We're home! For awhile it looked like we might have to stay, as his heart rate and temperature suddenly climbed, but after much prayer, the Lord had mercy and he stabilized. They decided to let us come home. The other kids are still at my in-laws until tomorrow so that we might settle in peacefully. He's doing very well.
My opinion of Riley, our local children's hospital, went up considerably because of this visit. The staff in the heart center is phenomonal (with the exception of one very arrogant nurse practitioner). They went out of their way to make sure Eon (and his parents) were as comfortable as possible. They obviously love what they do and they are great at it. We are very grateful!
The Lord is teaching me much about faith, spooky hens, and child advocacy. I'm sure I'll share most of it in another post, but for now, I'm going to enjoy the comfort of my own bed.
Monday, June 15, 2009
Saturday, June 13, 2009
Out of ICU
Eon is doing great! He's been moved from ICU to the heart floor and there is talk that he could go home as early as Monday! He started the day looking miserable. I got here to relieve Shawn around 7:30 and he just looked pitiful. I asked Shawn if he'd been fussy and he said, "Only when he was awake." But, as the day progressed, they removed his chest tube, foley cath, and arterial line and he is starting to show us some smiles. Mostly he just eyes everyone suspiciously. His milk intake is good and he's tolerating it well, too. I finally got to hold him as we brought him to the 4th floor and that's the first time he really smiled, as well.
Praying for a good night, no infections, good pain control, and sleep for both of us.
Praying for a good night, no infections, good pain control, and sleep for both of us.
Friday, June 12, 2009
Surgery a Success!
Surgery was a success! He's in the ICU, still sedated but stable. I'm exhausted and will post more later, but need to sleep. :) Thanks for all the prayers.
Thursday, June 11, 2009
Surgery time
Spent the day in pre-op. Everything looks good and surgery is scheduled for 7:15 a.m. EST. We appreciate your prayers and I will update when I can.
Monday, June 8, 2009
Faith, Fear, and Focus
Simeon's surgery is 4 days away and I do not know how I am going to get through the next few days. I am in a fog. I feel like my brain is already at the hospital and I cannot complete a thought that is not related to infant heart surgery. I've gone from complete peace to paralyzing fear to an odd numbness in the span of one weekend.
Yesterday, I was pondering faith versus fear. I used to think the two were opposites, or, at the very least, mutually exclusive. I'm learning, though, that they can co-exist. In fact, I'm learning that there is a type of fear that is born from faith. Because of my faith, I know that God "works all things together for good for those who love Him', that he is good, that He loves me enough to send His only Son to die for me, and that His thoughts toward me are to give me "a future and a hope". God often allows suffering to deepen our faith, conform us to His image, cause us to lean on Him, and to teach us things that we could never learn in the midst of ease and pleasure.
The fear comes with the faith. The fear says, "Maybe there is something God wants to teach me and He needs to take my son to do it." I have complete peace that He would provide grace, peace, and comfort if that were to be the case, but it doesn't make the thought any less terrifying. I can't help but think of the "what ifs" in this, of all, weeks. The problem with faith versus superstition or just dumb luck, is that I can't say, "Oh, it will be all right", because I know that sometimes, it's not.
I know there will be a part 2 to this post. I know that God is working something in me even now through this experience. But for now, my thoughts are swirling even though my brain feel like it's shut down. I cry a few times a day and am doing my level best to be present for my children. They need me to be here and connect with them. It's a chore and a joy at the same time.
Yesterday, I was pondering faith versus fear. I used to think the two were opposites, or, at the very least, mutually exclusive. I'm learning, though, that they can co-exist. In fact, I'm learning that there is a type of fear that is born from faith. Because of my faith, I know that God "works all things together for good for those who love Him', that he is good, that He loves me enough to send His only Son to die for me, and that His thoughts toward me are to give me "a future and a hope". God often allows suffering to deepen our faith, conform us to His image, cause us to lean on Him, and to teach us things that we could never learn in the midst of ease and pleasure.
The fear comes with the faith. The fear says, "Maybe there is something God wants to teach me and He needs to take my son to do it." I have complete peace that He would provide grace, peace, and comfort if that were to be the case, but it doesn't make the thought any less terrifying. I can't help but think of the "what ifs" in this, of all, weeks. The problem with faith versus superstition or just dumb luck, is that I can't say, "Oh, it will be all right", because I know that sometimes, it's not.
I know there will be a part 2 to this post. I know that God is working something in me even now through this experience. But for now, my thoughts are swirling even though my brain feel like it's shut down. I cry a few times a day and am doing my level best to be present for my children. They need me to be here and connect with them. It's a chore and a joy at the same time.
Saturday, June 6, 2009
We've had no apnea alarms since my last post! Yay! I did call the cardiologist's office and reported the bradycardia (low heart rate) to the nurse who didn't seem to care. Which is fine. If she's not concerned, niether am I.
Four of Eon's siblings spent the last week with their cousins at my sister, Tonya's house. According to her, they were amazingly obedient and wonderful (until the last day). Once they arrived home, all sense of obedience seemed to fly out the window. Why is that? It's like they had to work so hard at being good, they let it all hang out when they come home. We call it "re-entry" and it has been difficult at best.
Eon, however, seems energized at having them home. He is eager to show off his new skills for them, like batting at the hanging kitty on his swing or waving his "hallelujah hand" while sitting in his bouncy seat. Mostly, he just seems more awake and interactive. Apparently, we were boring him. I was actually concerned that he was sleeping so much, but I think he was just taking advantage of the quiet. I wish I would've joined him!
Surgery is Friday and I am starting to let worry creep in. I wish I had a better idea of what it entails and what I can expect for recovery. I guess I have to wait until pre-op on Thursday to get the details.
Four of Eon's siblings spent the last week with their cousins at my sister, Tonya's house. According to her, they were amazingly obedient and wonderful (until the last day). Once they arrived home, all sense of obedience seemed to fly out the window. Why is that? It's like they had to work so hard at being good, they let it all hang out when they come home. We call it "re-entry" and it has been difficult at best.
Eon, however, seems energized at having them home. He is eager to show off his new skills for them, like batting at the hanging kitty on his swing or waving his "hallelujah hand" while sitting in his bouncy seat. Mostly, he just seems more awake and interactive. Apparently, we were boring him. I was actually concerned that he was sleeping so much, but I think he was just taking advantage of the quiet. I wish I would've joined him!
Surgery is Friday and I am starting to let worry creep in. I wish I had a better idea of what it entails and what I can expect for recovery. I guess I have to wait until pre-op on Thursday to get the details.
Wednesday, June 3, 2009
Apnea monitors, heart rates, and alarms...oh my!
You may remember that after Eon's scary "found him not breathing and unresponsive" episode that the ped gave us an apnea monitor. It is something I wish I'd had for my other kids, too. I call it a sleep aid for mothers. Prior to receiving it, I did not sleep through the night, or even several hours in a row. Eon did, but not me. I constantly woke up to check on him. So much so, that I even started going to counseling for anxiety. Turns out, all I needed was an apnea monitor. I tried to convince the counselor to prescribe them for all her patients, but I could see how it probably wouldn't apply in every situation. :)
It went off one time the weekend between receiving it and his hospitalization, but it was a false alarm due to his electrode peeling off. I was just happy to know the dang thing worked! Since coming home from the hospital almost two weeks ago, we've had three infant episodes and one false alarm. Unfortunately, they were all in the last two nights. The night before last, at 1:00, it went off for 3 seconds due to his heart rate dropping. The alarm woke him up, as well as everyone else in a 3-block radius I'm sure, and he was fine. Early in the morning, we heard the sustaining beep of a false alarm. It was just Eon trying to remove his electrode. He likes to hold onto his shirt and accidentally grabbed it, too. Last night, it went off at 2:30, for 1 second (it beeps every second) because he stopped breathing. That means he stopped breathing for 21 seconds. Again, the alarm woke him up and he was fine. We were jolted out of bed at 5:00 this morning because it went off for 5 seconds, this time for low heart rate again. He's fine. He's fine!
I never thought I could actually come to love a machine. I am so grateful that we have it! (falling back to sleep after an episode is a little tricky, though:)
It went off one time the weekend between receiving it and his hospitalization, but it was a false alarm due to his electrode peeling off. I was just happy to know the dang thing worked! Since coming home from the hospital almost two weeks ago, we've had three infant episodes and one false alarm. Unfortunately, they were all in the last two nights. The night before last, at 1:00, it went off for 3 seconds due to his heart rate dropping. The alarm woke him up, as well as everyone else in a 3-block radius I'm sure, and he was fine. Early in the morning, we heard the sustaining beep of a false alarm. It was just Eon trying to remove his electrode. He likes to hold onto his shirt and accidentally grabbed it, too. Last night, it went off at 2:30, for 1 second (it beeps every second) because he stopped breathing. That means he stopped breathing for 21 seconds. Again, the alarm woke him up and he was fine. We were jolted out of bed at 5:00 this morning because it went off for 5 seconds, this time for low heart rate again. He's fine. He's fine!
I never thought I could actually come to love a machine. I am so grateful that we have it! (falling back to sleep after an episode is a little tricky, though:)
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