Suggestions...

Max's surgery is just 2 weeks away. One of the main things we need to do to prepare him is keep him healthy. No sniffles. No cough. No fever. Anything kind of sickness would delay surgery. The best way to keep him germ free is to stay home most of the time. We kind of feel like hermits but it is only temporary. Today Max and I stayed home from church. We played some games, had a nice lunch and took a nap. 

While Max and I were playing a game of bowling this morning, I realized that I need to start making a list of all the things we need to pack for the hospital... button up jammies, slippers, favorite stuffed animals (and new Build-a-Bear!), all the hearts we are receiving in the mail, his quilt (more on that later), a few of his favorite puzzles and toys... but what else? As for me, I know I should pack comfortable clothes, toiletries, a few books, my journal, camera and battery charger, cell phone charger, snacks, a water bottle...  I know we will get there and realize that we forgot something. Spencer can zip home and bring back anything we forget but what do you think would be important to bring to the hospital? In an odd way it feels like we are going on vacation. We are packing up and planning to be gone for at least a week. So what do we bring? Any suggestions? What do you think would make the hospital stay more comfortable or tolerable? What are some quiet ways to pass the time? What are some calm ways to keep Max occupied once he starts to wake up? I'm open to suggestions!

One thing we have done in preparation for his surgery is cut his hair. He will only be getting sponge baths for 2 weeks and after that, the incision site will not be allowed to be submerged in water for a while. We figured that his long curly hair would get pretty ratty and nasty after laying in a hospital bed for that long so we buzzed his head. No more curls and shaggy hair. He still looks cute though! 

Before...

And after...

Keep sending hearts...

PO Box 67086

Portland , Or 97268

Random acts of kindness...

Last night was kind of a rough night for me. I was not feeling well, I was really short tempered with my boys, Spencer was not home and I let myself get overwhelmed with everything we have coming up in the next few weeks. I try to hold it together and keep a positive perspective but it is hard to not just break down and weep sometimes. I'm a mommy so I am allowed to cry about my baby having a major surgery. 

I ended up not sleeping well. When my emotions let loose it is hard to reel my mind in and find relaxing thoughts. Instead, I end up tossing and turning and eventually sleeping on the couch so mindless late-night television can drown out the stress tumbling around in my mind. I woke up with puffy eyes and a lingering sadness. I knew I needed to shape up my attitude because Spencer is play in a basketball tournament today (sorry we could not be there to cheer you on honey!!!) and I was a solo parent for the day. 

After breakfast and getting dressed, the boys and I got ready to leave. Morgen has a sports camp on Saturday mornings. Opening the door we found a bag. No note. No signature. It was a bag from Build-A-Bear with a gift card inside. I have mentioned to few friends and family members that I really wanted to take M & M to Build-A-Bear before Max went to the hospital. It is difficult to think of ways to making going to the hospital exciting for a child. I though that a new, special stuffed animal would be perfect. Build-A-Bear can be kind of expensive and with all the medical bills we know are coming our way, I hesitated to take our boys. That money could be used for more practical things but because of a thoughtful, generous friend, we can now take our boys to make their own special bear to snuggle with and we won't have to worry that the extra money would break the bank. 

It makes me cry just thinking about how thoughtful this gift was. Our family continues to receives so much support and service. Thank you! We appreciate it so much! Every prayer, every word of encouragement, every little gift, every card in the mail... everything helps. It is the support of each of you that are giving us the strength to get through this.

Please continue to mail in your hearts for Max...

PO Box 67086

Portland, Or 97268

Waiting...

So much of our life with Max has been waiting. Before he was born the doctors told us he would need at least 3 surgeries, the last of which would happen when he was between the age of 3-5. That is a pretty big window of time. We have done our best to live life as normal as we can. We tried to not deny Max anything that another healthy kid could enjoy. Day to day Max is fine. Most people are surprised to find out that he has a major heart condition because he is happy, has energy and does not seem weak or sickly. 

But in the back of our mommy and daddy mind, we have been waiting. Waiting for this surgery. Waiting for Max to make it through this last open heart surgery so that we could stop waiting. We have had to change plans while we waited. We had to schedule vacations and trips around Max's needs, we have had to carefully decided where to live so that we would be a comfortable distance to Max's doctors and hospital, we have planned every detail of our financial savings so that we could afford the expense of this surgery, etc. Most of those things seem minor when you consider the motivation is to do what is best for Max. However, we are excited to see what it feels like on the other end. We are excited to walk out of the hospital and not have another surgery looming over our future. We are excited to stop waiting. We want to just move on and not feel a major road block in the way. I almost feel nervous about adjusting to life without having to wait, it has become a constant companion for me over the past 3 years. The hope is that our family will slowly adjust to living life day to day with nothing but a bright future to look forward to, rather than counting down to a lengthy hospital stay. And more importantly, after all this waiting is over, we will have a healthier, stronger Max who will be able to use his sweet body to a fuller capacity. 

Two weeks from today Max will be at the hospital doing all his pre-op work- chest x-ray, EKG, blood drawn, and meeting with his surgeon. When he was a baby the nurses could not find a vein to draw blood from so they had to use a vein in his head. I had to leave the room during that part. It was quite traumatic to see a needle poking out of my baby's head. I hope this time they will be able to find a vein in his arm!

The Max Report...

A few fun facts about our little pre-op patient...

- Favorite color: green
- Favorite foods: peanut butter sandwiches, hot dogs, Oh's cereal, blueberries, chocolate milk and anything with sugar in it!
- Is in his superhero phase and loves the Hulk, Spiderman, Superman, Batman and Ironman.
- Sleeps with 3 stuffed animals- a puppy, a duck and a monkey. He calls them his puppets.
- He is VERY competitive. He does not like coming in second place at anything and usually will pout or cry if he does not win.
- Loves to play games- Sorry, Candyland, Yahtzee, Chugginton game, Bingo, etc
- Has a hard time pronouncing R's and L's. My favorite is when he asks for a "waw-wee pop" (lollipop)!
- Likes to sneak up on people and then either growl at you or tickle you as a surprise.
- He is obsessed with Angry Birds.
- Prefers the swings over the slides at the playground.
- Loves playing in the bath and finally no long cries when we have to wash his hair.
- Is content doing puzzles, playing with his Lightening McQueen cars or flipping through books.
- He absolutely adores Morgen and they play great together most of the time.
- Max is really interested in the color of people's eyes. His eyes are a very dark, blue grey color.
- He is still a picky eater and a very slow eater. Seriously, takes the kid 45 minutes to eat a bowl of oatmeal.
- Has a very distinct and darling way of marching.
- When Max wakes up in the morning or from a nap he calls out from his bed, "Mooooommm! I am a-wwwwaaaake!" And he always says it in a nasally voice.
- If Max is in a really snuggly mood, he will sit on my lap, lay his his head on my chest and tuck his little arms in by his tummy and let me scratch his back.
- The kid can pull some really funny faces.
- Still loves golf and bowling.
- Gets really winded coming up the stairs and usually asks him someone can carry him (hopefully after this surgery that will change!).
- He is really brave at the doctor's office. He doesn't even cry if he needs a shot but he gets hysterical if they doctors have to check his ears.
- Likes to sing but will usually stop singing if he realizes you are listening to him or watching him.
- He is stubborn little child but we love him so much! He makes our family so happy!

Click here to see the Max Report from 3 years ago.

Calling all hearts!

For Max's previous surgery we had asked family and friends to mail a heart with pictures or an encouraging message for Max. We took all those hearts and plastered his hospital room with them. It added so much hope and happiness to the hospital. We loved being able to look around and see all the support for Max and our family. We want to "heart attack" Max again. We are asking anyone who knows us and loves Max to send a heart. People have been starting to ask what they can do to help... this is it! We need support and Max needs lots of love.

I read recently read that the success of any surgery depends on the number of people cheering on the patient. I loved reading that because I know there are lots of people ready to rally around Max for support. So whether you are near or far, please send Max a heart and add to the army of support cheering Max on!

All hearts can be mailed to this address:

PO Box 67086

Portland, OR 97268

                                         

                                            Max's hospital room 3 years ago...
                                            And click here to see the full post.

It's been a while...

I can not believe that it has almost been 3 years since I updated this blog. It is time to start writing again because Max's next surgery is happening in less than 3 weeks. This is the "big" surgery, the one we have been waiting for, the Fontan procedure. We are nervous, anxious and also excited. It is surreal to think that a month from now we will no longer carry this huge burden of Max's surgery. It will be over! Max's heart will always be a concern since it will never be 100% functioning but after this surgery, his heart will be as healthy as it will be! I know it will be painful and frustrating for Max to go through the operation and recovery but I am so happy that this summer he will have more energy and be able to do so much more with his body without mommy fretting about every deep breath that he takes.
His surgery is scheduled for May 14th. At this point the doctors have told us the surgery will take anywhere from 4-7 hours. The length of time depends on how much scar tissue Max has from his previous surgeries and how accessible the areas of his heart are once the surgeons are working on him. The actual time on the heart-lung by-pass machine is relatively short which is comforting since that seems to be the scariest part of the surgery for me.
For now we are trying to prepare as much as we can... cleaning house, preparing freezer meals, planning babysitting for Morgen, Spencer is clearing his schedule at work, etc. We are trying to talk to Max about the surgery as much as possible. I feel the more he understands, the easier it will be for him to cope rather than completely surprising him without any preparation. He knows that he is going to the hospital. He knows that he is having surgery on his heart; although, I am not sure he understands completely what surgery means. He does know that is heart is going to be fixed, that he will get medicine and that he will have another scar. Whenever we talk about his scar he always lifts his shirt and proudly displays his chest. We love that!
I will do my best to keep everyone updated as we prepare and while he is in the hospital. This feels like the most efficient way to communicate each step along the way. Thank you to everyone for your past support and continued support. Hopefully this will be our last big "hurdle" for Max. All prayers and well wishes are greatly appreciated.