I have started a new page - see Aunt Chris Page 2
June 29, 2008
Riley is still at CHOP the main concern seems to be about the Artery that they did the Heart Cath in, because he is the type of child who will need many more of these procedures it is very important to keep that artery healthy. They were having a problem getting a good pulse in his foot as well yesterday. Granny and Pop-Pop went to see him and they said he was back to his old self smiling and cooing! He really liked his nurse from yesterday they said every time she came in and talked to him he would get a big smile. At this time I am unsure if Riley will get to go home tonight or tomorrow.
Keep up the prayers and keep signing the guest book.
Thanks everyone for your support.
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June 28, 2008
Riley had his heart catheterization on Friday and the results were not what we had hoped. When they do the catheterization they can see much more then they can with the Echo. When they did Riley’s heart cath they found that there was no blood flow coming from the top of his left lung and very little blood flow coming from the bottom of his left lung and that the pulmonary veins were obstructed. They decided that these issues were better left for his surgeon then to try and do a temporary fix in the cath lab. The issue with his lung is very serious of not treated promptly he could lose his lung. Riley ended up spending the night last night at CHOP as a precaution but he appears to be doing fine and is expect to be released this morning.
When Carol and Darren spoke to Dr. Romen who performed the heart catheterization he said that this is where the Heterotaxy comes into play. And, that this is why the Heterotaxy is so hard to treat. They are however going to continue to treat it. Dr. Spray, Riley’s surgeon is out on vacation but Riley will be placed on his schedule as soon as he returns which is the week of July 7th.
This was not at all what Carol and Darren where expecting to hear. Riley has been doing so great. His color is great, he is eating well gaining weight, and doing all the things a 3 month old would do. Needless to say that hearing this news yesterday was devastating for Carol and Darren, but also for the rest of us who thought they were going to come out and tell them that he had a mild obstruction that would be treated at his second stage heart surgery.
As I said before Riley will be scheduled for surgery sometime during the week of July 7th, this surgery is not his second stage heart surgery this is only to try and repair the pulmonary veins in his lung.
Please keep Carol, Darren and Baby Riley in your prayers, and as soon as we know when his surgery is scheduled we will post it on the site.
Thank you all for your support and prayers keep it up! And, if you are reading this please leave your well wishes for Riley in the guest book.
*******As I was typing this update I got a call from Granny Kay who told me that they are not going to release Riley at this time. The pulse in his leg is not what it should be so they are going to hold him for now. The information we got seems to be sketchy right now so check back tomorrow morning for an update.********
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June 8, 2008
Well we had another family member get to see Riley for the first time. Uncle Keith has been deployed for the last 7 1/2 months in the Navy and was home this weekend and stopped over to see the little man. Unfortunately, Aunt Katy was at sea so she wasn't with him. Miss you Aunt Katy! So here are some pics of Uncle Keith and Riley and of Riley's new swing at Granny & Pop-Pop's he seems to like it.
While, I know the pictures are great a video really shows his little personality.
Riley on the changing table at Granny & Pop-Pops Riley in his new swing at Granny & Pop-Pop's House
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June 7, 2008
Children's Hospital of Philadelphia ranked #1 children's hospital by WebMD check out the link:
http://children.webmd.com/news/20080530/2008-best-childrens-hospitals-listed?ecd=wnl_prg_060508
We new it before, now we know it for sure, Riley is getting the best care in the country.
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June 4, 2008
Well, it has been two months since our little Riley came into this world. What a miracle he has proven to be. He was born with no complications, had his surgery without any complications and has just shown everyone what a strong little boy he is and what the power of prayer can do for someone’s life.
If you have read Carol’s blog page then you saw that the O’Brien’s got some bad news today. The vein issue being the only one that there isn’t a quick or ultimate fix for, so it is very scary for Riley and his Mommy and Daddy. I think that we all look at Riley either in his pictures here on the site or in person and we see what appears to be a very healthy PINK little boy and we forget all the stuff that could be going on inside.
So, its time to get those prayers working again, we need our little miracle to keep doing as well as he has been doing and make sure that his insides look as good as his outsides! The little man needs your help. I know he has a huge fan base out there so let’s hear it. This news is very hard for Carol and Darren so maybe stop by and leave your wishes in the guest book. But most of all “Keep Praying”.
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May 26, 2007
Hi, Everyone I have a couple of things I wanted to tell you about. First, Grandma came from Las Vegas to see baby Riley. Because we didn't realize he would do so well she booked a date that we knew Riley would be at home. Who would have thought he would have been home for weeks. But hey that's our Riley. He does the unexpected! Here are some pictures of Grandma and Riley.
I also was able to get some great Daddy and Me pics!
And, I had to do a Riley Photo Shoot so you could see how much he is changing.
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May 3, 2008
Today big brother Christian made his First Communion so Aunt Chris got to baby sit Riley. Christian did come over so I could take some pictures so here is Christian all dressed for his First Communion and Riley at his visit with Aunt Chris.
Today's photo shoot you know Aunt Chris can't just take one!
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April 27, 2008
Yesterday we had Riley's Big Brother Christian's Birthday Party. While Riley didn't get to go bowling he did come to Aunt Chris's for some cookie cake and to sing. He his still doing wonderful as you can see for yourself.
Riley was trying to sing! Riley and Pop-Pop "That Pop-Pop is a funny Guy"
Now Riley isn't Laughing "oh Ok this is better" Now he is really listening Riley and Uncle Lou
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April 24, 2008
Just a quick update. Riley is still doing great! Yesterday I went to Carol's and gave Riley a bath in the sink we took pictures of course. Today Aunt Katy came home and got to see Riley as well. Here are some pictures from today and yesterday. Carol is going to start blogging again soon so I will put a note on the banner to check her page when she does.
Riley in the Sink - See no screaming this time - I think its the bubbles OOhhh clean hands taste good OK I am ready to get dressed now!
Much better Riley and Aunt Katy
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April 22, 2008
Today I went with Carol and Riley to see his Cardiologist; she said he seems to be doing well. Over the weekend he pulled his feeding tube out and he has been eating all his bottles so Carol didn’t put it back in that seemed to be her only concern. But we or I assured her that if he wasn’t eating all his bottles that the nervous Nelly Mom would most assuredly put that tube back in. They sent him home with some kind of monitor. They put the little tape things all over him and connected him and he will be monitored for the next 24 hours and then Carol will Fed Ex’s it back to them. They did an EKG she didn’t seem to have any concern of anything she saw on it. She took the stitches out that were left from his chest tube. He took it like a trooper. He had lost some weight since he was born but he is back up to his birth weight.
He also paid his first visit to Dr. Zalut his pediatrician. I don’t have an update on that visit.
Oh and one more thing. Yesterday was Riley’s BIG BROTHER’S BIRTHDAY! HAPPY BIRTHDAY CHRISTIAN!!! :-)
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April 20, 2008
PM Update
We went and spent some time with baby Riley today. I say we it was Donny, Mikey, Lou and I. And, while we were there Aunt Terry also came over for a visit. Today I got to give Riley a sponge bath and lets just say he didn't like it. He isn't able to have a real bath yet because he still has stitches in his chest and they said his boo boo can't be soaked in the tub. So we got him naked to the diaper and started a his head and well he would scream. And, Riley isn't allowed to get really upset because it isn't good for his heart so I had to keep picking him up and hugging him, he would stop crying and I would put him down and wash some more. It took a while but we got him washed. While we were there Uncle Louie and cousin Mikey put Riley's swing together, we think he likes it! Here are some pictures from today.
Donny holds cousin Riley for the first time Uncle Louie Puts the swing together, Hum where did this go? Riley not so happy, Yelling "Aunt Chris I don't need a bath I don't smell put my clothes on"
"Don't put me back down Aunt Chris" "You are not my favorite person right now" "AAAHHH I feel better"
"Hey are you going to brush my hair" "I really like my new swing"
AM Update
Sorry I haven't updated. Riley is home and doing well. He has been eating all of his bottle and Carol really hasn't needed to use the feeding tube. The nurse from CHOP came and paid a visit to Riley yesterday. He said he looked good and if he keeps eating Carol can take the feeding tube out. Because of his heart condition he has to eat every three hours so Carol has to set her alarm clock through the night and wake him up and feed him. So much for letting that sleeping baby sleep in Riley's case he has to eat. We will be going over to visit this afternoon so I will get some pictures and more updated information.
Keep praying.
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April 17, 2008
Riley didn't get to come home today. He had a delay. Forgive me if I get this mixed up but I think what Carol said is that they did and Echo and when the Attending read it there was a time where Riley's heart did a triple beat. I am not sure if I got that all right and Carol may correct me, but the long and short of it is that he was delayed a day because they wanted to monitor his heart. Carol said it appears to only have happened this one time. So, hopefully Riley will get to go home on Friday. Say a prayer!
Thanks for your support. Check back tomarrow so see if he made it across the bridge.
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April 16, 3008
Sorry I didn't update yesterday. Riley is still doing great! He is doing so well that as of right now he will get to go home tomorrow! They had told Carol at least two weeks from surgery. This little guy is just amazing. We were one week from surgery on Tuesday. He is drinking more and more of his bottle and needing to use the feeding tube less and less. But it looks like he will still come home with the tube. He is not on oxygen anymore, his color is a little off because of that but I think he still looks great!
Yesterday Granny and I took our CPR class and we got to hold Riley for the first time. Riley also had his upper GI and it showed that he does have the malrotation, but as of right now we don’t know what that will mean for Riley. They did say that they will not due any surgery until or unless the malrotation causes an obstruction. I am still waiting on more information from Carol on the meaning of all of this for Riley.
I don’t know if any of you read the guest book but Carol did leave a message for all of our readers on the guest book yesterday.
Keep praying .
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April 14, 2008 Special Request
Everyone who has been reading has heard me refer to GG well here she is, below is a 4 generation CRONEBERGER picture. So, we have Riley Curtis O'Brien, Carol O'Brien (Riley's Mom) , Howard Croneberger, Jr. (Dad/Pop-Pop) and Charlotte Croneberger (the one and only GG or Mom-Mom depending on your generation). To Riley she will be GG.
April 14, 2008
Riley has Graduated! Yep, he graduated to the Step Down Unit. No more ICU! He is in private room with a crib, a TV, PS2 and Mommy and Daddy to fawn all over him all day with no one to stop them. Yep, Carol can sit and hold him all day long. His room also has a couch so Mommy doesn’t have to go sleep in the cubby hole anymore. She gets to spend the entire night with Riley. I am guessing he will have to fight his brother for use of the PS2.
He is drinking almost 45 cc’s of formula. That is the goal number so he needs to keep it up so he doesn’t have to go home with a feeding tube. HOME that’s right I said HOME! If all continues to go as it has he will be HOME by the weekend! He is truly a remarkable little boy. I think he just wants to go home and sleep in his bed with out anyone poking at him.
So now we prepare for Riley to come home, Mommy, Daddy, Granny Kay and I are going to do a CPR class just incase. And, Mommy and Daddy will also take a class on the feeding tube but we hope they don’t have to use it.
Keep praying! It’s working. He is surprising all the doctors and we like that. He still has a long road but it seems as though with all the support and prayers he is getting maybe it won’t be so bumpy.
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April 12, 2008
PM Update
Today progressed much as we had hoped they removed the wires from Riley’s heart with no complications. They removed the arterial line from his hand. The regular IV line was falling out so they moved it to his leg but it is capped, he gets one medicine a day through the IV and incase something changes for right now they need to keep it in. They are hoping that they will take the IV out of his belly button by tomorrow morning. Then with the exception of the one IV line he will be free of most of the lines. He is still hanging on to his oxygen for now. He is eating like a champ; he is up to 45 cc’s. Everyday a little more, that’s all we are hoping for right now.
Well, since he is just about free of all of his lines he was able to put on a T-shirt today! No more naked kid. T-Shirt today, being held by Mom and Dad all day right around the corner, next step home! Here is Riley in his lil shirt. And, wow look at that hair.
AM Update
Riley has proven himself to be a remarkable little boy. He seems to be picking up on the feeding. We all had faith that would happen. On Friday the most he would eat is 5 cc’s at a sitting now he is up to 30 cc’s. Yea Riley! If you read my other posts then you remember that 30 cc’s is an oz, most babies are eating 2 or 3 oz’s at his age. So, from what I can see is really is getting the eating thing down. He is doing so well that they might be able to take out the feeding tube.
They tried over night to remove him from the oxygen but they said he wasn’t ready. He is only getting a small amount of oxygen and remember they messed with the veins from his heart to his lungs so he may need a few more days and that is OK.
This morning on rounds they told Carol that they might be able to remove the small blue wires that come out of his chest. (This is the piece of gauze that is right under his heart boo boo; they are wound up and covered so he doesn’t pull on them.) These wires are laying on the outside of his heart incase they needed to shock him but he hasn’t had any heart issues so they think that they will be taking them out. Also, he has an arterial line in the artery in his arm. That is that mass of lines on his little arm, this one may come out today as well. Next would be the lines that come from his belly button. One by one they are all being removed. Soon he will be able to be held and maybe even where some clothes. Yippee! We are afraid he might turn into a nudist.
Today Riley will be having lots of visitors, from what I am told GG (Mom-Mom), Granny, Pop-Pop, Aunt Terry and Christian will all be visiting. So today Aunt Chris will stay home. I see him a lot so I will let everyone else have a chance. He is till in the Cardiac ICU so only 3 people at one time can be at his bed side.
Keep signing the guest book. Carol and Darren are reading the web site from the hospital and they love your notes and keep praying. I will say again I do believe your prayers have made Riley the strong thriving little boy that he is.
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April 11, 2008
Riley is still doing wonderful. We are still learning how to drink from our bottle so we had to get a feeding tube to help us get all our formula in our tummy. We are only drinking 5 cc's at one time, sounded like a lot to me but it takes 30 cc's to make an oz. Ooohhhh so it really isn't that much. But he is trying. We are hoping he will drink a little more every day but if he doesn't he will have to go home with the feeding tube. I was able to get some pictures and some video today. Today was the most I have seen him awake so you know I had to get that on video. He is a strong little boy. Keep up the prayers here the the pics and the videos.
Riley waking up Drinking his bottle Sitting up checking out the rest of the NICU
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April 10, 2008
Riley seems to be doing great! Our little miracle baby. Today he got to eat for the first time. Carol said he isn’t real sure what he is supposed to be doing. He was able to get some down and he drooled a lot. The test will be now how much can he get down and what happens when he does. We still don’t know exactly what is happening with his abdominal organs to hopefully he will eat and everything will do what it is suppose to and it will come out the other end. This will be his next hurdle I believe.
Thanks for all your prayer.
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April 9, 2008 pm
We did a lot today! Today we got our chest tube out and our breathing tube out. We are a very lazy lil boy. We have been nicknamed slug and turtle. He just likes to hang out under his heat lamp and sleep. Today the nurse, Jen, picked him up and danced him around a little to get the juices flowing and then she gave him the pat down. She took a little blue cork looking thing and she patted him on the back with it and on his front with it. This is to break up the mucus in his lungs. He fussed at first then he realized he kind of liked it and then he just starred at her while she did it.
Today Aunt Chris and Riley spent a few quality hours together. Mommy and Daddy went home and got a little brake from the hospital today. This was the first time that Carol has left the hospital since Friday. So while Mommy was gone we listened to our music we had a long talk and then he danced with Jen the nurse and got his pat down. He had a very productive day. Here are some pictures from today. I took them with my phone so they aren't so great but you can see his boo boo.
April 9, 2008 am
I don't have anything new to report. I spoke to Carol this morning and she is waiting to hear when they will remove the breathing tube and the chest tube. I am going to go up and sit with Riley this afternoon and Carol and Darren are going home for a few hours. Carol has been at the hospital since Friday she really needs a break. I received some pictures from Mary at Carol's office and they were great so I have to post them. If I get more information I will post again later. .
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April 8, 2008 pm
Granny and I left the hospital at 7:30 he was still on the respirator but he was down to 35%. He was taking some breaths on his own but the nurse said he was being lazy and letting the machine breath for him. He looked great, his color was coming back he was a little yellow but they said that was normal. He only had a little blood come from his chest tube so I suspect it won't be long before that gets to be removed. When we left the hospital Riley was laying very quietly listening to his bed side music. He really had a great set up going on.
He is doing wonderful keep up all the prayers. Stop over the guest book and say "HI" to Carol and Darren.
Here are pictures as promised from the day of Riley's surgery.
Riley and Mommy before surgery
April 8, 2008 am
Riley is out of surgery, he is doing great. They did the shunt and the vein repair. They didn't do the Ccam. They think he will be able to come off the respirator today. I think that is great they had said three days yesterday now they said maybe today. This kid is a trooper! The consern at this time is the veins that go between his heart and his lungs they are very narrow. There is nothing they can do to make them wider and nothing to keep them from getting obstructed. Right now they are good and doing what they should be doing but Dr. Spray says this will be the long term consern. I am still at the hospital Carol and Darren just went to see Riley.
We haven't heard anything yet about his other organs of if they are going to be a problem. If he doesn't need any other surgeries and doesn't have any set backs he could be home in as little as two weeks.
I will check in again this evening to fill everyone in on how he is doing. I also got a couple of pics this morning that I can post. Carol and Darren were able to hold Riley today.
Keep Praying!
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April 7, 2008
Riley is doing great! I just talked to Carol and he is scheduled for surgery tomorrow April 8th at 8:30 am. From what Carol has been told right now they are going to put in the shunt, do the vein repair and remove the Ccam from his lung. The procedures that they will be doing with the exception of the shunt are subject to change.
Carol spend the night at the hospital in the family room she described it as a closet with a bed. She seems to be doing well a little nervous of what tomorrow will bring.
They have told her that he will come out of surgery on a respirator and will be on muscle relaxers so he won’t be moving around much. He will be on the respirator for a few days.
Keep your prayers coming!
Also, for those of you that have signed the guest book, Thank You and please feel free to sign again. For those of you who are reading and haven't signed go ahead and sign I will be printing the page and bringing it to the hospital for Carol to read. Your prayers and well wishes mean a lot to Carol and Darren. I get the site reports and I know we are getting 100's of visitors to the site every day I know Carol would love to know who all of you are. I want to thank all of you again for checking on Riley every day and for your prayers, if you know me, you know I am not a religious person, but I do believe that the prayers are working! Look at that little face above, how could you dispute it!
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April 6, 2008
Riley is still doing great, still breathing on his own, pink and beautiful. Carol is sore and tired and she will be released from HUP today. They have family rooms where she can sleep so she won’t actually be coming home yet. She will most likely hang out with Riley. Darren was tired as well; the plan for last night was that Darren would come home and get some sleep and Carol would go back to HUP and get some sleep. Riley was stable and being well cared for so this was the time to catch up on that sleep.
Yesterday they came and did a very long ultrasound on Riley. They started at his head and worked their way down. They said they were mapping out his anatomy. I left during the ultra sound but Granny Kay was there for a large part of it and she said that the u/s tech and the MD kept saying "this baby is amazing". In laymen’s terms his insides are all messed up, but working, for now and can be fixed. They seemed kind of amazed that he was breathing so well and was pink and that his stats were so good. They really didn’t give and specific answers or information but they did confirm that he didn’t have a spleen. They will now take this information back to the team and use it to build a map for the surgeons so they know where everything is when they cut him open. I think the more information they have now the better. I believe that the amazement of the doctors of how well Riley is doing is a testament to all the prayers. THANK YOU! Keep it up they are working.
Riley had some important visitors yesterday. His big brother, Christian, came to visit him and his GG, in case you don’t know GG is Mom-Mom to me and Carol and my Fathers mother. While I didn’t get any pictures of them I did snap a few that included Dad so here they are.
Riley is wearing his own hat and this Dad brought in and his own pacifier green of course his the Irish baby. And, once again he holds Mommy's hand tight.
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April 5, 2008
I just spoke to Carol, she and Darren went over to CHOP this morning around 5 to visit Riley. She said they did the Echo last night and his pulmonary veins are not obstructed. One more good thing! I think every little bit of good news is great. I also added to the first page that he is 19 inches long they measured him last night after I left. He is still stable and breathing on his own. I will update when I have more information.
Keep up those prayers.
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April 4, 2008
Baby Riley has Arrived!
Carol and Darren went to HUP this morning at 7:30. She was still at 3 centimeters. At about 11:00 they broke her water and she went to 5 centimeters and they started the induction. After about an hour or so Riley’s heart rate dropped and a rush of people came into her room. They stopped all the drugs and she progressed on her own for the rest of the time. Darren, Mary Kay and I ran to get a bit to eat because they were going to put a monitor in to get a better reading on her contractions only to come back and find that they had moved her to the OR. OOOPPPSSS! We were in a panic for a second but we found out later it was a precaution because Riley’s blood pressure dropped again. She pushed for about 15 minutes and he arrived at 4:18 this afternoon weighting in at 6 pounds 15 oz. He was pink and Dad was able to cut the cord then they took him next door to make sure he was stable. They brought Carol back to the labor room and a short while later the brought Riley by for a short visit. Carol wasn’t able to hold him but he held her finger and we talked to him.
Riley is breathing on his own as of right now he does have some oxygen only at about 30%. His abgar scores were great! He is pink and beautiful! Keep up all the prayers they seem to be working. I have to say from the Aunt’s point of view all and all it was a pretty good day for Little Riley! He got to have a normal delivery and he didn’t have to have any tubes put down his throat to help him breath. And, when I left he was holding his Mommies hand and he seemed very content.
Carol and Darren are holding up pretty well. Carol was tired and needed to go back to Penn and put her feet up and get some much needed rest but she was torn about leaving Riley. But the unit he is in is amazing and he is getting the best care he could possibility get.
Thanks for your prayers, keep them coming. Riley has some very hard times in front of him but I do believe today was a good day and all of your prayers had something to do with it.
Here is a preview pic. I have more I will load on the site in the morning but incase anyone is checking you can see he is giving you the peace sign. All is good!
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April 3, 2008
To My friends and Family,
Well, it looks like Baby Riley should arrive tomorrow. Carol is going to the University of Penn at 7:30 am and the OB says she is going to admit her and get things started. If you have been reading her Blog she has already started dilating. We are guessing by tomorrow she will be around 5 or 6 centimeters, but that is just us guessing!
With that said, everyone needs to say that extra prayer tonight for Baby Riley.