Appointment Update

Archer had two appointments today. He has been handling the traveling just fine when it's time to take a car ride. He usually falls asleep fairly quick.
Archer first met a pediatric surgeon who looked at his hernia. The doctor was a very nice and experienced man who eased Mom and Dad's nerves about surgery. Archer's hernia does not seem as large as it had in previous weeks. In rare cases hernias go away on their own. If Archer waits about 12 more weeks to have the surgery then he would be less likely to have apnea during the surgery, he would recover from anesthesia and from being on a ventilator more easily, or he could have a rare case of it going away on its own. The doctor also commented on Archer's reflux and fussiness and stated it will just be something that will take some time for him to outgrow.
Archer then met with his ophthalmologist for another eye checkup. Archer's progress is still in the good news zone as the vessels still seem to be growing in the right directions. He will have another checkup in four weeks.
Archer has not eaten very well in the past 24 hours. His stomach seemed extra sensitive. Archer is now trying out a new medication for reflux, Prilosec. Mom and Dad hope this will ease his discomfort and will make it easier to eat. Archer was weighed at 6 pounds 11 ounces, but with clothes and diaper on.

Difference of Opinions

Archer's first appointments have confused Mom and Dad regarding Archer's health because they have heard various opinions. Archer's pediatrician said that Archer was not on a growth chart but he is following a good growth curve. Archer's growth has to be adjusted, just like his age. It is unfair to compare Archer to other four or five month old babies. The pediatrician was very relaxed and was not concerned about Archer weighing just over 6 pounds. Archer's milk or caloric intake was not changed after this appointment.

A few days later Archer had an appointment with a pulmonologist. This doctor was very concerned about Archer's growth. This doctor explained that Archer was in the 1 to 3% range and he needed to be in the 50% range in order to be considered healthy. This doctor also said that Archer's fussiness is not due to his hernia, but rather his reflux. This opinion is the opposite of what NICU doctors and nurses had told them about Archer's fussiness while eating. Mom and Dad thought he was always uncomfortable because it was difficult to process food past the hernia. After this appointment, Archer's caloric intake was increased from 22 to 24, with the order of increasing it to 27 if he is doing well. 

Some of Archer's medications were also changed to help with reflux. 

Mom and Dad had tried mixing Mom's milk with a 24 calorie fortifier, though Archer did not tolerate it. In fact, he ate much less of what he normally ate, and he was still fussy. Mom and Dad then tried straight milk, which he seemed to eat more of and was less fussy. They made a call back to the pulmonologist about Archer not accepting a 24 calorie fortifier and a suggestion was made to change the brand of fortifier from Neosure to Enfacare. After a couple of days on Enfacare, Archer seems to be doing much better during feedings and is eating close to his requirements. Archer's reflux issues were still noticeable, so his reflux medication prescription was just changed and the results of this are yet to be seen. 

The pulmonologist also said that if Archer is gaining a healthy amount of weight (roughly 1 pound every 2 weeks) then the order could be put in soon for Archer to be off oxygen during the daytime, and then progress to no additional oxygen at all. Archer's weigh-in today by the visiting nurse was 6 pounds 7 or 8 ounces, as the scale is a little inaccurate. 

Archer has two more appointments tomorrow. The first is a consultation with a surgeon regarding Archer's hernia, the other is with the ophthalmologist to check the progression of Archer's eyes.

Archer has been enjoying spending time with grandparents and keeping Mom and Dad busy and awake. He likes to attempt to crawl during tummy time (he mostly just squirms on the floor) and climb up Dad's chest to his shoulders. He also had his first couple attempts of poo shooting at Mom and Dad during diaper changes. 

Home Life

Archer has had a good first week at home. He takes in his required milk during the majority of his feedings, though he is still colicky often because of the uncomfortableness of his hernia. Archer will be awake for a few hours at a time, for a couple of periods during the day. He likes to sit up on his boppy, do push-ups on the floor, hang out in his rock-n-play, and play with other toys that he has been given.
Mom and Dad found that Archer sleeps better at night (without his apnea monitor going off) in his rock-n-play. He will wake a up a few times at night to eat.
Archer had his first couple of appointments this week. He met the pediatrician who was well-informed of Archer's needs. He did well during this meet-and greet and will go back to see the pediatrician when he is six months old. After this appointment, Archer had a checkup with his ophthalmologist. It was shown that Archer's eye vessels are continuing to grow in the right direction, ever since he had his eye procedures. He is not out of the woods yet as far as correct vessel growth. The vessels have not fully made it around his eye, so there is the potential of them starting to regrow in the wrong direction before they make it all the way around. Archer has another checkup in two weeks.
Archer's home life has been uneventful. He has not required any extra attention because of any health incidents. He keeps Mom and Dad on their toes and lets them know when he needs attention. Archer weighs six pounds 5 ounces.

First Days at Home

It has been a blessing to have Archer at home with Mom and Dad. Taking care of Archer at home is more intensive than taking care of him at the NICU, though Mom and Dad are loving every moment. The night staff at the NICU typically took over the care while Mom and Dad got some rest and relaxation. The nursing staff that cared for Archer during his stay is definitely missed in several ways.
Archer came home with oxygen and an apnea monitor. The monitor is very loud when it alerts Mom and Dad about Archer's breathing stoppage. 95% of the time it beeps because a lead came off his chest. Any other time it beeps Archer seems to be breathing just fine, but the breaths are shallow, making it difficult for the monitor to pick up.
Archer's first day at home was great! He ate well and slept well. A home nurse visited. She went through some paperwork, weighed Archer, took his temperature, and listened to his chest. A home nurse will come every other day for the next few weeks to help keep an eye on Archer. The home nurse is available to help deter trips to the doctor's office. She will even be able to give Archer RSV shots during the RSV season.
Archer's second day was not as good, but it was still a fun day. Archer's hernia bothers him often and it makes him very colicky. He fusses many times while eating, thus feeding can take up to an hour with a diaper change, and then the process and fussiness is repeated two hours later for the next feeding. Sometimes it makes it hard to give Archer the amount of milk he requires. Mom and Dad will consult with a physician about the hernia soon.
Archer has turned it around today and is back to eating well and not fussing as much. The fussiness will most likely be on and off until the hernia is removed.
Archer seems to enjoy his new environment. He has several toys to play with, fun music to listen to, soothing bath time, lots of books to be read, and lots of cuddle time. Sometimes Archer sleeps well in his crib and sometimes he would rather cuddle with Mom or Dad.
Archer has several appointments coming up next week. Mom and Dad hope the traveling back and forth to and from appointments does not hinder the progress they have made with Archer's schedule.

A Letter to All from Mom and Dad

It has been a very long road for our family, and we would like to thank all those who have supported us since the end of November 2012 and address some concerns regarding Archer's health.

Thank You:
Mom would not have made it to Dupont hospital in time if it wasn't for her intuition to get checked out by her obstetrician in Defiance. We would like to thank the OB for visiting Mom at Defiance Regional Hospital and making the recommendation for taking the trip to Dupont Hospital in Fort Wayne. It was a scary time and she helped us through the first hour of this journey.
When we made it to Dupont Hospital Mom was seen by her specialist (perinatalogist), and he made the call to perform a procedure (cerclage) to help keep Archer in the womb. This lasted for five nights. On Friday night the doctor was concerned about the situation but kept it to himself because he did not want to concern Mom and Dad. He had the intuition to come back in early Saturday morning to give Archer and Mom another look. The umbilical cord was prolapsed, mandating an emergency c-section even though Archer was head down. Waiting could have led Archer's blood supply to be cut off. The doctor gave the news that Mom had to deliver almost 17 weeks early; Archer had no choice but to come out into the world. It was the scariest moment of Mom and Dad's lives, and they had to make a difficult decision in two minutes time. They were told that Archer had a 40-50% chance to survive. The doctor and hospital staff delivered Archer at 7:47 that morning; he made his entrance with a couple of cries. Mom's perinatalogist saved Archer's life that day. He said if he would have waited another 20 minutes Archer might not have made it, and Mom and Dad are very thankful to have been in the hands of such a capable doctor in a facility equipped to care for babies at such a young gestational age.
Archer was then placed in the hands of a neonatologist and a nursing staff. Mom and Dad waited 4 hours to see Archer. It was soon realized that he was in good hands in the NICU as well. They thank the neonatologist and the nursing staff for helping to save Archer and transferring him from the womb to an incubator in a room full of life support technology.
Mom needed care for a few days after delivery. She was sore and unable move around without pain. Mom and Dad would like to thank all nurses who cared for Mom after the delivery.
The next several months were full of ups and downs, just as the neonatologists and nursing staff had predicted. There were times of frustration, happiness, and sadness. Times when Mom and Dad would question doctors, nurses, and Archer's care. They would like to thank the staff of all six neonatologists, the nurse practitioners, all nurses who helped care for Archer, all respiratory therapists who provided Archer with oxygenation systems and breathing treatments to help get his lungs healthy, the physical therapists, speech pathologists, ophthalmologists, case manager, and anyone else not mentioned but who helped with Archer's care. They would like to thank all of them for putting up with Mom and Dad for so long and helping them bring Archer home healthy. Mom and Dad made some good friends at Dupont's NICU, and they hope they get to keep in touch often with these newfound friends.
Family and friends helped Mom and Dad throughout these tough times too. Some helped take care of Mom a few weeks after delivery and offered rides to the hospital. Some cooked meals and offered them to Mom and Dad to eat in between their traveling and time spent in the NICU. Some offered their vehicles for transportation, meals, gift cards, hotel rooms, money, groceries, and helped in any way they knew how. They showered Mom, Dad, and Archer with prayers, gifts and diapers. Several came to visit Archer and provided their support. Mom and Dad thank them for showing their support during these tough times.
Mom and Dad's coworkers have been absolutely tremendous. Dad was able to take as much time off as needed to help care for his family. The administration, teachers, and students in the school district constantly showered them with cards and generous gifts. A book drive was also coordinated to donate new books to Kate's Kart. Mom and Dad would like to thank the community of Ottoville.
Thanks to everyone who followed this blog. It was first created to communicate with family and friends who were far from Dupont Hospital. It became a way for Mom and Dad to reflect on Archer's progress and an outlet for other preemie parents to learn about common, or uncommon, preemie ups and downs. The blog has been viewed from across the world and has been viewed thousands of times. Dad needs a break from the blog. If he keeps it going it will not be updated daily. He is ready to spend more time playing with Archer rather than writing about him.
Thanks again everyone! Your support will not be forgotten; Mom and Dad hope to repay your support if they are in the position to do so.
Thank you.

Archer's Health:
Archer started out with a rough life but he has progressed far beyond Mom and Dad's expectations. Here is a list of concerns that Archer will be coming home with:

• Chronic Lung Disease - Archer's lungs were not meant to work at 23 weeks gestation. Even if he is on little oxygen support, his lungs are still weak. Archer is more prone to catching sickness and infections than babies born full-term and without health issues. The slightest cold has the potential to send Archer to the hospital, and Mom and Dad would rather not relive the hospital experience. Second-hand smoke is not good for Archer's already fragile lungs. Smoke can cling to cars, clothes, other materials, and people. If you are a smoker we ask that you travel in a smoke-free vehicle when you visit Archer and that you have a new change of clothes that do not smell of smoke. Smoke can increase the risk of SIDS and RSV. We ask all visitors to be healthy and stay sanitized with clean hands and clothes while visiting. 
• RSV - Preemies are more susceptible to RSV (Respiratory Syncytial Virus). The season lasts from fall to spring, and the start and stop times of the season varies by the year. Archer will receive RSV shots every month during the season for the first couple years of life. The average person can recover from RSV in 1 to 2 weeks. It can be much more severe for preemies. RSV in adults can appear as the common cold or cough. If this is passed on to Archer, then it could mean a rough hospital trip for him or worse. Please stay healthy and sanitized while visiting.
• ROP - Archer required an eye procedure, in both eyes, because his eyes were not fully mature and blood vessels were growing in the wrong direction, which can lead to detachment of the retina and potential blindness. His last checkup showed a positive beginning to regrowth of the vessels in the back of his eye. He will require more checkups to see if any more procedures are needed. At the very least he may require glasses, or not, but this is still unknown.
• Hernia - Archer has a rather large hernia in his lower region. He will require outpatient surgery to remove the hernia when he is 55 weeks gestational age unless the hernia is causing more significant issues. The hernia could be making it difficult for him to pass stool. His stomach seems very sensitive. He will also be circumcised when he has this surgery.
• Brain Bleed - Archer had several brain scans early in his life to look for signs of brain bleeds (know as IVH). There was a small, questionable spot that was barely worth noting. Mom and Dad will have to monitor his progression closely to see if this is cause for any developmental delays.
• Seizures - Archer showed signs of having a seizure early in life. He was on medication for a couple of months. Since he has been off medication he has not shown any seizure-like activity. It's something Mom and Dad will have to watch for.
• Medications and Other Requirements - Archer has several medications and other requirements that he will be coming home with. Most of these he may wean off within a few months or less. It will require consultations from his pediatrician and other specialists that he will see.
• Archer is on medication to help reduce fluid in his lungs.
• Archer requires breathing treatments to help lung development.
• Archer is on medication to help his kidneys. He requires a checkup on his kidneys in a couple of months.
• Archer requires medication to help reduce reflux.
• Archer requires vitamins.
• Archer requires gas drops to help his tummy troubles.
• Archer requires a calorie fortifier mixed with his milk to help gain weight.
• Archer requires a 1/16 of liter flow of oxygen.
• Archer requires an apnea monitor that alarms if he stops breathing after 20 seconds.
• Archer requires a pulse oximeter to monitor his breathing levels.
• 4 Months Behind - Archer is already starting out in the world 4 months behind. His adjusted age started at his due date, March 26th. He will need practice performing physical and verbal exercises to catch him up to other babies his age. He is already showing some physical attributes that typical 1 month olds cannot do.

Mom and Dad must be cautious with Archer. As normal as Archer acts he has his limitations. At many times early in his life Archer will be kept from public places or large gatherings to avoid infections. Mom and Dad ask everyone to respect all rules when visiting Archer or caring for Archer when Mom and Dad need a night out. Mom and Dad do not want any of his requirements to prevent visitors. They love seeing family and friends and do not want to prevent Archer from meeting and playing with family and friends. Please, please make sure you are healthy when you visit. Please ask to visit. Please keep in touch with Mom and Dad, they need a social life too! It will take some time for Mom and Dad to figure out a schedule with Archer and please respect this time they need to adjust to a new life.

Homebound

Archer attempted a car seat study very early in the morning. He attempted it without the help of oxygen, and he failed miserably within the first few minutes. He was allowed to try again later in the morning, with oxygen, and he passed the two hour long test of sitting in a car seat without any poor breathing episodes. Because of this, and the fact that his breathing has been slightly less than acceptable while off oxygen, the orders were changed to Archer requiring a 1/16 liter flow of oxygen all the time, until the orders are reviewed and changed by a pulmonologist. Archer also passed a hearing test today in both ears. It was quite known that Archer's hearing had been good because he is a light sleeper that seems to recognize every beep or voice in the room.

Archer was then on his way to being released! At the NICU there is a wall of footprints of preemies who made a journey from the NICU to their homes. Archer finally got to add his footprint to this wall today!
Archer's belongings were gathered, his medications were picked up, and Dad installed the car seat (with help from a nurse). Mom and Dad said their goodbyes to the NICU staff that helped tremendously improve Archer's health. They hope to visit new friends they have met in the NICU and show how much Archer has progressed in future years thanks to their kind care.
The trip home was very quiet. Archer did not make a peep. He slept almost the entire way home.
Mom and Dad were greeted at home by a gentleman that delivered new equipment for Archer, oxygen tanks and cannulas. Archer received two tanks that can last up to 17 days on 1/16 liter flow and three portable tanks that can last up to 32 hours. Dad learned how to work the new equipment. The car was unloaded, a bottle was made for Archer, and the realization that Archer was home started to sink in.
Archer has taken full bottles and all medications in the short time he has been home. He has also slept the best that he has ever slept in the last 24 hours or so. Noodles met Archer and they are still trying to figure out the new situation. Mom and Dad are exhausted from having very little sleep since Archer's sleepover. It was realized that there is another long road ahead of them. It will take some time to figure out Archer's schedule and get a routine in place. Archer has several appointments already made with a pediatrician and many specialists. He will require special care when he is home, and Mom and Dad are thankful he was able to make the trip home in such good health. Thanks to everyone who made this trip home possible. 

Sleepover

Archer's ophthalmologist paid a visit today to check on the progression after the double eye procedure. The doctor said that he would place Archer in the top 10% of those who have undergone the procedure. He came expecting no change from the operation. Instead he found good growth of vessels growing in the right directions! This is a good early sign of recovery. Archer will continue to have weakly checkups unless Mom and Dad are informed otherwise.
Archer received some equipment that he will use when he gets home. Archer has an apnea monitor that will set off an alarm if he stops breathing for 20 seconds. Archer also received a nebulizer that will allow Archer to receive breathing treatments to help grow healthy lungs. He will receive this treatment twice a day. One of the doctor's orders is that Archer requires a small boost of oxygen only during feedings. Tomorrow Archer will receive more equipment to help with this task.
Archer invited Mom and Dad over for a sleepover in his room in the NICU. Mom and Dad will learn more about Archer's night time habits and how some of his new equipment works. Archer will undergo a car seat study soon. He must sit in a car seat for two hours without any poor breathing habits or bradys. He can take it again if he fails. If he passes this test, and shows no signs of other problems through the morning, then Archer is scheduled to be on his way home tomorrow!

Test Run

Archer had a test run of breathing without any oxygen support for most of the day. He did well but there was a considerable difference in his breathing levels from being on a 1/16 liter flow. There is still a chance that he will come home with oxygen support, or would need support during certain periods of the day such as feeding or sleeping. He will be monitored closely to see what his needs are throughout the rest of his stay in the NICU.
Archer will also be learning how to sleep on a leveled mattress without any blankets or supports around him. It was okay to have these blankets in the NICU because he was on constant watch and connected to monitors. This will not be allowed at home because it increases the risk of SIDS.
Archer received his first RSV shot today. April is the last month of risk for RSV this season. He will require one shot every month when the season begins again in the fall.
Archer weighs 6 pounds 3 ounces and is 18 inches long.

Low Flow

Archer seems to have fully recovered from yesterday's feeding hangup and he has taken all of his bottles over the last 24 hours. Archer also weaned down to the lowest oxygen flow setting which he might come home on if needed. He is down to 1/16 lpm and has done exceptionally well at this low setting which is very close to breathing room air.
Mom and Dad took an infant CPR class in which they learned how to resuscitate and dislodge a choking hazard with an infant. They also watched four informational videos on the subjects of SIDS, RSV, shaken baby, and car seats. Dad learned that if a baby is crying, it's okay to let him cry. Dad can take a break and watch television instead of caring for his baby. This helps Dad relieve his frustration.
Archer received a new Kate's Kart book: I Want To Be A... Fireman!

Brick Wall

Mom and Dad walked into the NICU to find that Archer had a rough night with taking in full bottles and his feeding tube was placed back in. He continued to have trouble throughout the day with Mom and Dad feeding him. He did finish one full bottle during the day that a nurse had fed him, though he struggled through it. The nurses spoke of a notorious "brick wall" that several preemies run into just after they have accomplished full feedings. This brick wall period consists of refusing to eat, or not doing well with feedings, for a day or two. Mom had an inkling about the milk and started questioning which batch of milk was used. The staff had been consistently using recently produced milk. Last night a nurse pulled out a batch that was made over three months ago. Archer was given several feedings last night and throughout today with this batch of milk. Mom and a nurse did a smell test and this older batch had a funky, metallic-like, smell to it. Archer was then given fresh milk in the evening. He struggled with one bottle, but then he finished the next without any problems. The hope is this was just a minor set-back to going home and that he bulldozed the brick wall with this last feeding.
Archer had a change in medication to help with fluid in his lungs. This was changed to a type that is easily accessible at pharmacies for Mom and Dad to pick up when Archer is home.

Eighteen Weeks Old

Archer had a fun and easy-going day with no changes. He kept his feeding tube out by taking all of his bottles. He received a nice tub bath and had story time, as he does almost every night. Though there has been no official date yet, Archer should be on his way home soon. Below are some pictures of Archer's room where he will receive a warm welcome home.

Lego nameplate designed by Dad.

Refurbished bassonett by Grandpa Long.

Toy photography taken by Dad, with assistance from Ottoville students (hot wheels cars).

Toy photography taken by Dad, with assistance from Ottoville students (Play-Doh monster by Dad).

Toy photography taken by Dad, with assistance from Ottoville students (Lincoln Logs Cabin by Dad).

Toy photography taken by Dad, with assistance from Ottoville students (Crayola Crayons).

Refurbished rocking horse by Grandpa Long.

Fun hanging light that was assembled together with several small pieces of plastic.

Closet for Archer's goodies. Dresser refurbished by Dad.

One Less Tube

Archer had another great day by weaning off oxygen flow and having good feedings. His liter flow was reduced from 0.2 lpm to 0.125 lpm, or 1/5 to 1/8. He is close to the lowest possible flow setting of 1/16. Some babies have a rough time without this small whiff of oxygen, even though it is extremely close to breathing room air. Archer may have a chance to try breathing room air without any assistance before he comes home.
Archer's feeding tube was taken out because he has not required any feeding through his tube in almost 24 hours. He has been taking full bottles. His tube will be placed back in if he doesn't finish two bottles in a row.

Off the Wall

Archer made a jump and got rid of the Vapotherm equipment that supplied his oxygen. He is now taking oxygen "off the wall" from a valve and oxygenation system. He went from taking 24% on 1.0 liters per minute flow to 100% on 0.2 liters per minute flow. The oxygen supplied must be maxed at 100%, though the amount going through is very minimal. He will most likely require a small amount of oxygen when he is home, and it's something he will hopefully outgrow within a few months time or less. This setup that is "off the wall" is very similar to what he will have at home, so it makes for a smooth transition.
Archer's feeding sessions are improving by the day. He is up to taking six full bottles or more (out of eight) within 30 minute time periods. The hospital issued nipple is working great. Archer still tends to fuss during feedings because of gas or sleepiness, but Mom and Dad are trying to help him work through it. He is taking gas drops every four hours and he loves the taste of them.
Archer has officially made it to 6 pounds! He received a new Kate's Kart book: 1 Fish 2 Fish Red Fish Blue Fish.

Back on Track

Archer started out the day by taking a bath in a plastic tub for the first time. The nurses believe that a tub is usually more calming than wiping him down with cloths. Archer seemed to enjoy this new experience.
Archer's oxygen level made it back down to 25% since yesterday's procedure. He also took four full bottles, in four feedings, in a row! He then began to act tired for his next couple of feedings. His endurance seems to be improving when it comes to taking a bottle. Mom experimented with a hospital bottle nipple that seems to have a better flow of which Archer can take a bottle quicker without choking. A surgical nurse checked his hernia again and the consensus is to wait until Archer is about 55 weeks to have surgery, unless there is a medical concern beforehand.