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.
P.S. Her onsie says “Loved”, you just can’t see it.
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.
Sitting on Aunt Kristi’s Lap before Breakfast
Sleeping on Daddy in the Christmas quilt after getting her IV
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.
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.
Lyra being fed at night back when she still had an NG tube
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.