We just do things differently

We just do things differently

I feel like there is a misconception that children with disabilities just stay at home and aren’t able to participate in many normal activities. Given, there are times when we have to be selective about where Lyra goes and what she does.  While she has been doing well recently, she is still considered medically fragile and complex. Also, there are some “normal” one year old activities Lyra simply cannot participate in because developmentally she physically just isn’t there yet. However, that does not mean we are restricted to staying at home. You would be amazed at how creative parents and children are. The truth is, like many other kids with disabilities, Lyra is just a kid… we just do things differently.

The biggest hurdle for Lyra participating in activities is her tube (not her developmental delays). It’s not the fact that it is there, it’s the fact that she is connected to her pump 20+ hours per day.  So, I have become very creative.  My two most valuable tools: her backpack and a Mommy Hook.  Oh how I love the Mommy Hook.  I hang her backpack everywhere: in the car, on a swing, in a tree, on a fence, on the back of a chair, on her walker….. the list goes on and on.  Lyra goes everywhere with me, and she does it with her pump.

The proudest moment I had, as far as creativity goes, was figuring out how to let her swim while connected to her pump. On our recent trip to Hawaii we simply put her backpack into two plastic bags and then floated it behind us in an infant floaty!  It worked great. We were able to swim with her like we did with all of the other infants in our family. And she had a blast!  She was able to do it…. just in a different way.

Now, I am not saying that Lyra is able to do everything an average one year old does.  Developmentally she just isn’t there yet and it would be unreasonable for me to expect her to do those things. She doesn’t walk or even crawl (although she is SO CLOSE), so some activities just aren’t going to happen right now. She also has trouble with the heat and seems to struggle a little regulating her body temperature, so we just have to make sure we have a way to cool her off with these hot summer months. But she loves to swing and even goes down slides with her daddy. She plays with her cousins and sits at the dinner table with the rest of the family. She just comes with a few attachments and we just have to do things a little differently.

We made it to Hawaii!!!

We made it to Hawaii!!!

For those of you who were following my blog at this time last year, you will know that we missed this trip because Lyra was in the hospital having surgery. Even this year I wasn’t so sure we would make it because Lyra and I both have colds. However, she is able to keep enough fluids down, so we made it! I am beyond excited to be here with my family.

While I am ecstatic to be here, there is something that I have noticed recently and is the real thing I wanted to share with everyone. 

Lyra is just a baby.

Something I struggle with (and I am sure other special needs parents find the same thing) is striking a balance between wanting the world to accommodate your child’s needs, and wanting the world to just treat your child like any child. At this stage in the game I don’t have much to complain about in terms of accommodations for Lyra. She basically needs what any baby needs with a few modifications. However, I do get anxious about how others perceive her and I do have to be extra vigilant about who/what she is exposed to (germ wise). 

While Lyra is medically fragile, she is no porcelain doll.

This kid is tough as nails. She can bonk her head and not even flinch. There have been times where her whole body looks like it was used as a pin cushion and she is bouncing around in her walker flirting with everyone. 

It is hard for me at times. She rarely plays with other babies because it is too risky at times to expose her to them. She is also behind developmentally so sometimes it is hard for her to keep up. It’s difficult for me to see the differences between her and typical children. Also, I am always concerned about her attachments. They mark her right away as being different.

There have been a few key moments in the last month or so that have shown me that, it isn’t that people don’t notice her tube, it’s that they don’t care. To them, she is just a baby. It warms my heart to see her treated that way. 

The first moment was when a good friend of ours came to visit from Maryland. S has been around a ton of babies and just loves kids. While I knew S’ heart was in the right place, I was a little worried about his reaction to the realities of taking care of Lyra.

I needed to have more faith in people.

S ment Lyra right where she was. He didn’t expect her to be doing certain things, or get weirded out by her being connected to a machine. He took note of her tube, where it was, and then just Lyra how she is. He played with her and carried her just like you would any other kiddo. He also watched me give meds, prep bags, and attach/detach her extension. With some written instructions I probably could have left her with him for a few hours. Uncle S would have been just fine.

The second moment was with my nephew. It was a simple, quick thing. We walked together over to our relative’s house for dinner. Once we got there, he picked up my daughter, threw on her backpack, and walked off as if that is what you did with every baby. Mind you, my nephew is 15. Lyra loves him and just sat on his lap for about 45 min while they took silly pictures on snap chat. 

While it isn’t a moment, the process of getting here, to Hawaii, was more of the same. People look at her as a cute, fun, good baby… With an attachment. I have learned it is NOT that people don’t see her feeding tube. They see it, and even ask about it. People don’t focus on it. It’s a footnote for them: important for complete understanding, but not worth having in the main text. 

With that in mind, it is time for us to enjoy some more sunshine.

Nico and Lyra chillen
Lyra and Grandpa by the Pool
Lyra won’t take a bottle or drink anything she is supposed to, but she will try to drink your beer. Dont worry, we disnt let her have any.

1 year and many adventures

1 year and many adventures

Lyra turned 1 year old 4 days ago. I wanted to write some inspired post about the bad, the ugly, but most importantly, the good. Unfortunately I wasn’t feeling very inspired. Things were stressful and Lyra wasn’t doing so hot. To put it bluntly, she needed to poop and couldn’t. We ended up taking her to the local branch of our children’s hospital thinking it would a quick fix…. But things never go as planned with Lyra. After a night in the emergency department we ended up inpatient at the main hospital… 

The day after her birthday. 

At this point I wanted to write something witty about basically spending her birthday in the hospital, but she nose dived and I didn’t have “witty” in me. By the third morning I was mostly just feeling desperate as Lyra was not getting better. At this stage they were talking about placing an NJ tube to try to get meds to stay in her and attack the problem from the top and bottom. She was in pain and miserable and I was one sad mama.

Then, as quickly as she went down hill, she bounced back! All of the sudden she wanted sips of water. We tried putting pedialyte through G tube, negating the need for the NJ (yay!!!). She started playing, chatting, and pooping without vomitting!!! Yesterday she played all day and had no interest in napping.

So, we celebrated her birthday. Was it idea to do it in the hospital cafeteria? No. But my family has a different perspective on “ideal” when it comes to Lyra. “Ideal” for us is that she is happy and here. And really, that is what we were celebrating. 

My mom cooked a great dinner, the fam loaded up a few cars (there were 9 people) and made the trek down to Children’s. My husband’s parents were in town too, making the total number around the table 14. Lyra wore her birthday dress, hat and bib (even though she really couldn’t eat), and we all just celebrated her being here with us. She even had a little taste of frosting. 

So here’s to my little fighter who is always keeping things interesting 

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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When Mommy Can’t Make it Better

When Mommy Can’t Make it Better

When Mommy can’t make it better, she cries

You might not see it, but she does

Sometimes there is nothing she can do

She can’t change your DNA or how you grew in her belly

She can’t get the IV for you

She spends hours agonizing how to feed you…. but you can’t keep it down

And it breaks Mommy’s heart that she can’t make it better

Mommy can’t sit under the scary machine

Mommy can’t go under the surgeon’s knife

Mommy can’t fix your brain, heart, kidneys, liver, or eyes

Mommy can’t eat for you

Mommy can’t help your body move the way you want it to

Mommy can’t make it better… and when Mommy can’t make it better she cries…

And then Mommy gets up

Mommy can’t make it better, but she can hold your tiny hand while they place the IV

Mommy can keep trying differnt ways to feed you

Mommy can sing to you under the scary machine

Mommy can hold you when you hurt and rock you when you cry

She can fight for you

Mommy can find ways to help you move

When Mommy can’t make it better…

It’s hard for Mommy…

But Mommy will always be there

You will never do this alone… and neither will Mommy

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How to survive hospital stays (Part II)

How to survive hospital stays (Part II)

So, we are still in the hospital. Lyra is doing much better and they started her on fluids through her g-tube.  She isn’t getting 100% formula yet, but she isn’t puking! We will likely be here a few more nights. In the spirit of having to live here a little longer, I thought that I would share some additional rules for surviving a hospital stay.

  1. Invest is a good blow up mattress- I cannot say enough about this. My mom bought be a Serta Raised Air Mattress with Never Flat Pump. It is life changing. No longer am I waking up Lyra in the middle of the night because I have to re-fill the mattress.  Plus, it is SO much better than sleeping on the bench or in the sleeping chair. I can’t say enough about how this has changed the quality of what little sleep I get.
  2. Bring a pillow from home – Hospital pillows SUCK!!! A million people have used them and they are little better than a folded up thin blanket. Plus, they are covered in plastic, so they make a ton of noise when you move. I am a fidgety sleeper, so this is a problem.
  3. You can make (reasonable) requests – this is better done with examples.
    1. Signs on the door – Lyra is a notoriously light sleeper. This is a problem when you have people coming in and out of your room all of the time. Now, I can’t stop the people coming in, but I can stop HOW they come in. Lyra has a note we put out that says “Baby sleeping. Please enter quietly.” Nap time has improved dramatically. I have also had to add, “Please whisper inside the room. Lyra is a very light sleeper.” This was added because her night nurse keeps waking her up.
    2. Modifying rounds – You can’t stop nurses from checking on your child and doing vitals every 4 hours. However, you can modify the timing and exactly what vitals are taken (so long as your child has been stable). For example, they normally start to round at 8pm. However, that is around the same time I get Lyra down. I often ask if they can do her last (they get to her around 9-9:30pm). This means she is more deeply asleep and less likely to wake up. Also, sometimes I ask if they can skip her blood pressure for the 8pm round. Since Lyra has had a stable blood pressure, it is never an issue. This can also be useful for naptime. If your child is taking a nap, often times they can wait an hour or so to do a vitals check.
    3. Getting a new nurse – If you don’t feel like the nurse is listening to you, or if the nurse isn’t meeting your child’s needs, you can request a new nurse. Just make sure your demands are within reason. They can’t be with your child 100% of the time and sometimes it takes them a little time to get what you need. However, if you ask for more formula and it’s been an hour, that is not okay.
  4. Have a drink… and I don’t mean water – When my family brings us dinner, it often includes beer or wine. Should we technically have it in the hospital, probably not. But, we aren’t getting drunk and one drink just takes the edge of the nerves a bit. It’s okay. No one will judge you.** Now, I may have taken this a step further the other day. On Sunday I stopped by my sister’s house to soak in her giant bath tub. My neck and shoulders were killing me and I only have a dinky tub at my place. The best part about Spa Short is that the bath also came with a rum and diet coke…. at 10:30 AM. Don’t worry, it wasn’t strong and I only had one. However, I felt SOOOOOOOO much better afterwards.
  5. LEAVE THE ROOM – To be honest, I am horrible about this one and my poor husband pays for it. I end up in a really bad mood and totally falling apart sometimes. Seriously though, leave the baby with a family member or a nurse (the nurses LOVE a chance to hold/play with the babies), and take a walk. Sit outside or by a large window. Drink a cup of coffee/tee (I think they might frown upon a beer in the hallway). Make a phone call to a friend and talk about anything other than why you are in the hospital. Watch a short show on Netflix. Just LEAVE the room!

Those are the big tips I can think of right now. At the moment Lyra is asleep and I should follow her example.

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** Okay, there was 1 time that I judged about drinking at the hospital. I was waiting for a regular appointment with one of Lyra’s doctors. A couple with two kids came into the waiting area and sat near by. I heard the mom say to her boyfriend, “Are you thirsty? I have some water.” He replied with, “Naw, I’m good.  I just finished that Smirnoff.”…… Classy!

14 Nights

14 Nights

Tonight is the 14th night. I have mixed emotions and I am also emotionally drained. I am not sure how that works, but there it is.

So, how is Lyra doing? She is doing okay. We have gotten her to a point where she can tolerate enough formula to stay hydrated (yay!). However, the calorie count remains elusive. We are making progress though. She is now on a formula mix that gives her 23 calories/oz. We need to get her up to 24 calories/oz. That little tiny change may not seem like much, but for Lyra it seems like the difference between drinking skim milk or heavy cream. The process of building her up is agonizingly slow. In the past they have let us go home to build things up on our own, but they don’t want to do that this time. This time they feel like she needs to prove herself. To be honest, we don’t want to take her home unless she really can tolerate things.

I am hopeful we will be home by Wednesday, but there are no guarantees.

There are many things I miss being in the hospital. Tonight I missed celebrating my niece’s birthday. I miss sleeping in a bed that I don’t have to refill every few hours. I miss sharing a bed with my husband. I miss my dog. I miss playing on the floor with Lyra. I miss cooking dinner. I MISS BATHS!!! I miss going to walks and just doing normal daily stuff.

But I have found joy in some things that have happened while we have been here.

Lyra has started to babble. This is a major milestone for her and yesterday she said MAMA. Well, it was more like, “mamamamamamamama,” and she kind of sounded like a robotic frog when I recorded it… but she said it! The babbling is really fun and cute. I get that she is late doing it, but I don’t care. Also, Lyra celebrated her first Easter. While some might think it is sad that she celebrated it in the hospital, it was really a super nice day. My family came out to the hospital and brought a great dinner. We got to celebrate it together and Lyra got to wear a cute dress. She didn’t even puke on it!

It was a very special and happy holiday, and I am grateful to have such a wonderful family.

So, things aren’t perfect. We may, or may not, go home on Wednesday. But right now Lyra is sleeping, and I should follow suit. Tomorrow will be another day of emotional ups and downs and need all of the rest I can get.

aaaaaa

Easter Dinner wore her out

Night 11 and counting

Night 11 and counting

Tonight is night #11 in the hospital. I left for about 30 minutes today to pick up lunch. It’s the only time I have left. We are finally making some progress, but it doesn’t make any sense and it is a little frustrating. Feeding Lyra through her J-tube was a giant disaster, to say the least.  She just couldn’t tolerate it, and actually did worse than she did being fed into her stomach. It’s not logical, but it is what happened. So, now she is back to being fed via a G tube.  She is making very slow progress, but it is progress.  At this rate we will be out of here in 3 days. The problem is, we are back where we were a month ago. She is still fed via a G-tube, and we feel like it is a matter a time before we end up in another cycle where she stops tolerating her feeds. The doctors here are amazing and have tried everything they can think of. We even did a brain MRI to make sure she did have pressure causing nausea (a realistic risk with her). So far, we have no answers. The best we can do is hope that this lasts long enough for her to grow. As soon as she turns one I am hoping to move her to a blended diet. Some parents, with kids like Lyra, have said that their children do much better on a blended diet. Luckily it sounds like the people at this hospital are big fans of it. So, here’s to hoping.

The Limits of Medicine

The Limits of Medicine

One of the most common complaints I hear is, “it’s seems like the doctors aren’t even trying to find out __________”.  Believe me, I understand where they are coming from. However, I also recognize that there are limits to medicine and sometimes it is more art than science. Maybe I have a different perspective because I grew up around medical professionals. I have also grown up around teachers, and they will always tell you that works for one child does not always work for another. Sometimes doctors don’t know and there is no test that can find the answer.

Now, I also understand how frustrating it is. Even knowing that doctors do not always have the answer, sometimes it really gets to me as well. This is how appointments go with Lyra:

  • Genetics: “We have no idea what the future will hold for her. She is an interesting case. She will have disabilities, but we have no idea what those will look like.”
  • Cardiology: “Well, her heart isn’t normal, but it seems to be functioning okay. We are just going to watch it and see.”  Me: “What does that mean in the long term/ bigger picture?” Cardiology: “We have no idea.”
  • Urology: “Her urethra is dilated, but she isn’t refluxing into the kidneys.” Me: “So what does that mean?” Urology: “We don’t know, but we will just have to monitor it.”
  • Ophthalmology: “Her optic nerves are enlarged.” Me: “What does that indicate/mean?” Ophthalmology: “We have no idea.”
  • GI: “We have no idea why she doesn’t tolerate her feeds. It makes no logical sense.” (BTW, I actually really like her GI doctor because he is bound and determined to find a solution, even if it isn’t logical.)
  • Neurology: “Well her brain isn’t normal and we don’t know why.”
  • ENT: “I feel like we must all be stupid. Like we are missing something. It just doesn’t make sense.” (These were his actual words)

There are a few more, but you get the idea. To be honest, sometimes I leave these appointments and cry. I try not to do it in front of Lyra. Even though she is a baby, she doesn’t need to see how sad this makes me. I want to be able to fix SOMETHING, but I can’t. I want to know what to prepare myself for, but there are no answers. I want to know why one day she eats a few oz by mouth, and the next day she pukes if I have spoon in my hand.

Trust me, the doctors aren’t being lazy. They talk to each other and to other members of their departments. I think almost everyone in GI at the hospital knows Lyra’s case at this point. I see the look on their faces that says, “how can I tell this parent that I have no answers for her?” I always tell them it’s okay that they don’t have answers. No one does. But it still breaks my heart a little bit.

Right now we are back in the hospital, and we have been for a few days. Once again, Lyra isn’t tolerating her feeds. We even put in a new tube called a GJ (a link with an explanation is below). We feed directly into her intestines, and yet she still throws up. She throws up enough stomach bile that she actually manages to become dehydrated. She is doing okay, but we can’t quite get her feeds up to the point where she is fully hydrated or getting enough calories. We have no idea how long we will be here. No one has answers, but everyone is trying. The GI nurses who see her outpatient even came by to say hi and check on her.

I guess my point is, it’s not easy, and people need to remember that medicine doesn’t have an answer for everything. Sometimes we just have to keep trying and hope that eventually something works. Or, keep watching and hope that everything works itself out.

CHOP – Low Profile GJ Tube

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Wagon ride down to the cafeteria for lunch with Mommy and Daddy

Getting Lyra to Grow

Getting Lyra to Grow

Getting Lyra to grow has been a tough process. The problem has always been being able to feed her enough calories, and getting her to keep them down. I like to think of her daily feeding like baking a complex dessert. It takes timing, attention to details, and a bit of luck. Some days things go really way and you end up with a beautiful souffle at the end of the day. Some days you burn the milk, kill the yeast, and forget the vanilla.  Other days you think you did everything right and you end up with bubbling yuck on the bottom of your oven.

Lyra is fed 21 hours a day. She likes eating solids, but only at certain times, and she will only take 3-4 bits. She has been into her bottle recently as well, but we really have to limit how much she will take at a time. Her stomach does not empty at a normal rate, hence why she gets a slow drip throughout the whole day. Even with that slow drip, her stomach becomes overwhelmed and she starts to throw everything up, quickly landing us back in the hospital.

Recently Lyra has not been growing. She has totally fallen off the charts for her height and we have not been able to increase her formula intake enough. She just can’t tolerate more in her stomach. This means we are heading back into the hospital for a new type of tube. This one is called a GJ tube. It has two ports: the G port feeds right into her stomach (like her current tube), the J port bipasses the stomach and goes into her small intestine. The hope is that we will be able to alternate using the G and J ports so her stomach will get a sufficient amount of rest. This may mean that she is able to tolerate more by mouth!

She basically has not grown in 4 months and this is our best bet. I am trying not to be too discouraged about having to put her back under. I know this is what is best for her, but it is never easy to put my infant under anesthesia. Hopefully after all of this she will finally fully outgrow her 3-6 month clothes!