Tag Archives: anxiety

When there is no “getting better”

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When there is no “getting better”, your definition of “better” changes.

Recently I read another blog titled “When Your Medically Complex Child Is Never Really ‘Out of the Woods'”, by Brandis Goodman. It sparked a few good conversations with family and really got me thinking about how I can express how the term “better” has changed for me.

Normally when people ask me if Lyra is “better” they are thinking in terms of normal illness. You know, like you get “better” from a cold. In that sense, Lyra will never get better. We can’t add the generic code that is missing, or take away the extra code that she has. We can’t change how her brain formed. We can try to help her other internal systems function more normally, but she will never be fully free from complications. She will never be “better.”

However, Lyra will have better hours, days, weeks, months, and (hopefully) years. When you care for a medically complex child, that really is all you can focus on. When I mentally check in on how she is doing, my thoughts sound like this:

“She has a better night, but a rough morning.” “Today was better than yesterday.” “Her morning was better.” “The last three days have been better.”

Now, does this mean that you shouldn’t ask me if Lyra is “better”?  Absolutely not!  Never be afraid to ask me about my child. Just recognize that we may be using different definitions of “better.” “Better” for Lyra doesn’t mean that she won’t stumble a few times, or end up in the hospital again, or need another surgery. “Better” doesn’t mean that she is “fixed” or cured. Better is all relative for her and changed day by day, hour by hour.

And really, there is no cure for cute.

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I Can’t Fix Everything

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The biggest lesson that I have learned as a mom is that there are things that I can’t fix. Sometimes, I can’t “make it better.”  All I can do is comfort my child and hope for the best. I am sure every mom, regardless of their situation, has felt this way. Mommy can’t undo a skinned knee. Mommy can’t make the cold go away. Mommy can’t stop the reflux or throw up. Mommy can’t undo the nasty thing the middle school girl said. All we can is hold our babies and let them know we are there for them.

Last night I had a bit of a break down over this. For almost a month now Lyra has had trouble tolerating her continuous feeds at night. These feeds are CRITICAL because she simply can’t take in enough volume during the rest of the day, and she has to sleep. It is my understanding that almost all tube fed kids have continuous feeds overnight. I have tried many things including:

  1. Slowing down the rate of her feeds
  2. Doing a faster rate with long breaks
  3. Adding medication to help her stomach expand
  4. Adjusting her sleeping position (she just rolls back on her back)
  5. Venting
  6. Asking other tubie moms if they any ideas
  7. Calling her doctor

Things will work for a few days and then we will have another bad night where she pukes. Now, if she only pukes once every four or five nights, no big deal. But she has puked the last 5 nights in a row. Last night was a bad one. She puked at 2:20ish AM. The first puke was formula. Mark and I rushed in, one grabbed the baby, the other cleaned and re-prepped the bed (we have this down to an art, but I have no idea who did what last night). I then spent the next 45 min with a screaming baby who is puking, not formula, but mucus. This is when I started crying. I couldn’t make it better. I would happily to throw up 10 times a day for a month rather than have my daughter go through this. It breaks my heart, and I can’t fix it.

5 burp cloths, 1 sleeper, 1 blanket, and a new tee shirt (mine) later, I finally got her to calm down. However, I could hear the deep congestion and her breath rattled like a kid with a really bad cold. I couldn’t lay her down. She was so congested she would just puke again. So, I sat and rocked her until her next feed was due to start (4 AM).  I didn’t sleep much after that. Every little sound sent me to the video monitor to make sure she was okay.

I am working with doctors (being that every squeaky wheel) to try to find a solution, but I can’t fix this on my own. Mommy does not have a magic wand. All I can do is pray tonight will be better, even if I am oh so anxious that it won’t be.

(P.S. Lyra is doing well in general: gaining weight and growing. This is just a small (annoying) piece in a big puzzle)

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Lyra and Nico (Cousins)

Is Back Always Best?

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I am writing, once again, at 1am. It has been awhile since I have written a post at this time, but I can’t sleep. I guess all moms are up at this time at some point.

Tonight I have been dealing with a complication from Lyra’s NG tube. Lyra has now had an NG tube for over 2 months. As a consequence, she has major problems with congestion sometimes. Basically, the tube irritates her nasal passages causing more mucus to be produced. Moving to dry Colorado has not helped the congestion situation and the problem can become more pronounced when she is laying on her back. Given, Lyra sleeps on a 45 degree wedge, but that isn’t enough when she is congested. Tonight I basically woke to her choking on her own mucus. My husband and I frantically ran around picking her up, turing on lights, disconnecting her feed, and dashing into the shower. After stripping her and getting her (and my clothed self) into a nice steamy shower, her breathing rapidly improved. She has been changed into a dry diaper, given saline drops to loosen the mucus, and wrapped in a new blanket (I skipped the pj’s). After that, she promptly fell sound asleep on my chest. This time she never turned blue (as far as I could tell), but when this happens it scares the living snot out of me.

….I couldn’t think of a better phrase at 1 am….

So now, I am faced with a new dilemma. Do I put her back down on her back, like I am supposed to? OR, do I put her down on her stomach where she is less likely to choke on her mucus? Since before I became pregnant I have preached to that babies MUST be put down on their backs. I understand that, since doctors have started recommending this, the number of SIDS cases has gone down. However, she is gagging on her mucus when I put her down that way, so is it really safer for her at this point? My instinct says, “NO!!!!”. At the moment, she is on her tummy and I am sitting 10 feet away listening to her breath. We have two humidifiers running full blast (and have all night), and she sounds so much better. She is sleeping peacefully with her little hands tucked under her chin.

But the guilt won’t leave me.

I sit here, wide awake, looking at her and wondering if I should just flip her back over. I know that is what the doctors would likely recommend, and it has been pounded into my head that babies must sleep on their back (although they don’t always in the hospital…. that is another story). However, the rational side of my brain points out that, when she gets congested like this, putting her on her back only leads to a scary situation for her and us. At what point is her sleeping on her back doing more harm than good? I don’t have an answer.

So, for now, I sit and watch my little one sleep away, on her tummy. At least, if I can listen to her breath, I know she is okay.

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Her first North Face jacket. Welcome to Colorado!

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Swimming with Uncle Kyle.

She pulled out her tube, so we let her enjoy some “no tube” time.

Dealing with the Trauma

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Trauma is not a word that I like to use, but in this situation I can’t think of a more appropriate one to use. Also, I am not always sure how well I “deal” with it, but I do live with it. The fact of the matter is that my husband and I are traumatized by everything that has gone on. I don’t think a day goes by where I don’t think, at least once, “Am I going to have to take her back to the hospital?” Sometimes this thought occurs because the future is so unknown. Sometimes I have it because we are having a bad day. But, the thought is always there.

There are defiantly some triggers for both my husband and I. The two that come to mind are a poor PO (from a bottle) feeding, and throwing up. When Lyra is only willing to take a small amount from the bottle it flashes me back to desperately trying to get her to take just a little more, and knowing that it wouldn’t be enough to sustain her. Now, I know that she has the NG tube now and she WILL get the nutrition/calories that she needs. That doesn’t stop me from remembering being in tears and begging my baby to “just take a little more” because I knew her tiny body was in desperate need of calories and hydration. It doesn’t stop me from remembering how helpless I felt when I would bring the much needed bottle to her mount, only to have her scream and refuse to suck from it. Most of all, it doesn’t stop me from remembering how defeated I felt when she threw up what little we had managed to get in her.

Throwing up is the other major trigger.

Now, she does still throw up. I get that all babies throw up from time to time, but when you have a failure to thrive baby with a history of feeding issues, it can induce an anxiety attack every time it happens. When she throws up now, all that I can think is:

“What did I do wrong?”          “Did I move her too much/too quickly?”          “Did I push her to take too much from the bottle?”          “Did I start the NG feed too quickly after the PO feeding?”          “Is the NG feed too fast?”          “Did she get enough?”         “Will she keep her next feeding down?”

“Will I have to take her back to the hospital”

On and on and on…….

Now, I know that not all of these thoughts are productive. Sometimes, I did nothing wrong at all. But that doesn’t stop me from thinking some (if not all) of theses when it does happen.

The other thing I struggle with is hearing her cry, especially in fear and/or pain. I know her cries for fear and pain very well at this point, and sometimes I hear them when they aren’t actually happening. Knowing that she isn’t actually crying is a big reason why I don’t like to be in a different room than she is, especially when it comes time to sleep. Even if I am taking a nap and my husband is home, holding her, I swear I will hear her cry and it will send me vaulting out of bed. Tonight was a great example of what I struggle with.

Lyra was fussy most of yesterday (plus she threw/spit up three times). For the midnight feed she did not want to calm down and was very upset through much of the NG feeding. Sometimes, if she is too upset during the NG feed, she throws up. So, my husband and I spent the 25 minutes trading off trying to calm her down without picking her up or accidentally having her gag on her pacifier. Finally, we got her to fall sound asleep at the very end. Rather than risk waking her up in the transfer to her bed in our room, we decided to leave here in the nursery with the video monitor on. Laying in bed, I could swear I heard her crying. I could hear it building into real distress. Opening my eyes, I looked at the monitor only to see her still her peacefully sleeping always. However, even with my eyes open and watching her, I swore I could still hear it. Moments like this make me feel crazy and are hard to acknowledge and talk about, but they happen. I know why the fear is there and the moments that caused me to develop such anxiety about those two types of crying, but knowing and controlling are two very differently things.

For now, we are dealing with our trauma the best that we can. For me, I have to keep reviewing the signs that tell me that she is okay. I also try to find tools, like the monitor, to help show me that she is okay. When I start to panic, or fall apart, about some of this, my husband tells me what I can’t tell myself. I do the same for him when he starts to lose it a little. Right now, we are still a team.  We try to recognize when one of us needs a break to regroup, or words about what is different (and so much better) about having her home this time. At this point, we have had her home for the longest period of time yet. As the days go by, I hope the anxiety will decrease. But for now, the best I can do is admit it is there and deal with it by using the few (but powerful) tools that I have.

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Lyra’s first 4th of July.

Pink, white and blue was the closest I could get with the cloths that fit her.