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.

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.

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!

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.

Just Because

Just because he makes me smile...

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!