Monday, September 29, 2008
Saturday, September 27, 2008
Tuesday, September 23, 2008
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.
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.
Sunday, September 21, 2008
Tuesday, September 16, 2008
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.
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.
Saturday, September 13, 2008
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.
Wednesday, September 10, 2008
Friday, September 5, 2008
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
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.
Wednesday, September 3, 2008
Monday, September 1, 2008
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.