Lila was pretty sleepy when we arrived this morning, and slept through until her noon feeding. We tried nursing again, and she is getting the hang of it. She still has a lot of work to do, but is grasping the general concept, which is encouraging. We did end up giving her almost all of her feeding through her tube, but she did give nursing her best try, and that’s all we can ask for.

In another hand-me-down from Cousin Gracie, this is already too small for our little monkey.

In another hand-me-down from Cousin Gracie, this is already too small for our little monkey.

We spoke with her nurse, Alyssa, today, about our concerns that Lila was breathing so fast. The nurses and doctors are aware of her doing this (I think they call it tachypnea), but we wanted to find out more about what we could possibly do to help her with this. The poor girl’s respiratory rate jumps all over the board, from 40 breaths per minute, to 130, in seconds. We know that they are watching this, as well as her blood pressure (on the high end of the normal range). There are many reasons she could be breathing so fast, so we will probably talk more with the doctors about this tomorrow, to see if we can come up with some kind of plan for helping her.

Alyssa also told us that Lila’s “heavy breathing” could also be due to the extra fluid in her body. She is apparently still puffy (Jon and I wouldn’t know, seeing as she’s looking less puffy to us now, than she did a week ago), and hasn’t gotten rid of all the excess fluid yet. I forgot to mention this until now, but Lila never lost weight that newborns typically lose after birth. Because she was so sick, and was on IV fluids, she’s only gained so far. As of a couple of nights ago, she was 10 pounds!! (She was 8lbs, 3oz at birth, we think…never got a clear answer on that.) Earlier today Alyssa gave Lila a small dose of lasix, to see if that would help her get rid of some fluid…and then she spit up almost immediately after, so we weren’t sure if it worked or not. But we think it had some effect, as her diapers were heavier than they have been, so that was good.

We decided to try to bottle feed her for her 3pm feeding, to see if she’d take to that better. We are using Dr. Brown’s bottles (for anyone interested), and have heard great things, so thought we’d give it a shot. She wasn’t a fan, and just kind of sat there while Jon tried to feed her, huffing and puffing away through her nose, with the bottle in her mouth. We didn’t want to stress her out over this, so resorted to the tube after giving it a go. She did, however, stay awake in between her 3pm and 6pm feedings, for the most part, which is the most we’ve seen her awake yet.

While she was awake this afternoon, my brother and his girlfriend Leigh stopped by. Leigh hadn’t met Lila yet, so it was great that she could. Lila was pretty content and chill while they were there, so they were both able to hold her for a little bit. Still, we had to be super careful not to rile her up, as she still tends to spit up a lot after eating. But it was great that they were able to see her awake, and spend some time with her.

Bren

After Bren & Leigh left, we just sat with Lila, who was enthralled with this princess thing the NICU attached to the side of her crib. I just sat with her and stared at her while she stared at that, until her next feeding. The time just flew by.

Just before we started to feed her for her 6pm feeding (tube again, we figured she’d had a long enough day, and she was starting to get sleepy), Jon and I got to talking about her resp. rate again. We were wondering if it could be part of the reason behind her eating issues (have you ever tried to eat when out of breath? It can’t be easy), so thought we’d just talk it over with Alyssa. Alyssa spoke with the Nurse Practitioner who was on duty, and they decided to order a chest x-ray, just to see if Lila had any fluid in her lungs.

We got the x-ray results back very quickly (in about 15 minutes!), and found out that her lungs were indeed “hazy”–which indicates that she does have a small amount of fluid in them. This does have to resolve itself on its own, but now we know that that could be part of the cause of her rapid breathing, and can keep an eye on it. Lila is going to have her blood work done again tomorrow morning, including her electrolytes, and if those look good, the NP will try giving her more lasix, to see if we can get rid of some more fluid. We can’t give her the lasix if her electrolytes aren’t great, because it could make her feel sick, and we certainly don’t want to do that.

Overall, I think we had a good day. It was so wonderful to spend some quiet awake time with her, and to have a day fairly free of tests and exams. We are trying to maintain our positive outlook on things, as frustrating as it may be sometimes. We just think back to how sick our little girl was, only a week ago, and what great strides she’s made this week. Many of her doctors have also reminded us of this–Lila was very, very sick, when she arrived at Children’s on February 27th, and they think she’s doing great for someone who has gone through what she has. And we just have to remember that even though she looks perfect to us, she has been through a lot, and needs time to heal.

Jon came up with the title for this post (I’m outing him…as this is a Faith Hill song…sorry, honey). Jon and I have to remember to breathe, and just let Lila do what she needs to get better. And Little Miss Lila needs to just calm herself, and breathe. Slowly.

Awake

Good night, Little Lila, we love you.

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