Day 26

Day 26

Jack is doing well. He is eating well (something this family knows how to do!) and now weighs 2lbs, 13oz. Before we know it, he’ll be 6ft tall just like his dad!

Jack was really kicking and moving around this afternoon. He sure can get mad when he wants to! Whenever we are there, and it’s time for his care, we love to take part as much as the nurses will let us. This usually involves changing his diaper, taking his temperature, using a tiny massager on his chest and back (to help loosen any build up in his lungs), dressing him, and helping to get him all tucked in for feeding time. This is something we look forward to all day long! The nurses are starting to show us how to reposition Jack, but we are still too nervous to try!

Thanks everyone, have a good night!

Day 25

Day 25

Jason held Jack today! He fell right asleep in his daddy’s arms.

Jack continued to get his regular feedings and is tolerating them well. His ventilator settings are about the same too.

He also had the ET tube taped replaced today. That wasn’t a pleasant feeling for him. We feel so bad for him when they have to do this, but it is important to keep the tape clean.

It’s amazing that it has been almost an entire month since Jack was born. In some aspects it seems like an eternity ago and in others it seems like just yesterday. We are just continuing to be grateful for the support Jack is getting from everybody and for the little successes he makes everyday.

Day 24

Day 24

We had a nice visit tonight with Jack. His nurse was very informative and gave us information on milestones for preemies. Some of which are graduating from the “Wee Pee” diapers into the bigger ones, which he has done, and getting off that ventilator.

He is doing a very good job breathing in between the ventilator. It is set for him to breath 27 times per minute and Jack is breathing 45 to 50 times. The doctors can’t give a clear time when he will get off the vent. They always tell us that each baby is unique, but as parents, we feel it will be fairly soon.

He continues to be very stable. Occasionally his oxygen level drops a bit but that is just a signal that the nurse needs to suction his ET tube. He is handling his feedings a lot better. He’s up to 18 ccs of the 24 calorie formula every three hours.

We are looking forward to seeing Jack tomorrow, even though we just got back!

Day 23

Day 23

Jack has such a personality already! Even though he sleeps A LOT, we can tell each time he’s going to open his eyes, or yawn or start to fuss or even if he’s just going to sit there and be cute. He’s coming along with his feedings and he seems to enjoy them very much! We are getting more comfortable with the medical staff and the procedures that it’s all becoming part of daily life. We’re also getting more comfortable handling Jack, that when he comes home without all the wires we won’t know what to do!

He is down a little bit more on his ventilator settings, and breathing even more on his own today then he was yesterday. This is such great progress for Jack!

We are looking forward to spending time together with Jack this weekend. Have a nice night everyone!

Day 22

Day 22

Angie got to hold Jack again today! We also took his temperature and changed his diaper. While he was being held it was time to feed him, so the nurse let me help give him his formula. He is up to 17ccs, which is a huge jump from the 1cc he was getting just a week ago. We think that he will not be getting too much more now because he is getting a formula that has a higher calorie content so it is not so much a matter of volume anymore.

Jack’s breathing is improving a little everyday. His oxygen is set at the same as room air, but he is set to take a breath only 30 times per minute. He was set at 40 yesterday. It means his lungs are working better and he is also taking more breaths on his own. Even though his vent is set at 30, he is actually taking about 45 breaths. 15 without assistance!

Day 21

Day 21

Happy, happy, birthday Jack! Three weeks old : )

We just returned from our evening visit with Jack. He was alert and awake when we first arrived, but after having his diaper changed, temperature taken, and getting fed his big 16cc dinner, he went right to sleep. We learned that Jack is now 2lb, 9oz and it seems to us he has definitely grown some!

Jack is totally off his IV nutrients and sugar water, so currently his only IV is the antibiotic, which he will remain on for a few more days just to be sure the infection is gone. They tested his blood today, and it was all clear of the bacteria – great news!

He is still right around 21% oxygen and his ventilator settings are lower. He is taking a few breaths on his own. We are just starting to get the gist of what all of the settings mean. We are certainly getting an education!

He is definitely more alert now that he is off the Phenobarbital and he has not had any seizures. This is wonderful news.

Have a great evening everyone!

Day 20

Day 20

Jack is getting excited for his 3 week birthday tomorrow! He is really showing those doctors. I think he is doing so well because he is surrounded by all his furry friends in his isolette chanting him on.

He is developing quite an appetite as he is up to 15ccs of food every three hours. You can see his little tummy is full. We also changed his diaper again tonight. It seems that Jack always feels the necessity to pee at this time. We don’t care though…it’s cute!

Because Jack is always intubated, he needs to get periodically suctioned to clear the tube of fluid. They send the fluid to get tested for bacteria and yesterday a small amount was found. Today they tested his blood and found the same bacteria. Although infections can be serious, the doctors are not alarmed at the news. He started on antibiotics yesterday and they seem to be working. Jack is showing no signs of the infection like fever or respiratory problems. He’ll continue on the medicine till they no longer find the bacteria.

We found out even more good news tonight. Jack is totally off his Phenobarbital, the medicine to control his seizures. The docs really just want to know if the seizures will come back, but it has been almost 24 hours and there are no signs of them. We are very happy.

Throughout most of the day, Jack has been on only 21% oxygen, which is the same as room air. He is still on the ventilator because his lungs are not yet strong enough to get enough oxygen on their own, but he is on a lower ventilator setting.

Jack was also read, “If You Give a Pig a Pancake.” I think he liked it. I was also teaching him states and capitals…just kidding. His eyes were wide open tonight and it seemed like he was looking around. Elmo was kept away to avoid any confusion.

Make sure to wish Jack a happy three week birthday tomorrow!

Day 19

Day 19

We had a very special evening with Jack. We spent a lot of time telling him all about our day and telling him how much everyone loves him. I got to take his temperature and change his diaper and the little guy didn’t even wait for me to get the new diaper on, if you know what I mean! He was moving his arms and kicking his legs so hard, but after he was done with his care session, he settled right back to sleep. Jason even hummed a few tunes to him. He looked so comfortable and warm in his bed when we left him.

Jack’s Doctor was very pleased that his oxygen settings were down to 21% (room air) for a long stretch this afternoon. She was also pleased that they will soon be able to take him off his IV nutrients and have him depend only on formula for his nutrition. He has no problems taking his feedings. He’ll soon be ready for Grandma Josie’s Sunday dinners!

Day 19

Day 19

Just called in to Jack’s nurse (one of our favorites!) and she said Jack is now getting 10ccs of food and will be getting 11ccs by the end of the night! He is on 25% oxygen at the moment (which is very good) and he is getting some antibiotics to help fight some germs they saw on a culture last night, nothing too serious.

She said he wasn’t having any problems and that he was behaving himself for her this afternoon. Good boy Jack! We will be in later this evening to visit.

Day 18

day 18

Jack had on pajamas today! We were delighted when we got first glance of him and he wasn’t down to his diaper anymore. He was dressed in the tiniest outfit that we ever saw. It was basically a shirt that covered his entire body and Velcroed in the front. Sorry, but we didn’t get a picture because we forgot the camera. :(

Today was a monumental day for another reason… Angie got to hold Jack for the first time! We were both with Jack like we normally are and the nurse asked her if we ever got to hold him. We thought that she meant putting our arms in the windows on the side of the incubator and laying our hands on him so we said yes. Then she said, “No. No. I mean…did you ever get to really hold him?” We were like, “Can we really?” and she said yes.

So, it took a little maneuvering and some teamwork to get all the monitoring wires, IVs and ventilator lines in order so the nurse could gently pick Jack up and put him in Angie’s arms. The nurse was very helpful and also snapped a Polaroid. Jack was able to be held for about 15 minutes and then he had to go back to his bed. It was a great bonding experience and the smile is still on Angie’s face.

He’ll also be up to 9ccs of formula by the end of the night. The doctor said that he was handling his food very well and that he will continue to get increasing amounts.

Goodnight everybody!

Day 17

Jack is still doing well. He is definitely trying harder and more frequently to keep his eyes open. He doesn’t yet focus on anything, but any young baby can only see shadows and movement. In a few weeks he will be able to see his surroundings and all his stuffed animal friends. I hope he doesn’t think Elmo is his daddy.

Right now in his stage of life, he is very sleepy most of the time. Sometimes we feel bad going in and disturbing him, but it is just as important for him to know that we are close. Jack’s nurse suggests reading books to him. We already have several lined up, including “If You Give a Pig a Pancake.”

You would hardly know from looking at him that he just had surgery. He just has a small bandage on the top of his head. The doctors only need to draw the fluid about every other day and it isn’t painful.

day 16

Jack’s head ultrasound showed he does have some fluid build up in his head, a condition called hydrocephalous. This is not the news we were hoping for, but it can be alleviated and corrected with help from a neurologist. His doctors are consulting today to see what the most effective option is for Jack at this time. This condition is common of preemies born as early as Jack, and with bleeds as serious as he had. The doctors will be able to tell us more about treatments for hydrocephalous this afternoon. You can read more about IVH and Hydrocephalus by clicking here.

Jack looked so content last night, as he was again all snuggled in his blankets. They increased his food by another cc, which now makes it 7ccs of food every three hours. This is great progress for Jack. He has no problem digesting, and this will allow him to grow big and strong!

We can’t believe Jack has European friends already! Sassi from Germany, and Leo from Italy THANKS for checking in and praying for Jack!! It made us so happy that we are reaching you so many miles away! Thanks to everyone for your messages. We are printing pages and pages of them for Jack’s baby book!

Day 15

day 15

Jack looked good this afternoon. He had another increase in his food to 6ccs every 3 hours and they decreased his IV nutrients to help regulate his blood sugar without putting him back on medication.

Jack had his head ultrasound this afternoon, and we will get the results this evening when we go back in to visit. This will tell us if he has any swelling, blockage or excess fluid collection.

He also had a special visitor this afternoon, Steph, who gave her love from Tom and Abby as well. It warms our hearts to know so many people care about Jack and his family. Thanks again for your messages, they really keep us going!

As always, we’ll keep you posted.

Day 14

day 14

Jack is now getting even more food (5ccs) every three hours! He is doing well and very stable with his levels. He was down to 21% oxygen during the afternoon and when we left him this evening he was at 28%. His movements continue to increase with each day, and he opened his eyes several times while we were visiting. It’s wonderful to look in to his little eyes!

Jack has another head ultrasound scheduled this Friday. They continue to monitor his head circumference, and they will continue with routine ultrasounds just to be sure there is no swelling or blockage from his hemorrhage. These tests always make us nervous, and as always we hope for a positive result.

He got to meet his great grandparents, and they really loved meeting him. When we left this evening, Jack was comfy in his little bed and sleeping soundly.

Thanks again for all of your messages. We race home each night to read them! Thanks for all of your prayers and thoughts, they really mean a lot to us.

HAPPY 2 WEEK BIRTHDAY JACK RILEY!

Day 14

HAPPY 2 WEEK BIRTHDAY JACK RILEY! We love you very, very much!!!

Grandma Josie and Grandpa Pauly are brining two special visitors this afternoon, Great Grandma Olga and Great Grandpa Chuss. And I am sure they will just love visiting. See you soon!

Day 13

day 13

Jack is once again off the lights and all snuggled up in his bed. You can tell that he enjoys this much better because he is calmer and just looks more relaxed. He is also doing an excellent job digesting his food and now he gets 2ccs of milk every three hours instead of 1cc. They actually repositioned his feeding tube and it made things go down a lot easier. His ventilator settings are once again really good. He’s down to 30% oxygen. He tries hard to open his little eyes.

Check out the new pictures by clicking here!

We’ll see Jack tomorrow. Have a good night everyone.

Day 12

We spoke to one of Jack’s doctor tonight and he explained that Jack is making progress, but reached a plateau that all preemies meet. He has aged 12 days now, and what he needs to do is start gaining weight. He’s been on a regular feeding schedule, but he is having trouble digesting the milk. This isn’t a huge issue and it shouldn’t last for too much longer.

Jack has also been on the ventilator since his birth because he can’t get enough oxygen from breathing on his own, but ventilators are not the best thing for young lungs. In fact, they can be damaging. So we are trying to wean Jack of the ventilator by reducing his settings ever so slightly. As he begins to be able to take all his food and gain the nutrients he needs to grow, his lungs will strengthen. So, the short-term obstacle to cross is increasing his eating.

We left with a real good feeling tonight as well, because when this doctor first examined Jack, he was rather grim in his prognosis due to the bleed. After seeing Jack for three days he is more positive. Jack is responding well to touching and stimulation. He has a firm grip when we place our fingers in his tiny hand. He is moving about much more as well…no more seizures. The best news is that his swelling in his head has actually begun to decrease. We pray that we don’t have to deal with hydrocephalous.

All and all, there have been many ups and downs so far and we’re sure there will be many more. But, tonight was a good night.

Day 12

Day 12

Happy St. Patties Day Jack!

After a phone call in to his nurse this morning we know that Jack had a good night. His blood gases are better than yesterday, and they’ll continue to check them only once a day. He is still getting 1cc of food every three hours, and they did give him a little something to help his pooping problem and it worked, CHEER! So his biliruben levels are down from yesterday (which is really good), and he’ll remain on the lights for just a little while longer. I think he just wants to impress the twin girls next to him with those cool shades! He is also off his insulin again, way to regulate those blood sugars Jack!

We’ll be in to see Jack later this afternoon. We will give him a great big hello from all of you!

Day 11

Day 11

Jack enjoyed his time off the bright lights, but now he has to put back on the shades for the time being. His biliruben levels have gone up again, probably because he has not pooped for a day. He has tolerated his food very well, but the nurses might give him something to get the process going again.

They also said that his movement has increased from yesterday, which is great news. And, his head swelling has not gotten any worse, which is even greater news. He also decided that he isn’t going to let the ventilator do all the work anymore and is taking breaths on his own.

We’re heading in to visit Jack later on this afternoon and we’ll let him know how much everybody is pulling for him. When Jack is older, I’m sure he’ll appreciate all your kind words in the guestbook.

Day 10

Day 10

Just got home from saying goodnight to Jack. Grandma Linda, Grandma Josie, Grandpa Paul, Uncle Ben, and his Great Umpa were in to see him this evening, and I hear that Grandpa Bob and Tina were in to see him this afternoon!

Mommy got to change Jack’s diaper and take his temperature!! His nurse said his vitals were good and he enjoys being snug in his little blankets.

We wished him a good night and told him we’d see him tomorrow.

Day 10

Day 10

We just called in to check on Jack. He is off his bright lights (no more glasses), his levels and blood work are good, they took him off insulin, and he is getting food (1cc) every 3 hours. His nurse said he is very stable.

We added some pictures to the site and we’ll add some of his handsome face as soon as we get them. Keep your prayers and positive thoughts coming, they are working!

We will head in to visit Jack later this afternoon. Have a great day!

Jack, of Hebrew/Anglo-Saxon origin, means: Gods gracious gift.

Riley, of Old English/Gaelic origin, means: Of the rye meadow; courageous.

Wilhelm, of Teutonic/Germanic origin, means: A determined protector.

Day 9

Day 9

Jack had his echocardiogram today as well as his ultrasound. His echo showed that his heart has healed and the PDA has closed. The ultrasound showed that his hemorrhage has not gotten any worse or caused any blockage. We are grateful for this news.

Jack also had some milk for the first time today, which helped him poop for the first time. (I know, I know, this is kind of embarrassing for Jack, but it is a milestone for him). It helps to rid his system of the biliruben build up, which means he may get to give up those cool shades and get out from under those bright lights soon!

Again, we want to thank everyone for their continued support and messages. It really means a lot to us and Jack too!

Have a good weekend everyone!

Day 8

Day 8

We just retuned from saying goodnight to Jack. His ventilator settings are set even lower this evening, so hopefully that is a sign that his heart is getting better. We will find out tomorrow when he gets another echocardiogram. He also has his ultrasound tomorrow and we are hoping for good news.

We never imagined that this site would get over 500 hits in its first day. The support we have received from all of you has been tremendous and is truly appreciated. Your thoughts and prayers are a huge contribution to his progress so far.

Tonight Jack was visited by his regular crew and he got to meet his Aunt Trib who drove all the way from Vermont to visit him!

Day 8

Day 8

Jack was resting comfortably on his belly during our visit this afternoon. He was on even lower ventilator settings today with only 30% oxygen and 35 breaths per minute, which is very good. His nurse even said he was in the NICU’s lucky bed!

Thanks to everybody who posted messages in the last day. Your thoughts are much appreciated.

Day 7

Day 7

We got some good news from one of Jack’s doctors. Jack’s head circumference is actually smaller than last week, which is a good sign. This is a sign that his hemorrhage is not getting any worse. He has an ultrasound Friday and we’ll find out if this is the case.

We have known that he has a PDA in his heart, which basically reroutes the blood flow from his heart and bypasses his lungs. This makes it harder for him to get enough oxygen. For the past few days he has been on a medication to close this and all signs point to that it is working. It is less detectable when listening and an EKG shows that it is getting narrower. We are hoping that it completely closes off in the next day or two.

He has also been suffering from small seizures resulting from the hemorrhage. He is on a drug called Phenobarbital to reduce the severity. It seems to be working as his twitching as greatly diminished. We found out tonight that the dosage is very small. We thought he was on the highest dosage so we are very happy.

Jack has also been continually treated by phototherapy lights to reduce the amount of biliruben in his body. This is why he is wearing the cool shades in the photographs. His levels are still a bit high, but with any luck he will be able to stop receiving the therapy any day now.

All and all, he has come very far in the last week.

Jack had many visitors today including for the first time his great grandmother Nana Wilhelm, Tina and her granddaughter Tori. Grandma Linda and Grandma Josie, Grandpa Paul, Grandpa Bob and Grandpa Ray were also there as always.

We want to thank everybody that has been supporting Jack and us in the past week. The emails, calls, food, cards, visits and prayers have been greatly appreciated and have definitely helped us in this difficult time.

Happy one week birthday, Jack!

Day 7

Happy one week birthday, Jack! Jack is doing well today. After a phone call in to his nurse this morning, we found that Jack had another good night. He is still off his blood pressure medication and has lower ventilator settings, which means that he is doing a better job of regulating himself. We are off to visit him this evening. - Jason

Jack's Arrival

Wednesday, March 5th 2003 started out as a very normal day, but ended with the most spectacular event of our lives, Jack’s birth.

I felt fine all day that day, no strange signs or symptoms that Jack was on his way. I even had a prenatal check up at 4pm and got a good report from my doctor! After my check up, I headed home to check e-mail and as I was sitting at the computer around 4:45pm I felt what I thought was a typical pregnancy back pain. Then about 5 minutes later another, and 5 more minutes yet another. I didn’t think too much of it, I got up to stretch my legs when another pain came. This prompted me to call my doctor. She advised that I lay on my left side and drink a few glasses of water and call her back if I had more than 5 in the next hour. I grabbed the phone, some water, a piece of paper and a pen. I went upstairs and got into bed. I tried as best I could to jot down the times each one came. They didn’t stop coming. I called the doctor again, and she said to give it more time and drink more water. The pains continued every 5 minutes. Jason arrived home from work around 6pm and watched me go through 2 pains, and he called the doctor. She said if we wanted, we could go in to the hospital and they would put me on a fetal monitor to see what the problem was.

We left immediately and sped to the Good Samaritan Hospital, pains still coming, this time even closer together. We made it to a hospital room and the nurses paged for the doctor. Everyone was so rushed and looked so panicked. At this point I thought to myself “I hope I’m not in labor.” Jason stood by me and held my hand, assuring me everything would be okay. The doctor came rushing in and examined me and said I was fully dilated and was going to deliver this baby today. Those words still ring through my ears. Very frightened and panicked Jason called family to tell them I was in labor. I kept thinking “it’s too soon; it’s too early for labor.” I was so frightened.

They looked at jack with a portable ultrasound machine and noticed he was in a transverse position, basically he was “stuck” and neither head down nor feet down. The doctor said had he not been “stuck” like that, I would have delivered him in the car! This prompted him to call for an emergency cesarean section.

Just like a scene from the TV show ER, all kinds of doctors and nurses fully covered from head to toe in gowns, hats and masks wheeled me in to the operating room. The pains still coming they prepped me for surgery and listened to Jack’s heartbeat. I heard the nurses say they called Hershey Medical Center’s Neonatal Intensive Care Unit transport team, and they were on their way with an incubator. They dressed Jason in protective clothing and he held my hand and stood by my side. They did not have time to give me spinal medication, so they opted to put me under full anesthesia.

I heard the sounds of voices and saw the operating room lights and felt Jason’s hand slowly drift away almost like I was going under water. Jack was born at 7:19pm. Then, (it seems instantly) I was coming back up from the deep water and Jason said “the baby is going to live.” Those were the best words I have ever heard. Still foggy and groggy from the anesthesia, I looked at Jason and we both said his name should be Jack. They wheeled me by baby Jack and I put my finger in his tiny hand and he grasped it and I fell in love!

They immediately rushed him to the Hershey Medical Center’s NICU and stabilized him and gave him all the support he needed to fight for his life. They called as soon as they got there to give us the news that he was stable and they were going to take good care of him.

Jason went to visit Jack that night and took digital pictures so I could see him. After recovering for two days in the hospital, I finally got to meet our precious son, Jack Riley.