Never in the Safe Zone

I guess once we start feeling like things are going good and we are somewhat "safe" for a minute they decide to worry us about something else. They called us back last week about the random vessel in his heart and they are not concerned about it right now but they didn't mention what they were thinking about Mason's chest xray being more wet, so yesterday on our way to Ryder's soccer I got a phone call from the nurse, she told me that Mason's doctor is very worried Mason has something called Chylothorax (click here for definition). It is fairly rare but pretty serious, but they way it is presenting itself he really feels it might be. The way they are going to find out for sure if that is what it is they are going to switch his formula. The formula he is on right now is a fat malabsorbtion formula so it makes it hard because the only way they can see if that is the problem he needs to be on something that isn't fat free. The dietician will call us today and tell us what formula we need to give him, then we will go down to Primary's 2-3 days after being on the regular formula and they will do a chest xray and if it is even more wet then it will look like we will become part time residents of Primary Childrens once again. I am nervous being so far away from there when they do this trial because if it gets bad enough it could put him in respiratory distress and I really don't want to watch him leave on life flight again. But I guess we will just see how it goes. This is life as we know it. Our life will always be unpredictable and anything can happen at anytime. So I guess it is pretty safe to say we are never really technically in the "safe zone" But we love this little guy more than words can ever express, he is so fun and his personality is the best! I can't imagine life without him, he has made us stronger and continues to teach us life lessons. Thanks to everyone who still checks up on him and still prays for him, we really appretiate it! ♥

Sedated Echo Appointment

♥ Yesterday was Mason's sedated Echo appointment at Primary's and boy was it a LONG day! We checked in at 11:50am and went straight to chest xray to check on that fluid that was there last month and to make sure the increased Lasix got rid of it then we went back to his room in the cardiology clinic to get prepped for his echo. The nurse came in and did his assesment and then called the IV team to put in an IV for his sedation meds. They put them in what they called moderate sedation. Obviously Mason didn't love the IV team but they got his IV without a problem which always makes for a happy mom! Then they took us back to the echo room where they gave him 3 sedatives, Ketamine, Versed, and Nubain. Those knocked Mason right out! The echo lasted about an hour and went very smooth! Mason didn't move the entire time which is great because with him being on those meds before they can develop a tolerance to them so they don't work as well. After it was over we had to go up to the surgery post op for him to wake up. We had to be there until he woke up and could eat something and keep it down. While he was waking up I requested for them to turn off his oxygen and do a trial to see how he held it on his own. They turned it off at 2:25 and at 2:55 when we got discharged from there his oxgen still was good! YAY HE PASSED!!!! After all that we headed back down to cardiology to find out the results of the xray and the echo. I had been nervous all day well actually to be honest I have been nervous since they said the words possible heart failure. They were so behind that we didnt see the doctor for and hour and a half! He started with the echo, NO SIGN OF FAILURE!!! But they saw something they hadn't seen before, they found a small vessel in his heart that is in a place where there isn't supposed to be a vessel, 3 different doctors looked at it and couldn't figure it out so that has got them kind of confused, Mason's cardiologist wasn't there today and he has done a heart cath on Mason so the cardiologist that we saw is going to talk to his doctor about it hopefully today. Then the chest xray.... it was more wet, another confusing thing because he looks good he sounds good and he passed his oxygen so that is another thing he will discuss with Mason's doctor. Everything else was good his EKG was good and they were pleased with the way Mason looks. So all in all it was a very good appointment just now the waiting on the unknown of what's going on. Before I could take Mason off his oxygen they wanted me to do a trial at home this morning and he also passed here! So he is offically off oxygen in the day! YAY! He has been on it for 4 months, and I know that isn't that long compared to other kids like Mason but I'm glad he is strong enough to not have it anymore! Although now I'm a little nervous and he will prob get spot checked alot for the next week. I am so proud of him he continues to be such a little fighter! We love him so much! ♥

First offical Oxygen Free picture!

His goal range is still between 75% and 85% and it was 83% at the end of his trial this morning so just where we want it!

Welcome to Holland

I read this poem for the first time when we were in the hospital with Mason the first time and felt it was so dead on and the more time goes on the more I feel it is true. I've been thinking of one of my good friends who is going through a hard time with her baby right now and this poem kept coming to mind so needless to say I sent it to her and am going to post it on here for me and for all you other moms going through hard times regaurdless of what it is, just remember to stop and look at the things you have been blessed with through the hard times.

WELCOME TO HOLLAND

By Emily Perl Kingsley

I am often asked to describe the experience of raising a child with a disability- to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It’s like this… When you’re going to have a baby, it’s like planning a fabulous vacation trip -to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland.” ” Holland?!?” you say. “What do you mean Holland?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay. The important thing is they haven’t taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It’s just a different place. It’s slower-paced than Italy, less flashy than Italy. But after you’ve been there for a while and you catch your breath, you look around… and you begin to notice that Holland has windmills… and Holland has tulips. Holland even has Rembrandts. But everyone you know is busy coming and going from Italy…and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say “Yes, that’s where I was supposed to go. That’s what I had planned.” And the pain of that will never, ever, ever, ever go away… because the loss of that dream is a very, very significant loss. But… if you spend your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely hings …about Holland.

6 Month Milestone!

Mason hit his very exciting 6 month birthday yesterday!! I remember being sad with Ryder when he turned 6 months because he was growing so fast but with Mason I was so excited because that means he is still here, so keep on growing buddy! He is such a sunshine in our life he can make any of us happy at the drop of a hat. His eyes and smile melt my heart every second of everyday! Mason we love you and keep fighting, we are here to fight with you!

WE LOVE YOU MASON BOO BEAR!!

Sitting like a big boy in his Bumpo

Handsome Boy

Brothers!

Holding his toes

Things Mason likes and can do at 6 months old

-He loves his brother still!

-He likes to suck on his fingers

-He is interseted in our dog

-He is a squealer!

-He is very ticklish

-He likes to suck on his toes

-He can hold his head up while on his belly for a few seconds

-He can roll from Belly to Back

-He can roll side to side

-He likes us to do patty cakes with his hands

A little video!

Mason is still doing pretty good, still sweating like crazy but his sedated tests are April 20. We haven't heard from the Race yet but from what I read there were over 500 people there!! WOW! What a huge support we got! I still cannot thank everyone enough who came out and supported us! I think that is the day that made me fall in love with Cache Valley. Here is a video of Mason. His smile is so addicting and his eyes are to DIE for! He loves to squeel all the time and honestly I LOVE it!

Prayers for Xander!

Our heart buddy Xander needs all the prayers he can get right now! Xander is also Hypoplastic Left Heart and is a few months younger than Mason. He is still in that scary stage between the first two surgeries and he has come down with RSV. RSV is really bad in healthy babies and is very deadly for heart babies, especailly with ones with such a special heart like his. He is struggling but trying to fight so hard at Primarys right now and could use all the extra help he can get! We are rooting for you Xander!! We are sending our prayers and heart hugs!

Long Day of Appointments!

First I would like to thank EVERYONE that came to the race on Saturday! There was an AMAZING turn out. I feel so grateful for all of our family, friends, ward members, and strangers that came and supported our little guy! I haven't gotten the official number of people who participated but when I know I will for sure post it!

Today we had a long day of appointments at Primary's. Almost 2 weeks ago Mason had a basic hearing test and didn't pass so we started out our day at 9am in Audiology. They did the ABR, a more advanced hearing test. The instructions they gave me was he needed to be sleep deprived so they told me to put him to bed 3 hours late wake him up 3 hours early don't let him eat until we get there and don't let him sleep on the way down.......... I was thinking in my head, YEAH RIGHT! How am I going to keep my 5 month old awake from 4am to 9 during a 2 hour drive?! Needless to say I put him to bed at around 1030,(3 hours late) woke up at 6(1 hour early) and I tried to be very very intertaining on the way down but yep he fell asleep by the time we got to Brigham City! He only slept 30 mins but I was a little nervous they wouldn't be so happy with me! When we got there he was wide eyed but he was such a good little boy and when I fed him he fell asleep in my arms and they were able to do the test and he PASSED with flying colors! We got done with that at 10:30. His Cardiology appointment wasn't until 1:00 so we had to kill time, luckly/not luckly our good friends are admitted and we hadn't seen them since November so it was SO nice to see them, especailly because the mom really helped me out and kept me strong during the Noorwood, she is such an example to me so I loved seeing her again, and of course cute little Carter! Then also my other good friend had appointments at the U so I was able to see her and her cute belly before she has such a precious baby on Tuesday! (I'm sure you are all interested in the play by play of our day, sorry for that! haha) By the time we were done with all of our visiting it was time for Mason's appointment. He gets a chest x-ray every time so that is where they send us first so by the time we see the Doc he can look at it. First in the room they did his oxygen trial to see if he could come off of his oxygen, he failed so he is still on oxygen. After that the doctor came in and the first thing he told us in his x-ray his lungs were kinda wet and his liver looked enlarged. So he felt his liver and it is enlarged....... He also has been sweating a whole ton. Well those symtoms could be sign of heart failure. But they are hopeful that it is more because his lungs are a little wet. So they upped his Lasix to try to really dry him out and our next appointment they we do a sedated echo to look at the heart and see how it is functioning. (His echo after the Glenn showed decreased function) They are hoping upping his Lasix will be the easy quick fix and that is what we are hoping for also! So we will be watching him closely for more signs or if the sweating doesn't get better! The good news of the day is after all of that the PICC line got taken out! YAY!! The first thing I did when we got home is gave him a bath! It has been 2 months since he has had a real bath so I was pretty excited for it and he seemed to like it also!

His Chest Xray from the front

From the side

I took these in radiology of their computer after they took the picture before they put them in the computer and it is hard to see the wetness in these ones but when the doc pulled them up in the room it looked more wet.

Same old Same

So nothing that new going on around here. Just loving every moment together and loving how much more personality Mason gets every day! I am amazed at the little guy how fast his strength is coming! He can now lift his head while on his stomach and yesterday he rolled from his belly to his back then last night from his back to his belly, so I feel he is starting to catch up a little! We are still struggling with the dang PICC line, this week it clotted and it has clotted before but you could still flush it you just couldn't get blood back but this time nothing was going in and nothing was coming out so we had to go spend an hour in infusion therapy to get it worked out. My friend Katy has been so great and helps with Ryder anytime I need it so THANKS Katy! You are the best! Tomorrow is the Braveheart run and we are so honored that they picked our family to raise money for their first annual race! I met some of the cadets tonight and they were all so nice! We are still so grateful for all the hard work they have put into this! Mason has a day full of appointments on Thursday so fingers crossed we will come home oxygen free!

My cute litte St. Patrick's Day boys!

Our Heart Hero!

Once again took advantage of a picture while switching oxygen stickers!

Time is Flying!

Well obviously we have been home for a bit and I haven't posted anything! So where to start?! I guess we will start from when we got home, he is LOVING being home and we LOVE having him home! He came home still on oxygen and with his PICC line, UGH that PICC line might just be the death of me! He has had it for almost a month and still nothing is figured out with it. Home Health is coming almost daily drawing labs to see the antibiotic level in his blood and it is always too low so he is at 190 mg of Vancomycin. It makes me kinda nervous because a side affect of Vancomycin is hearing loss and he is on a lot for a little guy, so needless to say he is going to have a hearing test done on Monday. Also the dang thing has clotted twice! So I cannot wait for that to come out, It gets to come out on the 24th, WAHOO!! He also has had a post op appointment and they did a trial to see if he could go off his oxygen and he failed :( But they will try again on the 24th and fingers crossed we will come home without a PICC line and Oxygen! Up to 3 Ealry Intervention has come in to evaluate him and he is at 5 months on most of his skills and development except his gross motor skills. He is only at the same level as a 2 month old in that section. He is barley starting to lift his head off the ground while on his tummy and he doesn't put any weight on his feet so that puts him behind. But they will have one of their PT's come out and work with him to get him back on track. I cannot belive he is already 5 months old!

Things Mason loves/does:

He weighs 11lb 2oz (still not on the charts but growing!)

He is 23 1/2 inches long (1% yay)

He LOVES his mom! ♥

He thinks his brother is the funniest person ever!

He likes to eat his toes

He is curious about new people

He likes to watch the dog

He LOVES toys!

He smiles at anything, even when he is crying

He brings so much love into our home!

We love you Mason boo!

I had to take advantage of him pulling his oxygen stickers off of his face and get a picture of him oxygenless! :)

He is so happy most of the time!


His smile is contagious!

Time for AWARENESS!!!

AFROTC Det 860 at Utah State is doing a run for Mason on March 19. I am still in shock on how nice people are and how they really want to help! Our little Mason has been a lesson in pride for us. We have had to learn to swallow our pride and let people help. We are so greatful for them in doing this for our family! And so greatful to everyone else who has helped us. The thing I am most excited about this run is AWARENESS!!! I am hoping that somebody somewhere will be helped my Mason's story and cause. So everyone put your walking/running shoes on and come support a great cause! To register go to http://braveheart.regtix.com/

Picture OVERLOAD!

Well the past three weeks have been quite the whirl wind! You got all the updates and I hope you are prepared for all the pictures that went with them..... So here they are a portion of the pictures.....


Mason


Mason and Mommy right before the Glenn


Not much do do waiting in the waiting room for 7 1/2 hours except this :)



Just after surgery



Tube Free



Poseter from Kids Crew


Sleepy boy


The First Wagon Ride




Going Home from the Glenn Procedure


Sick boy....Back again


Mason and Mommy


Mason and Daddy


Waiting to go back into surgery


A few days after being reopened


Our Sweet boy


Big Stretches!





BIG boy!


Home AGAIN! :)

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! :)