This is for the 30ish (give or take a few) nurses who have helped take care of Lra up to this point.
I love you and thank you. Now, don’t get me wrong, the doctors are great. But you were the one who rocked my two-day-old for hours in the middle of the night when I couldn’t be there. You are the one who stood vigil by her side after a scary day at another hospital. You were the one who showed me how to change her diaper without making a total mess. You were the people to show my husband and I 10 ways to feed and burp her. You were the ones who hugged me when I melted down by her bedside. You were the ones who made sure I ate and drank…. and sometimes slept. You were the ones who helped me at 2 am clean her off…. and me off….. after she puked for the 20th time that day. You were the one who stood up for me when doctors didn’t believe me. You were the one who allowed to me sleep peacefully when I couldn’t be there. You were the one who fed her patiently when I felt so discouraged. You were the one who made sure I knew how to do CPR and how to feed my baby with a tube. You were the one who listened to me when I knew something wasn’t right. You were the one up all night with her while I slept a few feet away. You were the one to put hearts on her cheeks after she had surgery. You were the one to change her diaper when I couldn’t due to tubes. You were the one who diligently checked her vital signs around the clock. You have done all of this, and a thousand other things I can not name. I have watched you take tender loving care of daughter. For that, I love you.
Jaime and Mark
Today feels like progress. I came in this morning to find Lyra with just oxygen and her NG tube in. NO MORE BREATHING TUBE!!!! She is breathing on her own, totally alert and a little fussy. Fussy is good in this case. She is sucking on her binky because she is hungry! They also started to reduce the amount of fluid going through her IV and adding breastmilk to her NG tube. I am one happy Mamma. It looks like we are going to get to leave the PICU today and move to the regular floor. Now we just have to make a game plan for her eating. Once we have that, we will have a general idea of when we might go home.
Over the weekend Lyra’s eating deteriorated to the point where all she could tolerate was a constant feed via her NG tube. This morning the ENT doctors, my husband and I decided that it was time to move forward with surgery to correct the laryngomalacia. The procedure is called a supraglottoplasty (links below). She is currently in the operating room. It is a short procedure, but the wait is killing me. It’s impossibly hard to watch a doctor carry your tiny one away to have surgery. I am currently sitting staring at the door the doctor will walk out of.
She is just so tiny….
************************* UPDATE *************************
Lyra is out of surgery. It went well, but she is on a breathing tube for now. We will be in the PICU for at least a day.
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.
- Cincinnati Children’s Hospital – Laryngolmalacia
- Children’s Hospital of Philadelphia
- Johns Hopkins