NICU Life in 2018, Part 2

Different hospitals have different specific policies. Our NICU was absolutely lovely, but it’s now a pretty old facility. Next year, they are due to open a large, lovely new one that is to have all kinds of fanciness. Like parents can stay overnight with their babies whenever they want levels of fancy. So bear that in mind when you read these.

On my first visit to the NICU, I could barely stand, much less walk. So that was fun.

Before the Baby was delivered, they had given my husband and me bracelets with her ID number and name on them. We were to wear them at all times and preferably not take them off until she came home. (As it turned out, 12 weeks was longer than the life span of the bracelet’s structural integrity, so we had to carry them with us.) This was the first layer of security.

We showed our bracelets to everyone, starting with the security guard at the entrance. Then we had to sign in at the log book. Then we scrubbed in. Wash hands and arms to the elbow with soap. The sink had a timer for rinsing. Pat dry with paper towels. Apply hand sanitizer to hands and arms.

Then we made our way to the Baby’s isolette. There, we spoke to her nurse and showed our bracelets again. Finally, we were face to face with our little one.

By the time I met the Baby, she was 28 weeks, 4 days gestational age. She was so tiny. She was born just over 2.5 pounds, but hadn’t started gaining weight yet. She was jaundiced, so she was under the billi lights. (Eventually they had to go all the way up to three lights.) Because of the constant light shining on her, she wore a mask over her eyes. Also because of the lights, she wasn’t swaddled, either.

It was the weirdest thing. I remember feeling so very out of it because of the pain killers. Exhausted. In pain. And here was this tiny, helpless creature who was just suddenly there. She had been in me; I’d felt her kicks. And then she wasn’t.

Many women bond with their babies from the moment they get a positive pregnancy test. After two prior losses, though, that was never me. I went to every ultrasound expecting bad news. Her kicks stressed me out because they triggered my sensory problems. And I realized that I found pregnancy utterly bizarre on a psychological level. The very notion of people growing inside people is just so weird.

To be honest, we really didn’t start the bonding process then. Maybe we would have if the drugs hadn’t effected me so strongly. Or if I’d been less exhausted. Or if she’d been full term. So I sat in my wheelchair and stared at this strange, but precious, little creature.

It would be two more days before I was finally able to hold her.

NICU Life in 2018, Part 1

After I was hospitalized for preeclampsia, and after they were able to get me stabilized, they sent the neonatologist on duty to come talk to us. He handed my husband and me sheets of information about the risks of prematurity, about the statistics for various gestational ages, about the odds of various long term disabilities. I don’t really remember what he said, to be honest, I was either still on magnesium or freshly off of it, so I was very fuzzy.

Weirdly, I had looked up premature birth statistics just a few weeks earlier. My mom thought I was nuts, but it came in handy. I’d decided that if I ended up having a preemie, I was in a pretty good place, gestationally speaking, and things would be okay, even if somewhat rough. Still, though, as I read over the sheets, I decided that I really wanted to make it to 32 weeks. That seemed good. (Spoiler: it didn’t happen that way.)

On the day that they decided I needed to give birth, the neonatologist returned. This time, he brought consent forms for things like blood transfusions, medical procedures, etc. I had to sign paperwork acknowledging the risks of formula for a preemie. I was on magnesium again, though, so I wasn’t with it enough to be too anxious about all that stuff.

This being my first pregnancy and me being so early, they couldn’t safely induce. They had no idea if it would work or not. So they scheduled a c-section for that evening.

The anesthesiologist gave me a rather powerful drug cocktail, so by the time the surgery was finished, I was pretty much out. I remember hearing the baby cry a tiny cry and hearing the time of birth announced, but have no memory of getting back to my room. I drifted in and out of sleep for the rest of the evening and night.

Obviously, then, I didn’t get to visit my baby that night. My husband did, though. He took photos of her. She was a weird looking thing. She had jaundice but you couldn’t tell because her skin was so red. No subcutaneous fat, either.

She was born on a Sunday. I was on magnesium for 24 hours, so on Monday I was still hooked up, and when I finally came off of it, was still far too out of it to make the trek to the NICU. It was Tuesday night before I finally made it.

A Year Out

Well… my intention to write more often did not survive the switch to Daylight Savings Time. *eye roll* It was a really crazy spring and summer, though. Our little onion baby finally made clear that she was just not going to grow until we repaired the hole in her heart. So that’s what we did. It was done in August.

Back when she was in the NICU, I spent a lot of time on the internet reading about preemies and people’s experiences. Weirdly enough, though, nearly all of the blogs I found were from 2011. And about micropreemies. This may or may not surprise you, but neonatology has come a long way even since 2011.

As a result, I’ve been reflecting a lot on what my, and our, experiences were going through everything last year and what it was like to bring home a preemie with an NG tube and diagnoses of an ASD and CLD. I intend to write a little series about it so that people wanting to know now what it’s like can see.

But first, where do we stand now? The onion baby had, as mentioned, her ASD repair in August. Recovery was a bit difficult for her, mainly because she wasn’t into the whole sleeping thing, but we left the hospital a week after entering with a significantly happier baby. She was even happier after being home for a few days.

She went through a rough patch a week after that when the cardiologist decided to decrease her diuretic. Her breathing became easily labored and for several days we were quite concerned, but after the weekend her body adjusted and she was breathing much more easily but still without any visible swelling.

We’re now waiting for her pulmonology appointment next month to see how her lungs are doing. Do they still need help staying dry (as it were)? Etc. In the meanwhile, she is gaining weight well, keeping her food down better than ever, and is basically the happiest baby I have ever known.

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A year ago, we had recently been told she has an ASD, but we were hoping it would close on its own still. A year ago, we were wondering why she wasn’t eating well. We were frustrated that she wasn’t home yet. Exhausted from NICU life.

A year ago, we were deep in the NICU slog, the one where babies seem like they’ll never figure out how to eat properly.

A year ago, we had no idea that bringing her home would be far harder than we had ever imagined.

A year ago, we had no idea that she would bring us more delight and joy than we could ever have imagined.

A year ago, we had no idea what was in store for us.

My Baby is an Onion & Other Stories, Part 3

We made it through the holidays without much fuss. We were handed off to a dietician associated with our cardiologist who gave us various directions as to how to feed our baby, and that was basically the most exciting thing that happened all December.

Come January, the appointments with various specialists started anew. Our initial pulmonologist referral had been sent to UCSF, but after the baby was hospitalized we ended up at UCD. (Thankfully — much closer!) We were even able to get the post-hospitalization appointment moved to the first part of the month.

After our experience in the hospital with oxygen, we decided we would ask the pulmonologist for supplementary oxygen for feedings in the hopes that it would get the baby off of her NG tube faster. He thought that sounded like a good plan and ordered a sleep study, thinking that it would show a lot of desats over night, which would help justify the need for oxygen to the insurance company. It would also have the added benefit of helping her gain weight.

Before the sleep study could be followed up on, though, we had a cardiology appointment. And here the echocardiogram showed that the right side of her heart had enlarged. Furthermore, he said that giving her oxygen would just speed up heart failure. We were sent home with an appointment to see the surgeon in a month.

Things were really getting exciting now. It had become clear from our visit to the pulmonologist that our baby’s health problems had, well, layers. There was no one explanation for why she had trouble breathing and trouble gaining weight, much less one for why she had problems with edema. She was premature. She had a hole in her heart. How much of a role did my mom’s family’s genetic tendency towards weak lungs play? Everything was connected, and every time we thought we had a solution, a complication popped up.

It quickly became clear, though, that the situation with her NG tube was becoming untenable. By this point, she had had the tube for nearly six months, and it was past its welcome in her throat. Her gag reflex became extremely sensitive, to the point that it was impossible to give her a pacifier and nearly impossible to give her a bottle. The volume she was able to take by mouth went down to a mere 10-15 ml, and she was just spitting up a lot.

Faced with this, coupled with the fact that she could not have oxygen, we decided to have a gtube placed. Her eating problems were here to stay, and it’s vital that she maintain her weight gain so that her lungs have enough calories to keep growing. (Ironically, she lost weight as a result of the gtube surgery and fell five percentiles, she has been steadily regaining weight since then, though.)

And that brings us to where we are now. She had her surgery two weeks ago. She is happier than ever, ecstatic that her hated face tube is gone. Now comes the hard part, though. Now we are dealing with a feeding aversion, the one thing we had all done our best to avoid.

My Baby is an Onion & Other Stories, Part 2

When we left the NICU, nearly everyone was working under the assumption that the primary culprit for our baby’s issues was her heart. The NICU set us up with a cardiologist appointment within a week of her arriving home. Their pulmonology referral, while considered important, was directed for about a month after coming home, and honestly, they thought it would take longer than that to get an appointment. When all was said and done, we came home in November but the pulmonology appointment we ended up with wasn’t until January.

It was at the cardiology appointment that things started getting muddy. The cardiologist explained to us that atrial septum defects are rarely symptomatic in babies and that her hole was relatively small. It was too large to let it go completely, but not so large that it was an emergency. He said he knows that babies don’t read textbooks, but it really was unlikely that her problems were caused by her heart. We were dismayed, to say the least.

Our pediatrician, an excellent doctor, in my opinion, was keeping close tabs on us. At that point in time, we were going in weekly for weight checks. Baby was doing great as far as weight gain went, and she generally looked pretty good. There was just one problem. Her breathing.

About a couple of weeks after discharge, our pediatrician decided that she really did not like the look of the retractions she was seeing. Since my husband had recently been sick with a cold, she decided to play it safe and order a chest x-ray. Thanks to the magic of digital x-ray photos, we were back in her office right away, getting to see them with her. There was less haze than expected, etc., and she decided that for the time being things looked okay.

That night, however, she gave us a call. She had revisited our x-ray and spoken to someone from our NICU and they decided that we should return to the hospital. They suspected an infection, possibly even something that had been with her for several weeks by then. Our NICU didn’t have space for a baby with a suspected infection (which would require isolation), so we were sent off to a different hospital with a pediatric wing (which our local hospital doesn’t have).

We ended up staying for five very long, rather frustrating days. (Teaching hospitals, incidentally, are odd places, and I hear that they are really great for when you have something difficult going on, but I am generally not a fan of primarily interfacing with med students and residents. They basically end up acting like middle men, taking all of your questions about treatment to the main doctor and then coming back to you and the whole process can take forever, or at least feels like it.)

The good thing about the hospitalization was that our baby was seen by a pulmonologist right away instead of needing to wait over a month. He determined that it was a mistake to supplement with sodium chloride as it was counteracting the work of the diuretic. The body, apparently, can handle a certain level of sodium deficiency fairly adeptly. She was given two rounds of Lasix (a pretty strong diuretic), lost 100 g of water weight in one day, taken off of her sodium chloride, and had her normal diuretic’s dosage increased. She looked better, breathed better, and was, in fact, much better. We were sent home.

While she was in the hospital, they also checked her heart function as they thought that perhaps her heart was failing and that that would explain her edema. As it turned out, all the blood tests came back very clean, as did her EKG.

On top of all that? They had given her oxygen support the first couple of days and she had looked better than ever. She had, for the first time ever, finished taking a whole bottle by mouth and instead of looking exhausted, had looked chipper, excited, and almost as though she wanted more.

Now it was becoming clear that things really weren’t as we had all thought. It was almost as befuddling as it was clarifying, and it seemed like for every question we had answered another one popped up. Unfortunately, we were heading into the holidays (we were discharged from the hospital on December 2), and everything just slowed miserably to a crawl. Christmas is ordinarily one of my favorite times of the year, but this year, I just wanted everything to be over with so that we could get on with the business of sorting out our little girl so that she could get the support she needed to get on with the fun part of being a baby.

My Baby is an Onion & Other Stories, Part 1

Twenty-eight week old babies actually do very well these days. They have a very high survival rate (something like 95%) and their chances of having life-long disabilities of various severities are something in the 10-16% range. Where once upon a time that wasn’t all that long ago, really, babies born this young could expect to have life-long, or at least childhood-long breathing problems, but our pediatrician tells me that she hasn’t seen a preemie released from the NICU with chronic lung disease for a rather long time. So long, in fact, that she isn’t even all that familiar with the pediatric pulmonologists in our area because she never has a kid who needs them.

Enter our baby.

Our baby did so well in the NICU that within only a couple of weeks of her being born (so somewhere around 30-31 weeks-ish), her neonatologist stopped by her crib and told us that all that was left to do was “grow her”. And this was basically how it proceeded until near the end of her stay.

She tolerated her feeds very well. She breathed pretty normally. She seemed to do well with the natural growing out of her medications. No NEC. No brain bleeds. No retinopathy of prematurity.

Then weeks 34 and 35 rolled around, bringing with them the need to train her how to bottlefeed. She did beautifully at first. She tolerated her milk in mouth very well. She enjoyed recreational breastfeeding (and if you didn’t know that that’s a thing, now you do). She took to the bottle with aplomb and adorableness.

Her initial oral feeds were all partial — they started her off with 5 ml out of her total volume and slowly increased until she was allowed to try to take the whole thing by mouth.

That’s where life got interesting. Suddenly, this tiny baby, who had dealt with all of the challenges thrown her way with spirit, simply could not even. And this, this is where all of her issues suddenly came out at once.

The nurse practitioner suddenly realized that no one had ever ordered an echocardiogram for our baby (a standard procedure). A hole was found in her atrial septum. When it was redone a month later, it hadn’t changed at all. She was dubbed a cardiac baby.

In the meanwhile, final attempts to wean her off of her inhaler and diuretic were deemed to have failed and she was put back on them. She had reoccurring fast breathing spells that no one quite understood because they went away at night.

The occupational therapist noticed that our little one had sensory sensitivities, more so than was normal for a preemie. Light, sound.

We went from flying through the NICU to a grinding halt. Where once they had talked of discharging her at 36 weeks, they now were trying to figure out how best to help her so that she could leave at all.

I stopped my attempts at breastfeeding her. She lacked the strength and stamina to do it well. We focused on trying to teach her how to take a bottle. It was hard for her. Very hard indeed. More and more her feeds ended up gavaged. Suddenly, they wanted to send us home with an NG tube.

We buckled up and set ourselves to learning how to place and manage an NG tube. (As our pediatrician points out, there’s a giant hole in the back there and it’s kind of hard to miss, so placement is the easy part.) It was stressful training, admittedly. The baby really didn’t care for it, and who could blame her. How would you feel about someone swaddling you up tightly and then sticking a tube up your nose and down your throat once a day?

Eventually we nailed it. The nurses were amazing. We were trained by several different ones, so we were able to accumulate a variety of viewpoints and tips.

Suddenly, we were going home. We were sent home with a referral to a pulmonologist and an appointment with a cardiologist. We thought we were looking at something very normal, that a few weeks at home would be all our baby needed to learn how to eat by mouth. That she just needed rest in a home environment and care from a cardiologist.

Little did we know.

2019

*blows the dust off the blog*

2019 has come roaring in with a vengeance. It brought a flurry of appointments with various specialists, an unexpected pivot, and yet another hospital stay. We are now coming up on March, nearly the end of the first quarter of the year, and in many ways it feels as though the year has only just begun

In the second half of last year, we finally had our first baby. After two losses, four years, preeclampsia at 27 weeks, a c-section at 28 weeks, and nearly 12 weeks in the NICU, we brought our first baby home from the hospital. Our wee one is a little girl who is doing very well. Odds are relatively high that she will end up with developmental delays or some sort of disability given her premature birth, but so far most things are proceeding normally.

I like to call her the Baby. Probably “the” should be capitalized, but I never do. My husband calls her Tiny Bear and Snugglet. Cuddlebug works, too. She’s a very happy baby, she grows pretty well. She has health challenges. She managed to come home from the NICU with chronic lung disease and an atrial septum defect that work together to make her life difficult. She eats by mouth very poorly and came home from the NICU with an NG tube up her nose and down her throat.

The short of it all is that we suddenly ended up having a gtube placed last month. Once the decision was made, everything happened rapidly thanks to a kind office worker who called us when the surgery clinic had a cancellation. Our initial surgical consult had been scheduled for 2/19, but she had surgery on 2/20. It’s been an adjustment, but overall the signs point to us having made the right decision.

So that’s how 2019 began. We’ll see where it goes from here.

“We stand upon the precipice of change. The world fears the inevitable plummet into the abyss. Watch for that moment… and when it comes, do not hesitate to leap. It is only when you fall that you learn whether you can fly.” – Flemeth

Writing and Mondays

I keep trying to write new posts. I just deleted four drafts that were each months old by now. I am sorely out of practice and also keep not having anything interesting to write about… So I’ve decided just to write stuff and see what happens, because I desperately need the practice.

I discovered that my blog title was weirdly prescient when I got diagnosed with ASD last year. That ended up explaining a whole lot of things, really, about my life and the way I think and operate. It’s nice to have a diagnosis because it makes things official (no second-guessing) and gives me freedom to re-order my life. It also means that there’s a reason all that advice written for NTs about productivity and procrastination and stuff don’t really help me out all that much. As a result, I’ve been working on figuring out a way to order my life in such a way that it actually works for me: meaning that I get things done and manage my energy well.

Part of the problem is that while we moved into our house over two years ago now, we never really finished organizing/unpacking it. What really hasn’t helped in that regard is that we moved into my grandmother’s house before my parents finished clearing it out properly and that my mom keeps bringing more stuff from my childhood bedroom over… We’ve been organizing and getting rid of things in cycles over the last couple of years, though, and a few months ago did another big push through it. We gave some furniture to my brother’s family (who changed their minds about wanting it now that they’ve moved into a bigger house) and got rid of a bunch of things thanks to the 1-800-Got-Junk guys. They’re pretty amazing. Not cheap, but amazing. Plus, they work to keep stuff out of landfills when possible, which I like a whole lot better than taking whatever can’t be donated to the landfill myself.

At least for me, though, that sort of work requires a certain level of mental dedication that borders almost on obsession, so it’s a pretty exhausting process, plus all the regular housework gets neglected. The last major push, though, should’ve been just that — the last major push. There are still a whole lot of things that need to get done, but I think that from here on out they can be done in smaller chunks.

Thus, my big goal for 2015 is figuring out how to balance my days. I have sooo many projects I want to do and I never feel as though I could possibly do all of them. But if I can get my days balanced out properly by learning how to transition gracefully between tasks… Well, then that might solve part of that problem.

Part of this is working through Mondays. Mondays are important days for me: they tend to set the tone for the whole rest of the week. The problem is that I am often really tired on Mondays, probably from going to church and talking to people and all that. This has the tendency to make Mondays really unproductive for me, which doesn’t set a good precedent for the rest of the week. But I finally hit upon an idea. I will focus the morning on prepping to bring lunch to my mom and husband at work, which includes deciding about any groceries I might need for the coming week as well as figuring out what on earth to bring for lunch. Then when I come home in the afternoon (usually mid-afternoon), I can focus on thinking about the coming week, making lists, and doing any small tasks that might have been forgotten or neglected over the weekend. This way I can fit in whatever rest time I need, take a slower pace through the day, and still prepare and be productive. Then, on Tuesday, I can tackle the bigger tasks, all ready for the week to come.

Hey look, I finished a post I’m moderately happy with.

Checking in with 2014

I just realised that the first quarter of 2014 is already nearly over. Maybe that’s slightly premature, but when a month is hitting its halfway mark, I start considering it “nearly over”. It’s a bit hard to believe, honestly. I always kinda expected time to flow more quickly the older I got, and certainly it did quite a lot of that in seminary. It’s still crazy to think of how quickly those three years flew by. But then, when we spent a year in Illinois, time went by a whole lot more slowly. Probably because I had very little to do compared to what I had going on in, you know, graduate school.

And now that we’re more or less settled into our home, I’m finding whole new ebbs and flows to the passage of time. During the holidays, for example, it goes by super quickly. When you’re waiting to find out about the viability of your pregnancy, it goes by excruciatingly slowly…

And that’s more or less how this quarter has gone by. At times, excruciatingly slowly and others incredibly quickly. The last month in particular has gone by pretty quickly, but, then, I’ve been pretty busy.

I started this year with goals and ambitions, but those plans got sidetracked really quickly. Now, though, I’m getting slowly back into my rhythm. I’ve been really busy, making up for lost time and trying like crazy to get a whole bunch of projects done in a very short amount of time. For the most part, I’ve been succeeding, which is great. I’m looking forward to how things go from here.