NICU – Page 10 – Keeping up with the Hoffmans

NICU day 13

May 31, 2016August 6, 2018 Keeping up with the Hoffmans

Emmett had a pretty good day today. His O2 saturation levels are still all over the place, but that’s to be expected at this age. He had his physical therapy evaluation this morning and the PT recommended a special sleep positioner that feels kind of like extra moldable memory foam. Since they put that in his isolette, his O2 levels seem to be more stable and he was able to come down from 30% oxygen to 23% (the goal is to stay at 21%, which is room air). He does look pretty cozy on his new positioner, even on his right side, which seems to be his least favorite and usually requires the most oxygen support.

The doctor decided to increase his feedings by another 2 ML per feed since he’s handling his feeds so well and said our primary goal right now is gaining weight. He was up another 6 grams today, which isn’t a lot, but every little bit in the upward direction helps.

I was finally able to hand off everything at work today, which feels good to get off my plate. When I was pregnant with Theo, I had kept a running “hand-off” document for the last month of my pregnancy — something I could give to a coworker at a moment’s notice as an instruction manual for all my programs while I was gone. I had every intention of creating something just like that this time, but obviously didn’t expect to have a baby three months early! But I finally got that done today and did the official hand-over to my boss and another coworker, and it feels good to check that off so I can focus on E. Even though no one at work has been bugging me about anything, it bugged me knowing I had left so many things up in the air. I’m officially off work until June 29, at which point I’ll go back until E comes home (I may still work some of that time remotely so I can be at the hospital, depending on how things are progressing here), and then take the rest of my leave. We still need to figure out logistics, and it will be weird going back, knowing E is here, but with any luck things will continue to be fairly uneventful and E can just work on getting bigger and stronger.

I attended the NICU parents’ support group at the hospital for the first time this evening and I really think it did me a lot of good. Even though I feel like I’ve been handling things pretty well (and writing has truly been great therapy for me), I realized tonight that I’m dealing with a lot right now that I maybe wasn’t fully recognizing — some postpartum depression, guilt over what happened, a major case of the “what ifs,” stress around whether I’m pumping enough and guilt over how this may be affecting Theo. I used to give him his bath and tuck him into bed every night, and now I’m only doing that about half the time, since I’m spending half my nights in the NICU. I feel like I have so little time with Theo that I need to maximize the time I do have — but I’m tethered to a pump every hour and a half and am physically stuck. And then I feel the need to be with Emmett all the time too. I have anxiety when I leave the hospital, worried something bad will happen when I’m gone. It’s funny how just yesterday I talked about feeling good about the balance we’ve been able to strike — and while I do think we’ve struck as good of a balance as we possibly can from a time perspective, it still feels like it’s somehow not enough. I think the mental balance will probably take a while longer to reconcile.

Baby Emmett, NICU

NICU day 12

May 30, 2016August 6, 2018 Keeping up with the Hoffmans

I should be 28 weeks pregnant today. Mondays were the day I got to jump to the next week. It’s surreal to be staring at my baby through an isolette instead of staring at my growing belly (not to mention, my body is almost back to normal again, which is weird too). Never in my wildest dreams did I think we’d be here, and some days I still feel like I’m dreaming. I kind of alternate between just going through the motions in a daze and feeling completely overwhelmed with reality. But at least for now I feel like we’re settling into a pretty good routine, and balancing home life and NICU life – something I was told was one of the hardest parts – hasn’t been as hard as I’d imagined. Part of that might be my tendency to time manage better with a really full plate. But I think a huge part of that is having an equal partner in D, and having a child at home who forces us to maintain some sense of normalcy. And even though D went back to work, his work is very flexible and he’s able to do a lot of it from the hospital. We manage to have dinner together most nights, and lunch together pretty frequently as well. It’s not an ideal situation by any means, and some things like sleep, housework and the dogs have definitely taken a back seat. But overall I’d say the balancing part isn’t as bad as it could be.

I didn’t get a lot of sleep last night. E’s alarms kept sounding – he had several desats, even though his oxygen was turned up to 28%. He also had a few bradys, which are always a little unnerving. The good news is, his bili levels were low again (1.5) so he got to come off the lights. It’s normal for them to come on and off several times – and even term babies sometimes deal with this – but I’ll be happy when the lights are gone for good. He’s eating like a champ and we’re up to 16 ML every three hours, which is considered a full feed for this age. From here on out it’s just fine-tuning as far as feedings go, depending on his weight and other needs. The doctor mentioned starting him on vitamin D ~~(and something else I’m blanking on right now)~~ and iron. But those will just go in through his feeding tube. Typically preemies get to start bottle or breast feeding around 34 weeks — 33 at the earliest (they have a hard time coordinating sucking, swallowing and breathing before then). But in the meantime, we’re told the pacifier can help develop his sucking, and when we’re doing skin-to-skin I can sort of follow his lead and if he makes his way toward the breast (some babies will do this instinctively – pretty amazing), to let him. As of now he’s still pretty tiny and immobile when we’re doing kangaroo care, so I don’t see that happening any time soon. But that’s encouraging to look forward to.

Speaking of kangaroo care, today’s was kind of a bust, which was really disheartening. He just couldn’t keep his oxygen levels up, even though his oxygen is usually higher when he’s on me. He just seemed kind of stressed out and not breathing well, so the nurse ended up putting him back in his isolette after only about 15 minutes. Incidentally, right afterward she suctioned a large booger out of his nose and then he started breathing a little easier. She said we could try kangaroo care again later, but I had to leave shortly afterward to get home and take T to a birthday party.

D spent the afternoon at the hospital and will stay the night tonight. He said E had a really good rest of the day with no alarms or anything. Maybe it really was just a booger. Amazing how something seemingly insignificant can cause such problems for a preemie. At one point this evening the nurse redid his cannula and D was able to snap a rare photo with E’s face more visible while it was briefly off. He really is growing and changing fast, and I think he looks a bit like Theo! His weight was up to 921 grams today, or just over two pounds. Keep growing, little Emmett!

Baby Emmett, NICU

NICU day 11

May 29, 2016August 6, 2018 Keeping up with the Hoffmans

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.

Baby Emmett, NICU

NICU day 10

May 28, 2016August 6, 2018 Keeping up with the Hoffmans

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…

Kangaroo selfie. (Pretty sure this ordeal has aged me about 10 years.) — Kangaroo selfie.

Baby Emmett, breastfeeding, NICU

NICU day 9

May 27, 2016August 6, 2018 Keeping up with the Hoffmans

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.

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! :) — 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! 🙂

Baby Emmett, NICU

NICU day 8

May 26, 2016August 6, 2018 Keeping up with the Hoffmans

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.

Baby Emmett, NICU

NICU day 7

May 26, 2016August 6, 2018 Keeping up with the Hoffmans

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.

Baby Emmett, NICU

NICU day 6

May 24, 2016August 6, 2018 Keeping up with the Hoffmans

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.

Baby Emmett, NICU

NICU day 5

May 23, 2016August 6, 2018 Keeping up with the Hoffmans

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.

Baby Emmett, NICU

NICU day 4

May 22, 2016August 6, 2018 Keeping up with the Hoffmans

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.

Hiking with daddy. — Hiking Wallace Falls with daddy.