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

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Lyra’s Second Swimming Lesson with Grandma

Home Sweet Holy $h!t We Are Exhausted

Home Sweet Holy $h!t We Are Exhausted

Don’t get my wrong, being home is great! I love not having to drive 45 min. to see my baby. I love being able to take a nap without a doctor or nurse coming into the room. I love not having an alarm go off because managed to a lead off her chest. I love not eating cafeteria food all of the time. But just because I am home does NOT mean that I get anymore sleep. Her feeding schedule is tough and very involved. Here is what my/our days look like:

  • 12-1 AM: Mark feeds her (yes, feeding takes an hour)
  • 2:20 – 3 AM: My annoying alarm goes off. I pump while I blog, then I get ready for the 3 AM feeding
  • 3-4 AM: I feed Lyra
  • 5:40 AM: My annoying alarm goes off. I start to warm up a bottle from milk I pumped at 3 AM. Then I re-set the alarm for 6 AM and pass back out.
  • 6-7 AM: My alarm goes off and I used to pretend that I was going to do this feeding because Mark has to get ready for work…. I don’t pretend anymore. Mark does this feeding.
  • 8:20 – 9 AM: My alarm goes off and I debate if I REALLY need to get out of bed yet. The answer is always “yes”. So, I get up and pump and get ready for the next next feeding. Sometimes I even eat breakfast while I am pumping during this round.
  • 9 AM – 10 AM: Feed Lyra and give her the multivitamin (that causes her to spit up half of the time) and her inhaler (this is just for a few more days post opp)
  • 10 – 11 AM: This is when Lyra normally likes to be awake and play. If I have not had breakfast by this point, it is a lost cause until after the noon feeding.
  • 11 AM: Yet another alarm goes off.  Time for Lyra to take her Prevacid!
  • 12 – 1 PM: Feed Lyra
  • 1 – 2 PM: This is my best chance to get something done. If she is still awake, we play for a bit, but normally she falls asleep. I also normally try to eat something at this stage.
  • 2 – 3 PM: Pump and get ready for the next feed.
  • 2:50 PM: Normally Mark walks in the door from work. The angles sing, the baby smiles to her daddy, and I throw a little party in my head.
  • 3 – 4 PM: If Mark is home, he feeds her and I pass out in the bedroom. If he isn’t, I feed her and try not to fall asleep while doing so.
  • 4 – 5:30 ish PM: Lyra and I pass out together in the bedroom. If Mark is home, he finishes up his work in the living room.
  • 6 ish – 7 PM: *Sometimes Lyra is hungry a little early for this feeding*. If Mark doesn’t have training her does the whole feeding while “cook” dinner. “Cooking” is a term I use very loosely. Sometimes it means order food for delivery. Sometimes it means I throw something small in the oven. Rarely does it mean using pots and pans. If Mark is training, I quickly eat dinner (read “throw something in a bowl and hope it is filling enough”)
  • 7 PM – 8 PM: Play with Lyra if she is awake
  • 8 PM – 9 PM: Pump and get ready for the next feeding
  • 9 PM – 10 PM: One of us feeds Lyra. It really depends on the day and what we have going on. However, I always go to bed after this feeding and Mark often lays with her on the couch to catch a few Z’s.
  • 11 PM: Lyra gets her meds again and we start the whole thing from the top.

There is no “weekend” schedule. There is no easier way to do it. This is what our daughter needs, so this is what we do. It is just….. exhausting. In three weeks we will re-evaluate with the doctor and see if she has gained enough weight at that point. If she has, we might be able to modify things a little. Until then, this is what we will do!

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Lyra had rolled onto her side while I was pumping. Tyke was making sure she didn’t roll any more.

****Why it takes an hour to feed Lyra: First we change her. Every time. This helps wake her up if she was sleeping. Next, she takes what she can by mouth from the bottle. She has 20-30 min to do this, but she honestly is normally done after 10-15. Eating is hard and exhausting for her. She normally only takes about an ounce (30 mL- 40 mL) and than she is done. If we try to push it (and we have), she pukes. After that, we have to prepare the tools we need to feed her via the NG tube. We then check its placement, flush it, and feed her. She gets about 2mL/min. So, if she only takes 30 mL, we have to give 55 mL via the NG tube. This takes us close to 30 min. After that we have to clean the bottle and all of the tools used in the NG feed. All in all, it takes about an hour.****