The Playpen

I’m pleased to announce a special guest for the third entry in our Preemie Adventure series. This series typically consists of a collection of real-life stories from real-life parents that deals with the emotional roller coaster associated with pre-term birth.

This installment comes Barbara, who writes TherExtras, and presents a unique perspective, as she tells of life in the NICU as an OT some thirty years ago.

Barbara H. Boucher, PT, PhD, OT has devoted her career to the health and well-being of children. She is a specialist on the treatment of movement disorders and developmental problems. Her credentials include a degrees and licenses to practice occupational therapy and physical therapy, and a doctor of philosophy in Human Development and Family Sciences. She has clinical experience in rehabilitation hospitals, neonatal intensive care units, private homes, and public schools. She was a university faculty member and taught graduate students in physical therapy for 6 years. Stop by and check out her blog…it is a vast wealth of information.

Drama in the NICU

I first walked into a NICU in 1978. I was a young adult, recently graduated from college and newly licensed as an occupational therapist. Not to be so ‘about me’, but as a developmental specialist – I look through a lens that sees every moment in time as exactly that – a moment in time. I set the context for my early NICU experience with who I was then.

The NICU was usually calm but with the constant-many-metronome-like-beeping of life-sustaining machines – I can imagine the sounds again without effort – as I’m sure you can also. Visually the NICU was a ‘busy’ room and at the same time, almost monochromatic save for the carefully spaced, mostly-brownish babies in isolettes or open ‘warmers’ for those who required more constant care, er, touching by medical personnel. Specialists in neonatology were only beginning to discuss the effects of 24-hour light on the babies.

The first NICU I worked-in was in an old inner city hospital serving mostly ‘indigent’ patients (terminology of the times) - meaning the patients received care from a government (county) administered entity. They did not have choices for where to obtain medical care. Despite our real and obvious differences, the mothers of the babies and I had to adjust to the near-foreign environment of the NICU. It was not a place many people entered or experienced. Completely created for a small number of people, the NICU in 1978 was rough and competent at the same time.

Matt posted statistics on preterm births that ring true with my experience in terms of both women in poverty and girls (younger than 17 years) who give birth. Without means or maturity, a pregnant female is less likely to get pre-natal care which is associated with preterm birth.

Before entering the NICU I was required to don a gown and do a surgical hand-scrub. Was it just me or was the NICU always a bit warm? The nurse manager was exceptionally nice to me while explaining the temperature control measures for the babies. Pushed from a warm environment too soon, temperature was something that could be controlled for the babies.

OTs started and ran the ‘infant stimulation’ program, but the PTs wanted to get in on it. A bit of a turf war rumbled as an undercurrent in this place. I was an outsider in the NICU, too, among nurses who spent 8-hour shifts with the babies while I visited the room only daily, 2x/day at most. Don’t even think I had more than the merest awareness by the physicians. Classical medical hierarchy was in place. While unknown to most of the community that paid for the care, the NICU was a microcosm of the society surrounding it. Within a space no bigger than your home, staff and MDs interacted on personal and professional agendas despite a communal mission to grow babies out of the nursery.

One day I was doin’ the usual infant stimulation to Baby-who-weighed-enough-for-the-OT-to-touch-him. The routine included some touching (massage), touching to the mouth (oral stimulation), changing the baby’s position (handling), gently moving the baby (vestibular stimulation), talking to the baby and tinkling a bell near his ear (auditory stimulation), moving a black-and-white cardboard target in front of his face and watching for his eyes to follow (visual stimulation). I glanced to my left and saw the neonatologist with an unfamiliar physician working on a baby nearby. Without any prior information I knew what he was doing. He was inserting a small plastic reservoir between the baby’s skull and scalp to collect excess fluid from the brain. Neurosurgery less than 4 feet from me and my tinkly bell.

I pause to think more on that memory and its impact on me, a mother for a while now.

In the NICU were the drama of coming to life and the potential of death.

Like a mechanical womb trying to give birth to numerous babies the NICU showed young-me graphically the intensity and frailty of humanity.

No mothers or babies were turned-away from this hospital. With fewer choices than others they came and were given everything available to survive premature birth.

The numbers of preterm births in the US look big, but you know you are in the minority of birthing mothers and participating fathers for your experiences in a NICU. If family and friends don’t get it, can’t distinguish the mark a NICU experience makes on you, let that reinforce your membership in an elite and proud group of parents. Upon entering the NICU you experienced your child in most unique way, profoundly and dramatically.

You can subscribe to Barbara’s feed here.

In honor of Prematurity Awareness Month, please take a moment to stop by The March of Dimes and sign the Petition For Preemies. Your signature will help raise awareness of this rapidly growing phenomenon, and hopefully gain support for prematurity-related research and data collection.

If you would like to submit your preemie stories and photos for inclusion in The Preemie Adventure, drop us a comment, or email us at matt@redsparks.com.

Matt & Aline

Welcome to the second installment of The Preemie Adventure. This personal and inspirational series is a collection of real-life stories from real-life parents that deals with the emotional roller coaster associated with pre-term birth.

This installment comes from a good friend of ours, Jeremy Biser. Jeremy runs a brilliant site entitled Discovering Dad, which was founded in 2007.

The objective of Discovering Dad is to build connections between dads and encourage fathers to get involved in their kids lives. It is also meant to help fathers establish their own voice in society as something more than the ’second’ parent.

We appreciate Jeremy’s story, and hope you draw as much inspiration from it as we did.

Our daughter, Caitlin, was born at 35 weeks, and she weighed 5 pounds 6 ounces. We were a little surprised at her early arrival, but our 2-year-old son was born at 36 weeks, so we had started to prepare for the possibility of another preemie a week or so prior to Caitlin’s arrival.

When she was first born, we anticipated a short stay in the NICU; however, we were not prepared for a 24-day battle with a severe intestinal infection. A few days after birth, Caitlin was diagnosed with Necrotizing Enterocolitis, which had the potential of rupturing her intestines and requiring major surgery. Fortunately, the disease was caught early, and she was a little fighter. It was an emotional roller coaster for us, but looking back on it now, it brought our family even closer together.

We are so thankful for the blessings we have, especially our three kids. Today, at 3-months-old, Caitlin is a happy and healthy baby. She went from being in the 5th percentile for weight and height when we brought her home to the 50th percentile in both at her 3 month check up. Every time I look at her, my heart swells with joy that she is a part of our life.

You can subscribe to Jeremy’s feed here.

If you would like to submit your preemie stories and photos for inclusion in The Preemie Adventure, drop us a comment, or email us at matt@redsparks.com.

Aline & Matt

We are extremely excited to kick off a new ongoing series at The Playpen entitled The Preemie Adventure! This personal and inspirational series is a collection of real-life stories from real-life parents that deals with the emotional roller coaster associated with pre-term birth. The Preemie Adventure is designed to feature up close and personal stories, advice and information regarding prematurity, along with photos of preemies, then and now. Aline and I drew a great deal of inspiration from the photos along the walls of the NICU during our daughter’s stay there, and we have committed ourselves to providing support and encouragement to parents who are going through the same experience now.

Our first story comes from Jennifer, who writes a terrific blog called Blessings From Above.

Jennifer is one of the nicest people you will ever meet, and has agreed to share the amazing story of her son, Kyle’s, whirlwind premature birth. Please join me in thanking Jennifer for her honest and uplifting submission, and be sure to stop by her site and drop her a comment. Thanks, Jennifer!

Kyle’s Story

During a family vacation to Disney World, I was diagnosed with Preterm Premature Rupture of the Membranes (PPROM)…which is a fancy way of saying that my water broke VERY early. I was 22 weeks pregnant and was told that there was very little chance that the baby would survive.

We were devastated as they went over the statistics. My due date was still 121 days away. We had a 90% chance that the baby would die in the delivery room. If he beat the odds and survived, it would almost surely be with severe disabilities and a very poor quality of life. We were even offered medication to speed up the “inevitable”.

Thankfully, I lasted almost two weeks on bed-rest, which gave the baby some much needed time to develop further. At 24 weeks and 5 days, Kyle was born weighing 1 pound 6 ounces. Again we were warned that his chances of surviving, let alone leading a quality life, were not good.

We were devastated when we saw how small he was. And it was not a tiny, cute little baby kind of small. He obviously was very sick. Despite all the problems on the inside - things like his lungs and heart not being developed - we were struck by how different he looked on the outside. One of his eyes was still fused shut. His skin was transparent and covered with hair. Even his ear lobes had not yet developed cartilage and just hung there.

You will hear many parents of preemie’s state that their NICU stay was a rollercoaster ride and this description is so true.

During Kyle’s 119 days in Florida Hospital South’s NICU, while he had some good days, he also endured heart surgery, 69 days on life support/ventilator, Cytomegalovirus (CMV), anemia, bilateral hernias, Bronchopulmonary Dysplasia (BPD), Chronic Lung Disease, bilateral renal calculi (small kidney stones), jaundice, aspirations, Respiratory Distress Syndrome, 3 bouts with pneumonia, hyperglycemia, 11 blood transfusions, high blood pressure, numerous infections and Stage 3 Retinopathy of Prematurity requiring Eye Surgery.

Thanks to many answered prayers, today Kyle is a happy and healthy 18 month old (14 months adjusted age). He is the happiest baby and loves to be the center of attention. He is close to walking on his own and is adding new words to his vocabulary weekly.

If there is one remnant of Kyle’s extreme prematurity, it is the slow rate in which he has grown. Although it is finally starting to get better, since the day we left the hospital we have received comments on Kyle’s small size. An automatic question of strangers seems to be, “How old is your baby?” When he weighed 7 pounds and I would answer that he is six months old, people would look at me like I am crazy. Kyle is now almost 19 pounds, which considering his start in life, is amazing to me. Still, I feel like I always have to defend his small size and am looking forward to the day that he is actually on the growth chart!

We had a great appreciation for Kyle even before his prematurity because I had such a difficult time getting pregnant (he is an IVF baby), so even his conception was nothing short of miraculous to us. But everything now is even more precious to us and we take nothing for granted. We have learned some valuable lessons through this trial and we’ll never be the same. When I look at Kyle now, it is hard for me to imagine that he once weighed just 18 ounces. I am amazed by the accomplishments he has made, he truly is our miracle baby. “This is the Lord’s doing, it is marvelous in our eyes.” Psalm 118:23

If you would like to submit your preemie stories and photos for inclusion in The Preemie Adventure, drop us a comment, or email us at matt@redsparks.com.