Thursday, May 2, 2013
Tuesday, March 13, 2012
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!
Monday, December 19, 2011
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.
Tuesday, November 29, 2011
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!
Friday, August 26, 2011
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.
Thursday, August 25, 2011
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.
Wednesday, June 8, 2011
It was nice.