I made our own Make A Wish

I've known for some time that I wanted Sam to have something special, before his next surgery. I truly believe, because I have to, that he will walk away from surgery and be ok. That sometime in mid to late August, my little boy will be back. Bouncing around the backyard, sounding out words with a big smile on his face. But I still feel this overwhelming need for some big "special event". So the minute I saw that Thomas was visiting Michigan, I knew I had to buy tickets, and I did. I surprised myself earlier, when I was talking with Jim. Ellie came home sick today, probably with Strep Throat (it's been going around her classroom since late March, and here she now sits with a fever and sore throat)...and I said to Jim, she has to be there. She just has to. This is it. This is the thing, and it is in two days on May 4th and we're all supposed to be there. We're supposed to have a family picture with Thomas, we get to go on a train ride with Thomas... and my eyes started to tear up... I'm starting to feel like every day I have to cherish moments, I have to soak him in...just in case...because the only thing I know, without a doubt, is that I've had today. And today was special, and today was filled with moments of love, and frustration, and amusement and Sam being Sam. So I continue to work on thinking positively, and looking to the future, far beyond the next surgery, into the space where he goes to Kindergarten, where he's talking in full sentences, where he's riding a bike...I work to see those things, so I don't feel the pressure. And yet I have this event, this Thomas the Train thingon Saturday, and when I unexpectedly started tearing up today I realized...this is my Make A Wish for Sam. I want, so badly, for him to have photos and videos and crazy fun times this Saturday...meeting Thomas...meeting Sir Topham Hatt :) I mean, that is just awesome! I want him to feel that awe, and excitement, and for Ellie to be there to be a part of it all. Please, oh please, do not let either of them miss this.

A year later

Every once in awhile, out of the blue, Ellie asks "how many parts does my heart have?" I answer: 4. "How many does mommy have? 4. Daddy? 4. Sam? 2." A little girl, still processing and trying to understand her brother's need for doctor visits, exams, three shots every month for half the year, daily medicine... I've also begun the basic concept of Sam's next surgery, so she isn't caught offguard by the concept when it comes time. There's always the risk of him suddenly needing surgery, however we think (and hope) it is still a year away.

I cannot fathom handling this next surgery. For his first, I barely knew him. He was four months old, just starting to show his personality, I was connected to him as a baby, as my son...but now...he's Sam. He's my little boy who, after getting three back-to-back shots in his thigh, cries for about 30 seconds and then high fives the nurse. Truly. Every month.

He's the 16 month old who will unload the pantry of all the canned goods, walking them across the kitchen to stack them up like blocks. And then, of his own accord, walks them back and tries to put them away when he's done.

He's my son, who still loves to nurse to sleep, who snuggles with me the minute I get home. The boy who loves to give "kisses and hugs" to his sister, daddy and mommy every night. Who has just recently started to snuggle stuffed animals and do that cross armed hug while swinging his body side to side. Adorable.

How do I say goodbye to him when he is rolled away to surgery this time? How do I even fathom the process of seeing him come out of surgery, entirely sedated, ventilated, hooked up to a million drugs and monitors. How do I begin to prepare?

For this, I have no answers yet. Watching Sam go under for his first sedated ECHO a couple of months ago was far more traumatizing than I anticipated. It was the first time I saw him sedated, since his surgery. Holding him, feeling him fight the sedation..feeling him go limp. It was terrifying. He was fine, of course, and it was a far more useful ECHO, which I entirely understand. But horrible to experience that process again. We have another ECHO in May, which is when we'll know about the next surgery date. So perhaps that is good preparation for me?...

In the meantime, I cherish the time with him, and with my kids together. I love seeing how he adores his sister, how they play together (most of the time) and how he continually learns how to do things (walk, sing, stack objects, point at books "read", draw...) He is such a sweet little man!

Unreal reality

I have really been struggling since Thanksgiving for some reason. I look back to the beginning of this journey, and realize it hasn't even been a year. It was Jan 4 of 2011 that I started eliminating all Dairy and Soy from my diet, thinking Sam's lack of weight gain was due to an allergy in my diet. It wasn't until Jan 19, 2011 that I started the T.E.D. diet which lasted into the hospitalization and realization that my baby boy was born with "half a heart" as it is commonly said, and that my diet was the least of his worries. The hospital journey wasn't until March 2, 2011.

How is it possible that it hasn't even been a year? Only nine months...really? That's it?!? That's how long I carried Sam. That is UNREAL. Really, so unreal I truly cannot articulate it with any accuracy. Words don't capture the severity, the weight, or the truth of what I feel.

In meeting with the Ann Arbor cardiologists for the first time last week we had some unsettling news, without any substantial information behind it. Unfortunately, they didn't tell us to have Sam fast for a sedated ECHO, so our visit didn't include one...we go back on Dec 28. Without the "picture" of Sam's heart, they don't really know anything, yet. There is some mention of a concern that his weight gain has significantly slowed. That said, our physical therapist in Chicago had warned us this would happen due to his increase in mobility. He's just burning calories right, left and sideways!

There was also some concern regarding his blood pressure reading much lower in his legs than in his arms. The doctor said that can be a sign of problems with the heart, but my gut says he is ok. The thing the doctor said that really threw me for a tailspin though, is that they do the next surgery MUCH earlier in Ann Arbor. A full year earlier. Typically they do the Fontan between 18 and 24 months. I'm sorry, what?!? But I'm not ready. I'm SO not ready. Like 120,000% not ready.

So I wait. I wait for the sedated ECHO. I wait till Jan 25 to hear what they see on the ECHO. I wait, and pray, and hope that Sam's heart is looking as good as it can, and that they are wanting to hold off on the surgery for awhile. I don't think I'm strong enough to go through all of this again just yet.

Coming full circle with an update

Sam finally met his one great-grandparent still with us, Jim's grandmother, Nanee. Such joy to bring generations together. It was a surpringly emotional time for me at Thanksgiving. I think it was a combination of feeling so overwhelmingly grateful for my family, and missing those that have passed, in particular my grandmothers and Jim's gramps. It makes me sad that they never met Sam, but I know they are part of his support system in a different way.

At the end of October we celebrated Sam's birthday, and I was determined that Sam's1st birthday was more about my little boy turning one, and not about his heart condition. I wanted it to be "normal" and not out of proportion in any weird way. It was really prefect: low key, fun, fingers in the icing of the cake, celebration with grandparents, cousins...family focused.

Sam is such a riot these days. He's crawling a mile a minute. He now motors up and down the stairs (he just learned that little trick!) He maneuvers all along the furniture and is quite clever in figuring out how to get around. Not quite walking, but it really is just a matter of time, and I think some more strength in his legs. He's freakishly strong, considering everything he's been through, but walking takes a great deal of coordination and strength, so he's almost there! He also babbles all the time.

I love hearing him talk - he wakes up, turns and smiles at me and says "hi" now. That is of course followed by what sounds like Chinese to me, but he is so sincere and enthusiastic that I have to play along. It really starts my day off in such a wonderful way to see his sweet face and hear his crazy babble! He says mama, dada, hi, and has started to say more and all done in sign language. He understands much more than that and is really determined to figure it all out!

He adores his sister and I can tell he will pretty think anything she does is awesome. I love the relationship they've started. Ellie clearly wants to take care of him, and we are working hard to alleviate any sense of weighted responsibility she might have. Sometimes she seems to take on too much responsibility for him and it is not only not necessary, but it also isn't the right dynamic. So we're working on that. She comes with us to all of his doctor appointments and seems to be very curious about what his doctors have to say. I'm not sure how to tackle talking about his next surgery with her, but I know we have at least a year, if not a bit more, before that becomes a pressing need.

The doctors here in Ann Arbor seem great. We've met with our pediatrician and meet with the cardiologist in a couple of weeks. Anxious to have "our medical team" on board in case of any emergencies. As our Chicago cardiologists said - you want to know who to call and who is there to make decisions on your behalf, before there is an emergency. So we'll have another echo, possibly a sedated echo, so that the local cardiologists can really get to know Sam's heart and his unique condition. I think once that is all taken care of I will feel a bit more settled here. Meanwhile, he is just a normal kid for the most part. If you didn't see him take his medication, or catch a glimpse of his ever disappearing scar, you would have no idea he's already had open heart surgery.

I feel incredibly blessed to have this little man in my life. At one year I can tell he is a happy, determined, funny little guy who will continue to light up my life, and all those he touches. I promise to keep you all updated from time to time, but for now, we are all doing so very well!

Jenny

She is a godsend. She is a hardass. She is one of Sam's angels.

Jenny is Sam's physical therapist. She comes to our home once a week, for an hour, and makes Sam work. She make Sam sweat. She is the reason our little boy is so much stronger today than he was just three short months ago. Jenny breaks down the nuances of how a baby develops into these bite-sized chunks and makes sure we really understand what to work on over the next week. Then Jim works with Sam everyday while I'm at work, and every day when I come home I see the improvement.

It's the left leg that always wants to curl in and we used to not be able to straighten, and now it is starting to straighten out. It's the boy who used to always want to be on his back, and now hates being on his back. The way Sam used to flop over when he sat, and now he sits, and twists, and "crosses center line" (reaches across) and doesn't lose his balance. The way Sam is starting to be able to look up and not be so tight in his chest that he can't move his head independently. The improvement and development is staggering.

Yesterday, I was able to get home early from work, in time for Sam's PT. Sam was still sleeping, so I went back to his room and cracked open the door. Jenny arrived, we caught up for a minute and then I went to check on him, and there he was standing in crib, bouncing and smiling, peering over at the door with intense curiosity and excitement. When I brought him to the living room and he saw Jenny he squealed. She held him and he started patting her cheek and smiling at her. Like he knows how lucky he is to be here, like he knows how great she is and that she is helping him get better. He is my constant reminder to feel lucky and grateful. My sweet son continues to give me the gift of perspective.

The last three months...

I've been noticeably absent here, you might say. The last three months were overtaken by so many things: closing on the sale of our Colorado home (in three days) and taking a hit in the sale, sizable transition and stress at work for me, some work shifting for Jim, helping Sam recover from his surgery and the normal parental piece of figuring out how to manage two kids! There has been a lot I've wanted to share here, and taking the mental space and physical time has not seemed possible.

The good news to share is that Sam is thriving and wildly happy. He is such a determined and sweet little boy. It is hard to believe he is 10 months old next week. Coming up to 18 lbs, his legs are finally getting strong and he is desperately wanting to really crawl and move! He has physical therapy once a week with Jenny, and occupational therapy once a week with Jodi. Both women are through the IL Early Childhood Intervention offices. It took us a little while to really get this service started, but it is such a gift! We started in June, when Sam could barely sit up. He didn’t have the core strength to sit, couldn’t prop with his arms or push up much laying down. He wouldn’t even tolerate being on his belly for more than 30 seconds!

Now, he can roll across the floor. He pushes up completely with his arms (prone position) and can rotate 360 degrees in prone. He can push up into the crawl position, but can’t quite crawl yet. He belly crawls…backwards! (kind of a riot to watch really) He loves standing next to something, but needs you there to help him fall safely. He is “this” close to really crawling, staring to cruise the furniture and I feel his frustration! When I get home from work, he is so frantic to get to me…I simply cannot make it from the front door to him fast enough. He thrashes out to get to me and flops on his belly, then screams in frustration. Man, such a hard age! But overall, he is doing so well. His development is essentially two months behind, which is a vast improvement over the three to four months behind when we started all of this.

Sam loves to babble and will sometimes go on for awhile. He frequents the “dadadada”, loves to make zerbert sounds, “thhhbbbts” with his tongue, there are a lot of other random consonants and vowels, however the one that truly gets me is “mama” of course. It used to be that Sam would say “nana, nana” for nursing. But a week ago, I came home, peeked around the corner and he screamed “MAMA”! I should say, he vibrated Mama, because it flew out of his mouth and his arms and legs were aflutter trying to reach me. It was beautiful. That ecstatic moment was worth everything and anything that I may have felt possibly challenging in the last three months!

Alternate reality

It has been nice for the last month to pretend we have normal lives. Perhaps it was living a bit in denial...maybe that is ok? We had the luxury of a few weekends where we could have some quality family time, going to the farmer's market, picnic in the backyard, walks around the block, playgrounds...just "normal stuff". If it weren't for the obvious scar that I can't avoid seeing hundreds of times in a week, I would have to be honest in saying I didn't think much about Sam's heart or the future.

It was nice.

I say that not to be cruel, but to be honest. Three months ago we were naively living as if we were just a ho-hum normal family with a regular ol' life. No big surprises, just usual concerns of trying to sell a house (still...), trying to figure out how to raise a three year old, how to get our four month old to gain weight, nothing major. The fact that our family and its dynamic is forever changed is still something that is sinking in for all of us I think.

In the last week we've had three appointment for Sam and after this last one, on Tuesday, I lost it. I was (am?) overwhelmed. I hadn't given a great deal of thought to Sam's condition in so long, and it was hard to hear two days in a row how he's behind...how we have to work with him to get him stronger and help him catch up. Please don't misunderstand, I am ecstatic to finally be starting physical therapy. To have multiple people evaluate him, help us know the right ways to work with him...it is fantastic! It is also very hard. I'm glad I have these therapists to hold up a mirror and say to me, your son isn't just the average kid. It's time to fully face this, embrace it, and move on.

So here I am. Facing the fact that my son has some work to do. He has some catching up to do physically. He has another surgery in a year or so. He'll have more work to do after that. He may even have more surgeries down the road. This is my alternate reality. My daughter has to adjust to Sam getting therapy 2x/week and getting this special attention and we, as parents, have to figure out how to balance that out for her. This is our family right now. Time for me to figure this out! More to come, I'm sure.