Speech

We were all sad when your Pre-School came to a close. Its been more than a month and you still ask to go back. We miss having Ms. Aubrie come to our house and play, and for all of her helpers. You always had a good time, and you were always sure to hang every single art project on the fridge immediately following each and every class. Some day you will love your summer break, but for now, we are missing your friends.

Right before you turned three you were tested again to see if you had made any improvements over the last six months and to see if you qualified for next years early intervention program for three year olds. I was a little nervous for you to be tested. I worried that you would not like the pressure, or the new speech pathologist, I worried that you would fall apart like I find myself doing in these kinds of situations. Fortunately, you didn't seem to realize it was a test at all. The moment you walked into that room you had all the Speech Pathologists laughing. You even were quick to joke around. When it was time to do colors they laid our several blocks. After asking you to find the red one, you started from the far right, and moving to the left, pointing at each block individually, you said " no, no no, no...there it is, I found it!" On a few occasions you got bored and decided playing under the table, it seemed like more fun. Your dad and I could not stop laughing.

During the tests I had very mixed emotions. I couldn't help but be so proud of how well you were doing, I was amazed with your confidence and impressed how well you did on various puzzle, you excelled on sections that we had never worked on before. You really are so bright. But at the same, I worried so much that you may not make it into the program, I worry that I might not be able to help catch you up developmentally on my own like I hope to. When we finally received the results it was amazing to see how far we have come. You had tested less than the 7th percentile in logic months ago, and now you were in the 80th. You fell completely within the normal range for 2 year olds.

After months and months of working with these specialists there are a few things that we have been able to identify, you are not lacking in problem solving or logic in any way. You can speak very well, in fact most people question why you are working with any specialist to begin with. You do however seem to missing one element of communication. Even though you can tell us anything and everything in some way or another, and even though you understand commands reasonably well, you don't seem to be able to understand questions, or understand that you are suppose to respond to them anyways. It is difficult for you to even give your name when asked. No one has quite been able to figure out this disconnect. In most situation you simply repeat the question being asked. I can't help but wonder what long term effects could have come from the trauma your little body may have suffered when you had surgery. Even though you physically are on track, could it have effected your speech or your ability to understand? Is there a coincidence that you seem to be nearly 5-6 months behind most kids your age and you underwent your surgery at nearly 5 months? I guess we will never know. For now we wait. We wait until September 13, 2013 to see if again another 6 months will have made any difference. If no difference has been made, you get to go back to pre-school, which you seem pretty excited about.

The one with heart

Max is your best bud in preschool. Turns out you two both have a Bicuspid Aortic valve and a valve stenosis. That means that your Aortic valve should have three flaps that seal your valve close and yours only has two. Stenosis means narrowing, your valve is smaller than its supposed to be. I know momma doesn't talk about your Bicuspid valve or your stenosis much, its mostly because now that your Ventricular Septal defect, that hole in your heart, was repaired, the doctors don't seem too worried that those defects will interfere with you living a full life. As long as your valve is not leaking and your stenosis does not worsen, you are as healthy as any other two year old out there!

As we are coming to a close this months, and because it is Congenital Heart Defect Awareness month, I find it only appropriate to point out the amazing doctors and medicine that exists today, and to show our gratitude, because with out them you wouldn't be here with us today. And trust me little one, I need you here, no matter how much you make me want to pull my hair out, you bring me more joy that I could have ever imagined.

happy zipper day

I cried today. Not my usual blubbering crying where the words I am saying don't make a lot of sense.  It was a lot like two years ago today. Two years ago when I brought you home from the hospital after your big surgery. Then, I was relieved to have you in my arms again, ready for you to thrive for the first time. Now, its because I don't know that I could have imagined what I was going to miss out on had you not come home with me that day. Now its that you are not only thriving, you are a little person.

You are my toddler that spends all labor day snuggling up to a fake deer. You are  my toddler that is caught shaving his legs with my razor. You live in this world where the only food worth eating is bananas and chicken nuggets, where the hardest part of your day is when you reluctantly put every single juice box away when you are told "no more." You are my toddler that wakes up from naps naked. My toddler that cant resist a dog pile. You cry when I cry, and yell when I yell. You are my toddler that is afraid of the vacuum, my toddler that can't resist sweeping. You spend most of the day in a world where toy whales fly, and toy elephants give kisses. The thought of missing any of these moments makes me even more grateful for today, the day i got to bring you home again.

Little mister, I am looking forward to the many zipper days to come.

Love, momma

Congenital Heart Defect Awareness Week

Did you know that it is Congenital Heart Defect Awareness week? That may be a mouthful but it is a pretty special thing. Its a week dedicated to the awareness of heart conditions just like yours.

"Congenital heart defect" meant nothing to me until 2 years ago. I don't think I had every really considered what it was, or that it could happen to someone so close to me. I was more than half way through my pregnancy and everything was going as planned. I remember the day we got to see your face for the first time. December 2nd. I got choked up, and I think daddy even cried. It was the day that everything became real. You weren't an "it", you were a "he", you were my Gage. I remembering wanting to hold you so badly that I found myself constantly rocking and holding my belly. Daddy would talk to you every night. You were perfect.

I received a DVD in the mail only 2 weeks later with the whole ultrasound. Daddy doesn't know it but I used to watch it when I was home alone. I loved the soothing sound of your heartbeat. There was no reason to think you would come into this world suffering in any way. You can imagine that it came as a surprise to us when they wanted to take you to the NICU for the first time. The nurse had stepped out of our room for the night, daddy hit the lights and we gave you lots of kisses before setting you down to sleep right by my bedside. Sounds perfect, right? Well, we lay there for a few minutes, and I think I checked on you at least 7 times. I may not have known a lot about newborns, but your breathing was even more irregular as the day had gone on, it was at its worst, and it seemed hard for you to catch your breath. I thought the Hospital was taking extra precautions when they took you away from us that night, they thought it would be best for you to sleep with more supervision. And that was the start of a very hard week.

Test after test, they still couldn't quite figure out what the problem was. I was anxious to have you in my arms again. I got to visit you every 3 hours around the clock. I fed you, I changed you and then I was asked to leave and sit in a waiting room while you rested. Sure you breathed a little funny but was it really necessary to keep you from me? April 26th is when we finally got the news that you had 2 heart defects. I was handed a piece of paper with some information about your septal defect. What did it all mean? I was looking at gibberish. Your uncle Rocky was in Med school at the time, and you can imagine he was bombarded with questions, we all wanted to better understand the severity of the situation, and if you were going to be okay. It wasn't too much longer that we were finally able to take you home.

I don't think I slept that first night at home.We checked on you constantly. I would get my head really close to your face so that I could feel your breath. We were told there was nothing we could do at that time and that we just needed to love you. Hopefully everything would heal on its own. We sure hoped.

As time moved forward it became hard to be scared of your heart defects, you were so happy. We didn't realize at the time that sleeping as much as you were was a symptom of heart failure. We had no idea that you had started to get so skinny, and that eating should not be that much work. You were easy, and you made motherhood a dream for a young student like myself. So we kept on living. We didn't want to slow down. We took you every where. You were at your first Jazz party the day you came home form the Hospital, a professional football game at 2 weeks, the zoo at 3 weeks. Momma and daddy were even crazy enough to haul you to Costa Rica at 6weeks old. You were portable, and perfect, and were always up for the adventures.

It wasn't until we returned from our ventures and you had a check up that we realized the issues with your heart were more serious that we had realized. That appointment with Dr. Schmidt was suppose to be a well-baby check up. This was the first time daddy couldn't make it to an appointment, so I tried to hold myself together and not over think the reason we were asked to get an x-ray and blood tests. I received a call from the nurse while I was at work only 2 days after. She said that she had scheduled an appointment with the a cardiologist at Primary Children s, and that the x-ray you had had indicated that your heart was enlarged. She tried to console me. Se stayed on the line asking what she could do for me. It was obvious she could sense the tears running down my face.

By your first cardiology appointment it was made clear that you were in heart failure and would need surgery in the future. It was so hard for me to grasp at the time that this was the best thing for you. Your dad on the other hand never questioned it. When he had heard that this was an option he wanted it sooner rather than later, he knew that if we were able to get you the surgery you would be on your way to a healthy life. It makes so much sense now that we are beyond that stage of life, but at the time, the thought made me cringe, it made me ball. I hated having to discuss the details with everyone. I remember trying to keep it secret as to distract myself from thinking about it all together. Being alone was hard. Too bad everyone loved you and everyone wanted to know everything. Weeks leading up to your surgery I was numb to the details. I could spit out all sorts of big words, and your dad could draw fancy pictures. We knew more about the heart and more about congenital heart defects than ever before. It is now a part of all of our lives.

Congenital heart defects are present at birth, and are a common cause of death in newborns. We have been so blessed to know from such an early stage in your life that this would be something that you would be dealing with for the rest of your life. We are even more blessed to be so close to a Primary Children s Hospital, with amazing doctors that care so much about you. Appointment after appointment, the defects seemed to multiply. And even after your surgery they seem to continue to appear. At one point I think we were up to 8 defects in your itty bitty heart? How it is still functioning, we have no idea. I like to think its because you are needed here on Earth for a bigger better purpose. I certainly need you, who else will feed me all their goldfish handfuls at a time? or spend an hour making faces to the ipad to pass the time when I am bored? Who else will insist that we snuggle when I am cranky? And who will laugh at my stories when they are not even funny?

I think it is great that there is a special week dedicated to remembering that congenital heart defects are a scary thing. I appreciate so much all the efforts made to research, education, and better technology, so that babies in the future suffering from Congenital heart defects can grow as big and as strong as you.

one year, plus a little more, post surgery update

We were lucky enough to meet at the Riverton clinic this time. Problem is, in order to get momma and daddy to work on time, your appointment had to be extra early! But you didn't seem to notice it was still dark outside once you got some breakfast in that cute round tummy.

You had the first appointment of the day. I had hoped this would be a good sign, and that they number of minutes we sat in rooms waiting would be less than normal. I was sorta right. And sorta not. The appointment took forever, as always, but not due to waiting rooms.

The problem with appointments at our small Riverton Primary Childrens, is the fact that they dont have the means to sedate your sweet body to sleep in order to do an echo. So instead, they thought that putting on a movie would do the trick. Yes, A movie. Little do they know, my wild child, my 18 month old, can't sit still or pay attention to a movie when a gooey electronic device is circling his chest, and when he is forced to lay down, and he has no treats! You cried enough to make a technician of a pediatric hospital uncomfortable. She called for re-enforcement. At one point we had three people making facing, blowing bubbles, and singing along with sesame street attempting to distract you from the lady rubbing stuff on your chest. At one point they were so desperate to get you tos top fighting, they asked me if i brought your bottle, and why i hadn't given it to you yet. "A bottle? No, he hasn't had a bottle for 6 months!" I wasn't sure if we would get this this appointment after all.

Finally, I asked if i could be of assistance, since watching the professionals be unprofessional in every way wasn't working. I sent our team looking for suckers, after all it was a pediatric ward, this couldn't be too crazy. I then laid on the bed with you and stroked your hair. It took the technician by suprise, but we were desperate weren't we? Running my fingers through your thick hair typically only works when you are tired, but it seemed to help. Eventually you were distracted enough that the technician could start doing her thing. We only ran into problems when your hand rested into that yucky goop on your chest. You weren't having it. The fit started all over. And unfortunately the fit got worse when your dad stood up to comfort you. You love your daddy, and knowing he was in the room made you want to be in his arms more than ever.

We finally got you calmed down again. You slowly started to doze off to the sound of your own heartbeat on the monitor. I was glad when it was over. You hated it, and my arm was beyond numb lying on it for so long.

Then they attempted to do their standard blood pressure test. You were so riled up that the nurse left really concerned with how high our blood pressure was since they had last seen you. She came back 15 minutes later, and said she just had to try again. We found another sucker and she played peek-a-boo with you, and fortunately your pressure was normal after all.

Dr. Mart eventually arrived. He shook momma and daddy's hands and said hello while you played in the corner with your white tiger and brown bear. You then strutted up to that Dr. Mart and insisted on shaking his hand too. It obviously wasn't fair that he shook our hands and not yours. You even said "hi!" with a giant grin.

Everyone seemed super amazed at how healthy and strong you had become, including Dr. Mart. We couldn't be more happy. We were of course were informed in that appointment that your Big hole, you know the VSD, was closed properly. It was looking great. We had a feeling that was the case since we hear this good news every time we meet with these people. He said that your heart tissue should have grown all the way around your device and it is safe and snug, not going anywhere!

Then we heard, "but..." We hate pretty much all sentences that start with "but (long pause)." Turns out the news is not as bad as I had let my mind believe it would it would be. It wandered aimlessly during that long pause. Then the news. You have another little hole, right below your device. It seems to not be affecting your health, but... with the amount of blood rushing in and out of that hole, there is a lot of turbulence and room for bacteria to build up. Infections in the heart are never a good thing. If i thought we hated "but.." i hated "turbulence" and "holes" a lot more. Again, my mind started to wander. But if momma could focus for more than a second or two at a time, she would find out that they are not worried about that hole, and as long as we followed special direction and give you the right kind of antibiotics you were going to be fine. Phew!!!

Not to make matters worse, it turns out you have another small hole somewhere else as well. I know I know, it feels like they are multiplying. Together, these two holes are making that weird "thud" sound or heart murmur. Good news is, we were cleared to go, regardless of the holes, and excused to leave for an entire year with NO appointments!!! It may have been a rough appointment for a tired baby, but the good news is, it was worth every second. It feels good to hear it from somone other than your dad that you are perfect!

Stats

Weight 25.5 lbs
Height 31.5 in
Head 18.9 in

You like to stay right in that high 60th-70th percentile. At your 15 month appointment we got lots of new stats, one of which said you were 15.3M of Age. I laughed, it kinda reminded me of your Grandma who insists on using months for a more accurate description of your age. I can't blame her, I used to do the same. I have never been good at keeping track of dates, whether significant in nature or not. I even have a tendency to lose track of mine and daddy's wedding anniversary. Sad huh? So when it came to you, my precious firstborn, I was determined to be better. When you were 9.75 months old, and yes I meant to tag that .75 on there, your auntie referred to you as 10 months. I felt like she was cutting you short of your 9th month. I wanted you to be 9 months forever. This happened again and again and again. 

By the time you turned one I was done with months, and transitioned to "he just turned one." I used this for as long as I could. I liked the sound of it, and I felt like I was keeping you young in a way. But, now that you are an experienced one year old it doesn't seem seem fair to say you are newly one, but your not quite one and a half either. Predicament. So after hashing it out, I decided to stick with "he turned one in April." If the people asking choose to do the math they can, if not, that's fine too. Your Grandma will always do the math, and she will never cut you short of any of your months of age, I promise!

So, at 15 months, you have become a picky eater, and by picky, I mean you spit out your first tomato a week ago and rubbed your tongue with your finger. I was starting to think you never actually tasted the food, you have always eaten everything. You love fruit of all kinds and other than lunch, you still seem to be a bottomless pit.

You have 6 teeth, 4 o them sprouted at the same time, and surprisingly they didn't seem to bug you much. It makes nibbling on graham crackers easier, but you still refuse to chew as you shove handfuls of anything and everything in your mouth.

You are trying to run these days. And when you are not running you are walking on your tip toes. Your dad thinks you are working out your calves.

You love to help me get ready in the morning, you even know that my mascara goes on my eyes, sometimes you think dad needs mascara too.

You are totally off your bottle, I know, about time huh? Separation anxiety has a tendency to make nap time scary,like we wont come back for a week or something.

You love shoes, both yours and mine, and throw mini fits if you can't figure out how to put your shoe on yourself.

You are also into headbutting. It started when I would kiss your forehead. Now when I ask for kisses you coming running and slam for forehead toward my face, I have gotten a few bloody lips, and one bloody nose. Now you just headbutt when you are upset. Yesterday you got a bruise for repeatedly hitting your head against the kitchen cabinets.

You love anything cars, big or small. I find them in my fridge, cabinets, hiding behind my trash can, in my makeup, and in the toilet. Fortunately we have a lot of them.

You like to feed yourself. However, you don't have much of a patience for using utensils on your own. So instead you hold a spoon and one hand and shovel with the other. You like dipping food best. Your food always finds a way into daddy's drink.

You are so smart and like to figure out however thing works. The other day you brought a dvd case to us, when daddy finally gave you the dvd you ran to the dvd player and attempting to stick it in. You have a tendency to lose track of time opening and shutting it.

You are still sleeping 12hr a night, we absolutely love it!

You are still not talking much on your own. You can make lots animal noises, and you can repeat a few words, but you prefer Chinese most when we are not helping you, Mandarin maybe? I just so happen to know a cousin of yours, that you hang out with regularly, is studying Mandarin. Currently your vocab consists of the following:

• Uh-Oh
• Owie
• Okay
  
• Dad
  
• Vroom (car noises, a lot of car noises!)

Everyone you are around seems to think you can also say their names if they try hard enough to teach them to you, if this is the case, I would like you to call me mom.

You are so so busy. You always seem to have an agenda. We are loving this age. I would be okay if you didn't grow anymore.

@ 5 months, 3 weeks and a few hours later

Today we celebrate your 6 month zipper day! That is a bit of an over-statement considering your zipper is slowly disappearing, and to be completely honest, it was never very big to begin with! But we are happy none the less. You are stronger, chunkier, and happier than ever. See here, you even started to eat big boy food...

Last week, you had another appointment with some fancy doctors up at Primary Children’s. Every time we have appointments at Primary Childrens, the déjà-vu kicks in. We have to wake you up early, which I hate, and make you take some pedialyte, which you love. We then attempt to enjoy every last second at home, distracting you from the obvious hunger that is kicking in.

As always we jump into our white corolla. Daddy takes my hand immediately and holds it the entire way there. Maybe his intentions are to ease my oncoming fear, maybe it’s just habit. It helps. And I spend most of the drive with my head cocked backwards gazing at your cute face. We never say much. I think we all know there is not a lot to be said. No reason to question why, doesn’t make sense to dwell on the outcome quite yet. Deep down I think we both sit there quietly focused on our family. Our cute family. Hoping the best news for our little one.

Every time, without doubt, dad will turn a light too early. Get used to U-turns little one. There are a lot of them in this family! Maybe daddy is eager to get out of the car, or maybe his memory is really failing him, but he will always turn too early, and daddy will always have to turn around. When we get there, and as always, you seemed so relieved to be out of the car.

Today you were scheduled to get an echo, you know, the test that looks closely at your heart, the one that uses all that goo on your chest. Yeah, the one that leaves you all sticky for the remainder of the day. Thats the one. It also makes sure that the hole is your heart is completely sealed off and that the blood is flowing where it’s supposed to. But, it turns out, and it has been confirmed, even doctors tell me, that you are wiggly one. So this echo they had to sedate you.

After a few preliminary tests, Nurse Practioner Kellie talked to momma and daddy about the medicine that was supposed to help you stay still during the echo. While Kellie talked, you kept yourself pre-occupied by putting handful after handful of paper brochures in your mouth. You were passed hunger, you had hit starvation.

Finally, 4 hours after you had woken up, we were in the echo room. Moments later they had an IV in your hand. You were screaming, yanking on my hair, anything just to make sure I wouldn’t let go of you again, anything to make sure they wouldn’t touch you again. First medicine in the IV, and the crying stopped. Second medicine in the IV, you went straight to loopy. By the third medicine, your eyes were rolling, your laugh was deep, and you were happy as can be.

We laid you back down on the table. Your hands continued to wail around, as if you were playing with a non-existent mobile above your head. Turns out, they couldn’t get a good echo with you playing, so they upped the dosage and you spent the remaining hour of the test gazing into a nurse’s eyes.

When your echo was over, you were taken to recovery. We attempted to give you pedialyte (the last thing in the world you want when you are hungry), but you preferred to do “Triple sow-cows,” as Nurse Practioner Kellie called it. In other words, you were rolling. Your head flinging to-and-fro, arms flailing. You were as high as a kite. When the sedation started to wear off, hunger started to set in, we were finally able to get you to stay still enough to down 4 small bottles.

When all was said and done, Dr. Mart took time out of his busy schedule to talk to us about the results of your echo. Unfortunately, he let us know that there is still a residual hole in the lower chamber, your Ventricular Septal Defect. That Amplatzer is doing a good enough job that you are not showing any signs of heart failure, but the small hole could be the reason you still have another hole, your ASD as well. If those were the only issues, Dr. Mart would feel pretty confident that in time they would close and you wouldn’t know any different.

However, it never seems to work that way does it?

Dr. Mart reminded us of your other heart defects. The combination of your residual holes and your Bicuspid Aortic Valve, you will continue to see those sweet nurses, and good ‘ol Dr. Mart pretty regularly. It’s all right, I think you like him a lot. He is the only Doctor you let listen to your heart without insisting on yanking their Stethoscopes’.

Here are a few pictures of your Amplatzer:

So that thing pluggin' your heart is made of metal. Its heated just perfectly and molded into a specific shape to plug your hole. It's so cool, that it can keep its shape no matter how much you pull and twist. Once its been made, they screw it onto a little stick. They squeeze that stick and the Amplatzer into a teeny catheter and maneuver the catheter through your heart into the right place. Remember that stick, they use it to push the Amplatzer out of the catheter and into the hole. When its in, they simply twist and unscrew the the stick, and voila! Your hole is plugged!

If you look closely, you will see your Amplatzer. It's just hanging out in your heart on the right. And that's not all the metal you have in your little body. On the left your sternum was closed shut with wire. This makes you so cool.

Love, Momma!

@10:47am 3months, 2 weeks, and 1 day post surgery

Little mister. You met with that big fancy doctor, you know, Dr. Mart, the one that comments on daddy's beard every time he sees it, as if its the first time he has seen it. He was checking up on that heart of yours. He wanted to make sure that the titanium piece in your heart was doing what it was supposed to, plugging that big hole of yours.

First they did an x-ray. You hate those. They force you to put those squishy arms of yours above your head. And if that isn't bad, they stretch your legs straight. You cried. They worried. Dad held you. And it was all better. This process repeated a few times. The doctors had a hard time getting a clear image. It turns out you are a wiggler, who knew?!?

Next they tested your blood pressure. Little do the nurses know, my baby doesn't like laying still for long periods of time. The only way to keep you still enough was to blow teeny tiny bubbles in your face. This worked. You ate as many of those bubbles as you could as they floated around the room and settled on your face. In fact, you did so good focusing on the bubbles and not the blood pressure test, that they jumped at the chance to do an ekg right then and there.

Then, my favorite part. They messured how big and strong you have become! You came in at a whopping 20.5lbs. That's 7lbs since surgery! Its good to see you so "thick," excuse my lack for a better word! You are now 28.5 inches long. No more twiggy limbs, instead, lots of rolls all over you body, perfect for nuzzling...oh and occasionally nibbling!

Your heart is still enlarged. For anyone that knows you, that doesn't comes as a surprise, *wink . Dr. Mart says that your heart tissue stretched before surgery. You see, one of the holes in your heart caused the blood to flow incorrectly. Your heart was working so hard just to pump the blood where it was supposed to go, that it became big in the process. Good news little man. They think you will grow into that enlarged heart just fine!

When Dr. Mart used his fancy stethoscope, he could hardly hear that murmur. He thinks the heart tissue is growing around your titanium plug perfectly, sealing off your heart chambers.

Little mister, momma feels so blessed to have doctors like Dr. Mart to care for little babies like you. Modern medicine is an amazing thing. You are a part of that medicine's progression. They don't know how your heart will react to that titanium piece 20 years from now. They don't know if this will be an effective procedure when your 40. They don't know if that titanium will rub against your heart tissue causing problems. Even those miracles workers don't have all the answers.

I want to question. Just hearing this makes momma cringe. What have I put my baby through? What will you have to endure in the long run? I often worry that the decision i made to have this particular procedure will cause harm down the road, and possibly another surgery. But i keep reminding myself that without smart doctors trying new procedures, we wouldn't have heart surgery at all. And without open heart surgery, i may not have my baby with me today. You are a lucky little man. You were number 3 to get this procedure here in Utah. You were the third baby to have a faster open heart surgery, number three to have a quicker healing process, this makes you a part of history.

Yes, you will have to meet with those big fancy doctors for the rest of your life, and yes, you will have to have all those tests run. But I also know that you will continue to grow even bigger, and even stronger. You will get to play all of those fun games, and get into all kinds of trouble. I love the thought of you living a long healthy life. You have always been a fighter, and little mister, momma wants you to keep on fighting!

love, Momma

two week post-surgery check up

dear gage,

your mommy sent me an email today.  she told me some neat things about you and showed me some super neat pictures.  see yourself above?  i especially like the one where you've found your hand and the other showing your awesome tipping-over skills.j

i miss you gage.

i haven't seen you for too long to admit.  soon though.  soon we'll get to hang out.  i hope you'll remember me.

here's a copy of your mommy's email.  i think it's neat that you're getting teeth so you can start eating food that will make your poop smell awesome.  

love,

auntie em

p.s.  gavin said you could have his ollie the octopus rocker for your room.  i think you'll really like it.

The little guy can take a much needed bath again! These sponge baths are not cutting it!!! At his two week check up they took off his bandages. I will make sure to get pics of his teeny tiny scar {posted} soon! The incision is healing perfectly, an his dissolving stiches have almost fully disolved. He had a very long and very thin scar. When i get home from work i will send you of pic of his x-ray too so you can see his device! 

They say he is doing fabulous! They couldn't have imagined a better recovery. He will continue to see a cardiologist, but his next appointment isn't for 3 months! thank goodness! We are getting sick of this place!

He is rolling all over the place again....there have been some instances that he nearly made it off the couch...too close of calls for mommy! He is back to his stubborn self, wanting to do everything the big kids are doing, the only difference is that he vocalizing his wants more than ever. So when he feels let out...you know it! We are excited for the {American Heart Association} walk this weekend! He loves the fresh air!

Sadly he is teething. But on the bright side all the crying is only from teething and not from the pain of his surgery. He is totally off Lortab....which we haven't decided is good or bad, because maybe he needs it for his poor mouth?

Attached are some pics from the other day. Happy as can be!

{p.p.s from auntie: the photo below confused me.  that purple background makes your comb over look like a mohawk!}

xoxo

3rd stop post surgery ~ HOME!

you're home gage!  mommy sent auntie em an email at 10:46 a.m. saying "packed up and ready to go."  what wonderful news!

the doctors told your dear parents that you did really well over night.  they took the stickers off of your little face, the IV out of your hand and the monitors off of your chest and foot. woo hoo!!!! (that's what mommy said).

doctors say that your sternum is still broken and that you will have pain for the next six weeks but not to worry little man because they sent you home with lots of lortab.

i believe that you are amazing little gage.  please pretend that there were a bunch of balloons and all sorts of goodies from auntie em waiting for you at home because in my perfect world, that would be the truth. i love you so much gage and i'll continue to track your healing here until your mommy catches the blogging bug 100% and tells me to sign off. 

please come visit us soon.  i know grandma is going to come and take good care of you for a little while in the comfort of your own home.  enjoy your time with her but as soon as you're able, come back to me so we can play together with all these toys i've found!

until then. ... i'll be thinking about you.

love,

auntie em

sunday morning! ~ post surgery day three

mommy says your white blood cell count is down and your incisions look great!

the dr.'s made the rounds today and decided to keep you on the antibiotics until the end of the day and they say your discharge will most likely be tomorrow! 

they removed your oxygen tubes but once you were given your pain meds and fell asleep, your oxygen levels dropped so they started the oxygen again.  you still can't stand these tubes but mommy says you're super smiley today.  

she says you're grabbing at their faces and still trying to figure out what the IV is in your hand, it's confusing you as you're unable to grab anything with that hand.

you're quite the fighter!! 

xoxoxo

@1:30 p.m. post surgery day two

it was so good to see you today gage.  so good, it was hard to leave.  you were alert by the time we needed to say goodbye.  maybe a bit groggy but, there was definitely a light in your eyes.  and guess what gage?  you pooped!! this was an exciting noise coming from your tiny body.  i know, gross, but seriously such progress in the right direction.

what else?  after your blood draw they decided to start another IV so you could receive some antibiotics as a safety precaution.  your white blood count was just a bit higher than they like to see so, they want to be careful about infection.  you also have a much smaller bandaid over your incision rather than that large patch of gauze.  and ... a sock on your hand! you were perplexed by this.  staring at the sock, trying to grab at it.  mommy said you were scratching your face all up with the IV tape so they put a sock on your little hand.

you're so sweet little buddy.  we brought your cousins up to see you today.  they wanted to hold your hand and make sure you are okay.  you did not disappoint.

as we were leaving your aunt amanda stopped by.  more visitors who love you.

talk to you soon buddy.

xoxoxo

@9:23 a.m. post surgery day two

they've pulled your chest tube and pacer wires out.  yeah and hooray!

mommy says you are still on morphine which makes you really loopy.  but, you're doing great and loopy means less pain so, we'll take it!

thinking about you. happy healing.  here's to day two!

second stop post surgery ~ CSU

you've moved up a floor gage.  this is big news.

around lunchtime today the nurses were happy with how well you were eating and the dr.'s were impressed with how quickly it seems you'll be able to go without the oxygen tubes in your nose.  after seeing you tonight, i've decided the tubes are annoying you.  they would annoy me too.  

earlier this afternoon your mommy said you got a hold of your chest tube and pulled on it very hard.  she said it hurt you really bad and at this point, you were so upset, the nurses let mommy hold you with the hopes that it might calm you down.  they gave you a hit of morphine then too which was something they'd been trying to avoid doing.  they started to reconsider letting you out of the NICU but then around 4:30 you were released and moved up to your own private and much larger room.

these photos aren't the funnest to see.  you're sad.  but, they're part of the reality of today's events.  you were sad at this moment after yanking on your chest tube and mommy was trying to help you relax.  

she wrote to you about this moment:

My dear sweet little mister, momma has been through a roller coaster today! Just about killed me. I am taking Nyquil (suggested by your auntie) just to sleep at night. You were doing so great. Recovery was happening so perfectly. I shouldn’t have expected anything less. You are perfect.

I went to visit you in the ICU right after lunch. Great Grandpa Wright wanted to say hi. He is 92. He told me once that he was ok with dying, he had lived a good life. Then daddy got the courage to ask momma to get married. Great Grandpa Wright said he was going to do everything to stay alive to see me handed away at my wedding. After the wedding, he mentioned it again, he had lived a good life. When Momma had found out her little mister was on his way, Great Grandpa Wright did it again. He had another reason to keep living. He got to see your sweet face. You are a special boy. You are the reason for a lot of people to keep living! You are strong, I mean who wouldn’t be with titanium in their heart!

That’s why it was so hard to see you today. You are my special little mister. And today momma watched you use your little hands and tug at your chest tube (the tube that drains all the yucky liquids from your heart). Pain came all over your face. Your eyes started to swell. Your weeps turned to cries. You hurt. Your voice was hoarse from the ventilating tube down your throat the day before. Your cries were faint, but the pain in your face spoke for itself. It was 2:48pm, they finally let me hold you. Let me hold you in hopes that I could ease your pain. The nurse rested your sweet head into the nook of my arm. I did everything to love you right then and there like I had many times before. Except, today was different. Momma love didn’t seem to be enough

That broke my heart.

The thought that I couldn’t make you feel better. I wasn’t being a good enough momma. I had failed you. You finally needed me after all this time in the hospital, and I couldn’t step up and help you! The nice nurse scrambled around and found some morphine.

2:56pm

8 minutes.

That’s all it took. That’s all it took for me to fall apart. It was the longest 8 minutes I have experienced up to this point in my life. I hate to see my little mister hurt like this. It hurts me. I know I supposed to be the strong one. I know, I’m the momma. I know, you are supposed to look to me for support, love and strength.

I’m sorry!

That shot of morphine calmed you down immediately. Your weeps became faint. My body relaxed. It relaxed until I looked into your eyes. Your eyes were empty. You were looking at me but you didn’t see me. I know you weren’t feeling pain, but seeing you look like that scared momma.

A tear fell.

My little mister was in my arms, but he wasn’t his happy smiling self.

I held you until you fell asleep. Nurses told me that you were well enough to leave the ICU, but having to give you the morphine made them reconsider letting you go tonight. I continued to hold your hand. Several visitors came, and not once was I going to let go of your sweet little hand. Your hand that had been poked and bruised over and over. I was going to make you feel better. I was determined. I sat there through nurse after nurse as they examined you. You are my favorite little mister!

4:36pm

It took me a minute to realize what was going on. A man came to your beside and started packing all of your wires up. He organized your bed. Glanced at me, and nodded. It was time to leave the ICU. You did it! Whatever “it” is. The nurses felt confident that you were doing well and could leave that dark ICU. Little mister, you were on your way to having your own room. My chest has never felt so light. I took a breath like it was it was for the first time in a long time. It felt so good to breathe again

your mommy and daddy are tired gage but, they're strong.  just like you are.

you've had more visitors today and an amazing outpouring of love and support from all over the world.  we're doing our best to keep up with all of the thoughtful gestures being received by others and soon we'll post some photos of you with your visitors.

uncle jake and i came up around dinner time.  this new floor is much nicer gage.  you're hanging out in section "n" which i imagine stands for "noble." walking the halls can best be described as an aquatic experience.  it's a nice change for you, i'm sure and i'm glad.

when we arrived you were sleeping soundly.  you looked sweet and peaceful in your own comfy pj's.  the mobile above your head turns and plays music. classical, lullaby, white noise and something else.  i forget.  at some point you wake up and you look at me.  i think you know who i am and i feel like you're waiting for me to pick you up but i can't.  i don't like that feeling.  

we talked and you held my hand.

you make faces like you might start to cry.  this makes your uncle jake uncomfortable.   like the rest of us, he doesn't like to feel helpless yet, that is exactly what we all are.  i hope it is enough for you to know that at any given moment, if we could, each and every one of us would take your place.

once you fell back to sleep we decided to run and grab your dear parents a snack.  when we returned, you were sad gage.  you were hurting and it was disheartening to see.  the nurses couldn't move fast enough for any of our expectations.   once one of them returned with something to ease your discomfort she made it clear that it was "nasty tasting" stuff.  your mommy was ready to chase it down with your bottle but you took it like a champ.  i stood there watching quietly as this nurse worked magic with her light touch to your brow putting you back into a soft slumber once again.  there have been a few moments over the last two days when i've seen how blessed we really are to have access to these amazing people who spend the better part of their lives working magic and caring selflessly for others.  these amazing people give babies like you a second chance at a long and healthy life.  even though it was really tough to watch you hurting, i feel at ease knowing that we can trust this process and sleep well tonight knowing you're in very good hands.

sweet slumber little mister.

xoxoxo

@ 1:35 p.m. post surgery day one

dear gage,

mommy tells me you're doing really well today.

around 8:50 this morning your mommy and daddy were told you would be needing a blood transfusion because your heart rate was a bit too fast and they needed to stabilize it. they just finished with the transfusion and say you're responding well. they also just took the central line out (the one in your neck).  one more iv to go (the arterial line) and you'll be free to move out of the NICU and up to the third floor.  i hope this is where i'll see you tonight!

mommy says you're eating really well and you're no longer being given morphine, just lortab now.  you're eating so well in fact, there's no need to pump your formula with more calories which means your back on a normal diet and maybe soon you'll get some chubby cheeks.

she also says you're talking a little bit but in a groggy sort of way. the nurses promise her she'll be able to hold you much sooner than later.  she sounded pretty excited over the fact that your blood type is o+ just like hers.  most people go on and on about how much you are like your dad.  us moms need someway to take credit for our dear children.  looks like sharing a blood type will be her credit until your hair turns blonde or until you show less signs of hyper activity.  teehee.

it's great to see that binkie in your mouth!  right where it should be.

xoxoxo

@10:55 p.m. day of surgery

via text message from mommy:

one IV out, a few more to go. he is still on a very small dosage of morphine. he is still on a little oxygen. his color is great for a cardiology patient but, they anticipate that with his new and improved heart he won't be as pasty.  he started eating pedialite tonight and i get to hold him tomorrow!!!

cousin brooklyn wanted to know if the hole in your heart will ever grow back. it was nice to be able to tell her "no."  she loves you gage!

first stop post surgery ~ NICU

we just visited you in the nicu.  no need to beat around the bush gage, it's tough to see you with all these tubes and wires.  your little cheeks are swollen from all the fluid pushed for the anesthesia.  there's a little mark above your lip from the breathing tube.  the tube draining your chest is larger than i expected it would be.  the nurse told me that when they opened up your chest they washed the inside walls really well to ward off infection.  the drain is required to get all that unwanted fluid out of your chest wall. 

i guess they decided earlier that they would only close off the one hole, the larger hole, using the new device and that way they wouldn't have to put you on life support and such things.  supposedly, the idea is the newly closed off hole will allow for better blood flow through your heart which will hopefully help the much smaller hole to close naturally.

your breathing has already slowed to a normal pace.  this is so amazing to me.  just like that, an ailment cured.  of course, the process to overcome this ailment is a bit extreme but still ...

currently they are hoping your skin coloring will improve just a bit.  i guess you're just a little bit pale but we all agree that you've always been just a little fair skinned!

i think your mommy and daddy were relieved to hear that all went well but i can tell it's hard for them to see you this way.  to not be able to pick you up and snuggle you close.  soon enough.

the waiting room around here is gaudy.  i'm glad you don't have to hang out in here.  i guess if i were 5 or 6 years old, i might change my mind.  the clouds painted on the blue wall might not seem so dreary.  maybe i would color with these markers.  

right now you're visiting with your dear parents.

grandpa craig just got here and he's sitting with me in the cloud room watching the disney movie bolt.  you'll like grandpa craig.  he watches disney movies.

a woman from your church came by to bring your mommy and daddy some snacks.  all the way from draper.  isn't that nice?  i think her name is robyn.  i probably got that wrong.

i love you gage.  i'm looking forward to seeing your smiling face.

here's to healing.

xoxoxoxo

@ 2:08 day of surgery

this is what more good news looks like.

this was the much awaited announcement, "all done!"

grandpa takes notes.  he wants to know the name of the device that was just inserted into your little chest.

they say it went really well.  there is still a tiny hole around the device but they are optimistic that it will close up on it's own.

your incision is approximately 5 cm.  for the next day or so you'll have two pacemakers for safety purposes as well as one tube for a drain.  the breathing tube is coming out soon.  this is good news gage, you're so tough.  once the breathing tube is out, they'll move you to NICU for recovery.  

mommy and daddy are anxious to see you.  mommy wants to snuggle with your neck.

hanging in ...

@ 1:29 day of surgery

some hours earlier you arrived and i hear the toys were to your liking.

the lady with green scrubs came by and kindly said "they've made the incisions and so far everything looks great."

we take up an entire wall.  mommy, daddy, grandma linda, grandpa richard, great uncle scott, cousin-of-sorts kristin and me, auntie em.

daddy seriously discusses fantasy football with grandpa richard.  a distraction technique.  maybe it's working.  probably not.

they announced a successful tonsillectomy on the daughter of the woman to the right of us.  her wait is over.

loving you from this colorful room!