I really need to do a better job writing down the funny things Theo says. Just recently he started using “bless you” as a verb for sneezing — i.e., I just blessyoued.
It’s so cute I don’t have the heart to correct him.
Hello? Is this thing on?
We’ve been home now for about a week and a half and things are going well. I’ve had a lot of people tell me they miss the daily Emmett posts so I thought I’d give a quick update on how things are going. I definitely don’t plan to blog every day again — there just really isn’t enough to talk about — but I do hope to keep writing regularly to capture memories, much like I did before Emmett came along.
Unlike in the NICU where things were constantly changing, life back at home is moving much more slowly and we’re settling into a busy but blissfully mundane routine. Our days and nights are filled with normal newborn stuff: Getting stuck under a sleeping baby while watching entirely too much HGTV. Getting peed on in the middle of the night because we were too slow with getting a new diaper on in our groggy state (rookie mistake!). Bouncing, rocking, swaying, shushing while trying to figure out what the heck it takes to get McScreamy back to sleep at 3 a.m. In just over a week, Emmett has suddenly become less like a sick patient and more like a typical newborn and I feel like we’re getting to know him all over again outside the rigid hospital setting, where everything is strictly measured and timed. While we’re trying to maintain some semblance of the routine already set in place, we’re following his lead more and letting him sleep and eat according to his cues and our needs.
Feeding continues to be a challenge for us. He takes a bottle pretty well now, but he seems to be getting worse, not better, at breastfeeding. When we left the hospital, his latch was good, but he simply lacked the stamina to nurse effectively for every feed. We were instructed to give him four bottles of expressed breastmilk per day, each fortified with a scoop of Neosure powder for extra calories, and were given the all-clear to nurse at his other feedings. With him eating an average of eight times per day, it meant we were doing about 50/50 nursing and bottles. We’ve had two weight checks with the pediatrician since, and while he’s gaining, he isn’t gaining as rapidly as he should, so we were recently instructed to bump it up to six “protein shakes” per day, which only leaves about two feedings to practice breastfeeding. His stamina is better, but all the bottle feedings have spoiled his good latch and he gets frustrated easily at the breast. We’re going to see a lactation specialist this week to see how we can improve our nursing sessions so we can hopefully start doing more nursing and fewer bottles. Trying to bottle feed and then pump with almost every feeding is pretty time-consuming. Not to mention our neverending dishes thanks to all the bottle and pump parts. D has been taking most of the middle of the night feeds so I can pump while he gives a bottle and we can both get back to sleep as fast as possible.
Theo has been amazing. I know we’re less than two weeks in and that this is probably the honeymoon phase, but seeing Theo’s nurturing side come out is probably my favorite part of having two kids. He loves to kiss and hug baby Emmett, and has been so gentle. He is also very proud of “his baby” and loves to introduce him to everyone. I’m handling taking care of two kids better than I thought I would too. We pulled T from daycare while I’m home on maternity leave to minimize the germ exposure to E while he’s so small. And while I had visions of chaos — either neglecting a screaming baby while tending to a needy toddler, or ignoring my firstborn while an infant consumes all my energy and attention — so far things have been going pretty well. Theo is usually happy to entertain himself while I’m dealing with Emmett, and even likes to help by grabbing my water or my phone for me if I’m stuck nursing E on the couch. He’s gotten pretty good at fetching himself a snack and he knows how to operate Netflix on his own (not sure if that’s more of a brag or a confession!). On more than one occasion I’ve let him crawl in bed with me in the mornings where he’ll play quietly on the iPad while I catch a few more Zs after being up with the baby most of the night. I’m not winning any mother of the year awards but everyone is clean, fed and happy. I’ll call that a win.
Overall things are going well. I’m insanely tired, but I’m happy. I touched on this on my last post, but it really is amazing how long ago the NICU feels already. With all the typical newborn stuff we’re immersed in, it’s almost easy to forget that he’s not in fact, a newborn. He’s a three month-old, who spent a quarter of his first year in the hospital. It feels like years ago, not weeks ago. And while I still haven’t figured out how to gracefully answer the “how old is he?” question while out in public, life just feels normal right now. And that’s a pretty big deal.
I never thought this day would come, but we are home. After E’s weight loss last night, they decided to check his weight again this morning. With his good feed volumes, a loss just didn’t make a lot of sense. Whether he managed to gain between last night and this morning or last night’s weight was off, he somehow managed to be up 22 grams this morning. So around 6 a.m. we got the official word from the doctor: we were free to go.
D came home and then I took him to work and T to daycare, and then I came back home to clean and get a few other things wrapped up. I spent the afternoon at the hospital, talked to the nurses and doctors (there were many tears involved), took some pictures, signed some papers, and then I went to go pick up D from work, and T from daycare (after nap), so we could all go back to the hospital and take E home as a family. It was an incredibly emotional experience.
It’s funny, everyone says the NICU days feel long while you’re there, but after you leave they feel like a distant memory. I couldn’t have understood while we were in the thick of things, but we’ve only been home about six hours and already I’m starting to see how that could be true. In many ways it feels like a bad dream that I just finally woke up from.
I’m going to cut this post short because I need to get to bed. And unlike in the hospital, there will be no nurses to feed him when he wakes up in a few hours. Now the real fun begins…
We’re still here. We got news this morning that they would like to keep us another day to make sure we are set up for success on the eating front. But we were told if things went well today we could go home tomorrow! E had good feed volumes today, and I spent all day frantically tying up loose ends with work. I got to the bottom of my inbox and conquered my to-do list, checking off what I could, delegating what I couldn’t, and creating a comprehensive hand-off sheet for the contractor we’re bringing in to fill in for me. I also spent all evening doing laundry, cleaning and getting the house ready. After feeling a little panicked yesterday, like I had too much left to do, I actually feel really prepared now.
And then D texted me from the hospital tonight and said E lost 22 grams at his weight check.
Eff. We won’t get the official word from the doctor until tomorrow morning, but I have a feeling they’re going to keep us another day.
There is a good possibility we are going home tomorrow. Emmett continued to average around 80 percent of his feed volume throughout the day, and even took 50 ml via breast this evening, which is better than he’s done at the breast in over a week. He did lose 4 grams tonight, though, so I’m not sure if that will prevent us from going home. The nurse tonight said they don’t count 4 grams as a loss and would label it no change, but she also didn’t seem to be aware of our potential discharge tomorrow, and she thought he was still on scheduled feedings. She also tried to get me to breastfeed when he was just calmly staring up at me and showing no hunger cues and had just eaten an hour before. I’ve never seen this nurse before and I must say I’m not impressed. She doesn’t seem like she knows what’s going on at all. Thankfully at this stage in the game, the nurses aren’t as critical anymore so I’ll just wait until I see the doctor or until the day nurse comes around 7 a.m. to figure out what’s next.
I will admit, I legitimately freaked out this evening after I got home from work, realizing that we could potentially have Emmett home this time tomorrow and I still haven’t installed the car seat base or even thought about a going home outfit for him yet. I also still feel like I have a million loose ends I need to wrap up at work and a ton of chores around the house I had hoped to finish before we bring him home. Amazing how I’ve had three months to prepare for this and it’s suddenly crept up and I have nothing finished. As much as I want him home, I would probably be okay if they wanted to hold us for just one more day!
Note: I was just notified by my mom via text message that I did not post this last night. Oops! Lots of good news below, and this morning we just got the even better news that if the next 24 hours go as well as the previous, we can go home!
Here’s the rest of what I wrote last night.
It’s been more than 24 hours on the no feeding tube trial and we’re doing well. E ended the day around 85 percent of feed volume and managed to gain 44 grams tonight, so that’s a huge win. He’s now 7 lbs 13.5 oz. I haven’t nursed him since yesterday, as I was gone for several hours today and he was sleepy the times I was there, so he’s just been getting pumped milk from a bottle. I feel like a little bit of a failure that I can’t seem to give him those numbers when I’m nursing, but I’m still determined to keep working on this. I know preemie moms who have left the hospital on bottles and fought their way back to breastfeeding and went on to have a successful time nursing. So it can be done. The most important thing is that he is eating, and minus the feeding tube. If he keeps this up we could be home very soon.
Well, we’re doing another trial off the feeding tube. We aren’t quite at 80 percent due to the nurse gavaging him twice overnight (though if you ask me, sometimes I think they just gavage him when he could possibly wake up and eat), but he’s had several full feeds in the last couple days and when he pulled his feeding tube out again today the doctor suggested we just not put it back and see what happens again. This time around, the doctor suggested that we just do one or two breastfeeding sessions per day and make sure he is really awake, and bottle feed the rest. She thinks the one or two breastfeeds per day will give him the practice he needs so he doesn’t lose the skill, while allowing him to conserve some of his energy since he doesn’t have to work as hard for a bottle. We can work on gradually increasing the number of nursing sessions per day at home, but as long as we can maintain volume, the doctor said she sees no reason we need to stay here any longer. The next 48 hours will be very telling; we’ll either go home or go back on the feeding tube.
I spent most of the day at the hospital today, and went home late afternoon, and then D and I went out to dinner and a movie (T is with grandparents for the night). Then I came back to the hospital for the night. When I got here, E was wide awake and happy and the nurse reported he had taken two full bottles while I was gone. He then nursed and got about half of his feed volume from me, which is better than average. Since we aren’t gavaging after nursing now, the hope is that he can self-regulate and wake up again if he gets hungry sooner, or possibly take a bigger feed next time. I really hope this works, though I’m trying to be realistic since we’ve been through this before.
E had a good feeding day today. He hasn’t had to be straight gavaged since 3 p.m. yesterday and he took several full bottles today. I went into the office so I didn’t get to nurse him until 9 p.m. this evening, but he took about a half feed from me, which isn’t terrible. He definitely does better with the bottles. We ended our day at 72 percent of all feeds orally, which is great! Of course, since I’ll be here tonight and most of tomorrow, the breastfeeding will bring down our average. The analytical side of me hates to see those numbers plummet on a day where I nurse more than bottle feed, but the side of me that really wants breastfeeding to work wants to practice at every chance we get. Conflicting emotions, for sure.
Either way, it’s clear that E is starting to get stronger. He was very alert during his feeding tonight and I even put him back in his crib still awake. He very well may sleep through his midnight feeding, but it’s good to be making noticeable progress. Inching along…
I had really hoped we’d be out of the NICU by the time his three-month birthday came. But here we are. Actually, we had a really interesting conversation with Dr. L today at rounds. He asked us if we were tired of being here (duh) and said while they don’t like to do this, if we were interested, we could learn how to insert a feeding tube and we could go home on the NG tube while we continued to work on feeding.
I was shocked. He was basically putting the decision in our hands when to go home. I feel really conflicted. I want him home so bad. But I want him home healthy. And bringing him home on a feeding tube would mean multiple follow-ups with specialists, possible g-tube surgery, and the intimidating chore of changing his tube ourselves (which comes with the risk of accidentally inserting it into his lungs instead of his stomach – yikes.) It would be one thing if we were facing a long-term feeding issue. But all the doctors and nurses say this is textbook for an early preemie and that he’ll grow out of it. He just needs time. I just wish I knew how much time we were looking at. Another week, two weeks? Let’s wait it out and bring him home wireless. Another month, two months? Let’s just get him home already and stop wasting time in the hospital. So after talking it over with D and the rest of the medical team, I think we have a plan: give him until 42 weeks gestation (he’ll be 40 weeks on Monday) to lose the tube. His team thinks he’ll probably figure it out before then anyway, but if not, we’ll bring him home with a feeding tube at 42 weeks. If nothing else, it’s nice to have a hard stop.
Feeds went okay today. He’s taken more feeds by gavage than usual (three toay, compared to his usual one a day), but the feeds he has done have been nearly full volume. It seems whether he takes a half feed every time or a full feed every other time, he’s still stuck at around 50-60 percent of his volume orally right now.
Anyway, with that daily update done, here’s what’s going on at three months…
Adjusted age: 39 weeks 3 days
Stats: 7 lbs 10 oz and 18.9 inches.
Milestones: As of August 1st we are off oxygen! Starting to do tummy time a few times per day.
Sleeping: Still sleeps pretty well, but I think that has more to do with him spending all his energy trying to eat. Though I still have hope we got a good sleeper this time since Theo was horrible!
Eating: The bane of my existence and obsession of every waking moment? In other words, we’re working on it. 65 ml of breastmilk plus 24 kcal of Neosure to fortify my milk, every three hours. Combination of breastfeeding and bottle feeding pumped milk (about 50/50 currently).
Personality: Is it too soon to say he is an affectionate baby? Theo was always so busy and not much of a snuggler. Even when he was an infant he was constantly moving and trying to see everything. E seems much more content to snuggle up against me. Part of that could be his prematurity. We’ll see…
Likes: Snuggling, being held. When he cries he calms down instantly when you pick him up.
Dislikes: Gas, reflux, having his temperature taken and his NG tube. Tries to pull it out often and hates having it put back in.
Mama: Still hating pumping. Still going into the office twice a week. It’s been hard to plan for things, knowing I’ll be out soon, but not knowing exactly when that will be. Starting to drop a bit below my pre-pregnancy weight, which is nice. I lost quite a bit of weight while breastfeeding T, but then gained it back, and then some, after I weaned. I’ll have to be more aware of that this time around. I’ve started losing my hair lately — I had completely forgotten about that fun postpartum side effect. When you’re pregnant you often stop losing hair (which is why pregnant women usually have great hair), but then a couple months postpartum you lose all that hair you should have been gradually losing during pregnancy. The human body is weird. Yesterday during barre I kept having that sensation that a hair was tickling my arms and I must have pulled about 10 strands of hairs off myself throughout an hour long class. At this rate I’m expecting to be completely bald in a few weeks.
Not a lot new to report today. Back when things were more critical, a boring day was a good day. Now we’d really like to see more change and more progress with feeding. We are making progress, but it’s S-L-O-W. And because I love me some data visualization, here’s what a week’s worth of 24-hour averages (calculated every three hours) looks like:
We’re trending up, but at a snail’s pace. I’m so done with all of this.