Monday, December 18, 2006

Santa Baby!


Monday, November 13, 2006

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.

Friday, November 10, 2006

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.

Wednesday, October 11, 2006

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!

Tuesday, September 19, 2006

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.

Sunday, September 10, 2006

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...

Tuesday, August 29, 2006

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....

Thursday, August 03, 2006

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!

Monday, July 17, 2006

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.

Thursday, July 13, 2006

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?!?!?

Thursday, June 29, 2006

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.

Monday, May 29, 2006

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.

Saturday, April 29, 2006

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!

Wednesday, April 19, 2006

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.

Thursday, April 06, 2006

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.

Wednesday, March 29, 2006

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.

Jack's NICU Diary

Sunday, January 1, 2006
I know, its been a long time since I updated! So much has happened since October. We moved into a new house. Jack was weaned off the oxygen after only two weeks. He's been getting RSV shots once a month. He had an evaluation with the developmental preemie clinic and he is right on track with his motor skills for his adjusted age. He started at the child care center at the hospital and loves being spolied all day long by his teachers! His eye care was transferred to Dr. Denslow, who informed us that Jack is far-sighted. As long as you stand back a little, he'll give you the biggest smile! Weight around 10 pounds

Wednesday, October 5 2005
Today, Jackson had his first outing. He had two doctor's appointments, one with his pediatrician, Dr. Setter, and the other with his eye surgeon, Dr. Balyeat. Dr. Setter was very pleased with Jack's weight gain, and he says his lungs sound clear. He says Jackson doesn't have to be on preemie formula anymore, which is a blessing, because I can't find it anywhere! His plan of action is to have Jack off of oxygen in 4 weeks. Dr. Balyeat says that is incredibly pleased with progress he's made since surgery, and he said today that, with glasses, he thinks Jack will be able to attend public school! He will always have the risk of retinal detachment, and Dr. Balyeat said no contact sports for Jack, but that doesn't matter because the doctor said he'd be lousy at them anyway because he won't have peripheral vision. He suggested we get Jack some goggles when he gets older, so that when the other two play with him they won't be able to poke him in the eye. But other than that, we got two very good reports. He goes back to see Dr. Setter in two weeks and Dr. Balyeat in three weeks. Weight 6 pounds, 15 ounces

Friday, September 30, 2005
On Wednesday night, Jack was circumsized, and then I stayed overnight at the hospital with him. He was hooked up to his home oxygen and his home monitor, and he did just fine, so on Thursday morning, they let me bring him home! Its a little difficult, but its not impossible. He's on a very small amount of oxygen, so hopefully, once he grows a little more, he won't need the oxygen anymore. Luke is very excited to have his little brother home, but Beau is having a little bit of a hard time adjusting to this new family member. Today, Jack will be visited by his home health nurse, and then he will follow up with his pediatrician and his eye doctor in the future. Weight 6 pounds, 5 ounces

Wednesday, September 21, 2005
Well, if you haven't noticed, Jack's Homecoming Ticker is incorrect. He isn't home yet. Dr. Siddiqui really wants Jack to be off of oxygen before he discharges him. And, actually, I'm okay with that. I know that ultimately it would probably be better for Jack to be 100% ready to come home rather than try and bring him home when he's only 90% ready. I've waited 17 weeks to bring home...what's 2 more weeks? Dr. Siddiqui started Jack on a medicine called Prelone that is supposed to help him get off of the oxygen, and then they will wean him off of the medication. Yesterday Jack was on 40% Oxygen at .4 Liters...today he's on 30% Oxygen at .3 Liters, so we're definately making progress. Hopefully by the weekend he'll be off of the oxygen. The nurse said she was going to test him a little and turn his oxygen down to 25% and see how he handled that. Weight 5 pounds, 15 ounces

Sunday, September 18, 2005
Jack's surgery on Friday went very well. He went into surgery at 8:30, they intubated him in surgery, he went to recovery where they extubated him and he was back in the NICU by 10:30. Because of the surgery, he has a lot of extra fluid, so his chest xray from this morning shows some right upper lobe atelectasis (lung collapse), so they are going to give him some Lasix today to try and get some of that fluid off of his lungs. I spoke with Dr. Siddiqui last night, and he says that Jack will come home in a week or so. I can't get a straight answer!!! I'm trying to be patient. I know we need to wait until Jack is absolutely ready to come home. It just feels like these last few weeks are inching by. Planned for this next week is a sleep test, circumsision, and a room in. Weight 6 pounds, 1 ounces

Tuesday, September 6, 2005
Jackson is scheduled for hernia surgery on Friday, and then it will be about a week after that that he is scheduled to come home. Right now, he spends his days sleeping and eating from a bottle every 3 hours. Weight 5 pounds, 10 ounces

Saturday, September 3, 2005
15 weeks old! Jackson's met his weight goal, he's able to maintain his temperature, and he takes all of his bottles within 15 minutes. I'm in the process of learning his exercises, I've already made his follow up appointment with our pediatrician, Dr. Setter, and we are scheduled for a CPR class this week. We are in the homestretch! Weight 4 pounds, 12 ounces

Saturday, August 27, 2005
14 weeks old! Weight 4 pounds, 2.2 ounces Friday, August 26, 2005Today, Jackson was moved to a new room: Room 714, the last room in the NICU. This room is called the Feeder and Grower Room, because that's what Jackson is doing in the hospital now. They discontinued all of his medications today, so he is just in the NICU to eat and grow. He does still require oxygen, but they are working on getting that down as well. Weight 4 pounds, 1 ounce

Wednesday, August 24, 2005Today we had another conference with Jack's, physician, Dr. Siddiqui. He's very encouraging and says that Jack will be able to come home in about three weeks, and we were given a list of milestones Jack has to reach before he can come home.
1. Weight of at least 4 pounds, 10 ounces
2. Able to control own temperature in open crib. (DONE!)
3. Nippling all feeds within 15-20 minutes.
4. A Normal sleep study: This test will record heart rate, breathing patterns, oxygen saturation, and sometimes stomach pH levels over a 12 hour period, during sleep, feedings, and awake times. This test will help to determine if your baby will require a home apnea monitor or medications.
5. Parents and baby must participate in a room in, in which the parents are responsible for providing all the baby's care for this time.
6. Parents and other caregivers will have to take a CPR class.
7. Make an appointment with the physical therapist to learn the baby's home exercises.
8. Make an appointment for the baby with the family pediatrician for 5-7 days after discharge. Also, in his last week in the hospital, Jackson will have hernia surgery to correct his bilateral inguinal hernias, and he will be circumsized. Weight 4 pounds, 0.4 ounces

Sunday, August 21, 2005
Luke got to hold Jack for the first time today, and he was so proud of his little brother! The nurses all commented on what a big boy Luke is and how well behaved he acted in such a scary environment. Luke was very gentle and caressed Jack's head, which he really liked, and in fact, I'm pretty sure he smiled at Luke when Luke was making funny faces at him! Dr. Bilyeat re-evaluated Jack on Friday and said there was not any progression of the retinopathy in his eyes and that his pupils are nice and dark, which are all good signs. He will evaluate again in a week. More than likely, we won't know the extent of the damage for a long time, perhaps not even until he's old enough to look at an eye chart and identify letters or pictures. Jack got moved to an open crib today, and he's well on his way to coming home! Weight 4 POUNDS, 1.2 OUNCES!!!!

Tuesday, August 16, 2005
Jackson had a great day today! He extubated himself for the fifth time, and they left it out again, but instead of putting in the nasal CPAP, they put him straight on nasal canula and he LOVES it! He's a much more happy baby without a tube shoved down his throat or big prongs shoved up his nose. Big Brother Luke colored Jack a picture and its hanging on the top of his incubator, so Jack can look at it whenever he is awake. I get to hold him everday when I go to see him now, and he loves to cuddle. The only other thing he loves more is his pacifier! The nurses call it his "green monster". He's definitely got the suck reflex down. Weight 3 pounds, 14 ounces

Sunday, August 14, 2005
Dr. Bilyeat, the eye surgeon, evaluated Jack's eyes again today. Its too early to tell whether or not the surgery corrected the retinopathy, but he did say that Jack's eyes are healing nicely, and that the pupil is dark, which is what we want. He's still intubated from his surgery, but he's on very low oxygen and he's had very few drops in his o2 saturation. He's eating very well, still on 1/2 breastmilk and 1/2 formula, which he gets 12mL an hour. And he's pooping and peeing just fine (I know first hand because I got to change a VERY poopy diaper this afternoon.) He loves being in his incubator, because its quiet and dark, but they turned off the heating element, and he's maintaining his body temperature very well, which is a great sign!!! Weight 3 pounds, 12 ounces

Monday, August 8, 2005
Jack had laser eye surgery today. The doctor said it went very well. The laser was shot 2200 times into Jack's right eye, and 2800 times into his left. He was intubated before surgery, they discontinued his feedings, and then an anesthesiologist put him under. He was out well into the night. He will stay intubated until they can wean him off of the oxygen again, and they will restart his feedings in the morning. The eye surgeon will re-exam his eyes on Sunday when the puffiness has gone down. I made Jack an incubator cover, and he loves it! The cover makes it very dark in his incubator, so he's able to open his eyes very wide and look around. It also muffles the noise, so he's able to rest without being startled. Weight 3 pounds, 13 ounces

Friday, August 5, 2005
Today was not a good day. Jack was having a hard time keeping his o2 saturation up, so they had to re-intubate him. And I spoke with Dr. Bilyeat for the first time. He is Jackson's eye doctor, and he didn't have a very good report for us. Jackson has stage III retinopathy in zone 1 of his eyes. They plan to do surgery on Monday to see if they can stop the retinopathy before it gets into stage IV or V. Below are some links to websites about retinopathy. Weight 3 pounds, 15.1 ounces

Thursday, August 4, 2005
Jack got moved into an incubator today. He absolutely loves it. He just lays there, soaking up all of the warmth. And he has started wearing clothes, which he also finds very comforting. Weight 3 pounds, 14 ounces

Sunday, July 31, 2005
Jack's now been in the NICU for 9 weeks. This past week has been fairly uneventful. He's just been sleeping and enjoying the freedom of no breathing tube down his throat. We both finally got to hold him, and I got to kangaroo with him, which was so wonderful. He just layed on my chest and sometimes he'd look up at me and stare...it was so cute! Now our next step is to get him off of the Nasal CPAP (which he likes to take out all of the time) and on nasal canula. Then he can maybe start feeding from a bottle (right now he has an orogastric tube). Plus, once he's off the oxygen we can test his hearing, because one of the fears is that he may be deaf. Not that he's showing signs of hearing problems, its just a general fear as something that could possibly go wrong. Statistics show that only 3% are deaf. He still hasn't had any brain bleeds, so we pray that that stays the same. Dr. Siddiqui told us at our last conference on Thursday that if he doesn't have any brain bleeds, the chances of him having certain disabilities are low. Weight 3 pounds, 10.9 ounces

Monday, July 25, 2005
Today was a very emotional day. When I called right when the NICU opened at 8 am this morning, the nurse, Janet, said she was just getting ready to do his morning assessment, so she didn't really have anything new to report. At 11 when I went to visit him, she was able to give me full report. His morning arterial blood gas results showed a high level of carbon dioxide in his blood. They did a chest x-ray and found that the right upper lobe of his lung had collapsed. They had him laying on his left side to allow the right side to expand, so for what seemed like the thousandth time, we were playing the waiting game. But this time, we wouldn't have to wait for long. At 1:30, Clint and I went to visit him together and found him laying on his back. At 12:00, they had repeated his chest x-ray and found the collapsed portion to be expanded again. Then I noticed his diaper had exploded, and I got to hold him up while the nurses changed his bed. Finally, some good news. But the day didn't end there. Later, around 7:00 while at home, Janet called and said that Jack had extubated himself. And then she told us that the Dr had decided not to reintubate him, so now he is breathing on his own! Finally, some GREAT news! Now we will both get to hold him. Weight 3 pounds, 7 ounces

Saturday, July 23, 2005
8 weeks old! This morning we got a phone call from Katie, Jack's nurse, requesting verbal permission to put in a central line. She said he's still getting quite a bit of medication and lab drawn and that it would just be easier for him to have a central line. When I went to visit him after the procedure he was very sedated, so much so that they had to turn his oxygen up to 100%. And he had these tiny little sutures in his shoulder where they had inserted the line, which just absolutely broke my heart. Hopefully, though, this will allow them to get him all of the medication he needs so that he can get rid of these infections and just remain in the hospital to grow! Today they moved his feedings up to 9 mL an hour. Weight 3 pounds, 5 ounces

Thursday, July 21, 2005
Jack spent most of the day on his back, which usually he doesn't like, but today he did okay. His O2 saturation is not going down as much, and they've managed to work his oxygen level down to around 50%, down from 75% yesterday. They aren't getting as much sputum out of his ET tube when they suction him now, so they think his infection is getting better. The new goal for extubation is this weekend. If he continues to depend on less and less oxygen and is able to breath more on his own, the doctors will feel better about extubating him. Weight 3 pounds, 1.9 ounces

Wednesday, July 20, 2005
It's official!!! Jacks at 3 pounds. He lost a little weight overnight because of the Lasix, but he is still over 3 pounds. On Monday they will do a repeat culture and we'll know sometime next week how the new antibiotics are working for him. Meanwhile, his nurses are working on getting his oxygen down. Weight 3 pounds, 0.8 ounces

Tuesday, July 19, 2005
Jackson got blood yesterday, so today he was a little bloated, which explains why he gained so much weight over night. Weight 3 pounds, 1.2 ounces

Monday, July 18, 2005
Jackson's oxygen is down to 56%. His nurse, Janet, is working with him so he doesn't become dependent on a lot of oxygen. She sneaks it down as much as she can. Janet was Jack's nurse all weekend, so we really got to know each other and she was very helpful explaining a lot of Jack's care. She can't believe how well he's doing. He did not have to have PDA surgery, which is a procedure done on the heart whenever a valve doesn't close correctly. So far, he hasn't had any brain bleeds, which is a miracle. Now if we could just get rid of these bacteria that are growing in his lungs we'd be set! Jack met with Dr. Sharma today, who is one of the hospital epidemiologists (infectious disease doctor). He looked over Jack's sputum culture results and his chest x-rays and he thinks that Jack is on the road to recovery. He changed one of Jack's antibiotics and left the rest alone. Next Monday is when they will do another sputum culture, and it usually takes about 24-48 hours for a preliminary result, so by next Wednesday we should know more. Weight 2 pounds, 13 ounces

Saturday, July 16, 20057 weeks old! Weight 2 pounds, 11 ounces

Friday, July 15, 2005
Not much has changed with Jack since Sunday. He's still on quite a bit of oxygen, around 80-90% most of the time. He has four different kinds of bacteria growing in his lungs, so he's on quite a few antibiotics. They did discontinue some of his medication this week...Reglan, which keeps him from spitting up, but he's never really had a problem with that, and they discontinued his morphine, which I assume was supposed to sedate him, because he's very active now. He lays on his stomach with his head to the left because that's the direction his breathing tube is coming from. He's always trying to turn his head over. And he gets up on his knees so much you'd think he was trying to crawl right out of his bed. The nurses say he's just being feisty. Weight 2 pounds, 9 ounces

Sunday, July 10, 2005
Today was quite a heartbreak. We didn't get to hold Jack. We were so ready to get to just spend the day, passing him back and forth, but it didn't work out that way. He had a difficult night, so they had to turn his oxygen up to 80% (up from 40%) and this morning when they checked his blood gases, it didn't look too good, so they did a chest x-ray which the nurse said looked a little hazy, which means he is retaining water. He gained almost 2 ounces over night, and Katie, his nurse, said that much of a weight gain isn't good for a baby as small as he is. They gave him another two doses of Lasix and they are slowly working his oxygen back down to where he was. He did have a good visit with the pediatric eye surgeon today, who says Jack has premature vessels in his eyes, but he's a premature baby, so that is obvious. There are three stages of retinopathy (detachment of the retina) and so far Jack isn't at any of the stages, which is great! He will check him again once or twice more, and if everything looks okay then Jack won't require eye surgery! Weight 2 pounds, 11 ounces

Saturday, July 9, 2005
6 weeks old! He's doing great! He was moved out of his little box today and is just laying in his Snugli, with a little stuffed puppy dog that smells like daddy to keep him company. Luke gets to visit with Jack in his room for the first time tomorrow. He's so excited! And the nurse told me today that she didn't want to get my hopes up, but Jack is big enough and old enough for me to hold now. She's going to check with Dr. Siddiqui to get an order for Kangaroo Care, which is this special form of therapy that requires the mommy or daddy to hold the baby skin-to-skin for an hour. Research has show that babies have demonstrated increased stability in their heart rates, breathing, blood pressure, and oxygen saturation while being held in kangaroo care. Weight 2 pounds, 9 ounces Friday, July 8, 2005Weight 2 pounds, 7.3 ounces

Wednesday, July 6, 2005
Weight 2 pounds, 5 ounces

Monday, July 4, 2005
Jack's first holiday, just like Luke's. Jack graduated to a room with less severe cases today! He's doing very well, but he is a little puffy from all the food he's been eating so they had to start him on two doses of Lasix. Luke got to peek through the window at Jack. Its the closest they've been. Now that Jack's out of room 719, Luke will get to visit him during Sibling Visitation on Sundays. Weight 2 pounds, 3 ounces.

Saturday, July 2, 2005
5 weeks old! Weight 2 pound, 3 ounces.

Friday, July 1, 2005
FINALLY! Jack's at 2 pounds! As soon as we're sure he won't dip back under 1000 grams, he will be able to come out of his little plastic box he sleeps in and just lay in his bassinet. At 1500 grams, he won't have to be covered in suran wrap anymore. YAY!

Thursday, June 30, 2005
Today we had our second conference with Dr. Siddiqui and the rest of Jackson's care team. His physical therapist said his muscle tone is that of a 30 weeker, which is great news! Now for the not so great news. Jackson has a lung infection. The doctor is treating it with an antibiotic called Gentamycin. As long as he's got this infection, he won't be extubated, but as long as he's intubated, he's constantly at risk for more infections. Weight 1 pound, 13 ounces.

Tuesday, June 28, 2005
One month old! Weight 1 pound, 14 ounces.

Saturday, June 18, 2005
Three weeks old! Weight 1 pound, 9 ounces.

Saturday, June 11, 2005
Two weeks old! Weight 1 pound, 4 ounces.

Friday, June 10, 2005
Our first set back...Jack had a stool test positive for blood. They had to discontinue his feedings until further notice. Weight 1 pound, 4 ounces.

Monday, June 6, 2005
Feedings moved up to 1mL every hour. Weight 1 pound, 4 ounces.Saturday, June 4, 2005One week old! Weight 1 pound, 5 ounces.

Thursday, June 2, 2005
The doctors discontinued Jack's bililights today. His color looks great! Weight 1 pound, 0.9 ounces.

Wednesday, June 1, 2005
Today, Jackson was moved off of the oscillating vent to a conventional vent. His feedings were moved up to 1mL every 3 hours

Tuesday, May 31, 2005
Jackson got his first meal today. They fed him breast milk through an NG tube in his nose. He tolerated it well.

Monday, May 30, 2005
Today I had to do one of the hardest things in my life...I had to leave the hospital without my baby. I'm completely run over with odd emotions, like that fact that I'm not pregnant anymore. The doctor said I would be more hormonal this time, since my body is not quite sure of what is going on. Jackson is doing very well. He opened his left eye today. We're still just waiting for changes.

Sunday, May 29, 2005
At 2:00am, I visited Jackson in the NICU for the first time. The nurse said he was doing very well, but we were reminded that the first 48 hours out of the womb were a "honeymoon period", meaning Jackson was unaware that his location had changed. We visited him for a few more minutes and then went to the ER to show everyone pictures of our new baby, and then we went searching for a Saturday newspaper, for Jackson's scrapbook. We found one finally and went back to my room to get some sleep. Around 9:00am, I woke up and went to visit Jackson by myself. His nurse said that he had had a rough night. He wasn't responding well to the medication they had given him to help develop his lungs, which they had to administer through his ET tube. The medication wasn't absorbed as quickly as the staff would have liked, so it was getting clogged in his tube and making his O2 saturation level drop. They decided not to give the fourth dose, because it seemed to be doing more harm than good. The nurse also told us that his blood sugar level was high, so they were having to administer insuling every 3 hours. The nurse, and Dr. Miranda, both reminded me that this was just the beginning of our roller coaster ride, and just to remember that there were going to be a lot of ups and downs. I visited Jackson for a few more moments and then went back to my room, where Clint was just waking up. We all sat in my room and watched Jackson on the monitor for a few hours. We are anxious to meet Dr. Siddiqui to see what the future will bring.

Saturday, May 28, 2005
Today started out like all the rest. I woke up at around 9:00am and met with Dr. Frame, who was on call for my OB over the weekend. Nothing had changed, so he stayed only for a few minutes. Around 30 minutes later, I got up and went to the bathroom, but something was different this time. I felt something poking me in my pelvic area. Completely frightened, I called the nurse immedately, and tried to lie as still as possible until Dr. Stewart could get to my room a few minutes later. He brought in his ultrasound machine, scanned my abdomen, and said, "Well, here is your cervix. This is a leg bone." At that moment, my room filled with nurses, who quickly transported me back to labor and delivery. Both of his legs were out, and by the time we got to labor and delivery, he was out to his chest. The anesthesiologist came in and, after two tries, was able to insert the epidural. This began almost 8 hours of the strangest feeling I have ever felt. With my other pregnancies, I hadn't had an epidural, but this time, we were unsure if we would have to go to surgery for an emergency c-section, or whether we'd be able to go ahead and delivery the baby vaginally. Dr Stewart checked me again, and informed us that the baby was in the perfect position to be delivered vaginally. The nurses hooked me up to Pitocin, and we waited for contractions to start. After turning up the dose a few times, Jackson was ready to be delivered. Clint and my sister in law, Kelly, were present in the delivery room, along with quite a few nurses from Labor and Delivery and the Neonatal Intensive Care Unit, and two physicians, Dr. Stewart and Dr. Miranda, the neo-natologist. In a few pushes, Jackson was out at 1:06pm, and the NICU team went to work on him, intubating him and getting him ready to make a new home of his bassinet in NICU for the next few months. But first, for a few brief moments, I was able to hold him, long enough for Clint to take our picture together. He was then whisked away, followed by Clint, and I was left in the delivery room with Kelly and the nurses, where for the next several hours, I was in and out of sleep due to the heavy narcotics I had been given. I woke up late in the evening and stayed up well into Sunday...

Friday, May 27, 2005
No changes come for today. I again spent the entire day in bed and just waited to see what happened next.

Thursday, May 26, 2005
Last night, they gave me a sleeping pill to help me relax and get a good night's sleep. Well, it worked. I woke up around 3:00pm today. Clint has been trying to keep up with work and stay with me as well, and the boys have going to school, visiting me, and then heading home to sleep with Clint's mom to over them. Its still been a pretty uneventful stay. At 4:00am, we met the 48 hours mark. Our next goal is next Tuesday. Hopefully, we can hold out that long.

Wednesday, May 25, 2005
Today, I spent the entire time in bed. We watched the American Idol finale, and waited for Dr. Stewart to show up. I finally got to take a shower around 9:00pm, and Dr. Stewart came in around midnight. He stayed for about an hour doing an ultrasound, which showed the baby sitting like a catcher, with his umbilical cord swung over his shoulder. Even though this sounds funny, it is the best position for the baby to be in, because it keeps him from sitting on his cord. Since he is breach, when I go into labor, the doctor will more than likely deliver him by c-section. This concept is completely frightening me, because I've never had anything even remotely like surgery before, but unless there is an emergency, Clint will be there with me all the way.

Tuesday, May 24, 2005
At 4:00am, I got out of bed to go to the restroom, and when I laid back down, I rolled over to get more comfortable. At that moment, my water broke. Not a trickle, or a drip, a full-fledged gush. Immediately, a feeling of utter fear rushed over my body. I woke Clint up, we grabbed the kids, and came to the hospital. My OB was not on call, but another OB, Dr. Frame, came in to check on me and I was admitted to the hospital for observation. I was moved to Labor and Delivery room 4, which I will apparently call home an undetermined amount of time. At 9:00am, my OB, Dr. Cunningham, came in to visit with me and discuss the options. He ordered an ultrasound to check on the status of the baby, and told me that he never gives up. He ordered a consult with a paranatologist, named Dr. Stewart, who would be in shortly to speak with me. Around 8:00pm, he came in to discuss what lay ahead. Clint, along with his brother, Steven, and his wife, Kelly, were present to hear the news. Dr. Stewart was very optimistic. He said I will stay in the hospital for at the most 2 weeks. The possibility of the baby waiting inside much longer than that is very slim. He said I could deliver within the next 48 hours, which gives the baby a 30% chance of survival. If we can hold out for a week, the chance goes up to 50%, and with two weeks comes a survival rate of 70%. Not that survival comes without risks. The baby has a chance of being born without the ability to eat, or breathe, and also the possibility of the baby's brain bleeding. Both doctors informed me that I will lay in bed, with only the priviledge of getting up to go to the restroom and possibly take a shower.