No More Adjusted Age...

Its been awhile since I posted, just because things have been busy with work and school, and of course, the kids. Jack had his second birthday. With it, we can no longer refer to him by his adjusted age. By age 2, he should be completely caught up, and for the most part he is. In physical therapy, he is performing right on target for his actual age. In occupational therapy, he isn't far behind. However, we are still fighting delays in speech therapy. His physician isn't worried about it, and neither am I. He's still gaining weight, slowly but steadily, so we're not too worried about that either. Hopefully now that's two his breathing problems will subside and he won't use so many calories trying to breath. All is well for now....

Most Recent Preemie Clinic

Today was our first appointment with the preemie clinic since January. Everyone said Jack looked great. Dr Gus said he wishes he knew what went right with Jackson so he could use the information to make every preemies outcome as good. He does want Jack to start taking Pediasure to gain some weight. Hopefully that will work.
Also, Jack met with OT today and his therapist says he's making such excellent progress that we probably won't have to keep coming much longer. YAY!

I Can See Clearly Now...

So many things have happened since my last post...the last week of January, Jack was admitted to the hospital. Over the previous weekend, Luke and Beau were both sick with ear infections, which was weird because they are never sick. By Monday they were feeling better, but on Tuesday, when I picked Jack up from preschool, he looked very tired and had a runny nose with just a slight wheeze. By 10pm that night, he was having such a difficult time breathing that my husband took him to the emergency department because I, too, was very sick. Luckily, having worked there when I delivered Jack prematurely, the charge nurse immediately and appropriately (HA) took charge and grabbed Jack before he could even be triaged. She took him to a room, grabbed a doctor along the way and quickly gave a full medical history. The doctor diagnosed him with respiratory failure and sent him to the PICU, where our pediatrician saw him not too long after. He spent two days in PICU and then three more days on the pediatric floor before he could finally keep his o2 saturation above 95%. After coming home he was on oral steroids and Xopenex breathing treatments, but now we just do the breathing treatments when he is audibly wheezing. So far, so good.
Now that the bad stuff is out of the way, here's the GOOD STUFF:
Midyear last year, Jack started Physical, Occupational, and Speech Therapy at the referral of the preemie clinic as well as our pediatrician. He was attending OT and PT twice a month each, and Speech every week. Because of the excellent progress he has made, we now attend each therapy just once a month. That's right, folks!!! That means he is walking and vocalizing. He can now walk hands-free for short distances by himself AND he can say quite a few words, including: momma, dadda, bye, bawbaw, bubba (aka Luke), Beau Beau (aka Beau), and MINE, as well as fake a sneeze. HAHA He has also tested negative for autism, which we are ecstatic about. We attribute all of his progress not only to his therapy and their recommendations, but also to his moving up to a new class at school with older children that he can interact with.
That brings us up to date with today, which was very momentous. Today, Jackson got his first pair of glasses.

CUTEST BABY AWARD GOES TO...

Recent Developments

The holidays were WAY too busy at our house! And so much has happened! Jack is making excellent strides in all of his therapy.
In Speech Therapy, he's FINALLY started using his voice, especially when he's playing. When he pushes cars across the floor, he'll make an engine noise that is just too adorable. Obviously he is paying attention to his older brothers! He's also using sign language, but just at dinner time. He'll sign "more" and "milk". We're working on signing "all done" and "thank you".
In Physical Therapy, he's trying very hard to walk. In our last session, he was standing without holding onto anything, and the therapist held out some Cherrios. He took two steps, took the food out of her hand, and stood there eating them without holding onto anything. She believes he has the strength to walk, its just getting the confidence to do it.
Yesterday in Occupational Therapy, he just blew the therapist away. Though speech development has been his biggest hurdle, he's had to work very hard on his fine motor skills as well, and yesterday it paid off. He was playing with a bucket with a lid that had shapes cut out on top. He consistently took the lid off of the bucket and expertly placed it back on. We clapped everytime he did it, and when we didn't clap, he clapped for himself! He then showed off by placing the appropriate shape in the appropriate hole. Then the therapist turned the bucket upside down, which irritated Jack a little and he kept trying to turn it over so he could put the blocks in it. But then she placed two blocks on top of the bucket and started to say "I wonder if he will stack them." She didn't get halfway through her sentence when he picked one block up and placed it neatly and purposefully on top of the other. Our therapist, Carrie, was speechless. She finally said "I didn't even have to show him what to do..." And then I stated that I hadn't ever seen him do that at home.
He's been doing so well that we are now going to cut down on some of the therapy. Speech therapy is every other week now, instead of weekly. Occupational therapy is now just once a month. Until he starts walking, we're going to continue to do physical therapy twice a month.
Next week, Jackson will move up from his infant classroom at school to the young toddler room, or "wobbler", as our school classifies it. It will be a sad move, because he has grown so connected to his teachers, and they have just fallen in love with him over the past 14 months. But I know that this will be best for him, and in the visits he has made to his new class, he has acted like he owned the place, so I'm sure that he will be fine.

Santa Baby!

See-Through Eyes

I don't know if this is common after laser eye surgery or not, but Jack has incredibly small pupils. So small that they usually have to dilate his eyes twice at the dr's office. We were out at dinner on Friday night, and a man walked up to our table and started talking to our Jack, who was, as always, all smiles. The man stated that he loved Jack's eyes, and I explained to him that Jackson was a preemie who was born at 1 pound 6 ounces and that the way his eyes looked is a result of a condition he has. The man stated that he, too, was a preemie and that he had weighed 1 pound 9 ounces when he was born. He stated that my son had "see-through eyes", which is a Native American saying, meaning he is enchanted. I just thought that was so interesting, and I have been searching the internet trying to find more information about it, but I haven't been able to.

Latest Eye Appointment

We've tried patching Jack's eye for the past 6 weeks to strengthen his eyes and keep them from turning in, but it wasn't very successful. It was nearly impossible to keep a patch on him! We went in for an appointment yesterday to see if there was any progress made, but there wasn't. What little patching we were able to accomplish did make Jack use his eyes more equally, so that is a definite plus. I mentioned to the doctor that some other preemie moms had their babies on eye drops to correct the problem, and he agree that that would be the next best step. The drops are phosphoric iodide drops, which has to be special ordered from the manufacturer because no pharmacies in Tulsa keep it on hand. Dr. Denslow also stated that Jack is much more near-sighted than at his previous visits, which we suspected because he is obviously squinting now. Dr. Denslow would put him in glasses now if he thought he would wear them, but more than likely he won't, so we are going to wait until we're a little closer to his 2nd birthday in May, but he could get glasses as early as January.
Coming up...Jackson has an appointment with the developmental preemie clinic next week. Since they are the ones who suggested we get a referral from our pediatrician for his therapy I am excited to see what they think of the progress he's made in the past few months.
Also, he has his 18-month check up at the end of the month, and I can't wait to update his pediatrician on his progress as well.

The journey of 1000 miles begins with one step...

Jack had a busy day today! First, speech therapy with Karen, who thinks that Jack is doing great at paying attention and he's not putting everything immediately in his mouth. She's concerned that he doesn't vocalize at all to get attention or to let her know when he's upset, like if she takes a toy away from him. If she takes something away, he just sits there and looks at her, like he knows if he sits long enough she's going to give it back to him.

This afternoon he had physical therapy with Monica, and she is just wonderful. Because she had to move our appointment to today and after school, I had to bring Beau with me as well, and she incorporated him into Jack's therapy, which he thought was really fun. Monica is positive that Jackson is *thisclose* to walking!!!! She can tell that just since he started therapy he's gotten more trunk control and that his ankles are getting looser. He really tries very hard to do everything she wants him to do. He's such a trooper!

Still no glasses...

Jack has eye appointments every six months, but I started to notice his right eye turning in, so they moved his appointment up 3 months. He saw Dr. Denslow today who says that right now, Jack's vision is still very good, but he does have the turning in and he doesn't use his eyes equally all the time. So for the next 6 weeks my 16 month old has to wear an eye patch! HA For two hours a day, alternating eyes every day, he has to wear this bandaid-like patch over his eye to strengthen the muscle. Hopefully this will work, or else its another surgery, and we don't want that! We are hoping getting tubes placed last week will be his last scheduled surgery.


Therapy, therapy, therapy! I love to see Jack getting the help he needs, and he, of course, adores the attention. He started speech therapy last week at the hospital with our awesome speech therapist, Karen, who also sees him at the preemie clinic. She blew bubbles in his face and he loved it! She also uses a massager on his tongue because she thinks maybe he has lost some sensation in it due to the fact that he was intubated for so long. Karen thinks we have a lot of ground to cover in the next six weeks, but she's hoping there will be a big improvement at his next appointment because of his surgery last week.
Next, its over to Therapy Time. The occupational therapist and physical therapist were both very happy with the progress Jackson has made since he has come home and are stunned at how well he is doing in spite of his extreme prematurity. OT wants us to focus on shoulder strength, clapping, banging toys together, and putting objects inside a container. PT wants us to focus on "keeping him right with the world" which means sitting him on an exercise ball and rolling him side to side, making sure that he uses his abdominal muscles to keep his head and shoulders parallel to the floor, which will work the muscles he needs to be able to stand on his own and eventually walk. His PT doesn't think walking is very far off. YAY! It was great to get such encouraging news from everyone. We're excited to see how he benefits from the therapy.

New Developments

Lots of new things to discuss. Jack has surgery on Wednesday to get tubes in his ears. He starts speech therapy this week and has his evaluations for occupational therapy and physical therapy this week as well. We took him off formula and he is doing wonderfully on regular milk. He drinks quite a bit more of it than he did the formula, so we're sure his calorie intake has gone up. And, great news! Jack has finally started sitting up unassisted!!! He looks like such a big boy sitting in the floor, holding his toys instead of having one hand down on the floor to hold himself up. Plus, he now has two new teeth to gnaw on them with. Both teeth seemed to sprout simultaneously and instantly, and believe me, he is trying them out on everything!

More updates to come after therapy starts...

Busy, Busy, Busy

Yesterday, Jackson had his 15 month check up. The doctor is happy with his steady weight gain and projects that he will catch up to a normal weight at around 2 years of age. Dr. Setter agreed with Dr. Gus from the preemie clinic and referred us to PT, OT, and Speech Therapy. Dr. Setter is also concerned about Jack's multiple ear infections, so he is also referring us to an ENT for possible tube placement. He thinks that once Jack gets the tubes put in and the fluid drains out, then Jack will be able to hear better and start talking.
This morning, Jack had urological surgery. At 6am, we got to St. Francis, and shortly after arrival they gave Jack some "Giggle Juice", which made him very loopy. They then took him to surgery where they gave him gas to put him to sleep and then put in an IV and started the surgery. It took about 45 minutes, and then Dr. Miller came out to the waiting room and told me the surgery was a success! When I got to recovery, Jack was still very groggy and starving! He ate 3 bottles of "sugar water" and once his O2 saturation was back to normal we got to take him home. For the rest of the day he slept off the anesthesia and was still very comfortable because the local anesthetic that the doctor gave hadn't worn off yet. We'll see how he does tomorrow....

Developmental Preemie Clinic

Yesterday Jack had his appointment with the developmental preemie clinic. The audiologist checked his hearing, which was fine. Dr. Gus wasn't concerned at all about his slow weight gain. In fact, he didn't even recommend we see the dietician. He was happy with Jack's progress, and again voiced to me how lucky we are to have such a healthy and happy baby born so soon, though he is concerned about Jack's speech and the fact that he's not voicing any consonants. He's also concerned about Jack not being able to sit up on his own yet. The physical therapist, Micah, spent quite a bit of time with him and compared his progress on her charts, which shows he has completely skipped the sitting up milestone and gone directly to the crawling and pulling up milestone. She said when he pulls up, he uses his arms and legs instead of any trunk muscles, and when he sits, he has to prop up on one arm. She showed me some exercises to encourage him to develop those trunk muscles, and Dr. Gus is going to contact our pediatrician about getting Jack referred to speech therapy, physical therapy, and occupational therapy.

In other news....Jack has gained almost a pound in the past two weeks!!! Under the advice of my very knowledgeable and helpful sister-in-law, Kelly, we took some steps in increasing Jack's calorie intake each day and it has worked wonderfully! YAY!

The usual battles

Jack has bilateral otitis media with a ruptured left ear drum. The poor little guy is always so happy that we can't ever tell he's sick. He didn't have a fever until last night, and he started screaming at 1am, which is probably when his ear drum ruptured. He's had more ear infections than Luke and Beau combined. The doctor explained today that there is probably some issues with his eustachian tube from being premature, which does explain a lot, but I just absolutely hate for him to be in pain. It seems like he has one every other month.
And today, when they weighed him at the doctor's office, I just knew he was going to weigh more than he did. It was a huge disappointment. He's been eating so well, and he looks bigger. On May 28, he weighed 13 pounds 6 ounces, and today he weighed 15 pounds 6 ounces. Two months and he's only gained two pounds? I feel like he eats constantly. Its so frustrating. I know all of the other preemie parents have gone through this, but I just want to scream! And the preemie clinic had to reschedule his appointment so we have to wait a few more weeks to see his dietician. I know they don't intentionally do it, but they make me feel so guilty when we go in there and he hasn't gained what they think he should. I don't know what else to do.

Interesting News....

I read an article this morning about a report that says 1 in 8 babies will be born premature. More than half a million babies are born prematurely each year, and specialists are urging that doctors take new steps to battle one cause: infertility treatments that spur twins, triplets and other multiple births. But despite a booming business, infertility treatment explains only a fraction of the nation's huge and growing problem of prematurity. One in eight babies now is born at least three weeks early, many even earlier, a rate that has increased more than 30 percent in two decades. Trying to help these fragile infants survive and thrive costs the nation at least $26 billion a year, and there's little likelihood of improvement soon because doctors don't know the cause for most preterm births or how to prevent them, and have few good ways even to predict which women will go into preterm labor, concludes the report, which calls for urgent research to try to turn the tide. Babies born before 37 weeks of pregnancy are premature. Those born before 32 weeks face the greatest risks of death — about one-fifth don't survive a year — and long-term health problems, such as cerebral palsy, retardation or learning disabilities, asthma and other conditions. Doctors have made great strides in helping preemies to survive, even those born as young as 23 weeks, and most who do survive infancy grow up fairly healthy. But being even a few weeks premature can increase the risk of health and developmental problems.
Any woman could have a premature baby. But black women have the highest risk: 17.8 percent of their babies are born prematurely, compared with 11.5 percent of white women and 11.9 percent of Hispanic women, the report found. Poor women are more at risk, too, as are mothers-to-be who are under age 16 or over 35. Certain infections can trigger preterm labor. Other risk factors include poor diet, maternal stress, lack of prenatal care and smoking.
But differences in behavior and socio-economic conditions can't fully explain the disparities. In fact, the prematurity rate for black women has slightly improved in the last decade even as it increased among white women. Why? Black women are less likely to undergo the infertility treatments increasingly embraced by white women.

In other news...Angela Magdaleno, 40, who had triplets three years ago, gave birth to quadruplets on July 6 by Caesarean section in what doctors said was a rare occurrence of multiple births. Though she used fertility drugs with the triplets, she didn't with the quadruplets. When the quadruplets come home, Magdaleno will have help from two older daughters. All 11 family members will be living in a one-bedroom apartment in east Los Angeles. She said the living room is large, but she isn't sure what the family will do when the babies get bigger. Can you imagine?!?!?

Growing Boy!

Jackson has finally started gaining weight! About two weeks ago, he began eating table food, and he is doing great! We figured it was time to start feeding him real food since he kept trying to take our plates! He's started eating breakfast, lunch, and dinner every day. And now that he's eating so much, his wheeze is a lot less noticeable, almost non-existent most of the time. He hasn't been weighed in over a month, but the weight gain is obvious! His next appointment with his dietician at the preemie clinic will be July 19, and I can't wait to hear what she has to say! I'm also anxious for him to see his physical therapist. I'm sure she'll be surprised to see how well he is crawling! And last night he pulled up on a box!
On June 6, Jack went to the eye doctor, who said that right now Jack can see just fine. In December he was far-sighted, but he has grown more near sighted, so right now he has fairly good vision. He is growing increasingly near sighted, so in December when he goes back to the eye dr, he may need glasses.

Jackson's First Birthday

Yesterday was a wonderful day. Jack turned 1 year old. Its so hard to imagine. When I woke up with him at 6am yesterday morning, it didn't even dawn on me what day it was until I had made his bottle and begun feeding him. I looked at him as he ate and when it hit me, I started to cry...it doesn't even seem possible. Last year at that time, I didn't even know he was going to be born that day. The doctor came in, asked me how I was doing, and he left as I prepared to sit in my hospital bed for another day. But that day changed our lives...those first few days after he was born, we weren't sure if he was going to be strong enough to make it. It was the beginning of an emotional rollercoaster. When I visited him, for weeks I couldn't stop crying. There was my beautiful baby, so tiny...fighting for his life...it took so long for him to get over 2 pounds, and then 3 pounds...we didn't think we'd ever get to hold him. But when he was 3 months old we finally did, and it was wonderful. Since he got out of the hospital in late September, I still feel like I haven't held him enough to make up for all that time that I didn't get to. Clint used to make me go lay him down because I never wanted to! Now he looks so big! And he's crawling all over the place. It makes me so happy! I loved having everyone over yesterday to celebrate his birthday, his life. Clint's brother, Steven, talked yesterday at dinner about how last year, on the day I went in the hospital after my water broke, we weren't sure how the situation was going to turn out, and he had called Floral Haven to see what services they offered. He said yesterday as he drove by the cemetery, with the Memorial Day decorations out, at a time when he thought his grandfather would come to mind, it was actually Jackson he thought of. As he told everyone in his Sunday School class about Jackson's first birthday and about driving past the cemetery, he began to cry. It fills my heart with wonderful feelings to know that so many people love Jackson and prayed for him, his health, his survival. I couldn't be happier.
Clint and I started our own tradition last night. Last year, after I had my epidural, once I gave birth to Jackson I was so heavily medicated that I slept all day long. I finally woke up at around 9pm, took a shower, and went back to my bed, wide awake. Clint brought his laptop to my hospital room and we sat in my bed and watched the first Lemeny Snicket movie. Last night, we sat in the living room and it dawned on me that never again will I enjoy being pregnant. Never again will I celebrate a baby's first birthday. As Clint held me, he suggested we go to bed and watch a movie, which I thought was a wonderful idea, sort of recreating the night one year before, and we decided that we would try to do the same thing every year on the night of Jack's birthday.

Urologist Appointment

I took Jack to see his Urologist on April 23 and the appointment went well. The doctor looked him over and said that the doctor that did his first circumcision in the NICU left more than enough skin behind to be able to repair any problems that may surface, such as the hypospadius and the cyst. The doctor has scheduled surgery for August 30 to repair Jack's hypospadius, revise his circumcision, and remove a cyst. Its outpatient surgery.
Once we get this problem taken care of and figure out what is causing his wheeze and repair that, we will be able to really focus on getting him to gain some weight!

Pulmonologist Appointment

I took Jack to see Dr. James Phillips on Monday. He listened to Jack's lungs and then asked if anyone had ever mentioned anything about cystic fibrosis coming up on his newborn screens. I said "NO!" He said he hadn't read anything in Jack's NICU discharge, but he just wanted to make sure. He listened to Jack again, and then he had me give him a breathing treatment in the office. Afterwards, he listened again, and he said that the treatment really didn't seem to make that much of a difference. He said that if the wheezing was because of the bronchiolitis, the albuterol would take care of it. He said that he thinks it may be one of two conditions: one, fluid may be leaking into lungs when he eats; or two, he may have a vein going to his heart that is putting pressure on his airway and causing the wheeze. We will do a swallow study within the next few weeks to rule these out. He said he wasn't very concerned about the wheeze, that nothing is sending up a red flag for him. He told me not to worry (YEAH, RIGHT!). He said that for a 23 weeker, we definitely got very lucky.

Busy Day

Yesterday Jack had two appointments. In the morning, Jack got his last RSV shot for the season. YAY!
In the afternoon, Jack had an appointment with Children's Medical Center Developmental Preemie Clinic. At this clinic, Jack sees a nurse, an audiologist, a dietician, a physical therapist, and a physician, Dr. Gus. The nurse weighed him, and at 10 months he weighs 12 pounds, 7 ounces. His hearing checked out just fine, like always. The dietician suggested that we not start any solid foods. She said that the reason to start food before one year of age is to teach feeding techniques and get the baby used to taste and texture. There are no nutrional reasons to start feeding solid food before one year. All he needs is formula. She stated she was afraid he may have some aspiration problems and that we need to wait until after his appointment with Dr. James Phillips before we make a decision about starting solids. The physical therapist was very surpised at how well he was rolling over and reaching for toys. She ranked him in the 25th percentile for his chronological age. Dr. Gus came in and had the best news of all. First, he commented on the fact that Jack blinked quite a few times when the light was on. He said that Jack is photophobic and that if his retinopathy was that bad the light wouldn't bother him because it wouldn't get to his retina. He said the reason that Jack is so photophobic is because his skin and his eyes are very pale, which is related to the fact that we live so far north. People that live near the equator have darker skin because they get more sun exposure, thus more exposure to Vitamin D. We in the US have lighter skin because we don't get as much sun exposure, so our skin has to be lighter to soak up as much of the exposure that we do get. I laid Jack on his back and he immediately flipped over and started scooting across the exam table. Dr. Gus then confessed to me that when he evaluated Jack in the NICU, he didn't think he would ever be capable of the milestones he is reaching today. He said we were very blessed and that he can't believe how well Jack is doing.

Breathing Problems

I decided to transfer Jack's NICU diary to Blogger because it will be easier to keep everyone updated on how he is currently doing.
Since he was released from the hospital, Jack has been going once a month for RSV shots and also for Developmental Preemie Clinic appointments with Children's Medical Center. At his last appointment, the physical therapist said that Jack was almost right on target with his adjusted age. We are now working on getting him to sit up.
Since January, Jack has had problems with wheezing. It started out as Bronchiolitis which was aggravated by an ear infection, but the doctor has since diagnosed it as a chronic wheeze. Jack was originally placed on an Albuterol inhaler, and the doctor has now added a Flovent inhaler as well. While these medicines have improved his wheeze, they have not completely taken care of it, and therefore our pediatrician referred us to a pediatric pulmonologist, Dr. James Phillips, who Jack will see on April 17. Dr. Phillips will evaluate Jack and determine what else, if anything, needs to be done to get rid of the wheeze.
Also, on April 23, Jack will visit Dr. Oren Miller, a pediatric urologist. Right before Jack left the hospital, a surgeon circumsized him, but he has grown so much since that it does not appear that he has been circumsized. Therefore, Dr. Miller will determine what needs to be done with this, and also evaluate a cyst that Jack has since developed since he left the hospital.
Its hard to believe its been 10 months since Jack was born. He's such a miracle. I find it hard to remember the time when he was in the hospital, like my mind has blocked it out because it was so painful. It seems like a lifetime ago.