Friday, December 05, 2003

Wow – time is just flying by!! We hope everyone had a wonderful Thanksgiving…I know we sure did! Jack is doing very well these days. He started eating solids…what a sight! He HATES carrots, loves sweet potatoes, and doesn’t mind squash or peas. Soon we’ll move on to the good stuff! Yummy fruit!

Jack had a check up at Hershey with his neonatologist. He was his doctor during the roughest part of Jack’s NICU stay -- A time when we honestly did not know if Jack would pull through. Needless to say he was extremely impressed at how well Jack is doing now! Jack was hamming it up too – laughing and smiling and pulling on the doctor’s stethoscope. It was too cute! He will see him again in 6 months. The doctor discontinued Jack’s apnea monitor! They came to pick it up yesterday. Last night was our very first night without the monitor. Of course Jack did a-ok but we didn’t sleep very well!

Jack is now over 16 and a half pounds and 27 inches long. He’s a mighty big boy! Growing and growing and growing! It’s amazing to look back at his first tiny little diaper or his tiny preemie clothing. Hard to believe he was EVER that small.

Monday, November 17, 2003

Hi everyone!

We can’t believe how much Jack is growing and changing! He’s doing very well all around. He’s somewhere around 16 pounds and 27 inches now – we’ll know for sure when we go to the pediatrician for a check up and another RSV shot this Thursday. We know he’s getting bigger because his clothing keeps getting smaller and smaller! Can you believe he’s wearing size 12 months now?!?!?

He’s definitely teething…the poor guy is drooling and biting on anything and everything he can get his hands and mouth on. He’s even waking more at night and not eating too well the last few days. We hope those little teeth come in soon so he can get a break!

His physical therapy is going well. He can sit for almost 30 seconds all on his own! He also just started holding himself up on straight arms and knees. He knows he wants to get somewhere so he launches himself forward and crash lands on his little nose…then laughs and does it again!

He’s ‘talking’ much more as well. He says ooohDA….ohhhBA and lots of mmms and ooohs and ahhhs. He’ll look at you and concentrate really hard and just start telling you whatever is on his mind. He’s such a happy baby, very pleasant and a fan of the ladies as well!

Jack started occupational therapy last week. She said Jack is doing a great job eating and she doesn’t see any problems with is ability to take the bottle or eat from a spoon. She’ll continue to work with him twice a month as we introduce new foods and textures. She’ll also observe and track the development of his fine motor skills – like picking up, holding and manipulating toys and other objects.

We’re getting excited for the holiday season - can’t believe it’s already that time again! This will be a fun time full of a lot of firsts for Jack. We think he’ll just love looking at the Christmas tree and all of the lights and shiny ornaments! Oh, and all the presents too!

Thanks to all of you who keep reading this website! We hope everyone is doing well. Can’t wait until spring so Jack can come visit you!

Friday, October 31, 2003

HAPPY HALLOWEEN!!

Jack is doing very well. He is now 15 pounds! We can hardly believe how BIG he is now! He’s almost 8 months old. He’s continuing to eat very well and loves his oat cereal!! We think he may be teething as well – lots of drooling and chewing on his hands and fingers.

Jack had his first of seven RSV shots – it went well except his legs were very sore for a few days! We remain indoors now avoiding shopping centers, grocery stores and crowds. We did however get out of the house a little bit yesterday! Jack went to visit his great grandma Olga and his great grandpa Chuss. Everyone had a wonderful time. Jack was laughing and smiling at them!

The next few weeks are pretty much appointment free with the exception of his physical and occupational therapy. December is a busy month for Jack. He’ll see his neurosurgeon, his neonatologist and his pediatrician. Jack is also scheduled for a baseline CT scan. We are not sure what the procedure involves – we’ll get more information when we get the letter in the mail. We do know they want to do them every so often to make sure his shunt is continuing to work well.

Thanks to everyone for your donations towards the Rocking Chair for Jack’s NICU!! We will probably have the chair ready to be delivered to the NICU by Jack’s first birthday in March. We will keep you updated!

Wednesday, October 15, 2003

Good morning! Hope it’s not too windy out there for everyone!

Jack is really doing well! He’s changing and growing so much – he’s becoming such a big boy!!

Jack was discharged from his eye doctor!!! No more terrible eye exams (for those of you who aren’t familiar with the eye exams they do on preemies it’s a horrible exam for those little ones to go through – we’ll spare you the details). The eye doctor says his preemie condition called ROP is all cleared up! Jack still has optic nerve damage, but that has been stable ever since they first discovered it. Jack’s eye doctor was optimistic about Jack’s prognosis. The doctor is pleased that Jack is right on track visually for his age - tracking objects, following people from across the room, etc. Jack will have a regular eye exam in 6 months to tell if he’s near or far sighted. Chances are since both of his parents wear glasses, Jack will need them some day as well.

Jack is eating very well and continues to enjoy his cereal…he tried to have a drink of water with a sippy cup but it was too difficult for him – we’ll have to find a different cup that makes it a bit easier! He’s taking 5-6 ounces of formula now! Such a big guy!

We had a quarterly review with early intervention last week. His physical therapist said she’s very impressed with how far Jack has come since he first started therapy. She says he’s doing things at about a 5-6 month age level – which is advanced for him because he’s only expected to do things on a 4 month age level right now. As time goes by Jack will close the gap between his real age and his adjusted age. Doctors say this usually happens by the time they are 2 to 3 years old. Jack was approved to start occupational therapy twice a month in home (just like his physical therapy). We are happy because this will help Jack learn so many new things.

Monday, September 22, 2003

Hello everyone! It’s been a while since our last Journal entry! Jack is up to 13lbs, 3oz! And he’s almost 25 inches long – his doctor continues to be impressed with his growth and development as we are of course!

He now gets baby cereal 2 to 3 times a day. This is such a fun thing for all of us – at first Jack did not seem to understand what in the world we were doing…but as each day passes he gets better and better at eating from a spoon! He’s also figured out how to scoop some out of his mouth and plaster it all over his hair, his clothing, his mom, his dad and anything else in close proximity – so he’s spending more time in the bathtub too! Next month Jack can start to practice drinking from a “sippy cup.” His doctor says it’s best to introduce this early so when it comes time for him to give up his bottle it won’t be such a difficult transition.

He saw his eye doctor this month and he only wants to see him back in a month – his ROP is slowly resolving and his optic nerve atrophy remains stable. Jack is starting to follow people from a distance now and he loves to watch the ceiling fan! He loves when you make silly faces and funny noises – he just laughs and laughs! He’s a very happy baby!

He’s continuing to sleep through the night in his own bed (bassinet). Soon he’ll be over the weight limit of his bassinet and we’ll make the transition to his crib upstairs – possibly this coming weekend.

His physical therapy is continuing to go very well. He spends a lot of time on his tummy, building up those muscles! We are hoping to start occupational therapy with him as well – instead of going to Hershey for the feeding clinic (which as proven to be a bit hectic). Occupational therapy would also help him develop his fine motor skills (like picking up objects, eating, etc.). This would be just like his physical therapy – once a week in our own home, one on one in a familiar setting.

Jack gets his very first pictures taken tomorrow at Sears…hoping he’s up for a photo shoot! Speaking of photos, we’ve added new ones!!!! Click HERE to see them!

Jack has an appointment with his neurosurgeon on Friday for a check up. We’ll let you know how it goes! Next month Jack starts his RSV shots. To read more about RSV and what it means for Jack as a preemie click HERE.

Friday, September 05, 2003

Jack’s a whole 6 months old today!

HAPPY 6 MONTH BIRTHDAY JACK RILEY!

He had his hip ultrasound on Wednesday at Hershey and the doctor said everything is 100% NORMAL! We were so relieved to hear that wonderful news! Jack is doing well and growing SO much! We hope everyone has a wonderful weekend!

Tuesday, August 26, 2003

Jack’s been really surprising us lately! He’s been sleeping in his bed all night long for about a week! The time of his night feedings are usually around 11:00pm then again at 5:00am. This schedule is working out pretty good because if we try to put him to bed before 11pm he is too wide awake and just smiles at you then eventually cries because he’s not tired – but right after he gets his bottle he drifts off into a deeper sleep! He still eats every three hours during the day and his pediatrician is happy with his gaining so she said it was a-ok to let him go a little longer at night. Which works out because when we used to wake him up in the middle of the night he would never eat much anyway. We are all still sleeping downstairs – but we no longer have to hold him all night long!!!!! We made a goal of getting us all upstairs in our real beds as soon as the weather gets cooler (too hot upstairs anyway right now).

Once Jack’s pediatrician saw his hip X-RAY from the hospital she said she needed to get a clearer picture so she is sending us to Hershey to get an ultrasound done. In younger babies an ultrasound shows a better picture of the bones. We are praying everything is okay. The ultrasound is scheduled for September 3rd. Jack has a busy September with lots of appointments! We’ll keep you updated on how they go.

Oh, and PS – today is Jack’s mom’s birthday!

Friday, August 22, 2003

Jack saw his pediatrician yesterday. He gained 2 pounds and 3 inches in one month!!! He’s up to 11lbs 12oz and 23 inches long. She was very pleased with his development – she nearly fell over when she learned he was rolling over! She even thinks he may be able to start some solid food next month. She was examining Jack and she felt his left hip may be dislocated – so she sent us over to the Good Sam Hospital for an X-Ray. This showed that his hip is not dislocated – there’s just a slight rotation. We were told this isn’t an issue right now and there’s nothing we need to do for it. So we were thankful that it was not dislocated.

We will see her again next month for more shots (oh no!) and another check up.

Monday, August 18, 2003

Good morning!

Jack’s physical therapist was here on Friday – she was very happy with Jack’s progress in one week’s time. She said last Friday she had him right at 2 months old with his skills – this Friday she had him at 3 months old! She said the closer his developmental age and actual age are the better! So he’s really doing well!

Friday, August 15, 2003

It’s almost the weekend again! YAY! Jack likes weekends (okay, so really it’s mom that likes weekends the best – she gets a much needed break!)

Jack did something amazing this week! He rolled over from his belly to his back! We could hardly believe our eyes and our luck (we were both present to witness this milestone). He hasn’t done it again yet – but he gets close. Hopefully he’ll show off his new talent when his physical therapist is here today!

He saw his eye doctor this week – and he only wants to see him back in a month! This is good news! Jack’s ROP is clearing up and his optic nerve atrophy remains stable.

Next week is our trip to the pediatrician. Then we’ll finally get a new weight on the (not so little anymore) guy! He’s continuing to eat well – which is just so great!

Have a great weekend everyone!

Sunday, August 10, 2003

Wow, Jack is really keeping us busy! He stays awake most of the day now with a cat-nap or two here and there. He spends an hour or so in his swing various times during the day too.

We switched Jack from his Preemie Slow Flow nipple to a regular one this week and noticed a dramatic increase in the amount of food he is taking. We are so thankful because we noticed he wasn’t really eating too well the last few weeks – here he was just frustrated and tiring himself out trying to eat from the slower nipple.

We keep him off of his monitor a lot now. Only when he’s not in our direct sight do we put it back on him. We’ll be happy when he no longer needs it!

Jack is such a little ham – very social and flirty with the women! He loves “talking” to you and laughs a goofy little laugh when he’s delighted. He’s getting to be such a big boy! His physical therapist is happy with his progress. He’s right on track developmentally for his adjusted age of (almost) two months old. It’s hard to believe he’s almost 6 months old!!!

Thursday, July 31, 2003

Hello everyone!

Jack saw his eye doctor yesterday for yet another exam. He said his ROP is looking better and his Optic Nerve Atrophy has not changed. He would like to see us back in three weeks to be sure his ROP is still resolving. While we were at the appointment yesterday we saw so many NICU babies! You can always tell a NICU baby by the tiny grunts, monitor and/or oxygen wires coming from their little carriers. It was like a reunion. Although we only knew one of the babies personally it was the first time we were around so many NICU graduates.

Jack had two firsts this week! He went on his first social visit to his Great-Umpa’s house to wish him a happy birthday last weekend. We sat outside in a screened in patio and Jack did great! He was looking around and seemed to love the fresh air. Then earlier this week Grandma Josie and Mommy took Jack to K-Mart to buy some summer clothing for Jack for next year. It was nice because the store was virtually empty so we were able to take our time and walk Jack around a little bit. These were Jack’s first outings other than to the doctor. We still must avoid crowds but while the weather is still nice hopefully we will have a few more of these social outings.

From this coming October through April we will have to be meticulous about avoiding certain things because in Pennsylvania it is RSV season. To read more about RSV click HERE. Jack will get a series of 7 monthly shots to help protect him from RSV. It is very serious and could possibly put Jack back in the hospital and/or leave him with life long breathing complications which is something we desperately want to avoid. We won’t be having too many visitors or going out much which may make for a long winter but it is in Jack’s best interest!

Jack’s physical therapist from Early Intervention has visited us twice now. She’s a nice lady and is very informative. She’s given us a few things to work on. She made this little seat for Jack to sit on out of a few blankets and masking tape. He sits on it and is able to bring his hands together to grasp toys much easier than if he was lying flat on his back. She’s been teaching us infant massage as well – Jack really likes this! She also showed us a way to hold Jack so that he can practice his head control. All of these things will help Jack reach his developmental milestones.

We haven’t been back to the pediatrician since the last journal update…so we don’t have a current weight for Jack, but with his gaining history he should be well over 10 lbs by now! We see his pediatrician at the end of August.

Thursday, July 24, 2003

Jack is doing well…he’s awake much more during the day now, which is so neat! As some of you know, we have been waiting since April to have carpet installed in our living room…it kept getting back ordered! It’s finally here and installed! It’s wonderful – we love it very much. Jack likes to lie on his blanket and kick his legs and smile. It seems like he’s having a ball.

He’s almost cooing now. He tries hard to make little sounds with his voice. Any day now he’ll be “talking” up a storm! He finds things amusing too…he smiles and waves his arms when we show him Elmo, or another brightly colored toy. He also will get really still and listen for your voice when you start talking. He’s a social little guy – he loves to be talked to.

He is also appointment free for a while! Whew!…we are so glad. We do see his eye doctor again in a week, and hopefully it will go better than last time! We waited over 2 hours in the waiting room and felt so bad for Jack because he was getting soooo hungry! Guess eye doctors get swamped too.

Friday, July 18, 2003

Jack is glad this busy week is almost over – and we are too! His meeting with the feeding team went well. They think Jack’s suck/swallow/breathe reflex is right on track. They advised us to continue with the same feeding plan we’ve been using, slightly increasing his amount each week.

Jack’s pediatrician was very impressed with Jack’s growth and development. He’s up to 9lbs, 12 oz! He’s gained OVER an ounce a day since his last visit. She said she doesn’t want to make any predictions about Jack’s future, but at this point she couldn’t be any more pleased! And that is a totally acceptable answer. He had to get three vaccination shots…he did NOT like those! But they gave him some pretty cool Band-Aids and he was happy with that!

We see the eye doctor today, and then we are finished with appointments for a while! It will be nice to have a break from all those doctors. Though we did ask his pediatrician if we can come back in a month (rather than two months) for a weight/growth check and she happily agreed.

Stay tuned for some new pictures! If Jack takes his morning nap, they might have a chance to be added today!

Tuesday, July 15, 2003

Jack has a busy week – he meets with the feeding team at Hershey today to evaluate his suck/swallow/breathe functions. We’re sure he’s doing just fine, but they always follow up with the babies who go home with feeding tubes. Jack is eating very well and we’re wondering when he should start to eat cereal. We’ll probably discuss this today. Jack also sees his eye doctor and pediatrician this week too.

Both of Jack’s NICU buddies are doing well and are at home with their mommies and daddies. Thanks to everyone who kept them in their thoughts and prayers during their readmission to the hospital. We can’t wait until they are old enough to play together!

Jack is getting used to not being on his monitor (and so are we!!) and he doesn’t seem to like it when we put it back on him when it’s time for bed. Soon enough we won’t need it at all – but for right now it does give us peace of mind and I am sure we won’t want to give it back! We joke and say we’ll probably chase after him with it when he’s a teenager and going to get his driver’s license! Just kidding!

Wednesday, July 09, 2003

Well, guess what! Jack is off of his oxygen!!! We met with his neonatologist this morning and he said Jack was probably ready weeks ago! Jack also only has to be on his apnea monitor when he’s in his bed sleeping. If we are holding him, feeding him or interacting with him at all we don’t have to monitor him anymore. The freedom is amazing! Since Jack was born we’ve never been able to just hold Jack and walk with him without minding some type of wire or tube…it’s so great!

Jack is doing very well without his oxygen. His color stayed nice and pink all day today. We are very pleased! His neonatologist says Jack looks really well – developmentally. He noted a lot of the same things that the crew from Early Intervention noticed. He even confirmed he is certain Jack has vision. Even though we really knew this, it was great to hear. After his rough start and hearing such difficult news time and time again, it’s great when we get such good reports. Jack still has a lot to overcome and will always have his shunt to be concerned with – but he’s off to a GREAT start!!

Tuesday, July 08, 2003

Jack’s meeting with Early Intervention went very well yesterday! They played with Jack on the floor and asked a lot of questions to see where he stands developmentally. They consider preemies’ development from their adjusted age. Even though Jack is four months old actual age, he’s three weeks old adjusted age. They scored him at two months old developmentally! He’s advanced for his adjusted age! They were very pleased with his movement and muscle tone and were happy to see he’s raising his head and interacting socially. They will come once a week to work on new milestones like grasping and mouthing toys, different positions, eventually sitting, etc. They are also going to teach us infant massage to help keep his muscle tone where it should be and help with constipation.

All in all Jack is excelling in growth and development – this is so great to hear from doctors and therapists because as parents we tend to be a bit biased in our opinions!

Sunday, July 06, 2003

We hope everyone had a nice 4th of July! We spent the day indoors with Jack just relaxing and watching tv. It was nice to get some quality family time!

Jack saw his pediatrician last week. He’s up to 8lbs, 13oz! She was extremely pleased with how well he’s doing. He gained just under an ounce a day…she’d like to see him back up to just over an ounce a day so we increased his feeds again. He takes almost 4 oz now, every three to four hours.

Last week Grandma Josie and mommy took Jack for his first walk outside. The weather was beautiful and Jack really seemed to love the outdoors. We plan on making it a part of our routine now.

Jack is becoming more social and loves to look at faces! He makes eye contact and searches for your face until his eyes lock on yours. He is “talking” now by making a variety of different sounds! He gets mad when you take his bottle away to burp him and lets us know he wants it back.

Jack is sleeping more and more in his bassinet. He sleeps after his feeds all morning and even at night last night. He’s becoming much more independent – he even loves to spend time in his swing now!

This week Early Intervention is coming to evaluate Jack. We’ll let you know what they have to say. Also, Jack sees his neonatologist at Hershey this week. We’ll be discussing his oxygen and if it’s time to wean him off.

Have a nice Sunday!

Sunday, June 29, 2003

Jack’s trip to the neurologist went well. His ventricles look really good on the ultrasound -- a lot better than the last (in the exact words of the neuro). He said the shunt is definitely doing its job. He did note a tiny swollen spot behind Jack's ear (along the shunt tubing) but just told us to keep an eye on it and call if it seems to get bigger -- or "sausage-like" as he said. He only wants to see him again in September. So we’ll continue our daily inspection of Jack’s shunt site.

Jack's oxygen company is willing to bring us a great big tank for our first floor! This means we'll no longer only have 7 feet to move Jack around -- we'll have 50! We are VERY happy about this! Now he’ll get to see more than the living room! They are coming on Monday to deliver it.

This week Jack sees his pediatrician on Thursday. We are looking forward to another weigh-in! He was 8lbs, 1oz on June 18th, so we’re excited to get the newest numbers!

We learned that Jack’s other friend (the same one we saw at the eye doc) is now back in the hospital with a possible infection. They took him in through the ER last night. We would like to ask you to keep him in your thoughts and prayers. We keep in contact with his family by e-mail mostly and we’ll keep you posted on how he’s doing. Jack’s other friend is still recovering (at home) from his stay.

Thursday, June 26, 2003

Jack went on a trip to see his eye doctor yesterday. We even saw one of Jack’s very best little friends there! It was so special to see them together again. Jack really doesn’t like these eye exams!! He cried so loud he made the doctor’s ears hurt. It was over almost as soon as it started and we were on our way home again. Right now they are keeping an close watch on Jack’s eyes. Almost all preemies end up with a condition called ROP (Retinopathy of Prematurity) and ranges from mild to severe. ROP is when abnormal development of the blood vessels supplying the retina of the eye occurs. This can be very serious if not monitored and treated. Jack’s ROP is very mild and he’s almost “in the clear.” He’ll go back for another exam in three weeks. Jack also suffered Optic Nerve Atrophy close to or at the time of his brain bleed a few days after birth. This is something that we will not know the long term effects of until Jack is older. This is damage that occurred, and won’t get worse and won’t get better, basically what’s done is done. There is no treatment or surgery for Optic Nerve Atrophy and we were told it’s “wait and see.” We do feel Jack has vision and it’s getting more and more obvious to us. He follows our faces (even without voices) and loves to look at his little Elmo doll. So we take these as very good signs.

Tomorrow Jack sees his neurologist for a check up. He’ll be able to tell us if Jack’s shunt is doing its job by doing a cranial ultrasound and observing Jack’s behavior. We left the hospital with a bulleted list of things to watch out for when a shunt malfunctions. So far everything looks okay when we do our daily checks. We’ll keep you updated on how his appointment goes.
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