The Things People Say

The Things People Say

This week is Feeding Tube Awareness Week. In honor of that, I have been trying to educate those around me.  I asked a number a group of caregivers (parents/grandparents/foster parents) to share some of their stories with me. Today’s topic is about the things people say to us and to our children. Even when people mean well, their words can be incredibly hurtful. These things have been said to us by strangers, family members, friends, and medical professionals:

  • “Have you tried letting them get hungry?” or “If you just stopped using the tube I am sure they would get hungry enough to eat.”
    • Many parents posted versions of these two comments. Some of us (myself included on this one) watched our children almost die because medical professionals didn’t believe us that our child wouldn’t eat. They don’t necessarily get hungry,or when they do, our children don’t eat enough to survive. If it was that simple, they wouldn’t have a tube.
  • “Did you try breastfeeding?”, “So you don’t breastfeed?”, or “If you just breastfed your child wouldn’t have ended up needing a tube.”
    • Breastfeeding is a VERY sensitive topic for this crowd. I think I can safely say that almost all of the moms who were able to tried to breastfeed. If we couldn’t do that, we at least tried to pump to give our children breast milk. Some of the moms spend months pumping. Some, like me, had no choice but to switch to formula. We all feel like the whole “breast is best” thing has been shoved down our throats, and we feel incredibly sad and guilty that we did not to experience that with our children.
  • “Have you tried giving them _____?”, “I had a picky eater. I gave them _____ and they started eating.”, “I bet I can get your child to eat.”, “If you just gave them kid food, they would eat.”
    • Don’t you think if it were as easy as giving them a different type of food we wouldn’t have ended up with a tube?
  • “So when are you taking out the tube?” or “Can you please remove the tube for family pictures?”
    • For most of us, we have no idea.  The answer may be never. That is okay. Our child is here. Isn’t that enough?
  • “This is disgusting. You shouldn’t be doing that in public.”, “Can you please feed your child at home, before you come over?”
    • I was amazed at how many parents said they had heard this when feeding their child in public. Breastfeeding moms, you are not alone.
  • “What is wrong with your child?”
    • This is one where I know people mean well and are curious, but there is a better way to say this. One mom explained perfectly why this is so hurtful.  Her daughter is a little older and when people say this her daughter hears, “something about me is bad/wrong.” These kids already know they are different and many struggle with confidence. Instead, you can ask the parent or child what the tube is. You can ask why they have a tube (many people are more than happy to educate about their child). Bonus points if you throw in a comment to the child -if they are older- like, “I bet that tube helps make you big and strong!” Make it a positive thing, not a negative one.
  • “The tube is just such an inconvenience.”
    • This “inconvenience” saved our children.
  • “I wish my kid had a tube. It would make dinner time/giving medications/etc. so much easier.”
    • There is nothing easy about having a tube and none of us have a happy story about ending up with one. Also, there are many other things that come with tubes: reflux, vomiting, chronic constipation or diarrhea, etc. While tubes have saved our children, we do not wish this upon anyone. Although, a little piece of me does recognize that it is nice that my 9 month old does not spit her many medications back at me.
  • “I will pray that he/she gets better.”
    • This is one I personally do not have any experience with, but a number of parents posted it, so I am sharing. From what I understand, their problem with this comment is that, in the parent’s eyes, the child is just fine how they are. They are happy and loving kids who are just different. Some of them won’t “get better” because they have a genetic disorder. There is no cure for genetics.
  • “Your child looks so healthy. Are you sure they need a tube?”
    • The tube is why they look healthy.
  • “I think the tube is just a crutch.”, “If you just took the time to feed your child, they wouldn’t need a tube.”
    • Yes, we are such lazy parents. That is why we never sleep more than a few hours at a time(feeding also happens all night for many of us), we are always running to doctor and therapy appointments, we spend days in hospitals/ERs with our children, and hours researching/asking other parents for solutions to challenges we are having. Yep, that’s it. We are too lazy to take care of our kid…
  • “If she eats by mouth, why do they need a tube?”
    • Some kids, like Lyra, simply don’t eat enough. They are working on it, but until then, they need a tube. Also, some kids have medical conditions where they need medications that only work correctly when delivered directly into stomach or intestines.
  • Saying nothing at all and just staring.
    • Our child is not a sideshow. Either ask us a question or stop staring.

Okay.  Enough with the negative stuff.  This isn’t everything, but you get the idea. Here are some positive things to say, especially if you are curious:

  • “Can I help you? Do you need an extra set of hands?”
    • Especially when something is going wrong during a public feeding, this is SUCH a blessing. You have no idea how much it would help to have an extra set of hands when setting up a feed in public. Most of time I end up feeling slightly frazzled when doing it, so I would love it if someone offered to keep something from falling/spilling.
  • “What is your child’s story?”
    • The vast majority of us are happy to educate you about feeding tubes and how our children ended up with them. Our kids are little fighters and we are proud of them.
  • “Is it safe for your child to eat by mouth?” – “Do they eat anything by mouth?”
    • This is always a great question before offering a child food (like at a family dinner). It’s just respectful and keeps everyone safe/happy.
  • You are allowed to be curious. Just ask us about our children. Like I have said before, we are happy to educate.

 

 

Standing on her own two feet

Standing on her own two feet

It’s official, Lyra can stand on her own (with some support from an object). While this is a major milestone for any child, this is truly amazing for Lyra. Lyra has missed so many other milestones. She still doesn’t use her hands and arms well, and she still does not roll from her back to her stomach (she is close). But, if she holds our hands, she can pull herself up and stand!

This is what I am choosing to focus on today. I feel that many parents of special needs children do this. We fully celebrate the milestones our children reach. Lyra goes home from the hospital tomorrow. While we have been able to get her hydrated and greatly reduced her throwing up, we have not found a solution that stops the puking. We also do not know 100% why she is throwing up so much. The doctors have theories, but there really isn’t a test that can provide us with definitive answers. I am excited to go home, and I am worried that we will just end up right back here. It is a constant rollercoaster.

But today she stood on her own two feet. My little girl is defying the expectations the original geneticist gave us. She is a loving, engaged, active, strong little girl. Her tummy just doesn’t work quite right.

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P.S. Her onsie says “Loved”, you just can’t see it.

The Third Night

The Third Night

I don’t know why, but I always find the third night in the hospital to be one of the hardest.  Mark and I trade off nights, so it’s not like I have had three nights in a row. For some reason, I just find myself a little more restless. Yes, Lyra is back in the hospital. We ate breakfast Christmas morning with the family, opened presents, then drove to the ER.  It’s not like we knew she needed to go to the hospital when we woke up Christmas morning, but we knew she wasn’t doing great. She hadn’t been doing great for awhile. However, once she was throwing up when we weren’t feeding her at all, we knew we had to go in.

So, here we are again.

At this point, some of the nurses on the floor know us from our last stay. At what point do you get a parking space? We were just here a month ago.

This time it looks like the doctors may try something new. The hard part is, no one really has an answer for us. We have no idea why Lyra stops tolerating her feeds. We have no idea why she won’t eat by mouth. The answer we most commonly get is, “she just needs to get bigger.” But, how can she get bigger if she just keeps throwing up? It doesn’t seem like anyone has a good answer for that. As frustrating as that is, it seems the team we are working with now wants to do more than just get her to “stable enough” and send us home to figure things out for ourselves. We may be changing the type of feeding tube she has (if she is big enough), and they aren’t going to send us home without solid confirmation that she is tolerating her feeds really well. As much as I would love to be home, this is where she needs to be.

And we really did have a wonderful Christmas morning.

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Sitting on Aunt Kristi’s Lap before Breakfast

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Sleeping on Daddy in the Christmas quilt after getting her IV

Lyra is __________

Lyra is __________

I have recently noticed that I often describe Lyra by her diagnosis. When I introduce Lyra I frequently only mention her age and the negative things: she doesn’t eat, she is very small, she had a feeding tube, she has two rare genetic disorders, etc. I think this is in part because I spend so much time introducing her to doctors. They want to know all of things about her.

But Lyra is more than her diagnosis. She is more than her complications.

Sometimes as a mother I get so focused on what is wrong with Lyra, I forget to focus on what is right. She is a happy, loving, joyful child. When she smiles, she does it with her whole body. She scrunches her face, arms, and legs all at once. She loves her daddy and is mommy’s little girl. She is curious and carefully watches the world around her. She soaks it all in and loves to be around people. While she comes with a long list of difficulties (many of them not unique to her), Lyra also brings joy to our lives.

So one of my many goals is to do a better job introducing Lyra and not her diagnosis. She needs that example. As she grows, she needs to know that she is more than what is wrong.

Fed is Best… and Beautiful

Fed is Best… and Beautiful

I have finally found a community of moms/parents I can share stories, ideas, and challenges with. It is a virtual group: a page on Facebook. But it is my lifeline and a place of comfort. Today a mom posted that her baby just came home from the hospital and part of her is devastated that her baby is tube fed. How brave of her to post what ALL of us have felt/are feeling. We all had hopes, dreams, and plans for how we would feed our babies. I wanted to be a strict breastmilk mom. While pregnant, I dreamed of bonding with Lyra while breastfeeding her. It was going to be my selfish time with her. Something only I could give her. While I was able to pump for 2 months and at least give her breastmilk, it ended up being that my milk was not what was best. As I have written previously, I was heartbroken.

Not being able to give my daughter a bottle. Praying that she keeps her formula down. Being covered in puke for the third or fourth time in a day. All of this has brought me to tears many times. All of the parents I have exchanged with in this group have been there, or are there. Some days are easier for me, and some days just suck. These people have helped me see one thing: Fed is best.

While this term has been used most recently to try to calm the formula vs. breastmilk and bottle vs. boob battles, it has special meaning to tubie parents. While part of us will always feel sad that this is how we have to feed our child, we also become overjoyed that we CAN feed our child. Because of these tubes, our children are with us. As tubie parents, we should take pride in the time and care we put into feeding our children. We know EXACTLY how much they have had to eat that day. We carefully measure each drop and monitor every bag, bottle, and syringe. We lovingly mix formulas to exacting calorie counts, prepare blended diets, or do a number of other things I don’t even know about yet because Lyra isn’t there. We lose sleep over feeding EVERY SINGLE NIGHT. We should take pride in everything we do to feed our little ones because FED is best. It is also beautiful.

So here is to my tubie family for helping me see the positive, and understanding me. Thank you for sharing your stories and your photos. Thank you for giving me your time and support.

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Lyra being fed at night back when she still had an NG tube

How to Survive Your Child’s Hospital Stay

How to Survive Your Child’s Hospital Stay

As many of you know, Lyra was in the hospital again for a few days last week. She had an infection and became dehydrated. Because she is a complex case, it required closer monitoring than an average child. She was home two days later and it doing great. During my stay I ran into a mom in the elevator. I have no idea why she was there. It really doesn’t matter. It’s never a good thing. She was obviously stressed, upset, and worn down. She mentioned that it was the first time her son was in the hospital and I could tell she felt overwhelmed. While I wasn’t able to say much to make that mother feel better, I figured I would pass along what I have learned.

How to Survive Your Child’s Hospital Stay:

  • Take a deep breath: Panicking will only make the situation harder/scarier for your child. I used to view hospitals as scary horrible places. Going into one nearly gave me a panic attack every time (even though it was never because I was sick). Oh how my views have changed. When my baby is hurt or sick, I now view the hospital as a safe place where we find solutions.
  • GO HOME!!!!!: This may sound CRAZY to many people, but trust me. If you are going to have a child in the hospital for any length of time, you need to take breaks and GO HOME. When Lyra was in the NICU at Children’s National, nurses used to “yell” at me all the time to go home and get some sleep. I get it now. By going home you are NOT neglecting your child. You are recharging. Since Lyra is older, Mark and I trade nights there. No one really sleeps in the hospital (Lyra included), so this allows us to always have one adult who is fully functional taking care of her. And, if you can’t have someone else stay there, let the nurse know. Night nurses will make sure to keep a special eye on your child if you can’t be there. I know that Lyra has been passed around and held when we couldn’t be there.
  • Get to know your nurses: Nurses are amazing people and your biggest ally in the hospital. They are your teammates and they care about your child. If your kid has a rough day, they take it home. Trust me, I have been told by nurses. Nurses will help you take care of your child beyond administering meds. For example, Lyra is a terrible sleeper, especially in the hospital. At night, the nurses will frequently rotate with whomever is staying with her. They will rock her and hold her and try to put her back to sleep so we can get a small amount of rest. Now, if you happen to not like your nurse, it is totally okay to request a new one. Not everyone clicks. It’s okay.
  • Ask questions: No one is going to think you are stupid for not understanding something. Sometimes the medical professionals get so wrapped up in their conversation they forget there is someone in the room who is not familiar with the terms. It is okay to remind them that you need an explanation in normal people terms. Many doctors are happy to explain and even draw pictures. While their picture of often about as legible as their signatures, it’s the effort that counts.
  • Know where the refreshments are: I am not talking about the cafes and cafeterias. Every wing that I have been in has an area with a fridge, water cooler, and coffee (at the very least). Make sure you are keeping hydrated and for the love of god eat something. I can’t tell you how many times I have heard a code go over the speaker system because a parent fainted. If you are on the floor, you can’t take care of your child.
  • Accept the help that is offered: You would be amazed who comes out of the woodwork. Don’t be too proud to accept food, a change of cloths, or the offer to take your dog until your child is home. I am still humbled by the outpouring of support.
  • Ask for help: If you need something, ask for it. I have had to ask for food in ERs, asked friends for help with my dog, and a number of other things. People often don’t know what to do or how they can help. You would be surprised at how willing they are to give support.
  • Speak up: If you think something isn’t right, say something. While they may be the medical professionals, you are the specialist in your child. Especially if they are non verbal, you know when your child is in pain or just not doing well.  You know how they normally act and how they communicate things. It’s okay to be “that parent”.

I am sure many of the other parents who read my blog have their own words of advice. Please feel free to add them in the comments section. While I hope no one ever has to have their child in the hospital for any length of time, know that it happens and you can survive it.

Missing, Meeting, and Managing Milestones

Missing, Meeting, and Managing Milestones

Lyra is now 6 months old. That means almost every doctor she sees wants to check in with her (Genetics is the only exception). At every appointment I am asked about her developmental milestones. Now, we knew from the moment we received her genetic diagnosis that there are milestones Lyra will miss, or never meet. We are okay with that. It’s not easy, but we are okay with it.

Missing: I figure I will start with the negative stuff. Lyra is behind physically. She doesn’t use her arms very much (although we had some progress today), she doesn’t bring objects to her mouth (she isn’t a fan of chewing on anything except her own fingers), and she doesn’t sit up on her own. There are other things too, but physical therapy is working with us every week. It is what it is and she will develop at her own rate. She may never “catch up”, but she will do just fine.

Managing: Okay, Lyra isn’t “managing” anything. My husband and I are. One of the biggest milestones we are managing is sleep (hers, not ours). Now, I have found many posts about 6 month sleep regression. I am not sure how much I buy into the idea, but it is a PAIN to put her down for a nap and at night. She has never been a great sleeper, but it seems to be getting harder to get her down. Now, before you comment that I need to let her fuss it out and self sooth, keep in mind that is not an option for us. If we let her fuss it out, she just pukes. All of the doctors and other professionals we work with do NOT recommend we let her fuss it out. So, I just prepare every night and have some good books on tape I listen to on headphones. Also, I have asked some other tubie mommies and they have said they do the something similar.

The other thing (not exactly a milestone) we are managing is expectation…. both ours and others. Sometimes it is hard to hear “she will do x, y and z” only to work with her for weeks and not see those things. However, it does make it that much more excited when she does meet a milestone. We also, sometimes, have to manage other people’s expectations and remind them that she is not your average child. But, like I said before, she will do just fine.

Meeting: Now for the really positive stuff. Cognitively, Lyra is right on! We are very excited about this…. Well, we are until we realize that is totally learning how to manipulate us (especially mommy). She’s learned to say “Mama”, but only when she cries. I am not totally sure it is intentional, but it really does sound like it and she pulls at my heart strings sometimes. She has also learned that, around the right people, if she fusses just a little, we will pick her up. We are learning when she is faking, but there have been a few times that we have realized she has made suckers out of us.

Lyra also has started trying solid foods! This comes with some new challenges, and she doesn’t take anywhere near enough for us to alter her tube feedings, but she is willing to put solids in her mouth. This is not always the case with tubie kids.

So, all in all, things look positive for our little one. While we still have struggles, some our totally average (like her current cold), she is growing and smiling.

 

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There has to be a better way……

There has to be a better way……

Lyra is almost 6 months old!!!!!!  While I am super excited about this, I am also dreading the next 3 weeks.  6 months is a major milestone, especially for doctors. This means that EVERYONE (except Genetics) wants to see her and run additional tests.  For most kids, 6 months means a check in with the pediatrician and some shots. For Lyra is means visits with:

  • Surgery Clinic (with an ultrasound)
  • Cardiology (with an EKG and an Echocardiogram)
  • GI
  • Pediatrician (with shots)
  • Ophthalmology (no idea what tests they will want to do)
  • Urology (with an ultrasound)

Oh, and she has OT and PT appointments every week (at least these ones are at home).

Instead of having so many appointments spread over three weeks, there has to be a better way of doing this. At least they could maybe coordinate their requests for tests (I have ultrasounds on two different days). The worst part is, while I find this overwhelming, when she hits 1 year it is only going to be worse. At one year she will have all of these again plus a few more.  It’s not that she necessarily has a major issue with all of these systems, but because of her genetic diagnosis she has to monitored by a few people.

There has to be a better way.

At moments like this I wish that they could just check us into the hospital for 24-48 hours and let everyone come to her. We can run all of her tests back to back and then doctors can come to her bedside for examinations and to talk to Mark and I. She would only have to do vitals once (something she hates), we would be able to stick more closely to her feeding schedule, and we would all be able to get more sleep (messing with the nap schedule is always a BAD idea). Also, if we need to add another specialist (as often happens), she is right there! It’s not hard to get another consult when you are already in the hospital. I know that it may not be realistic, but there has to be another way to do this.

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Post Nap Smiles

I Can’t Fix Everything

I Can’t Fix Everything

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)