When there is no “getting better”

When there is no “getting better”

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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Let’s Call Today a “Learning Experience”

Let’s Call Today a “Learning Experience”

Today was ….. interesting….. Lyra has a follow up appointment with ENT at Children’s Hospital.  There had been a little confusion because we thought the appointment was on the 28th, but when we received the phone call to confirm it, we double checked. The office said the appointment on the 28th had been cancelled and her appointment was, in fact, on the 22nd (today).

So, my mom and I prepared. The goal was to be out the door by 10 AM. WE MADE IT! Once we got down to the parking lot, Lyra puked….. So, my mom did a field change in the car while I ran the barf cloths back up to the apartment. After all was said and done, we took off by 10:25ish. We still had plenty of time to make it to our 11:20 appointment.

We get to Children’s and realize that the stroller in in my husband’s car. I ended up just carrying Lyra. The carseat was too heavy.

We then wait for over an hour to see the doctor.  Finally, we get called back and a nurse comes in to talk to us. Apparently, we have to see the doctor who did the surgery and that doctor was NOT in the office. Mind you, at this point, Lyra is really REALLY hungry.  So, we make a new appointment, they gave us a parking validation, and we left to give her a bottle. The good news is, she took a bottle well!

Finally, we get down to get the car to go home (we had to do valet because the parking lot was full) and the valet can’t find my car.  This is a bit more of a problem because my car is old and doesn’t have a fancy button to make it beep. They finally find my car and I am trying to set up her NG feed. While setting up the bag, two of the bottom pieces (including the piece that makes direct contact with the NG tube) fall off and land on the ground of the yucky parking garage…. Oh, did I mention we are having a heat wave in swampy DC?…..The good news is, I had an extra bag! We finally get everything set up with the NG and go to drive out of the garage. The final blow, the validation ticket we were given wasn’t working. Luckily they just let us out.

So, here is what I learned:

  • Always double check that you have an appointment with the right doctor
  • Give yourself at least an extra 30 min. when you have to drive a long ways
  • Always pack extra cloth for the baby and any other people who may be holding the baby (luckily this time she didn’t puke on either of us)
  • Pack at least 1…. probably 2…. extra NG bags
  • After all of this, go to lunch and have a nice cold sangria with your mom

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Lyra’s Second Swimming Lesson with Grandma

One Step Forward, Two Steps Back

One Step Forward, Two Steps Back

It’s funny how you can go through a whole day feeling so positive, only to have everything turned upside down by a single number. When I came in this morning we found out that Lyra had lost a little bit of weight. The doctor increased the amount of milk she is supposed to take and we moved on with our day. Throughout the day she did great. She was taking more orally than she did yesterday and she didn’t have any trouble keeping down the extra volume pumped in via her NG tube. Her personality was also coming back today today. She spent a long period of time awake and checking out the world. We spent much of the day just looking at each other and making faces. She even did a little tummy time in her crib. With all of these positive indicators, I decided to stay until she was weighed again. I was really excited. We had done everything right today and she looked great.  And then the numbers came in….. 3.445 kg  (7 lb. 9.2 oz). It is a full oz less than she weighed yesterday.  She should be gaining an ounce per day, not losing it.

I just don’t understand. We are doing everything right. The surgery fixed the laryngomalacia. She is eating more AND keeping everything down. I am actually eating regular means and most of them have solid nutritional value, so my milk should be okay. I make sure to eat protein, fresh produce, and fats. Her reflux seems under control…. I just don’t get it. What are we doing wrong?  She has to do two things to be able to come home: 1) Consistently eat and keep her meals down, 2) GAIN WEIGHT. With the NG tube we have #1 taken care of. I don’t know how we will fix #2.  I don’t even want to go home tonight and see my apartment full of my baby’s things, only to know that I have no idea when she will be home again. I just want to be home and sit on my couch with my baby, husband, and my dog.

Weekends in the Hospital

Weekends in the Hospital

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Weekends in the hospital are quiet. Rounds are later with smaller groups, specialists typically don’t stop by, and (in my experience) not much changes in the game plan. My day today consists of feeding every three hours, working on some photos I took when she came home from the NICU the first time, and trying to take naps. I honestly don’t get much sleep, but at least I am eating a little better this time around.

Sometimes it is frustrating to be here.  While I know that she is getting good care, I feel like I am kept from caring for my daughter sometimes. Feeding is a great example. Lyra only eats breast milk that I pump. At home I am the one who prepares everything. Here, I am dependent on waiting for the nurse to get my milk out a freezer and warm it up for me. If the nurse is busy, her feeding gets delayed. I get that nurses are taking care of more than one child, so sometimes things get pushed. But, I am just taking care of one child. Mine. If I could just warm up her bottle myself, it would make things a lot easier for all of us and make me feel like more of a parent. Also, I wish I knew where the supplies were for me. I have to put my milk in special bottles, but I produce a lot and go through them very quickly. I frequently have to ask the staff 2-3 times for new ones before someone remembers to bring them. I get why they don’t let anyone grab them, but that doesn’t mean I don’t wish that I could do it.

For right now, all I that can do is keep myself distracted, play with her when she is awake, and wait for the next feeding.

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