To those who are only in this for the pictures, I apologize, there are none in this post. My phone is being weird and won’t upload photos. Stay tuned. To those who like words, read on!
Where did February go!?
It seems like we just had Hope maybe two weeks ago, but she’s already over a month old! I can’t believe we’ve been doing this NICU thing for over a month. It’s already becoming a blur.
To those who are only in this for the pictures, I apologize, there are none in this post. My phone is doing something weird, and I can’t upload pictures from it right now. Stay tuned. To those who like words, read on.
The past two weeks since coming down with mastitis have flown by and are especially blurry in my memory because I haven’t had time to adequately document all the happenings. First off, there have been way too many emotions. And not enough time or energy to process most of them.
As I recovered from my feverish delirium of mastitis, my mom casually mentioned that she would be at home the next week. I guess we hadn’t talked about that plan yet, and then I got sick, and she spent the next couple of days focused on that crisis. So my dad came to visit that weekend (and brought us a chest freezer from my sister! Yay, there’s finally room for something other than all that milk I’ve been pumping!), and he and my mom left Saturday afternoon. Then our friend Idah who had been living with us for a little over two months with her newborn moved out on Sunday. That weekend was pretty rough. There was a solid hour on Sunday afternoon while Ella napped that I just sat and cried into my pizza picturing Ella running into Idah’s room looking for her and being confused that she and the baby and all their stuff was gone. Plus my parents had just left, which always makes me weepy, and I was overwhelmed at the thought of trying to take care of all the stuff my mom had been doing for the past month. I hate goodbyes. And knowing Ella had to deal with goodbyes without understanding why was super heartbreaking. Luckily, she weathered that storm better than I did. I did all the crying for her.
Last Monday, all the emotions went full swing the other way when I got a phone call from one of the neonatologists who let me know that Hope could attempt to breastfeed starting that day! I was so ecstatic! Over that weekend I had asked our nurse if the doctor could call me Monday so that I could ask some questions about how feeding her would go once we got to that point, but I was expecting to have to wait another week before they felt she was ready to do more than non-nutritive sucking. To say I was pleasantly surprised when the doctor said we could nurse starting that day would be an understatement.
Hope started out being allowed to attempt to eat by mouth for two of her eight feedings per day, and I was instructed to pump 3/4 of the time I normally do before feeding her so that I didn’t overwhelm her with milk. One nurse/lactation consultant (LC) gave me a nipple shield (a piece of silicone that is shaped like a nipple and goes between the baby’s mouth and the mother’s breast) to maintain the vacuum seal needed for nursing for Hope since preemies apparently don’t usually do that very well at first. I tried it out that first day but didn’t want to use it, and the second time I nursed Hope she seemed to hate the shield, so I put it in our drawer and just didn’t mention it the rest of that day. The next day I started to ask our nurse/LC (a different one) if I could give nursing a shot without the shield since it seemed to make Hope so frustrated the day before, but before I could even state my case she said that this early on she doesn’t like for moms to use a shield because the babies are just practicing a little, not doing much real eating, so it’s best for them to be skin to skin with the mom to build that bond and get accustomed to the smell and taste and feel of mom, not silicone. The shield has not seen the room’s fluorescent lights since that conversation. And I’m glad!
At some point during last week (Friday?) Hope’s orders were changed to increase her to four attempts per day. I’m not supposed to attempt to nurse her for back-to-back feedings, so our current routine is that I go to the hospital to feed her first thing in the morning, mid-afternoon, and late in the evening. Then the nurses can attempt to bottle-feed her my pumped milk once during the middle of the night. I got up and drove to the hospital to nurse her once over the weekend, which I’m glad I did, but I don’t plan to do that regularly. I can’t handle any additional exhaustion right now.
Each time we attempt to breastfeed, I have to let the nurse know how Hope did. If she nursed really well, then as of Saturday she’s allowed to stop with that and not be gavage-fed (that’s when they put milk through the tube down her nose to her belly). Before Saturday, because of her age and size, the doctors wanted her to be supplemented by gavage with at least part of her usual feeding amount no matter how well I thought she ate. If I think she did ok but not awesome, they’ll give her half her feeding, and if she doesn’t nurse well at all she gets her full feed amount through the tube (which is currently 38mls, just over one oz).
Whenever Hope is awake and alert at a scheduled feeding, she nurses so well! I’m astounded by her each time she’s awake enough to really eat. So far it has not ceased to impress me that she can do that! It’s a lot of work for her to suck and swallow and breathe and stay awake all at once. She conks out so hard afterward every time. But if she’s asleep to begin with, there is not one thing I can do about it. The past 36 hours have been kind of tough for me because Hope has been sound asleep at every feeding that I’ve tried to nurse her at. I know the extreme sleepiness is appropriate for her age and that it will take time and practice for her to learn to wake up and work for her meal every time, so I’m trying really hard to not be frustrated at so many “failed” attempts in a row. But it is starting to wear on me a bit. This afternoon was the real kicker: when I got to the hospital Hope was wide awake and frustrated, rooting around like crazy. She was so ready to eat! But the optometrist was due to arrive soon for her first eye exam, so they didn’t want me to start feeding her until after he was finished, lest I get all setup to nurse and then he walked in and we had to quit in the middle. There’s no scheduled appointment time for things like that; the specialist just makes his way from baby to baby on the days that he’s at the hospital. I had to leave the room during the eye exam, which was very brief, but I guess because it’s pretty invasive it usually wears the babies out. When I came back in less than five minutes after leaving, Hope was out cold. There was nothing I could do about the circumstances, and I know it’s good that she got her eyes checked and there were no red flags concerning her vision, but I was so disappointed at the missed opportunity for her to practice eating. Sigh. Maybe tonight will be better.
The hardest parts of Hope being allowed to nurse now are the increased tiredness for me (three trips to the hospital per day instead of one), and leaving the house right at Ella’s bedtime every night. Ella does not cope well with this. Some friends suggested having Ella participating in my departure from home and care of Hope by drawing pictures for me to take to the hospital for Hope or picking out books for me to read to Hope, so we’re going to try that tonight. Hopefully it will go better than yesterday when she yelled at me through her sobs, “All done feed baby Hope!” She picked out a book for Hope this afternoon, and I sent a picture of me “reading” it to Hope while she slept to Nathanael so he could show Ella. He said she seemed to have forgotten by the time she saw the picture, but she enjoyed choosing a book and putting it in my bag!
Hope had her repeat head ultrasound yesterday since she reached one month old over the weekend. The results were normal. No bleeding in the brain, which means (I think) no sign of developmental delays at this point. At least, when she was first born and had her initial head ultrasound, the doctor told me they would repeat it at one month “to screen for delays.”
Everyone’s number one question to me these days is “Do they have any idea when she can come home?” The doctor this morning told me the majority of premature babies go home between 36 and 37 weeks gestation. She’s 34.5 now and isn’t sick, so hopefully she’ll fall within the majority.
People also ask how I am, or sometimes “So what’s new?” and a few times in conversation lately our family’s plans for travel or summer or things like that have come up. To the first, my answer is always “I’m tired.” That’s the number one thing I feel most days right now. Physical need trumps emotion. I don’t typically know how I feel emotionally. I’m too tired. What’s new? Uhhhh…. I have no idea. I cannot see beyond juggling NICU life right now. I don’t know what’s new in other people’s lives, even family, and if I did know, I forgot, because I’m tired. It’s not that I don’t care about life outside of our little bubble. I just don’t have room in my sleepy brain to keep track of more right now. Plans for.. anything? I also have no clue about this. I stare blankly at people, including my dear husband, who ask me about things beyond this week at the very latest. “One day at a time” is our motto around here. I have a very hard time even thinking about planning anything after Hope has come home, not just because I don’t know what to expect life to be like with a second baby at home or what Hope’s medical needs might be, but because I actually can’t quite imagine life without having to go to the hospital every couple of hours. I’m not sure I’ll know what to do with myself without hospital visits.
Other medical stuff/progress on her requirements to go home:
As of last night, Hope is 4lbs 5.75oz. She has to be at least 4lbs 8oz to go home (just one of several requirements).
She has to be off of caffeine (given as a respiratory stimulant) and not have any spells for 5 days in order to go home. Her last spell was two days ago, but she’s still on caffeine. It was also an eating related spell (she was nursing at the time), which the doctor said they’re not concerned about because it’s a coordination issue that she will learn. They’re concerned about sleep spells because those are what can happen while I’m washing the dishes or something and she’s sleeping in the other room, and that’s when SIDS happens.
Her isolette air temperature is gradually being weaned down; it’s not quite low enough for her to move to an open crib yet. I think she’s about halfway from where it started to where it needs to be. She has to maintain her temp in an open crib to go home.