picture.” While she wouldn’t wish her experience on anyone else, she looks at bubbly, vivacious Saige and knows that everything was absolutely worth it.

 

 

 

 

 

 

 

 

 

Writer Info:  Wright family story written by Laura Simon.

 

 

Jackeline from Sweet Little Blessings Photography is  located in Victorville, CA serving the High Desert and surrounding areas. She specializes in Maternity, Newborn, Family and Children and has been a professional photographer for close to 4 years. Married to her high school sweet heart 17 years and a mother to 4 boys whom are the world to her.  Family is her first priority and she knows the importance of capturing those beautiful moments before they slip away forever. Feel free to visit her page and see her work @ Zenfolio | Sweet Little Blessings Photography   Facebook page:https://www.facebook.com/Sweet-Little-Blessings-Photography-636643723081281/  Instagram: Sweet Little Blessings (@sweetlittleblessingsphotograph) • Instagram photos and videos