When Baby Comes Early – Sarah and Arlo’s Story Part 3

Baby Arlo in the incubator. Born preemie at 25 weeksSarah and Arlo are testament to the strength of the human spirit and the amazing work that passionate, dedicated medical professionals do every day at TMC for Children. We pick up the story as Arlo has made a very dramatic early entry into the world and Sarah, Edward and Arlo become immersed in their new environment, the Neonatal Intensive Care Unit. 

Arlo’s dramatic early entry to the world necessitated that he be cared for in the Neonatal Intensive Care Unit (NICU).

“We could see our son anytime of the day or night and sit by his incubator all day.”

But Sarah and Edward couldn’t hold or move Arlo as he was at a risk of a brain bleed.

“He had to stay flat on his back for five days straight. We could not hold him. I could barely touch him. He had wires and tubes coming out of everywhere.

He was perfect though, all 10 fingers and 10 toes and tons of hair and a mouth just like his dad’s.”

How friends and family can help when baby is in the NICU 

With an infant so small, feeding was an issue,

“We would put a tiny bit of milk on a q-tip and rub it on his tongue while they fed him. Something to taste while a feeding tube down his throat filled his belly.”

After five long days an ultrasound of Arlo’s head revealed reason to celebrate – no brain bleed. Sarah finally held her son.

“Getting him ready to be held was a chore in itself. It took 3 nurses to get him ready to be moved and to take him out with the tubes and wires draped all over him. I sat in the kangaroo chair and waited patiently for them to hand me my son.

My baby boy, finally in my arms, I was overcome with excitement.

He was so tiny.

He was just 800 grams. Light as a feather. There was no muscle or fat on him and the term skin and bones took on a whole new meaning. His incubator was at 80% humidity so his entire body was moist and warm. They put him on my chest and tucked him in snug into my shirt.

And we sat there together for one hour.

The best hour I could remember in a very long time. Our hour.”

Sarah’s memory of this time is vivid,

“I remember my heart slowing down. I finally relaxed.

I counted his fingers.

I smelled his hair.

I touched his cheek.

I could only touch him lightly. No stroking his arm. He was too small and early that any amount of stimulation was extremely overwhelming to him. Kangaroo care was the best thing for him. For me. For us.”

What is Kangaroo Care?

Unfortunately, the next day Arlo got an infection.

“He was lethargic. Sleeping. Barely moving. It took everything in him to hang on to life and fight. We were unable to do anything for him, but wait. We couldn’t hold him for six days while he fought off a potentially fatal infection.

Nearly two weeks after Arlo was born, infection free, Edward was able to hold his son.

“Arlo looked even smaller on his daddy’s chest. He was perfectly content with his father. That picture of father and son is forever engraved in my mind.”

But this was just the beginning of Arlo’s NICU journey. An echocardiogram showed Arlo had a Patent Ductus Arteriosus , an unclosed hole in the aorta.

Patent_ductus_arteriosus.svg

By BrownCow. [Public domain], from Wikimedia Commons

What is Patent Ductus Arteriosus?
During pregnancy the ductus arteriosus is a hole that allows blood to skip the lungs, as it is already oxygenated from the mother’s blood system, but when the baby is born the blood if the ductus arteriosus is still open the blood will not be effectively oxygenated.

Arlo needed stimulation to breath, so his doctors medicated him with caffeine to keep his heart rate up. But between the milk, the IV fluids and meds, Arlo’s little heart had a hard time pumping so much fluid with the PDA. He was put on diuretics to keep extra fluid out.

Additionally, Arlo had to have a blood transfusion because his red blood cell count was too low.
At one month old, Arlo weighed 2.6 lbs!

Over the next month Arlo continued to gain weight. Every evening his parents would review the latest information “How many ounces had he gained? Did his food go down the tube? What was his temperature? And the most important, did he poop! One of his biggest hurdles was avoiding a gut infection and with every dirty diaper we were one step closer to avoiding a gut infection.”

Tips from NICU parents

The next few months were filled with sitting by the incubator; changing diapers; feedings every 4 hours; blood tests and medicine changes; and doctor after doctor checking his fragile body.

“We learned how to bath a three-pound baby, which is a lot harder than it sounds. How to feed him with a feeding tube. Sometimes his food would go in too fast and all the food would come back up. He would have a ‘spell’ were he couldn’t breath. We’d have to lower the tube. His heart rate would drop when he was fed so we had to be mindful of how fast his food went in.

We learned the different numbers, beeps and alarms on his monitors. Each one had its own set of warnings and scares. Hearing an alarm never got easier. My heart would always skip a beat anytime it went off.”

“One day I walked into the NICU, said hello to the front desk clerk, slowly meandered my way over to Arlo’s incubator, but it wasn’t there. Our big baby boy was in a crib! A hospital crib, but a crib nonetheless! Arlo was now able to regulate his own body temperature and graduated from an incubator to a crib.

Finally, the doctors and nurses started our discharge planning. Arlo had to come home on oxygen since he needed a little extra help due to his chronic lung disease. We made an appointment with the oxygen supplier and received all of our tanks, 50 feet of hose and an at home machine that made the ambient air into oxygen.

After being taken off his diuretics for one week and having no spells, the doctors decided that Arlo was ready to go home! We were finally taking our son home, 92 days after his birth.”

But after just a few days, Arlo had trouble breathing. He stopped eating and was lethargic and tired.

“We had just been to a doctor’s appointment when I just couldn’t watch him labor with his breathing any longer. Something was wrong. After talking to his pediatrician we decided that we needed to take him to the Emergency Department.

We were readmitted to the NICU.

Arlo’s heart was working too hard to pump all of the fluid through his open valve, which caused his labored breathing. His lungs couldn’t handle the extra work. He was put back on diuretics and we had to spend another 10 days in the NICU before we were sent home for a second time.”

This time, Arlo was home to stay. Today Arlo is a rambunctious two year-old. Mom Sarah tells us, “”He is doing absolutely perfect and has graduated all of his pediatric therapies and is a typical rowdy toddler.”  Arlo still has an open heart valve, but his family is hopeful that this will be addressed soon and he can be a regular kid!

image (3)In sharing their story, Sarah hopes to offer some glimmer of hope, “I had a hard time seeing hope at first myself…well honestly for a little longer than at first. Hearing the words NICU never meant anything to me before this other than a place where sick babies go. I know now that it is that, but it is so much more than that. The NICU for me now is a place I actually find comfort. I became close to so many people who cared about our son. We visit often and thank them. We also spend time with other parents and try to offer comfort.”

Much of the equipment from the micro diapers to the incubator and the pediatric therapies used in Arlo’s care is supported through funding from the Children’s Miracle Network. You can support children like Arlo here in Southern Arizona through donating to the Children’s Miracle Network.

Our thanks to Sarah for sharing her family’s story. image (4)Sarah and Arlo are pseudonyms.