It is snowing today

There is a blizzard warning out for Washington DC today; but Jensen doesn't care, and it isn't just because he is in Indiana. He is just happy to be sitting in his chair and waving hi to you all! He loves everybody and smiles all the time. No, that is not an exaggeration, he smiles all the time. We all have a lot to smile about, but Jensen seems to value life more than anyone. How is that possible at his age? All things are possible with God.

Autum in the midwest, I am feeling the best.

I grab my feet now! When I am not sitting up.

Pa Pa is trying to get my toy...funny man

Jensen driving the boat

Recent Photos

This was Jeff's bib.

Jensen goes boating

I can remember when Jensen was in the NICU at the hospital when he was a couple of months old, Jeff would dream about Jensen going boating. The dream came true sooner rather than later. The pictures here are on our boat, but Jeff also had his sailboat out with us on Brookville lake. Jeff, Anna and Jensen stayed on the sailboat and Sophia stayed on our boat. Both boats were rafted together for the night.
Jensen is doing well. He still has the stomach button, but they don't use it much if at all. He is eating and drinking normal, and really, just to look at him you wouldn't know all that he has been through. Thank you Lord.

Dream come true.

Jensen swings with Mommy

Jensen goes swimming

Jeff and Anna's power line was knocked down by a thunderstorm last week. It tore the electric service right off the roof. The insurance company put them up in a hotel while the power was off for a few days. They stayed at a motel that had a swimming pool, and they took advantage of that. If I remember right, they moved back in at home last friday.

Growing daily

Jensen is now over his ear infections and general illness. Last week he went to the doctor for a check up and he now weighs 13 lb and 10 oz. The last few weeks he has been taking more and more of his milk by bottle (rather than stomach tube). The new removable stomach tube (button) is really great since it can be disconnected. Jensen is getting stronger too, grasping more, holding his head up more etc. Just looking at him, breathing aside, you would never know what he has been through. He loves to smile; as if he knows he has a lot to smile about. Thank you Lord.

Blowing bubbles

I blow bubbles now.

That makes me happy

Jensen's family

Jeff getting the sailboat ready for the family

Sophia with Peep on the slide. No, they didn't go down together!

Jensen grabs noses now. He liked getting We Wa's

I promised a "button" picture.

One of Jensen's latest checkups.

Proud momma, Anna, at a social event.

The prayer request now might be for the entire family. Don't think this hasn't been hard on them. The Bible says that we won't be given more than we can bear though. Please take a moment and lift all four up to the Lord. Thanks.

Heads up!

Jensen is feeling better now. He can also hold his head up now!

Ear infection

Just a short update. Jensen's doctor found that he has an ear infection.

Jensen got his button

Jensen looking at his sister Sophia

Jensen went to two doctors yesterday; one scheduled and one not. The first was his appointment to get his feeding tube removed, and replaced with a "button". The original tube "PEG tube" was about a foot long and just dangled out of his belly. The doctor pulled it out with a "pop" as it had a flexible plug on the inside that kind of folded back when it was pulled out. Jensen didn't appreciate that. The new one as you can see in the picture has a tube attached also, but it is removable (I don't have a picture with it removed). It is a low-profile gastrostomy device (LPGD). When the tube is removed, what is left is the "button". The advantages are: he is less likely to pull it out, can be concealed under clothes, can be imersed in water, and is just easier overall to deal with. This one has an inflatable ballon on the inside to hold it in. As a reminder, Jensen gets his medicine and some of his food through this tube. As his heart is still enlarged, it pushes on his stomach (and lungs) creating undue pressure. Last week though his heart was down to 80% of what it was.

Jensen also got some vaccinations earlier in the week. Possibly between those and still recovering from his illness last week, he has been vomiting. Hence the unscheduled visit to the doctor yesterday afternoon. At our church we have a weekly "Praise and Prayer" get together. In the life of a Christian, as in Jensen's life we should do both. I give Praise for how far Jensen has come; he is our little miracle. We all must continue to pray for him though, as he still has a way to go; on his heart size in particular for the long term, and this illness in the short term. Thanks.

Jensen at the hospital last night

Jensen better

Jensen is much better now and is coming home this evening. Seems it was a virus after testing for bacteria. Jeff and Anna wanted them to change out his feeding tube while he was there, but they decided to wait for his appointment on the 9th. They did an echo gram and his heart is smaller!

Fever is lower

Jensen, mom and dad are back in the exact same room at Riley Hospital. His fever is lower this morning after prayer and antibiotics. They are going to do an echogram of his heart while he is there, but they feel it is just an illness and nothing to do with his heart. His heart rate was way elevated last night but is down this morning. A week from today he is scheduled to get his "button", which is a low profile feeding tube. I'll let you all know when Jensen gets home, hopefully today.

Mr. Jensen caught something

This picture was taken yesterday, but Jensen is not smiling this evening. He came down with something and has a fever. They took him to Riley emergency room, and due to his fever, they have been testing him and wanted to keep him overnight for observation. This is the first time he has been sick per say. I would venture to say it's rare for a five month old to go this long without getting something. Of course he was insulated somewhat in the hospital from bugs. We will see how it goes, I am glad he is at Riley though.
You all know what to do...pray, pray, pray. Thanks.

Praise, prayer and those eyes

I continue to thank and praise God for all he has done for Jensen. There has been a great team of dedicated caring individuals and angels that He has used for His marvelous work in Jensen.

I especially want to give thanks to all the people that have been praying and continue to pray for Jensen. I keep hearing new stories about people that have been praying. The testimony of Dan who commented a couple of blogs back, demonstrates the dedicated prayers of so many people that have been praying selflessly, simply because the love of God dwells in them. I know of a church in Nairobi Kenya that has been praying for him. I have heard reports from quite a few people that report their Sunday school classes have been praying for him. The west coast, to the east coast, to the gulf coast, I get reports of people following this blog to pray. I had no idea how far this blog would spread, it just goes layer after layer deep. God has heard every prayer of every saint, and Jensen has been touched by the finger of God. Praise Him!

I will keep posting pictures for you all, not only because I think he is so cute, but there is just something special about him, and I want to share that with you. I don't mean special in that he is better than other children, but special in the way he was chosen to give glory to God. Those eyes...did you know that Darwin said in his book "Origin of the Species", that he could not imagine how evolution would have developed eyes? That is one of the few things Darwin had right!

"The eye is the jewel of the body."
Henry David Thoreau (1817-1862) American naturalist, poet and philosopher.

Tube upgrade soon

I have been on vacation recently. I have been keeping up on Jensen's progress however. The big news is that he is supposed to go back to the doctor next week to get his feeding tube changed to a button. Jensen has been trying to grab the tube and it could pull out of his stomach. Jeff and Anna said they have been putting the tube under his clothes lately to keep him from grabbing it. The button is flush with his stomach and has a little cap that snaps shut. This should be an outpaitent procedure.

Almost 12 pounds

Jensen is growing day by day. He is up to 11 lbs 7 oz now.

A smile a day, keeps the doctor away.

Jensen continues to thrive and is a happy little guy. He weighs 10 lbs 12 oz now. He went to the Cardiologist Monday, and after looking at the echo cardiogram, told them they didn't need to come back for a couple of months. He is still taking all his medicines through the peg tube, as well as most of his milk. He does get some milk through a bottle, but seems to get tired of sucking on it after awhile. He is pretty content by filling his stomach via the tube, every three hours.


Jensen can't wait to play in the backyard with his sister, and cousins; Lillian, and Josiah!

Latest Pictures

Singing Glory unto the Lord

Jensen is getting stronger and stronger day by day. Now that he is home, they are all bonding as a family unit much better. Jensen is now able to squirm himself about 90 degrees in his bed. When he is being held, he can raise his head up now too. This is really cool; now when Anna sings to him, he sings back! No doubt, it won't be long before he is singing glory unto the Lord and shouting aloud with a loud voice of triumph.

Psalm 47 1 Oh, clap your hands, all you peoples!
Shout to God with the voice of triumph!
2 For the LORD Most High is awesome;
He is a great King over all the earth.

Jensen goes Italian

Another first; Jensen went out with the whole family to Olive Garden restaurant. The word is he liked it; just the atmosphere not the food of course. It's hard to get pasta down his tube, but not as hard as the meatballs!

Picture from this evening

Jensen went to see his surgeons at Riley today. They looked at an x-ray of his heart, and thought it looked smaller. They took him off of a potassium sparing diuretic, and cut his lasix in half. His severe diaper rash has cleared up amazingly fast. Thanks for praying for that. They have him on a special diet for awhile to see if he is lactose intolerant. All in all, he is doing great.

X-Ray results good!

Wanda and I are back from a few nights on the Erie canal. I did manage to post the last blog from there though.

Lately, Jensen has had a bad diaper rash and some rectal bleeding. He had an x-ray yesterday and the results are good from that. I suppose they were looking for evidence of an pneumo thorax, or NEC. We are thankful that is not back. He is going to a GI specialist soon.

Actually this afternoon he is going back to Riley to see the Cardiologist for a check up. When I get more info, I will post that.

Whaaat's uuup...

Jensen was 10.2 lbs on Friday. He went to the pediatrician, she wanted to give some vacinations, but the Riley doctors wanted to wait on that. Speaking of Riley doctors, Jensen goes back on Wednesday for a check up with his cardiologist.

There is no place like home

Jensen is prospering at home. He eats every three hours whether he is awake or not, via his feeding tube. He really looks good! I think he goes back to Riley in a couple of weeks. Meanwhile, he is growing stronger day by day. Thank you Lord. All good things come from Him.

First 24 hours at home

Jensen and family left the hospital this morning about 12:30am. It was the first time that the heart leads had been off for...ever, at least in Jensen's time frame. Jeff said it was weird being off the monitor; not being able to see what was going on inside, and no alarms. Anna said that when they put him in the car seat outside, he was just looking around trying to figure it all out. Jeff was showing him some tree leaves on a small tree in front of their house. Bottom line; there is a whole big world outside the hospital just waiting for exploration and learning.

He was a good boy and slept between his three hour feedings. I may have said it before, but he is just a fine, polite fellow, who only cries once in a while. Sophia stayed with us last night and today. Anna stayed at home with Jensen, while Jeff was working (to pay off the 2.2 million dollar hospital bill-just kidding) today. Jeff picked up Sophia after work to take her home, she was excited to go see "brother" in his room. The plan this evening was for Jeff to stay with Jensen, while Anna and Sophia were going shopping. All in all, life is good and near normal now.

Contrast!!

I have been wanting to post these two pictures together for some time.

BEFORE 4/23/09



AFTER 5/9/09

HOME!!!

Yes, after 13 weeks and 5 days, Jensen is home! Jeff and Anna just found out today for sure. They were going to go to the hospital at 10pm to start signing him out. I got some last hospital pictures tonight, since it may be awhile before I get more. Jeff and Anna want to be home by themselves for awhile, which is understandable.

Anna was working this evening and Jeff was cleaning up the house (Wanda helped). Speaking of Wanda, she has been a super sitter for Sophia who is a joy. Others have helped by watching Sophia too, which has been a blessing during this trying time for Jeff and Anna.

Now for some medical details. Jensen's PICC line infection is very, very minimal now. He is going home on several medicines all oral. A diuretic, ace inhibitor, beta blocker, two stomach medicines, anti-arrhythmia and aspirin. His heart rate and rhythm is still a little unstable as is his breathing. His oxygen saturation is good though and he has been taking some breast milk by bottle. The rest of his feeding is handled by the g-tube, as well as the medicines which I believe are all liquid form. His scar is healed so wonderfully, it is amazing. Tonight he was the most alert and engaging that I have seen him. Jensen has finished his methodone treatments which were weaning him from the narcotics he took for pain. He weighed 9.5 pounds today.

I know the story is not over; this is the end of the first chapter though. I give all the glory to Jesus for his progress. What percentage was supernatural and natural healing through the doctors and nurses, will never be known this side of heaven. I know some nurses and doctors are regular blog watchers now, so I will take this opportunity to thank you all for a job well done. We thank all of you that prayed for Jensen and his family from the bottom of our hearts. Prayer is one of the corner stones of our faith.

I will continue to keep you updated in the future. For now here are some more pictures...

Four generations of Reilly men

Our crab apple tree

What does a crab apple tree have to do with Jensen? Well, today Wanda and I were in our backyard, and I looked up at this tree and remembered last summer I climbed it with my lopper pole, and trimmed it. It is such a good climbing tree. Anyway, I remarked that it would be great if Jensen would be able to climb that tree when he is about 9 or 10 years old. As a matter of fact that was my prayer for him today, which basically would mean that his heart wouldn't be much of a restriction on his activities. I am always asking the Lord for more.

I just talked to Jeff on the phone as I was writing this. Jeff asked me if I wanted to talk to Jensen too, since he was awake and talking to daddy. He is doing good, except he does have another prayer need (besides tree climbing), and that is an infection where they took the PICC line out. The PICC is a IV line in his arm that goes into a vein all the way to his heart, for giving medicine or in Jensen's case, taking blood samples. I guess it was getting infected where it went in, so they took it out yesterday.

The boiler went out at the hospital yesterday and it got real cold last night. Jeff was estimating about 60. He said it is fixed now though. It is very likely that Jensen will go home this week. I'll let you know.

I think Sophia loves "brother".

Isn't he cute, even when he puckers?

Not going home yet

Jensen's doctors decided that they would like to try some digoxin on his heart arrhythmias. Therefore, he is staying at least until next week. He is still doing better on his eating though. Most of his medicines are given through his g-tube, but the heparin has to be a shot in his leg. He cries when he gets that :(