Saturday, November 29, 2008

We're Coming Home!

Mr. McKay was just cleared to begin his good byes to all his fabulous nurses and doctors. He will sleep in his own bed tonight across the hall from his brothers and absolutely enveloped by all the love we can give him. Thank you so much for all your well wishes and prayers. I truly credit McKay's amazing progress to the amazing juju so many of you have sent our way and, of course, to some pretty significant blessings from above. A lifetime of gratitude is in order and we are so glad to give it. See you at home!

Friday, November 28, 2008

A Bit of Drama

Last night McKay assured our hospital stay would not be as relatively uneventful as we had hoped. His heart rate continued to drop during the night, concerning the nurses, docs, and, most of all, me. After several texts and calls between the nurses and the cardiothoracic NP, she decided to come in and assess McKay herself. She felt his rhythm was a bit off and after some discussion decided to hook up the precautionary pacemaker wires McKay has in place to the pacemaker for the night. I hated watching his tiny chest be made to pump. I was devastated. In my exhausted mind I worried all night if one trip on the pacemaker translated to the permanent need for one.

Fortunately, it does not. They took him off the pacemaker this morning and sent us for another echo to make sure all went well with the surgery. McKay has developed such a reputation as the best baby in the hospital that they even sent him down for the echo unsedated--very rare. McKay did not disappoint, sleeping through the entire thing. My angel. The echo showed McKay's heart is communicating and conducting impulses as it should, so no more pacemaker talk. Whew.

After the echo McKay was hooked up to a holter machine for a 24-hour EKG study of his heart rhythms. I didn't think there was room for anything else on his crowded chest, but they found the space and filled it with wires McKay will wear until 2pm tomorrow. This study is just for McKay's ever-growing archive of medical records. It will give the docs a solid baseline of tiny Mac's electrical activity to help determine any future problems or needs. They tell me unless his low heartrate when sleeping is accompanied by other symptoms--fainting, change in color, etc.--not to worry about it. worries. And I thought I would be able to sleep after this one!

Aside from all the doctor drama the most important thing McKay did today was to get a much needed sponge bath. I must say the child was getting a bit ripe! He was happy as a clam to get sudsed up and smelling sweet again.

We're looking forward to a far more boring night. If things stay on track, we may be discharged as early as tomorrow. Is that unbelievable or what? Just five days door to door for open heart surgery. Just five days from scary blue to crazy pink. Just five days to pack in so many miracles. We are blessed.

Thursday, November 27, 2008

What a Difference Each Day Makes...

Today was my first Thanksgiving. I have so much to be thankful for.

I am thankful that Tuesday is over. It was not fun.

Wednesday was a little better...

I was breathing on my own again...

and I got to eat!

Thursday, Thanksgiving Day, was even better.

I moved to my own room, snuggled with mom...

and visited with my brothers.

They are my favorite!

One to Remember

McKay's first Thanksgiving is one that will change our perspective on what it means to be thankful for years to come.

We were happy to walk in to a wide-eyed McKay early this morning. He seemed so much more alert; he has teased us with half smiles all day long, but hasn't given up a full blown grin just yet (and who can blame him).

The darling NP from cardio thoracic surgery stopped by to check his incision and agreed the dressing needed to be changed again. When she and her team started clean up little Mac's battle wounds they discovered another stitch may be needed to stop the mess making. That has seemed to do the trick today as we've been able to keep his chest clean thus far and assure him less of a Halloween vibe.

Following the clean up, two of McKay's chest tubes were removed and the line that went directly into his heart was also taken out. It was something to watch them pull all of that out of my sweet little guy. He is such tough stuff--as they cut the sutures and then slowly pulled out the tubes and line his beautiful little eyes would well up with tears, but then he stoically sucked it up and did not cry through the entire thing. Amazing. I wanted to moan and wail for him.

Best of all, we've been moved out of the ICU to the surgical unit. HOORAY! We've never been to this floor of the hospital before as we were discharged straight from the ICU last time. McKay is now resting in a cheerfully decorated room of his own; complete with a recliner and couch for mom and dad--BIG HOORAY!

We plan to head home for a minute to pick up the big brothers and bring them up for a quick look at their baby. Every time I call home Preston's first question is "How is McKay doing?" I think bringing them up here now will assure them he is in a good place, getting ready to come home.

Yes home. Are you ready for this? The doctors told us this morning that McKay is doing so well it is likely we will be discharged sometime this weekend. I cannot believe it. We had been told to plan on two weeks--McKay looks on pace to do it in as little as 5 or 6 days. Unbelievable.

If I didn't know it before, I know it now. McKay is an exceptional spirit. He has the power to unite people, put priorities in order, teach about true love, and what it means to fight for what matters most. I also know for sure that my little exceptional spirit will be exceptionally spoiled for the rest of his life. How could I possibly deny him anything after seeing him go through this?

In the PICU we roomed next to a two year old recovering from a different heart/lung operation. We listened to him sob, crying out for mom, then dad, then both. At one point he began to get out of bed. It gave us a glimpse of things to come. I pray the Lord will help me prepare McKay for these necessary experiences in his life. I hope He can take the fear away and replace it with a quiet trust and understanding. This will be my next prayer.

For this Thanksgiving I am full of gratitude for all the blessings that are mine. For the sweet men in my life. All four of them. Man, they are a lot of work; but oh how I love them. I am thankful for modern medicine and understanding big brothers. For living close to so much family and the many ways they rescue me. For old friends and new ones, near and far. For those who understand what we're going through and for those who, thankfully, will never have to. I am blessed to be a mother who can look over to a sweet child finally at peace after a hectic morning of experiences no one his size should ever know and be assured, 100 percent, that we are meant to be together. For this I am grateful.

Wednesday, November 26, 2008

More Progress

McKay continues to do well. They extubated him early this morning and he has been on a bit of oxygen since then to help him maintain his oxygen saturation which, by the way, I am glad to report is now in the upper 70s/low 80s. We haven't seen those kind of numbers since he was last in the hospital. Let's hope they hold.

McKay is still slowly coming to himself again. I thought my heart would break this morning when we walked up to his bedside and his wide eyes pleaded with me to scoop him up. Of course, I cannot hold him yet because of all the lines and tubes coming and going through his busy body. The best I could do was caress his cheeks and that seemed to be enough for now. He is steadily losing lines he does not need anymore and once they remove his chest tubes and the line threaded into his heart, he will be safe to hold. I doubt I'll let go for a long while.

He has been allowed to eat and is wowing the docs with his guzzling prowess. They tell me he should be able to eat for longer periods of time now that he is better oxygenated. That may mean he'll eat for long enough to get full and we can get off the every two to three hour eating schedule. That's good news for mom.

So today is all about slowly and surely. He is doing amazing well and we expect he will continue to impress. He is such a tough, stoic little man. I am constantly amazed by his ability to pull through the worst of scenarios in the best of conditions. Thanks again for all your well wishes. You give us such strength.
(Please forgive the cell phone pictures. We brought the camera, but forgot the cord. We'll post better pics soon :))

Tuesday, November 25, 2008

With Flying Colors

The surgeon had spoonfuls of good news about McKay's surgery. He came off bypass like a champ. His pressures looked great. The anatomy was what they expected from the MRI and echo--with one puzzling exception. The PDA or developmental hole in McKay's heart; the one that all babies have in utero but closes very quickly after birth; the one they worked so quickly and hard to keep open with special drugs when he was born in order to maintain some sort of blood flow to the lungs; the one they were sure had closed shortly following his first surgery--that PDA was still open.

It is puzzling first because everything says it should be closed and second because if it was open McKay's sats should have been much higher. The fact that they were still so low with the shunt and the PDA open means that it probably bought him some much needed time to grow. I think it's an absolute miracle.

The surgeon also went over some of the finer details about some unexpected tweaks he took the opportunity to make to McKay's heart anatomy. He closed the surprise PDA, he enlarged McKay's ASD (a hole between the upper chambers of the heart--another defect that is actually helping him at this point), and began thinking ahead to some modifications he's going to have to make to McKay's next surgery due to Mac's dextrocardia --Am I making you sorry you asked yet?

All in all it was a good report for our miracle. He is swollen and aching, but well medicated and resting. The nurse let us know this is also called the "grouchy" surgery because the kids go home very ornery as they adjust to new pressures throughout their body. Think huge migraine for a few weeks.

We'll post pictures soon. We couldn't be more proud and relieved. Here's to a slew of far more boring days to cuddle and recover. We appreciate your prayers. He listens. He blesses. He loves. And we feel Him through you. Thank you.

Just Finishing Up

We just received an update that McKay is now off the heart and lung bypass machine and the surgeon is getting ready to close. They will do another echo to make sure everything is functioning as they would expect. We will meet with the doctor in about an hour for a full rundown on the surgery.

Our rockstar is back under his own power again. We can't wait to see him.

And He's Off...

From looking at our happy guy this morning, you'd think he was headed somehwere wonderful. Maybe he knows the hospital is his miracle destination right now. Whatever the case, he seems to welcome every aspect of this experience with, well, an open heart.

They just took McKay back to surgery. It's the leaving part that really gets you. Once the surgeon and anethesiologist explain all that can go wrong, they ask if you're ready to give them your baby. Huh? They are obviously not in the PR business.

McKay has been exceptionally calm and happy the past few days. It's a good thing, too. We spent an exhausting and frustrating six hours at the hospital yesterday waiting...waiting...waiting. During McKay's pre-op physical the Nurse Practioner became very concerned with McKay's sats. He has been really blue lately. Really blue. Saturday he had such a head-to-toe blue spell he almost got himself checked in a few days early. He pinked up (relatively speaking) enough after about 10 minutes to stay home, but it was a definite sign that it is time to start some major repairs. So yesterday when we came for all of his pre-surgery tests, he made them nervous enough that they contemplated keeping him. So glad they didn't. My heart was not ready to turn him over just yet.

I have hestitated posting the past couple of days because, quite honestly, I haven't had a truly cheerful bone in my body. It's funny this time around--although the first surgery stay was hard and we did all we could to will his tiny little body to learn how to function on its own, we didn't know McKay yet. We didn't know that he smiles with his whole body. We didn't know that his eyes radiate love and light. We didn't know that he can talk, and talk, and talk with a face full of expression; answering questions in a language of coos and yells we have yet to figure out. We didn't know his gut-buster giggle that seems an automatic response when you grab his plump little thigh. We didn't know the weight and warmth of his snuggle--and his preference for the practice on a nearly continual basis. We just didn't know McKay. And now we do. That makes this time harder.

A little bit about what they are doing today...

They will enter McKay chest through his sterum this time. Once he's stable they connect the heart/lung machine. This is an amazing machine that will keep McKay alive during the surgery as the heart has to be empty and stopped for the surgeon this time around. The superior vena cava (the main blood vessel returning the dark, unoxygenated blood from the head and the upper body) is then divided and connected to the pulmonary artery. This will create a passive method for McKay's lungs to receive oxygen. Despite all that's planned for McKay, his heart will never pump oxygen to his lungs as ours does; instead the surgeon will redo his plumbing so that blood returning from the body will automatically dump into the lungs to be oxygenated. Mac's doctor also told us that McKay's pulmonary artery is showing some narrowing on the left branch. He plans to correct that by enlarging the artery and using some donor tissue to patch the correction. That was new news this morning.

Once all that is complete, they will restart McKay's amazing heart. This surgery will assure more reliable oxygenation to the upper half of Mac's body. Good plan. We will worry about blue toes in the months, years, and surgery to come.

Thank you for your love, concern, and support. Even as I type Grandpa Phil (all on his own) has just fed, dressed, brushed hair and teeth and sent my fist two loves off to school. How amazing is that? I have offers to wrap Christmas presents, meals, and even enjoyed a delivery of hot pancakes from one of the busiest and best women I know. This is an exceptional experience on so many levels. Thank you for sharing your goodness with us. We will keep you posted with all the good news that is to come today.

Friday, November 21, 2008

Say Cheese

Baby McKay had some serious pictures taken yesterday. So serious in fact they had to keep him knocked out to take them. That meant no eating all morning in preparation for the sedation meds. Fortunately, Grandma Di took the day off and kept McKay distracted from his stomach. Thanks mom!

After a rough start trying to get an IV started (I hate this the is so frustrating to watch someone try again and again to insert a needle into tiny veins all the while hearing him scream himself into the dreaded silent scream...Did I not say he was a hard stick, please call the IV team??? HATE IT.), finally the good stuff was flowing and McKay headed into a peaceful fog.

First was the MRI machine. Such a big machine for such a tiny body! The docs spent about 30 minutes mapping McKay's anatomy and then sent him for another echo. Unlike Tuesday, McKay was completely out this time so the tech could move him and the machine to get some really amazing views of every aspect of his heart. I love watching this. McKay's heart is an amazing thing to behold. To look at it functioning without all it's "supposed to have" parts, I just wonder at the miracle of my baby. These were definitely the best pictures I've ever seen of his heart and how it functions. I couldn't help but thinking, "The body finds a way, the body finds a way, McKay will find a way."

We received our surgery plan and must return to the hospital Monday for a slew of pre-op exams and tests. It's funny when they said the surgery would be Tuesday, they failed to acknowledge that we would spend two of the five days until the surgery date at the hospital preparing for it...good times.

I feel guardedly optimistic about next week. It felt so good yesterday to call the oxygen company and cancel all deliveries until further notice--hopefully forever! There are definite upsides to getting this done sooner than later. As I watched McKay charm the Crocs off all his nurses after waking up yesterday, I couldn't have felt more proud or in love with my little man. Despite it all, he's laughing, he's cooing, and stealing hearts everywhere he goes. Well done sunshine.

Wednesday, November 19, 2008

Fast and Fasting

Well the doctors have met and the consensus is that our little sunshine will be spreading his light at Primary's a bit sooner than we thought--think Tuesday. Yes, as in 5 days. I was a bit taken back when the surgeon's scheduling office called to say, "They are preparing to see McKay on Tuesday the 25th." She said it right out loud like it was any other day. I just kept saying, "That's so soon, it's just so soon."

In fact it's so soon that on our way to the MRI and echo tomorrow she asked me to stop by her office at the hospital and pick up the surgery packet that let's us know all the details about McKay's surgery plan --no time to mail it. All the better I guess...that means there's probably not enough time for me to find somewhere to hide him and make this all go away.

On the upside, recovery time is usually around two weeks for the Glenn, which means there is a truly good chance we will all be home for Christmas. How amazing will that be? So much to be thankful for, so, so much.

Today we must prepare for all that tomorrow brings. I am less concerned with the fact my three month old will celebrate that milestone in the hospital under sedation, the subject of machines that will map his tiny body, as I am that I have to stop feeding him a full 5 hours before the procedure. One does not come to look and grow like McKay by fasting...

Tuesday, November 18, 2008

It's Time

It's time. That's what McKay's little body said very clearly to his cardiologist today. It's time to move forward. It's time to begin to fix what's broken. It's time to get uncomfortable again.

The appointment began with a routine check of McKay's sats. 71-68-69-70-68-68-68. His O2 level bounced around a bit, but stayed solidly in the unacceptable zone. They normally like to check levels with and without artificial oxygen support, but it was clear there would be no need to see him dip any further. He was weighed: 13 pounds 11 ounces. Wow. And measured: 24 1/4 inches. Double-wow. Mac's doc then proceeded to listen very closely to his chest. She listened and listened and listened. Apparently his shunt, which used to sound a very clear "swoosh, swoosh," inside his tiny chest is getting harder to hear. The increased hush motivated an impromptu echo cardiogram today to see if his shunt or pulmonary artery had developed any kinks that would slow flow to the lungs.

They usually sedate infants for echos because it requires a steady ultrasound of their heart which means the tech has to gel and scope the area immediately at the base of their tiny necks. Not fun. Lots of wild crying. McKay started out as you would expect and rejected all attempts at baiting him with a sugared-up binky. But once I picked him up, he fell almost immediately asleep and continued to dream of better days through the entire procedure. They got great pics of his plumbing and were able to rule out kinks as the cause of McKay's lack of oxygen. However it was clear his shunt is narrowing, constricting the small bridge of blood flow to his lungs it was meant to create.

All in all, as the shunt narrows and McKay grows, it becomes increasingly clear a bigger, more permanent fix is in order. McKay's cardiologists and the heart surgeons pow-wowed this afternoon to determine the best way to prepare for McKay's Glenn operation. Once they've made their decisions, the phone calls will begin. So far we've been contacted to schedule an MRI and sedated echo for later this week. We expect a call tomorrow with a definite date for his Glenn which we've been told will be in the next week or two.

And with that, life once again slides back into the surreal. This week will be a concerted effort to crystallize and then finalize Christmas preparations. Put the house into some sort of order. Talk ourselves into the courage it will take to willfully walk McKay into the hospital knowing full well what our visit will mean for him. And I guess that's just it. For McKay this visit means a chance to begin to live. To lose the tubes and gain a little freedom. While he will not be totally well, he will be worlds away from today. And that is something to celebrate. Our miracle continues...

Sunday, November 16, 2008

Fear Not

Do you ever have those days when you know God loves you? Today is one of those days. Hope is an awesome thing and I can feel it spilling out of me tonight as I listen to the sweet sound of McKay breathing as he sleeps. The Lord knows me, my son, our fears, and struggles. And He is reassuring me today that all I need to do is be still and know that He is.

I came across a video that absolutely shares the spirit of thankfulness, celebration, and hope I need to share:

Thanks so much for all the messages of surrender and support you shared this week. Your comments and advice gave me strength and made me laugh out loud. I am blessed to know you. Love you all.

Tuesday, November 11, 2008

Several Days Have Attacked Me at Once

You know the saying, "I try to take it one day at a time, but lately several days have attacked me at once"? That is exactly how I'm feeling lately. I don't know if it was Halloween or the fact that I still don't quite have my feet under the three kids thing yet, but I cannot recall a time in my life when I have felt so busy but accomplished so little.

My house of cards seems to hinge on the predictiable. Which, unfortuately, accounts for a mere 30 percent of my day. I can predict what time breakfast will be, when the kids will be to a from school, and the fact that they rest of the day is up for grabs. It's seriously maddening.

So give it up all you seasoned, amazing, put-together moms out there. What's the secret? Does this get easier? Do you just learn what to let go of? (Because lately I've chosen to let go of the ironing and Matt is not loving that.) Right now I feel like I want to hold on to everything "normal" so tightly that I'm being stretched in crazy ways. I want to do everything that we always have and I feel so frustrated and sad when it's just not possible. I think some deep breaths and a real effort at reprioritizing may be in order.

Flu and RSV season is officially on and our little quaratine for Mr. McKay has just begun. I'm already wondering if my kids will care or even notice if we don't go to a movie on Thanksgiving this year? What about the Festival of Trees? Can we go sledding? Ice skating? No, we're not on official lockdown (we can spend short times in small crowds as long as he stays covered in his car seat and away from people), but the sign on our door (thanks to our creative Grandma Sheri) sends a serious message in a kind way saying:

We love our friends and family, but we love our baby more.
Coughs, sneezes, or no flu shot, you'll have to visit at the door.

There is just something about having to feel on guard 24/7 for invisible and silent invaders (germs) that is exhausting to me. I'm trying not to turn my sanitzer-loving self or my kids into clean freaks, but I can definitely feel some mental side effects coming on.

We are very anxious about McKay's cardiology check up next week. Will they say it's time to prep for his surgery? Will they send us home to finish out the year? Will this never ending cycle of oxygen continue into the eternities?? One wonders.

This is McKay's one week supply of oxygen. We leave the empty tanks outside in the morning and a new crop is there by nightfall. Magical!

McKay is a cute little bucket of sunshine, though. He laughs and yells at his brothers to the point where he puts Preston into hysterical laughter. His happy spirit is such a gift. I will do all I can to help him continue to look at life through smiling eyes.

Special thanks to loving Aunties who spoil him rotten and protect him like no other when I have to be away. They keep me sane. Thank you.

Tuesday, November 4, 2008

Good Day

Today was a good day. Actually, I've been blessed with several solidly good days lately. I have begun what will be a sporadic start back to work. Basically they have agreed to tolerate me coming and going as I can in the next few weeks and months. Yes, I know I am blessed. Not only that, but today they pulled together a good size crowd filled with some of the people I admire most in the company to acknowledge my 10 year anniversary with the company. I know~10 years!

When I started Matt and I were newly engaged. What a difference a decade makes, huh? A master's degree, three kids, and two houses later, the only real constant in our whirlwind of establishing a life for ourselves has been my company. They have allowed me to develop and grow parts of me that would have been shelved long ago had it not been for their willingness to take a risk in keeping me around part time. I have been given an amazing opportunity to able to divide two of my passions -- my family and my career-- and stay decently content in the process.

Now that's not to say I don't have meltdowns every now and again where I wonder what the heck I'm doing trying to split my time between two loves that clearly deserve 100 percent of me. But I usually emerge from the funny farm with the same understanding each time~ This is a season of my life and there is truly no such thing as achieving a perfect balance.

So back to today and my ten years...This gathering of impressive people whom I adore proceeded to hold what I can only call a type of living funeral. What do I mean? I mean they said things that I could only hope to be 100 percent true about my work, my role in the company, and my character. Quite honestly I will spend the rest of my life trying to prove true many of the things said today. Such a nice problem to have, really.

I share this only to pass on my learning of the day which is this: Praise people. Call out the good in them that they may not have even noticed in themselves. Show appreciation of things large and small to your boss, your coworkers, your spouse and your children alike. Telling people what's best about them is an amazing opportunity to inspire them to live up to their potential. We are all in need of a little appreciation now and again~so let's be the ones to give it.