Reality is merely an illusion, although a very persistent one.
--Albert Einstein
Albert was a very smart man, but I think he got this one wrong, at least as to the first part. Reality is no illusion. Should you start to think so, should you start to live in a world of supposition, speculation, and fantasy, reality will be sure to remind you of how real it actually is. This was made painfully aware to me on two separate occasions over the holiday weekend.
Neither instance had anything to do with Ayden. He continues to exceed even my most optimistic expectations (the pacing study result today did not change that). In many ways, though, that is really the point. As I have said before, he has done so well that the challenge is staying grounded in the reality of his illness and the challenges that he will continue to face. The statistics are (slightly) in his favor, but there is no guarantee as to which side of the statistical line he will ultimately fall (or stand) on. Anything can happen, at any time. At least two families have learned that. The hard way.
Yesterday afternoon I was in Ayden's room in the Acute Care section of the hospital. This area is for cardiac patients who no longer need intensive care but are not yet ready to go home, like Ayden. Being out of the PCCU does not mean that a child is out of danger. This was made painfully obvious yesterday. A mother came out of her child's room suddenly, screaming for someone to come help. She was frantic. One nurse went into the room. Then a second. Then a third. Someone went and retrieved the "crash cart" and placed it outside of the room (thankfully, that's where it stayed). Someone else started making phone calls. The mother continued to be inconsolable. I could not see her, but I could hear her easily from the other side of the pod. She repeated several things, over and over: "he looked so perfect", "what happened?", "how could this happen?", "please help him". The hospital staff never went into full on crisis mode - no "stat" call went out over the intercom - but the little one was taken back down to the PCCU.
I do not know how he is fairing, currently. I do know enough to appreciate that the outlook is certainly not as the family would prefer (a potentially gross understatement, I'm sure). About an hour later a family member of the child had a cell phone conversation directly outside of Ayden's room. I could not help but overhear some of what was said. I will not get into specifics, but it is sufficient to say that his heart is not doing something that it needs to be doing and, sadly, it's possible it may never be able to do so.
Needless to say, seeing this all go down was troubling. Hearing the terror in that mother's voice is something that will stick with me for a long time. I found myself just standing in the doorway to Ayden's room, trying to process what had just happened and what my own reactions to it were. Obviously, I could empathize with her. If you recall, Ayden had his own scary episode while he was in the NICU. The main difference? Allison and I did not learn of it until after the fact. Before we even knew what had happened, we knew that he had made it through safely. We were not in the room when it started. We did not have to see the nurses and doctors scramble to help him. We did not have to wonder whether he would make it. That mother had to go through all of those things, and completely out of the blue.
Empathy was eventually replaced with something much darker - I realized how grateful I was it wasn't Ayden who had suffered the breakdown. I know this is a completely natural reaction to have, and that there was no malice in it on my part, but I nevertheless immediately felt guilty for having thought it.
The final thought was the reality wake up call. There is nothing I can point to that explains why this happened to this other child instead of Ayden. As I said, there's nothing to guarantee that something similar won't happen. I cannot explain why Ayden is "safe" while that child is struggling.
The second instance from this weekend is even more sobering. I previously wrote about Ayden being the third HLHS baby born at Vanderbilt in three consecutive weeks. Despite being the last of the three to have surgery, it was repeatedly intimated that Ayden's recovery was outpacing that of the other two. I asked the Army to include those two other special children in their prayers for Ayden. I was told today (and have not verified) that last week an HLHS baby in the PCCU died. I know nothing more. I do not know if the child was one of Ayden's counterparts (I never knew their names and have heard nothing of their progress since we left the PCCU), or was one that was born later.
This produced the same wave of emotions and thoughts as what happened yesterday, except that I could not empathize with the nameless and faceless parents of that child. I can relate to the unmitigated fear they felt about the very real possibility their child's stay on this Earth would be short, but I can in no way comprehend what it is like to actually have that fear realized.
So, reality has made its presence felt, in a very direct way for those two families and indirectly for me. With all due respect to Albert, living a life on the basis that reality is an illusion is living a life on the basis of a delusion.
May 31, 2010
First Crush
Ayden's nurses have all been amazing in 6C, and we are so grateful to them all for the loving care they have given Ayden and for their willingness to put up with our incessant questions (and my more recent frustration and tears).
Recently, Ayden seems to have developed a love interest in his day nurse, Anna. I believe they have each other wrapped around each other's pinkies. (Perhaps Anna is more wrapped around his than vice versa, as are most of the nurses in the building. He is quite the ladies' man!) It was Anna who convinced me to try to give Ayden a bottle before putting a feeding tube back into his nose, and even though the feeding tube eventually went back in after less than 24 hours of trying with the bottle, I believe Ayden (and I) thrived from her encouragement. Now look at him! He's tube free!
If Ayden is crying, all Anna has to do is get close to his face, and he's hushed and fascinated. It's love.
Recently, Ayden seems to have developed a love interest in his day nurse, Anna. I believe they have each other wrapped around each other's pinkies. (Perhaps Anna is more wrapped around his than vice versa, as are most of the nurses in the building. He is quite the ladies' man!) It was Anna who convinced me to try to give Ayden a bottle before putting a feeding tube back into his nose, and even though the feeding tube eventually went back in after less than 24 hours of trying with the bottle, I believe Ayden (and I) thrived from her encouragement. Now look at him! He's tube free!
If Ayden is crying, all Anna has to do is get close to his face, and he's hushed and fascinated. It's love.
Once More, With Feeling (UPDATED)
12:55pm: In my haste to get some info up, I neglected to state how Ayden is doing. He went through the study just fine. He is already back up in his room (not still in the PCCU), woke up from the sedation, ate some lunch, and has now gone back to sleep. He looks and acts just the same as he did before the study. Thank God for that.
12:10pm: The pacing study is over. They were able to induce an SVT without much trouble, so they will be adding a second anti-SVT medication, then will redo study in a few days (Wednesday at the earliest, Thursday or Friday is more likely). This is a good thing to know (we don't want an SVT while he is home), but had they not been able to induce one, the cardiologist had already told us we'd be going home tomorrow. Oh, well. I told him a while back to let us know if they were thinking about sending him home too soon. I guess he's done that.
Be sure to scroll down (and onto the next page) to see a bunch of photos, plus a couple videos and some other information.
Once again, Ayden is scheduled to have his pacing study done today. Supposedly, he'll head down to the PCCU for it by noon. He isn't allowed to eat for several hours before it. I last fed him formula at 12:30 this morning, then some Pedialyte at 3:30 (which he hated). Needless to say, he is back into hungry baby mode. Needless to say, also, is that I haven't slept very much since 3:30. I really hope this thing actually happens today. I feel like I'm torturing the little guy.
As before, the doctors will try to induce an SVT (what's an SVT you ask? - see here). Ideally, they won't be able to, which will indicate that his current dose of anti-SVT medication is enough to prevent them, and we'll be that much closer to going home. If they can induce one, I can only assume that they will up his dose, wait probably about a week, and then do another pacing study to determine if that dosage is sufficient.
So, if you get the chance, please say a quick little prayer that they can't induce an SVT. I will post the outcome sometime later today.
12:10pm: The pacing study is over. They were able to induce an SVT without much trouble, so they will be adding a second anti-SVT medication, then will redo study in a few days (Wednesday at the earliest, Thursday or Friday is more likely). This is a good thing to know (we don't want an SVT while he is home), but had they not been able to induce one, the cardiologist had already told us we'd be going home tomorrow. Oh, well. I told him a while back to let us know if they were thinking about sending him home too soon. I guess he's done that.
Be sure to scroll down (and onto the next page) to see a bunch of photos, plus a couple videos and some other information.
Once again, Ayden is scheduled to have his pacing study done today. Supposedly, he'll head down to the PCCU for it by noon. He isn't allowed to eat for several hours before it. I last fed him formula at 12:30 this morning, then some Pedialyte at 3:30 (which he hated). Needless to say, he is back into hungry baby mode. Needless to say, also, is that I haven't slept very much since 3:30. I really hope this thing actually happens today. I feel like I'm torturing the little guy.
As before, the doctors will try to induce an SVT (what's an SVT you ask? - see here). Ideally, they won't be able to, which will indicate that his current dose of anti-SVT medication is enough to prevent them, and we'll be that much closer to going home. If they can induce one, I can only assume that they will up his dose, wait probably about a week, and then do another pacing study to determine if that dosage is sufficient.
So, if you get the chance, please say a quick little prayer that they can't induce an SVT. I will post the outcome sometime later today.
May 30, 2010
Back to Basics
Ayden has taken one more step towards looking like a "normal" baby. As you've seen in previous posts, his feeding tube was briefly out, then was put back in. It's out again (and no blood on the end this time). And this time, it's because the doctors are hoping he no longer needs it (it came out last week because we knew he was not going to be fed for at least 24 hours and wanted to give him a break from it).
So far, God has only allowed him to take forward steps since his surgery. There have been no backwards steps - i.e., nothing that has been removed or done with the thought was he was ready has been put back in or undone. This is another one of those steps that might prove to be have been made too soon, but we are praying that he's ready to take everything he needs (both food and medicine) by mouth from here on out and that he's truly capable of going home without any kind of feeding tube.
So far, God has only allowed him to take forward steps since his surgery. There have been no backwards steps - i.e., nothing that has been removed or done with the thought was he was ready has been put back in or undone. This is another one of those steps that might prove to be have been made too soon, but we are praying that he's ready to take everything he needs (both food and medicine) by mouth from here on out and that he's truly capable of going home without any kind of feeding tube.
May 29, 2010
Stop... Bottle Time
Now that I've put up a whole bunch of pictures, let's get caught up on Ayden's progress. Several things have occurred since you last really heard from one of us on Monday (besides the pacing study not happening).
The more observant members of our readership might have noticed that some of the pictures I posted featured Ayden sans feeding tube. On Monday the decision was made to give him a break from it. He wasn't going to be getting any food until sometime the next day (because of the scheduled pacing study), plus he'd had a tube up that nostril for pushing three weeks, if not longer. If the feeding tube was the cause of the blood in his stomach, hopefully taking it out would help with that, as well (it turned out the end of the tube was covered in blood). At any rate, the pacing study didn't happen Tuesday, then the GI folks said to start feeding him again. Allison and his nurse, Anna, decided to see what he would take from the bottle before the feeding tube went back in. He took all of it.
Since then, he has done exceedingly well with eating from the bottle. He is supposed to have 55ml every 3 hours. He typically gets anywhere from 52-59 at a sitting. The feeding tube is back in (right nostril this time), just in case it's needed to make up any difference that he didn't get from the bottle. We've had to use it very sparingly over the last few days. He is even taking all of his medicine directly from the syringe, rather than into the feeding tube. For a little one that has had the type of surgery Ayden's had, all of this is really awesome and puts him in a small minority (if he goes home without a feeding tube, my understanding is that he would be the first hypoplast from Vanderbilt to do so in almost two years). We are so proud of him and so thankful to God for this blessing.
After the jump is some video evidence of his bottle feeding prowess.
The more observant members of our readership might have noticed that some of the pictures I posted featured Ayden sans feeding tube. On Monday the decision was made to give him a break from it. He wasn't going to be getting any food until sometime the next day (because of the scheduled pacing study), plus he'd had a tube up that nostril for pushing three weeks, if not longer. If the feeding tube was the cause of the blood in his stomach, hopefully taking it out would help with that, as well (it turned out the end of the tube was covered in blood). At any rate, the pacing study didn't happen Tuesday, then the GI folks said to start feeding him again. Allison and his nurse, Anna, decided to see what he would take from the bottle before the feeding tube went back in. He took all of it.
Since then, he has done exceedingly well with eating from the bottle. He is supposed to have 55ml every 3 hours. He typically gets anywhere from 52-59 at a sitting. The feeding tube is back in (right nostril this time), just in case it's needed to make up any difference that he didn't get from the bottle. We've had to use it very sparingly over the last few days. He is even taking all of his medicine directly from the syringe, rather than into the feeding tube. For a little one that has had the type of surgery Ayden's had, all of this is really awesome and puts him in a small minority (if he goes home without a feeding tube, my understanding is that he would be the first hypoplast from Vanderbilt to do so in almost two years). We are so proud of him and so thankful to God for this blessing.
After the jump is some video evidence of his bottle feeding prowess.
Picture-palooza, Pt. 4
Some of the pictures Allison has taken with her cell phone over the weeks (more after the break, with my personal favorite being the last one)...
May 28, 2010
Picture-palooza, Pt. 2
The following are waiting room pictures from labor and delivery and the NICU. Pictured are both sets of Ayden's grandparents, a set of great-grandparents, and our close friends, Phil & Elise. On the day that Ayden was born, Elise spent a considerable amount of time texting to update many of you!
May 26, 2010
Pacing Study. (UPDATEDx2)
10:50am: And.....just kidding. No pacing study today. The PCCU is indeed full. Now, it'll probably happen next week. Argh.
10:35am: I may have spoken (typed) too soon. There apparently isn't an empty room in the PCCU for Ayden to occupy while they do the pacing study, so this may not happen today.
Sometime this morning Ayden will be taken back down to the PCCU for his pacing study (what I have sometimes referred to as a "wire study"). Again, the doctors will attempt to induce an SVT so that they can map the electrical impulses in Ayden's heart, with the ultimate goal being to locate where the abnormal impulse is so that it can eventually be treated (probably via cardiac ablation).
He will be sedated during this process and will have to remain in the PCCU for most of the day today while the sedative wears off.
10:35am: I may have spoken (typed) too soon. There apparently isn't an empty room in the PCCU for Ayden to occupy while they do the pacing study, so this may not happen today.
Sometime this morning Ayden will be taken back down to the PCCU for his pacing study (what I have sometimes referred to as a "wire study"). Again, the doctors will attempt to induce an SVT so that they can map the electrical impulses in Ayden's heart, with the ultimate goal being to locate where the abnormal impulse is so that it can eventually be treated (probably via cardiac ablation).
He will be sedated during this process and will have to remain in the PCCU for most of the day today while the sedative wears off.
May 24, 2010
Our Little Clemson Monk
Today was a good day, and the doctors decided to increase his calories on his feed from 20 to 24. Now, this is where we have always been caught in the past. Every time they increase his calories (the goal is 30), Ayden experiences some sort of "episode." It would be really awesome if he slept through the night with no incident worth noting... or worth stopping his feed, x-raying him, etc.
In addition to the feeds that he receives through the feeding tube, we practice bottle feeding three times a day. Whatever he takes from the bottle is subtracted from the amount given through the feeding tube. His 10AM bottle feed is always uneventful because it is too closely backed up to his overnight continuous feeds, so he's never hungry then. His 2PM bottle feed usually gets a little better, though today he went considerably down from where he was-- 8ml. However, at his 6PM bottle feed, he took 22 ml! WOW! To give you a frame of reference, Ayden needs to take 50ml at each of his daytime bolus feeds.
For clarity purposes, when we say that Ayden's stools are positive for blood, we are NOT saying that one can actually SEE blood in the stool. Only once has that occurred. The nurses take a small amount of Ayden's poop and place that sample on a small card. Then they drop some sort of liquid on the sample, and they can tell whether or not the stool is positive for blood. (It's all very CSI.)
The doctors have determined that Ayden may have experienced a protein allergy that caused an irritation in his GI system. As a result, the GI specialists changed him from the previous formula to the one that he has been on since May 19th. This formula is not as difficult for Ayden's stomach to break down, and it should allow for his system to heal. In the meantime, his stools may continue to test positive for blood for weeks. Though this is somewhat concerning for me, the doctors do not seem at all phased. I have to trust. (Trusting is something that I keep telling myself I just have to do. Otherwise, I doubt and worry about everything.)
By the way, this more basic formula smells like Cheez-Its, so I often call him "Cheez-It Boy." When we first started bottle feeding him on this formula, we added a small amount of vanilla to the formula to get him to eat it. His nurse, Havilah, asked him, "Want some vanilla Cheez-Its?" He loved the combination!
One more thing: Ayden has been smiling in his sleep for weeks now, but today... today he was fully alert as his daddy walked up to his bed. He gave his daddy a bunch of big smiles! Ayden has been a "Daddy's Boy" since he was in the womb, and Bryan has been giving him pep talks almost every night since he was born. Most of the time, Ayden listens intently and follows Bryan's encouraging words. I love that they have such a sweet bond. (I got a smile later this evening! Too cool!)
Happy Five Week Birthday, Ayden! We love you, Cheez-It Boy!
(His nurse tonight, Sarah, says, "He looks like a Cheez-It with that outfit on.")
May 22, 2010
And..... he's eating again.
The second x-ray turned up clear, so Ayden took his practice food from the bottle (about 13ml) and is now back on his feeds. We shall see what happens. This whole issue - whether he'll be able to eat without a tube, what formula he needs, the bloody stools, the spitting up, etc. - is basically the only thing that is keeping him (and us) in the hospital. So, please continue to pray that this gets resolved, at the appropriate time.
I consider that last part to be more important the more I think about why we are still here. I certainly hope this isn't the case, but maybe there is something coming down the pike that would be much more dangerous if he were at home when it happened. In other words, maybe there's a reason - one totally unrelated to this current issue and one we don't yet know anything about - he's still here. Maybe this current problem exists solely to keep the doctors from sending him home. Maybe God has intervened in a way that we cannot yet see or understand. Maybe He is actually protecting Ayden right now. Again, I hope there's nothing coming. I guess all I'm trying to say is that I'm doing my best to realize that what I want to happen (and when) may not ultimately be what's best for Ayden.
I consider that last part to be more important the more I think about why we are still here. I certainly hope this isn't the case, but maybe there is something coming down the pike that would be much more dangerous if he were at home when it happened. In other words, maybe there's a reason - one totally unrelated to this current issue and one we don't yet know anything about - he's still here. Maybe this current problem exists solely to keep the doctors from sending him home. Maybe God has intervened in a way that we cannot yet see or understand. Maybe He is actually protecting Ayden right now. Again, I hope there's nothing coming. I guess all I'm trying to say is that I'm doing my best to realize that what I want to happen (and when) may not ultimately be what's best for Ayden.
Requesting Prayer
Bryan just called me. They can't say for certain what they see in the x-ray, so they want to wait to make any decisions pending an afternoon x-ray. They could just be seeing stool making its way through the intestinal system; in which case, they should see that movement in the next x-ray. If what they are seeing is air, that's not good. That could potentially be NEC, necrotizing enterocolitis, which is very scary. On the flip side, Ayden's tummy is still nice and soft, and he doesn't seem to be acting any differently (other than just being hungry from the held feeds). This is one of those times when you try not to worry because you know that worrying does nothing, so you pray. Please pray.
Thrill Seeking? Not as a Parent
I was always sort of a daredevil growing up. Granted, I was (am) a perfectionist, made good grades, participated in a lot of school activities, blah, blah…
But I was also the one that, at a senior retreat, jumped from a tree into a lake… without knowing the depth or the dangers of the water that I was jumping into. (My daddy knew about this before I even told him, and I still can’t figure that one out.)
Looking back on some of those teenage/young adult experiences, I see that I was lacking some serious common sense in my decision-making. I have a tendency to be a bit more calculating in my risky adventures these days. For instance, I went on a Thrill Seekers trip with rising freshmen last summer. (No, taking a trip with 9th graders is not the “risk” that I speak of.) We went to amusement parks and rode all of the roller coasters, and we experienced the rapids of Niagara Falls. Those kids will tell you that I wasn’t afraid to try it all and that I love the excitement of those sorts of activities and the fun of being with all of them. (Go, Thrill Seeker High! Maverick is still my favorite coaster!)
I don’t, however, like the roller coaster of being a parent. I AM afraid of the spirals, of the downward slopes, of the unknown depths and dangers. I want to KNOW that there won’t be any scary surprises.
Last night Bryan stayed with Ayden. It was sort of a rough night. He spit up five times, and the last one had a couple of drops of blood in it. He had three stools positive for blood. (By the time this post will be published, he will have had five in a row.) True to form, the doctors have held his feeds and gotten an x-ray. We are waiting on radiology to read the x-ray now. Ayden is sucking hard on the pacifier because he’s hungry… again.
I left the hospital last night feeling pretty good about things… While I am always trying to remain cautiously optimistic, I was thinking that we were headed toward home. I don’t want to make things sound all doomsday (because it’s not; Ayden has done super well), but Ayden has to be able to eat to go home. And yesterday, he WAS eating. They had started him on a more “elemental” formula to help with any healing that may have been associated with the bloody stools. He seemed to be tolerating that fine. In addition, HE PASSED HIS SWALLOW STUDY! That is a huge success because it means that he doesn’t suck fluid into his lungs when he is given a bottle. We were able to increase his bottle feed from 5ml to 10ml with the expectation that that would rise every day to a full feed with a bottle. Yesterday he took 10ml at his 2PM feed and 13ml at his 6PM feed. (The rest of his feeds he still gets through the feeding tube in his nose.)
God has done mighty things in Ayden’s life, and He continues to work wonders. I am praying for peace over his little body as the doctors and nurses work to figure this out… so that we can take him home.
But I was also the one that, at a senior retreat, jumped from a tree into a lake… without knowing the depth or the dangers of the water that I was jumping into. (My daddy knew about this before I even told him, and I still can’t figure that one out.)
Looking back on some of those teenage/young adult experiences, I see that I was lacking some serious common sense in my decision-making. I have a tendency to be a bit more calculating in my risky adventures these days. For instance, I went on a Thrill Seekers trip with rising freshmen last summer. (No, taking a trip with 9th graders is not the “risk” that I speak of.) We went to amusement parks and rode all of the roller coasters, and we experienced the rapids of Niagara Falls. Those kids will tell you that I wasn’t afraid to try it all and that I love the excitement of those sorts of activities and the fun of being with all of them. (Go, Thrill Seeker High! Maverick is still my favorite coaster!)
Last night Bryan stayed with Ayden. It was sort of a rough night. He spit up five times, and the last one had a couple of drops of blood in it. He had three stools positive for blood. (By the time this post will be published, he will have had five in a row.) True to form, the doctors have held his feeds and gotten an x-ray. We are waiting on radiology to read the x-ray now. Ayden is sucking hard on the pacifier because he’s hungry… again.
I left the hospital last night feeling pretty good about things… While I am always trying to remain cautiously optimistic, I was thinking that we were headed toward home. I don’t want to make things sound all doomsday (because it’s not; Ayden has done super well), but Ayden has to be able to eat to go home. And yesterday, he WAS eating. They had started him on a more “elemental” formula to help with any healing that may have been associated with the bloody stools. He seemed to be tolerating that fine. In addition, HE PASSED HIS SWALLOW STUDY! That is a huge success because it means that he doesn’t suck fluid into his lungs when he is given a bottle. We were able to increase his bottle feed from 5ml to 10ml with the expectation that that would rise every day to a full feed with a bottle. Yesterday he took 10ml at his 2PM feed and 13ml at his 6PM feed. (The rest of his feeds he still gets through the feeding tube in his nose.)
God has done mighty things in Ayden’s life, and He continues to work wonders. I am praying for peace over his little body as the doctors and nurses work to figure this out… so that we can take him home.
Family Photography by Jessica Power
Click on the following link to view the photo slideshow that Jessica created:
Baby Ayden
Thank you, Jessica, for taking such beautiful pictures! Congratulations on your engagement!
My favorite pictures that Jess took can be seen below. In the third picture, is Ayden kissing me, or does he already not want his mama to kiss on him?!?! :)
OUR FAMILY
Baby Ayden
Thank you, Jessica, for taking such beautiful pictures! Congratulations on your engagement!
My favorite pictures that Jess took can be seen below. In the third picture, is Ayden kissing me, or does he already not want his mama to kiss on him?!?! :)
OUR FAMILY
(Our First Family Photo)