It’s been a challenging week, but Lila is doing pretty good. She has reached somewhat of a plateau in her progress as far as her lungs are concerned … meaning that she’s still on the high frequency jet ventilator. We, of course, hoped she’d make her way off any type of ventilation within a few days, but she’s telling us she needs more time. As long as she’s on the jet, we cannot hold her. I can’t even describe what it feels like to not be able to help your baby, hold her or kiss her. We haven’t even had the opportunity to take that obligatory first family photo yet.
Lila’s oxygen needs are averaging about 30 percent, sometimes higher when she’s being bothered. She’s doing VERY well with her feedings and gastrointestinal progress. Yesterday she weighed 4 lbs. 1 oz., but she’s still retaining a bit of fluid. The nurses say her chest x-ray looks a little “wet.” I’ve expressed my frustration with Lila being held up with no major improvements and still on the vent, but Dr. Perdue reminded me that nutrition is usually the biggest obstacle in the NICU and Lila is doing great, thanks to my success with pumping. In order to heal and grow, babies need good nutrition, so at least we have that going for us. We need to continue to be grateful for where she’s at and remember that slow and steady wins the race.
Her bilirubin levels increased yesterday, so she’s back under the phototherapy lights. That’s really no big deal. She also got her splint to improve her left foot. It already seems to be doing its job and she doesn’t seem to mind it. Additionally, the nurses do range-of-motion movements with her during her cares to improve her contractures.
Our experience at Children’s so far has been fantastic. The doctors and nurses are wonderful … well, most of them. I ended up asking for one of the nurses to be taken off of Lila’s case. She lacked the nurturing quality that the other nurses have, both when it came to Lila and to us. One day I walked in and she looked at me sternly and said, “Well, Lila’s had an okay day,” in a tone that made me think something had happened. I waited to hear what was wrong and there was nothing wrong. I feel that when you’re dealing with fragile parents who have these sick babies, they should be greeted with a smile unless something is wrong. This nurse didn’t involve us in Lila’s care. She’d come into her room and go about things and never explain what she was doing. I’d always have to ask. She lectured me about pumping and made me feel like I was on the road to failure, when in reality, I’ve been doing quite well. One evening, Lila had spit up a lot. We’d never seen this before. It’s unusual for babies to spit up when they have a breathing tube down their throats, so I wondered if it had been awhile since she’d been suctioned. Suctioning isn’t a fun process for Lila, but she requires it about every two hours and it’s better than choking on her own secretions. We told the nurse and she came in and suctioned her without calling for respiratory therapy to assist her, which is a no-no and for which she got in trouble. She finished up and started to leave the room without cleaning up my baby. Lila had spit-up all over her cheek, hand and down her neck. I asked, “Aren’t you going to clean her up?” She handed me a tissue and I wiped her up myself. That was the last straw. I don’t think Lila liked her anyway, so we fired her.
One of the hardest things this week is seeing that my baby is uncomfortable and not being able to do anything about it. Lila gives us certain signs to let us know that she’s uncomfortable or in pain. One of the days that she had that awful nurse she was so restless. Her heart rate was elevated and nothing worked to comfort her. I seriously think it was the nurse, because the next day, Lila was much better and didn’t require medication all day.
It was also time to move her fluid/medication line from her belly button to a different location. They don’t like to leave lines in the belly button for much more than a week, because of their close location to the liver. It can be dangerous if they move. So they tried to put it in a different location — her wrist, leg, etc. After four pokes, no luck, so my poor Lila had to have the IV put in her head. It looks awful. I know it probably doesn’t hurt her and I’m told it’s the safest location in terms of her not disrupting it as easily as if it were in her arm. Still, it’s not easy to see your baby with a needle in her head. She’ll be able to get this line out when her feedings increase. I have no idea how many days/weeks we’re talking about. It all depends on how Lila does with her feedings. Once she’s where she needs to be with feedings, they can stop giving her fluids, or as I like to call it, Baby Gatorade.
Dr. Hoekstra is with Lila this week and I’m very excited about that. There seems to be a buzz about him and he was Lila’s doctor the night she was born. The nurses tell me he’s going to be very interested in Lila’s progress, so I can’t wait to hear what he has to say. The night she was born, Dr. Hoekstra promised me that our baby would survive. Later, another doctor couldn’t promise that, so I’ve held onto Dr. Hoekstra’s words ever since.
As for me, there are good days and bad days. My Mom left on Tuesday and Tyler went back to work, so it was the first time I had to do everything by myself and it was overwhelming. That was a tough day. Recovery from 13 weeks of bedrest is more difficult than I thought. My back is in severe pain if I stand too long. My feet hurt all over. They feel like a giant bruise. Pumping is a full-time job, and between twice daily trips to the hospital, I haven’t even begun to tackle household chores. We got an offer on the house (yes, we’re trying to sell our house right now — CRAZY), so I’ve been gathering documents for that. Yesterday, I ran a few errands, including a brief trip to the mall to get my phone fixed and see Tyler’s new store. Seeing all of the new fashions in the windows and the Halloween stuff on display were just more reminders of how much time I was away from life this summer. I missed an entire season. Yes, all worth it for the life of our beautiful daughter, but at times, it’s just difficult to process what I’ve been through. Then to think that that was the easy part. We’re in the throes of something much more difficult than laying in bed.