Tag: failure to thrive
It’s a Rough Day
Today I feel hopeless. Over the last 36 (ish) hours, Lyra has had more and more trouble with feedings, despite the NG tube. In fact, she has totally thrown up the last two feedings. One happened in the middle of the NG feeding and the other happened just after the feeding finished. My husband and I feel defeated and frustrated. We are doing everything right, and getting nutrients into our baby girl continues to be so challenging. If I had the energy, I would cry. It’s just about time for another feeding and we don’t know what the game plan is. Are we going to try to feed her yet again just like we have been? It doesn’t seem logical. Obviously, what we are doing isn’t working. At least if she becomes dehydrated, we are already in the hospital.
The doctors think this complication has to do with her reflux. We are caught in this spiral where her reflux makes her laryngomalacia worse, which makes her reflux worse. She obviously doesn’t feel well, but she also acts like she is hungry. It’s heartbreaking to watch feedings start with her bright-eyed and eager, only to watch the feeding deteriorate to her obviously being in pain, and ending with her throwing up. The doctors seem to have some possible solutions, but there is no simple answer. It’s not an algebra equation where we plug-in “x” to get result “y”.
Right now, I am just exhausted in all possible ways. I spent the night here last night and barely slept. Although I have tried to take naps, there just never seems to by time for me to really sleep. I would go home, but she is being evaluated by a surgical team tomorrow morning, likely before 7am. I am scared I am going to be miss them if I go home to sleep. I try to be here for every evaluation by doctors and every shift change.
Hopefully tomorrow we get a solid road map for how to deal with the laryngomalacia.
Hopefully soon she will keep a full feed down.
Hopefully Mommy and Daddy with get some sleep.
Weekends in the Hospital
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.
Where We Find Ourselves
It seems odd to me to be casually sitting by the side of a hospital crib, listening to a Harry Potter book for the 8 millionth time, writing a blog post. But, that is where I am. In my life I have spent very little time in hospitals. In fact, before going into labor, hospitals kind of freaked me out. Now, this hospital has become a bit of a haven. I know when I am here that my baby will be okay. The have the tools to give her the fluids and nutrition she needs. At home, all I had were bottles and boobs. She refuses to breastfeed and bottle feeding has become a frustrating experience (yes, we have tried MANY types of bottles with multiple types of nipples). Even though she has trouble with the bottle feeding here, they make up for it with a tube going from her nose into her tiny stomach (NG tube). When I am here, I can actually sleep. I don’t spend hours wondering if she will eat better at the next feeding. I don’t spend hours online looking for yet another type of bottle/nipple to try. Also, when she is here, we can find answers.
So, what exactly is going on?
My little one has moderate to severe laryngomalacia (links below). Basically, her larynx is “floppy” making it more challenging to eat and breath. The condition is not all that uncommon, but it’s normally not as severe as hers is. According to the ENT doctors, 9 times out of 10, kids just grow out of it. Her problem is, it takes so much energy for her to eat that she just gives up and the amount she is getting is not enough to keep her growing and hydrated. We are caught in a catch 22. To complicate issues, she also has reflux. So, not only is it hard to eat, but sometimes it is painful. At this stage she has an NG tube so that she can get the additional nutrition she can not drink from the bottle. We are working with the ENTs to determine the best road forward. Right now she is just getting stronger under the watchful eyes of those at Children’s Hospital.
Learning to Thrive
On May 11th my husband and I welcomed a full term baby girl into the world. While everyone says that being a first time parent never goes as planned or as expected, no one could have prepared us for the journey we have been on. Despite being full term, Lyra has failed to thrive, and we are still trying to figure out why. Yesterday she turned one month old. Instead of taking silly pictures with a “1 Month” sticker, I was taking her to the ER and later admitting her to Children’s Hospital for the second time. I still look a picture, but it was a quick shot in her car seat before running out the door. In her short month in this world, she has been in the ER 3 times, taken 2 ambulance rides, been in the NICU twice, and now is in the PICU. This blog is our journey, my way of updating friends/family, and my way of coping. My little one is a fighter. Now, we just have to teach her how to thrive.
Learning To Thrive 