You know you’ve spent WAY TOO MUCH time in the NICU when…

Archer has been a pretty busy boy lately, and we are overdue for an update, so we’ll start with the basics. He is now 10 ½ months old, or about 6 ½ months adjusted, and is over 14 lbs.! Archer’s therapists and early intervention specialist continue to be impressed with his progress so far, and he has been rolling from back to front and from front to back with much more ease and frequency lately. He is able to sit up unassisted for a bit longer now, although he much prefers to stand and grab for anything within reach (faces, hair, paper, blankets, etc…). Archer enjoys tummy-time, and once he develops some stronger arm and trunk muscles, he will be on his way to crawling. He is able to push off with his feet a little now while on his tummy and loves to bat and chase balls. His other favorites: the Jumperoo, being lifted in the air, scooting off the changing pad, babbling, and smacking his tray or table with his hands, spoon, or cup. He has recently begun to take notice of our cat too. Archer has started to sleep through the night more often in the past few weeks, although he is still inconsistent, and daytime naps rarely last more than 45 minutes at a time. He usually eats solids for lunch and dinner, and his repertoire now consists of: carrots, peas, avocados, bananas, applesauce, and sweet potatoes. He also likes toast occasionally and enjoyed some puffs for the first time today. Many seem to comment on his happy nature, and, yes, he is generally a smiley guy who loves to laugh. He loves to be around people, although he does seem to be entering the “stranger danger” phase, much to the chagrin of a few family members and his EI specialist. Other than that, he is usually only fussy when he is tired or hungry, which is a very welcome change from the first couple of months of colic and uncontrolled reflux! He is very distractible and doesn’t like to stop to eat or sleep if there is someone or something else interesting to see.

Having fun before bedtime

Tummy-time

Smiley boy 

Archer trying to be friendly to the cat

Highlights from the past month:

• We took Archer to an appointment with a plastic surgeon upon the recommendation of his neurologist. The surgeon pretty much told us what we expected to hear: Archer’s metopic ridge is pretty mild and should not require any intervention. The nurse took some measurements, and we will return in a couple of months to see if there are any changes, but we do not anticipate any further appointments.

• Now, back to the title. You know when you’ve spent too much time in the NICU when you go back to visit 6 months later and the valet not only recognizes you but is as excited to see you and your baby as the NICU nurses and doctors! While the hospital offered this convenient service, we never actually utilized it during the 5-day stay prior to Archer’s birth or his 131-day NICU stay, although we did receive a nice greeting and smile each time we entered or exited the hospital doors. This particular valet also kindly helped us stuff our car full on Archer’s graduation and homecoming day. It’s amazing the amount of stuff the nurses send you home with, in addition to our awesome collection of Kate’s Kart books! *Kate’s Kart has a fundraiser this weekend; if you are interested in supporting them, check out the link! 

• Archer attended his first BGSU tailgate!

Sleepy, cuddle time

In BGSU gear at the tailgate

At the NICU Reunion

• The week after that hospital visit was Archer’s first chance to attend the annual NICU Reunion. We were able to catch up with even more nurses and staff that we had not seen in awhile, as well as some of the NICU parents and babies that were down the hall from Archer. The party had a Halloween theme, and it was fun to see all of the little ones and the NICU staff all dressed up and out of scrubs!

• Archer also enjoyed his first trip to Cincinnati this past weekend! He got to visit his birthday buddy, Max, and experienced his first trip to the zoo and Ikea. Archer also slyly managed to stay up way past his bedtime to hang out with the adults!

  

  Max & Archer

Archer & Max

Archer helping Daddy put together his Ikea bookshelf for all of his Kate's Kart books

The Cincinnati Zoo

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

     

Disconnected

Archer has been doing great since he has been without oxygen tubes and an apnea monitor! Without having any beeps throughout the night, he is able to sleep a little better. Archer's sleeping habits are inconsistent and yet improving. He has slept anywhere from 3 to 8 hours straight a night and is taking longer naps throughout the day. Now if only Mom can get used to this new schedule, then everyone will be getting more sleep!
Archer enjoyed a recent visit from Grandma and Grandpa Kumfer where he showed them everything that he can do. He had his first real attempt at crawling the other night. His legs, hips, and knee motions looked perfect, though he did not get very far. The therapists are still impressed with his progress. His muscles are getting stronger, he is playing more on his side, and he is rolling to and from his side more often. He is also getting better at sitting up with assistance. He will be rolling over on his own soon enough. He is also quite the chatterbox and is often babbling (even during his breathing treatment!).
Archer had an appointment with his neurologist and was cleared from seeing her again, unless he has any future problems. She was not concerned about his development, though she did refer him to another specialist. Archer has a noticeable metopic ridge, which runs up and down the middle of his forehead. This can occur when the plates in his skull fuse too early. It does not seem to impair him or cause any developmental delays, as it seems to be just cosmetic. The popular opinion is that he will not require surgery and it will look better over time, as he grows and gets more hair on his head. An appointment has been scheduled at the end of September with a plastic surgeon to get a professional opinion. The plastic surgeon also works with a neurosurgeon when performing such operations.
Archer visited his pulmonologist again as well, and he was very pleased with Archer's progress! The doctor did caution that Archer may still have reactive airway disease or develop asthma at some point and may have a rough time fighting a cold due to his underdeveloped immune system from being so premature, but as long as he can remain healthy he does not see the pulmonologist again for three months. The pulmonologist recommended taking Archer off his diuretic medication today, and to take him off his reflux medication in one week. As long as he does well with those changes, this leaves Archer with just one daily medication, his steroid breathing treatment that he takes with a nebulizer. This is perfect timing because he has recently figured out how to clamp his mouth shut to avoid taking his medicine. The pacifier fake-out no longer fools him!
Archer's latest weight is 11 pounds 8 ounces, and he is almost 24 inches long. Mom recently packed up all of his preemie, newborn, and 0-3 months clothing and couldn't believe how far he has come! Those clothes look so tiny now, but Mom and Dad still recall walking into Archer's NICU room and seeing him in clothes for the first time!

Archer in a onesie after 13 weeks of just a diaper! He was 4 pounds, 2 ounces here. Look how big that pacifier looks compared to the picture below!

Favorite smile pic so far!

Not only is Archer sleeping in his own crib, but this was the first night he was totally disconnected! No IVs, umbilical lines, chest tubes, leads, temp probe, cannula, or ET, OG, or NG tubes! Ahh, must feel great!

Thanks for the cute hat and swaddle, Jussara!

No, this wasn't one of those lame photographer poses. He was just in the middle of getting his thumb in his mouth!

Yo!

Where's my coffee?

Play time is hard work!

Achieving Goals

Archer had a busy week full of appointments and accomplishments. He has shown everyone just how far he has come since being born 17 weeks premature!
Tuesday: Archer saw a urologist for the first time. While he was in the NICU, Archer had a urinary tract infection and an ultrasound showed that he had a mild case of hydronephrosis of the kidneys. Since this ultrasound he has been on a daily dose of Amoxicillin to help prevent any future infections. For this latest appointment he had another ultrasound of the kidneys. The urologist said that the hydronephrosis was cleared and that he did not have any reason to see Archer at a later date or keep him on Amoxicillin.
Wednesday: Archer, along with Mom and Dad, stayed overnight in a hospital room for Archer's pneumogram study. They arrived at 4:00pm and stayed until 8:00am the next morning. Archer was hooked up to two pulse oximeters to measure his oxygen saturation levels. One was for recording and the other was to alert nurses if he needed assistance. These also measured his heart rate and respirations. Archer also had a cannula that measured his outgoing airflow. It was also capable of pumping oxygen if needed, though the study tested how well he would do without oxygen. Archer was content for the evening and played, slept, and ate as he would at home. His oxygenation levels stayed around 96 or 97 percent for the majority of the evening! He only dipped in the 80s when he choked a couple of times (once during a feeding and once while waking up and refluxing). His new pulmonologist and a respiratory therapist visited in the morning to see how Archer did. They were very impressed and gave Mom and Dad a call later in the day on Thursday with the results. The pulmonologist was comfortable with taking Archer off oxygen permanently, along with the apnea monitor! Mom and Dad opted to keep the apnea monitor for a few more weeks while they attempt to have Archer sleep in his crib, instead of a rock'n play, and use it as a safety net while Archer is in another room from Mom and Dad while sleeping. Mom, Dad, and Archer are all pretty excited to get rid of the cannulas and oxygen (except the cat, who enjoyed playing with the tubing)!
Thursday: Archer met with speech, physical, and occupational therapists again to help with developmental skills. Archer's milk intake has been slowly increasing and has been taking 2 1/2 to 3 ounces per feeding. The speech therapist recommended some teething toys to help him get used to textures for when he starts solid foods, and these will also help when he starts to teethe. The physical and occupational therapists were impressed with his muscle improvements as he holds his head high and steady and is using other muscles to help twist, turn, and explore. It shouldn't be long before he starts rolling over on his own.
Friday: Archer had a follow up appointment with the pediatric surgeon who performed the hernia operation and circumcision. Archer had his sutures removed from the incision. The surgeon was pleased with the results and he has cleared Archer from any future appointments.
Current Doctors and Medications: Since Archer has been able to stop seeing a couple of doctors and get rid of some medications, here is an updated list of doctors, medications, and other concerns:

• Archer sees a pediatrician on the same schedule as any other baby would for well check-ups and vaccinations.
• Archer sees a pulmonologist monthly, who is helping to take him off, or reduce, medications and to monitor any oxygen and respiratory needs.
• Archer will see a pediatric ophthalmologist again in 6 months to look for any concerns of eye issues that result from prematurity, though currently his eyes are "perfect."
• Archer has a follow up appointment with a neurologist. He will most likely be cleared from seeing this doctor for any future appointments.
• Archer is currently seeing speech, physical, and occupational therapists, which Mom and Dad hope to continue seeing through the winter months at home.
• Archer is taking a daily reflux medication, which was just reduced from 3 1/2 ml twice a day to 5 ml once day.
• Archer is taking a daily diuretic to help reduce fluid in his lungs.
• Archer is taking a daily breathing treatment to help his lungs mature.
• Archer will receive preventative RSV shots, once a month, when the season begins in the fall.

All in all, Archer is surprising many with the numerous accomplishments he has achieved since his premature birth and leaving the NICU, thanks to many doctors, nurses, family, friends, and prayers! 

Archer all hooked up during the pneumogram. That bundle of 

wires was pretty heavy and made diaper changes difficult!

Archer's head control during tummy time has greatly improved!

Home Again

Archer was able to come home this morning after having hernia surgery yesterday. He did well throughout the night and did not have any events to cause concern. Around 6:00 in the morning he started to perk up and he took a full bottle. Since being home he doesn't seem to be as sore as he was last night. He is still a little gassy and fussy. Mom and Dad have had Archer on 1/8 liter flow of oxygen at home to make sure he isn't tiring himself out by working too hard. Archer will have a follow up appointment with the surgeon in about one week.

On the way to the hospital!

So hungry I had to eat my thumb and paci!

Waiting to go to surgery.
 

Still waiting. This gown is huge!

Where are my toys? I'm ready to go home now!