14 Nights

14 Nights

by Jaime S. G. ♥ 1 Comment

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

by Jaime S. G. ♥ 0 Leave a Comment

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

by Jaime S. G. ♥ 0 Leave a Comment

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

by Jaime S. G. ♥ 2 Comments

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!

The Things People Say

The Things People Say

by Jaime S. G. ♥ 1 Comment

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

by Jaime S. G. ♥ 0 Leave a Comment

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

by Jaime S. G. ♥ 1 Comment

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 __________

by Jaime S. G. ♥ 1 Comment

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

by Jaime S. G. ♥ 0 Leave a Comment

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