Another day down. I’m back in the NICU after about 24 hours away. I’ll stay through the night and the morning, and then D and I will trade off so I can take T to a birthday party tomorrow afternoon.
Emmett lost his IV last night, but they said he was doing so well on his feedings that they decided not to reinsert it. So there’s one less tube to worry about, at least, and now the IV sensors won’t be beeping every time the bag starts getting low. He lost about 10 grams between yesterday and today, which they attribute mostly to lack of IV fluids. He’s up to 14.2 inches, though, so he’s definitely growing. His bili levels were up again this afternoon, so he went back under the lights, and they’ll recheck his levels tomorrow morning. Things have otherwise been pretty uneventful — still going up and down on his O2 levels because he keeps either desatting or high-satting. All pretty par for the course, though.
This morning I woke up with a bit of a stuffy nose. I think it was just allergies, but with T’s runny nose yesterday I decided to play it safe and not hold him today. So D got to hold him for the first time instead. I wasn’t there since I was home with T, but he got a nurse to take a photo. Heart melted.
D’s mom came to visit this afternoon. Since E was under the bili lights instead of having his isolette covered by a blanket, she got to see quite a bit of him, though his eyes were covered by a mask the whole time.
That’s about it for today. “Blissfully boring,” as I like to say.
We have hit double-digits on days in the NICU. Here’s to hoping we don’t ever hit triple digits.
Last night and today were relatively uneventful with E again. He had a few desats (oxygen saturation levels dropping below the 88% threshold), but only one bradycardia that I’m aware of today. I held him for almost two hours again this morning (he did amazing!), and then I went home and passed D the baton. D’s dad and step mom came to visit this afternoon while I watched Theo, and then they all came home and the in-laws brought us dinner. Then D went back for the night. E got weighed again tonight and is up to two pounds! You know your perspective is skewed when that seems SO BIG! Proud of my boy. Feedings are going great. We’re now up to 12 ML every three hours, and they began fortifying my milk today with extra calories and protein to help him pack on more weight.
So, tonight was supposed to be my night to get some rest at home, but when I was giving T a bath, he complained that his penis hurt. Then after his bath, when he was going pee, he started crying and said it hurt to go. Great. Sounded like a UTI to me, so I got him dressed and loaded into the car, and off to urgent care we went. Only when we got there, urgent care was closed. (D asked me if they had “I hope it wasn’t really urgent” on the door.) I didn’t think it was quite ER-worthy so I told Theo the doctor went home and we’d have to wait until morning. His response: “The doctor was tired?” (Yes, sweetheart. So is Mommy.) When we got home, he went pee just fine and said he was all better. Go figure. I guess I’ll see how he feels in the morning and whether I actually need to take him in. I hope he isn’t starting to make stuff up for attention. We really have been trying so hard to make things as normal as possible for him throughout this whole ordeal.
In other T news, he woke up from his nap this afternoon with a runny nose. I’m really hoping neither D or I catch his cold, or we’ll have to stay away from the NICU until we’re better. That would be pretty devastating. So far it hasn’t been so traumatic to leave E at the hospital because we’re never gone for long and one of us is almost always there. Not being able to see him for several days, though? I think that would break me.
Tomorrow I’ll spend the morning with T, then D will come home and have lunch with us and then I’ll head back to the hospital for the afternoon/night. Onto day 11…
Today was a relatively uneventful day, as far as E is concerned. They increased his feedings to 9 ML every three hours. Tomorrow they’ll go up to 12 ML and will also start fortifying with a high-calorie supplement to help him put on weight. Speaking of weight, he is finally officially back to his birthweight. Actually, he’s a little above (860 grams vs 840 grams, but still rounds out to 1 lb. 14 oz.). So that’s all good news.
His breathing was a little all over the place today. For much of the day he was on 21 percent oxygen, which is essentially room air. But he had a few desaturations, so they’d turn his oxygen up a bit. But then he’d be hitting 99-100 percent oxygen (sweet spot is between 88 and 98 percent), so they’d turn his oxygen down. Repeat, repeat. It was a bit of a dance, trying to keep a balance. He had a few more brady episodes today (heart rate drops), but not nearly as many as we had yesterday. We got to do kangaroo care again today around 2 p.m. for almost two hours and it was blissful like yesterday. My sister-in-law came to visit for a bit this morning, and our friend Matt cooked us dinner this evening at our house. I’m back at the hospital and will be staying the night. It’s pretty quiet here right now and the night nurse is someone I like. Overall, it was a good day.
The one sour part of my day was fighting with insurance. I have been trying for a week to get a breastpump sent to me (thankfully the hospital has given me a loaner in the meantime). The issue is, I need a hospital-grade pump, and the insurance company seems to think that’s not necessary. It drives me absolutely batty that the people in charge of approving or denying insurance claims don’t even have the medical knowledge that should be required to do so. My insurance plan clearly states that a hospital grade pump is covered when medically necessary. And since prescribing a hospital grade pump is nationwide standard protocol for preemies — and I have a preemie — you’d think this would easily fall under the “medically necessary” category. A regular pump isn’t typically good enough when you’re trying to bring in your milk: A) by solely pumping and not nursing (nursing is much more effective) and B) weeks or (in my case) months ahead of schedule.
When I’d initially called to order the pump last Friday, they’d said they were shipping it Monday. When it hadn’t arrived by Tuesday, I called, only to find out I’d been denied (thanks for notifying me?). The insurance rep kept asking me if I had tried a regular pump first and I had to keep repeating myself that that’s not what my doctor prescribed. At one point she even asked me if I’d tried “just nursing him.” (Uh.) They told me my doctor needed to provide a statement of medical necessity – which is pretty much what I thought the prescription was, but okay, fine. So I called my doctor and explained what I needed. No problem, they’d send that over that afternoon. When I still hadn’t received my pump today, I called again. They claimed they had never received the statement of necessity. I had my doctor send it again. They still claimed they hadn’t received it. But then changed their story and said because it was previously denied, I couldn’t file the claim again for a year. I ended up escalating to a supervisor, and an hour later, they finally agreed to cover it. I’m still fuming. With everything I’m going through right now, this is really the last thing I need to be worrying about. The part that makes me so angry is you know they knew they should be covering it. I’m pretty sure insurance companies deny things and “lose paperwork” on purpose because they know a lot of people won’t fight it or will give up.
Now that I’ve gotten that off my chest, I’ll end this post on a positive note with a couple photos. Because it really was a good day overall.
Tiny hand.
Tummy time (note, despite the fact that you aren’t supposed to put infants on their tummies to sleep, it’s actually good for preemies and helps them with their breathing – just thought I’d point that out so no one worries! 🙂
Last night was a little rough. Emmett had several bradys and vagels (heart rate drops brought on by gagging/choking). He recovered every time on his own and the team says it’s normal, but no parent likes to hear their baby’s alarms going off because their heart rate is dropping. I didn’t get much sleep at all, and I was still stewing about the nurse situation. In addition to last night’s cannula debacle, she just had no bedside manner. Not once did she even acknowledge the stress I’m under, even as I was curled up in the corner, sobbing. And not once did she talk to Emmett while handling him, and she handled him a little too rough, in my opinion (of course, that could just be the mama bear in me).
The good news is, one of my favorite nurses was on today. She is just so compassionate toward me, and talks sweetly to Emmett, which is exactly what a NICU nurse should do, in my opinion. One of the first things she asked me today was how I was holding up, and when I’d like to hold him. Since they like to time kangaroo care around when they do their “cares” every three hours (feeding, changing diaper, taking vitals, etc.), we decided I would hold him after his 2 p.m. cares. They also needed to swap out his isolette, which they do once a week so they can thoroughly clean them, so we decided they’d take care of that while I held him. The type A in me likes having a plan, and the “yellow” in me (a reference my work friends will get) likes being involved in said planning. So the morning got off to a good start. We had a plan.
The team holds parent rounds every Thursday at 10 a.m. so it was good to attend that today. This was our second time attending, though I honestly couldn’t tell you what they said at last week’s because I was still in a fog, less than 24 hours after giving birth. Today’s felt much more productive. I felt like I was more of an active participant in the discussion of his care and I’m starting to understand (and speak) the lingo. It was reassuring to hear the doctor say he wasn’t concerned about the bradys and he emphasized again how amazing Emmett is doing, especially for a baby born at 26 weeks. Part of me sometimes wonders whether they say that to all the parents, to reassure them — but if so, it’s working. I felt 100 times better after attending rounds. Our Emmett is certainly living up to his name, which means “strength.” Interestingly, I hadn’t even taken the meaning of his name into account when we picked it. It’s all a bit serendipitous.
One of the things the team discussed at rounds was starting to give E more breathing independence. Because he’s been doing so well, they decided to reduce his PEEP levels (positive end-expiratory pressure – essentially keeps his lungs partially inflated, even after he breathes out). The hope is to start weaning him from some of his assistance and move toward having him doing more of it on his own, so reducing PEEP was the first step. Unfortunately, it was kind of a bust. He had a few more apnea episodes than before so they turned it back to where it was before. Not a big deal – it was still pretty early to be doing that so we’ll give it some more time and try again.
As mentioned earlier, we planned to do kangaroo care at 2 p.m. I’m happy to say, it went much better than last night. I think a huge part of that was that my nurse really took the time to make sure E was situated on me in a comfortable way, that his wires were all tucked out of the way and his head was positioned in a way that allowed him to breathe easily. She also made sure I was comfortable, with pillows propping my arms up and warm blankets covering us both. E did fantastic and I held him for two and a half hours. Like the first time we did kangaroo care, E’s breathing and heartrate were steady, his O2 rose, and he just seemed so content. I fell asleep again too. One of the benefits of kangaroo care is that it increases prolactin — which helps with milk production but also makes you feel sleepy and euphoric. It was wonderful. I could have held him forever, but I had to leave to get T from daycare at 5 and needed to pump one more time before I went. I think I’m going to try to do kangaroo care during the day from now on since I like our day nurses better than our night nurses for the most part. Having someone take the time to get us situated really makes all the difference in the world.
D is staying the night in the NICU tonight and I’m back home. Most of the time I really don’t mind staying at the hospital. The bed is comfortable enough, and I like being so close to him (and truthfully I don’t sleep that much better at home, anyway). But after last night, I think it’ll do me some good to get away for a bit and decompress. Right now I’m catching up on The Bachelorette, and I must say, it’s nice to do something mindless.
Today was a good day, followed by a not-so-great evening. I’m emotionally drained.
First, the good stuff…
This morning, after being under the bili lights again for almost 24 hours, they checked E’s levels and they were down to 1.4 (they were 7 something before). So he got to get rid of the lights — hopefully for good, this time. They increased his feedings again from 3 to 5 ML, and he’s tolerating the increase very well. He’s also pooping like a champ, which the nurses are all very impressed with! They’re also very impressed with his newfound ability to suck on a pacifier, which is pretty amazing for 27 weeks. Everyone just keeps marveling at how well he’s doing so soon, and for so young. He really is our little miracle baby.
As I mentioned in a previous post, one of the routine exams they do about a week into life with preemies is a head ultrasound to look for brain bleeds. We were told they are measured in severity from 1-4, with 1 being mild and 4 being severe. I have surprised myself with my ability to stay away from Dr. Google through this whole ordeal, so I couldn’t tell you what a brain bleed means, but I’m guessing it’s bad. Thankfully, that’s one less thing we have to worry about because his scan came back completely clear. No bleeds. That was a huge relief, but it was a pretty emotional hour for me in between the tech conducting the scan and waiting for the radiologist to give the results to E’s doctor.
Theo came to visit again today but he wasn’t as interested in Emmett this time. He was still very sweet and waved to him and blew him kisses, but he was WAY more interested in the cool chair with a table attached.
After a brief visit, I took T home and we all had dinner together, and then I rushed back to the hospital. I needed to get back so I could do another kangaroo session at 8, something I had discussed with our daytime nurse, whom I adore.
(and this is where the good turns to bad…)
When I got there, the night nurse (a new nurse I’d never seen before) practically lectured me when I mentioned wanting to do kangaroo care, saying we should only do it once a day when they’re this small. I explained to her that we hadn’t done it yet today, and that our day nurse and I had agreed that 8 p.m. would be an ideal time to do it, after they came in to do his diaper, feeding, etc., She agreed to it, but she seemed annoyed by my request, and I felt like she kind of rushed getting him out of his isolette and onto me, and didn’t even really help me with my positioning. It was still nice to hold him, but he wasn’t nearly as calm as he had been the other two times, and his oxygen levels dropped a little instead of rising like they had before. His heart rate also dropped very low at one point, briefly setting off the alarms. He recovered on his own, but it just wasn’t the blissful experience it had been before.
When I was ready to put him back, my nurse apparently was on lunch, so a nurse I’d never worked with before came to put him back and I felt like she rushed it too. She basically just lifted him off me and set him in his isolette without taking the time to make sure he was comfortable, or that his wires weren’t pulling or bunching in any way. I was particularly concerned about his nasal cannula, because the tape was pulling down on his lower eyelid so he couldn’t close his eye all the way, and the cannula was twisted to the point it wasn’t even in his nose anymore; it was just below it and slightly off to the side. When I called our nurse into the room to fix it, she said she was going to see if they had a smaller cannula. I explained that the other nurse had already looked into that and that this was the smallest they had — and that while it was a little big and slipped position occasionally, he had been wearing it for five days with mostly no problems. She didn’t even listen to me and just kept saying she was going to ask the respiratory therapist if he had a smaller one, but that he was at a delivery now and he’d look at it later. I told her I was concerned because if E stopped breathing and the machine went into backup mode (it will breathe for him if he goes 4 seconds without breathing), it wouldn’t do him a lot of good if it weren’t in his nose. She said if he stopped breathing they would “just bag him.” I was shocked and told her it wasn’t necessary to jump to extreme resuscitation measures if she would just fix the cannula so it was angled properly into his nose. She tried to say it wasn’t a big deal and that the alarm would sound at all the nurses’ stations so someone would get to him. I felt like I was talking to a brick wall. Just fix the cannula – we’ve had this for five days and it’s been working fine. It just needs to be adjusted. By this point I was starting to cry out of frustration (and fear) and she made absolutely no gesture to try to comfort me or anything. I get that this is her job, and maybe she’s a bit jaded, but this is my baby and she should treat parents with the compassion someone going through a traumatic experience deserves. Finally the respiratory therapist arrived and it took him less than five minutes to fix the cannula and Emmett seems to be resting comfortably now.
I have no idea why this turned into such a big deal, but I’m tempted to talk to the charge nurse tomorrow and request that she not be our nurse again. I’m not even sure if I can do that, or if it would cause more drama than it’s worth. I have been VERY happy with most of the staff here, but there are definitely some nurses I like better than others. This is the first time I’ve outright disliked a nurse here, though. It’s a helpless feeling to know we’re here for the next 3 months and our child’s life is in their hands. It’s not like we can just pack up and take our business elsewhere.
Oh, and she kept calling Emmett a “she.” Not a huge deal, but on top of everything else, it just feels like she doesn’t care.
It’s almost 1 a.m. and I am going to attempt to get some sleep. I have a feeling I won’t get much tonight though.
It’s 10 p.m. and I’m settling into my evening routine of pumping one last time before bed and recapping the day. I don’t know whether I’ll keep doing daily updates — I’m kind of hoping things get more boring at some point, but for now there are still a fair number of changes each day so here I am.
I spent the night in the NICU last night, after tucking T into bed. Overall, we had a good night. The lactation consultant said I was doing so well with my milk production that I could drop to every four hours at night as long as I was still pumping every two hours during the day. Sleep is good! I did wake up once to Emmett crying, but he is so quiet I can barely hear him and I have no idea how long he had been crying. This isn’t something the nurses monitor unless it sets off his alarms, or he’s loud enough someone hears him from the hall. But since I barely heard him from six feet away, it really made me glad D and I have been making sure one of us is here at night. By the time I woke up and got to E he had worked himself into such a frenzy that he temporarily stopped breathing and his heart rate dipped, setting off all the monitors. He recovered, but those episodes are always a little unnerving. The rest of the night was fine, though, and I think we both slept pretty soundly.
After yesterday’s PICC line removal, the doctor attempted to place a new line today, but couldn’t get it in and so we had to go back to IVs. It was disappointing, but he felt the IV was doing a sufficient job for now, and didn’t think it was urgent enough to force the PICC. He said if they got really desperate they could go in through his groin, but that that would be a little more invasive and not as comfortable for him. To make up for the lack of fluids we would send through the PICC (the IVs don’t handle quite the volume), they decided to increase his breastmilk feedings from 1 ML to 3ML (still every three hours), one day ahead of schedule. He has handled the increased feedings like a champ and was moving everything through his stomach fine, but it still wasn’t coming out the other end. So they gave him a suppository this morning, and another this afternoon after no progress, and he finally had a good poop around 8 p.m. I’m told sometimes their immature little systems just need a bit of a nudge. We’re hopeful things move as they should from here on out.
The great news is that he’s finally starting to gain weight, after pretty steadily losing over the last week. Even after that big poop, he is up 10 grams, so we’re hoping the increased feeds will help him continue to grow and that we’re on the upswing now (even for term babies, it’s normal to lose weight after birth).
His bilirubin levels were a little high again so he went back under the lights this afternoon. They’ll test again in the morning to see if he can come off them.
I got to hold him again tonight, but this time only for about an hour, since he needs to spend as much time as possible under the bili lights. It was still wonderful, but I’m hoping to get a longer hold tomorrow.
Some volunteers from a NICU parents support group stopped by tonight, so that was nice to talk to someone who could relate. The group is run by moms whose children are NICU alumni and they visit every Tuesday. I think this group will probably be an important resource for me. Almost a week later, the shock of what happened is just now starting to wear off, and I think I’m coming to grips with just how long and difficult of a road we have ahead of us. In a quiet moment by myself this afternoon, I suddenly found myself crying out of nowhere. I’m sure the postpartum hormones don’t help, but I’m also feeling a lot of guilt. Guilt for even mentioning in my last pregnancy update post that I was “over pregnancy” and “ready to meet my baby.” (I swear, I didn’t mean RIGHT NOW!) Guilt for not going into L&D a couple days earlier when I first thought something might be off. Guilt for being so reproductively defective. Obviously that last one has nothing to do with anything I actively did or didn’t do, but why does it seem like some people just have so many more challenges than others when it comes to having babies? My OB doesn’t think this is related to our losses in any way, but no one seems to have any theories on why this happened, either. I’m certainly glad we don’t want any more children after this. Because if the miscarriages hadn’t scared me away from getting pregnant again, this sure as hell did.
Anyway, sorry to go down a dark road. Emmett really is doing about as well as he possibly could right now. I just know I will have some stuff to work through for quite a while. D and I both probably will. But tomorrow E is one week old! He took a pacifier today (who knew they made pacifiers that tiny?) and the nurses all marveled about how good his sucking was, which will hopefully help him out when it comes time to breastfeed eventually. He was also quite alert several times today, which was really great to see. In just one week, he has changed so much and I’m looking forward to his continued progress.
Today I got to hold E for the first time. And T met his baby brother for the first time. My heart is so full.
The day started off a bit frustrating. D had spent the night at the hospital last night and this was the first morning since E was born that I had to get T ready for school on my own. As I mentioned in my birth story, getting him ready can sometimes be a challenge. And with trying to find time to pump this morning on top of everything, I was running late. And then T threw a tantrum and wouldn’t get dressed. And then I left his backpack at home and didn’t realize it until I was pulling up to his school. When I finally walked into the NICU and saw D, I burst into tears. I think it’s safe to say I’m feeling a little overwhelmed.
Thankfully, the day quickly got better when we got the news that they would be removing E’s umbilical catheter today, which means we would finally get to hold him! They did that around 11, and then my parents came to visit and we had lunch together in the cafeteria. By 2 p.m. we were ready to do our first “kangaroo care.” It took two nurses to carefully remove Emmett from his isolette and transfer all his wires, but when they finally placed him on me, it was one of the greatest moments of my life. I ugly cried for a good 15 minutes, all the while trying to hold back heaving sobs so I wouldn’t disturb him. It’s amazing how something as simple as holding your baby gets taken for granted unless you’ve ever given birth and not been able to do so for five days. After a while I was able to calm down and just focus on Emmett. He was very content – I’ve never seen his breathing or his heart rate so regular, and his oxygen saturation levels went up so high they were able to turn his machine down to 21 percent – which is what you and I breathe. Emmett slept peacefully on my chest for almost two whole hours, occasionally waking and craning his head up to stare at me. And I was able to close my eyes and drift off to sleep as well. It was pure heaven. I would have stayed longer, but I had to pee! They have no problem letting us hold him as long as we want, but only want to get him in and out of the isolette once a day since it’s such a big ordeal. Note to self: drink less water tomorrow before doing this again. I’ve been trying to hard to stay hydrated for milk production and it backfired on me today!
Around 5 p.m., D went to go pick up T from daycare and brought him back here to meet his baby brother for the first time. This morning I had tried to explain to him that baby was no longer in mommy’s belly, but because he came so early he had to stay in the hospital for a while so the doctors could help him get bigger and stronger. He seemed to accept this explanation, and thankfully he has no idea babies come into this world any other way. But we felt it was probably best for him to get to see Emmett in order to really understand. He was amazing. We had told him he needed to be quiet, so he kept whispering “Hi Baby Emmett.” D held him up so he could see into the isolette, and every time we would set him down he would ask to be picked up again so he could see. When I got home later, all he could talk about was Baby Emmett. I think it’s safe to say he’s infatuated. As long as E stays healthy and T doesn’t pick up anything from school, we’ll probably plan to have him visit frequently. I think it will be good for him to see him growing and getting stronger.
Unfortunately, while D was picking T up, the alarm on E’s PICC line kept sounding. And when the nurse went to flush the line, she couldn’t. She said it was most likely a kink or a clot in the line – either way we’d have to remove it, put the IV In his hand back in, and redo the PICC tomorrow. So T’s visit was cut short since they had to remove the line right away. D took him home and I stayed behind to make sure everything went smoothly. It was pretty hard to watch them have to stick him in his hand, and then remove the PICC. Honestly, the worst part was ripping off the tape that was holding the line in place. He cried quite a bit and his levels were bouncing all over the place, after being so calm and steady most of the day.
Once he was finally calm, I went home so I could put T to bed, and then turned around and came right back here. I’ll be staying here tonight. D is actually going back to work tomorrow so he won’t be here much of the day, though he may stop by for lunch. I think his plan going forward is to go into the office a couple days a week, but try to work from here the rest of the time. I’m still figuring out what to do with work, but will likely take a little more time off and then either go back, or work remotely until we’re able to take E home, and then take the rest of my leave. I definitely don’t want to use up all my time off while we’re stuck in the hospital. So much of this is far from ideal, but we’re figuring things out as we go.
We had another great day today. Most of it was blissfully boring. One exciting milestone we reached, though, is that we finally got to start feeding. So far it’s just one ML of pumped milk through a feeding tube, every three hours. As long as his system tolerates it, we’ll gradually start increasing the amount. We can also take a small dropper and give him a few drops on his tongue or lips to give him a taste. He loved that. He became very alert and lapped it right up.
D spent the night and the first part of the day with him, while I stayed with T, and then we switched places at noon and D took T for a hike after his nap. I missed his first feeding and by the time I got there for his second feeding, I could already see a remarkable difference in his appearance. He just looked so much healthier and vibrant. The real test will be whether his digestive system tolerates it, and while we have yet to see the first diaper to officially evaluate its success, the doctors could tell it had at least moved beyond his stomach, so that’s a great sign that his system is working as it should.
They aren’t making any changes or adjustments in the near future, aside from possibly lowering his oxygen concentration since he is getting better at breathing on his own. Unless anything changes (which we’ve been warned, can and does happen a lot), we are sort of in maintenance mode right now so he can continue to grow and gain strength. He will have a head ultrasound on the 25th to look for brain bleeds (standard protocol for preemies) and his eyes and ears will be checked at some point – usually around 32ish weeks.
I’m spending the night at home again tonight, while D stays in the NICU. I’ll take T to school in the morning and then D and I will both hang out at the hospital for the day tomorrow. I’m hoping we can find a good routine so we can minimize any disturbances to T’s world.
Today was a good day. I’m trying to toe the line between optimism and realism, but today was a really good day. We had a good night last night too. E was a little fussy through the night (and that tiny cry is just so sweet), but fussy isn’t terrible. He’s certainly a fighter. The biggest issue with being fussy is that we don’t want him burning more calories than necessary since he isn’t gaining weight yet. But he calms quickly when you place your hands on him and it’s nice to be able to comfort him.
I actually slept really hard last night, even though I woke up to the normal NICU noise and E still had the bili lights on him so our room was pretty bright. I also had to wake up to pump every three hours, so even though I didn’t get uninterrupted sleep, I could tell I slept really hard when I was sleeping. I really needed that.
Speaking of pumping, it’s going really well. I got 15 ML first thing this morning and it keeps increasing with each session. My latest pump was 30 ML. It’s also starting to transition from colostrum to milk, so all systems seem to be a go. Even under ideal circumstances, breastfeeding is hard in the beginning – your body takes a while to adjust to the sensation and it can be downright painful at first. But at least when you’re nursing and you’ve got that sweet baby on you, your body releases endorphins. With pumping, you don’t get endorphins; just suction. I always hated pumping with T but did it out of necessity. It’s been really hard pumping around the clock, especially knowing I won’t be able to actually nurse him for a long time, and that even once we can, preemies often have a hard time with it. It’s daunting to think that breastfeeding may not work out and we could end up exclusively pumping. But I’ll do what I need to do to get him the nutrition to help him grow.
Unfortunately, we didn’t get to start feeding today like we had hoped, because his metabolic acid levels are still a little high. I mentioned yesterday that his levels looked good last night, but it turns out I misunderstood — they were looking much better, but they’ve kind of plateaued since. They aren’t super high, but high enough that they aren’t ready to introduce anything to his digestive system. It’s a bit of a catch 22 – breastmilk will help him grow and get stronger, but his stomach and intestines may not be strong enough to handle it yet, so we have to make sure all conditions are just right before we attempt. Meanwhile, they’re adjusting the composition of his IV in hopes that helps his metabolic acid levels and sets him up for feeding success.
His white blood count is also a little high. Initially they were supposed to stop antibiotics yesterday but with the metabolic acid levels looking higher yesterday the doctor gave him another dose so that’s a good thing we did. That said, too high is better than too low, so they aren’t super worried just yet.
I just realized I started this post saying he had a really good day and then listed a bunch of problems. But truly, these issues we’re currently dealing with are pretty minor, at least so far. Our focus right now is really just fine-tuning. With the exception of one scary apnea issue mid-morning (scary for me – he stopped breathing for a little longer than I was comfortable with, but the nurse wasn’t concerned), his breathing has gone really well today, and they were able to turn down his oxygen some. He was also able to come off the bili lights (though they warned us in about 50% of the cases he’ll need them again at some point). But he just seemed more comfortable today overall. He slept a lot, but had periods of awake where he would look at me and grab my finger with his tiny hands, and he had a few minor fussy episodes. He just seemed a lot more like a typical baby today, which was awesome. They’ll check his levels again around 4 a.m. and then we’ll discuss our game plan for the day.
As for me, I had a pretty good day too. The pumping progress certainly lifted my spirits and I think having a better night’s sleep also helped. I also stepped away from the NICU for a few hours today to take T to swimming lessons, which was probably healthy. D took him to a birthday party this afternoon and I went back to the hospital, and a friend stopped by to bring me some snacks and some other friends dropped off some cute home decor items to make our room feel more homey. I’m actually home now (D is at the hospital), and I got to put T to bed tonight. That was really nice to snuggle him and read him stories and feel just a little bit normal again. And even though I’ll have to set my alarm to wake and pump tonight, I’m hoping I sleep better in my own bed than I have been on the hospital couch in his room.
Emmett is two days old now – about 55 hours to be exact. So much has happened in just one day, and I think the gravity of what we have ahead of us is starting to sink in. How can we do this for three months? It feels impossible. But I guess we have to. The alternative is even more difficult to fathom and I refuse to even type it. The good news is, Emmett continues to impress the NICU team, though we certainly got our first taste of the “two steps forward, one step back” pattern we were warned about today.
The biggest milestone today: they removed his breathing tube! That’s a huge step in his journey toward breathing on his own. The problem was, he still needed some assistance, and the team determined a CPAP (like what adults with sleep apnea use) was the way to go — and Emmett HATED it. It was too much air pressure for him, so every time he would get a puff of air from the CPAP through his nose, he would open his mouth in reflex and chuff out some of that precious oxygen. This caused the oxygen sensors to go berserk every couple minutes and made it sound like he was crashing. Even though the nurse and RT assured me he was fine – that he just needed to get used to it and that the alarms were just overly sensitive, the sound of all those alarms was just so unnerving, and in my sleep deprived state (3 hours last night and 4 the night before), it was simply too much for me to handle. Emmett was flailing around in protest, alarms were going off left and right, and I broke down sobbing. This went on for a couple hours. They even put a chin strap on him to keep him from letting all the air out his mouth, but then his face just looked smooshed and he was still fighting the machine. Finally, the team determined he was expending too much energy fighting and tried a nasal cannula instead of the CPAP. It was like an instant calm came over the room and things have been better ever since. I swear, I’m going to be hearing that damn alarm in my nightmares. D joked that E will probably need it to fall asleep once we take him home.
One thing I should mention, that was pretty amazing, was in between pulling the tube and putting on the CPAP, I got to see his full face again for the first time since birth. It was only a split second, but I snapped a quick photo.
Another benefit of not having the breathing tube is that he can actually cry now! As of right now it sounds more like a kitten mewing than a baby crying, but to me it’s the most beautiful sound in the world. I hope six months from now when he’s hollering and screaming all night, that I remember and appreciate how truly beautiful that cry really is, and how far we’ve come.
His bilirubin was looking a little low today, so after bragging yesterday that he hadn’t needed phototherapy yet, he started on it today, and will be on it through the night. They’ll draw his levels again in the morning. Thankfully, he doesn’t seem to mind it, though our whole room is glowing blue.
Around 1 p.m. the nurse wanted to insert a PICC line for nutrition and antibiotics. It’s a bit of a complex procedure so they require parents to step out of the room. D and I used the opportunity to take a walk and get some fresh air. We went down to an outside courtyard and sat in the sun, and I called my parents and gave them an update. The nurse called me on my cell when they were done and we went back to the room and found a calm and sleeping Emmett. Everything had gone perfectly with the PICC.
Around 5 p.m., the doctor stopped by to tell us she was concerned with how high his metabolic acid levels were. She said it could be something as simple as dehydration (he has been peeing a ton), or it could be an infection. She wanted to give him fluids and another dose of antibiotic (he’s been on antibiotics since birth due to the amniotic rupture), and then check his levels again at 8 p.m. If they didn’t drop, she wasn’t sure what could be causing it and mysteries are no good. D and I were a little troubled, but took a break to go home to the dogs, ate some dinner, cleaned up the house a bit and then met the doctor back in E’s room at 8. Thankfully, his metabolic acid levels are now fine. What a relief.
Another highlight of my day? I officially have working boobs. I may have shed tears of joy over pumping a whole 1.5 ML of colostrum this morning. It’s not much, but it was enough to get into a syringe and we can start feeding tomorrow (he’s been on just IV fluids so far, and the doctor wanted to figure out what was happening with his metabolic acid levels before we attempted feeding). I’ve been pumping every 2-3 hours around the clock since he was born and was beginning to get pretty frustrated with my lack of anything to show for it. But since this morning’s pump, I’ve been gradually increasing my production and am now up to 8 ML. The nurse says we’re already way ahead of what he needs, so I guess I’ll just get started on that stash! Since we’ll be pumping for quite a while before I can actually nurse him, it’ll be nice to have a good stash built up so I don’t have to worry about running out. Speaking of nursing — the nurse and I both noticed he has a tongue tie, which could interfere with nursing. They said it would be no problem to clip it once we get a little closer to that milestone. No use in putting him though more than necessary right now.
D went home to sleep shortly after talking to the doctor this evening, and I’m spending another night in the NICU. Tomorrow I’m going to take a little break and take T to swimming lessons, and D will come stay in the NICU. Then around naptime we’ll trade off and I’ll head back here and he’ll take T to a party. I’ll probably go home to sleep tomorrow night since we’ll have T with us again. Balancing our home life and our NICU life is going to be a bit tricky. We still haven’t decided when or how to tell T about baby brother, but will probably wait until E is presentable enough that we can introduce them. Right now all the wires are pretty intimidating and he’s too fragile for us to even hold. I can’t wait for the day I can get a picture of Theo holding Emmett.
Really looking forward to seeing my big boy tomorrow. I’ve missed him so much.
Keeping up with the Hoffmans 