Saturday, February 28, 2009

What is sleep?

Gabriel is on hospital time. He forgot that our time is to bed at 9pm and up at 4:30am (when mommy gets him up and ready for Grandma and Grandpa's). Instead he has been up almost all night for the past three nights. Daddy got the privilege of rocking him most of the night last night so I could get some sleep. I was working on empty. I had been up with him the last two nights and up with Gabe when he got home and no naps. Needless to say I was more than a bit grouchy yesterday.

We are hoping to get back on Gabriel time SOON. I am back to work on Monday. It is going to be a very long week!

Thursday, February 26, 2009

at home day 2

Being home is amazing. Gabriel did too much yesterday and is feeling sore today. We tried to keep him calm but he is a "thousand miles a minute" kind of guy, just like his daddy. He is on his stomach right now trying to crawl.

Feeding every three hours again is very rough on me. The dang portagen takes a hour to drain down the feeding tube. Gabriel refuses to eat it, I wouldn't either after smelling it. If the portagen goes down Gabriel's tube too fast then he throws up because it is rough on his stomach. Gabe is trying to switch back to midnights (he went back to work last night) so that is a bit rough.

I am so happy to have my little man home yet so worried about the future. He appears to be doing well. We are trying to isolate him from the world for a while in hope to keep him from getting sick. Working in a school I am so worried that I will bring something home. I will be going back to work Monday, it is going to be pretty rough!

Thank goodness Gabe and I both have amazing families. Both Gabe and I are out of sick time so we have to be beyond careful! Our parents and my aunt will be coming in to help watch Gabriel to make sure he is not out in public getting ill. They will also be there to help with the feedings. We have an at home nurse that started coming over. She will be coming out twice a week weighing Gabriel and checking on his progress. She is going to work with us to make sure he is still gaining weight while we switch over to six feedings (same overall quantity). This will be a little more manageable.

Gabriel has the best color he has ever had but he is sweating more and sleeping more than he ever did before. His breathing does not seem labored and he does not appear to be retaining fluids thank goodness. I still worry about what the cardiologist will say on Thursday. I hate that I wont be able to go because I have to work during the only times that they had open. We will hope and pray that he thinks the medication Gabriel is on will work.

Gabriel is home and that counts for a lot!

Wednesday, February 25, 2009


k all, I know it has been a long time since I last posted pictures. I am going to make up for it now:)
Feb 16th first time without tubes
see how happy Gabe was: he even made a song

oh the drama of being in the hospital
who said wait on tummy time? Gabriel failed to listen. This earned Gabriel the honor of having the sides of the crib put up higher all of the time!
Gabriel was so happy to be tube free on the 17th that he celebrated by pulling the blankets over his head and 'talking' to his dog through them.
Love the little toes!
Good meds make Gabriel do some of the craziest things. He fell asleep with his eyes open and like this.
My boys!
Feb 21 Gabriel is Great spirits. Praying to come home soon!

This is how Gabriel rolls:)
Yup you see it, they wanted blue to flow in his veins. He at least had on a little blue and gold...
@ home today, Gabriel is so happy to be home! (Note- no feeding tube. I have had to replace it almost every feeding, he is pulling them out FAST)
Gabriel found his feet right before surgery, this is his new trick:)

Thank you ALL video
Sorry it is so dark

Tuesday, February 24, 2009


We are finally home. Gabriel is not completely out of the woods but he is far enough to allow us to come home and be monitored by his physician and his cardiologist. I will post pictures when I have a chance. We made sure Gabriel had medicine on board before our three hour drive home. The last 40 minutes were the WORST, his pain broke through the medication, but he is home now! I will post pictures tonight or tomorrow.

Monday, February 23, 2009

almost full jig style

They are looking at releasing us tomorrow. Gabriel has to pass one last x-ray tomorrow morning. Then we are OUT of here! We will wait on the jig until tomorrow after the x-ray results. Thank you ALL!!!!

doing a moderate happy dance

We are doing a moderate happy dance right now. Official results on the echo are looking good. Regurgitation is down from very severe to moderate. The results will be given to our surgeon Dr. Bove when he is out of surgery and we will see what the next step is. This is helping the pressure go down in his lung as well. We are saving the complete happy dance until after the surgeon weighs in. Will keep you updated!

Sunday, February 22, 2009

another good day

Gabriel went for a x-ray this morning to see if they could take his chest tube out. From what the doctor found all was clear. The chest tube came out around 11am. By 12:30 Gabriel was laying in a large wet spot of chylis. Everyone's hearts stopped for a little bit. They placed another bandage on him and have been watching him closely. He is not having any trouble breathing like last time. He has been in pretty good spirits. We have our fingers crossed for his x-ray tomorrow. We are hoping that the chylis that is left is being absorbed and he wont have to have another chest tube.

They are trying to get him into his next echo first thing tomorrow. So around noon.

Tomorrow is the BIG day. We will find out if the Viagra is working and if the chest tube gets to stay out.

Sorry I am going to cut this short. I haven't been able to really hold him in days and hated to set him down to type this.

Saturday, February 21, 2009

6 months old

Things around here have been calm. Grandma sat with Gabriel for his 6 month birthday. She bought him a monkey and a balloon. Mommy and daddy went home and got some things done including getting a little shut-eye.

This morning Gabriel had a x-ray. No more pnumo! The chylis has stopped coming out of his chest tube. He has been off suction for 24 hours. They are waiting until tomorrow to take the tube out because they do NOT want to have to put another one back in. We are hoping that this time they can get it out with out getting air in. We will see.

Gabriel will have another x-ray monday or Tuesday to make sure there isnt any problems brewing in his lungs. His echo is Monday. We are crossing our fingers. Gabe and I are refreshed and optomistic. Gabriel is bound to have some good luck here about now.

I picked up Gabriel's 6 month pictures. HOW CUTE!! We have one of his Michigan State pictures hanging up on his bed for all of the U of M staff:). We have know most of the staff on this floor by name at this point so we figured they wouldn't treat Gabriel any worse if they knew his mother and her side of the family are HUGE state fans:)

Thank you all for your well wishes.

Thursday, February 19, 2009


Gabriel had a x-ray this morning. The air pocket and liquid in his lungs are looking better. He will have another x-ray in a few days to make sure things are still going in the correct direction. There has been a LOT of drainage. We will not be leaving until it is significantly less, once the tube is removed he will be able to leave within 24-48 hours (depending on a much larger factor).

However, Gabriel also went for his echo today to see if the chest tube helped release pressure in his right lung and got his right valve working. The chest tube reduced pressure a very little bit. The pressure is still more than enough to alarm the doctors and surgeon. They put Gabriel on medication today to see if they can help control the pressure and get the valve working correctly. They will do a repeat echo in a few days to see if the medication is working. If it is not making a significant difference by then we will be heading to surgery. We guess the surgeon wasn't lying when he said they were going to be treating this problem aggressively and that we would know by the end of the weekend if Gabriel would be heading to surgery.

On a funny side note the medication Gabriel is on has a medical name that I can not remember but it is known on the street as VIAGRA. Yup, they put my little one on Viagra to get his little heart going. Daddy is having a field day with this news.

We realize it is going to be a bit before we get to go home. My mother is coming out and going to sit with Gabriel for the day tomorrow so that we can go home, get the bills, shower, get different clothing, and just get away for a moment. Tomorrow is the 20th, Gabriel's 6 month birthday, we had been hoping to be home by then. We chose to go home tomorrow because it is a waiting day. Gabriel is not to have any tests or anything new. We will have to bring something fun back. I will get to pick up his fun pictures from the picture place though:) SO excited!!!!

I will have to post some more pictures. Though all of this Gabriel is holding up pretty well. He is such an amazing little man!

Wednesday, February 18, 2009

Tough Day

Well the x-ray last night showed no signs of the air in his chest getting worse, to bad I can not say the same for the one they did this morning. They said it was "significantly worse" than before. They decided to put another chest tube in to remove the air and fluid in his lungs. The surgeon is hoping that this will lower the pressure enough to lower the severe regurgitation he is having in his right heart valve. They will not release him until that changes. If this does not work then they will try some medicine and if that doesn't work then they will do another heart surgery to fix the valve.
They will do an echo cardiogram tomorrow to see if the pressure has been relieved and if the valve is working better. We are just taking it day to day, we actually expected just about everything that has happened to happen.
Thanks for all of your support and kind words.

Tuesday, February 17, 2009

another set back

We wont be leaving the hospital today. Gabriel went down for his release x-ray, we kind of knew there was something wrong when it took so long for them to come in to talk to us. Then when the doctor on duty came in she had a pretty upset look on her face. Gabriel has air between his chest wall and his lungs. This problem is called pneumothorax. The doctor said that Gabriel has a pretty large air pocket. We hope to see the x-ray shortly. To treat this they are putting Gabriel on oxygen to try to "push" the air pocket out. They will take another x-ray tomorrow to see if there is any improvement then make a judgment on the next step from there. If things look to be improving we may be released but we are trying to not get our hope up because it is too hard to be told he can't come home or that there is something else wrong.

Monday, February 16, 2009

Good and Bad news

Bad news - Gabriel had a ultrasound of his heart today. He is having severe-very severe leakage between the valves. This will not require him to go back into surgery right now but it is going to have to be watched CLOSE! Therefore we will be having very regular doctor appointments still. We have to watch for all of the same signs we had to watch for before his surgery of congestive heart failure. They are not sure if it will get better or worse. We have a thousand questions but the doctor that told us about the ultrasound did not know any of the answers. We were assured that this will not prolong his stay here but may require more surgery down the road. Gabe and I don't do so well with unanswered questions. Unanswered questions on top of lack of sleep on top of being in a small room hours on end create VERY CRAZY people.

Still throwing food up. GROSS!

Good news - They believe that they are going to release Gabriel tomorrow. He is going to have a visiting nurse to help make sure he is doing well. We can't wait to be home where we can cuddle our little man for hours on end. Cross your fingers for tomorrow! Everything else came out today. He is not attached to anything except his feeding tube and he came in with that.


and boom goes the dynamite

Don't shoot, I give up

It is late, I am tired so this will be cut short.

Sunday, February 15, 2009

another day

Another day in a small room with people coming in and out. Sharing it with another family is hard as well. Their little girl had heart surgery mid-week last week and is already in the step-down unit and going home tomorrow. Here we wait with no idea when we will get to break out.

Here we sit waiting for Gabriel's chest to stop producing so much fluid. It is kind of like waiting for a pot of water to boil. You know it is going to happen it just seems to take forever when you want it to hurry.

Erin and I are both getting frustrated and trying not to kill each other. Not that we are frustrated with each other, just with the process we are going through. overall though she has been an angel for Gabriel and me! we love her!

Thank you to everyone for all of your support! Here are some photos from today:






Saturday, February 14, 2009

The end is in sight

The end is in sight. Of course nobody here will tell us when we will be allowed to go home but as we get through each day Gabriel is hooked up to less machines. Today the bandages from his two chest tubes that were removed disappeared. He was also taken off of the machine that keeps control of his oxygen level and heart rate. So all he has is his last jumper cables*, chest tube, feeding tube and a line for IV medication. *Jumper cables go to the pacemaker just in case. They come out when the last chest tube comes out.

We were able to take Gabriel for a walk around the hospital. The only equipment we have to take with us at this point is the box that collects the fluids from his chest tube. He loved it so much he fell to sleep pretty fast. He struggled really hard to stay awake though.

Grandma and Grandpa Hubert came up and stayed with Gabriel while we had a nice Valentines day lunch. In that time our little man managed to throw up all over EVERYTHING. Poor kiddo. He doesn't do that much but the new food does not settle very well. Tomorrow we get to give him rice cereal and veggies:) FUN TIMES are on the way!

The only thing keeping us here is the fluid draining out of Gabriel's chest. They just came in and turned the suction off on his chest tube. This will allow them to see how much the body is capable of absorbing.

Official weight... 12lbs 5oz. He came in here at 11lbs 12oz

As we all know, Gabriel LOVES bath time

Look almost everything is GONE!!!

Checking out- we hope it works and security doesnt try to take daddy out:)

Ready to tour the hospital

The happy family!

Gabriel fell asleep looking at himself in the mirror again. He keeps one eye open to make sure he is as cute asleep as he is awake!

Friday, February 13, 2009


We are so excited. With correct medication Gabriel is showing signs of improvement. He smiled today, he does short giggles, he "talked" a little bit, and he rolled on his stomach and wanted to stay there for over two hours! I have attached some pictures of out GOOD day!

We have the same nurse back as last night... Hope things are better tonight. Let me correct that, things WILL be better.

My boys having quality time

Gabriel having his favorite "tummy time" - He MUST be feeling better!

a little grin coming on... mommy almost got it full force

Daddy has been stuck in a little room too long! Run Gabriel Run!

Pull harder... Pull that nasty stuff right off daddy's face!

Daddy and Boogie play time

I missed the laugh... but there is a half smile on this video

Last and honestly least a video I cant delete where Gabe puts his head in the entire thing.


Good news!! Yesterday they finally got to taking him off of the oxygen. His oxygen has been 98-100 without the extra oxygen. They also got around to taking two of his three chest tubes out. They stopped feeding him in the middle of the night so that they could take the tubes out around 9am. They finally got to it around noon. He is one happy little man right now. He was able to sleep on his side. He doesn't seem to mind the pigtail chest tube as much. In fact he slept on it yesterday and last night.

Now comes the frustrating part. He had a very bad nurse last night. It took her over a hour to get around to anything. So all of his medications were at least a hour late. Of course that is too long and Gabriel was crying in pain by the time she got around to anything. He has also been throwing up about 10ml of each feeding. He had some blood or something one time the nurse really wouldn't even look. The doctor this morning was pretty worried and upset that the night nurse hadn't recorded it in his chart. Every time he dry heaves or throws up it hurts him so he cries during the episodes a lot. He is normally such a happy boy that it is hard to see him cry. The day crew are jumping into action and taking care of the things the night nurse was to do. Gabriel has a chemical burn under his neck. The night nurse said she put his cream on it but it does not appear like she did to the day nurse. I will be requesting that she is not Gabriel's nurse again tonight. There is no reason he should be in so much pain!

Gabriel is doing really good. If he wasnt having the drainage from the nicked vein he would most likely be leaving the hospital tonight. But he is here working on getting better which is fine. I would rather we stay until he is well than have to bring him back to a hospital. The three hour drive back here with a sick little one would be VERY hard, Devos is okay but not the ones who have been taking care of him through this. They are still a hour away. There are no other hospitals that have the accomidations to take care of him around us.

Thursday, February 12, 2009

a little better

Things are going okay. Gabriel just got two of his three chest tubes and the IV in his foot out. He is much happier.

Finally last night a nurse came on who realized that Gabriel had slipped through the cracks in his quick move from ICU to step-down (the move happened in less than 7 minutes, from phone call that another more serious patient was coming up to arrival in step-down). He was to be receiving one of the OXY meds and morphine as needed for pain. The Tylenol and Advil were to be extra in case he needed them. Not just Tylenol and Advil as needed for pain. Poor kiddo hurt so badly he would cry himself to sleep and cry in his sleep as we kept demanding some more medication for his pain. He was like that for a good 4 hours:(. He is good now. The nurse saw how bad he was and went demanding something for him as well. The doctors them went ahead and requested the OXY med once every 6 hours for a while and morphine, Tylenol and Advil as needed. This morning he was the most himself we have seen him sense handing him to the nurse Friday morning!

Things are looking good. The nurse said that if he can keep his stats up a hour after the chest tubes were out they would try him off oxygen. Time should be ending shortly. Course with how fast things are around here we will be lucky if it is off by midnight. What can you do besides smile and shake your head. I demanded meds for Gabriel last night and did not get anywhere so we will try things their way for a bit, as long as Gabriel is comfortable, I am okay.

Gabriel is still leaking out his last chest tube. He is taking down the portagen like a champ. Portagen is to taste just awful! When he is hungry I swear he will eat anything. If time and portagen don't work we will go on to the next thing. I have read quite a bit about what is going on and am not as worried. It is all a matter of time and we will find the time.

The hospital allowed Gabe and I to stay in Gabriel's room last night. In fact they showed us a place where one parent could sleep while the other was in Gabriel's room for a little more room (secret information, I don't have the energy to kill you). The RMD house is FULL. We call each day but now that Gabriel is not in the ICU there is even less of a chance of us getting in. What we have going on here right now will work for us. We will make it work. Gabe and Gabriel are napping now. I am going to run down and get some fresh cold and rainy air for a few moments, too much hospital air.

Under construction... will take a moment to get pictures to the right size... Gabe awake to help

Some pictures from this morning. We enjoyed his being awake and responsive so much that I forgot to take pictures. There will be more time today!

Even sleeping Gabriel is trying to be helpful! (sometimes he takes after his daddy)


The hospital gave the kids Valentines gifts. Gabriel got a puppy. He can get his fingers behind the dogs ear. He wakes up and makes faces when I try to put it at the end of the bed so he can sleep better. What am I thinking...


Mommy and Daddy's Sunshine!!!


Wednesday, February 11, 2009

Long day

Well after yesterdays great day we had a minor setback today. Gabriel has chylis which is from the portal vein that runs from the stomach carrying fat to somewhere near the heart. Apparently the vein was nicked during surgery and it is draining into his chest cavity and out his chest tube whenever he eats.

They put him on a special diet that does not contain any fats in the hopes that the vein will repair itself over time. If it works they will know in a couple of days, he will have to be on the diet for 60 days no matter what. If this does not work there will be several steps over the next few days trying to get it to heal on its own. Worst case: he will need to have surgery to put a stitch in the vein to close the cut. Time is going to tell. They can not take the right chest tube out until they are sure he is not leaking into his chest cavity anymore. This could be days or a few weeks. He can not go home until the chest tube is out.

Gabriel had a rough day. He is completely off morphine they are using Tylenol and advil to try to control his pain. Poor kiddo went from being a zombie to being in tears each time he moves. We moved to the step down unit and have to wait FOREVER to even get those meds. It is so hard to see him in so much pain!

We have checked out of the hotel. We are going to figure out how to work this all out. With the step down unit only one person is allowed to sleep in his room. We are thinking Gabe might just switch back to work time and be awake 3rd shift. We don't know yet but we do know that we are NOT leaving him alone. His cry isn't aloud enough to leave him by himself! Off we go to try to get some more meds for Gabriel so he can sleep.

Tuesday, February 10, 2009

Best day ever!

Gabriel had a great night, he was taken off some of his drugs and one of his IV's was removed. He would have been moved to the step down unit but they were full. Instead they moved his bed to #4 which was across the hall. We started feeding him from the bottle, and he is doing great, he wants more and more, hopefully he will not have to have the tube put back down for his feedings.

He is still bleeding from his chest tubes which is what is holding him back at this point. It is partially due to the blockage he had in his right tube. he is still pretty drugged up, but they are hoping they can take him off IV drugs tomorrow.

We got to hold him today and here are some pics!




Monday, February 9, 2009

pre-op/6 month photo shoot

Hey all we wanted to share some pictures with you. We took Gabriel in for pre-surgery/6 month pictures the Saturday before his surgery. We just got the link to view them online. So I made a slide show of my favorites! I hope you enjoy. (Yes Gabriel is in Michigan State gear. We all know that U of M saved his life but State is still better;))


Gabriel was taken off the ventilator about 5 tonight! He is going great so far! He is so happy to have the tube out and he also gets his hands back! He put them directly in his mouth! Here are some pics and vids of the day.