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.

Rattle

Archer has been doing well at home in recent weeks, though he has caught a cough/cold as well as a small case of thrush (small blistering of lips and bad diaper rash). He has not needed emergency trips to the hospital or pediatrician, which is always good news.

Archer had his last appointment with his ophthalmologist yesterday. The doctor was extremely pleased with Archer's progression since his eye procedures. Archer will now see a pediatric ophthalmologist for follow-up appointments, then he will graduate to a local ophthalmologist to check for lazy eye, crossed eyes, cataracts, and other eye ailments that could come sooner or later in life. He will require regular eye appointments for the rest of his life to check for such ailments. Though for now, his eyes seem to be perfect.

Archer had a sleep study last week to see how his breathing levels were at night time. The results came back as Archer having less than tolerable levels just 13% of the time. This was not convincing enough to take him off oxygen just yet. He will undergo another study in a few weeks. He is still on 1/16 liter flow of oxygen during the night time. 

Archer has also started to consistently gain weight, averaging about 1/2 pound a week. He is now up to 8 pounds! He is taking in breast milk mixed with formula to make it about 25 Calories to help gain weight.

Archer has been smiling much more in the last week or so. He often smiles when playing with Mom and Dad or when he is playing with his toys. He is also learning to grasp his toys, as he will hold a rattle for a few seconds and shake it up and down. He is still working on crawling and rolling over. He enjoys tummy time (when he doesn't fall asleep) and working on keeping his head up and making crawling motions. He is verbalizing more, trying to tell Mom and Dad what he wants (Mom thinks he is saying "Ma!").

Smiles

Archer paid a visit to see a neurologist a few days ago. After Archer was born, a small brain bleed was detected and a nurse observed him having seizure-like movements. The same neurologist also paid a visit to the NICU and put Archer on anti-seizure medication for a couple of months. This time around the neurologist was very optimistic about Archer's health and brain activity. She saw a very healthy baby that did not seem to have any cause for worry. She gave Mom and Dad the option of having Archer undergo an EEG to look for abnormal brain activity. An appointment was made a few months from now with the option of canceling the EEG if there is a consensus that it is not needed. Archer also had some lab tests done on this day to see if some of his medications could be reduced or cancelled. It will be a few more weeks until there is a decision on this.
Archer's fussiness at home seems to be reducing. The pulmonologist would like Archer to be taking in 27 calorie feedings. Mom and Dad have worked Archer up to about 25 calorie feedings. Any more than this and Archer gets super fussy and backed up. He has started to gain weight at a normal pace. He is up to an unofficial weight of 7 pounds 8 ounces.
Mom and Dad are trying to teach Archer to smile on cue. He does not smile often, though more than weeks prior.

Calories, Calories, Calories

Archer had his second appointment with the pulmonologist yesterday. During his first visit the doctor said that she would like to see him gain about 8 ounces per week, and be on 27 calorie fortifier mixed with milk. She said Archer was not on the growth chart and her goal was for him to gain weight in order for him to wean off oxygen sooner. A week after that appointment Archer became very fussy and did not handle the calories well. Some phone calls were made and Archer's reflux medication was doubled and then changed, and a new brand of fortifier was tried. Since this change Archer has been less fussy, and he has gained a few ounces, whereas he was really struggling to gain weight during the first two weeks at home.
During this appointment the doctor was pleased with his overall health. She said his lungs sounded much better, he was not congested, and he was just more healthy than two weeks ago. She was not pleased with his weight gain, as he now weighs six pounds 10 ounces. She again doubled his reflux medication, and Mom and Dad will attempt to slowly add more calories to Archer's milk in order to get him up to 27 calories per feeding. A nurse mentioned that it usually takes about six weeks for most babies to really start gaining weight with a growth spurt and hopes this is the case for Archer.
Archer also had a ten-minute test without the aide of additional oxygen. The respiratory therapist was pleased with Archer's breathing levels. He is now allowed to be off oxygen during awake times. In two weeks he will undergo a night study to see how he does during sleep times, and if he will be well enough to be off oxygen altogether. Archer will see the pulmonologist again in four weeks.
Archer's fussiness has decreased some since being home. He will have a "crazy time" in the evening that lasts a few hours, where he will eat off and on, fuss, and requires constant attention. According to the doctor this is normal baby fussiness that occurs during a busy time in the household, like cooking dinner and cleaning up from the day.
Mom and Dad are pleased with Archer's progress. He seems healthy even though his fussiness can be overwhelming at times. He is starting to smile more often, his feedings are getting better, and he is really enjoying playing with his toys. He sleeps well at night and wakes himself up about every three hours to eat, then falls back asleep.  The Kumfer family is surviving the stressful times and having fun along the way!