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.

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!

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!

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.

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!

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!

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!!!

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.

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.

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!

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!

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!!

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!

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!

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.

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.

Jack seems to be growing right before our eyes! He’s totally outgrown all of his preemie clothing and is now filling out his “big boy” clothing quite nicely. He’s continuing to eat very well – it’s been over a week without the feeding tube. He even gets one ounce of apple juice every day!

We pretty much are still living out of two rooms downstairs. Jack has yet to be upstairs to his nursery and we have yet to sleep in our bed since he’s been home. Right now we take turns sleeping at night on the sofa. Once he is off the oxygen it will be so much easier to move him from room to room. We hope it’s not too much longer! We’ll know more next month after we meet with his neonatologist at Hershey.

Jack has long periods of alertness now. He doesn’t sleep all the time anymore. It’s so neat to see his personality take shape each passing day. He has certain things he loves and certain things he really dislikes. His strength is also amazing us as well. He has great head control and is pushing himself up when he’s on his belly.

Jack is involved in a program called Early Intervention which is a group consisting of physical, occupational and speech therapists. They are coming soon for their first evaluation of Jack. They make sure Jack has all the extra help he needs to catch up and they help identify any delays he may have. Early Intervention helps a lot of children and especially preemies. It’s a proactive approach to facing any difficulties that may exist. We are glad to be involved with such a program.

Have a nice weekend everyone!

We got an update on Jack’s little friend. He’s home now from the hospital with his mommy and daddy! Our thoughts continue to be with them as their little one recovers.

Jack got his weigh-in yesterday….he’s now 8lbs, 1oz!!! So using all that extra energy to finish his bottles has not slowed his weight gain. He’s continuing to gain over an ounce a day! We are so proud of Jack!

This week Jack was appointment free (except his quick trip to use the scale) and this coming week Jack sees his eye doctor and his neurologist – both appointments are at the medical center. Jack enjoys these road trips – we just can’t wait until he can go somewhere other than the doctor!

Jack is doing great. He seems to be in a routine now which is good except for we think he has his days and nights mixed up! He is sleeping wonderfully in his bed through the day, but as soon as we get sleepy and are ready to doze off Jack is wide eyed and not interested in sleeping!

Jack is continuing to take all of his bottles like a pro. He goes to his pediatrician for a “weigh-in” just to make sure he’s continuing to gain weight and not spending too much of his energy and calories taking his bottle. So we’re anxious to see how much he weighs tomorrow!

We became close to two families in the NICU. All of our boys had similar issues including shunt surgeries. We just learned that one of Jack’s little friends is back in the hospital due to a shunt malfunction and there were complications with the surgery. He’s still in the hospital now, and our hearts are breaking for his family. Please keep your thoughts and prayers with them.

Happy Father’s Day to all the dads out there!

Jack is really surprising us! He’s been taking all of his feedings by bottle since Friday. He can take anywhere from 60-90ccs every 3-4 hours. We almost can’t keep up with his demands. Sometimes he is hungry two hours after he eats, but we have to wait a little long than that because Jack should get used to set schedules. During the nighttime hours it is much different. We usually have to wake him to eat and he never is too interested. It’s important that he does eat at every scheduled feeding because he needs as many calories as possible.

Jack’s reflux seems to be getting better. We are starting to lay him down for more extended time periods. It usually takes about twenty minutes for him to start crying. That is definitely better than when we first brought him home and he would cry immediately as we laid him down. It’s probably helping that he no longer has his feeding tube.

Along with his weight gain, Jack’s strength is increasing as well. When he lies on our chests he raises his head and looks all around. That’s great. Soon he’ll be doing summersaults in his crib.