Let’s Call Today a “Learning Experience”

Let’s Call Today a “Learning Experience”

Today was ….. interesting….. Lyra has a follow up appointment with ENT at Children’s Hospital.  There had been a little confusion because we thought the appointment was on the 28th, but when we received the phone call to confirm it, we double checked. The office said the appointment on the 28th had been cancelled and her appointment was, in fact, on the 22nd (today).

So, my mom and I prepared. The goal was to be out the door by 10 AM. WE MADE IT! Once we got down to the parking lot, Lyra puked….. So, my mom did a field change in the car while I ran the barf cloths back up to the apartment. After all was said and done, we took off by 10:25ish. We still had plenty of time to make it to our 11:20 appointment.

We get to Children’s and realize that the stroller in in my husband’s car. I ended up just carrying Lyra. The carseat was too heavy.

We then wait for over an hour to see the doctor.  Finally, we get called back and a nurse comes in to talk to us. Apparently, we have to see the doctor who did the surgery and that doctor was NOT in the office. Mind you, at this point, Lyra is really REALLY hungry.  So, we make a new appointment, they gave us a parking validation, and we left to give her a bottle. The good news is, she took a bottle well!

Finally, we get down to get the car to go home (we had to do valet because the parking lot was full) and the valet can’t find my car.  This is a bit more of a problem because my car is old and doesn’t have a fancy button to make it beep. They finally find my car and I am trying to set up her NG feed. While setting up the bag, two of the bottom pieces (including the piece that makes direct contact with the NG tube) fall off and land on the ground of the yucky parking garage…. Oh, did I mention we are having a heat wave in swampy DC?…..The good news is, I had an extra bag! We finally get everything set up with the NG and go to drive out of the garage. The final blow, the validation ticket we were given wasn’t working. Luckily they just let us out.

So, here is what I learned:

  • Always double check that you have an appointment with the right doctor
  • Give yourself at least an extra 30 min. when you have to drive a long ways
  • Always pack extra cloth for the baby and any other people who may be holding the baby (luckily this time she didn’t puke on either of us)
  • Pack at least 1…. probably 2…. extra NG bags
  • After all of this, go to lunch and have a nice cold sangria with your mom


Lyra’s Second Swimming Lesson with Grandma

One Step Forward, Two Steps Back

One Step Forward, Two Steps Back

It’s funny how you can go through a whole day feeling so positive, only to have everything turned upside down by a single number. When I came in this morning we found out that Lyra had lost a little bit of weight. The doctor increased the amount of milk she is supposed to take and we moved on with our day. Throughout the day she did great. She was taking more orally than she did yesterday and she didn’t have any trouble keeping down the extra volume pumped in via her NG tube. Her personality was also coming back today today. She spent a long period of time awake and checking out the world. We spent much of the day just looking at each other and making faces. She even did a little tummy time in her crib. With all of these positive indicators, I decided to stay until she was weighed again. I was really excited. We had done everything right today and she looked great.  And then the numbers came in….. 3.445 kg  (7 lb. 9.2 oz). It is a full oz less than she weighed yesterday.  She should be gaining an ounce per day, not losing it.

I just don’t understand. We are doing everything right. The surgery fixed the laryngomalacia. She is eating more AND keeping everything down. I am actually eating regular means and most of them have solid nutritional value, so my milk should be okay. I make sure to eat protein, fresh produce, and fats. Her reflux seems under control…. I just don’t get it. What are we doing wrong?  She has to do two things to be able to come home: 1) Consistently eat and keep her meals down, 2) GAIN WEIGHT. With the NG tube we have #1 taken care of. I don’t know how we will fix #2.  I don’t even want to go home tonight and see my apartment full of my baby’s things, only to know that I have no idea when she will be home again. I just want to be home and sit on my couch with my baby, husband, and my dog.

Awake and Fussy and NO BREATHING TUBE!

Awake and Fussy and NO BREATHING TUBE!

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.


Surgery it is…..

Surgery it is…..

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’s a Rough Day

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.


Where We Find Ourselves

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.

  1.  Cincinnati Children’s Hospital – Laryngolmalacia
  2. Children’s Hospital of Philadelphia 
  3. Johns Hopkins