Friday, February 10, 2012

The Journey

A peek at my Valentines gift from my two favorite boys.


Prematurity will always be in my part of my life---I won't be able to run or hide from it, but in all honesty given the choice I wouldn't change anything about Harrison, including his prematurity. Harrison has taught me so much life, made me a better, giving person. I am now a team leader for March for Babies Team Baby Harrison. I am part of two March of Dimes committees helping to support and create teams to help raise funds in the fight against prematurity. God knew what he was doing when he gave us Harrison and we are so blessed.

The journey necklace above came from Peekaboo ICU. Each bead helps tell the story of our journey in the NICU. The necklace isn't complete yet as it's missing the gestational bead as well as jaundice bead and few other I want to add as they become available.


The beads:

Purple Heart: The Preemie Purple Pendant is in honor of the million babies born too soon this year and the 12 million more struggling to survive. This pendant has a 925 silver charm that embodies the bracelet and a hand crafted purple glass heart that dangles below. The glass has been hand carved and the etches represent the struggles, strives, trials, and triumphs that make up the NICU journey.




Apnea/Bradicardia (black/white): Because premature babies brains and lungs are immature; apnea, (periods where breathing stops) occurs in approximately 85% of babies born before 34 weeks gestation. Apnea may be accompanied with periods of bradycardia, (or “bradys”) where the heart slows down. Stimulation usually helps the baby start breathing again, and NICU monitors make sure that these episodes are caught right away. Premature babies will grow out of this with age. This bead represents the ups and downs that come with having apnea and bradycardia and the emotional and physical struggles to overcome these obstacles.



PDA (red/pink roses): Before birth, the baby's blood is oxygenated by the placenta, not the lungs. The ductus arteriosus allows blood to flow from the heart out into the rest of the body, instead of going to the lungs to pick up oxygen. After birth, when the baby begins to breathe, the ductus arteriosus should close to allow blood to flow to the lungs to become oxygenated. In preemies, it may remain open, causing Patent Ductus Arteriosis( PDA) A PDA, which occurs in 8% of infants born between 30 and 32 weeks and more often in younger preemies, causes abnormal circulation. Medication, surgery, or just time may be needed to help close the ductus. This bead represents the PDA and the treatment that goes along with resolving this preemie condition.

Turquoise: symbolizes strength, protection from harm. Turquoise is the color of communication, self-awareness and initiative.

Kangaroo (silver): is a symbol of intuitive action and human connections. The kangaroo represents the importance of parent-child bonding in the earliest stage of life. Kangaroos bring extraordinarily strong warrior energy. This warrior brings strength and aids in self-empowerment. The kangaroo often comes into your life when things look grim and support and hope are needed. Science has proven that “kangarooed” babies thrive. Preterm infants that have this skin to skin connection with their parents gain weight faster, cry less, have a more stabilized body temperature, sleep better, breathe better, are often more alert, and have more stable heart rates.


Butterfly (silver): is a symbol of grace and eloquence and represents the transition into the world. The butterfly fearlessly leaves the safety of its cocoon to meet a new world in a new form, trusting its untried wings to allow it to fly. The butterfly is the perfect symbol of NICU graduation as the preemie makes their way into the world with faith and guidance; emerging strong and ready to fly as brilliantly as the butterfly.

Bee (silver): is the symbol for all the painful and unpleasant procedures that are endured along the NICU journey. (IV sticks, central lines, blood draws etc.)
The bee represents success and is a symbol of accomplishing the impossible. Aerodynamically- the body of a bee is too large for its wings and should not be able to fly. The bee’s wings need to work extra hard in order to accomplish this amazing feat. The bee teaches us that we can accomplish what seems impossible by having dedication, enduring the pain along the way and working hard, and gaining strength to get there.
Like the preemie, the bee is extremely sensitive to touch and sound. The bee works hard to pursue its dreams with incredible focus as it fertilizes its aspirations. The bee teaches us with endurance we can accomplish anything. The journey, although long and hard sometimes, will bring you a new sense of strength and the wisdom to know that you will make it.

Hearts barrel (silver):  “The love of a child is life’s greatest blessing.”

Respiratory distress (blue/black bead): affects as many as 43% of premature babies born between 30 and 32 weeks, and almost all babies born before that time. Full-term babies make surfactant, a soapy like substance that helps keep the lungs inflated. Without enough surfactant, premature babies’ lungs don’t inflate well. Preemies may need artificial surfactant, or may need help breathing while their lungs mature. The bead design represents the air exchange within the lungs with the light blue circles representing aveoli that are expanded as the air moves in. This bead represents respiratory support needs while in the NICU.


Reflux (tan/brown): affects up to half of premature babies. In preterm infants, the most common causes of reflux are immature muscles and abnormal breathing from chronic lung disease. If the lower esophageal sphincter is weak or underdeveloped, it can remain open when it should be closed, letting the stomach contents flow back up the esophagus. Typically a preemie will grow out of this condition over time. This bead represents the preemie’s fight against this very uncomfortable and difficult condition.

Aniema (red/pink): Premature infants often are anemic, which means they don't have enough red blood cells. Normally, the baby stores iron during the later months of pregnancy and uses it late in pregnancy and after birth to make red blood cells. Infants born too soon may not have had enough time to store iron. Preemies may also become anemic from blood loss before or during delivery, a mismatch of the baby’s and mother’s blood types, the need to take frequent blood samples to preform necessary laboratory tests, or an inability to make enough red blood cells to keep up with the preemie baby’s rapid growth rate. This bead represents the struggles with anemia, the constant and sometimes continues blood draws and the need for blood transfusions.

ROP (white/green): The eyes of premature infants are especially vulnerable to injury after birth. A serious complication is retinopathy of prematurity or ROP. ROP is abnormal growth of the blood vessels in the infant’s eye. About 7% of babies weighing 1,250 grams or less at birth may develop ROP. This bead represents the preemies eye exams and the courage and strength needed during these uncomfortable and sometimes painful exams. The white bead represents the complete energy of light with green dots as it is believed that green symbolizes healing powers for the eyes.


Heart with foot prints (silver): Preemie imprints on the heart.

Holiday (white/red swirls): Spending the holidays in the NICU can be very difficult both emotionally and physically. This bead represents the time spent with your preemie as you celebrate Christmas together for the very first time.

Celebration (grey bead): Celebration of overcoming obstacles.


This is only a short list of few pf the the 20 + diagnosis Harrison had due to his prematurity.


I still get very emotional about his birth and hospitalization. Some days while I am driving in the car, my mind replays moments from those days. Some days I can't kiss him enough or hold him tight enough.

Today is a special day. Today is Harrison due date. Gestational wise, we officially have a two year old! As a reward Harrison tinkled in the potty for his first time yesterday morning!

I wish I could put into words how thankful I am, how much each day means to me, and how much this whole experience has changed my life.

I invest myself so much into March for Babies because its a contribution, a way to give back what I can to have this amazing little boy.

If you haven't signed up already to join our team, please do. If you can't make the walk, donations can be made online. If you don't have time to raise money, but want to walk, that's fine too (it's great to show support in numbers). I encourage you to sign up; do it for Harrison.

To sign up for March for Babies or to Donate: click HERE.





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