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!

Hernia Surgery

Archer woke up Mom and Dad this morning screaming, which is not his normal behavior, and it was difficult to calm him down. Dad looked at his hernia and it was the largest he had ever seen. He could not reduce it by hand as he normally would. Mom made a call to the pediatric surgeon whom Archer was going to see next week to discuss when to schedule the hernia surgery. Archer had already made the decision to have it today. The Kumfer family headed to the hospital to meet the surgeon and had him give a final look to see if Archer indeed needed surgery. The surgeon reduced the hernia though he admitted it was fairly large and said it would be wise to go ahead and perform the surgery, along with a circumcision, later in the afternoon. Mom and Dad met with a couple nurses and the anesthesiologist who explained the procedure. Archer was then taken to the operating room as Mom and Dad said their goodbyes. The surgery did not last more than one hour and the doctor said that everything went perfectly fine. He spoke more about the process of the circumcision than he did the hernia repair. Archer was put on a ventilator during the surgery and he was off it as soon as the surgery was complete. He was then put on 1/2 liter flow of oxygen through a cannula. He was very fussy when Mom and Dad met him in the recovery room. He was able to take some water as he did not eat anything for the majority of the day. The Kumfers then moved upstairs to a pediatrics floor where they will stay the night to let Archer recover and have nurses keep a close eye on him. He has been very fussy when he is awake. This is common as the anesthesia starts to wear off. He is also very gassy, which is an affect from the anesthesia, and the gas could be making it uncomfortable near his incision areas. He is allowed to take Tylenol every four hours to help ease the pain. If all goes well then Archer should be ready to go home in the morning. Mom and Dad have been told that babies tend to thrive better, as in eating more and having less reflux issues, after such a surgery. Archer's overnight pneumogram study has been postponed until next week.

Crystal Clear

Archer has been very busy the last few weeks. Along the way he has been laughing and learning new talents. He is constantly putting his hands in his mouth, along with other things. This is supposed to help him make new sounds as he learns about how his mouth works. Archer has also started seeing new occupational, physical, and speech therapists at a local hospital. They help him with exercises and feeding techniques to help get him caught up with other babies his age. They are all very impressed with his progress. Dad practices exercises with him everyday to help him do things like touch his toes, roll onto his sides, develop good trunk muscles, and sit up. When Archer plays on his own he mimics these movements quite well. He also talks to his toys and is getting better at propping himself up during tummy time. Archer also had his first experience in a large swimming pool. He is picky about the water temperature, just like his parents. He enjoyed kicking and splashing water at Grandpa Long as Dad held him. He has also significantly increased his milk intake and has finally hit the double-digits! Archer was 10 lbs. 6 oz. at his weigh-in today!
Archer had an overnight oximetry study at home a couple of weeks ago to see if he still required oxygen. Shortly after he had a follow up appointment with his pulmonologist. After this appointment, Mom and Dad decided they were uncomfortable with this particular doctor. A couple of days after this appointment Mom received a phone message to increase Archer's oxygen intake during sleep times because it might help him with weight gain. Mom and Dad were frustrated with not getting many answers regarding Archer's health and felt that his needs weren't being met. They quickly decided to change pulmonologists with the help of the pediatrician's office.
Today, Archer met his new pulmonologist, who had several good reviews and was also highly recommended by a case manager. The new doctor's initial thoughts were that Archer physically seemed very healthy. His lungs sounded very clear, and he did not react poorly to any quick tests by increasing respirations or work of breathing. He mentioned that Archer's vocal chords sounded very good after being on a ventilator for over 60 days in the NICU. The doctor was a little perplexed about some previous decisions that had been made regarding Archer's lungs and oxygen requirements. He reviewed the most recent overnight oximetry results but said there is not enough information to determine if the data is accurate and whether Archer can come off or requires a higher flow of oxygen. He then sent Archer to receive a chest x-ray as Archer has not had one since he left the NICU. After the x-ray the doctor seemed very pleased. He said that by the x-ray you would never be able to tell that Archer was a micro-preemie with Chronic Lung Disease. Archer's previous chest x-rays always looked hazy or fuzzy, but Mom and Dad observed that this x-ray was crystal clear! The pulmonologist spoke with Mom and Dad a little longer, along with a respiratory therapist. Mom and Dad agreed to a different type of overnight study that is more complex than just setting up a pulse oximeter at home. In two days they will stay overnight at a hospital with Archer while he undergoes a pneumogram from 4:00 pm until the next morning. Archer will go about his normal evening and nighttime routine with Mom and Dad. Without oxygen, he will be hooked up to a pulse oximeter and a monitor on his leg to see if his leg movements affect the oxygen reading on the pulse oximeter, as this can throw off actual numbers. His heart rate and respirations will be monitored to see if they correlate with drops in his oxygen saturation levels. He will also have a special cannula in his nose to measure the amount of air intake. If his saturation levels stay consistently above 88% without any major events, then there is a good chance that Archer can come off oxygen altogether. If it appears that he still requires oxygen, then his flow may have to be increased because as he and his nostrils get bigger there is more room for the oxygen to escape. If Archer were to come off oxygen, then he will still require an apnea monitor at home for at least another month to make sure that he is through with having any real events (he hasn't seemed to have any, almost all alarms during the night have appeared to be false, although Mom and Dad are still awaiting the results of an apnea monitor download). Then his medications will most likely be reevaluated and hopefully he will not require them, as this doctor prefers to wean babies off oxygen and medications quickly after being released from the NICU. Mom and Dad were very pleased with Archer's new pulmonologist and feel like a plan is now in place to meet Archer's needs.

Splash Time

It's been two weeks since Archer's last pediatrician appointment. He was due for a weight check to see how much weight he could gain on a 24/25 calorie fortifier. He was also due for more vaccinations. On his last visit Archer weighed 8 pounds 5 ounces. For his weight check, in 15 days time, he gained 14 ounces, bringing him to 9 pounds 3 ounces! The pediatrician was very pleased with this gain and it helped Archer get back on his own growth curve. He then took his vaccinations and proceeded to be fussy for the rest of the evening. Mom and Dad are happy about his weight gain and they will see what the pulmonologist says about his weight in one week.
Archer also had an appointment with his new pediatric ophthalmologist. The doctor checked for crossed eyes, motility, nearsightedness, and other ailments that may come from being premature. After Archer got poop on Dad in the middle of the appointment, the doctor found that Archer's eyes are as perfect as they can be! He is farsighted (a very good sign), has full motility, and no signs of crossed eyes or lazy eye. He does not require glasses at this time. The doctor did stress that sometime problems can arise later in life. Archer will have another appointment in 6 months.
Archer will undergo another sleep study tomorrow night to see if he still requires oxygen. There will also be another apnea monitor download to see if any of the apnea alarms have been false or real. Many times when the alarm goes off in the middle of the night, it seems to be a false alarm. When this happens, Archer looks like his breathing is fine, has good skin color, and most of the time the electrode leads on his chest came off. A monitor download was attempted a couple of weeks ago, though all the data gathered since Archer has been home was found to be corrupt.
Archer has become a chronic bathtub pooper. He also loves to splash and kick throughout bath time as well as pool time. He is also fond of finding his thumb to suck on and doing playtime and therapeutic exercises with Mom and Dad. He can hold a toy with one or two hands. He is starting to grow into 3 month old clothes and is wearing size 1 diapers. Most of the time he acts happy and healthy. His colic seems to be slowly going away, as he is only fussy a couple of nights a week. His milk intake has been slowly increasing as well, and he is starting to spread out his feedings more. Mom and Dad have attempted other types of bottle nipples because a speech therapist showed us that he had a weak suction. A different bottle type has been used the last couple of days and it seems to be working just fine.

Rolling Over?

Archer recently had another appointment with his pulmonologist. She said that he looked very happy and healthy, though she was unhappy that his weight was still off the growth chart and that he had not tolerated a 27 calorie fortifier with his milk. The previous three weeks, between appointments, Archer gained 1 1/2 pounds. This was on track with what the pulmonologist had asked for, yet she was still unhappy. She then changed a medication to help with constipation so Archer could tolerate a 27 calorie fortifier. Archer tried out this new medication for three days while Mom and Dad added more calories to his milk. This combination made Archer do two things during this time: 1) he grunted and tried to poop 24 hours a day; 2) he ate about 1/3 of what he would normally eat. So Mom and Dad stopped this medication and went back down on calories. While on the new medication Archer probably lost a few days of growth.
One week after this visit Archer had an appointment with his pediatrician. She was not concerned that he was not on the growth chart but was worried that he started to fall off his own growth curve. She understood Mom and Dad's concerns about the calorie fortifier. She said to continue what Mom and Dad were doing before the last pulmonologist visit, when Archer had gained 1 1/2 pounds. She set an appointment to come back in two weeks for a weight check to see if Archer could get back on his growth curve with a 24 or 25 calorie fortifier. At this checkup he weighed 8 pounds 5 ounces, and he seems to have gained a few ounces in the last three days since the appointment. Archer also received a follow-up combination vaccination. He will receive the rest of his vaccinations during his weight check appointment.
Archer also visited a speech therapist, physical therapist, and an occupational therapist. They observed his motor skills and eating habits. In some ways Archer has the abilities of a 4 month old, and in other ways he is right on track with his adjusted age, over two months old. Mom and Dad received information on how to teach Archer some new skills. They are also looking into receiving more therapy to help Archer catch up with other 6 month old babies. Archer can follow someone with his eyes, even when they are fairly far away. He has good head control when sitting up or being held. Archer enjoys tummy time and has inched forward some while attempting to crawl. A couple of times he has pushed himself over from his tummy to his back when his hands were out in front of him! He is grasping for toys and verbalizing more often. He is very fond of finding his thumb and bringing it to his mouth. He could sleep more at night, though Mom and Dad wake him up to feed him to make sure he gets the calories that he needs to grow. He is still sleeping in a rock-n-play to help with reflux, which has improved greatly with a couple doses of Prilosec each day.
Mom and Dad have been trying to take Archer out more while also being cautious. Archer has been on walks, was taken to the park, had his first sleepover at Grandma and Grandpa Long's, and has mingled more with friends. He has also been to a couple of restaurants and taken on shopping trips but sticks close to Mom & Dad.