Voice

The boy has some lungs on him! I would know. I have heard him cry twice today. Once he cried because they were putting in another IV. I had to leave the room for that one. He cried again after they put the arterial line back in. Apparently, the medication that they use during that procedure makes you wake up angry. Yes, he was definitely angry!

According to the doctor, the only thing keeping Ayden from graduating to the next floor is his blood pressure. It's too low. They aren't sure if Ayden's blood pressure is too low or if the blood pressure cuff is just not reading his blood pressure accurately. As a result, they need the arterial line to check his blood pressure directly. (Yes, they took that line out yesterday. That line was no longer good, so they needed a new one.)

A speech specialist came in today. Not only did she check for voice, but she also checked for sucking reflex, etc. He passed. We knew that he had regained his sucking reflex because his daddy had gotten him to suck on a pacifier a few times. We are glad to see all of these things because it means that he doesn't have an oral aversion after having had the breathing tube for ten days.

They have begun giving him feeds to his stomach. Originally, they bypassed the stomach with a tube that went directly to his intestines. Hopefully, he won't throw up on Bryan again... or anyone, for that matter.

He's doing well. Please don't think that because you haven't heard from us, something terrible has happened. We just can't keep up with all the love that you all have showered us with! Please continue to pray for Ayden and his fellow hallmates. We appreciate you all!

Two Weeks Old

It's hard to believe that we have been parents of a beautiful baby boy for two weeks now. I look at Ayden and wonder how someone so amazing was given to us. We are immensely blessed!

Ayden has had a better day today. His RA line (right atrial) was removed. He is slowly waking up from all of the meds that they gave him to wean him from possible withdrawal. His temperature is normal. His blood pressure is still all over the place, but when he's awake, it's normal, so they seem to be okay with that. In general, he's not so grumpy. We are actually seeing smiles!

Below are pictures from last night and this afternoon. Ayden's night nurse Laura helped me bathe Ayden, put lotion on him, and change his diaper. While all of that can be intimidating with any new mother, it's even more scary when your kid has all of these wires and tubes coming from him! Laura also played "dress up" with Ayden and put the shirt on him. (Bryan prefers to call this process "clothing him" and not "dress up.")

The Definition of "Normal"

Ayden’s first few days after surgery can be characterized by the medical world as “abnormal.” That is, he made rapid improvements over a short time period and had no complications.

The past two days, however, are what the doctors and nurses would anticipate. These are “normal” days for a child who has had the Norwood procedure. They feel anything but “normal” to Bryan and me. In fact, seeing Ayden struggle is very stressful, and we want nothing more than to get out of the valley and be back at the peaks. I personally am trying to be at peace about it and continue to “wait upon the Lord.” God has already been so good to us, and it is very apparent to me that God’s Healing Hand has been upon our baby boy.

Ayden seemed to start his day rather peacefully. In the late morning, his blood pressure dropped, and they have been chasing it with meds all day. In addition, his temperature fell, which they believe may indicate some kind of infection. They took a culture and started him on antibiotics, just in case. Since then, his temperature has risen back to normal. (There’s that word again; only this time, it does, in fact, mean “normal.”)

The good news from today is that his EKG looked perfect, as did his ultrasound. We are glad that his heart appears to be doing so well. Blessed Assurance.

Bryan and I have stood by Ayden’s bed quite a bit over the past two days. We stroke his forehead, hold his hand, talk to him, and read to him. I think we all feel comfort in being together. I am so thankful for our little boy. I loved him even before he was conceived, and I know that my God loves him far more unconditionally.

"We're gonna need a bigger boat."

Adyen's rough day yesterday prompted me to sleep in his room last night. When I got up this morning, I walked down the hall in the direction of the bathrooms and noticed some of the nurses looking out a bank of windows. I stopped to look, too. This is what I saw:

Yes, that is Children's Way, the road that provides access to the main entrance of the hospital.  And yes, it is very flooded.  I actually took these pictures after I had hurriedly driven over to the Ronald McDonald House and picked up Allison (I was concerned that if I didn't go right away, I might not be able to get there later).  What I had seen 30 minutes prior to taking these was considerably worse.  There is water coming into the Grand Lobby and the ER entrance.  It's just crazy.  At some point today I am going to have to attempt to go check on the house, but I don't know if enough roads will be open to allow me to get there.

***

As for Ayden's night, he had a third SVT episode at around 10:30 p.m. when the nurse started to change his diaper.  As with the others, the injection brought his heart rate back down quickly.  This morning they started him on a medication drip that will hopefully prevent these from happening.  Best case scenario at this point is that the catheter going into his chest is hitting just the right (wrong) spot and is the source of the problem.  If so, once that is taken out, the problem would go away.  If not, he would be on medication for a long time.

After the SVT, the night went smoothly.  The nurse bundled him up, as you'll see below, and he slept most of the night.  He's actually sleeping right now, too.  This is a great comfort to me.  The nurse he had overnight - Laura - is just awesome, even though she's a Gamecock.  I believe she is scheduled to work again tonight.  This is also a comfort.  I'm also trying to remind myself that these things are not related to his heart defect or his surgery.  He continues to do well in that area.  Instead, these issues are either independent or on the periphery and can be worked out.

Hopefully, today will be a better day.  At least inside.

An Ugly Day All Around.

While the residents of Middle Tennessee deal with the floodwaters outside, we are facing our own challenges inside. Today has been Ayden's roughest day since his surgery. I don't yet know if it's major or minor, but I believe I can definitively state today is a hiccup. I suppose it was only a matter of time.

This morning the doctors removed one of the drainage tubes going into his chest. This procedure went off without a hitch. For some unknown reason, however, when the nurses later began to switch out the dressing where the tube was removed, Ayden got very mad and went into supraventricular tachycardia (SVT). This is a fancy way of saying that his heart rate got really, really high - somewhere around 220 beats per minute (by comparison, his normal rate ranges from 140-155 bpm). As I understand it (which I really don't), the electrical impulse that tells the heart to squeeze basically gets caught in a loop, which produces extra "squeeze" signals. The team quickly got his heart rate back down (as they did the two previous times this has happened), so it wasn't a huge deal. Later, though, it happened again when the nurse was doing nothing more than repositioning him. Again, it was controlled, but they will most definitely now be looking into the issue (there's a cardiologist here in the hospital that specializes in this kind of thing). I don't understand there to be any real long term dangers with this, but it may impede his recovery progress. We were both in the room both times this happened - it's a little disconcerting to see the nurse hustle out of the room to go get the doctors.

The main problem today has really been that Ayden has seemed uncomfortable, or even in pain, almost all of the afternoon. Whatever the problem is has kept him from being able to rest, which is of great concern to me. One problem that we recently discovered is that his feeding tube had slid back up into his stomach - remember, they want it in his intestines - and had been dumping milk into his tummy for some unknown period of time. I suspect, based on my vast medical knowledge, this has been the source of his discomfort. He had never had anything in his belly before, so I think that caused problems, including maybe some acid reflux (which Allison will tell you is no walk in the park). He had been acting all day like he needed to cough. As it turned out, he needed to puke. Which he did. On me. This is how we discovered the tube had moved.

They shut off the tube and moved him back on IV. Since then, he has done better, though he's still somewhat inconsolable (I think he still has some milk he needs to throw up). They will x-ray to see where the tube is, try to get it back in place, then x-ray again. This is a common problem and will likely happen several more times before he leaves the hospital (he will probably pull the line out with his hand at least once).

There are other theories about his discomfort. One is that he might be going through withdrawal, as he was on a pain medication drip for 10 days while he had the breathing tube. They are giving him things now to more slowly wean him off - he had just gone cold turkey yesterday when they took out some of the IV lines.

S0, the day has not be as smooth as we would like. Allison and I just had to get out of the room for a while this afternoon so that we didn't get too stressed out. I have stood by his bed for probably 2.5 hours since mid-afternoon. At one point I was standing there for over an hour. The hardest part of the day for me hasn't been the SVT episodes, but has been the way he's looked at me - with a simultaneous death grip on my finger - as I've stood beside him this afternoon.

It's been a look imploring me to fix it, to help him, to do something.

And I can't. And it's the worst feeling I've ever felt.