Another Big Step; A Call to Arms

Ayden's breathing tube was taken out this afternoon. As you can see, he is starting to look like a normal baby again.

This is another important step in his recovery, not only in relation to his surgery, but also because he had been on a breathing tube since last Wednesday. Hopefully he will be ready for his pacifier again soon. If you are wondering, the tube heading up his left nostril is how he is going to be fed now - i.e., no more IV fluids. He will finally get to use some of that milk that Mom has spent so much time pumping over the last 10+ days. The tube actually goes all the way into his intestines, rather than his stomach. His tummy has never had food in it, so they don't want to run the risk of him puking it all up the first time (I guess they are saving that for us when we finally get to take him home). As with everything else, it's possible he'll tell us this was too soon and we'll need to take a step back, so please continue to pray for him. He still has many more steps to go.

I have more pictures and a video (which is more interesting to listen to than to watch). I want to briefly mention something much more important, so I've put them after the jump below.

***

A Call to Arms

Ayden has two fellow residents here in the PCCU who have the same congenital heart defect (Ayden was the third born at Vandy in three consecutive weeks with HLHS). Those two babies have also recently had their first surgery. I do not know which ones they are, I have not met their parents, and I do not know anything specific about their status. I have, however, heard rumblings that Ayden is faring better in his recovery than both of them, even though he is not as far removed from his surgery. I do not know what kind of support network these children, or their parents, have, though I would be surprised if it is as deep and as far-reaching as Ayden's.

I do not know if they have an Army praying for them. I know that I can ensure that they do. I cannot give you their names (I don't know them), but I hereby request that all of Ayden's Army also volunteer to be warriors for these other two little ones. So, any time you say a prayer for Ayden, please also think about them and their families. I know what their parents are going through. I know that I welcome every prayer that someone is willing to say. I'm sure those parents would, too. Let's see if we can have three babies come out on the other side of this huge challenge, not just one.

His Chest is Closed!

Dr. Bichell came in this afternoon and closed up Ayden's chest (they did this is in his room - how crazy is that?).  We have been told that Ayden handled the ordeal exceptionally well.  Apparently, they only had to give him pain medication and nothing else.  Thank you, God!

They will continue to monitor his blood pressure (going down is bad), oxygen level (going down is bad), and right atrial pressure (going up is bad).  Got all that?  These issues could indicate swelling in his chest, which would put increased (and unwanted) pressure on his heart, which might require him to be opened back up.  As long as there are no problems with those, he'll move on to the next step - getting rid of that annoying breathing tube - possibly tomorrow.  So, tonight is a very important night.  He doesn't need to do anything extra.  He just needs to maintain.

So you can see the difference a day makes, I'll put some (new) before (still view at your own risk) and after pictures after the jump.  You'll notice he's no longer sumo wrestler baby (he's been peeing a lot).

Two Days After Surgery

Praises all around! Ayden is doing well in PCCU!

The surgeon, Dr. Bichell, says that Ayden's chest can be sewn up, though he is not sure if he can do it today due to the other procedures/surgeries scheduled. If he doesn't get to it today, he will do it tomorrow.

Since Ayden is being so pumped full of fluids, his body is very swollen. They have been hoping that the amount of urine that he produces would be more than the amount of fluids he is receiving. That is finally happening, and already he is starting to look better.

Yesterday we got to see Ayden's blue eyes for the first time since last Wednesday. He can't quite move his head very much, so he moves his eyes from side-to-side to follow voices. Though he is on a mild sedative, he also moves his limbs and body, which they say is good for his lungs.

Test results all look good, with the exception of his PH, but they know why that is happening, and they are not concerned.

Bryan and I put up the signs on the door to his new room, and the nurses agree that his room is best decorated. Thanks again to the BA students for helping make his room so personal and joyful. I still enjoy reading the signs that you made!

Bryan and I feel really good about where Ayden is right now. He is one step closer to getting better and coming home. Though we have weeks ahead of us, we are so thankful for today.

More Thanks and More Pictures

Because I posted so many surgery updates yesterday, my earlier post thanking all of the wonderful people Ayden had met so far got pushed off the front page too quickly.  The thanks they deserve bears repeating, so I will reiterate myself for a bit, while adding in a few extra folks.  After all that, clicking on the "read more" link below will take you to the full post.  There you will find pictures of Ayden that I took today.  Be warned: he is not covered with a blanket in these pictures, so you will see all of the tubes going in and out of him, how swollen he is (from the shoulders up he looks like a sumo wrestler), and the dressing that is covering his still open chest.  They are not the cute little baby pictures that you have seen to this point, so view at your own risk.

But first, the thanks.  Special thanks goes out to:

• All of his doctors and nurses, for taking such great care of him.  Sarah got him through those first couple nights, Katrina helped him survive a couple rough days, Kandy (who also prayed over him) and Kelly kept him stable over the weekend, English pounded the pavement for him in ways that we couldn't, and, of course, Dr. Bichell brought him through the surgery and continues to monitor his status.  As I said before, these individuals, and others, went above and beyond the scope of their jobs to take care of Ayden.
• Julie, our social worker, for taking such great care of us.  She kept me in line about calling the Ronald McDonald House when I had 5,135 other things on my mind (I counted).  She also advocated for Ayden in ways that we could not.
• Our parents, for coming from up to 14 hours away to support us, feed us, transport us, clothe us, and just be with us as we go through this.  Despite being out of town, they were all here hours before Ayden was born.
• Everyone at Grace Chapel, from Jim and Jonathan coming to pray for him to our Cheers group just coming to spend time with us yesterday (on top of all the praying they have been doing for many months now), to everyone else who has expressed their support, through prayer or otherwise.  I know there was a group that was praying him through his surgery yesterday.  Thank you.
• Phil and Elise deserve separate mention from the Grace Chapel group.  One or the both of them has been here almost every day since Allison went into labor.  Elise was here before six that morning after not having gone to bed until after one.  We love you guys.  Y'all are awesome.
• All of our friends and family who have called, texted, or visited over the last week.  We are grateful for your love, support, and prayers.
• All of the other members of Ayden's Army - including everyone at BA - who have been praying for him, some of whom Allison and I don't even know.

We remain eternally humbled by and grateful to all of you (and anyone who I inadvertently neglected to mention).  Thank you.  Again.

***

Now, on to the pictures.

Hanging in the PCCU

Ayden has now been moved to his new home in the PCCU (I am hanging out in the back of his room as I type this - this will be my bedroom for the evening).  It is quite different from his "old" one down in the NICU.  For starters, it is considerably larger (he has his own bathroom!).  Based on all of the additional equipment in here, I suppose it has to be.

Before, there were four IV thingees (I've been in the hospital for 9 days now, so I'm starting to pick up on all the fancy medical lingo).  Now there's about 12, with what seems like the capacity for 50.  There is an astounding amount of wires, plugs, monitors, etc., and he isn't even hooked up to the ECMO machine, an apparently oversized apparatus that would breath for him and circulate his blood.  This means there are more numbers to fret over and more things to beep.  The two drainage lines coming out of his chest are hooked up to something that constantly sounds like a very large fish tank.

By all accounts, Ayden seems to be doing okay (although, to be honest, he looks terrible - I'll get a picture up tomorrow for those who are willing to look).  They are constantly running tests on various things and working to make the necessary changes so they can get the results they want.  This process will likely continue throughout the night.

This is all very stressful.  As I wrote earlier, he may have made it through the surgery without any apparent complications, but he is far from out of the woods.  Obviously, his little body has gone through, and is continuing to go through, an incredibly traumatic experience.  Over the next several days, the hope is that he will begin to heal and to adjust, without any major speed bumps along the way.  A complete recovery is by no means a foregone conclusion.  So, again, please don't stop praying for God to look after him and to get him all the way through to the end.  We are one step closer to getting to take our baby boy home, but we aren't there yet.

One thing he has going for him?  His PCCU nurse this first night - Kelly - is a Clemson grad.  Interesting, right?

Thankfully, this was NOT Ayden's surgeon

Update #4

The surgery is done!!!!

I just talked to surgeon.  He said that the surgery was "routine," that it went "by the book," so much so that he considered closing Ayden's chest up, which they normally don't do.  Ultimately, he decided to play it safe and leave him open.

Ayden apparently had one episode of increased heart rate, before they got started (this has happened once before).  The surgeon said that, as he is in a weak state right now, it could rear its head again tonight.  So, that is one thing to give us pause.

They have to move him over to the portable bed and then get him situated up in his room.  It will probably be another two hours before we get to see him.

A huge thanks to everyone who has been praying him through the surgery.  God is so good.  Please don't stop, though.  This was a huge hurdle, but the surgery doesn't get him all the way over it.  He still has a big part of it in front of him, over the next several days/weeks.

Update #3

They are in the final stage of the surgery.  The nurse said that this may take quite a while, as they make sure that everything is set, that nothing is bleeding, etc.  It'll be at least a couple more hours.

Update #2

Ayden is now on bypass and they are "starting the repair."  The estimate to completion is 4-5 hours from now - i.e., 8 or 9 this evening.  I expect to get another update in about 2 hours.

Praises

They got Ayden's IV lines in. Doing so took them awhile, but that was to be expected since he is an infant.

We got into Ronald McDonald House. Bryan is checking in now. I know that many of you were praying for that specifically, so we appreciate your prayers! Hopefully, we will rest more often and better.

Since I have the time....

I want to pass along a special thanks to all of the wonderful people in the NICU.  Their compassion for not only Ayden, but for Allison and I, was amazing.  They made his time there as smooth as it could possibly be.

His doctors and nurses - English, Katrina (pictured below), Sarah, Kandy, Kelly, Jan, and others - and Julie, our social worker, were all understanding, helpful, caring, and loving.  Ayden, and his parents, could not have made it through the last week without them.  They answered all of our questions, listened to all of our fears, understood all of our complaints.  They loved on and prayed for all three of us in ways that went above and beyond their job descriptions.  I know credit is due to some of them for the fact that he is in surgery right now, rather than still waiting.  This truly is an amazing place, filled with amazing people.  We are eternally grateful, no matter the outcome of today.  I can only hope that his doctors and nurses in the PCCU are as amazing as the ones he had in the NICU.

I really cannot hope to fully express my gratitude, so I'll simply say this:  thank you.

He's off!

Allison and I just rode the elevator down to the OR floor with Ayden.  When we got off, he went right through one set of double doors to surgery, we went left through another set to the waiting area.  I will provide updates as I get them.  The first one probably won't come for at least an hour.

Thank you, Adyen's Army, for all of the prayers.  Please keep it up.  He has now officially started the toughest part of his journey.

Congratulations, James!

When school begins in August, we ask the students to create a "what inspires me" notecard. The students put Bible verses, pictures of family or friends, athletes or other famous people, etc. on their cards. I also created one to show my classes, and depicted on my card is a collage representation of my brother, James.

James has had his own share of life struggles, and as a result, he has a wonderful ministry. He takes advantage of every moment that life has to offer, and he has accomplished and experienced amazing things. In May, James will graduate with his Masters from Auburn University. I am so proud of my little brother, and so, to congratulate you, James, I am posting some pictures of you with Ayden and his Auburn hat. Yes, you beat us to it, and our baby boy has yet to sport the Clemson attire! I love you, James! You are an inspiration to me!

Another Surgery Update

Allison and I just finished talking with the surgeon.  We had lots of questions for him about the dangers of waiting longer to do the surgery than what we had been told to expect.  Our discussion with him was very helpful and very productive and his answers were soothing to both of us.  Aside from saying that waiting more days provides more time for a problem to occur, he was not concerned about the wait having any long term effects (which is what we were really worried about).  He told us that there are certain factors that can increase the riskiness of the surgery - i.e., the chances that the patient would not survive.  Ayden apparently does not have any of them. Essentially, if he is not worried about a few extra days, then I am not worried about a few extra days (other than the irrational worrying of which no parent can completely rid himself).

With all of that being said, his surgery schedule has changed.  Again.  He is now the second case......tomorrow.  As long as nothing changes (and it still could between now and then), they will come to get him out of his NICU room at around noon tomorrow.  From the start of pre-op to the end of post-op will be about six hours (the actual surgery itself will take up about two of those hours).  We will get to see him before he leaves his NICU room, but he will be out of sight until a couple hours after he has been moved into his new room.

I know all of that waiting in between will be unbearable.  I have no idea what I am going to do to occupy myself tomorrow afternoon.  Sitting in his room, as I am right now, and being able to see all of his numbers and how they are (or are not) changing is stressful enough (watching those numbers is incredibly addicting - you just can't not do it).  I can't imagine what it will be like tomorrow when I don't have anything to look at to assuage my concerns.  Plus, I won't even be able to see him.

I am terrified.  I am excited.  I guess these mixed emotions will never go away.

Hopefully I look good in grey.

For Ayden's Army- Surgery & Updates

I’ll start with the information that you all probably most want to know about: surgery. Ayden has been bumped from today’s surgery schedule. He has been placed second for Thursday’s schedule. I have mixed emotions about this for a variety of reasons.

I will first tell you that Ayden may have had an infection earlier in the week. They took a culture that showed some growth. However, he has been on antibiotics for days now, so they seemed not too terribly concerned about it. Of course, one does not want a major surgery to occur if the baby already has an infection, so we were a little edgy about that. Bryan and I assisted the nurse in a catheterization yesterday to get a urine sample for another culture. That was quite the experience for Bryan and me. Bryan might have turned a few shades of purple, and in the end, we all got peed on. Who could blame Ayden?!?! Those results for the culture will probably not come back until tomorrow, but, like I said, the doctors do not seem at all worried about the infection continuing to be an issue.

One of the things that has been bothering me has been the timing of the surgery. For months we were told that the first surgery needed to occur within 2-5 days of birth. Here we are at day 7, and Ayden still has not had surgery. I told the doctor and nurse that, while I trusted their expertise, I was curious as to why the discrepancy existed. While I still haven’t gotten an answer to my question (they said that they would get one for me), I know that they would take him into surgery if the situation warranted. The bonus to his waiting is that they must feel he is stable enough for the wait. And wait we will. God is teaching me a lot about patience and trust.

In preparation for the possible surgery, Kandy, Ayden’s day nurse for two days now, asked me if she and I could pray. Kandy placed my hand on Ayden’s chest, and then she placed her hand on mine. She prayed over the baby, and in this really sweet moment, I felt so much joy in hearing her lift her voice for our son. I was reminded of God’s providence in providing all of the right people in our son’s life, and she is certainly among them.

Shortly following Kandy’s prayer, Ayden was prayed over yet again by Jim and Jonathan from our church, Grace Chapel. Bryan, Jim, Jonathan, Kandy, and I joined hands around Ayden, and heaven’s doors were knocked on once more for our sweet baby. I know that Ayden has an army (“Ayden’s Army,” as my daddy calls them) of prayer soldiers crying out to our Mighty God, and I want you to know that your prayers provide so much assurance and peace for our family.

Some quick updates on Ayden: His IV lines in his arms were leaking, so they put one in his head. I am actually glad for this because it means that his arms are a bit more free to move. Plus, those bruises can heal. This morning Ayden’s lungs sounded better. His skin coloring is also better. He was looking a little yellow, but his peachy color is returning. The nurses have Ayden sedated, but he can hear our voices and feel our touch; he responds to both, just as he did in the womb. He especially responds to his daddy. They used to have to give him an additional sedation to do his care, but he no longer requires that. He has been a lot more cooperative, and the nurses and I can do things like change his diaper without him getting all agitated. We are happy about all of this progress. Something that you can pray for is that Ayden’s oxygen levels to his head have been a bit low, so we would like to see those climb a bit. Of course, please continue to pray about surgery.

As with most babies, there is much speculation over who Ayden “looks like.” The consensus seems to be that Ayden looks like his daddy, which is fine with me since I think Bryan is quite handsome. I’ll admit that I don’t see the resemblance, not to Bryan or to me. I WILL say that I have totally fallen in love with his little nose. He’s too cute.

I have been reading to Ayden at night, and yesterday my mama read to Ayden. She totally made me laugh during the entire process, as she adds commentary along the way. Bryan took video of her reading (Shh! Don’t tell her!), but I won’t embarrass her by posting the video. Here are pictures instead.

Ayden has the coolest room in the NICU!

The signs you see below add brightness to our day, and we have many to thank for that daily encouragement! Jennifer, thank you for organizing the making of Ayden's signs! Elise, thanks for carting the signs to and from and for helping to put them on the doors with all that blue tape! Christa, we appreciate you taking time to laminate them all! Margot, Brooke, Alex, and BA 7th graders, you did an incredible job creating these amazing signs! We love the color, the messages, the creativity, and the fun of them all! (Joe & B1, Ayden is quite taken with his nickname, Chretian de Troyes Loherangrin the Swan Knight!)

Even more (sobering) pictures.

Preparation for the Marathon

We went to doctor’s appointments and spoke with doctors. We saw diagrams and pictures. We read articles. For months, we talked and talked and talked about our son. None of that prepares one for what we have encountered this past week... I was not prepared to walk in on my baby boy, a child who had once been very active and noisy, lying limp on the table like a rag doll. I wasn’t prepared for observing Ayden arch his back and tighten his fists and feet because he had discovered he had a breathing tube. After surgery, I won’t be prepared to see him with his chest open fighting for his life. Nothing can prepare you for this life we are currently living.

For the past few days, I have been stuck in my own “shades of grey.” I have been positioned somewhere between delirium and awake. Some of that is medication. Some of it is frustration and sadness. A lot of it is exhaustion. Our mornings have started at 5AM, only to end between midnight and 1:00. I know that you haven’t heard from me, and I apologize. Bryan has acted as our family voice, while I have worked to slowly recover.

I think about all of the people that have been here along the way and how this would be unbearable without their help. In the hospital, the countless nurses and doctors have aided us through the physical and emotional pains of the past few days. I will tell you that having a baby through C-section is very humbling; one is not at her best and certainly not at her prettiest. I am so thankful for Emily, Melissa, and Annie, all nurses who served us over the past few days. I am thankful for Sarah and for Katrina, one who showed me compassion in allowing me to hold my son and one for spending an entire day saving my son’s life. I am thankful for Dr. Graves for operating so beautifully on me (and I did NOT want a C-section!) and for Dr. Kavanaugh for having loved on Ayden and his heart even before he was born.

I am grateful for those that have visited, called, emailed, texted, sent flowers, and posted to the blog. We are sorry if we have missed you or haven’t gotten back to everyone. Know that all of the support has meant a great deal to us. You all are propelling us into the next day.

Note: To those of you that made signs for Ayden-- They are in the process of being laminated and will hopefully be placed at his room as soon as possible. When that is done, we will post pictures so that you can see. Ayden knows when he is being loved on, and I know that an environment of encouragement will be just the thing for his progress! Thank you!

Both sets of parents and my grandparents have been here as well. They have been an important part of taking care of us and taking care of Ayden. They have run errands for us (buying toothpaste, blankets, etc.), and they have treated us with surprises, such as framed pictures of our precious son. My brother came from Auburn and has spent time with us in the evenings. He has taken pictures of Ayden and has had dinners with Bryan. We are blessed to have our families for the marathon ahead.

I also want to thank Elise, Phil, Max, and Alex. This family of four have been prayer warriors for our son and for us. They have also served us in countless ways: washing Ayden’s blankets, socks, and hats; washing our clothes; communicating with our friends through text, etc.; bringing Ayden a balloon, a bear blanket, and a book; reading to Ayden; visiting us and comforting and helping our family. We are so blessed to have them in our lives and would have had a much more difficult week had it not been for their love and support.

I want to say more, but it’s already 11:30. Thank you for your prayers and love.

Ayden is on the schedule!

Ayden is officially on the surgery schedule. As of right now, his will be the second surgery on Monday. It will start at some point after the first one is over, so I don't have a specific time. As I've mentioned, being on the schedule is not a guarantee that it will actually happen then. The cardiac surgery schedule is in a constant state of flux. An emergency could come in at any time, a heart could become available for a transplant patient, another little baby could take a turn for the worse - any of these events could bump him from the schedule.

But for now, Monday is (again) the day.

Taking a Ride on the Roller Coaster

Step right up and get your ticket...

The last couple days have, not surprisingly, been a roller coaster ride. Tuesday went smooth. Wednesday afternoon was rough. Late Wednesday was great. Early Thursday was bad. Then okay. Then less okay. Then back to okay. Etc., etc., etc.

Adyen recovered nicely from his "minor setback" yesterday. He was doing so well that they decided to wean him off of the paralytic and the sedative. Eventually, he started to wake up. The first time he did was earlier this morning. Unfortunately, once he woke up he realized he had a breathing tube down his throat. And he didn't like it. So, in his little baby mind, the best thing to do is to fight it. His fighting it consists of him holding his breath and basically locking down the core of his body, causing everything to go haywire. He did the same thing again when he started to wake up a few hours ago. And, as I'm sitting here, he's getting cranky (even though he's doped up) because the nurse is changing his diaper.

The course of action, then, is probably going to be to keep him on a sedative either until the surgery or until he decides to stop being so cranky about it. As I've already mentioned, it really stinks to not get to interact with him, but it's really not fun to sit here and watch his numbers go all haywire because we're trying to allow him to wake up. It's just not worth it.

As before, the doctors and nurses are doing an awesome job of taking care of him. They are on top of things when anything undesirable starts to pop up.

So, the ride continues. I'm enough of a realist to know that it will continue for a while. Up and down and round and round.

***

The rumblings around here are that his surgery might be on Monday, but no one has told me definitively that he is on the schedule for then (and even if he is, it doesn't mean for sure that it'll happen).

"A Minor Setback"

The phone in Allison's post-partum room jolted me awake this morning at a little after 7. It has rung before and, each time, everything in my body tenses. So far, it hadn't been because there was an issue with Ayden. That was not the case this morning.

Ayden had what the head of pediatric cardiology called "a minor setback." His ductus - the little vessel that needs to stay open until his surgery - had closed. Obviously, his body did not respond well to this development. The doctors and nurses went into a flurry to get him stabilized and back to where he needs to be. They were ultimately successful, but what happened would have killed him had they not been on top of it.

They suspect that the IV line they put in his arm - which is how he was getting his medication that keeps the ductus open - stopped working. No medication = closed ductus. So, they have upped his dose and are using a new line in his other arm to get it to him. He is now breathing via a breathing tube. They have "paralyzed" him so that his body can calm down after the stress it went through this morning. They have also given him a mild sedative so that he doesn't get stressed out now because he can't move. He's had antibiotics just in case there is an infection (an infection could've produced what he went through this morning, too). He's had a transfusion because the episode dropped the level of [insert fancy medical term that I can't remember here] in his blood. He's had . . . . . a lot done to him over the past few hours.

The upshot of all of this? They just checked his ductus with an ultrasound and it is back open. His numbers are back to where they need to be. In some ways they are actually better than they were before. For instance, the oxygen level that needed to come down has, even though the breathing tube is supplying him with normal levels of oxygen. And, he's no longer camping. He's out from under his little plastic tent.

I knew something would come up at some point. I never expected this whole process to go off without at least some kind of hitch. The fact that this happened hasn't really affected me in any major way, which is to say that I don't think he is now any less likely to survive. As I sit here in his room, though, it's painfully clear to me that his current paralyzed and sedated state is going to be tough to deal with.

We spent some time with him early this morning, before everything went haywire. He was awake. His eyes were open. He was moving around, making noises, messing with his pacifier (he can't use it right now, which kills me). I got to touch him, talk to him, and interact with him, or at least as much as one can interact with a 3 day old baby with 15 wires and tubes coming out of him. Now? We can't do any of that. And that really sucks. It was important to us that he "know" we are here. That he could feel our touch. That he could hear our voices. Now he is just kind of . . . there.

I have no idea how long he will be in this state. Part of me likes it because his numbers are good. The rest of me hates it because I don't know if I'll ever get another opportunity to "play" with him once he goes into the operating room - I want to maximize that time now, while I have it (which, at the moment, I don't). More conflicting emotions.

More clouded thoughts.

More grey.

A Brief Rumination on "Understand"

This afternoon, after the second line was put into Ayden's arm, our pediatric cardiologist did an EKG to clear up a few remaining questions. What she saw was unremarkable, so I won't even bother to discuss it. Instead, what is worth mentioning is a portion of a conversation between her, myself, and the NICU's attending physician (subtitle: head honcho), a neonat0logist (he was there to tell me about the day's fits and starts with Ayden).

The cardiologist mentioned that Allison and I asked more questions than most of the parents she has consulted with over her career. Example: in the 20+ years she has been doing this, I am the only parent to ever ask her what the worst case scenario is, assuming he survives all of the surgeries. She feels like we have a better "understanding" of the situation than most. She also said no one has ever had to sit her down and tell her what she has told many parents over the years - that their child has a life threatening heart condition. She makes no claim to "understanding" what that must be like.

I thought about all of this for a moment, then told them that "understand" is the wrong word for the latter use. It's really not about getting to the point where you understand. That's a fool's errand. There's no way to "understand" why something like this happens, why it has happened to you, why it didn't happen to someone who has no business procreating. We all have known, seen, or read about some sorry excuse for a human being who has neglected, abused, abandoned, or murdered his or her child. Don't get me wrong. Allison and I are not saints, by any definition of the term, but we are stable, responsible, and will genuinely love and care for our child. Why does the mother having her eighth child by the eighth different father get a perfectly healthy son, when she can't even care for the first seven? What about the abusive father who has already lost his parental rights to one child? What about the irresponsible teenagers who want all of the "benefits" of unprotected, premarital sex but have no interest in the little child that results? Why do they get something they do not deserve while our son is saddled with an abnormal heart? There can be no understanding here. I will never understand why this is something we must face, why it is our child this has happened to, why he might die.

I told them you can never understand why this has happened. Instead, you can only work your way through the overwhelmed stage, get your head wrapped around what is happening, and then deal with that the best that you can.

I don't know what the right word is to use. I only know "understand" isn't it.

They got it in!

Late this afternoon they were finally able to get the second line in. They had unsuccesfully tried to get a catheter line into his leg this morning. After trying a couple of other things (which also didn't work), they went for a catheter in his arm. That time, they got it.

Because the cardiatric surgeon doesn't want any lines close to his chest area (for obvious reasons), they couldn't put it in as far as they would like, having to stop it at his shoulder. So, it's not an ideal scenario, but it is a better way for them to give him his medication and his sustenance. Hopefully, they will be able to use the line in his belly button to draw blood but, eventually, that will become less and less useful. Nevertheless, progress was made, and that's what's important.

Thanks for all of your prayers on that. Now let's work on getting him out of his little plastic tent....

Something to pray about.

Overall, Ayden is doing well. He does, however, have a couple of things going on that we would prefer get rectified. One of those issues is why he is under his little plastic tent. Another is the problems the doctors are having with getting the necessary IV lines in him.

He has had one in his belly button from the beginning, which is providing his medication, but they really want a second one so they can draw blood to do tests. They have tried several different methods several different times and, so far, none of them have worked. It's tough with little ones, because their veins are so small and so thin. They have a tendency to just collapse. The second line is really important because, with only having the one line right now, they have to stop his medication so they can use that line to draw blood.

They are currently again - or, more accurately, still - trying to get this set up how they want it. So, again, if you are looking for something specific to pray about between now and the surgery, this would be a big one. Having his oxygen levels get into the desired range so he doesn't need his little plastic tent would be another.

A Bonus

More Pictures!

If some look odd, it's because he was in his little plastic tent (which you can see fully in a couple). We were there when the nurse tried an IV and then changed out his bedding, so we got some of him without it. You'll also see that Mom got to hold him (hopefully the nurse didn't get in trouble for that).

Another update, plus what to do if you want to visit.

Today the doctors did two more ultrasounds (they did one yesterday evening, on his heart). For one, they looked at his head. The other was for his abdomen.

In both, everything showed up normal. This is great news. This means either Ayden's heart defect is not a result of heterotaxy or, if it is, it did not affect any other part of his body. This means no twisted gut, no missing/extra spleen, no extra appendix, etc. Thus, as our regular OB put it way back when, he is simply a normal boy with an abnormal heart.

Of course, Ayden is far from out of the woods and his biggest challenge still looms in the very near future (no surgery date yet, if you're wondering), but him not having to face other physical challenges is a great comfort and a blessing. We are grateful to God for sparing him of that.

For reasons I won't even begin to attempt to explain, Ayden is currently residing in what I call a little plastic tent so that he can breathe in air with lower-than-normal levels of oxygen. This has prevented Allison from getting to hold him and has made getting more pictures difficult. I hope that both of these scenarios can be rectified soon. With the latter, I will post them if I can get them.

***

For those of you are in the area, we have no problem with you wanting to come visit either Allison or Ayden. Just be sure to call me first. I will be able to tell you when it's a good time to come, so that you don't show up only to discover that Allison is sleeping or that Ayden is being examined. This will also allow me to spread out the visits so neither of them gets overwhelmed. Ayden especially does not need to be unnecessarily stressed. Besides, you can't get in to see Ayden without being accompanied by Allison or I, anyways. Just call me in advance and we'll get it worked out.

Other important visitation information relating to Ayden:

• No one under 18 is allowed to visit him, per NICU rules.
• If you have recently been sick, think you might be sick, have been around someone who is sick, have contemplated taking a sick day even though you really weren't sick, you are not allowed to visit him, per MAD (Mom and Dad) rules.
  

An Update and a Picture

I was able to talk to the cardiologist last night after they did the ultrasound. We are still on schedule for the surgeries. The first one should happen by the end of this week. They will do another ultrasound today to check out his abdomen. This will hopefully tell us whether or not he has heterotaxy and, if so, what other issues that has caused, if any.

So, we did not get the specific miracle that we have all been praying for, but that doesn't mean we won't get the general one. Make no mistake about it: if the surgeon is able to successfully restructure Ayden's heart so that he can live an almost normal life, that will be a miracle.

***

Ayden and his pacifier, with whom he has established a love-hate relationship (also note his long fingernails):

He's here!

Well, all of the praying for contractions to really pick up and for Allison to get fully dilated worked (and very quickly after the request went out - thanks for that, everyone), but ultimately the doctors decided the best thing to do was a c-section. This wasn't our preference, but it became clear he wouldn't be able to make it out the usual way.

So, Allison went in for the c-section, I got to put on a very sexy, one-piece, full body surgery gown, and sit by Allison's head. They got him out, he had no trouble breathing, so I got to hold him for a few minutes (and Allison got to see him) before we went over to the NICU. All the standard stuff - ears, eyes, limbs, etc. - checked out. Right now he is getting a full evaluation from the cardiologists (including an ultrasound). After that, I should get to see him again. So, I'm waiting over at NICU, praying that they'll tell me it's a miracle, hoping that there are no other issues beyond his heart, and asking for strength to deal with anything else.

In the meantime, Allison is being transferred to her recovery room. She is doing well, also. She, of course, did absolutely awesome today. She did everything that she needed to do to get him out. In the end, it was her small stature that proved to be the unbreakable impediment.

Here he is: Ayden Avery; 6 lbs., 12 oz.; length TBD

Go Contractions, Go!

After a month and a half of asking God to stop any contractions that Allison has had, I now find myself standing by the monitor actively rooting for them to get more frequent and more intense. We are approaching the point of a c-section, which we really want to avoid. Everything we've been told is that it's better for him to come out the natural way (aside: nothing at all seems "natural" about this process to me). We need to get that final centimeter out of the way.

So, if you happen to take a pit stop on the blog anytime soon, and would like something specific to pray about, here it is:

Bring on the contractions!

9 centimeters and counting...

We're getting closer...

Today is The Day.

Reporting to you live from an undisclosed location in the Labor and Delivery Ward...

As long as Allison doesn't have to go through a very protracted labor, Ayden will be arriving today. Mom and baby are both looking good. Everything is progressing, albeit slowly. Her water broke several hours ago and her dilation is increasing, but the epidural has slowed things down somewhat.

It is likely going to be several hours before things really get going, but today's definitely looking like it's going to be the day.

Better Late Than Never?

We have worked nonstop at our house the past month. We feel perpetually behind, which I am told will be the case from now on. We tore apart our study and have completely redone that room to make it a more functional space. We have cleared out storage in almost every room in order to make space for the baby. AND we have tried to prepare the baby’s room and bathroom… as much as one can prepare anyway. We'll try to post pictures of Ayden's room when things actually start to look put together.

All of that is to say that there are many things that I have wanted to do that have taken me longer to complete. One of those things is to write about the baby shower that my family and friends gave us at the beginning of March. Rather than have many showers, they all went in together to throw one big one, and it was truly wonderful.

Everyone went out of their way to make the day really special. Elise created the most amazing children’s book invitations that came in three varieties, Goodnight, Moon, The Very Hungry Caterpillar, and Where the Wild Things Are. There were many other personal touches as well, such as a Goodnight, Moon cake, Puffy Muffin fruit tea and quiche, and strawberries with chocolate fondue. Everything was so lovingly gathered and prepared by our friends and family, and people came to the shower from cities all over Alabama, South Carolina, Georgia, Maryland, and Tennessee. The gifts fulfilled all of our many needs and wants, and everyone was so thoughtful and generous. I wish that I could detail everything that we received, but I am afraid that I would leave something or someone out. Please know how grateful we are to all of you that were part of that special day! Madi, thanks for the pictures!

The Cup

Some notes before I start. First, this will all make much more sense if you view a video that is the impetus for this post. Here is a preview. Here is where you can stream it for $2 (it's worth it, in my opinion), or order a DVD. Here, you can buy a version to download. I will warn you, it was pretty rough for me the first time I saw it. Second, I am no biblical scholar. There are so many things to talk about, but I know I can't do any of them any real justice. So, if I goof this up, which I will, please don't hold it against me. I have come to learn how important of an issue this is. I hope I can at least ably convey that. Finally, I continue to be immensely grateful for all of the love, support, and prayer that you have sent Ayden's way. I humbly ask that you keep it up.

I'll pause while you (hopefully) watch the video.


Done? Okay, then. On with the show.

***

As I've mentioned, I work for a Christian organization. Every Wednesday morning, there's a mini chapel service, which I usually don't attend. On one particular Wednesday morning, an ignoble reason compelled me to go. The video you (hopefully) just watched was shown at the start of that chapel service. As you might expect, pretty much everything in it hit me right between the eyes. Going in, I had no idea what it was about. I had no idea how it was going to start. I had no idea I would be crying around my coworkers. Not exactly how I had expected to start the day, obviously. But, after the shock of the opening wore off, I really started listening. I soon discovered that the guy was talking about everything that I have been wrestling with since I found out about Ayden's heart. What I learned was surprising, comforting, and sobering.

In Matthew 26:39, Jesus "fell with his face to the ground and prayed, 'My Father, if it is possible, may this cup be taken from me. Yet not as I will, but as you will.'" This verse is the source of my surprise and my comfort. Jesus, knowing what was in store for him, knowing what was on the line, still asked God to not have to go through it. He wanted the cup to be taken from him.

I can relate. I do not want to drink from the cup that has been put before me. More importantly, I do not want Ayden to have to drink from the one put before him. I want them to be taken away. I want him to be healed. I have "fallen with [my] face to the ground and prayed" that it would be so. Initially, I felt some selfishness in this. But to learn that Jesus, the only pure human to ever walk this Earth, once prayed in much the same way? That is a great comfort.

Now for the sobering part. In verse 42, Jesus "went away a second time and prayed, 'My Father, if it is not possible for this cup to be taken away unless I drink it, may your will be done.'" This, I don't want to relate to. At all. Nevertheless, I have adopted these two prayers by Jesus as my own (these are the verses I wrote on the wall in Ayden's room before I painted it). I do my best to really mean the second one.

***

If you watched the video, I hope that you found it to be as useful as I have. As I said, there is so much in it that I can't even hope to fully explore it here. If nothing else, you at least have a snapshot into what I have been praying.

As the video says, I have tried to be brutally honest with God. I have told Him that I do not want this. I do not want this for me. I do not want this for Allison. I do not want this for Ayden. I have told Him that I know He can heal Ayden, that He can save him. Implicit in those statements are questions: Will you? Why wouldn't you? These are questions that have no answers. Like the guy in the video, I don't know why one little baby is spared while another dies. Maybe God doesn't answer all prayers, or maybe sometimes the answer "no," or maybe sometimes it's "yes, but not in the way that you are asking."

"My Father, if it is possible, may this cup be taken from me."

I do not know if Ayden will survive what he must face. I do not know if God will step in. If He doesn't, I will not understand why. I only know that I, like all of you, have been asking Him to intercede, to finish the work that Ayden could not. I do not want him to have to drink from that cup. If he must, I pray for the strength to face it.

"Yet not as I will, but as you will."

(I'm still working on this part.)