Living (at least part time) in the hospital is a unique experience. At this point, we still do not have an exact timeframe for when Lyra will get to come home. She continues to make great progress with feeding, but we are still having to utilize the NG tube. Here is what an average day looks like (starting around 12 AM).
- 1 AM: My alarm goes off telling me I need to pump
- 2 AM: I wake up and realize that I haven’t pumped. I stumble into the kictchen, grab a glass of water and the tools I need, put on my special special pumping bra, and hook myself up to be milked. While pumping I proceed to check Facebook, flip through endless tv channels, and play solitaire on my phone. This is all followed pouring my milk into freezer bags, cleaning all of my tools, and likely grabbing a small snack.
- 3 AM: Stumble back into bed
- 5 AM: My alarm goes off telling me it is time to get ready to go back to the hospital
- 6 AM: I wake up with my phone in my hand and realize that I need to get my butt out of bed
- 7 AM: Drive to Hospital
- 8 AM: Walk in and see this beautiful face
- 9 AM – 9 PM: Run through the following activities multiple times in no particular order
- Feed Lyra
- Feed Mommy
- Flip through the TV stations, decide nothing is on, turn on an audiobook, fall asleep
- Clean pumping tools (does not always come directly after pumping because I seem to be incapable of focusing enough to finish a task)
- Talk to doctors
- Talk to nurses
- Change diapers
- Fall sound asleep
- Take pictures
- Poke at Lyra
- Start blog post (it normally takes me hours to finish it)
- Call Mom (aka Grandma)
- Take 2 hours to convince yourself it is okay to leave the hospital
- 10 PM: Arrive at home and eat “dinner”. Pump, clean tools, cuddle with husband, miss my dog, and feel guilty about not being at the hospital
- 11 PM: Crawl into bed
In other words, my days are long. It’s been 8 days so far for this hospital stay. Hopefully it won’t be much longer, but that all depends on my little one. Right now we are letting her take her time to get her feet under her.
Sometimes I forget that the world keeps moving outside of the bubble I have been in. In fact, today is my sister’s wedding. She has had her own trials in life, and today she is marrying a wonderful man. Jason not only loves her deeply, he treats her children like they are his own and obviously cares for the rest of us. As an extra bonus, he has two beautiful little girls to add to the mix. We really are a “more the merrier” kind of family and we are so happy to have them officially join our crazy group.
Unfortunately, the wedding is in Hawaii and we can’t be there. In honor of the wedding (at least in my mind), Lyra is making major progress today! She is totally off oxygen and doing great with her oral feeds (aka drinking from a bottle).
Tonight, I have two things to celebrate. My baby is getting better, and we will be joining my family via FaceTime for my wonderful sister’s wedding. I am even dressing my little one in the dress she was going to wear if we had been able to go (pictures to follow tomorrow). I feel very blessed today.
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.
Some days are truly harder than others. Yesterday I held Lyra for a good portion of the day. She was cuddly and sleepy and it was nice to have that time with her while we waited for surgery. This morning is tough though. Lyra is on the same size bed I slept on in the hospital, but she is only 7 pounds. Her tiny little body is almost hard to spot since the sheets are white and she is wrapped up in white blankets with white tape covering most of her exposed face. I can’t pick her up and I am not even sure how much I can touch her.
Surgery yesterday went well. They were able to trim the extra tissue and open her airway up. However, she did need help with her breathing during and after the procedure. This morning she is still on a ventilator. That is the reason there are so many monitors hooked up to her and why I can’t hold her. During surgery they also identified an additional abnormality that may be impacting her breathing. Today she is likely having an MRI to try to determine what is causing the problem. For now, I will just sit in the rocking chair watch the monitors.
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.
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.
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
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.