Blessed

What a lovely Sunday it was. Matt gave McKay a beautiful blessing along with a multitude of other priesthood holders that will be significant examples to him in life. It was awesome to see him surrounded by such strength. There have not been many times in my life when I have felt so overcome with gratitude to be somewhere doing something so special. I don't know if it was because we wondered if this day would ever come; I don't know if it was the beautiful gift of understanding and gratitude for his trials Matt gave McKay; or if it was being surrounded by our family that made me literally shake with joy, but it was a wonderful experience I will always remember.

Of course, then it was time to eat. The house was filled with friends, family and food as we celebrated our little miracle. Matt's sister Hilary made a fabulous cake for McKay and he was held ALL DAY (his favorite past time) by so many adoring fans. Special thanks for Adilfa at Don Polo photography for coming through with some special pictures of McKay. I have posted a bad scan of her beautiful pic of him in his blessing outfit. I will try to get better quality stuff up soon. Much love!

Straight Up Thug

10 pounds 1 ounce. Let me say it again. McKay is now10 pounds 1 ounce. Official thug weight for the 5-week crowd. At another quality check up tonight his pediatrician says his growth is "awesome" and after checking his now waining sats, he'll give his cardiologists a call and let them know how quickly he's progressing. He said he'd love to see McKay have his Glenn before RSV season starts in November. Me? Not so much. November seems awfully soon and my sweet babe will barely reach three months old by Thanksgiving. This all seems to be happening really fast.

I cannot dispute that McKay is clearly outgrowing his temporary fix. His lungs are working visibly harder, his oxygen levels are dipping progressively lower, and we're having to give him little boosts of higher oxygen concentrations from time to time to bring him into a more acceptable range. Tiny purple feet and cold hands tell us he's going to need more gas soon. Who signed up for this anyway??

We are blessing McKay in church tomorrow and I feel like the timing could not be better to ask for some special strength from above. If not for McKay, then for Matt and me. This child gives us both moments where we are in more than a little over our heads. This has and will continue to be a journey of faith for us. We are learning to lean on others, our faith, and each other more so and harder than we've ever needed to before. Having to trust the judgement of others with the life of your child, having to trust your instincts in a foreign situation, having to say "Thy will," and mean it ...it's been an amazingly humbling experience. We are forever changed as people, as a couple, as a family.

Good news from Boston -- Luna's Glenn surgery was uneventful (if open heart surgery on your six month old is ever uneventful) and successful. Sweet Lu and her family are such special people. We send all the love and positive juju we can muster to them tonight as Luna continues to recover and her mother searches out ways to pass the time until she's on her way home, angel in tow, for a good long break from surgeries and consent forms.

Please say a prayer that our baby boy will stay little for just a while longer...

Made Me Laugh

I couldn't resist sharing this. It sounds like stuff I'd say to my closest friends...

The stone cold truth of great friendships.
1. When you are sad --I will jump on the person who made you sad like a spider monkey.
2. When you are blue -- I will try to dislodge whatever is choking you.
3. When you smile -- I will know you are plotting something that I must be involved in.
4. When you're scared -- We will high tail it out of here.
5. When you are worried -- I will tell you horrible stories about how much worse it could be until you quit whining, ya big baby!!!!
6. When you are confused -- I will use little words.
7. When you are sick --Stay away from me until you are well again. I don't want whatever you have.
8. When you fall -- I'll pick you up and dust you off.

Run Away!

Just a note to encourage myself...I started running again this morning. Wow. Did I really used to run 25-30 miles a week and think nothing of it? It's going to be a long road back. My great friend Lindsay made it easier on me by lending me an awesome jogging stroller. I think I just need new shoes to have enough fabulous equipment to make me feel guilty if I don't go...is that a valid strategy? If you have any suggestions for new running music, send them my way. I need some good tunes to move my booty along so I can lose it!


By the way, little Mac is the perfect running companion. He doesn't ask for gummies every 30 seconds and never once taunted me by saying, "When are you going to go fast mom?" What an angel.

Happy Monthday!

Riding in the car yesterday I mentioned to Matt that it was McKay's one month birthday. Wow. Could he believe all that had happened in the last month? All we've been through, learned, and celebrated? Could he believe that we have had McKay home for 20 days and could we even imagine life without him now? I was eagerly awaiting Matt's response when he turned to me and said unflinchingly, "It's not technically a birthday. That would be impossible. It's more like the monthly celebration of his birth."

What the heck? Could he understand the bigger picture of this conversation? After I maintained a stare that let him know I didn't think he was being cute or funny and rolled my eyes appropriately, I announced to the boys who were enjoying their new-found freedom in the up-to-now forbidden third row seating that it was McKay's one month BIRTHday and we needed to sing. Preston began to sing and then stopped us all when he noticed Dad was not joining in. "Dad, you need to sing to my baby." Matt turned to me and laughed and we all joined in a rousing rendition of Happy Birthday to McKay.

Whatever you want to call it, the 20th marked a month of amazing experiences for our family. In addition to McKay's trials and victories, our eyes have been opened to others who are doing all they can through tough circumstances. In the short time since we've been home, one of McKay's three month old PICU buddies received the heart transplant he'd been waiting for and has made amazing progress; others made the joyful journey home, some are still fighting their battles at Primary's and his east coast beauty, Luna, will check in for her Glenn surgery tomorrow. There are so many reasons to thank and still so many reasons to pray. For now we are enjoying the beautiful weather, our morning walks and many firsts. McKay will have another check up this Saturday~we're looking forward to more good news.

Eat, Sleep, Repeat

Another check up tonight for our little giant. McKay is weighing in at an amazing 8 pounds 11 ounces. And as happy as we are about it, his progress left his pediatrician speechless. Apparently heart babies "typically don't grow like this." He'll soon learn as we have that McKay is far from typical in many, many ways. Happy Four Weeks Old Tiny Mac! We are so unbelievably proud of you.

Life has felt a bit chaotic lately, but I think we're starting to get our groove on. The doctor advised us that while McKay is looking great we'll need to keep a close eye on his sats and make sure the progress continues. When I asked about getting McKay on a more predictable eating schedule, he said right now McKay needs to eat when he wants. When I asked about getting his sleeping schedule on track (meaning letting me sleep a bit more) he said we need to be careful about letting McKay cry. Crying is a pretty intense event for infants and the effects are exaggerated in heart kids. So for now we're to raise a pretty spoiled kid and feel good about it. That's quite a switch from the advice I got with my first two boys--poor things! I would agree, though, that if a spoiled baby is the worse thing we're left with at the end of this roller coaster ride, I'll call it a success.

The boys continue to be amazing with McKay and the babe is in love with his Daddy. They have some sort of secret tongue clicking language they use to share their secrets. It's actually quite cool to watch Matt click at McKay and hear him click back. And to top it all off, McKay won't do it for anyone else--Dad is so proud.

We're getting better at moving around with McKay's oxygen tubes. Preston even helps McKay take off his oxygen when it's bothering him...not good. I discovered him very carefully removing McKay's cannula a few days ago. He told me his baby didn't like it so he took it off, "Okay Mom?" No. Not okay. But dang cute. These boys were meant to be together.

We are encouraged by McKay's progress and proud of his brothers. Thanks again for your love, support and prayers. We ask that you please remember Matt's second cousin Cassie and her new baby Cooper in your prayers. He was born with a Hypoplastic heart on Sunday and will have his Norwood surgery on Wednesday. It's hard to know something about what they are about to go through and feel helpless to spare them from it. I'm sure that's how our Heavenly Father feels about the experiences He gives us from time to time. And just as it is hard for little McKay and Cooper to understand what's happening to them and why, sometimes it is our trials that come to save us, make us stronger, and prepare us for the better life that is to come.

Paradise

I sit here, my feet sharing the ottoman with nearly a dozen hot wheels cars that are just one of many messes left around the house from a playful Saturday. But all I can think about tonight is the sand between my family's toes a six hour plane ride away from this castle of chaos.

My sister Stacey was married today in Oahu to her sweetheart Stratton. It physically hurt to think about a gathering of those I love the most celebrating the beginning of my sister's new family. Alas, our sweet McKay's due date was set far before the wedding date, so what's a new mom to do? We'll just have to share in the stories and pics when the new Mr. and Mrs. get home.

We spent our Saturday night enjoying the gorgeous weather and the company of our amazing neighbors at the neighborhood picnic. It was fun to introduce McKay to so many who have been pulling for him and following his progress on this blog. We live among such supportive, genuinely kind people whose positive attitudes and cheer leading spirits have given our family a type of residual energy and strength that is hard to explain. So although we didn't spend today in an island paradise, we did celebrate a different kind of perfect. I love my life.

Good News, Bad News

We headed to Primary Children's this morning for McKay's first post-op check up. I have to say it was not the best of feelings to walk into that hospital again. I love/hate it there. It's a strange mix of emotions I'm sure will get more complex in the years and experiences to come.

The appointment started with a chest x-ray that McKay practically slept through. Then we headed in for an EKG, which he hated. They have to attach about 12 stickers with electrodes onto McKay's chest to perform the test. He hates stickers. I don't blame him as we are still working on getting all the sticky gum from his ICU stay off of his arms and legs. The test only takes about 5 minutes, but he screamed the entire time.

The technician started asking questions about McKay's oxygen saturation which was ringing in this morning at a lousy 65%. I told her that we were concerned as well as his spot checks continued to go lower over the past week. She immediately asked the docs about it and hooked McKay up to some O2.

Soon the doctors came in and agreed that McKay needs to be moved to 24/7 oxygen support. It seemed like good news to them as McKay now weighs in at a whopping 8 pounds 1.5 ounces and his lower oxygen levels are a first sign that he's already outgrowing his shunt. Seriously? It's only been 19 days since he got it! Their good news equaled one big, crappy reality check for me as it set in that we would be back to business fixing McKay's heart sooner than later.

So one phone call to the oxygen delivery company later and we're all set for weekly deliveries of air for our sweetheart. I know I should be glad that he's growing so big and strong...and I am. But it's such a bittersweet victory to do all you can to make sure your baby is thriving when you know the ultimate result of your efforts is another serious surgery and extended hospital stay. I just have to keep reminding myself that without going through this McKay will not live. It's just that black and white. It's even harder to remember that yucky reality now that we've had a chance to get to know this spunky little spirit a bit better. It's just that he looks so normal. Until you flip him over and see the big scar across his back you would never pick him out of a crowd (except for being so cute!).

Good news? McKay is growing. Bad news? McKay is growing and that means we will need to be vigilant about making sure his heart continues to do the job for him. We've been advised to make weekly appointments with our pediatrician so that he is seen regularly and frequently by a doctor who can monitor his condition in a more in depth way than we do. We'll check in monthly with the cardiology team as well.

McKay is truly a blessing in our home and as bummed out as we are about having to move from the spot we've just become comfortable in, that's the way the Lord works. Always moving forward. By the way, McKay is three weeks old today! Happy birthday Tiny Mac. Much love to all.

Diagnosis Details

Day 5 of having McKay at home and life is good. We've been taking morning walks the past few days and he seems to enjoy being outside (in his car seat, under a blanket...but outside!). He seems to be requiring a bit more oxygen to keep his sats up lately. That has me worried, but I am keeping a journal of his sat spot checks and his oxygenation levels with and without the cannula to discuss with the cardiologists next week. Hopefully they'll be able to tell us if his pattern is a normal one for babies like McKay.

Many have asked exactly what is wrong with McKay's heart. We have avoided going into a lot of detail because it is a combination of several complicated congenital heart defects that are extremely rare in and of themselves and even more so in McKay's combination. But for those of you who speak the language (or want to)...here's the report.

McKay's heart has been diagnosed with the following conditions:

• Double Inlet Left Ventricle
• Transposition of the Great Arteries (TGA)
• Ventricular Septal Defect (VSD)
• Pulmonary Artery Stenosis
• Dextrocardia

The cardiology team evaluated McKay's echo cardiogram following his birth and the resident artist of the team, Dr. Day, did this custom sketch of McKay's heart:

It doesn't mean much to me either until you compare and see how different the anatomy of McKay's little thumper is to a normal heart:

The first, most obvious difference is that McKay's heart is positioned in a reverse direction from a normal heart. That's the dextrocardia. Secondly, you'll notice how McKay has only one bottom chamber into which both top chambers of the heart empty. That's the Double Inlet Left Ventricle. You'll also see how McKay is missing the descending piece of the Pulmonary Artery (PA). That's the Pulmonary Stenosis. The break in the separation between the two top chambers of McKay's heart (the RA and LA in the pic of the normal heart) is the septal defect. Finally, McKay's transposition of the great arteries means that the aorta and pulmonary artery are reversed. Individually all of these conditions are serious and require surgery early in life to survive. Together, they are fascinating and generate a fair amount of interest from the cardiology team at Primary's.

McKay's first surgery involved receiving a BT Shunt. There is a movie about the invention of this surgery called "Something the Lord Made," if you are really interested in learning more. It's quite an amazing story of intellect and courage. The surgery involved creating a temporary conduit between McKay's left innominate artery and his right pulmonary artery to create blood flow to the lungs. The artificial pathway they created is actually just a small tube made of gortex. I have no idea how someone could insert something so small into a space so tiny to do such a big job for McKay's heart.

Prior to the surgery, they gave McKay drugs called prostaglandins to keep a natural hole in the heart all babies have called a PDA from closing as it normally does when babies start to breath on their own. Lucky for McKay his PDA was larger than normal so it helped him to maintain well until surgery.

All in all, McKay is healing well and is far more brave than I would be in his place. He will continue regular check ups with cardiologists who will watch his progress closely as he outgrows the shunt. They estimate he will need to embark on a more permanent fix about the time he doubles his birth weight at anywhere from 3-6 months of age. At that time he will undergo what's called a Glenn operation that will permanently connect/reroute blood flow from his superior vena cava to his pulmonary artery. They will also remove the BT shunt at that point.

The final operation will occur between 2-4 years old and is known as the Fontan. That surgery will permanently connect/reroute blood flow from the inferior vena cava to the pulmonary artery. I can't imagine how hard it will be to walk him into that experience knowing what we're in for. When all is said and done McKay's heart will only have to do half the work of a normal heart. His new plumbing will automatically reroute unoxygenated blood from his body directly into his lungs. Once oxygenated, the blood will flow to the heart where it will be pumped to the rest of his body. Pretty amazing stuff, huh?

So there you have it. Hopefully that answered some of your questions. Here's to gifted surgeons, steady hands and living at a time when we are blessed with brilliant medicine. I don't exactly know how to thank someone for dedicating their life to learning and perfecting techniques that will save my child, but I am indeed grateful to have that problem and will do all I can to make sure the Lord and the doctors He has led us to understand how truly thankful we are.

Happy Birthday Baby

McKay will be two weeks old at 2:29 pm today. Really, two weeks? The days and weeks have melted together into a soup of fear, surreal peace, and thanksgiving. McKay is an old soul who has changed the mood of our home and evokes a quiet awe from his brothers. (And to evoke a quiet anything from those two is quite a feat!) I find myself being the obnoxious mom who not only accepts compliments on what a beautiful baby he is but adds to them. I'm sure one day I will have to temper my enthusiasm for this little one (at least to strangers), but for now I'm one proud momma.

McKay made his first visit to the pediatrician's office yesterday and weighed in at an impressive 7 lbs 4 oz. The doctor was more than impressed that he had been able to maintain weight. I am so glad eating did not become the sticking point for McKay that it is for so many heart babies. We will go in for weekly weigh ins for the next little while to make sure he's maintaining his energy for and interest in eating. Honestly, he's got good genes for that sort of thing so we don't expect it to become a problem :).

McKay is teaching us to live in and appreciate the present. So although two weeks is an odd milestone to celebrate, we'll use any excuse to be thankful for our time with him. Many thanks and hugs to you that have showered us with support. You give us many reasons to celebrate as well.

Home at Last!

It's already 12:30 pm a full day after I should have posted this news and I have just now showered and dressed...there must be a new baby at our house.

We were thrilled to welcome McKay home about 2pm yesterday. He was sent home with a bunch of monitoring equipment for his breathing and heart rate and some oxygen to calm fears about his low sats when he's deep sleeping, but we're HOME. His brothers made a poster for the garage door that pushed me to tears when we pulled into the drive way. They have been so tender and cute with him--I am pleasantly surprised considering all we put them through in the name of McKay in the past 11 days. Hopefully they just remember this time as a showering of attention from friends and family (and way too many trips to McDonald's).

I was asked to stay and nurse McKay through our last night at the hospital to make sure he could gain weight nursing exclusively. He came through like a champ, gaining 30 grams our last night there. He did, however, create some excitement that I was sure would prevent us from bringing him home.

We were bunked together in a separate "family room" where I was asked to take care of McKay while the nurses simply monitored his sats in the NICU. About 45 minutes after we went to sleep his nurse came rushing in, flipped on the light and started moving McKay about to make sure he was okay. Apparently the alarms were turned off in our room, but McKay's monitors indicated that his heart had stopped beating. I had my suspicions as McKay looked great to me. I suggested that the leads on the monitors might be malfunctioning, but the nurse said she didn't think so and if it happened again they would have to move McKay back into the NICU nursery. Of course, I didn't sleep much after that as I watched his monitors and stood next to his bedside worried that our departure would be postponed. I prayed and prayed that God would help McKay be healthy enough to leave.

McKay's ECG monitor alarmed two more times and his nurse came in again ready to resuscitate him. Both times I was standing over his crib telling her that I was watching him breath and could feel the heartbeat in his chest. Finally, she changed the leads and the remaining 90 minutes of our first night together were relatively calm.

The next morning the cardiology team huddled as to what to do about McKay's tendency to dip into an undesirable oxygen range when he was deep sleeping. They decided to send us home with oxygen and a saturation monitor. Personally, I am a little relieved to have back up if we need it.

Anyway, we are home. You can expect us to be later than usual, messier than most and sleepier than we'd like, but we are content to be together. In 12 short days McKay has changed our family and our lives in too many ways to explain and probably more ways than even we realize. Your strength, prayers, and many acts of service for our family and especially our boys have meant so much to Matt and me. I could not imagine going through this experience without the love we have felt from so many and the strength we received daily from our loving Heavenly Father.

Before McKay was born there were a thousand reasons I could think of why although I was willing to accept the trial, we did not need this experience. Now, I feel there are a thousand reasons to be thankful to my Heavenly Father for choosing to honor us with this child. His heart may be the one being fixed over the next few years, but I'm sure it's ours that will end up better for it.