"Oh, How He Loves Us"

Everyone that sees Ayden these days talks about how big he has gotten. Before the Glenn surgery, people used to tell us the same thing, but back then they were referring more to how chunky he was. Dr. Kavanaugh mentioned today that he looked proportional; he's healthy but not over-the-top. Bryan already told you that he can't wear his 6-12 month clothing. He has also outgrown his size two diapers, which means that he can wear the size three overnight diapers and has one less interruption overnight (i.e. no more overnight diaper change!). At the cardiology appointment this morning, Ayden weighed 8.35 kilos (18.37 pounds), and he was a tad longer than 28 inches. I can hardly believe that the little boy I held after the Norwood surgery is the same boy that I have been loving on all day today!

Yep. Today was our family visit to cardiology. It's indeed a family affair. It's a difficult place to go alone with Ayden; he does so much better when he has Daddy to comfort and entertain him while I deal with paperwork and medical discussions. (Truth be told: I also do better with Bryan there.)

This morning's visit started with an x-ray. Ayden knew what was happening when we put him on the x-ray table and immediately began to cry. He hates being held down for the process. Then we worked our way to the fifth floor for weight, measurement, blood pressure insanity, oxygen saturations... the usual. Ayden acted like a pro for the check up, and he charmed the nurses, Dr. Johns, and Dr. Exil.

Dr. Kavanaugh told us that his chest x-ray still looked good, which is always good news but was especially important since one of his diuretics had been dropped from twice a day to once a day. A clear x-ray indicates that his lymph system has healed and that his body is tolerating the slow diuretic wean. In three months, that one diuretic will be removed entirely. In three more, she will begin weaning another diuretic. SLOWLY!

Dr. K also increased two of his heart medications. She dropped his potassium, with the hope that it will be one less contributor to his reflux. Since the potassium has been dropped, he will have to have blood drawn on Monday... I can't tell you how excited I am for that. Monday's visit to cardiology will hopefully be the last time we see the cardiology team for THREE MONTHS! Praise the Lord!

Congratulations to NURSE Kevin!

Ayden sees the pediatrician tomorrow. I am assuming she will be pleased with Ayden's growth since Dr. K didn't mention that it was a worry for her. I'm not sure if the pediatrician will make another formula change or if she will wait one more month.

Ayden seems to be doing great on the current formula and his feeding regiment of 170 ml five times per day. He won't, however, eat food. As we have mentioned before, Ayden has no problem with the actual liquid or solid foods; he has a problem with me giving it to him. It appears to be an ownership issue. Ayden officially begins feeding therapy on Monday, so I am hopeful that his therapist, Ms. Lori, can figure him out. I warned her that he was stubborn, and she said that she was too. This could be interesting...

Ayden's teacher, Ms. Martha, comes once a week, and he really likes her. Of course, she thinks he's wonderfully joyful. She says she loves coming to see him first thing in the morning. She works him pretty hard, and I like that he has someone else playing with him and exercising his body. She tells me that Ayden needs to think that what he is doing is his idea. Why do I get the impression that I have quite the independent child?!?! He has been showing her his idea of tummy time... which is not doing tummy time at all. It's rolling from his tummy to his back and repeat... as many times as we insist that he lie on his stomach. We have had to block the one direction that he rolls so that we can actually get him to spend some time on his stomach. One can't learn to crawl otherwise. Maybe he'll just walk first. I never know Ayden's plan until he has already executed it!

Ms. Martha is also fascinated by how much Ayden likes paper. Instead of letting Ayden play with paper (paper cuts, choking, etc.), I give him the next best thing to hold: flash cards! Ms. Martha tells me that only a teacher would think of flash cards for his/her ten month old baby. I don't belabor the information on the cards; I read them to him, but mostly he just bangs them together! I think Ayden's favorite part about Valentine's Day was holding the cards. I know his favorite part about the cardiology visit was playing with the paper covering on the patient table.

Next week Ayden has a physical therapy evaluation. I'm hopeful that he will qualify for PT. He's making a lot of progress, and he has gotten much stronger, but I know that he would really benefit from PT. I would also benefit because I could learn how I can best help him. We can see that he becomes frustrated with his inability to be mobile and that he likes being able to play sitting up. Those things will certainly come, but I believe that PT may help to move things along quicker. Of course, once he starts moving, I'll be chasing him around the house! He's not going to let me rest.

Ayden is sleeping better. Bryan and I have figured out a proper day schedule for him (I HATE breaking the schedule, by the way), and we have worked hard to make his overnight slumber as seamless as possible. Taking out his 4am feed and his midnight diaper change are some of the things that make him less restless. Occasionally, we have a rough time (I call it "the witching hour") around his midnight feed: he wakes up and then thinks it's time to party; when he finds out that he is still supposed to be sleeping, it makes for a lot of whining, some crying, and sometimes vomiting.

Our sweet boy's reflux continues to be terrible, but we are learning to manage that as well. As long as we can keep his hands out of his mouth when he refluxes, we can also avoid vomit. Needless to say, we have to closely monitor our teething baby. We keep his hands very busy.

Ayden and I love each other, but we both look forward to when Bryan comes home. Ayden lights up: he gets really excited and looks like an upside down caffeinated inch worm. (I'm sure that I have an extra bounce in my step as well!) Bryan scoops Ayden up and takes him upstairs, makings noises as if a giant were stomping up each stair. Ayden's open-mouthed smiles indicates that he is thrilled with the activity. Then we all play "Where's Mommy?" where Ayden twists and turns in his daddy's arms to try to find me in the room. He often will cheat and use the mirrors in the room to locate me. Smart boy. Before we put him to bed, Dada tosses him around... it's just a good time and makes for sweet family memories.

Ayden enjoys bath time significantly more than he used to. I always wish that I had the video camera going for bath time. Ayden makes me laugh a great deal. He has learned how to splash and play with toys. He especially likes to play with whatever I am using to wash his suds off. If I use one of his cups, he wants it. If I use my cup, he wants that too. He loves the cups that have holes in the bottom. Bryan will fill one and raise it above his head. Ayden loves the water showering his hands. He doesn't mind water getting accidentally poured into his mouth. (Go figure: He won't take a bottle, but he'll drink soapy water.) He doesn't seem to mind water in his face at all, which makes me excited about taking him to the pool. I look forward to the day that I get to teach him to swim.

Another fun part about bath time is when I have Ayden wrapped up in a towel. He and his daddy play this game where Ayden looks into the mirror, and then Bryan looks into the mirror. Then Ayden looks at Bryan, and Bryan looks at Ayden. The two look like they are trying to beat each other to the mirror or each other, and I laugh the entire time. I'm telling you: He's smart.

Ayden has also begun playing in his Bumbo chair, and he continues to love his bouncer. Bryan is really good about making him sit up. All of that combined has helped to build his core strength. Though he refluxes more sitting up, he tolerates it better when he is engaged in his toys and his dada.

I didn't do it.

Mama, the lens focus should be on me!

Okay. I'm trying to be cute, but the flash is cramping my style.

Mom! The flash!

I can't begin to type all that I have learned and loved about Ayden. I don't understand why Ayden has a heart defect. I can barely comprehend that Ayden is still alive. What I do know is that Ayden is a miracle and a blessing. I do know that God loves him (and us) so much that He gave His Son so that he (and we) might live with Him forever. I have a tendency to be paranoid and fearful for Ayden, but God made a plan for him that is perfect and eternal. I will rest in knowing God's love for our son is far better than any love we can give him. And we love Ayden a lot!

Grancee is cheering me on! We are playing with my new cars.

"He is jealous for me.
Loves like a hurricane. I am a tree
Bending beneath the weight of his wind and mercy.
When all of a sudden,
I am unaware of these afflictions eclipsed by glory,
And I realize just how beautiful You are
And how great Your affections are for me."

~David Crowder Band~