All New Picture-palooza!

Anyone want to take a guess as to what he's staring at in these?

Yes, he really does smile as much as these pictures suggest.

 

Special thanks goes out to Grandad for picking out my cool outfit.

We have made a concerted effort to work with Ayden on developmental things.  Here, I am holding him in a sitting position so he must support and control his head.  He has been doing pretty well with it.  Well, for short periods of time, at least.

Saturation Scare & Cath Call

We daily check Ayden's oxygen saturations, better known as "sats." Ayden's sats are supposed to remain between 75 and 85. (Those of us with healthy hearts sat at 100%.) I usually try to check his oxygen saturations while he is sleeping so that I can get the most accurate reading. In other words, I would prefer that he not be flailing his arms or legs in a dance march. Yesterday's sleep sats were somewhat scary, 68-74. Though he looked perfectly fine (they always tell us to "look at the baby"), I woke him up anyway. Once awake, his sats were all over the place, though they were in the acceptable range. Since the low numbers were unusual for Ayden, Bryan and I conference called the clinic, and Dr. Kavanaugh requested that we frequently check his saturations; should he fall below 72, we were to take Ayden to the ER to be admitted for overnight observation. The fear of low saturations is that his shunt, the device that Dr. Bichell put in to redirect blood flow, might have clotted.

Check me out! My t-shirt rocks!

When Bryan got home from work last night, we ate dinner (thanks to Lisey!) and then checked his saturations. They were yet again low, and I began frantically wracking my brain for all of the hospital necessities Ayden might need. After Bryan tried Ayden's hand and foot, I told Bryan that I was somewhat skeptical of the sensor attached to Ayden. (Sometimes frequent use causes them to lose accuracy. We had used this one every day for almost a month.) On a whim, Bryan requested that I get another sensor...

You probably just see my tongue hanging out...
Look! My saturation sensor is attached to my right hand.

AND...

Ayden had perfect sats! We left the sensor attached to his foot, and Bryan checked him at every feed last night. Ayden never fell below 80! PHEW! (Needless to say, I will probably check his saturations neurotically today.)

Mommy & Daddy are experimenting with feeding tube tape, so I don't have an allergic reaction.
Though they have to replace this kind more often (and it takes away from my cuteness), this tape doesn't hurt my skin. Thanks, G-Daddy, for the suggestion!

I mentioned that we conference called the clinic regarding Ayden's oxygen saturations, but the purpose of the call was actually twofold. The second reason for the call was to confirm Ayden's catheterization (re)scheduling. Apparently, when Dr. Kavanaugh talked to Dr. Fish, Dr. Fish said that he would like to do an EP study at the same time that the catheterization was being done (two birds; one stone). He wants to double check that the ablation-- the one he performed on Ayden while Ayden was on ECMO-- took care of Ayden's arrhythmia issues. The original date for the catheterization was not a good time for Dr. Fish, so they rescheduled to accommodate his availability. As a result, Ayden's catheterization is NEXT WEEK! We will not have a Clinic visit on Monday; instead, we will meet with Dr. Fish and Dr. Janssen the day before the cath.

Please continue to pray for me!

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?

Chunky Monkey

Yesterday was yet another Clinic Monday, and Ayden was a rock star the whole appointment. The nurse that took Ayden's vitals (blood pressures, oxygen saturations, etc.) entertained our baby the entire time, so Ayden didn't cry at all. The nurse even took additional blood pressures to double check his work, but since it felt like playtime to Ayden, he wasn't at all phased. Checking Ayden's vitals is one of the most stressful aspects of Ayden's appointments, so I was overjoyed that he made it through them so easily!

The nurse also weighed Ayden. 5.35 kilos! He gained more than an ounce a day, which made up for the lack of weight gain from the previous week! Ayden no longer wears newborn diapers! He is officially a size 1!

Denise, the speech pathologist, also came to visit Ayden to see how he was progressing with the bottle. All of the silliness that he was doing with me at home (gumming the bottle, showing disinterest, etc.), he didn't do with her at all. He took 12ml and even gave her a smile. (He then did the same for me at home that afternoon-- took 12ml and smiled-- so that I didn't feel left out!) I appreciate all that Denise has done to encourage Ayden's feeding advancement; she really goes out of her way to care for our family!

I feel so blessed to have Ayden doing well at home!

I love my Cheez-Its!

Getting Sleepy

I had a big day!

30

That's how old I am, as of today.  That's right.  Thirty years ago today, I was born.  I'm sure some of you are thinking the wisdom I have imparted here could not come from someone so young, but it's true (if it didn't go off just now, you might want to take your sarcasm detector in for a tune up).  As is par for the course on such "milestone" birthdays, I have received numerous texts and calls congratulating me on how "old" I am.  The irony of each one of those messages?  I am younger than all of the people who sent them.  All.  In fact, almost all of them were born in an entirely different decade (including Allison).  Thus, in the end, I get the last laugh.

I have always found birthdays to be a bit . . . forced.  When I woke up this morning, I wasn't one year older than I was yesterday.  I was one day older.  Just like every day before today.  You become a year older over the course of a year, not a day.  My body aged just as much last night as it does every night.  In a very real sense, today is just another day, except that it just happens to be the anniversary of my birth.

All of that being said, birthdays, if they do nothing else, tend to produce reflection on one's life.  I am just as susceptible to that as anyone, I suppose.  While the number 30 doesn't really carry any more significance with me than did 29, there are some numbers that do carry some weight behind them.  I graduated high school 12 years ago.  College:  8 years.  Law school:  5.  I've now been married for 8 years.  All of that seems surreal to me.  Those are not insignificant periods of time.  None of those events, except for high school, seem all that long ago.

Yet, it is the smallest number that bears the most significance.  I have a son who is almost 3.5 months old.  As I look back on things, that fact is the hardest to grasp.  Not just today, but on several occasions since April 19.  There have been numerous times when I have been struck by how unfathomable it is that I have a son.  Not that I have a son with a congenital heart defect - though those moments are out there, too - but that I simply have a son.  The realities of parenthood have hit me harder than most, but somehow, even though I can see him and touch him, it doesn't seem possible he's mine.

When I started thinking about what I might want to do on my 30th birthday, having to spend it at home, away from all my friends and family but Allison, was not high on my list.  Nevertheless, I had a good day.  I received some generous gifts from our families.  I had the opportunity to do a little shopping for myself at some of my favorite stores.  Above all, though, friends family who are very important to me -Phil and Elise - took the time out of their day spent with their family to cook and deliver dinner for me.  What made the dinner even more special is that it came with a song:  Alex, you did a great job playing the birthday song for me on your guitar; I know you worked so hard on it.  Thank you.  And Max, thanks for all of the stuff that I would need if I was turning 70 instead of 30.  (E, the food was great, as always.  I'm saving the strawberry pie for breakfast tomorrow.)

***

Now, for a little bit of fun.  Since today's my birthday, I figured it's a perfect time to post some old pictures of me, to compare with some pictures of Ayden.

I'm sporting a look here we have seen many times in the last 3.5 months.  We don't have a perfect representation of it in a photo of Ayden, but these are pretty close.

These next two I like because they provide a nice symmetry.  In the first, there's my father and me.  When I first saw this about a month ago, I was struck by several things.  First, what were my parents thinking when they chose that outfit?  Second, Ayden sure does look a lot like me when I was that size.  Finally, Dad's profile and hair look all too familiar - it would seem Ayden and I can both attribute what we have to look forward to as we get older to him.  Thanks, Dad, on behalf of both of us.