Here’s to a Happy & Healthy New Year!

Happy New Year, everyone!! As the New Year’s Eve minutes pass by quickly on their way to midnight, my thoughts are focused on our children. Five precious little ones, four of whom I’m leaving at home yet again as I try to move mountains for one of our special and chosen sons. Our beautifully chaotic life passed by like the speed of light as we find ourselves traveling thousands of miles again to Boston to strengthen one little but very mighty heart!

Our Apollo has changed in ways we didn’t think possible (truly!) since he came home just 7 short months ago. He is cherished by so many as he has nestled his way into many arms and hearts. It’s easy to realize quickly that he is very special. Yes I know, all children are special but he’s super extra special! He has a dynamic personality coupled with a mind that thinks so deeply and inquisitively, eyes that twinkle, a smile that spreads across his whole face with pure delight, little fingers that can tie anything and everything together, a giggle which quickly turns into full-body convulsions, and hands that fit perfectly in mine as he proudly walks next to HIS mama. Everything he plays with, from cars to animals to inanimate objects like blocks, all turn into families. It may seem silly to some that there’s daddy, mommy, and baby Lincoln Logs but in reality, it’s the beauty of adoption and attachment. We all take having a family for granted but not Apollo. Not for one day. He cherishes us, is proud of each of us, and loves us fiercely. And if you’re not a part of our family, he’ll try to make you part of it. His heart is bursting to love and be loved and it’s an honor to be the one he calls Mommy. 

Don’t get me wrong and as many of you know, we’ve had a challenging 7 months together. Much more difficult than our transition with Magnus. But it has made watching him grow, develop, and blossom that much sweeter as we look back at where we started together. We’ve had SO much fun and have made many memories which will last a lifetime. We’ve already started organizing pictures for Apollo’s 1 Year Family Day video like Magnus’s and we’re sure it’s going to be another hit! I could go on and on about our time home but I’ll let you peek at some of the pics (and of course I don’t have access to some of our best ones since I just switched to an iPhone - jury’s still out on it!).

Ok, now that we’re caught up a bit, let’s focus on what we’ve been worrying about since our last trip to Boston in June. Apollo and I will leave New Year’s Day to see if he qualifies for another open heart surgery in Boston. This is the surgery we had hoped he could’ve had when he first came home but his left pulmonary artery and left lung were too underdeveloped. Dr. Emani worked his magic and our local team in St. Louis believes he opened the blood flow enough to qualify him for a Glenn shunt which is the next stage of his surgical care. We have been praying fervently for this to be true and will know with certainty after his heart catheterization on Wednesday the 3rd.

I get asked time and time again if Apollo and Magnus have similar heart defects. Quick answer - not at all! Each boy has a long list of CHDs but despite Magnus’s being very severe, Apollo’s are much worse. Magnus’s heart was essentially reconstructed and is functioning close to a normal heart. On the other hand, Apollo’s will never have this ability. We were told recently by our local cardiologist that he may likely need a transplant at some point in his life. This is hard to swallow but we take comfort in knowing he may be a recipient as opposed to not qualifying. Time will tell what God already knows and we trust in Him above all!

See the difference in their lips?! :(

We have clinic and pre-op appointments on Tuesday and the sedated cardiac cath on Wednesday. Apollo will probably be admitted again but hopefully won’t stay sedated as he did in June. He was so critical, way more than we realized, so it was necessary. Now we’re hoping they’ll wake him since he is so much more stable. We’ll meet with our team to hear if he’ll have surgery on Friday or if we’ll return home because his body isn’t ready again. Please join us in praying that Dr. Emani was able to grow his left PA and lung!

Finally, some of you may know that Apollo wants to be a pediatric heart transplant surgeon when he grows up. Omg! You can often find the boys turning our living room into a hospital as Magnus takes over the nursing duties and Apollo gives directives as the doctor. Now if you’re one of the lucky ones, you’ve heard him describe what he’ll do in great detail. But for those of you who haven’t, it goes something like this...”I’m gonna help da kids. Doctors don’t hurt da kids, they help them. I gonna cut them open, take out the old heart and put it in a bucket, and then put a new one in. Sometimes I’ll put in 2 hearts!”. Oh my word! And this is how we learned about his big, big dreams and hopes for his future. Time will tell and we’re excited to see who this lil hero becomes! 

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Apollo happily awoke this morning (New Year’s Day), excited to go to Boston. Not too much gets past him and even though I wished he didn’t, he knows there’s a possibility of surgery. When told we were going to take more heart pictures, you could practically see the wheels turning inside that crazy-smart brain as he asked if he had to get any ouchies. He continued to process it all and asked if he would bleed which I’m sure means surgery. He asked three times “if the doctors say we have to stay a while, we have to stay?!”. My stomach churned as I confirmed his fear. 

This surgery is different than before. We were literally moments away from losing him last time. He gasped for air, required oxygen, tired easily, and was very weak. Today, he runs around and doesn’t stop any sooner than his brother or sisters. It’s awesome to watch! If you look past his blue-tinted lips and clubbed fingers, you’d think he was doing just fine but that couldn’t be farther from the truth. His little heart has needed this specific surgery for 4 years and each passing day only damages his heart as it works extra hard to pump and oxygenate his blood. But if you look at him, you wouldn’t guess that. So this is why my heart is so extra heavy as we begin another fight to save his life. He appears to be a “normal” 5-year-old who loves preschool, playing at home, and being in the mix of everyone. 

There are multiple expected complications that will arise during recovery including unbearable migraine headaches due to the new blood flow from this surgery. I’m so very fearful of these for him but we’re hoping and praying that Boston has a magical cocktail which will combat them. If not, a very experienced heart mama has been an invaluable resource in sharing the medications that worked for her little warrior who had these headaches for months. Months!! Please dear God, spare my son this pain. I ask that you specifically pray for these headaches to be non-existent to minimal. 

We were thankful our flight was delayed only by 1/2 hour this morning since winter weather, especially Boston winter weather, can wreak havoc on flight schedules. We gave hard hugs and sweet kisses goodbye, and waved to Daddy tearfully as he pulled away from the drop off area. Several ladies giggled with delight as Apollo tried to yell goodbye through the window. I told them what lies ahead for our little guy and one asked to pray over him. She tearfully asked God to give him strength and allow him to grow to be an old man full of wisdom and happiness (insert a stream of tears from me). Her words flowed beautifully as several of us hugged and wiped our eyes. God has placed multiple strangers in our path who have comforted and provided cherished words of support. I’m so thankful for this faithful woman and the prayer she bestowed upon our boy.

Apollo had the privilege to “fly” our plane as co-captain today. He was beside himself with excitement! He continues to touch many who marvel at his bravery and cuteness. :)

We’re all settled in at our patient house and ready to tackle what lies ahead starting with a 7:30am appointment followed by more throughout the day. Thank you to everyone who has reached out and those who are praying and loving us from afar. I wish I was half as brave as my baby has to be but I’m not. My Boston strength started to return to me throughout the day so I can feel you lifting us up! He’s ready to put on his superhero cape once again and be the warrior he was born to be. And I will follow his lead. Let’s do this!!