Yum!

Archer had been off all medications (except for his nightly breathing treatment) for about one week's time. Although, once he stopped his reflux medication, he began coughing and eventually was wheezing, as if he was out of breath all the time. The pulmonologist recommended putting him back on a reflux medication, which was changed from Prilosec to Prevacid. This is in the form of a pill, which is better than using a syringe since Archer learned how to refuse medication that he does not like by clamping his mouth shut. He has been healthy since the medication change, and the wheezing has not come back.
Archer has been rapidly progressing in several ways during the last few weeks. He is over 24 inches long and is closing in on 13 pounds! He had an appointment with the pediatrician to update his vaccinations. He had to receive five individual shots because the combination shot was not available. He was not a very happy boy following the shots but was only a little fussy once he returned home.
Archer's fortifier that is added to his milk has recently been decreased from 25 calories to 22. He has also started eating some solid foods, though it took him a few days to warm up to the idea. He had no interest in rice cereal, but after a few tries he now enjoys eating applesauce, bananas, and avocados, all while throwing cups and spoons onto the floor. He can also be quite impatient if he has to wait for another spoonful.
Archer's therapists are still impressed by his progress. His muscles are getting stronger by the day. He has recently started standing straight with assistance, and he also rolled over from his back to his belly all on his own for the first time today! He has been extremely close to rolling all the way over for the past few weeks but would opt to scoot on his butt to reach his toys instead. He often motions to try to sit up on his own, and his balance is much improved. He likes to grab faces and hair, and he enjoys jabbering, smiling, and giggling. Mom and Dad have found several ticklish spots and enjoy playing some silly games with him.

Working on his biceps with the Boppy

National Neonatal Nurses' Day

In honor of Neonatal Nurses’ Day, we wanted to take some time out to share our appreciation for the numerous nurses that helped make a very frightening time in our lives much less intimidating and traumatic. Since we are not aware of any national days to honor neonatologists, respiratory, physical, occupational, or speech therapists, or any of the other staff vital to a NICU’s daily operation, we would like to acknowledge all of those wonderful people too. Not only are we forever grateful for the amazing job they did in ensuring that our son had the best possible chance at leading a long, healthy life outside of the NICU, but we are also very thankful for the friendships, the extra care they took in allowing us to act as parents in a critical-care hospital setting even when it meant more work on their part, and the way they cared for our son as one of their own. Not only do they care for the youngest, most medically fragile patients, but they care for some of the most emotionally fragile families as well.

While I have a lot of respect for those that work in all parts of the medical field, I believe many underestimate the unique work of NICU nurses and staff.  During our first week in the NICU I was rendered speechless by a couple of well-intentioned parents who started a conversation in the family lounge. They began describing how their daughter was “only” 5 pounds at birth, and they were already tired of the NICU after being there for almost a week. I think most of the population is lucky enough to remain unaware of the struggles of premature birth beyond knowing someone who was/had a preemie a few weeks early but is doing great now. These are the people who are under the impression that “all” NICU nurses do is feed and rock babies and change diapers. I have to admit that I was one of those people before my own pregnancy came to a screeching halt. Even during the five days in the hospital prior to my son’s birth I was largely in denial and believed my preterm labor would be stopped and I would soon be home on bed rest until Archer was one of those 5-pounders who just needed a week or so in the NICU to grow. I don’t intend to say that those “feeders and growers” are insignificant, because any amount of time spent in the NICU, even if a single day, is extremely traumatic for any family, but I think the “intensive care” aspect and special dedication neonatal nursing requires is largely unknown to the public-at-large. I would like to take this opportunity to share some of the ways my son’s NICU nurses and staff went above and beyond feeding, rocking, and diaper changing, as well as their job descriptions, to make our 131-day NICU stay more manageable. Hopefully we can educate those who do not know much about the unique work of neonatal nurses and remind those with their own NICU experiences to continue to thank the nurses and staff who touched their lives.

Archer on Day 10 of his NICU stay

Our son’s nurse(s), NNP, neonatologist(s), RT(s), PT, OT, SLP, case manager, and/or NICU staff member(s)…

·      Gave two very overwhelmed soon-to-be parents a tour of the NICU with a reassuring smile and stories of becoming like family (turns out she was right).

·      Offered a kind smile and status update each morning upon entry to room 3009, as well as each time we came back from a meal or errand break. Welcomed us through the NICU doors with a smile and greeting.

·      Continuously monitored for the arrival of lab, ultrasound, and X-ray results so that concerns were eased as soon as possible.

·      Made frightening phone calls home with a calm, caring voice when an unexpected hurdle appeared and parental consent was required to commence treatment.

·      Answered the same questions over and over and took the time to explain what each alarm, monitor, ventilator, wire, tube, line, medicine, lab result meant/did.

·      Taught us how to recognize when our fragile son was upset and to gently “contain” or touch him when we still were not able to hold him.  Taught us how to best hold, position, massage, and physically challenge our son.

·      Counseled, cried, and laughed with us, and shared stories and pictures from their own lives.

·      Made the time to sit down and address all of our questions, concerns, and fears when times got tough. Listened without judging and strived to come up with solutions. Valued our knowledge and intuition as parents.

·      Did a lot of research, paperwork, and phone calling to ease financial concerns, schedule appointments, arrange equipment, and ensure a happy discharge day and homecoming. Arranged a repeat car seat study and celebrated as much as we did when it was passed.

·      Spent Christmas, New Year’s, Valentine’s Day, St. Patrick’s Day, Easter, birthdays, etc with our family instead of their own. Took photos of our son when we weren’t there for special moments. Created crafts and other mementoes for our son to commemorate important NICU milestones.

1st time Archer's naked face was captured on camera on Day 43

·      Gathered to witness and celebrate the first time we got to practice kangaroo care after 35 days in the isolette, when our son finally made it off the ventilator after 60+ days, then to CPAP, nasal cannula, into a “big boy” bed, and (briefly) oxygen-free.

·      Called in the experts for IV placements, lab draws, and catheter placements to ensure the fewest pokes possible.

·      Rolled in a chair from the nurse’s station so that we could sit comfortably and stare at our sleeping child in the isolette as long as we wanted when we couldn’t yet touch him.

·      Made sure we had the most comfortable recliner available for kangaroo care. Encouraged kangaroo care even though it often meant more work, tripping over wires and tubes, and climbing over furniture, even after recent knee surgery.

Kangaroo Care on Day 39

·      Taught us how to change a one-pound baby’s diaper and kindly allowed us to even though it took us three times as long, and later guided us through position changes, bath time, how to bottle-feed, burp, breastfeed, install a car seat, and administer medicine.

1st bottle feed on Day 96

·      Welcomed us to stand at the isolette and watch or assist in assessments even though it meant we were often in the way.

·      Smuggled me a delicious cupcake (made by a very talented nurse) from the staff lounge on Valentine’s Day.

·      Brought in her own swing to help calm a fussy baby who loved movement.

Archer calm and cozy in the swing on Day 93

·      Tracked down a crib-side CD player and made sure it had a constant supply of new batteries. Listened to the same Beatles’ lullabies CD over and over.

·      Answered late-night and early morning phone calls, even when busy, with a kind, encouraging voice that eased apprehension at having to be away from our child.

·      Offered to stand and hold the pacifier in our son’s mouth until he fell asleep so that we could leave for the night and get some sleep ourselves.

·      Advocated for our son by making sure the doctor knew when my son seemed “out-of-sorts,” or a better method or schedule might be utilized. Always made sure he was comfortable by changing positions frequently and maintaining an immaculate, and often color-coordinated, isolette and crib.

In the "big boy" crib with his CD player and O2-free on Day 120

·      Stood next to our son and stroked his head. Provided syringe after syringe of Sweet-Ease during a ROP laser treatment.

·      Was disappointed (although she tried to hide it) when I walked in one day (a little later than usual) because she thought she would finally get a chance to hold and feed my son.

·      Shouted to stop me in the parking lot one morning as she was headed home and I was headed into the hospital to share a hug and that my son had taken ALL of his bottles for the first time that night!

·      Checked in for updates when on vacation with family to see how my son was doing. Came in to visit on her day off because she knew my son might be headed home before her next shift. Gave up her lunch break to hold and cuddle my son. Made extra visits when my son was having a rough night and sang to him. Came in from maternity leave to help celebrate my son’s NICU graduation day.

·      Packed breast milk bottles as if an organ to be transplanted.

Graduation Day on Day 131

Although we had WONDERFUL primary nurses, there were many others who helped care for our son on a daily basis. Whether it was when his nurse finally decided to take a much-needed bathroom or lunch break, during kangaroo care, deliveries, lab draws, or when oxygen saturations or heart rate were dropping dangerously low, the other nurses and staff never hesitated to assist when needed. 

The result of all of that dedication?

Archer on Day 1

Archer today: 9 1/2 months old; 5 1/2 adjusted