NICU day 58

I had the below post all written out last night, and then things took a turn for the dramatic. It was by far the worst night I’ve had with him yet. The reflux has been getting worse and worse, and he’s had so much suctioning to remove everything that keeps accumulating in his nose, that he’s now developed some irritation in his nose from all the suctioning. His nasal passages got so swollen last night that he could not breathe out of them at all. Babies are obligate nasal breathers, so it’s not like when an adult is stuffed up and just breathes out of their mouth instead. So he would turn purple holding his breath, then gasp and cry out (which thankfully would get some oxygen in him), but then he’d repeat all over again. I felt so helpless. All I could do was stand there holding him upright, sobbing, while listening to him gasp for air. This all went on until about 2 a.m., when the doctor gave him some steroid drops in his nose to calm the inflammation. That at least allowed him to get some air through, but he’s still really struggling to breathe and just sounds so miserable.

Anyway, here’s the rest of what I had originally written yesterday. I don’t have the energy to merge the two or rewrite anything.

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This morning Emmett’s team started him on Prevacid [edit: I had originally written Prilosec – oops, wrong med!] to help him with the reflux. It will take a few days to see whether it makes a difference. I’m really hoping it does, as it’s pretty miserable seeing him so miserable. This evening his nurse mentioned we would take him off of it if it didn’t seem to be making a difference, “because of the potential side effects.” When I asked her what the side effects were, she kind of stumbled and admitted she didn’t, know and then said I could just google it. Um. Not impressed with this nurse so far. What medical professional tells you to google? Of course google came up with all kinds of awful stuff. I’ve been so good about not consulting Dr. Google when it comes to Emmett, which is very unlike me, so I’m kind of annoyed she sent me in that direction. A few minutes later the nurse came back and said she talked to the doctor and he said the side effects are so rare that they aren’t even worth mentioning unless something seems off with him or he stops growing. Reflux is really common in preemies — and even in term babies — and the treatment with antacids is pretty common.

Speaking of growth, he had a wimpy 2 gram gain tonight, but they’re actually happy with a modest gain, as he’s been a little puffy the last couple days and they think he may be retaining water. He’s had several days of large gains, which would corroborate the edema. The nurse earlier today was even talking about starting him on a diuretic to flush him out. I need to talk to the doctor more about this, as the nurses have been fairly vague and I hope it’s not indicative of something potentially more serious.

Theo came to visit his little brother this evening. I had gone into the office today and after work I got him from daycare and we swung by the hospital for a few minutes. He hadn’t seen him since he got out of the isolette and immediately asked where the top of his bed was. He was happy to see that baby Emmett was bigger, and when I picked him up and crouched down low to the ground so T could get a better look, unprompted, he kissed the top of E’s head. I wish I had gotten a photo, but my arms were full of baby. It was a very sweet moment.

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NICU day 56

Today had its ups and downs. After yesterday’s conversation with E’s team, I was excited to get to the hospital today and try breastfeeding. When I mentioned it to the nurse this morning, though (a new nurse we’d never had before), she said, “we usually don’t try that with babies who have breathing problems.” I instantly felt disappointed — and a bit defensive. First of all, he’s on 1 liter of oxygen and we were told we could try nursing once he got down to 2. Second of all, he has chronic lung disease, so by her standards we’d never breastfeed. Third, despite the CLD, he’s been doing pretty well lately (and the doctor said he’d hesitate to even label him CLD at this point since he responded so well to the steroids) so her “breathing problems” comment rubbed me the wrong way. Thankfully I was able to talk to the lactation consultant, who was still on board with trying today, and the doctor was in agreement this was the right time too. So the nurse finally agreed.

The nursing went pretty well. He would latch and then fall off, latch and fall off, and then went to sleep after about 20 minutes of this. So I don’t think he really got much and they didn’t bother weighing him before and after to check, but the LC said it was a great effort for his first time, considering how little he still is. Our plan is to do this once a day until he starts to get the hang of it, and then we’ll kick off the official 72 hour breastfeed. Meanwhile, he’s still getting full meals via feeding tube.

Unfortunately, his reflux seems to be bothering him quite a bit today. He was desatting a ton and he just sounds so uncomfortable when he breathes. This evening at one point he even sneezed and milk shot out his nose. It had been over an hour since his last feed so it was all his previous meal that was backed up all the way into his nose. It’s frustrating listening to him snort and grunt and not be able to help him.

This evening I went to barre for the first time since before I gave birth. It was good to be back, but I definitely felt like I hadn’t been there in two months! I am definitely going to be sore tomorrow, but it feels good to work out again. I’m back to my pre-pregnancy weight, but I just feel squishy. I need to build up some muscle tone again. I grabbed a quick beer with my friend after class and then headed back to the hospital for the night. I have a feeling we’re in for a long night with all the snorting and desat alarms.

Weight was up 78 grams tonight, bringing him to 4 lbs 13.5 oz.

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NICU day 30

It’s been kind of a hectic evening in the NICU. Emmett is fine, but there was a delivery that required almost all hands on deck around 10 p.m. (I’m sure that was me a month ago!), and it’s been chaos and hustling and loud beeps and alarms ever since. I had to close my door because I don’t really want to know what’s going on, in case it’s not good. Feeling really thankful for private rooms right now. My heart goes out to those parents because I know just how scared they must be.

A byproduct of this dramatic delivery is that Emmett’s nurse got called away and we got temporarily stuck with the roving nurse that just fills in on people’s breaks. She didn’t position him very well for his feeding (and didn’t even realize his feeding tube was wrapped around his neck until I pointed it out), and then shortly after she left, Emmett started spitting up while on his back and went into a pretty big desat. No one even came to check on him until I had to go flag down another nurse. No clue where the roving nurse was. E seems to be comfortable now, but I’m spent. People keep telling us to get away and take some time for ourselves, but then stuff like this happens and I wonder how long he would have been spitting up and desatting before someone came to help him? I know this is a very good hospital and I’m sure the NICU staff know what they’re doing, but there’s just no substitute for having a parent in the room with him.

Other than an eventful evening, today was actually pretty good overall. Emmett had his feeding tube moved from this mouth to his nose again, which just looks so much more comfortable, lets us see more of his face, and allows him to get his hands to his mouth like normal babies. I think we may have a thumb sucker! He put on another 30 grams last night, and 20 more tonight, so he’s now up to 2 lbs 13 oz. They’ve also increased his feeds to 25ML.

Despite the fact that he’s doing great on five liters of flow in his cannula, the doctor decided to give him another day to rest and grow before going to four. I ran into the doctor in the kitchenette this evening and he said all the respiratory therapists are basically begging him to let them lower the flow, though, because E is such a rock star and can handle it. He probably can handle it, but there’s really no rush. Even if we weaned all the way off respiratory support way ahead of schedule, it’s not like we’re going home next week. And we’re still 2-3 weeks away from E being developmentally ready to breastfeed, which would be the only other reason to push for less flow. I’m totally fine with this doctor’s more conservative approach.

It’s after midnight and I’m exhausted. Things are still fairly chaotic here but I’m going to attempt to get some sleep anyway.

Thumb sucker.

Thumb sucker.

NICU day 21

Emmett is three weeks old today. Also, I have a new niece, born today. It was bittersweet hearing the news my brother and sister-in-law were in labor. On the one hand, I’m excited to meet my niece, and having cousins who are exactly three weeks apart in age will be fun as they grow up. But it also dredged up a ton of repressed emotions and I had myself a good cry. I was hit with the realization that their baby was supposed to be two months older than ours. That I’m still supposed to be pregnant. And I’m mourning the loss of a normal birth experience; the anticipation, the excitement, the rush, the joy. For as painful, long and excruciating as my labor with Theo was, I’ve always said I would repeat that day every day for the rest of my life if I could. There is simply no feeling in this world like having a screaming baby handed to you that you just gave life to. If I could bottle up that high and sell it I’d be rich.

But we didn’t get that this time. And since we’re done having babies, we don’t get that ever again. I got cheated out of that experience. Instead of intense joy, I’ve never been more scared in my life. I was alone and unsure if D would make it in time. Unsure if my child was even going to live. And there’s still so much uncertainty. Even the best moments so far like getting to hold him for the first time and having Theo meet him are overshadowed by the fear that this story still might not have a happy ending.

I’m glad one of my favorite nurses was on today. She saw how upset I was and gave me a hug. She pointed out how well Emmett is doing, and she offered to connect me with another mom so I would have someone to talk to. I mentioned yesterday that the support group isn’t very well attended, and actually last night’s session ended up getting cancelled altogether. This experience is very isolating. So this afternoon I had a “mom date” with another one of the moms in the NICU. Unfortunately (for me — good for her!) she is getting discharged tomorrow, but we really hit it off and she gave me her phone number and told me to call or text her any time I needed to vent or ask questions. She’s been here for more than three months and has a heartbreaking and amazing story. I’m so happy she gets to go home tomorrow and only wish I had met her three weeks ago!

I attended daily rounds again this morning. While there wasn’t much new to report, I’ve let the nurses know that as long as one of us is here during rounds, we’d like to attend. For me, knowledge = some semblance of control in an otherwise uncontrollable situation. His iron is a little low (27) and if it gets below 25 they will treat with a hormone patch. He’s on iron supplements currently, though, and they are hoping that will do the trick. They’ll check again in a few days. I think my eyes must have still been a little bloodshot from crying when I attended rounds, because everyone was giving me major “hang in there” looks, and the doctor kept assuring me he’s doing well. I’m feeling a bit schizophrenic on the sympathy front. On the one hand, I can’t stand it when someone like Nurse Bitchy completely ignores my pain, but I also get really uncomfortable with all the pity. I’m not really sure what I want — besides the privilege of still being able to complain about swollen ankles and make jokes about how awful it is to be so huge in this heat. That would be nice.

The good news is, I got to hold Emmett for a full three hours today and he did amazing. It was just what I needed after an emotional day. There’s still so much uncertainty in our future, but I’m trying to focus on the little things that mean the most right now: a day with fewer events, 21% oxygen for most of the day, and a weight increase of 52 grams (he’s now 2 lbs 7 oz!).

Keep fighting, little man.

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NICU day 8

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.

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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.

NICU day 7

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.

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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.