Tonight!

Tonight at this point we will be going home!!! WAHOO!! Everything is looking great. Mason's labs have come down, his incision looks good, and he is happy! The only thing we are waiting on is in this mornings xray it showed that the PICC line is still in too far so we are waiting for IV team to come and pull it back a little farther then stitch it back into place. Last time they did it he screamed because they have to put him on his belly (his PICC line is behind his knee cap) holding that leg up so it had TONS of pressure on his sternum which was just opened up and then when they stitched it into place they didn't give him anything so needless to say there was ALOT of screaming from him. The Nurse Practitioner didn't want that to happen again so she ordered numbing cream and morphine for it. They put the numbing cream on about an hour ago. They said it takes one hour for it to take full affect and it will stay numb for 4 hours so anytime now they will be coming to do that. Then after that we just have to do a little more education with the PICC line and they have to set up home health for us to get the antibiotics and we will be able to go home! Mason is still proving to be such a little fighter, we are so lucky to have him in our family.

Today is Wednesday

Well today is Wednesday, they day I was having wishful thinking that we would get to take Mason back home, but that isn't the plan yet. Mason is doing really good the team said this morning from a cardiology standpoint he is exactly where they want him as far as progress goes. The reason we are still here is he is still on IV Lasix so he has to be able to be on oral Lasix. Also this morning on his daily xray it showed his PICC line is in to far, so they have to sedate him again and pull it back and restich it. Also the level of antibiotics isn't as high in his system as they want it so they have had to go up on the dose and wait until tomorrow to draw another level from his blood to make sure it is where they want it. So the earliest we will get to go home is Friday.

PICC Line

Today Mason got his PICC line put it. It will be so nice to have because he has already had 6 IV's in less than a week because they keep going bad, plus he gets lab draws every morning so with this it means NO MORE POKES!! YAY! His labs are still elevated and his lungs are still wet so we might end up being here longer than Wednesday. He is still on IV diuretics and will be until his lungs start to clear then he has to be able to keep them clear with oral Lasix. They think he is so funny because he is so feisty! He always lets them know how he is feeling weather happy or mad! Other than that we are still just hanging out doing the same old stuff! I'll update again when we know more but for now I hope you all have a Happy Valentines day!

Surgery Update

Mason's surgery went pretty good last night. It took about 2 hours, they had t0 completely re-open his chest and cleaned him out with 2 liters of antibiotic then vacuumed it all out. Dr. Burch felt good about how it went and that they got all the infection out. The Dr said they only get about 4-5 sternal infections a year so Lucky Mason! Although I'm grateful it wasn't some other things these Hypoplast Left heart babies could go through. They were pretty worried he would be sepsis but so far so good on that. He stayed the night in the CICU but is now back on surgical. He has a high fever still so they are watching that. We will hopefully come home Wednesday or Thursday. He will come home with a Picc (sp?) Line for 6 weeks of antibiotics so I will get to learn another new thing!

Back to Surgery

Well Mason is going back into surgery late this afternoon. This morning on rounds Dr.Burch (the surgeon) decided Mason's incision looked a little more red and puffy so he dedided to lance a little of it open and when he did it was full of puss, so needless to say he is full of infection! I'm relieved to know that they found the source but pretty nervous for him to have to be opened back up and cleaned out. His hematicrit is also low so he was recieve another blood transfussion. He has been going along perfectly after surgerys so I guess a little hiccup is expected now and again. He is still such a fighter though, he still finds the strength to smile for a min and show his sweet personality!

Home and Back again!

Quick update:
Mason got to go home on Sunday... YAY!!! But he just got admitted again last night (Wednesday). We took him to the pediatricians office on Wednesday because he was really fussy and had a temp of 102. There was no obvious reason for it so they drew his blood and his white count had gone from 8,00 to 20,000 and his CRP was really high (they didn't tell me the value) So we came as a direct admit to PCMC. This morning his CRP had doubled from yesterday and he has been on antibiotics since 10:30 last night. All the viral tests have come back negative and he had a echo and his heart looks great! So now it is just trying to figure out what is causing all of this. If it's something minor we could hopefully go home as early as sunday but we also have the potential of being here for at least a month. We are hoping for the Sunday date! :) Zac has to leave so I will try to get an update in tomorrow when Mason is sleeping in the Parent Resource Center. Thanks for all the thoughts and prayers! And HAPPY CONGENITAL HEART DEFECT WEEK!!! :)

Mason's First Wagon Ride

Well we are all going a little stir crazy I think including Mason. He is either in his crib or I am holding him in the rocking chair right next to his crib so not much to look at! He hasn't been sleeping at all but is so tired so I asked his nurse if we could unhook him and go to the window right outside his door and she said they could hook him up to a portable monitor and they could get a wagon and we could go on a walk! So we did, it was so nice! Mason loved it and it actually put him to sleep and he slept for a whole hour! He is still throwing up but not as bad so the plan is for us to go home TOMORROW!!! :) :) He has lost weight and doesn't quite weigh 10 lbs anymore. He weighs 9.8lbs. The nurses and techs just love Mason and love to come in a talk to him, (when he is not grumpy that is!) There isn't much more to update today just hanging out! Here are some pictures off of my cell phone of Mason's First Wagon Ride!

Another Day

Well just another day on the Surgical Unit. I wish I could say it has been uneventful but I would be lying a little bit. Mason knows what he wants and thats what he is going to get! I love that he has a strong personality already but not so much when the only person he will eat for is me. They tried so hard to let me get some sleep last night but he did not want anything to do with them, and as soon as I would hold him he'd stop and eat, Already a Mamas boy! :) He was really fussy all night only sleeping 30 min to and hour at a time so it was kinda a sleepless night and then today he is throwing up a lot. They are not sure why yet but he seems kinda miserable. But it is just a very minor issue at this point. If everything keeps going as planned we are looking a getting discharged Sunday or Monday! So cross your fingers! They still call Mason an "All Star" That's how they referred to him last time and he is still the little All Star! I can't wait to get home on my Computer and upload all the pictures, you guys better be ready for a picture overload!


(I was able to take this pic with my phone in a happy moment of the day!)

One Step Closer!

This afternoon Mason was moved from the CICU to the Surgical Unit, one step closer to going home!!! This morning he had a echo and that was the final step before moving him up here. The echo showed that his heart isn't pumping as strong as his pre-op echo but it isn't at an alarming level either, so he will have another echo in clinic after he is discharged. A reason for that is he has had high blood pressure post-op and they said they think that could have caused it so they bumped up his blood pressure medicine and are hoping that will do the trick to get it back where it was before. When we came in he was on 3/4 of a liter of oxygen and now he is only at 1/2! They wont try to ween him for awhile because the oxygen is good for them so it will probably be a month or so until they have us start to ween him off. He is starting to wake up a little more, he still is kinda out of it and hasn't smiled yet but every time he wakes up I see a little more of his personality starting to come back. Now that he is here we are no longer staying at the Ronald McDonald because we can sleep right in his room. His nurse tonight is so dang nice her name is Kellee and she can tell how exhausted I am so she told me when I go to bed to sleep and when Mason wakes up to eat keep sleeping and she will come in and feed him! I took her up on that offer and I actually just got Mason back to sleep so I am going to go ahead and do the same! Zac went back to Logan to go to school tomorrow but he left me his computer so I'll update again tomorrow!

Today

Sorry I didn't update yesterday. Mason got taken off the ventilator late Monday night and has done great without it. They still have him pretty sedated so all he does is sleep. He hasn't woke up yet, he opened his eyes once for a few seconds is all but his vitals are good and they figured out his meds. They decided he has a really hard time coming off of the anesthetic from surgery because he did a similar thing as when he was out of his heart cath in the picu. He screams and screams but isn't awake and nothing calms him down so his blood pressure shoots through the roof and his oxygen levels do just the opposite. They maxed him out on off the pain meds and sedation meds that they could and he was STILL screaming so the attending suggested maybe trying ativan and totally helped him out so much! They told us he would probably go to the floor today but his blood pressure is higher than they want it again and his lungs are full of fluid so they are keeping him in the PICU and we will see what happens tomorrow. They increased his Lasix and added another diarrhetic to see if that will help with the water retention that his making him so swollen and also help with the wet lungs. He still has all his chest tubes and we still haven't held him yet but we sing to him and hold his hand. We seriously love all of the employees in the PICU they are so amazing and so good to Mason and us. So he is still doing good just still on the recovery road. So we are really excited for tonight though at the Ronald McDonald house they have a bulletin board of events and what not and there is a flyer saying somebody donated tickets to one of the suites at Energy Solutions for the Jazz game tonight so we are going to the Jazz game in a suit! We are so EXCITED! Zac has never been to one so what better way to go to your first Jazz game than in a suite! People are so generous and it seriously makes you want to help out also. Someday I am hoping we will be able to give back to these places that have helped our family out so much! I wont update again tonight but Ill try really hard to update again tomorrow.

Quote from a friend

I have so many people tell me how strong we are and they'd never be able to do it. Well my good friend Kaydi sent me this and to me it's very true. Thank you Kaydi you know what it feels like to stay strong also!
"You never know how strong you are until being strong is the only choice you have"

Long Day!

Well after 7 1/2 hours Mason is out of surgery!! Nothing went wrong it just took longer to get through scar tissue and to stop bleeding after. He is doing pretty good. They are trying to figure out his meds because he isn't responding to some of them but just before we left they were trying a new one for pain and it was seeming to work. He is still has a breathing tube but we are hoping by the time we get back he will have passed his trial breathing on his own and it will be out! We got a room at the Ronald McDonald house and it seems to be a good place from the tour. He's still being such a fighter! So there is a quick update, I'll update again tomorrow night. HAPPY 4 MONTH BIRTHDAY tomorrow Mason! :) Thank you everyone for your thoughts, prayers, and those who have been fasting.

Surgery Day

Just trying to pass the time! Mason went back to surgery at 7:30am and they told us the surgery would be 5 1/2-6 hours and we wouldn't be able to see him for 7 hours so we are sitting in the waiting room watching time tick VERY slowly. We got our first update a little over an hour ago saying they had just made the incision and they would update us again in an hour so we are not so patiently waiting (although I really do try to be patient). We had to be down here by 9:30 yesterday morning for his pre-op work up. (Labs, Xrays, Physical). So we decided to get a hotel and stay the night because we had to be at the hospital at 6 this morning. It was nice to be out of the house as a family although we were still confined to the hotel room at least it was a change of scenery. I can't wait to get through this stage and have RSV season over so all of our friends and family can get to know Mason and his cute personality! I will try and update after his surgery today but I might not get a chance until tomorrow. Thanks for checking the blog!

How I am feeling

I read this today and it basically sums up how I feel most of the time, especially right now.

You passed me in the shopping mall... (You read my faded tee) You tapped me on the shoulder... Then asked..."What's a CHD?" I could quote terminology... There's stats that I could give... But I would rather share with you... A mother's perspective. What is it like to have a child with a CHD? It’s Lasix,aspirin,Captopril… It’s wondering…Lord what’s your will?… It’s monitors and oxygen tanks… It’s a constant reminder to always give thanks… It’s feeding tubes, calories, needed weight gain… It’s the drama of eating…and yes it’s insane! It’s the first time I held him…(I’d waited so long) It’s knowing that I need to help him grow strong… It’s making a hospital home for awhile… It’s seeing my reward in every smile. It’s checking his sats as the feeding pump’s beeping… It’s knowing that there is just no time for sleeping… It’s caths, x-rays and boo boos to kiss… It’s normalcy I sometimes miss… It’s asking do his nails look blue? It’s cringing inside at what he’s been through. It’s dozens of calls to his pediatrician… (She knows me by name…I’m a mom on a mission) It’s winters homebound…and hand sanitizer… It’s knowing this journey has made me much wiser. It’s watching him sleeping… his breathing is steady… It’s surgery day and I’ll never be ready. It’s handing him over…( I’m still not prepared…) It’s knowing that his heart must be repaired… It’s waiting for news on that long stressful day… It’s …praying…it’s hoping…that he’ll be okay. It’s the wonderful friends with whom I’ve connected… It’s the bond that we share…it was so unexpected… It’s that long faded scar down my child’s small chest… It’s touching it gently and knowing we’re blessed… It’s watching him chasing a small butterfly… It’s the moment I realized I’ve stopped asking why? It’s the snowflakes that fall on a cold winter’s day… (They remind me of those who aren’t with us today) It’s a brave little boy who loved Thomas the train… Or a special heart bear…or a frog in the rain…. It’s the need to remember we’re all in this plight…. It’s their lives that remind us we still need to fight! It’s in pushing ahead amidst every sorrow… It is finding the strength to have hope for tomorrow..
--Stephanie Husted

Discharged!

We are home! YAY! Mason decided to snap out of whatever he was going through and they let us come home! He was scheduled to have his Glenn on February 28th but with that other narrowing and them having to stint his shunt they have bumped it up to January 31. That is typically the youngest they do the Glenn but hey we will take it! He is on oxygen all the time and holding up really well. Ryder's birthday is coming up next week so we are just trying to get stuff ready to have a Ryder day, so I more than likley wont be updating again until the 31st! Thanks for everyone who is following Mason's progress. I really want the awareness for Congenitive Heart Defects to be more and this is really the only way I know how to help that so thank you for reading! :)

Happy New Years/Heart Cath

I have been a slacker updating lately so I will try to get you up to date. I will start with New Years. On New Years eve we took Mason to the ER because he was having some episodes of dropping his oxygen. While we were there he dropped and wouldn't bring it back up so they decided to admit him. He was admitted a little after midnight so HAPPY NEW YEAR!!! They kept him for a few nights to observe him and decided that he just had a small common cold, scary that such a small thing would affect him in such a negative way, but they had prepared us for things like that. Fast forward to today:
Today was Mason's Heart Cath. He was first case so we had to be down here by 6am. His cath was at 7:30am and they told us it would be around 3-4 hours long. His lasted 3 hours. When they got inside to look at the heart they checked his lung pressures and that was a concern they had was they were expecting his lung pressures to be really high and with that it would mean that his next surgery would be really high risk or the pressures would be so high that they wouldn't be able to do the Glenn(2nd surgery) and he would have to go straight to the transplant list. So good news his lung pressures were perfect! Wahoo!! But when they got in his shunt in his heart was narrowing and when they would go next to it his oxygen and blood pressure dropped extremely so they had to make a quick decision and put a stint in the shunt. There was also a narrowing in front of it but they decided to leave it because it would either help a lot or could have caused fatal results. Normally the heart cath is out patient, they had told us they were going to keep him over night where we don't live here but we would just go to surgical. He wasn't very stable after so we are in the CICU. For the first few hours they couldn't get his oxygen above 60 percent and he just wasn't coming off everything very well. He was very irritated which doesn't help that shunt either. They are worried about the other narrowing and his oxygen levels so now it is a debate on if they can hold off 2 weeks so he can gain a little more weight for the Glenn or if they need to do it this week. The earliest they usually do it is 4 months old so he wouldn't quite be that old yet, plus he is still super tiny for his age. He only weighs a little over 9 lbs. He just had a blood transfusion and there is another one on hold depending on how he is acting tonight. They will watch all his vitals and his pulses and then we should find out in the morning the plan for what will happen. Thanks for your thoughts and prayers and I will keep everyone updated as much as I can!

MERRY CHRISTMAS!!!

I'm positive this will be the most precious Christmas we will ever have! Mason has been the best thing that has ever happened to our family. He really made us see what is most important in life and really brought us closer to eachother. It has also made us realize how many people care about our family and and many true friends we really have. Everyone has been so great and giving to our family. It's nice because I am the type that usually wont ask for help but we haven't needed to, people just keep on giving. We are so overwhelemed with the generosity towards our family. We hope EVERYONE has a MERRY MERRY CHRISTMAS!!!

Mason has been dropping is oxygen levels when he sleep so yesterday his Dr. decided to try some blowby when he is sleeping and drops. The first time when he dropped last night it worked like magic, the second time however not at all. So today it was decided to have him be on a nasal canula at night as long as it isn't making his saturations go above 85%. Also at the doctor today he decided to order some physical therapy because his neck isn't as strong as it should be and he only will turn it one way so we have our first physical therapy appointment today. Other than that he is growing like a Champ! He will be 12 weeks tomorrow and he weighs 8lb 8oz, still tiny for his age but growing just as much as they want him to. :)

THANK YOU a MILLION TIMES!!!

I am positive Zac has the BEST teachers and peers at school!! They had a lunch Monday-Thursday this week to raise money for baby M. It was one of those unexpected but touching gestures!! When Zac called me after he read his email and told me about it I'm not going to lie, I cried! It is so nice to know how many people want to help out! We want to thank everyone who helped and donated. You have no idea what that means to our family. There was an overwhelming amount donated and it is going to help us out more than anyone will ever realize! SO THANK YOU! THANK YOU! THANK YOU!!

Mason had a doctors appointment on Thursday and is still doing pretty good. The doctor was concerned about a few things but they are the it could be's so until they are the for sures I am trying hard not to stress and get myself down over them. We are looking at in the mid to end of January we will have to go down and he will get a cardiac cath done to look at his heart and check the pressures in his chest, and they will do a sedated Echo. Then a few weeks after that he will have his 2nd open heart surgery called the Glenn. He is still our little fighter and he has so much personality! He is seriously the best baby, he is always smiling and talking. It is so fun! We sure do love him!


This is the poster that was hung around letting people know about the lunches.

Hanging out!

Baby M is still doing good! We're just hanging out at home, and hoping he doesn't get sick somehow with RSV season here. He has an appointment Thursday so we will see how his hearts doing then! :)

Happy 2 months old!!!

Today little M is 2 months old!! Wahoo! He had a cardiology appointment today and is doing pretty good. Now his heart rate is on the low side, go figure! He weighs 7lb 2oz, so still tiny but growing.  I asked them if they had to estimate when his next open heart surgery would be and they are thinking February/March.  But they will have to put him out for a couple of procedures before they do the surgery.  So our lives will continue to stay pretty crazy for awhile. 

Back Home We Go

Well we are going home today! They watched M on telemetry through the night and his heart rate only went in the 200's a couple times.  It is still higher than it has been but they have no explanation why it all of the sudden has changed.  So now he just will be seen more often so they can monitor him very closely.  We just have to keep a very close eye on him to watch for anymore changes, I guess he just needed a night stay in his other home.  Now he's good to go back to our real home! :)

Mobile

I set up blogger for my phone to try to make things easier so here are some pics off my phone. Its a pic of M last night in the bath.

Well We're Back

I guess we can call it here our home away from home. We
are back at the hospital for another stay. This morning my
mom and Z noticed he was breathing kinda funny so I grabbed
the monitor and it was saying his heart rate was in the 180's
so I checked it manually and got 200. He was also retraction
mildly. I called down here and they told us to get down here
to get checked out. When we got here his heart rate was 200
still. They did an EKG and it just said fast heart beat but no other
abnormalities. They've done labs, urine tests, chest and stomach
xrays and they still are trying to figure it out. They admitted him
at least for the night and have him on telemetry to see what they
can figure out. So we will be here at least one night maybe more
depending on what's going on. I'll keep updating but I'm doing
it from my phone so sorry if I don't detail because it's hard to
post on it.

Update!

Thanks for wonderful neighbors who let me use their computers while I don't have one!!! M is still doing really good! When he came home his diet was to eat 50ml every three hours so he'd eat about 10ml and the rest we'd have to put through his feeding tube. Well he was throwing up and pooping like crazy so at his appointment this past Thursday he hadn't gained as much as they wanted to so they changed his diet to 45ml ever 3 hours then in the night have him hooked up to the feeding pump and have it feed him continuous all night, and it has made such a difference he still spits up but it isn't throwing up like it was before. And yesterday he ate for the first time a full 45ml! He did it 3 times yesterday and so far 3 times today and we still have one feeding left so I'm hoping that one will go as good as the last ones have! Everything is still going as planned and he hasn't gotten sick so far! We still have to limit visitors so how we have decided to do that is just no kids over at all until at least after his second surgery and if your kids are sick if you'd wait to come until nobody is sick at your house! We have so much support from everyone and feel so lucky for all the friends and family in our life! We hope everyone has a safe and fun Thanksgiving (and Black Friday ;) ) I will be making my first turkey for our little family and my mom so I hope I don't burn the house down! We are getting a computer on Black Friday and then hopefully get the internet hooked back up that next week so I'll be able to load some cute pics of my little guy!

HOME!!!

We're home!!!! M got discharged Friday evening. Everything is
Going good, just trying to get adjusted to our new life! Is definitely
An adjustment! He isn't strong enough to eat on his own so he has
a feeding tube and pump. He has a home health nurse that will
Come in twice a week and a speech therapist that we will see also.
His nurse came today and he's up to 6lb 13oz! I'm trying
to post this from my cell phone So it's going to just be short and
sweet, hopefully we'll have a computer soon so I can do a better update.

FRIDAY!!!!

The plan is..... TO BE DISCHARGED FRIDAY!!! :) So I'll go back to Monday. Monday was supposed to be his swallow study but whoever took the order forgot to order it, so they didn't have any openings when our nurse called Monday morning so they ordered it for Tuesday. So monday basically we just hung out and took things easy. Monday night he started throwing up about every four hours bright yellow/green bile, and lots of it. They just decided to watch it until after his swallow study Tuesday. So Tuesday was a busy day, he was still throwing up so it was just patience until the study. The study was at 12:50 and he passed! He threw up during the study and that made the speech therapist kinda concerned. Because he passed he was able to start getting food into his belly after nothing in there for 2 weeks! So first they taught me how to place a feeding tube, once that was placed they started out by doing a very low continuous drip through the feeding tube into his belly, he handled that very well and hasn't thrown up since!! So today at 8am they started bolus feeds. They stared by doing 32ml anhour every 2 hours. They did that until 6 tonight and now at 9 they just started doing 5oml an hour every 3 hours. If he tolerates this well then in the morning speech therapy will come and we will start giving him a bottle! If he tolerates all that well and gets up to goal feeds they will send us home FRIDAY! He has to be on high calorie formula called pregestimil and it has to be concentrated to 27 calories. Breastmilk and formula is 20 calories. They do that because they say these heart babies have a really hard time gaining weight then that affects their next surgery and they have a harder time recovering from it. When we go home he will have to be on quarantine. They've told us until at least the second surgery no church, grocery store or anywhere where there will be people. His next surgery we are thinking will be sometime around february or march. We appreciate everyone and hope you will respect that we are going to be very limited on people coming to visit until the next surgery, because we cannot afford to have M get sick because if he gets sick at all in that time period he will have to come back and be hospitalized until he gets better. If you want to help out one way you could is if R will have playdates have him over to play sometimes if your kiddos are not sick so he can maintain somewhat of a normal life because I took him out of preschool/daycare. So I feel bad keeping him inside without kids his age all winter long. We feel we have the best family, friends, neighbors, coworkers, and ward! We are so blessed to have so many people who care about us and have helped us get through this all! I'm going to end this with a heart poem. Thanks to everyone again!

It's a beautiful day up in Heaven. Jesus is rounding up his tiniest angels, to go live on Earth, and be born. One of the sweetest angels says to Jesus, "I don't want to leave, I like it here, and I will miss you." He reassures the scared little angel that everything will be okay, and that he is just going for a visit. he is still not swayed on this idea. So Jesus kneels down, and says, "How about if you leave half of your heart here with me and take the other half with you, will that be okay?" The angel smiles and says, "I guess that will work." But the little angel is still a little scared. he asks, "Will I be okay with only half of my heart?" Jesus replies, "Of course you will, I have other angels there that will help out, and you will be fine." Then Jesus gives the angel more details about his plan. He says, "When you are born, your mommy will be scared, so you have to be strong, and when you feel weak just remember that I have the other half of your heart. Enjoy your time with your family, play and laugh everyday. And when it's time to come back to heaven, I will make your heart whole again. Always remember that you are not broken, just torn between two loves."

Movin' on Up!

We are officially out of the CICU/PICU!! The past two days have been big but good days! So I'll start with Saturday, Saturday they took out his pacer wires, art lines, AV lines, and the last chest tube so WE GOT TO FINALLY HOLD HIM!!! Such a great feeling to finally hold my sweet little baby again! That afternoon the Nurse Practitioner came in his room and said guys we have a problem so we were like oh crap what, and he said "I don't think we can find a reason to keep him down here anymore!" Problem for them because they fell in love with little M but good for us because that means he is doing great and is one step closer to going home! So he is still doing great but in the night he started having withdrawals from all the narcotics he has been on so they had to start him on methadone to help him get over them. Today around 11:30 they moved him to the Children's Surgical Unit. He is awake most the time and just is content as can be. When we got up here they taught us both how to give meds through his feeding tube just in case he has to go home with it. Tomorrow he has to do a swallow study to make sure he can protect his airway when swallowing and if he can then we can start giving him a bottle. It looks like we will be home sooner than anyone ever thought we would be, he has really exceeded everyones expectations down here. We are so proud of him and are so privileged to be his parents! We wouldn't have made it this far with out going insane if it wasn't for everyones support and prayers! I probably won't have a computer again until Wednesday so take it that no news is good news until then!

Great Day!!

Today they extibated him!!! He is breathing 100% on his own and WITHOUT oxygen!! He is such a little trooper! We couldn't ask for a stronger baby! They also took out 2 of the 3 chest tubes. Tomorrow they are hoping to take out the pacer wires and the art lines (sp?) when those come out they will take out the last chest tube and we will be able to HOLD HIM! It has been over a week since we held him last and I am dying to just cuddle him! Him being such a fighter and all the prayers that each of you have said, and the such great staff here is what has gotten him to where he is today! THANK YOU!! :)

Today

Sorry I haven't updated for a few days, we went home Tuesday night to spend some time with R and let him know we still exist so we just got back this afternoon. M has still been doing good, he is having a harder time when he is awake because now that he is awake more and not sedated he is sick of the breathing tube down his throat and fights it so they have been doing some spontaneous trials on the ventilator and he has been doing great. On of the times today though he didn't do very good but he was MAD the whole time so they are thinking he will do better once he is extabated. Today I asked the nurse what exactly he has because we have been told so many names through all this and honestly my brain is still kinda foggy and I have a hard time processing some things but anyways what he has is Hypoplastic Left heart, unbalanced AV canal, Mild Co-arch, small mitrovalve, and two ASD's. Anyways we are still all holding up really well considering. Thanks for all the kind words and prayers that are still being said, it means so much to our family and we are defiantly feeling all the love that is being sent our way.

Some pictures

M had a good night last night and tolerated the chest closure pretty well. The reason the first 24hours after is rough is because it changes the pressure in the chest. They have been really worried about him because he is so much older than the "typical" baby who has the surgery done, because his body was used to the pressure from before then they have had to change it two different times now. They are going to try to start to ween him off the vent tomorrow. They say it could take from 3 days to a week for that to happen. Today they put 2 feeding tubes in. An NG and and NJ. One is for food and the other is for a study drug that we are participating in. Here are some pictures before and after surgery.

The day before surgery

Our family

After surgery. We got rid of the first drainage tube today!!

Our little bright eyes! They are suprised how alert he gets! He will wake up and just look around and be awake for a good hour while on pain meds and sedation! It makes his blood pressure go up but not to a number that they stress about because it goes right back down after he goes to sleep. The white dressing on his chest is because in these pictures his chest is still open and that is what is covering it. Now he just has a long bandaid down his chest so we can actually see his skin now!