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.
Emmett is now about 34 hours old and we are learning all there is to know about milestones, life in the NICU and a bunch of other stuff I never thought I’d need to know. I’m going to do my best to keep this blog updated with Emmett’s progress and things we’re learning, even if some of the details may be a bit fuzzy to me. As you can imagine, my head is currently spinning.
Honeymoons and two-steps:
When we arrived yesterday, the doctors and NICU staff warned us right off the bat that the first 24 hours in the NICU tend to be the honeymoon period, and that going forward, it’s common for things to take a “two steps forward, one step back” pattern, even in the best of cases. So we’re learning to strike a balance between positive thinking and realism. That said, everyone has been marveling at how well Emmett has been doing so far!
Goals and milestones:
Long-term (i.e., in order to spring him from this joint), our big milestones we have to hit are: breathing on his own, regulating his temperature on his own, sleeping in a crib and not an incubator (I think this is related mostly to temperature regulation) and all feedings via mouth (breast or bottle, as opposed to IV or tube). There are many, many smaller milestones and sub-milestones, but those are the biggies.
Progress report:
I’m happy to report, E is already making great progress on the breathing front. When he was born, they had to immediately intubate him and hook him up to a respirator that breathes for him. According to the doctors, babies this premature get easily tired and basically forget to breathe. So he has to learn to do it on his own. Earlier today they were able to stop the continuous forced breathing and instead set him up so if he didn’t take a breath every two seconds, the machine would kick on for him and help him. Later this afternoon, they increased that interval to four seconds. They’re basically testing his ability to do it himself by offering less and less help (but always having safeguards in case he doesn’t take a breath on his own). He’s been doing great, and if he continues to do well throughout the night, they will actually remove the breathing tube tomorrow morning (which will allow us to see more of his beautiful face and actually hear him cry!), and put him on a CPAP or a forced-air cannula. These will still offer some assistance and not let him go without oxygen if he were to forget to breathe, but they both allow for a little more independence. They’ve cautioned us that if he doesn’t do as well on that as they’d hoped, there’s always a chance we could have to go back to the breathing tube (again – two steps forward, one step back), but at this point they’re feeling optimistic he can do it.
There’s also a chance tomorrow that they may be able to remove the catheters that are inserted in his belly button that are measuring his blood oxygen level (I think? My head is swimming) sugars and blood gases (just confirmed), and if that happens, we may even get to hold him and do skin-to-skin for the first time. We can hold him with most of his tubes and wires still hooked up, but the belly button ones are particularly fragile, so those have to come out first.
I’m happy to report his bilirubin levels have been pretty good and he isn’t showing signs of jaundice. So no phototherapy needed yet, but that doesn’t mean he won’t need it at some point. It’s still early.
Random learnings:
It’s past midnight now and after just four hours of sleep last night, I think the adrenaline may finally be surrendering to the fatigue, so I’m going to wrap this post with a random brain dump of just a few of the many things we’ve learned about life in the NICU. It’s a whole ‘nother world, for sure…
You will wash your hands raw. Enter a room? Leave a room? Eat? Touch your face or hair? You wash your hands before you do anything and everything. I got an amazing care package from some dear friends yesterday and they thought to include hand lotion. Smart.
It’s hard not to jump every time you hear an alarm. And there are a lot of alarms.
You do start to learn the difference between the really bad alarms (heart or breathing-related, etc.) and the more innocuous ones (for example, the IV station monitor alerts when a bag is half full, then 1/4 full, and then empty. We get it, IV.).
In addition to the alarms in your own room, the monitors in the hallway have alarms for all the patients for safety redundancy, and since doors are almost always open for easy staff access, it’s sometimes hard to tell whether the sound is coming from your room or the hallway. And then you feel relief, followed by guilt for feeling relieved, when you realize it’s not your baby’s alarm that’s sounding.
The NICU staff are truly amazing. I’m already in love with our doctors, nurses and respiratory therapists and we’ve only been here a day. I can already tell leaving them will be a bittersweet and emotional experience. I can only imagine the types of heartbreaking situations these folks deal with on a regular basis. On top of that, they patiently explain everything to parents like me who hover over their shoulder and ask them millions of questions while they’re trying to do their job.
Trying to get your milk to come in via pumping instead of nursing SUCKS. Especially when your boobs thought they had another 14 weeks before they had to perform.
There’s a lot of downtime. We have been told we can touch Emmett when he’s awake, but to let him sleep as much as possible. So for a lot of the day, we’re just sitting here. I’ve kept myself busy keeping friends and family updated, but even if I’m not interacting with E directly, it’s still comforting to just be here beside him. If (God forbid) something went wrong, I would want to be here, and I also want to be here to celebrate every milestone and achievement.
There’s a certain solidarity between NICU families. Whether it’s a weary smile from another parent in the hallway or an email or text from a friend who’s been there (or a friend of a friend, in some cases!), I’m finding a rapidly growing network of others who just get it. Some of the best “therapy” for me so far has been simply hearing success stories of children who got a rough start way too early but are thriving now. There’s actually a wall in the hallway here with photos of beautiful, smiling children of various ages. Under each one is a plaque that states their weight and gestational age at birth. It’s truly beautiful, and brings a smile to my face every time I walk by.
This is certainly not a post I ever thought I’d be writing at just 26 weeks 2 days.
I really should go to sleep right now. It’s been a long, emotional day. But I’m completely wired and I don’t really feel like leaving the NICU, so I thought I’d grab my laptop, sit by my baby, and try to make sense of the day’s events in one of the most therapeutic ways I know — writing. And, much like my birth story with Theo, I know is is probably way more information than most people would ever want to read, but recalling all the details helps me process.
The short version:
Emmett John Hoffman made a dramatic entrance into this world today at 2:20 p.m. At just 26 weeks 2 days gestation, he weighed in at 1 lb. 14 oz and is 13 inches in length. We have a long road ahead of us, as doctors estimate he’ll stay in the NICU until close to his original due date of August 22. But this guy is already a fighter. He came out crying and already peed on the nurses.
The novel:
For the last couple days, things have felt, shall we say — a little more damp than normal. A lot of this I just chalked up to one of the less glamorous things about pregnancy that no one talks about. I remember The Grossness with my pregnancy with T, but I couldn’t quite shake the concern that it seemed to come on fairly suddenly this time. By last night it had increased to the point where I was genuinely starting to worry. Still, I know I can be a bit of a hypochondriac, and the fact that we’ve had two losses certainly doesn’t help that. After googling whether you can check for amniotic fluid at home, I hopped onto Amazon around midnight last night and one-day-Primed some Ph test strips. I figured $10 was a small price to pay to put my mind at ease. I’d test today and if anything looked questionable or I wasn’t reassured, I’d head to labor and delivery to get checked out. Just to be safe.
This morning I woke up around 5 a.m. to not only more of The Grossness, but it was tinged with blood and I was having mild contractions about 3-5 minutes apart. Even though I’ve been getting Braxton Hicks contractions for a few weeks now, I’d never had them this regularly. This was all making me feel really uneasy so I called the on-call OB. Without hesitation she told me, “Go to labor and delivery.” Unfortunately, D was out of town for work, so I had to get T off to daycare myself first. Getting him ready has been a bit of a struggle lately and timeliness has not been our strong suit. I may have bribed him with candy just to hurry and get in the damn car. Dropping him off was an incredibly emotional experience. This was possibly his last day as an only child but I had to rush him into his class while trying not to appear too worried (after all, there was a part of me still holding out hope it was nothing). I fought back tears as I kissed both cheeks, the top of his head and inhaled the smell of his hair. And then I practically ran out the door and sped to the hospital.
When I went to check into triage, I burst into tears and could hardly even tell them my name. I was alone and scared. D had no clue what was happening because he was on a plane and I couldn’t reach him. And I didn’t want to worry anyone else until I knew what was going on. They took me back and monitored my contractions and the baby’s heartrate for what felt like hours, and then finally the on-call OB checked me and determined I was 1 cm dilated. A tad concerning, but since I’d already had a baby, some dilation can actually be normal. She also took some swabs to send to the lab to see if there was amniotic fluid. She said it didn’t necessarily look like amniotic fluid to her, but that there was definitely more fluid than she was comfortable with. She said it actually looked more like what your cervix produces when you’re in labor (I had no idea this was a thing). Either way, not ideal, but no amniotic fluid was certainly the preferred outcome, so this sounded promising. If it were “just” preterm labor they said there was still a lot they could do for me. They would give me some magnesium to slow labor and could maybe even send me home tomorrow!
After the OB exam, I was sent to Maternal Fetal Medicine for an ultrasound to assess the baby’s size and viability. The MFM told me baby looked beautiful for a 26-weeker, but was very honest about what a rocky road we’d have ahead if we were to deliver now. Survival rate is about 90%, but beyond sheer survivability, we face potential heart, lung, eye and brain complications. He said the magnesium would help protect the brain and that they’d give me a steroid shot that would strengthen the lungs — just in case. The good news was that there was still a fair amount of fluid around the baby, so even if I were leaking amniotic fluid (we were still waiting on test results), it was likely a slow leak. And he said in rare cases, a pinhole leak could even repair itself. Either way, he didn’t think I was in immediate danger of “draining the pool,” so to speak, but if I were to completely rupture, I’d deliver within 48 hours.
About this time, we got the labwork back on the amniotic test. It was showing very small amounts of amniotic fluid. Not great news, but they were optimistic we could still keep this baby baking for longer with magnesium to slow contractions and antibiotics to stave off any infections threatened by the leak. I was able to catch D on a layover and update him on what was going on. While he was worried, everything I had been told sounded promising at that point. I told him not to worry – just get here when you can. I got officially admitted to the maternity ward for 24-hour observation.
Unfortunately, after a couple hours on the magnesium, contractions were getting progressively stronger, not weaker, even after they upped my dosage. And when I stood up to use the restroom, it was clear we were dealing with more than the slow leak we had suspected. When the doctor observed me writhing in pain and yelling through a contraction, she thought we should probably check my dilation. I’ll never forget the way her face fell and she said in a quiet voice. “You’re complete. We’re taking you to delivery.”
At that point I kind of traveled out of my body. I heard myself let out a scream that sounded like no sound I’d ever made before. Suddenly there were about 12 doctors and nurses in the room. We weren’t sure whether I’d need an emergency c-section, and they knew they needed the NICU team on standby, so they wheeled me down to the OR, even though the regular rooms are typically set up for delivery. I had about three contractions on the way and was yelling like they do in the movies (nothing like Theo’s calm but long birth!). I had completely lost control and I think it was part pain and part complete and utter fear. I had an overwhelming urge to push, but they kept telling me not to because the NICU team wasn’t ready yet. I knew the only way I could not push was to get an epidural. I asked if it was too late, and they all looked at each other like they didn’t know. They paged the anesthesiologist anyway and he met me in the OR. He agreed to the epidural. Unfortunately, he was working so quickly that he didn’t get me completely numb before putting the giant needle and tubing in my spine and digging around to get it into position. I think I yelled as loud as I had during contractions. To make matters worse, he messed up and had to start over. So I’m the lucky girl who got two epidurals today.
About this time, D burst into the OR in scrubs. I’ve never seen him look so scared in my life. He held my hand while I yelled through two more contractions, fighting the urge to push (why was the epidural not working yet?!) and then suddenly the NICU team was ready and it was go time. About 20 seconds and two pushes and he was out. It would have been one push but they actually made me slow down. He cried once he was out, which the doctors said was amazing for a 26-weeker. They held him up so I could see him and then they whisked him away to the NICU. He was bright pink, not blue – which the doctors also said was a good sign. His APGAR scores were 1, 4 and 8, which I’m told is also pretty amazing for a preemie this small. We later learned in the NICU they had to intubate him and then perform CPR to get his heartbeat back – not uncommon, but scary nonetheless.
While I was waiting for my placenta to deliver, I felt my lower half begin to tingle and go numb. Huh. Nice of the epidural to start working now. I delivered the placenta and got a quick exam, and then they rolled me back up to my room. It took forever before we were allowed to go see Emmett, partially because we had to wait for my epidural to wear off (again, so glad I got that ). He is hooked up to a lot of tubes and wires, which is a bit intimidating, but everyone assures us he looks great for such a tiny preemie. We aren’t allowed to hold him yet, but they said we might be able to as soon as tomorrow or Friday. In the meantime, we’re allowed to hold his hand or foot, or sort of cup his head and feet while he’s awake. When he’s sleeping, they’ve advised us to let him rest. Meanwhile, I’m pumping every 3 hours around the clock to give him what I can to help him grow. I’m not producing anything just yet, but the frequent pumping should tell my boobs to get with the program!
I will get discharged from the hospital tomorrow, but I think we’re just going to camp out in E’s room and not go home just yet. Grandparents are watching T for a couple days, and I think the NICU is going to become our second home/office for a while. The doctors have told us he’ll likely stay in the NICU until close to his actual due date in August. I don’t think I’ve grasped the magnitude of spending three months in the NICU at this point, and I have a feeling we aren’t getting off the emotional roller coaster any time soon. For now, I’m trying to look at the NICU as an extension of my pregnancy – only now they’re carrying the baby, not me. We hadn’t planned on meeting him until August anyway, so this is sort of a sneak peek, and we’ll get him in August as planned. We’ll see how long this optimism holds up, anyway!
). He is hooked up to a lot of tubes and wires, which is a bit intimidating, but everyone assures us he looks great for such a tiny preemie. We aren’t allowed to hold him yet, but they said we might be able to as soon as tomorrow or Friday. In the meantime, we’re allowed to hold his hand or foot, or sort of cup his head and feet while he’s awake. When he’s sleeping, they’ve advised us to let him rest. Meanwhile, I’m pumping every 3 hours around the clock to give him what I can to help him grow. I’m not producing anything just yet, but the frequent pumping should tell my boobs to get with the program!
Keeping up with the Hoffmans 