Friday, October 31, 2008

Runaway Train--All Aboard!

The Three Not-So-Silent Ninjas

Our life is picking up speed and I can't seem to find the brake anywhere. I guess if I ever thought I was getting off this crazy train, I'd better think again. This week has been a complete whirlwind of scheduling, activities, and emotions.

As I shared, sweet Cooper passed away this week at just six weeks old due to complications recovering from his heart surgery. Not only was the loss hard to bear, but it delivered a great big dose of reality right to our front door. We'd planned for these boys to grow up comparing scars and making each other feel normal at family Christmas parties. The truth is Cooper's passing has reminded of realities we'd rather forget. We've become so used to our new "normal," and take for granted McKay and his routine of oxygen, aspirin, and the "no cry" rule, that we forget our concerns are not typical of most two month olds. In just a few weeks I've started to feel like this is the way it will always be~ no worries, no complaining, just our reality. But when we learned about Cooper and the events leading up to his passing, I was jarred into remembering that these kids turn on a dime.

Cassie shared some great victories she and Cooper experienced in his last week here. She was able to feed him a bottle, take a really amazing pictures of him smiling, and was finally allowed to dress him (a really big deal in the PICU because it means there are few enough lines to accommodate clothes and that usually means your on your way home). So how do you go from dressing your baby for the first time on Saturday to making life and death decisions for him 24 hours later?? Not fair.

Impressively, Cooper's mom and dad do not seem hung up on the fairness of it all. They had an amazing photo tribute to Cooper and offered such comfort to all who came to visit. And, honestly, I was doing fine until I came to displays of his personal things~ his blanket, his binky, the only outfit he ever wore; common things all things scattered around my house that suddenly seemed to evoke such reverence. Cassie was still just beaming next to Cooper, so proud of him. And he looked so free. No tubes. No lines. No struggle. And although I hope to never see a casket so small ever again, I must say that little Cooper touched so many lives in such a short time, you have to believe he was an angel on a very specific mission. What an honor to be his parents. We so admire you.

And as life does, it went on at our house. Costumes, candy, missed bedtimes and all. My boys are full of joy and noise...I mean life~what a gift! In addition to trunk-or-treats, neighborhood Halloween parties and more, we hosted our annual soup and sugar cookie night at our home and man did the frosting fly! Here are some fun pics of our week.

What is going on and why am I dressed like this?

The Crew! Our kid's fun neighbor friends.

What secret ninja plot could he be hatching in that chubby little noggin of his? The cheeks hold many clues...

Happy Birthday Grandma Sheri!!

Monday, October 27, 2008

Sweet Baby Cooper

It is with a heavy heart I share the news that Cassie's darling baby Cooper has returned to his Heavenly Father. While the news is still very fresh with me and I do not know all the details yet, I cannot help but feel that Cooper has found some peace. In his short while here on earth he did not know what it meant to feel the sun on his face or take a walk with mom. His life was a struggle from the start; in a body that was not meant to last the decades we think required to make up a lifetime. He was a warrior. Sent to fight his fight, teach life lessons to those left behind, and report back to his Father.

What Cooper did know of this life may be some of the most important things~

He knew his parents loved him. Tyson and Cassie held a near constant vigil over Cooper since he arrived. Last time I saw Cassie I couldn't help but call her "Mama Bear" because of the way she protected and watched out for baby Cooper with each new nurse or doctor. She kept notes on what medications were given to him, when they were given, and what reactions he had. She knew that some of his medications when given with a bolus feed or other actions made him irritable. She knew what combinations of treatments made it more difficult for him to feed. We discussed the anatomy of his heart in more detail than either of us thought ourselves capable of. She went over and over all the scenarios~ she was Cooper's constant guardian. He must have felt so safe with her nearby.

He knew bodies aren't perfect, but souls are. Cooper was sent to this life a perfect spirit in an imperfect shell. For whatever reason, his mission here was made harder and shorter than most, but nonetheless important. As I mentioned in a post a couple of weeks ago, his serious forehead, wild hair, and knowing eyes combined to give the impression of an old soul; wise far beyond his time here. I am glad to have had the honor of meeting him.

He knew life was fragile. As I sit here worried about Cassie and wondering what can we do to make things easier for her, I know the greatest lesson Cooper's short life has given me is to appreciate the small victories the Lord has blessed us with so far. McKay is home. He is strong. I have seen him smile and heard his cry. He is forever etched into our lives. And no matter how much this experience reminds us that he is sick and has fierce battles ahead of him, we have him here today and we need to fill his today with life; not worries.

Tyson and Cassie~ we hope to talk to you soon, but until then we hope you can feel the strength and hope we're sending your way. Cooper is safe. He is calm. He can finally breath! And one day he will run into your arms again. We love you.

Thursday, October 23, 2008

Whadda Week!

I realize it's already Thursday, but this week feels like it may never end. It may have to do with the fact that we're reaping what we sowed by booking McKay's transfusion and two month immunizations on back to back days~a rather agitated child. McKay has decided to exact his revenge by waking us hourly at night to remind us that his Michelin Man legs ache from the shots and he may have a bit of a headache due to the changes in his blood and oxygenation levels. Okay, we're sorry! Uncle, mercy, we give up...what ever you want from us, just go to sleep!

We're pretty proud of our tender heart's progress, though. McKay weighs 11 pounds 15 ounces now and is 23 inches long. That puts him in the 80th and 94th percentiles respectively. Not bad for a kid with some pretty major challenges to overcome, eh? His pediatrician said he is "amazingly healthy." Now if we could just get that pesky heart thing resolved...Oh well! We'll take a good bill of health for now.

I am excited to share some more pics from McKay's pseudo-newborn photo shoot with Adilfa at Don Polo photography. (I say pseudo because he was nearly a month old~a couple of weeks older than my other babes' newborn shots...But what are you going to do??) She did an amazing job getting these shots considering he was a bit less than cooperative at times. Check her out if you need family pics, too. She's a gifted photog! (801.967.8106)

The marathon week of Halloween festivities begins tomorrow. Hallelujah for boys who can be swayed into cool-but-not-too-complicated costumes. I have feeling we'll be changing in and out of them several times daily for the next seven or eight days.

Thanks so much again for all your kindness and support. I hope you can feel our gratitude and overwhelming love coming right back at 'cha!

Tuesday, October 21, 2008

Transfusions are Boring

Is this any way to spend your birthday? McKay turned two months old yesterday and after 9 1/2 hours of waiting, waiting, waiting for the right blood, for the drip to complete, and for tiny Mac to drain off the excess fluid, our biggest celebration came when the words on the electronic monitor finally said, "Transfusion Complete!" McKay got what amounts to an oil change yesterday through a blood transfusion and seems to already be reaping the benefits. His sats this morning are hanging out in the low 80s -- the best we've ever seen them since he's been home. It looks like all those extra red blood cells are doing the trick.

We had no idea the procedure would take that long (and neither did his cardiologist). Apparently they are extremely cautious with transfusions for infants (a good thing), and then take even more precautionary measures when preparing blood for cardiac kids. That meant a double dose of waiting for us. My mom helped us pass the time by hand-delivering some cookies to us and holding McKay for a while why Matt and I had some quality salmon from the cafeteria. Fortunately, for him and for us, we were allowed to hold him almost the entire time. That made it all soooo much better.

Honestly the anxiety we experienced researching transfusions and worrying about this procedure over the weekend expelled far more worry and energy than the event itself. Laid out on the hospital sofa in McKay's room last night, Matt just looked at me and said, "Transfusions are boring!" We both laughed and were grateful for something that was more more boring than we anticipated.

We got home to happy kids tucked in bed, all cozy in their new PJs (thanks Grandma Sheri and Nate!). Our home was cleaned, laundry folded, and fresh sheets were on our bed thanks to Aly and Cole. What would we ever do without such an amazing family? They truly are the best of the best.

Mac will head into the pediatrician's tonight for a check up and to start his immunizations. Oh, how I hope he will forgive me for all of this one day! I even made him open his eyes after the IV team started his line yesterday to see that it wasn't me that was causing the pain. But it's like I always tell my other boys, "Sorry, you picked out a mean mom. If you wanted life to be easier, you should have picked a nice one." They always laugh. Hopefully McKay will have the same sense of humor. Here's to many more boring days ahead of us!

Friday, October 17, 2008

Beautiful Day, Bad News

The call I had hoped to avoid today came in about 11:15 this morning. I knew by the way the doc said hello it was not news we wanted. McKay will visit Primary's again on Monday for a blood transfusion in order to raise his hematocrit level. Simply put, the infusion should give McKay enough red blood cells to carry oxygen more efficiently throughout his body. Interestingly enough, depending on how little Mac's body responds to the infusion, this procedure may tide McKay over long enough to delay his Glenn by several weeks, even months. So once again all that was roughly planned is effectively scrapped and we'll wait for a new timeline to emerge.

Despite the surprises McKay manages to make life seem sweeter with a good dose of chubby-cheeked smiles.

Thursday, October 16, 2008

A Little Air Please

McKay made his way to Primary's for a big check up with his cardiologist today. Since he was last weighed, just 8 days ago, he's packed on another 3/4 of a pound to weigh in at 11 pounds 13 ounces. He is now 23 inches long (minus the hair), and still has saggy sats. His oxygen levels struck a bit of panic in his doc today as the pulse oximeter bounced a concerning read of just 55-63 when on his purple little foot. The doc asked the tech to recheck the sats using his wrist and he topped out at about 73. Better, but not awesome.

That performance earned Mac a new prescription that doubles his dose of O2 and a blood test. His cardiologist suspects he may be anemic. Apparently when the body is low on iron, the blood has a difficult time carrying oxygen as efficiently as it should. Unfortunately we won't know the results of that test until some time tomorrow. Those results could mean anything from McKay needing an iron supplement to a blood transfusion to raise his hematocrit. Let's hope for the vitamin, okay?

We have truly been dreading this appointment. And that dread seemed to crescendo this week as two of McKay's heart buddies went in for check ups and were admitted to the ICU when big-time concerns were found during their exams. These little sweethearts are good at big surprises. Fortunately for us, the biggest surprise we got today (aside from the iron thing) was his doc's decision to reevaluate him again in four weeks. That means no surgery in November. She said she can live with his condition "as is" for a while longer and thinks four more weeks will be a good time to check back and most likely start scheduling all the pre-op hoops (including the cath I had hoped to avoid) we'll have to jump through before McKay's next surgery.

We are learning more through this experience than I think we will ever be able to fully explain. Today, for me, was about trust. I realized tonight that this week has been "off" a bit at home because I let my anxiety about today's appointment creep into every aspect of our lives. The boys seemed too loud, the days too short, the house too messy, and so much of what I've vowed to appreciate in my day to day routine, too trivial. I did not give this hurdle over to the Lord the way I should have and I was not strong enough to carry it well. I have to trust the Lord will provide what McKay needs, when he needs it. That He will give us the clarity, strength, and understanding we need, when we need it. No more days in slow motion, paralyzed by "What if?" Isn't the "what is" enough to handle anyway?

We had the happy opportunity today to visit Matt's cousin Cassie, her husband and new baby while at Primary's. Sweet Cooper and his parents have been through some dark days, but things are looking better. Cooper is going on six weeks post surgery (forgive me if my timing is a bit off Cass!) and may finally be looking toward home. He looks like such a little warrior--battle scars and all. What a life he is being prepared to lead. You can just see the experience in his innocent eyes already--such a strong soul! Our continued prayers and good thoughts are with them tonight.

Tomorrow I will start again, anxious for the blood test results but not hesitating to live until they come. It's time to start new--regroup with a fresh attitude of trust, hope and peace. Here's to a few days of gorgeous, crisp fall sunshine and the good news that is sure to come on days as beautiful as these.

Friday, October 10, 2008

Take One for the Team

Our doctors have let us know that McKay should absolutely avoid contact with anyone who has not received the flu vaccine this year. So if you plan to visit with our little guy this winter we encourage (require is the word our doctor uses) you to get a shot for Tiny Mac. When you consider McKay will shell out $2K a piece for a series of three SYNAGIS shots to avoid RSV, can you really complain about the $15 or $20 bucks one little flu shot will cost you? We will even add your name to the blog in a column on the right. I know you want to make the list!

One of These Things...

McKay and I had a bit of a rough night last night. He wanted to chat and cuddle, I wanted to sleep. Our difference of opinion left us both a bit groggy this morning. Fortunately for McKay he can catnap all day. Such was the case when I sat him down on a chair in the boys' room that plays host to their zoo of stuffed friends. I just had to share this fun pic!

Wednesday, October 8, 2008

Watch Me Grow

Another check up yesterday and another milestone: 11 pounds 2 ounces. With his luscious locks, I wonder how much of that is hair? Crazy hairdo and all, that makes over one pound gained in just the last 11 days. At this rate he'll double his birth weight at exactly three months of age--just in time for his Glenn surgery. The only feeding issue with this heart baby is concern over whether or not I can keep up with him!

Of course weight isn't the only thing that will determine when McKay is ready for the Glenn. He'll go in for a more extensive cardiology follow up next week. Cross your fingers for us. Sometimes they require kids to get a heart catheterization prior to the Glenn so they can really check out what's going on with the heart's flow, pressures, etc. I'd prefer to skip on it if we can just because it gives me the willies to think of them threading the catheter through Mac's tiny arteries. I'm sure they know what they're doing, but still...

Tiny Mac enjoyed a luxury last Monday night normally reserved for firstborns -- a baby shower! Matt's darling family believes strongly that every baby deserves to be celebrated and the more children you have, the more you need a shower! Amen to that. McKay was showered along with his second cousin, Trayson, who was born just two days before. They are all outfitted with new clothes, blankets and a stash intended for new strollers and high chairs. Did I say hallelujah? I meant to.

Matt's Aunt Susan gave a special prayer that night and thanked the Lord for sending these beautiful babies into a family where there is so much love. I have thought about that over and over since she said it because it is so true. I believe in the power of love and touch and all around good juju when it comes to healing. And if that's all the medicine I can offer our little miracle I think he'll be in danger of an overdose. Our friends, our neighbors, our family --truly the outpouring of love has been amazing. I thank God for sending Mac our way where we can offer him the people in our life, he can feel of their power, heal and grow.

Monday, October 6, 2008

Just Because

Just because he makes me smile...

Thursday, October 2, 2008

Go with the Flow

McKay is such a trooper. Carpool. Music class. Soccer games. The poor thing gets moved mid-nap from dreamland to car seat and back again without complaint. Is this the fate of a third child? I remember cancelling appointments and waiting for hours when Ty slept. Who would mess with a sleeping babe? Not so for our latest addition~he's just expected to hit the ground running. What a sport.

His biggest outings this week have been to meet his cheerleaders at our workplaces. We are surrounded by such GOOD people. I am just in awe of the great vibes we feel from so many. Thank you. Thank you.

Sadly McKay has outgrown his bucket baths and has graduated to the tub. He LOVES his baths and would lay there for hours if we let him. Maybe he'll be a swimmer...that's a nice, non-contact sport. (Again, no scar down the middle of his chest for now because they did a thoracotomy for his first surgery. The scar from that surgery runs from under his right arm to the middle of his back -- I'll have to get a pic posted. This is proving very confusing to some!)

The cardiologist called today and moved up McKay's next appointment a couple of weeks. She said considering his growth she'd like to see him sooner than later. But she was careful to let me know that does not necessarily mean that his next surgery will be any sooner than his three month mark. She said they usually do all they can to hold of the Glenn until at least three months. She did say she expects his surgery will be very near that three-month mark, but we'll just have to wait and see.

If you were to ask me right now what I want to do, I'd say let's get it over with. I am done with the oxygen thing. I want so much to just pick my baby up and walk across the room without having to wheel an awkward and ugly oxygen tank behind us. I want to cradle him on my hip and struggle to cook dinner with one hand while I kiss his tiny, sweet head. Right now, I can't do that because we get tangled up and I give the poor guy whiplash every time I step on his cord. Hopefully the Glenn will free us!

All in all, our struggles are SO minor compared to what other families go through with their heart kids. Please don't mistake my rant as a real or valid complaint -- we'll take our lot and be grateful. Most of all I think I just want the world to see his tiny face as I do twice a day when I dress him--free and clear and so adorable.

I have to brag on Preston for just a moment. My bright-eyed, spirited three year old is not only reading along with his 5 year old brother, but sat down and wrote his name yesterday. (It's not perfect, but it is intelligible.) I was shocked. What a little egghead. Love it!