Today was a pretty good day. Emmett went from 6 liters of pressure to 5 in his nasal cannula. He handled the transition pretty well. He had a few more episodes today, but the team said that was to be expected.
We’re also down to three hours between cares again instead of four. Three is the standard; they had only gone to four before because they were worried about his weight gain and wanted him to rest more. But even though he has been going up and down on his weight over the last few days, the overall trend is still upward, so they were comfortable going back to three. And that makes holding him between cares easier on me!
Emmett is now four weeks old. I sound like a broken record but time has really flown, yet it also feels like we’ve been here forever. If we’re going by due date as our planned release date, we’re about 1/3 of the way there, so that’s promising.
E is still doing fantastic in the breathing department. They decided to give him one more day at 6 liters on the high-flow and will step him down to 5 liters tomorrow. He is also still having very few events, compared to just a week ago. He had two self-recovered bradys today that I’m aware of, and one of them didn’t even include a desat (usually he desats right after a bradycardia event).
Unfortunately we did get the news today that his red blood count is very low, and since he’s already on the maximum dose of iron, they’re moving onto something a bit more aggressive: Epogen – an injectible protein that causes your body to generate more red blood cells. So if Emmett wins the Tour de France he won’t pass any blood doping tests. The hope is that the Epo will help him avoid a blood transfusion, which carries more risks. The main risk factor with Epogen is an increased risk of ROP (retinopathy of prematurity – a degenerative eye disease) – but that risk is usually higher in babies closer to 33-34 weeks, when the eye’s blood vessels are rapidly growing. Babies are also at much higher risk of ROP when they’ve been on high levels of oxygen for an extended period of time. Since he’s never spent much time on high levels and has been on room air for several days now, the doctor felt he was a prime, low-risk candidate for the Epo. They will administer it three times per week for two weeks and then recheck his levels. With any luck he’ll be off the Epo before he reaches that 33-34 week stage where his eyes are at a higher risk anyway.
Another small thing we dealt with today was some jumping blood sugar levels. First they were high, then they were low, and then they were normal. They are going to recheck in the morning, but didn’t have any idea why they might be doing that. They didn’t seem too concerned, but I get a little uneasy with the lack of explanation.
They didn’t weigh him last night until after midnight, so I didn’t include that in yesterday’s entry, but he went up a whole 70 grams! But then tonight he lost 30, which we kind of expected after such a huge jump yesterday. Still, he’s up to 2 lbs 11 oz — almost a pound above his birthweight! Keep growing! He will be one month old on Saturday and I would love nothing more than for him to hit the 3 lb mark. #squadgoals
We had another good day today. Emmett is still doing great on the high-flow cannula. With him doing so well, it would be reasonable to start the process of weaning the liters of pressure (he’s currently at six). But the doctor said he’d rather not push him right now and just let him be. If we were to start weaning him, there’s every chance he’d handle it well from a breathing perspective, but may have to work harder, which could slow his weight gain. They may wean him down to five liters as soon as tomorrow.
During his checkup this morning, the doctor could still hear his heart murmur, but that’s actually a good thing. While we have every hope the murmur will resolve itself eventually, if we were to suddenly not be able to hear it, that could actually indicate the hole is getting bigger. The doctor compared it to a garden hose — if you make the opening smaller by putting your thumb over it, it’s louder. If you remove your thumb, the opening is bigger, and the water flows more freely and quietly. So for now, being able to hear the murmur is an indication the hole is still small.
This morning, in a small step toward breast/bottle feeding, I was able to take some milk on a syringe and drop it into his mouth as he was sucking on a pacifier. The idea is to get him to make the association between sucking and eating — something he hasn’t had since he’s been tube fed thus far. He loved it.
This evening at home, I came to the disappointing realization that I’m going to have to deal with excess lipase in my milk again. I discovered this when I was nursing Theo. You can read more that here, but in a nutshell, something like 3% of women (I always end up on the wrong side of statistics), produce too much lipase in their breastmilk — an enzyme that breaks down fat. The result is that the milk takes on a sour and soapy taste very quickly. And while most women can store milk in the refrigerator for four days or freeze it for up to six months, lipase milk goes “bad” much faster than that (the rate of breakdown varies by woman). I use “bad” in quotations because it isn’t harmful; it just tastes bad.
I was told by the lactation nurse a couple weeks ago that just because I had too much lipase last time, doesn’t necessarily mean I’ll have it again. And since Emmett is being tube fed right now, it doesn’t matter what it tastes like. But… since I’ve managed to build up a pretty impressive stash, and we’re just a few weeks away from being able to breast/bottle feed, I decided to test some of my milk tonight to find out if it was affected. Unfortunately, it smelled like soap. Damn. The only way to slow the breakdown when storing it is to scald it (bring it to just below boiling) and then cool it quickly, before freezing. You know, because I didn’t have enough on my plate right now.
So, this evening, I scalded the milk I pumped today and separated all my previously frozen milk. Any of the already frozen stuff we can use while he’s still being tube fed, we will. But anything I freeze going forward will have to be scalded first. After E graduates to normal feedings, I’ll just have to donate any remaining frozen milk from before I started scalding. I was able to do this after I discovered my lipase issue with Theo. And while it was painful to not be able to use all I had pumped, I was happy to be able to give it to a good cause, and that felt better than throwing out all that liquid gold. Milk banks give donated milk to NICUs, and ironically, the same milk bank I had signed up with last time is the one our NICU uses. So if I had been unable to produce milk this time, I would have been able to feed E donated milk from the very same milk bank I had donated to. Karma, right?
Today was a good day. Emmett has reached 30 weeks gestational age (happy to be out of the 20s!) and put on another 30 grams, bringing him to 2 lbs 10 oz. Another huge milestone is that he graduated to the high-flow nasal cannula, so we said goodbye to the snorkel mask.
I’ll admit, as much as I missed seeing his face, I was very hesitant to get rid of the CPAP since he had been doing so well on it. We’ve had an amazing past few days with very few events, and I worried that this might take us back to the days of multiple desats and bradys. Happy to report that so far, things seem to be going just as well on the high-flow. I don’t think he’s desatted at all today and has only had one bradycardia, which was very brief and self-resolved.
In addition to changing up his breathing support, we’ve also increased his milk intake to 23 ML per feed, and have gradually reduced his feeding time from an hour to a half hour (still every three hours). They had previously stretched out his feedings to an hour since he kept desatting as his tummy filled, but since he hasn’t been doing that, they were able to get him back to 30-minute feeds, which is the standard.
In an effort to minimize any stimuli and allow him to conserve calories (and gain more weight), the nurses are now only doing his cares (diaper changes, repositioning, etc.) every four hours, instead of every three. Which means now if I want to hold him for the entire stretch in between cares I need to do it for four hours! I did it today, but by the end I was hungry, had to pee, and my boobs felt like they were going to burst with such a long stretch between pumping (and having a baby on my chest certainly didn’t help!). But dammit, I was determined to make it the full four hours. I was talking to another NICU mom the other day and she had also talked about “powering through” the long holds to give her baby maximum skin time with minimal disturbances. The sacrifices we make as moms, right?
Another uneventful day. In fact, this morning E’s doctor actually said to me that he was one of her easiest patients. I asked two different nurses, plus the doctor, whether they were concerned with his lack of weight gain over the last two days, and they all had the same answer for me: no, that it’s the trend we’re looking for, and that changing his breathing support could be to blame as he adjusts. After hearing it three times I think I’m finally satisfied. I’ve become a little obsessed with his weight. Thankfully he was up 20 grams tonight at his weigh-in. He’s now 1150 grams, or 2 lbs 8.57 oz.
I stayed at the hospital last night, and then came home late morning and spent most of my day at home, getting T’s big boy room cleared out and painted while T was enjoying some grandparent time. Home improvement projects have always been my zen so it was nice to get away from the hospital, put on some Pandora and focus on a project. D and I went to Costco around noon (hot date!) and then he headed back to the hospital. Because of the way schedules worked out today, he held Emmett instead of me. He had a great afternoon with no episodes.
During cares this evening, D was able to snap a quick photo of E without the CPAP on his face. I’m hoping we can graduate to the high-flow cannula in a few days. It’s hard to argue with how well he’s been doing on CPAP – I just miss his face! It changes so much every time I see him.
Emmett is a rock star. Another boring day today and he’s still doing fantastic on the CPAP. I held him for almost three hours and he was so content the entire time. He was sprawled out as if he didn’t have a care in the world. Unfortunately, his weight didn’t change at all today. Better than a loss, but not exactly what we were looking for. The nurse and doctor aren’t worried, though, and pretty much reinforced what I mentioned yesterday – that the upward trend over time is what matters and daily gains or losses don’t mean much because there’s a fair amount of fluctuation at this age. He’s also at a point developmentally where he’s doing a lot more on his own, and the fact that he’s been on 21% oxygen (room air) for about two days straight means he may be burning more calories by simply breathing.
D and I both took Theo to swimming lessons this morning, and it was nice to get out as a family (or as complete of a family as we can as long as E is in the hospital). I headed back to the hospital after lunch and my parents came for a brief visit before swinging by our house to pick up T for the remainder of the weekend. Tomorrow afternoon D is trading me at the hospital and I’m going to get as much of T’s big boy room completed as I can while he’s away at grandma and grandpa’s.
I have to say, today was pretty boring. Emmett is doing fantastic on the CPAP, even if it looks worse (I miss seeing his sweet face!). He’s been having very infrequent events, and I got to hold him for three hours today and he was perfect. Unfortunately, he lost 30 grams at tonight’s weigh-in, but D brought up a good point to me this evening that we probably shouldn’t put too much stock in daily gain and instead should be looking at trends over a week. A nurse had told me pretty much the same thing a week ago — she said they like to see a gain of around 30 grams per day, but that it’s really inconsistent — sometimes it’s more, sometimes it’s less and sometimes babies randomly lose for no apparent reason. If the past few days are any indication, I’d say that’s spot on.
I attended rounds again this morning and the doctor said she was happy with how he was doing on the CPAP and didn’t want to make any changes to his care for a while to let him relax and focus on growing. So it looks like we’re stuck with the snorkel for a while longer. She’d like to re-evaluate where we are once he hits 30 weeks, which is Monday, and possibly graduate him to the high flow cannula at that time if he’s still doing well. They will recheck his sodium levels on Sunday, as they were borderline low at last week’s check. As long as he’s continuing to grow (and today’s weight loss was just a fluke), she isn’t too worried about his sodium.
I’m home with T tonight. Tomorrow I’ll take him to swimming lessons, and then the grandparents are taking him for the rest of the weekend so we can work on putting together his big boy room, and start getting the nursery ready for E’s homecoming, even if it is a long way off still.
Today was pretty eventful. Normally, in the NICU world that would be a bad thing, but today it was mostly good.
This morning, we got the news that the doctor would like to take Emmett off the NIV NAVA machine. His team had been discussing this idea for a couple days now, and they decided today was the day. But instead of going to a high-flow cannula like they talked about, they decided to go to a CPAP. While both options prevent his lungs from collapsing with exhale by keeping them partially inflated at all times, with the CPAP you can actually control and measure the amount of pressure, so the doctor felt this was a good intermediate step on the way to a high-flow cannula. Unfortunately, that meant putting him back on the snorkel mask he had hated so much when he was two days old.
So far he seems to be tolerating it well, though the machine is noisy and his face is almost completely covered. It’s hard because even though we know it’s a step forward (the respiratory therapist called this “remarkable” for his gestational age), it feels like a step back, simply because it’s so much more obtrusive. With any luck, he’ll only spend a brief amount of time on the CPAP before graduating to high-flow cannula — which looks almost exactly like what he had before, but offers even more independence and less support. With both the CPAP and the high-flow cannula, there’s no backup mode if he stops breathing, which is a big, scary step. Now, if he has an apneic episode, the assumption is that he’ll recover on his own and start breathing again. If for some reason he doesn’t, then the nurses have to rush in and help him. And that’s terrifying. But the way the doctor described it, he needs to eventually do this on his own, and the only way to see if he can is to try. If he has too many apneic episodes and/or his oxygen saturation drops too often, there’s always the option to put him back on the NIV NAVA. Two steps forward, one step back, right?
I didn’t get to hold him today because he was pretty exhausted from the transition, so that was disappointing. But he’s only had a couple events since getting the CPAP and they were self-resolved, so we’re optimistic this was the right move to make at this time.
On the bright side, he got to spend a few minutes without anything on his face before he got the CPAP and I was able to get a video of him breathing completely on his own and looking around. The nurses always comment on how alert he is for a 29 weeker, and how big his eyes are. They always tell us how cute he is too. They probably say that to all the parents, but we think he is pretty cute — especially as he fills out more and starts looking more like a newborn. He gained another 60 grams today and is up to 2 lbs 9 oz now!
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!).
We had a good night last night and a good day today overall, though my head is swimming with medical stuff.
This morning, the respiratory therapist and nurse brought up the idea of taking E off of the NIV NAVA machine, which is what kicks in and breathes for him when he has apneic episodes. He’s having so few of these anymore (though still a fair amount of bradys and desats) that both the nurse and RT thought he could be weaned and go to continuous forced air via his cannula. This would still provide some backup and stimulate him to breathe if he didn’t, but wouldn’t give him the puffs that basically breathe for him. I’m not going to lie, the thought made me really nervous. As much as I want to trust the medical professionals, this just felt like a really big step when just yesterday we were implementing more support in the form of increased caffeine and starting him on a steroid inhaler.
The nurse invited me to attend daily rounds to discuss his care with the rest of the team, and I was relieved when his doctor said it might be a little too soon to wean off the NIV NAVA. Instead, she’d like to give him a few more days on the Flovent and let him gain more weight, and reassess in a few days.
Another discussion item in rounds was his elevated heart rate. Since boosting his caffeine he’s had a few episodes where his heart rate goes up really high (into the low 200s), which sets off the alarms and is always a little scary. The doctor assured us that periodic high heart rate episodes aren’t harmful, and that the benefits of the caffeine outweigh the negatives. She said we don’t typically worry about a high heart rate unless it’s sustained, or we start seeing other evidence his heart is working too hard, such as changes to his blood pressure or failure to gain weight. As of now his blood pressure is still good, though he did manage to lose 20 grams today, despite the fact that they bumped his supplementation up from 26 kcal to 28 kcal. The weight loss was really disappointing, especially since they’ve been telling us all along that weight gain is the priority. And the fact that it coincided with the increase in caffeine and higher heart rate has me a bit concerned. We’ve been told a day of occasional loss isn’t a big deal, as long as it doesn’t become a pattern. Here’s hoping it was a fluke and we have a nice gain tomorrow.
Despite the medical overload and the disappointing weight loss, today was a good day overall. He stayed on 21% oxygen almost all day and had way fewer events than the last couple days.
Oh, and something happened tonight that made me smile. I had given Theo a fortune cookie this evening and, well, I think I may need to save this…
Keeping up with the Hoffmans 