Friday, June 26, 2009

Spooky Hens

Catchy title, eh? That's what a friend of mine calls women who seem so "spiritual" they are barely here. Recently, I unwittingly sought out a spooky hen. Ever since giving birth to Eon, people in our circle have been encouraging me to call this woman since her daughter has Down syndrome, too. I was unready to cold call a woman that I'd never spoken to, until a few weeks ago when heart surgery was looming. I knew that this woman's child had undergone heart surgery and thought I'd drop her a line.

Admittedly, my expectations were probably a bit high. I thought we'd immediately connect over shared experience and brag on our children, discuss doctors and therapists, and reminesce about the moment of diagnosis. A full 90 seconds into the conversation and I knew I'd made a big mistake. She seemed so intent on discussing angel visitations and heavenly things that she made little earthly sense.

Throughout the conversation, it became abundantly clear that she really had very little knowledge of Down syndrome, which was very surprising to me given that her daughter is four years old. Most of the moms I've connected with have become experts on the subject by the time their kids are a few weeks old.

Unfortunately, at the close of the call, the reason behind the ignorance was shockenly apparent. She informed me that her daughter is being healed of Down syndrome, that even the physical therapist has noticed that she has less and less features of the diagnosis. And then she assured me that my son will be healed as well.

I was speechless. I so wish that I had stuck up for him. I wish that I would've told her that Eon is perfect, that he was created in the image of an Almighty God, that Down syndrome is a wonderful part of who he is. Instead, I mumbled something about needing to attend to my children and hung up.

In telling this story to other Ds moms, I've had some think that my point is that healing of Ds is impossible because a third copy of the 21st chromosome is in every cell of his body. Not true! I know that God could very well eliminate that extra copy if He chose to. He's God. My point is: Why would he want to? As Psalm 139 points out, God formed Simeon in my womb. His days were set before him before one of them came to be. God created him for a purpose and for His pleasure. I am blessed to be a part of it.

I'm sad for this woman's daughter. The best thing we can do for any of our children is to embrace them fully. I wonder what kind of message she is sending to her by insisting that she needs to be healed of the building blocks that shape who she is. Another friend of mine defended her by saying, "Well, she has a lot of faith." Does she? Is that what faith is - claiming that reality is different than it actually is? I don't think so and I'm pretty sure scripture backs me up. I'll get to that in a future post.

Saturday, June 20, 2009

Pumping must go!

Well, after some soul searching after my last post, I think I might've figured out where my frustration really lies. I am constantly frustrated by my complete inability to accomplish anything. After spending a day looking at my time management, I realized that I spend SIX HOURS of everyday pumping for and feeding Eon! That does not include baths, diaper changes, therapy, consoling fussiness, etc.

No wonder I can't get anything done! Throw in the usual refereeing, soothing ouchies, detangling hair, buttoning buttons, tying ties, etc. that go with lots of littles, and it's a wonder they are even fed. What a relief to have a cause.

Now I just have to figure out what to do. I have nursed five babies for at least a year each. Since Simeon needs his milk thickened, I have been exclusively pumping for him for over four months. I really do believe breast is best and I wanted him to have the best start possible, but, at some point, you have to look to the needs of the whole family. His next swallow study is scheduled for next Monday. He'll be five months old on that date. If they don't clear him for thin liquids, I will begin to decrease pumping and introduce formula.

If they do clear him, I'll try to teach him to nurse. Is it even possible to teach a 5 mo.-old to breastfeed? Hopefully, we'll find out. I'm not hanging my hat on it. Any suggestions are welcome! Either way, pumping will soon be a thing of the past and I am looking forward to it. Maybe I'll actually get to complete a task once in awhile. :)


The enormity of having a child with Down syndrome hits me at the oddest times. Just now, as I was changing his diaper, it hit me that I have a child with special needs. Probably because he doesn't actually have any special needs at this time, with the exception of thickened liquids, I have trouble wrapping my brain around that. (The recent surgery for the vascular ring was completely unrelated to Down syndrome - just one of life's quirks.)

But, when I think of what's to come, I am overwhelmed. I alternate between a fascination with articles and antecdotes about adults with Ds, and a complete denial that my child will be anything like them. At this point in the journey, I am simply overwhelmed by having six children, four of whom are under the age of six. But, I know what's coming. He's a wonderful baby and I am looking forward to his toddler charm, but with that will come more therapies and an ever closer determination of whether he'll be the elusive "high-functioning" or the dreaded "low-functioning" person with Ds.

There, I said it. While Simeon has equal value regardless of high or low, I want him to be high functioning for his sake, as well as ours. Why? Because life would be easier. No matter how much the Lord shows me about the value of suffering, I'm still human enough to want, hope for, even long for easy. Right now, everything just seems hard. It's hard to even complete a load of laundry without some sort of emergency around here and organizing the clan to even exit the house leaves me irritated and exhausted. I want to hope that someday, life won't be so blasted difficult. With Down syndrome in the picture, I'm not sure I can.

Monday, June 15, 2009

Home, sweet home!

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.

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.

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.

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.

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:)