It's a Wonderful (Miracle) Life

Clinic Mondays can provide a weekly sense of relief and an abundance of information. This week proved no different. Ayden had an ECHO done yesterday, and Dr. Kavanaugh, his pediatric cardiologist, was specifically looking for five things, in light of his upcoming surgery. (Now this is the part where I act like I know what I am talking about, but I really have no idea.) Three of the five things were shown to be going well; the other two, she would like to see some improvement.

Good

1. The atrial septum is nonrestrictive.
2. The pulmonary arteries are growing well.
3. The neoaortic arch is growing and free of blockage.

Needs Improvement

1. Ayden's tricuspid valve is still leaking from when he had the cardiac arrest. Based on the ECHO, the leakage is considered to be mild to moderate; however, the coloring in the ECHO sometimes makes leaks look worse than they are, so Dr. Kavanaugh is not sure there is reason for concern. The valve will be checked at the cath; should it prove to be worrisome, Dr. Bichell may suture it when he does Ayden's surgery.
2. Another byproduct of the cardiac arrest was a decrease in Ayden's heart wall motion. Dr. K would like to see his wall motion at 45%; Ayden's has been between 37% and 40%. These percentages are not terrible, but they could be better.

Heisman
(We did not position him like this!)

Denise, Ayden's speech pathologist, also came to observe Ayden's eating prowess. He downed 15ml for her, but he was quick to stop at 15. We speculate that Ayden may only be taking enough from the bottle to remove the sensation of an empty stomach. He may not be willing to eat more because he may have a bit of a liquid oral aversion. In other words, if Ayden isn't hungry enough, he probably won't eat from the bottle, though he definitely has the ability to do so if he desires. We are all encouraged by what Ayden is willing to do right now. Considering all that his body has had to overcome, his ability to suck, swallow, breathe is encouraging and appropriate. He is doing exactly what he should be doing until his next surgery.

Mother Teresa

Ayden does enjoy feeling full. I had to call the clinic in the middle of last week to request an increase in Ayden's feeds. He was grumpy about thirty minutes before every feed, and he was sucking unmercifully on the pacifier. Once his feeds were increased, he has been far more satisfied... He is also far bigger! Ayden is beginning to get some fat rolls on his arms and legs. At clinic this week, he was 5.75 kilos! That's 12.65 pounds! Last week he was 11.77 pounds!

Caught!

Yesterday's Clinic Monday felt far more stressful to me than normal. I could attribute the stress to the five thousandth attempt for a blood pressure on my screaming child, or maybe it's just that I am overwhelmed by this daily fear for my child's life and well-being.

Ayden has just discovered that he has a tongue.

I have become increasingly terrified of the next hospital stay, the upcoming catheterization. Though the event is planned to only be a one night stay in the PCCU, I nonetheless loathe the sedation and intubation that my son will endure. Based on the results of the cath, Ayden's second surgery, the Glenn, will be scheduled within the month. Honestly, the surgery makes me feel like I am going to throw up. For some reason, I felt stronger, more prepared, for the first 12 weeks of his life in the hospital. This upcoming event just makes me want to crawl into the bed and sob.

I realize that all of these procedures are necessary for his heart, but he's developed and grown a great deal at home. He's comfortable here, and I know that no matter how wonderful his nurses and doctors are in the hospital, living in a four-walled room attached to monitors and subjected to the constant whirlwind of noises and personnel visits is not the same. I used to think that there was consolation in knowing that Ayden won't remember any of this. I used to think that it was harder on me than it was on him. Yet... I remember images of my little boy bloated, chest open, tubes exposed in every direction, and I feel so sad for Ayden. His miracle life is nothing short of painful and scary.

 

Ayden's miracle life also brings hope and joy. Perhaps the reason I struggle so much with the additional surgeries is because I have learned so much about Ayden over the past month. I can't help but just adore how precious he is. I watch him smile in his sleep, and then I watch him smile while he plays. I laugh at the way he dances to music (it looks like an aggressive march). I love how he elongates his arms and legs for a full stretch when he awakens. I marvel at his ability to use his hands to feel and grasp things, even though they are covered in mittens most of the time. I revel in the moments that he allows me to cradle him in my arms. (These moments are already passing.) I value the moments that we sit together watching baseball (I usually hate watching baseball on television), Sesame Street, Shrek, and other shows or movies that fascinate him. I enjoy the discussions that Ayden and I have, and I think it's really cool how varied his noisemaking has become. (He'll probably talk before he walks!) Dr. Kavanaugh commented on how well he focused on her when she talked to him. He does well with paying attention and with following things with his eyes. He has shown better head control and strength. Ayden really is so amazing, and God continues to bless our family with his physical growth and developing personality! I wish I could capture on film just how awesome our little man is, but my meager attempts just give you a glimpse into the wonderful life that Bryan and I get to experience everyday.

Ayden, what are you up to?