There's been a lot going on lately. A LOT. All of the care providers that are seeing my son, Grunts, are very worried about his weight gain (or lack thereof). There is talk of having him hospitalized to fatten him up. And next week we are going to an aerodigestive clinic, where different specialists (GI, pulmonology, ENT, nutrition, etc.) will meet with us at once and discuss what to do from here. The next day, Grunts is scheduled for lots of procedures that will hopefully also shed some light on his feeding issues.
But this post is not about that. I can't write that post right now, because I'm still processing everything. This post is about You, the Preemie Parent, and taking care of yourself.
Yes, it's going to be one of those posts. I can hear you groaning.
Every parenting blog ever probably has a post about how important it is for you to take care of yourself. It's cliche, it's annoying. But it's true. Perhaps even more true for the parent of a preemie or NICU baby. If your child is in the hospital, or at home with special needs, when was the last time you thought about taking a walk, or eating a healthy meal, or even taking five minutes for yourself?
But right off the bat, let me tell you how upset I get when I hear these blogs talk about taking care of yourself so you can be a better parent. Yes, our children are among our top priorities. And yes, we want to do everything possible to be the best parent we can be. But let me posit the outrageous notion that even though we are parents, we are also human beings, and as such we deserve to be healthy and happy for our OWN sakes. And the delicious icing on the cake is that it will also benefit our children and our families.
That out of the way, I am the pot calling the kettle black. How dare I, a mom who as of writing this post, can't even remember the last time I showered, tell you to take care of yourself? Because it's been on my mind a lot lately, and I want to be a better person right along with you.
There are three facets of your health I want you to consider:
1. Hygiene
I am also not going to be one of those bloggers who tells you to run a comb through your hair or put on some makeup. That is another thing that bugs me to no end. If you are a female parent, or a female at all, our whole lives and all of our choices are already under constant scrutiny from the media and general public. And who needs the extra pressure of feeling like we have to look beautiful on top of being a perfect mother, partner, employee, and human being?
No. I'm not talking about that. I couldn't care less if you wear leggings all day, every day (guilty) or if you show up to a doctor's appointment with mismatched socks, tangled hair, and bags under your eyes. Wear those bags proudly if you want, you're a parent and you've earned them.
I'm talking about basic hygiene, which is tied to your health. Brush your teeth. (Most days, I only get one brushing in, and some days it doesn't happen at all. I know, gross. My sister-in-law, studying to be a dental hygienist, would be appalled.) Try to take a shower at least every other day. Clip your nails and wash your hands for twenty seconds and do the very basic things you need to do to feel clean. It is surprising how these little things, that can take mere seconds, are hard to do when you're a parent. At the end of a stressful day (ahem, otherwise known as "a day" for me), the last thing I want to do is take an extra minute to floss before I collapse into bed. Especially when sleep is precious and short. But I also don't want to deal with gingivitis and other health complications that come from not taking care of my teeth. And while doing these things will not make you feel like a model, you will at least start to feel a little more in control of your life.
2. Physical Health
This one is the hardest facet to fit into my daily routine. I've always struggled with my weight. While most people work to try to get rid of the baby weight they gained during pregnancy, I didn't have that problem. Grunts was born at 29 weeks so I never really got that big with him. My recent weight struggles have all been postpartum, and happened because of circumstance: we have to hold Grunts upright for thirty minutes after feeding, so that involves sitting. A lot of times I have to hold him while he sleeps, which involves more sitting (often with really bad posture). I don't often have time to make myself a healthy lunch, so I eat whatever is lying around, mostly carbs and cheese. I might be able to go to the gym or take a class every once in awhile, but not lately, as I'm recovering from a back injury. We try to go on a walk most days, but winter is coming and it's increasingly cold outside. On top of taking care of Grunts and attending his various medical visits, physical health is the furthest thing from my mind.
But you have to start somewhere. And while that thirty-minute walk may not burn tons of calories, it's movement, which is great when you otherwise sit all day. Plus the extra vitamin D and the boost to your mental health. Getting outside is great for your baby too, and can help them sleep better! If you're able to, try to take one class a week while someone else watches the baby. Get up and move around the house every hour if you're stuck holding the baby and pumping or feeding. (Grunts tries to help with this by making us walk around the house with him while bottle-feeding.) Do five minutes of yoga stretches right before bedtime. The little things can add up.
As for eating better, take thirty minutes a week to prep a few meals, or a few minutes at the end of each day. Splurge on some healthy frozen meals that are easy to pop in the microwave. Try not to keep junk food on hand and instead stock lots of healthy snacks like nuts and fruit. (I have to do this; if we have chips or candy in the house, I will eat it all in one day.) As with everything, remember balance: on a bad day, eating some candy can be good for your mental health and won't kill you. But just don't eat ALL the candy. (Ahem, talking to myself here.)
Yadda yadda yadda. I'm sure you already know all of this. And it's so easy to say "Oh, I'll have time to exercise and eat healthy when my kid is bigger!" But honestly, because I have a crystal ball and can see into the future, there's always going to be something, some stress or event or just daily craziness when you have kids. Being physically healthy needs to be a lifetime habit, not something to put off until tomorrow. What keeps me trying is the scary risks and complications that come from being obese. I'm 35, so it won't be long before my weight makes diabetes, heart disease, or blood clots more likely. I want to be healthy so that I can live to a very old age with my spouse and child! Again, don't beat yourself up because you have days when it's just not going to happen. But when being healthy is part of your routine, it will become more of a priority.
3. Mental Health
This is perhaps the most important item on this list. Good mental health ties everything together and can make you the best version of yourself.
How do you achieve this? It looks different for everyone. It can be something as simple or small as stepping away from the hospital for a few minutes to enjoy some fresh air. Maybe for you stepping away means taking a walk and not looking at screens for awhile. Or maybe you would benefit from an hour of screen time, like a phone game, social media, or Netflix. No judgment here on how you relax your brain. (Just try to not use screens before bedtime.) So get your partner or a babysitter to watch the baby while you read, go to a coffee shop, watch a movie, get a massage, play a video game, or do some goat yoga. Whatever floats your boat. What matters is that it's relaxing for YOU.
Or, you could take some bigger steps. Maybe you're dealing with depression or anxiety from having a preemie, or at the very least a whole lot of stress. This could mean talking to your doctor about medication. Or, in my case, finally talking to a therapist. I actually talk to two different therapists. Along with our preemie services through Early Intervention, we can visit with a family therapist, who helps us with stress related to preemie-specific issues. She is great to vent to when my son isn't eating well or to help us process all of his medical visits. I also took the leap and started seeing another therapist for more personal issues, including anxiety. I've only seen her twice so far in the past 11 months, but it's been extremely beneficial. She is a proponent of meditation and self-compassion, which is right up my alley.
Therapy used to have a much bigger stigma attached to it, but I think (or at least hope) that it's becoming more the norm these days as mental health awareness increases. I truly believe that almost everyone would benefit from seeing a therapist. Your family may be supportive, and you may be able to tell your partner or friends just about everything, but there's nothing like having an impartial, trained professional to dump all your problems on and who will also be able to give you helpful advice on how to deal with said problems. If your child is currently in the NICU, there is probably a social worker on staff who can give you resources on how to find counseling and mental health services.
So now, I'm going to try to take my own advice and take Grunts on a walk, because if I have time to write this blog post, I have time to do that!
What are your strategies for staying healthy while taking care of your preemie?
Thursday, November 1, 2018
Thursday, October 11, 2018
10 Tips for Surviving a Doctor's Visit With Your Preemie
If you have a preemie, then there's a good chance that visits to the doctor's office are a huge part of your life. Sometimes you probably feel like you LIVE at the doctor's office. When my son, Grunts, was on supplemental oxygen, we were going to his pediatrician's office almost weekly for room air challenges. This was in addition to other appointments with pulmonologists, ophthalmologists, and GI specialists, to name a few.
It's been awhile since Grunts was on oxygen but we still make our rounds to all the medical professionals for Grunts' feeding issues. And we wouldn't have survived or kept our sanity if not for keeping these tips in mind. Some of these tips work for other outings as well, but honestly, the doctor's office was just about the only place we went for the first few months after our son's homecoming.
If your child is on supplemental oxygen or has other special equipment:
1. Bring someone with you. If you have a partner, bring them along. If not, bring your parents, or sibling, or friend, or recruit your next-door-neighbor. You will be thankful that you did! They can help carry your baby's oxygen tank or the diaper bag. And they can sit in the backseat and watch your child while you drive to the doctor's office, or vice versa. (This is a good practice for any newborn who doesn't yet have good head/neck control and who might have trouble in a car seat.) Your plus one can also just be your moral support, especially if the appointment is about a more serious matter. When we went to our son's first post-NICU doctor's visit, I was in tears from lack of sleep and overwhelmed by...well, everything, but especially our first trip out of the house. I'm so glad my husband was there to comfort me.
2. If you have to go alone, Ask for or accept help when you get there. I have never been to a doctor's office with Grunts where a nurse didn't ask if they could help carry some of our stuff. Usually they I let them grab the diaper bag while I got Grunts and his oxygen tank. My natural inclination is to shoulder everything myself, not out of pride, but because I hate inconveniencing other people. It's not worth it! The nurses are nice people, and they wouldn't offer help if they weren't genuinely willing. And you don't want to accidentally drop something (goodness forbid your baby) while struggling through the door with your unwieldy pile o' stuff. They will often offer to help you back out to your car, as well. Cheers for those amazing nurses!
3. Get all the free stuff. Our insurance paid for cannulas and Tender Grips (those little stickers that hold the cannula on baby's head), but it was a pain to get them because we had to go to the medical supply store to pick them up, and we only got four cannulas a month (the Tender Grips technically weren't even free; the store threw in one pair as a courtesy, but have you ever tried to make those stickers last more than a week?!). Grunts throws up a lot, and often the vomit comes out of his nose, making the cannula gross. So we went through more than our allotted four. But since we were going to the doctor's office so often, I'd ask for an extra cannula and stickers almost every time we went in. At first I felt like a freeloader, but that's what they're there for! Make sure to check with the office first, in case they have a special policy regarding this, but it doesn't hurt to ask.
4. And while we're on the subject of cannulas, Bring extras with you! You never know when your baby will need a new one. We always had an extra cannula and several pairs of extra stickers in our diaper bag. Luckily, we never had to switch cannulas while we were out, but you can never be too careful. I was terrified that Grunts's cannula would, I dunno, spontaneously combust when we were out and about and we'd be stuck without a fresh one.
For all preemies:
6. Use the free diapers! Sure, you have loads of diapers at home; in fact, you may even have a whole room for boxes of diapers! But you probably have a finite amount in your diaper bag, so hang on to those precious spare diapers and use the ones at the doctor's office when you need to, unless you are using cloth diapers of course. Then you won't have to replenish the supply in your diaper bag as frequently. The same goes for wipes.
7. If you plan to feed your baby at the doctor's office, Bring a burp cloth, bib, and change of clothes for both of you. If you've read my other posts, you know that Grunts vomits. A LOT. Mostly after meals, but anytime, really. If you need to feed your baby at the office and your baby is prone to reflux and vomiting, or even just normal baby spit-up, trust me. YOU WILL BE GRATEFUL for the spare clothes.
8. Bring a blanket. This is helpful not only if it is cold out, but also to shield your preemie from prying eyes (and hands). I find that most adults are actually respectful of boundaries when it comes to new babies, but kids do not have the same self-control. And there WILL be kids at the doctor's office. For some reason kids LOOOOVE babies and want to touch, hold, and breathe on them. And I'm sorry, but older kids are big buckets of germs and quite frankly are a preemie parent's nightmare. A strategically-placed blanket over the car seat will help kids resist the temptation to touch your baby.
9. If that doesn't work, or it's too hot out to cover the car seat with a blanket, Hang a sign on the car seat or somewhere people will see it. There are lots of cute preemie signs out there asking people not to touch your baby. You can make your own, or you can buy one that I designed here. It's a polite way to show people that your baby is OFF LIMITS without having to explicitly tell them so.
10. Be prepared to answer the age-old preemie question: how old is your baby? It's almost the first question people ask about any baby. But the well-meaning parent in the waiting room might not understand how complicated the answer is for us. There are usually three options: a) You can tell them your baby's actual age, although then you might get a comment on their size; b) You can tell them your baby's adjusted age, which is usually the easiest answer; or c) You can respond with your baby's actual and adjusted ages. Only use this option if you are prepared for a conversation about prematurity, because a lot of people don't understand what you mean by "adjusted age." My own answer to this question usually depends on how I'm feeling that day. I'm not a super chatty person anyway, so I usually go with option B.
Do you have any additional tips for surviving a trip to the doctor's office? Share them in the comments section!
It's been awhile since Grunts was on oxygen but we still make our rounds to all the medical professionals for Grunts' feeding issues. And we wouldn't have survived or kept our sanity if not for keeping these tips in mind. Some of these tips work for other outings as well, but honestly, the doctor's office was just about the only place we went for the first few months after our son's homecoming.
If your child is on supplemental oxygen or has other special equipment:
1. Bring someone with you. If you have a partner, bring them along. If not, bring your parents, or sibling, or friend, or recruit your next-door-neighbor. You will be thankful that you did! They can help carry your baby's oxygen tank or the diaper bag. And they can sit in the backseat and watch your child while you drive to the doctor's office, or vice versa. (This is a good practice for any newborn who doesn't yet have good head/neck control and who might have trouble in a car seat.) Your plus one can also just be your moral support, especially if the appointment is about a more serious matter. When we went to our son's first post-NICU doctor's visit, I was in tears from lack of sleep and overwhelmed by...well, everything, but especially our first trip out of the house. I'm so glad my husband was there to comfort me.
2. If you have to go alone, Ask for or accept help when you get there. I have never been to a doctor's office with Grunts where a nurse didn't ask if they could help carry some of our stuff. Usually they I let them grab the diaper bag while I got Grunts and his oxygen tank. My natural inclination is to shoulder everything myself, not out of pride, but because I hate inconveniencing other people. It's not worth it! The nurses are nice people, and they wouldn't offer help if they weren't genuinely willing. And you don't want to accidentally drop something (goodness forbid your baby) while struggling through the door with your unwieldy pile o' stuff. They will often offer to help you back out to your car, as well. Cheers for those amazing nurses!
3. Get all the free stuff. Our insurance paid for cannulas and Tender Grips (those little stickers that hold the cannula on baby's head), but it was a pain to get them because we had to go to the medical supply store to pick them up, and we only got four cannulas a month (the Tender Grips technically weren't even free; the store threw in one pair as a courtesy, but have you ever tried to make those stickers last more than a week?!). Grunts throws up a lot, and often the vomit comes out of his nose, making the cannula gross. So we went through more than our allotted four. But since we were going to the doctor's office so often, I'd ask for an extra cannula and stickers almost every time we went in. At first I felt like a freeloader, but that's what they're there for! Make sure to check with the office first, in case they have a special policy regarding this, but it doesn't hurt to ask.
4. And while we're on the subject of cannulas, Bring extras with you! You never know when your baby will need a new one. We always had an extra cannula and several pairs of extra stickers in our diaper bag. Luckily, we never had to switch cannulas while we were out, but you can never be too careful. I was terrified that Grunts's cannula would, I dunno, spontaneously combust when we were out and about and we'd be stuck without a fresh one.
For all preemies:
6. Use the free diapers! Sure, you have loads of diapers at home; in fact, you may even have a whole room for boxes of diapers! But you probably have a finite amount in your diaper bag, so hang on to those precious spare diapers and use the ones at the doctor's office when you need to, unless you are using cloth diapers of course. Then you won't have to replenish the supply in your diaper bag as frequently. The same goes for wipes.
7. If you plan to feed your baby at the doctor's office, Bring a burp cloth, bib, and change of clothes for both of you. If you've read my other posts, you know that Grunts vomits. A LOT. Mostly after meals, but anytime, really. If you need to feed your baby at the office and your baby is prone to reflux and vomiting, or even just normal baby spit-up, trust me. YOU WILL BE GRATEFUL for the spare clothes.
8. Bring a blanket. This is helpful not only if it is cold out, but also to shield your preemie from prying eyes (and hands). I find that most adults are actually respectful of boundaries when it comes to new babies, but kids do not have the same self-control. And there WILL be kids at the doctor's office. For some reason kids LOOOOVE babies and want to touch, hold, and breathe on them. And I'm sorry, but older kids are big buckets of germs and quite frankly are a preemie parent's nightmare. A strategically-placed blanket over the car seat will help kids resist the temptation to touch your baby.
9. If that doesn't work, or it's too hot out to cover the car seat with a blanket, Hang a sign on the car seat or somewhere people will see it. There are lots of cute preemie signs out there asking people not to touch your baby. You can make your own, or you can buy one that I designed here. It's a polite way to show people that your baby is OFF LIMITS without having to explicitly tell them so.
10. Be prepared to answer the age-old preemie question: how old is your baby? It's almost the first question people ask about any baby. But the well-meaning parent in the waiting room might not understand how complicated the answer is for us. There are usually three options: a) You can tell them your baby's actual age, although then you might get a comment on their size; b) You can tell them your baby's adjusted age, which is usually the easiest answer; or c) You can respond with your baby's actual and adjusted ages. Only use this option if you are prepared for a conversation about prematurity, because a lot of people don't understand what you mean by "adjusted age." My own answer to this question usually depends on how I'm feeling that day. I'm not a super chatty person anyway, so I usually go with option B.
Do you have any additional tips for surviving a trip to the doctor's office? Share them in the comments section!
Tuesday, August 28, 2018
To Eat or Not To Eat
If Grunts had his way, he would usually choose option B: Not To Eat. Mealtimes with Grunts have been a battle of wills for some time now, where one of us will eventually wear the other down. Usually it's him, and while I occasionally emerge victorious, it is still an uphill struggle.
It's hard to believe that in his early post-NICU days, Grunts was actually a pretty good eater. He would often eat more than he needed, and our Early Intervention specialists were always pleasantly surprised at his weight gain during weekly visits. Of course, he was eating every three hours around the clock, and the volume he needed was so small that it was easy to get it in him. He used to have the chubbiest cheeks, and I gave him the nickname "Butters" (to be honest, it kind of evolved from "Buddy," but it still fit with his growing girth).
But these days I don't really call him that anymore. I didn't stop on purpose; the nickname just naturally went away when his weight began to plateau and even drop a little bit.
One of the biggest problems is that Grunts has acid reflux, one of the most common ongoing problems among preemie infants. In fact, even most term babies have reflux at some point. With Grunts though, it's always been pretty extreme. It started getting really bad not long after he came home from the NICU. He'd still eat well, at first, but he started throwing up. A LOT. Not just a little "oh how cute, the baby's spit up!" But more like "the baby's vomited, bring me more burp cloths, a towel, a new shirt, a fresh onesie, the carpet cleaner, and can you hold him while I go take a shower?" It was projectile vomiting, the kind all the baby websites warn you can be a sign of a serious problem. Luckily, as far as we know it isn't something scary like pyloric stenosis, but it's uncertain whether he just has severe reflux, or if there's something else going on in his gut or esophagus. These days the vomiting is still happening; he might go a couple of days without throwing up, or he might throw up three times during the course of one meal, warranting emergency baths for everyone.
Obviously, this affects the daily volume of food he's getting. But honestly, I'd take the vomiting over the problem he developed next: just plain not eating. After awhile, Grunts' tummy must've been so miserable that he not only started eating much less, he developed a bottle aversion too. (Grunts has been bottle-fed practically since he started eating by mouth; we tried breast feeding for awhile, but he never quite got the hang of it.) Mealtimes became miserable affairs. We got to the point where Grunts would start screaming the moment he saw the bottle, before it even touched his lips. And if we did manage to get the bottle past those pursed lips, he would take the bare minimum he needed before refusing to eat more. He might take up to half his bottle before starting to scream again, and the rest of the meal would drag out an hour before we were forced to give up. During this time we worked closely with our speech/feeding therapist through Early Intervention. She urged us to not extend mealtimes past 30 minutes, which was good advice, but incredibly hard to stick to. I am a very stubborn person (maybe where Grunts gets it?) and I kept thinking 45 minutes in, "but he might take a little more now!" We started reflux meds, and this helped with the screaming (but not the vomiting). Grunts seemed overall more comfortable, but then he started becoming more aware of his surroundings, and then all he wanted to do during mealtimes was play. He'd smile at me with the bottle in his mouth, trying to get me to smile back. I fell for it at first, but I quickly discovered he was only trying to delay his dinner. He also has this little trick where he'll suck for a minute, and I think he's going to finally start eating, but then he spits the bottle out and smiles as if to say "fooled you, lady!" So, even though he seemed to be feeling better, he still wasn't eating enough and mealtimes were still long and tiring.
Eventually things would get better, but only for a little while. In the past months he's had a few good weeks, or even a couple of weeks in a row. Grunts would eat a reasonable amount, we'd rejoice, and I'd allow myself to relax a bit. But then his feedings would get worse again, and then we noticed that a pattern had emerged. Things got really good for awhile after we switched to Nutramigen, an expensive hypo-allergenic formula for his eczema; right after that mealtimes were the worst they've ever been. The stress was ever-present, since I felt like we were always feeding him. We went to a pretty strict 7-meal-a-day schedule, and that was incredibly hard. It was like he was a newborn again, since we were essentially feeding him round the clock. My husband and I got very little sleep and I cried during most of Grunts' meals. Once again I relied on the advice of our feeding therapist and our pediatrician; but at this point, even they were running out of ideas. And I swear we've tried every trick in the book, from feeding him in different positions, to different rooms, to dark rooms and busy rooms, while standing up, sitting on the floor, everything. What works one feeding might not work the next. Here are other things we've had to do to get him to eat:
-Singing the alphabet song on repeat
-Playing guided meditations on my phone
-Playing relaxing sounds like Tibetan singing bowls or Andean flute music
-Walking around the house in endless circles
We ended up switching formulas, and then yet again. We've wondered if he just thrives off of novelty and doesn't like to get in a rut. Or maybe he's just easily distracted by new sights, sounds, and flavors. No matter what, it keeps us on our toes, and it is utterly exhausting.
This week we will travel to the Children's Hospital so that Grunts can get an upper GI; he recently saw a gastroenterologist, and she recommended the procedure to rule out anything more serious than reflux. I honestly don't know what I want to find out. I don't want there to be anything physically wrong with Grunts, but if there is, maybe they can fix it and he'll be happier and more comfortable. And mealtimes won't be such a stressful experience for everyone.
Did/does your preemie have reflux or feeding difficulties?
It's hard to believe that in his early post-NICU days, Grunts was actually a pretty good eater. He would often eat more than he needed, and our Early Intervention specialists were always pleasantly surprised at his weight gain during weekly visits. Of course, he was eating every three hours around the clock, and the volume he needed was so small that it was easy to get it in him. He used to have the chubbiest cheeks, and I gave him the nickname "Butters" (to be honest, it kind of evolved from "Buddy," but it still fit with his growing girth).
But these days I don't really call him that anymore. I didn't stop on purpose; the nickname just naturally went away when his weight began to plateau and even drop a little bit.
One of the biggest problems is that Grunts has acid reflux, one of the most common ongoing problems among preemie infants. In fact, even most term babies have reflux at some point. With Grunts though, it's always been pretty extreme. It started getting really bad not long after he came home from the NICU. He'd still eat well, at first, but he started throwing up. A LOT. Not just a little "oh how cute, the baby's spit up!" But more like "the baby's vomited, bring me more burp cloths, a towel, a new shirt, a fresh onesie, the carpet cleaner, and can you hold him while I go take a shower?" It was projectile vomiting, the kind all the baby websites warn you can be a sign of a serious problem. Luckily, as far as we know it isn't something scary like pyloric stenosis, but it's uncertain whether he just has severe reflux, or if there's something else going on in his gut or esophagus. These days the vomiting is still happening; he might go a couple of days without throwing up, or he might throw up three times during the course of one meal, warranting emergency baths for everyone.
Obviously, this affects the daily volume of food he's getting. But honestly, I'd take the vomiting over the problem he developed next: just plain not eating. After awhile, Grunts' tummy must've been so miserable that he not only started eating much less, he developed a bottle aversion too. (Grunts has been bottle-fed practically since he started eating by mouth; we tried breast feeding for awhile, but he never quite got the hang of it.) Mealtimes became miserable affairs. We got to the point where Grunts would start screaming the moment he saw the bottle, before it even touched his lips. And if we did manage to get the bottle past those pursed lips, he would take the bare minimum he needed before refusing to eat more. He might take up to half his bottle before starting to scream again, and the rest of the meal would drag out an hour before we were forced to give up. During this time we worked closely with our speech/feeding therapist through Early Intervention. She urged us to not extend mealtimes past 30 minutes, which was good advice, but incredibly hard to stick to. I am a very stubborn person (maybe where Grunts gets it?) and I kept thinking 45 minutes in, "but he might take a little more now!" We started reflux meds, and this helped with the screaming (but not the vomiting). Grunts seemed overall more comfortable, but then he started becoming more aware of his surroundings, and then all he wanted to do during mealtimes was play. He'd smile at me with the bottle in his mouth, trying to get me to smile back. I fell for it at first, but I quickly discovered he was only trying to delay his dinner. He also has this little trick where he'll suck for a minute, and I think he's going to finally start eating, but then he spits the bottle out and smiles as if to say "fooled you, lady!" So, even though he seemed to be feeling better, he still wasn't eating enough and mealtimes were still long and tiring.
Eventually things would get better, but only for a little while. In the past months he's had a few good weeks, or even a couple of weeks in a row. Grunts would eat a reasonable amount, we'd rejoice, and I'd allow myself to relax a bit. But then his feedings would get worse again, and then we noticed that a pattern had emerged. Things got really good for awhile after we switched to Nutramigen, an expensive hypo-allergenic formula for his eczema; right after that mealtimes were the worst they've ever been. The stress was ever-present, since I felt like we were always feeding him. We went to a pretty strict 7-meal-a-day schedule, and that was incredibly hard. It was like he was a newborn again, since we were essentially feeding him round the clock. My husband and I got very little sleep and I cried during most of Grunts' meals. Once again I relied on the advice of our feeding therapist and our pediatrician; but at this point, even they were running out of ideas. And I swear we've tried every trick in the book, from feeding him in different positions, to different rooms, to dark rooms and busy rooms, while standing up, sitting on the floor, everything. What works one feeding might not work the next. Here are other things we've had to do to get him to eat:
-Singing the alphabet song on repeat
-Playing guided meditations on my phone
-Playing relaxing sounds like Tibetan singing bowls or Andean flute music
-Walking around the house in endless circles
We ended up switching formulas, and then yet again. We've wondered if he just thrives off of novelty and doesn't like to get in a rut. Or maybe he's just easily distracted by new sights, sounds, and flavors. No matter what, it keeps us on our toes, and it is utterly exhausting.
This week we will travel to the Children's Hospital so that Grunts can get an upper GI; he recently saw a gastroenterologist, and she recommended the procedure to rule out anything more serious than reflux. I honestly don't know what I want to find out. I don't want there to be anything physically wrong with Grunts, but if there is, maybe they can fix it and he'll be happier and more comfortable. And mealtimes won't be such a stressful experience for everyone.
Did/does your preemie have reflux or feeding difficulties?
Saturday, July 7, 2018
Home Sweet Home Oxygen, Part II
O frabjous day! Callooh! Callay! Grunts was weaned off his oxygen yesterday!
It's the end of an era, the end of a very long seven months. Grunts has been on supplemental oxygen since birth, and on home oxygen ever since he left the NICU. Daily maintenance of his oxygen was a huge part of our lives - filling up the oxygen tanks with our home machine, replacing Grunts' cannula every week or so, trying not to rip off his skin when we replaced his TenderGrip stickers, digging boogers out of the cannula prongs with a toothpick. Sure, we all got used to it, but it was never pleasant or convenient. There was also always the worry that there was some underlying cause to Grunts' being on oxygen for so long. Then there was the time when the pediatrician actually bumped his oxygen level up, which was extremely discouraging. It took a long time until we were able to turn his oxygen back down to 1/32, his starting point.
In the past few weeks Grunts did well enough on his in-office room air challenges that we were able to try the 12-hour home challenge. We were given a pulse oximeter and the okay to take his cannula off while we were home for those twelve hours. It was a stressful day. Grunts' lungs were strong enough that we were never really worried that his oxygen would drop too much while he was awake, but he had always had trouble keeping his oxygen up while he was eating, and I had no idea how well he breathed when he was in a deep sleep for long periods. But he did surprisingly well. The only time I was truly worried was when his heart rate dropped while he was sleeping in his crib, but a call to the after-hours nurse line assured me that as long as it didn't drop below 85 bpm for longer than a few minutes, and his oxygen were high at the same time (which it was), he was fine. But while Grunts slept better than ever that night, I couldn't sleep at all because the alarm on the pulse ox beeped every few seconds as his heart rate dipped down and then back up.
We put him back on oxygen, returned the pulse ox to the pediatrician, and patiently waited for results. That first challenge, Grunts didn't quite make it. He was so close! Our pediatrician wants kids to have oxygen levels above 90% at least 90% of the time during challenges, and Grunts was only at 90% oxygen for 89% of the time. Oof! It was disappointing, but I had told myself beforehand not to get my hopes up, and we had survived this long with oxygen, so a few more weeks wouldn't be that hard.
We scheduled his next challenge for a couple of weeks later. Our nurse was very optimistic that Grunts would pass this time. I still felt cautious, but secretly I had a feeling that the second time was a charm. This time we took the pulse ox home during the day, mostly so I wouldn't have to stay awake hearing the alarm sounding all night. There were a few times when his oxygen dropped (during a stroller ride and one meal) and I got pessimistic, thinking it would bring down his overall percentage. So we waited...and the next day, we got the best news! Our two usual nurses who had given us all of Grunts' in-office room air challenges were both on the phone; it was sweet, because the were both so excited to tell us. Grunts had passed his 12-hour challenge! We could turn the oxygen off! No other special instructions, no oxygen only at night or during mealtimes. Just rip out the cannula (I mean, take it out carefully) and be done with it!
I remember during previous room air challenges how strange Grunts looked without his cannula. He looked like a different baby. His nostrils were wide (probably from the cannula prongs) and his cheeks looked extra big. But the moment I officially took off his oxygen for good, he looked just like he should, just like our little Grunts.
Already life is so much easier. No more tripping over the cannula tubing. No more giant oxygen tanks that topple over and smash my foot. No more lugging around those heavy monstrosities. No more constantly pushing the cannula back in Grunts' nose when he pulls it out or rubs his face on our chests. No more worrying that it would come out at night or somehow get wrapped around his neck and strangle him. And, best of all, we know that Grunts' lungs have gotten stronger, that he's growing, and that he's headed in the right direction.
So we've achieved a big milestone. There are still other struggles like the constant feeding battles and gaining enough weight and practicing motor skills. But being weaned off oxygen removes such a huge weight (literally and figuratively). I'm proud of Grunts and happy to celebrate this latest victory.
When was your preemie weaned from home oxygen? What are some of the other victories that you've celebrated with your preemie?
It's the end of an era, the end of a very long seven months. Grunts has been on supplemental oxygen since birth, and on home oxygen ever since he left the NICU. Daily maintenance of his oxygen was a huge part of our lives - filling up the oxygen tanks with our home machine, replacing Grunts' cannula every week or so, trying not to rip off his skin when we replaced his TenderGrip stickers, digging boogers out of the cannula prongs with a toothpick. Sure, we all got used to it, but it was never pleasant or convenient. There was also always the worry that there was some underlying cause to Grunts' being on oxygen for so long. Then there was the time when the pediatrician actually bumped his oxygen level up, which was extremely discouraging. It took a long time until we were able to turn his oxygen back down to 1/32, his starting point.
In the past few weeks Grunts did well enough on his in-office room air challenges that we were able to try the 12-hour home challenge. We were given a pulse oximeter and the okay to take his cannula off while we were home for those twelve hours. It was a stressful day. Grunts' lungs were strong enough that we were never really worried that his oxygen would drop too much while he was awake, but he had always had trouble keeping his oxygen up while he was eating, and I had no idea how well he breathed when he was in a deep sleep for long periods. But he did surprisingly well. The only time I was truly worried was when his heart rate dropped while he was sleeping in his crib, but a call to the after-hours nurse line assured me that as long as it didn't drop below 85 bpm for longer than a few minutes, and his oxygen were high at the same time (which it was), he was fine. But while Grunts slept better than ever that night, I couldn't sleep at all because the alarm on the pulse ox beeped every few seconds as his heart rate dipped down and then back up.
We put him back on oxygen, returned the pulse ox to the pediatrician, and patiently waited for results. That first challenge, Grunts didn't quite make it. He was so close! Our pediatrician wants kids to have oxygen levels above 90% at least 90% of the time during challenges, and Grunts was only at 90% oxygen for 89% of the time. Oof! It was disappointing, but I had told myself beforehand not to get my hopes up, and we had survived this long with oxygen, so a few more weeks wouldn't be that hard.
We scheduled his next challenge for a couple of weeks later. Our nurse was very optimistic that Grunts would pass this time. I still felt cautious, but secretly I had a feeling that the second time was a charm. This time we took the pulse ox home during the day, mostly so I wouldn't have to stay awake hearing the alarm sounding all night. There were a few times when his oxygen dropped (during a stroller ride and one meal) and I got pessimistic, thinking it would bring down his overall percentage. So we waited...and the next day, we got the best news! Our two usual nurses who had given us all of Grunts' in-office room air challenges were both on the phone; it was sweet, because the were both so excited to tell us. Grunts had passed his 12-hour challenge! We could turn the oxygen off! No other special instructions, no oxygen only at night or during mealtimes. Just rip out the cannula (I mean, take it out carefully) and be done with it!
I remember during previous room air challenges how strange Grunts looked without his cannula. He looked like a different baby. His nostrils were wide (probably from the cannula prongs) and his cheeks looked extra big. But the moment I officially took off his oxygen for good, he looked just like he should, just like our little Grunts.
Already life is so much easier. No more tripping over the cannula tubing. No more giant oxygen tanks that topple over and smash my foot. No more lugging around those heavy monstrosities. No more constantly pushing the cannula back in Grunts' nose when he pulls it out or rubs his face on our chests. No more worrying that it would come out at night or somehow get wrapped around his neck and strangle him. And, best of all, we know that Grunts' lungs have gotten stronger, that he's growing, and that he's headed in the right direction.
So we've achieved a big milestone. There are still other struggles like the constant feeding battles and gaining enough weight and practicing motor skills. But being weaned off oxygen removes such a huge weight (literally and figuratively). I'm proud of Grunts and happy to celebrate this latest victory.
When was your preemie weaned from home oxygen? What are some of the other victories that you've celebrated with your preemie?
Thursday, May 31, 2018
Eclectic Lullabies
The sound of your voice is one of the most important gifts you can give to your preemie while they're in the NICU (and well beyond). Babies' sense of hearing develops long before their eyesight, and your soft voice can be comforting to them. They heard it in the womb, after all!
Preemies are special babies, so they deserve special lullabies! I've always found a lot of the traditional ones to be boring, so here are a few eclectic songs I've enjoyed singing to Grunts.
Preemies are special babies, so they deserve special lullabies! I've always found a lot of the traditional ones to be boring, so here are a few eclectic songs I've enjoyed singing to Grunts.
- "Moon River" - Henry Mancini and Johnny Mercer
- "Baby's Bed's a Silver Moon" - Alice Riley and Jessie Gaynor
- "Can't Take My Eyes Off You" - Frankie Valli
- "Your Song" - Elton John
- "The Rainbow Connection" - Paul Williams and Kenneth Ascher (from The Muppet Movie)
- "Baby Mine" - Frank Churchill and Ned Washington (from Disney's Dumbo)
- "La La Lu" - Sonny Burke and Peggy Lee (from Disney's Lady and the Tramp)
- "On the Front Porch" - Robert and Richard Sherman (from Disney's Summer Magic)
- "A Dream is a Wish Your Heart Makes" - Mack David, Al Hoffman, and Jerry Livingston (from Disney's Cinderella)
- "Once Upon a Dream" - Tchaikovsky, Jack Lawrence, and Sammy Fain (from Disney's Sleeping Beauty)
- "You'll Be In My Heart" - Phil Collins (from Disney's Tarzan)
- "Feed the Birds" - Richard and Robert Sherman (from Disney's Mary Poppins)
- "Once Upon a December" - David Newman and Stephen Flaherty (from Anastasia)
- "Edelweiss" - Richard Rodgers and Oscar Hammerstein (from The Sound of Music)
- "Into the West" - Annie Lennox, Fran Walsh, and Howard Shore (from The Return of the King)
- "Children Will Listen" - Stephen Sondheim (from Into the Woods)
Plus pretty much any Disney or Broadway song I can think of. Remember, anything can be a lullaby if you sing it slowly enough!
What are some of the songs and lullabies you sing to your preemie?
Sunday, May 20, 2018
A Series of Unfortunate (but Ultimately Fortunate) Events, Part III
As I mentioned before, being the parent of a preemie means embracing a new normal and letting go of expectations. To start with, I had to let go of my expectation of having a third trimester. At 29 weeks, I had no choice but to accept the fact that I was going into preterm labor. The labor progressed so quickly that I also had to let go of expectations surrounding the birth: no relaxation techniques that I practiced in my childbirth class, no exercise ball, no tub, no epidural or nitrous oxide.
Our tiny child came into the world in November 2017 with a tiny cry and a tiny body. Just 2 pounds 12 ounces. To put that into perspective, Grunts weighed less than a small stack of books, a snowshoe hare, and apparently a human brain (although how many of us have actually held a brain for comparison?).
Expectation: After birth, your baby will immediately be placed on your chest. You will spend some time in sheer awe of this life-changing event and the tiny human you just brought forth into the world. Eventually, this tiny human will start making its way towards your breast for their first meal. Later they will have their first bath and you will spend the rest of the day cuddling and bonding.
Reality: After birth, they will place the baby on your chest with a sheet of plastic underneath him. You will have less than a minute to spend in sheer awe of this life-changing event and the tiny human that you just brought forth into the world. Suddenly, they whisk him away from you, place him in an isolette, and intubate him. Then they take your baby out of the room and into the NICU. You're not sure exactly when he gets his first meal, but it will not come from your breast; it will be donor milk administered through a feeding tube. He won't get his first bath for quite awhile, and you won't get to hold your baby for three days.
My husband and I were allowed to go see Grunts that evening. Even though I was in fairly good shape, they wheeled me to the NICU in a wheelchair. We were lucky that our hospital had a NICU, and even luckier that it is a very nice one: each baby (or set of multiples) has their own room big enough for an isolette, a sink, a reclining rocking chair, a foldout couch, and a TV. But I barely registered all that; the only thing I noticed when we first went in was our tiny baby in his isolette, with tubes and wires attached all over his body. He had IVs for fluids, a temperature probe, a feeding tube, and a pulse ox. A CPAP machine was taped to his nose. It seemed like he was crying but he was barely audible; either way, he seemed distressed. He was not only incredibly tiny (our hand could cover half his body) but incredibly skinny, all sharp angles with no baby fat to speak of. We were allowed to hand-swaddle him: we gingerly placed our hands on his chest and legs. He was insubstantial.
Expectation: You will spend your time in the recovery room with your new baby, eating the free "Baby Bistro" meal, enjoying more baby cuddles, and continuing to learn how to breastfeed.
Reality: You will still have the fancy room service meal, and you will enjoy it because you are starving and because the reality of having given preterm birth still hasn't sunk in. Your baby will not be joining you for this meal, or for many more meals to come. You will go visit your baby again, and then you will settle in for a sleepless night. Sleepless, because a kind nurse will present you with a breast pump and show you how to use it, and say that you need to pump every three hours around the clock to establish your supply of breastmilk. At first, you produce nothing; when you finally do make your first drops of milk, the nurse sucks them up with a tiny syringe. They will give the drops of milk to your baby in the NICU. You also do not sleep well because in the middle of the night it hits you that you just had a preemie. Panicking, you Google preemies and learn that most preemies have a much higher chance of having physical and developmental delays in life. Even though most preemies now have a high survival rate, you spend the wee hours of the morning worrying and wondering if your baby will make it though the night; you're halfway expecting a nurse to come in any minute with a sad look on their face.
But Grunts did make it through the night. (Over time I learn that preemies are stronger than many people think, and Grunts has always been one of the strongest.) We spent most of the next day in the NICU. We learned that I had an infection that likely caused preterm labor, and that Grunts had the same infection (Streptococcus anginosus) in his lungs, along with a climbing white blood cell count. The bacteria normally live peacefully on human skin and the neonatologists had no idea how it crossed into my placenta. They started him on antibiotics to fight the infection. Grunts was now also receiving phototherapy for jaundice, so there were blue lights in his isolette and he was wearing a little blindfold. For the first time, I realized that I had no idea what color his eyes were.
Expectation: After a few days recovering at the hospital, you will pack your new tiny human into their carseat and take them home, where the bonding will continue. Your nursery will be all ready to go and everything in the house will already be baby-proofed.
Reality: On the third day you will leave the hospital without your baby. There is not a carseat in your car because you haven't ordered it yet. You will go to Target for emergency supplies and food, and it seems like ages since you have been in the real world, which now seems remarkably surreal. You will go home to a nursery that is not yet finished in a house that is not baby-proofed. You and your husband will talk about how bizarre it is that you now have a child and that said child is not at home with you. You will try to sleep but fail again because of the worry and the pumping.
On the fourth day, I finally got to hold Grunts. I sat in the big chair and they handed him to me, wires and tubes and all. He was so delicate and I was afraid I would break him (a feeling that lasted through his entire stay in the NICU). He was cute, in a way, but also very strange-looking, like an alien bug. I sang to him softly and cupped his tiny body in my hands. The moment was beautiful but short, and my husband didn't get to hold Grunts until the following day. (Preemies get overstimulated very easily). We both cried.
The first few weeks in the NICU quickly became an oddly comfortable routine. My husband had eight weeks of paternity leave, and he took the first two of them right after Grunts was born. We'd go to the NICU in the morning, hold Grunts for as long as he would tolerate it, and listen in on rounds (where the neonatal team would update us on Grunts' condition and let us ask questions). Then we'd hit the hospital cafeteria for lunch, possibly go on a walk, and be back in time for Grunts' afternoon care times. He had cares every three hours. At first the nurses did cares, and eventually we were allowed to take over: we'd take Grunts' temperature, change his super tiny diaper, and then sometimes hold him as he was eating. For a long time, he couldn't take any milk by mouth so he would get his feedings via gavage (a tube in his mouth/nose). We'd go home in the evening and then start all over the next day.
At first, the biggest worry was Grunts' infection; his white blood cell count kept increasing, and they started him on a second antibiotic. Other than that, the neonatal team kept talking about how well he was progressing - gaining weight, not having an abnormal amount of apnea or bradycardia (episodes of not breathing and low heart rate). A brain ultrasound revealed that he didn't have any abscesses, which was a huge relief, as his infection is known to cause them. After a week, it appeared that the antibiotics were finally working, and his white blood cell count started to decrease. After that Grunts progressed fairly well, for a preemie - but there were still a lot of stressors.
Expectation: You will spend the next couple of months in a sleepless daze, but hopefully a happy one. You are getting to know your baby and he is getting to know you. It will be one of the hardest things you've ever done, but you were somewhat mentally prepared for this.
Reality: You will spend the next couple of months getting more sleep than you expected after birth, but not a whole lot. It's hard to get to know your baby because you can only hold him for a few hours a day, and he sleeps most of the time. You were in no way prepared for this, mentally or emotionally.
After the initial crisis of the infection, we dealt with all of the other preemie issues. The above-mentioned apnea and bradycardia. The jaundice. The hearing and ROP screenings (Retinopathy of Prematurity). The slow transition to feeding by mouth, a long story that will probably be in a separate post. Usually, there are three criteria to preemies being released from the NICU, varying by location: they have to go so many days without any apnea or bradycardia episodes (in our case a week), they have to pass a room air challenge (going 30 minutes to an hour without supplemental oxygen and without desatting dangerously), and they have to be able to gain weight while eating by mouth. It's a lot for a baby to work on, especially a baby who isn't even supposed to be born yet.
All of that, and there was also an exhausting slew of people coming in and out of our room every day. Exhausting but necessary, and extremely supportive. We would have been lost without all of the professionals that helped our little family out on our journey: the neonatologists, nurses, lactation consultants, speech and motor therapists, and social workers. They say that being in the NICU is the best parenting class ever, and they're right; we got guided step-by-step tutorials on how to care for a baby, something most term parents don't get. Even now we get help from our local Early Intervention program; therapists stop by about once a week or so and I'm so grateful for their advice.
Finally Grunts got to the point where he was taking a bottle and attempting to breastfeed. Things moved very quickly from that point on, and the nurses sped up our discharge teaching. One weekend I spent two nights in his room during a snowstorm so that we could both practice feeding by mouth around the clock. Just a few days after that, the doctors said he needed surgery for an inguinal hernia. This surgery couldn't be performed at our hospital, so we were transferred to a bigger children's hospital in the state. That was one of the most stressful days in the NICU - his transfer team had to try 6 or 7 times to get an IV in for the ride, but failed, and my husband and I were holding each other and crying the whole time. Then my husband rode with him to the other hospital while my mother-in-law and I drove in my car. During the ride I was tense and worried. The surgery itself isn't particularly risky, but the thought of our tiny baby being put under was terrifying. When we arrived at the hospital and found Grunts' room, I was relieved to see that my husband and Grunts were already there, and Grunts was wiggling happily in his new crib. I was even more relieved when my husband announced that Grunts didn't have to have surgery after all - the new doctors gave him a once-over and shined a light from their cell phone on Grunts' junk, and saw immediately that it was just a hydrocele (fluid), not a hernia. I was happy, yes, but also angry. Because of insurance reasons we were stuck there now and couldn't be transferred back to our old NICU. Luckily, he passed his one-hour room air challenge and was discharged within two days. In the NICU you often don't get a lot of advanced warning before being discharged, and we only found out for sure the morning of.
And so, after 59 excruciatingly long days in the NICU, Grunts finally got to leave. We packed him up in his car seat, drove an hour to get home, and introduced him to our cats, who were disappointingly indifferent. We had a baby, and our baby was now home. Over the next few months we have faced other challenges, such as continuing supplemental oxygen and recent feeding difficulties due to reflux and bottle aversion. And I'm sure there will be more challenges to come. But we made it over the initial hurdles, and we made it through together, as a family.
Expectation: Your little family will learn and thrive together, through rainy days and sunny days, and you will live happily ever after.
Reality: Your little family will learn and thrive together, through rainy days and sunny days. There will be tough times, so stressful that one or all of you will cry and think you are never going to make it through. But no matter what you will adjust to life with a preemie, and you will make your own happily ever after.
Expectation: After birth, your baby will immediately be placed on your chest. You will spend some time in sheer awe of this life-changing event and the tiny human you just brought forth into the world. Eventually, this tiny human will start making its way towards your breast for their first meal. Later they will have their first bath and you will spend the rest of the day cuddling and bonding.
Reality: After birth, they will place the baby on your chest with a sheet of plastic underneath him. You will have less than a minute to spend in sheer awe of this life-changing event and the tiny human that you just brought forth into the world. Suddenly, they whisk him away from you, place him in an isolette, and intubate him. Then they take your baby out of the room and into the NICU. You're not sure exactly when he gets his first meal, but it will not come from your breast; it will be donor milk administered through a feeding tube. He won't get his first bath for quite awhile, and you won't get to hold your baby for three days.
My husband and I were allowed to go see Grunts that evening. Even though I was in fairly good shape, they wheeled me to the NICU in a wheelchair. We were lucky that our hospital had a NICU, and even luckier that it is a very nice one: each baby (or set of multiples) has their own room big enough for an isolette, a sink, a reclining rocking chair, a foldout couch, and a TV. But I barely registered all that; the only thing I noticed when we first went in was our tiny baby in his isolette, with tubes and wires attached all over his body. He had IVs for fluids, a temperature probe, a feeding tube, and a pulse ox. A CPAP machine was taped to his nose. It seemed like he was crying but he was barely audible; either way, he seemed distressed. He was not only incredibly tiny (our hand could cover half his body) but incredibly skinny, all sharp angles with no baby fat to speak of. We were allowed to hand-swaddle him: we gingerly placed our hands on his chest and legs. He was insubstantial.
Expectation: You will spend your time in the recovery room with your new baby, eating the free "Baby Bistro" meal, enjoying more baby cuddles, and continuing to learn how to breastfeed.
Reality: You will still have the fancy room service meal, and you will enjoy it because you are starving and because the reality of having given preterm birth still hasn't sunk in. Your baby will not be joining you for this meal, or for many more meals to come. You will go visit your baby again, and then you will settle in for a sleepless night. Sleepless, because a kind nurse will present you with a breast pump and show you how to use it, and say that you need to pump every three hours around the clock to establish your supply of breastmilk. At first, you produce nothing; when you finally do make your first drops of milk, the nurse sucks them up with a tiny syringe. They will give the drops of milk to your baby in the NICU. You also do not sleep well because in the middle of the night it hits you that you just had a preemie. Panicking, you Google preemies and learn that most preemies have a much higher chance of having physical and developmental delays in life. Even though most preemies now have a high survival rate, you spend the wee hours of the morning worrying and wondering if your baby will make it though the night; you're halfway expecting a nurse to come in any minute with a sad look on their face.
But Grunts did make it through the night. (Over time I learn that preemies are stronger than many people think, and Grunts has always been one of the strongest.) We spent most of the next day in the NICU. We learned that I had an infection that likely caused preterm labor, and that Grunts had the same infection (Streptococcus anginosus) in his lungs, along with a climbing white blood cell count. The bacteria normally live peacefully on human skin and the neonatologists had no idea how it crossed into my placenta. They started him on antibiotics to fight the infection. Grunts was now also receiving phototherapy for jaundice, so there were blue lights in his isolette and he was wearing a little blindfold. For the first time, I realized that I had no idea what color his eyes were.
Expectation: After a few days recovering at the hospital, you will pack your new tiny human into their carseat and take them home, where the bonding will continue. Your nursery will be all ready to go and everything in the house will already be baby-proofed.
Reality: On the third day you will leave the hospital without your baby. There is not a carseat in your car because you haven't ordered it yet. You will go to Target for emergency supplies and food, and it seems like ages since you have been in the real world, which now seems remarkably surreal. You will go home to a nursery that is not yet finished in a house that is not baby-proofed. You and your husband will talk about how bizarre it is that you now have a child and that said child is not at home with you. You will try to sleep but fail again because of the worry and the pumping.
On the fourth day, I finally got to hold Grunts. I sat in the big chair and they handed him to me, wires and tubes and all. He was so delicate and I was afraid I would break him (a feeling that lasted through his entire stay in the NICU). He was cute, in a way, but also very strange-looking, like an alien bug. I sang to him softly and cupped his tiny body in my hands. The moment was beautiful but short, and my husband didn't get to hold Grunts until the following day. (Preemies get overstimulated very easily). We both cried.
The first few weeks in the NICU quickly became an oddly comfortable routine. My husband had eight weeks of paternity leave, and he took the first two of them right after Grunts was born. We'd go to the NICU in the morning, hold Grunts for as long as he would tolerate it, and listen in on rounds (where the neonatal team would update us on Grunts' condition and let us ask questions). Then we'd hit the hospital cafeteria for lunch, possibly go on a walk, and be back in time for Grunts' afternoon care times. He had cares every three hours. At first the nurses did cares, and eventually we were allowed to take over: we'd take Grunts' temperature, change his super tiny diaper, and then sometimes hold him as he was eating. For a long time, he couldn't take any milk by mouth so he would get his feedings via gavage (a tube in his mouth/nose). We'd go home in the evening and then start all over the next day.
At first, the biggest worry was Grunts' infection; his white blood cell count kept increasing, and they started him on a second antibiotic. Other than that, the neonatal team kept talking about how well he was progressing - gaining weight, not having an abnormal amount of apnea or bradycardia (episodes of not breathing and low heart rate). A brain ultrasound revealed that he didn't have any abscesses, which was a huge relief, as his infection is known to cause them. After a week, it appeared that the antibiotics were finally working, and his white blood cell count started to decrease. After that Grunts progressed fairly well, for a preemie - but there were still a lot of stressors.
Expectation: You will spend the next couple of months in a sleepless daze, but hopefully a happy one. You are getting to know your baby and he is getting to know you. It will be one of the hardest things you've ever done, but you were somewhat mentally prepared for this.
Reality: You will spend the next couple of months getting more sleep than you expected after birth, but not a whole lot. It's hard to get to know your baby because you can only hold him for a few hours a day, and he sleeps most of the time. You were in no way prepared for this, mentally or emotionally.
After the initial crisis of the infection, we dealt with all of the other preemie issues. The above-mentioned apnea and bradycardia. The jaundice. The hearing and ROP screenings (Retinopathy of Prematurity). The slow transition to feeding by mouth, a long story that will probably be in a separate post. Usually, there are three criteria to preemies being released from the NICU, varying by location: they have to go so many days without any apnea or bradycardia episodes (in our case a week), they have to pass a room air challenge (going 30 minutes to an hour without supplemental oxygen and without desatting dangerously), and they have to be able to gain weight while eating by mouth. It's a lot for a baby to work on, especially a baby who isn't even supposed to be born yet.
All of that, and there was also an exhausting slew of people coming in and out of our room every day. Exhausting but necessary, and extremely supportive. We would have been lost without all of the professionals that helped our little family out on our journey: the neonatologists, nurses, lactation consultants, speech and motor therapists, and social workers. They say that being in the NICU is the best parenting class ever, and they're right; we got guided step-by-step tutorials on how to care for a baby, something most term parents don't get. Even now we get help from our local Early Intervention program; therapists stop by about once a week or so and I'm so grateful for their advice.
Finally Grunts got to the point where he was taking a bottle and attempting to breastfeed. Things moved very quickly from that point on, and the nurses sped up our discharge teaching. One weekend I spent two nights in his room during a snowstorm so that we could both practice feeding by mouth around the clock. Just a few days after that, the doctors said he needed surgery for an inguinal hernia. This surgery couldn't be performed at our hospital, so we were transferred to a bigger children's hospital in the state. That was one of the most stressful days in the NICU - his transfer team had to try 6 or 7 times to get an IV in for the ride, but failed, and my husband and I were holding each other and crying the whole time. Then my husband rode with him to the other hospital while my mother-in-law and I drove in my car. During the ride I was tense and worried. The surgery itself isn't particularly risky, but the thought of our tiny baby being put under was terrifying. When we arrived at the hospital and found Grunts' room, I was relieved to see that my husband and Grunts were already there, and Grunts was wiggling happily in his new crib. I was even more relieved when my husband announced that Grunts didn't have to have surgery after all - the new doctors gave him a once-over and shined a light from their cell phone on Grunts' junk, and saw immediately that it was just a hydrocele (fluid), not a hernia. I was happy, yes, but also angry. Because of insurance reasons we were stuck there now and couldn't be transferred back to our old NICU. Luckily, he passed his one-hour room air challenge and was discharged within two days. In the NICU you often don't get a lot of advanced warning before being discharged, and we only found out for sure the morning of.
And so, after 59 excruciatingly long days in the NICU, Grunts finally got to leave. We packed him up in his car seat, drove an hour to get home, and introduced him to our cats, who were disappointingly indifferent. We had a baby, and our baby was now home. Over the next few months we have faced other challenges, such as continuing supplemental oxygen and recent feeding difficulties due to reflux and bottle aversion. And I'm sure there will be more challenges to come. But we made it over the initial hurdles, and we made it through together, as a family.
Expectation: Your little family will learn and thrive together, through rainy days and sunny days, and you will live happily ever after.
Reality: Your little family will learn and thrive together, through rainy days and sunny days. There will be tough times, so stressful that one or all of you will cry and think you are never going to make it through. But no matter what you will adjust to life with a preemie, and you will make your own happily ever after.
Tuesday, April 24, 2018
A Series of Unfortunate (but Ultimately Fortunate) Events, Part II
And so my second pregnancy began. General pregnancy and delivery grossness to follow.
After the blighted ovum experience, I was no less excited but a hundred times more anxious for this pregnancy. I said goodbye to my old midwives (who delivered at a hospital that didn't take our insurance) and hello to a new set, so it was a new beginning in many ways. They put me on progesterone right away for the entirety of my first trimester. Progesterone supplements are supposed to help prevent miscarriages (although recent studies have shown this probably isn't true). Either way, it was a bit comforting. But the progesterone itself was not fun. First of all, it was a suppository which some evil genius decided to make a bright red color. The waxy coating is not absorbed by the body, so the first time it came out in the toilet I freaked out. It looked exactly like a little red blob of tissue. Plus, there was a lot of bright red discharge that looked an awful lot like blood. Even after I caught on, I still had a small panic attack each time and wondered if it was the pill or if I was having a miscarriage. I had to take these little beauties daily for 12 weeks, and there were other side effects as well. One was ACTUAL bleeding, yay. The exact thing a woman needs to see routinely during her first trimester. Another side effect was depression. It was never that serious, but I did feel very down. I had many blah days where nothing seemed interesting and I just wanted to stay in bed. My husband helped a great deal on these days, thinking of fun things to do and getting me out of the house.
But something must have clicked, because when I went in for an ultrasound (extra early this time, just in case) we saw a fetal pole. It was as if my body was saying "Sorry for last time! I was just overexcited! See, here, I can do a good job! I made this tiny poledancer! See?!!" I let myself breathe just a small sigh of relief. And then, at the end of my first trimester, let out a little more air. I made it through the hardest part, I told myself. Bad things could still happen, but the chances were slim. I had more ultrasounds and each time the baby looked healthy. I decided to call it Niblet, a reference to my favorite show, Buffy the Vampire Slayer.
The second trimester was comparatively a breeze. The only awkward part was when I put on more weight but didn't quite look pregnant yet, just like I'd eaten a few too many donuts and then stuffed some extra donuts in my waistband to save for later. The best part was pregnancy leggings, which I still wear to this day, because real pants are for people who don't spend most of the day trying to sleep when they're not constantly feeding and holding a tiny tyrant. I was looking forward to my third trimester, mostly so I would finally look really pregnant and have something to show for all my effort. I was not looking forward to the back pain and the swelling feet and the scarier, more serious complications.
It turns out I didn't have to worry about any of those things.
I had one false alarm near the end of my second trimester; one weekend it seemed like I had an excessive amount of fluid in my panties, so I called the after hours nurse at the clinic and she said to be on the safe side I should go into Labor and Delivery at the hospital to have it checked out. It turned out to be nothing, and as I cried in embarrassment the midwife said 1) it was totally normal to have watery discharge at this point, and 2) not to be embarrassed, as it was better to be safe than sorry. She said that they deal with false alarms all the time.
Just a few weeks later, barely in my third trimester, it was a Sunday afternoon and I was having another blah day. My husband suggested that we walk to the grocery store about a mile away, buy a few ingredients, and make something special for dinner together. This lifted my spirits, although while we were walking I noticed that my pelvis hurt (although this wasn't entirely unusual). We came home and made a fancy Italian dinner. I'll never forget that meal, because it was our last meal at home before Grunts was born. After we went to bed, I woke up in the middle of the night with what I thought were gas pains. It was only mildly uncomfortable and I kept thinking that the pain would go away if only I could just pass some gas. (Now that I'm a parent, we call them toots, poots, and other embarrassing things.) But by 5am or so they hadn't gone away. I wasn't timing them, but I knew they were happening regularly enough to be worried. After some hemming and hawing, I finally called the after hours number, and the on-call nurse told me the same thing as last time: it was probably nothing, but to be sure I should get it checked out at the hospital.
So at 6:30am on a Monday we found ourselves once again in the Labor and Delivery ward. This time I was sure it was nothing. I was telling this to the hospital staff as they hooked me up to the contraction monitor, so it was actually a surprise when they said I was indeed having mild contractions. My surprise (and worry) grew when the midwife examined me and declared that my cervix was 50% effaced. Before I got too panicky the midwife reassured me that it wasn't that unusual and that I could still be weeks away from labor. They gave me magnesium sulfate to slow the contractions down, and slow they did, for awhile. I also got the first steroid shot for baby's lungs in case I delivered early. My husband stayed with me instead of going to work, and I ate some breakfast on a tray. At one point mid-morning he asked "if the baby were to come today, what should we name it?" We had decided not to find out the sex of the baby, and we still hadn't chosen our final names. So we chose two of our favorites, one for a boy and one for a girl. Then we laughed about it; surely we wouldn't be naming our baby so soon!
The contractions eventually picked up again and became more intense. The midwife came again to check my cervix; I was only 1.5 cm dilated, but eventually she left and came back with a doctor, who briskly informed me that I was indeed going into preterm labor. They were going to try to keep me until at least the next morning, when they could give me the second shot of steroids. I got another medicine to help slow contractions, but it seemed that they were getting worse, if anything. I was wheeled into the birthing center. I barely registered that I was given an extra large deluxe room, the ones that had been coveted during my childbirth class's hospital tour.
As my contractions got closer together and more painful, a neonatologist from the NICU came to visit and tell me what to expect after baby was born. After that my husband went home to pack a bag and grab some lunch; we still thought delivery was some time away. Of course, in an ironic twist, things started happening quickly after he left. The contractions were becoming so painful that my groaning had escalated into screaming. I asked for an epidural but it was too late for that; instead, I settled for a shot of Fentanyl, which helped for the briefest of moments. (Somewhere in between I also vomited my guts out.) Finally able to catch my breath, I lay on my side to try to rest a bit. Not five minutes later I felt a giant puddle coming out of me; my water had broken. A nurse helped me to the bathroom so I could clean up, and I suddenly had a strong urge to both poop and pee, and was painfully unable to do either. The screaming in the bathroom transitioned to screaming back in my bed. My mother-in-law, who had come to stay with me, called my husband and then remembered that he'd said his phone was dying. (I had a brief bout of anxiety when I pictured my husband getting into a car accident on the way back to the hospital.) But he arrived when I was in the most painful throes of labor and got to witness me screaming lovely things like "I CAN'T DO THIS," "I FEEL LIKE I'M DYING," and "FUDDDDGGGE" (only I didn't say fudge).
The doctor came in, as well as the neonatal team with their isolette. I wasn't quite dilated completely but eventually I couldn't take it anymore; I asked the doctor if I could start pushing, and he said yes. Despite the indescribable pain of labor, the actual delivery was short and...well, still incredibly painful. But after only three pushes, at 6:01pm Grunts was delivered. Someone announced the requisite "it's a boy!" Grunts was briefly put on my chest, a plastic sheet underneath him, and I had just enough time to confirm his name with my husband when the baby was whisked away to his isolette. Even though the second shot of Fentanyl had worn off quickly, I felt disoriented by the sheer enormity of the event. I turned to the nurses, and my husband, and back again, to ask repeatedly if Grunts was okay. They kept assuring me that he was, but I couldn't see him through the crowd of people surrounding his isolette.
Finally, after the placenta was delivered and my tears were stitched up, my husband and his father (who had arrived shortly before delivery) followed Grunts to the NICU while I stayed with my mother-in-law to recover. I called my own parents to tell them the news, and I felt happy, or at least exhilarated, for awhile; the sudden lack of pain, plus the small but hopeful cry of Grunts as he lay on my chest, had buoyed my spirits.
It wasn't until later, in the recovery room, that it really hit me: I had gone into preterm labor. I had delivered a child at 29 weeks and 2 days. Grunts was in the NICU. I was now the mother of a preemie.
To Be Continued...
Share your preterm labor and delivery stories in the comments!
After the blighted ovum experience, I was no less excited but a hundred times more anxious for this pregnancy. I said goodbye to my old midwives (who delivered at a hospital that didn't take our insurance) and hello to a new set, so it was a new beginning in many ways. They put me on progesterone right away for the entirety of my first trimester. Progesterone supplements are supposed to help prevent miscarriages (although recent studies have shown this probably isn't true). Either way, it was a bit comforting. But the progesterone itself was not fun. First of all, it was a suppository which some evil genius decided to make a bright red color. The waxy coating is not absorbed by the body, so the first time it came out in the toilet I freaked out. It looked exactly like a little red blob of tissue. Plus, there was a lot of bright red discharge that looked an awful lot like blood. Even after I caught on, I still had a small panic attack each time and wondered if it was the pill or if I was having a miscarriage. I had to take these little beauties daily for 12 weeks, and there were other side effects as well. One was ACTUAL bleeding, yay. The exact thing a woman needs to see routinely during her first trimester. Another side effect was depression. It was never that serious, but I did feel very down. I had many blah days where nothing seemed interesting and I just wanted to stay in bed. My husband helped a great deal on these days, thinking of fun things to do and getting me out of the house.
But something must have clicked, because when I went in for an ultrasound (extra early this time, just in case) we saw a fetal pole. It was as if my body was saying "Sorry for last time! I was just overexcited! See, here, I can do a good job! I made this tiny poledancer! See?!!" I let myself breathe just a small sigh of relief. And then, at the end of my first trimester, let out a little more air. I made it through the hardest part, I told myself. Bad things could still happen, but the chances were slim. I had more ultrasounds and each time the baby looked healthy. I decided to call it Niblet, a reference to my favorite show, Buffy the Vampire Slayer.
The second trimester was comparatively a breeze. The only awkward part was when I put on more weight but didn't quite look pregnant yet, just like I'd eaten a few too many donuts and then stuffed some extra donuts in my waistband to save for later. The best part was pregnancy leggings, which I still wear to this day, because real pants are for people who don't spend most of the day trying to sleep when they're not constantly feeding and holding a tiny tyrant. I was looking forward to my third trimester, mostly so I would finally look really pregnant and have something to show for all my effort. I was not looking forward to the back pain and the swelling feet and the scarier, more serious complications.
It turns out I didn't have to worry about any of those things.
I had one false alarm near the end of my second trimester; one weekend it seemed like I had an excessive amount of fluid in my panties, so I called the after hours nurse at the clinic and she said to be on the safe side I should go into Labor and Delivery at the hospital to have it checked out. It turned out to be nothing, and as I cried in embarrassment the midwife said 1) it was totally normal to have watery discharge at this point, and 2) not to be embarrassed, as it was better to be safe than sorry. She said that they deal with false alarms all the time.
Just a few weeks later, barely in my third trimester, it was a Sunday afternoon and I was having another blah day. My husband suggested that we walk to the grocery store about a mile away, buy a few ingredients, and make something special for dinner together. This lifted my spirits, although while we were walking I noticed that my pelvis hurt (although this wasn't entirely unusual). We came home and made a fancy Italian dinner. I'll never forget that meal, because it was our last meal at home before Grunts was born. After we went to bed, I woke up in the middle of the night with what I thought were gas pains. It was only mildly uncomfortable and I kept thinking that the pain would go away if only I could just pass some gas. (Now that I'm a parent, we call them toots, poots, and other embarrassing things.) But by 5am or so they hadn't gone away. I wasn't timing them, but I knew they were happening regularly enough to be worried. After some hemming and hawing, I finally called the after hours number, and the on-call nurse told me the same thing as last time: it was probably nothing, but to be sure I should get it checked out at the hospital.
So at 6:30am on a Monday we found ourselves once again in the Labor and Delivery ward. This time I was sure it was nothing. I was telling this to the hospital staff as they hooked me up to the contraction monitor, so it was actually a surprise when they said I was indeed having mild contractions. My surprise (and worry) grew when the midwife examined me and declared that my cervix was 50% effaced. Before I got too panicky the midwife reassured me that it wasn't that unusual and that I could still be weeks away from labor. They gave me magnesium sulfate to slow the contractions down, and slow they did, for awhile. I also got the first steroid shot for baby's lungs in case I delivered early. My husband stayed with me instead of going to work, and I ate some breakfast on a tray. At one point mid-morning he asked "if the baby were to come today, what should we name it?" We had decided not to find out the sex of the baby, and we still hadn't chosen our final names. So we chose two of our favorites, one for a boy and one for a girl. Then we laughed about it; surely we wouldn't be naming our baby so soon!
The contractions eventually picked up again and became more intense. The midwife came again to check my cervix; I was only 1.5 cm dilated, but eventually she left and came back with a doctor, who briskly informed me that I was indeed going into preterm labor. They were going to try to keep me until at least the next morning, when they could give me the second shot of steroids. I got another medicine to help slow contractions, but it seemed that they were getting worse, if anything. I was wheeled into the birthing center. I barely registered that I was given an extra large deluxe room, the ones that had been coveted during my childbirth class's hospital tour.
As my contractions got closer together and more painful, a neonatologist from the NICU came to visit and tell me what to expect after baby was born. After that my husband went home to pack a bag and grab some lunch; we still thought delivery was some time away. Of course, in an ironic twist, things started happening quickly after he left. The contractions were becoming so painful that my groaning had escalated into screaming. I asked for an epidural but it was too late for that; instead, I settled for a shot of Fentanyl, which helped for the briefest of moments. (Somewhere in between I also vomited my guts out.) Finally able to catch my breath, I lay on my side to try to rest a bit. Not five minutes later I felt a giant puddle coming out of me; my water had broken. A nurse helped me to the bathroom so I could clean up, and I suddenly had a strong urge to both poop and pee, and was painfully unable to do either. The screaming in the bathroom transitioned to screaming back in my bed. My mother-in-law, who had come to stay with me, called my husband and then remembered that he'd said his phone was dying. (I had a brief bout of anxiety when I pictured my husband getting into a car accident on the way back to the hospital.) But he arrived when I was in the most painful throes of labor and got to witness me screaming lovely things like "I CAN'T DO THIS," "I FEEL LIKE I'M DYING," and "FUDDDDGGGE" (only I didn't say fudge).
The doctor came in, as well as the neonatal team with their isolette. I wasn't quite dilated completely but eventually I couldn't take it anymore; I asked the doctor if I could start pushing, and he said yes. Despite the indescribable pain of labor, the actual delivery was short and...well, still incredibly painful. But after only three pushes, at 6:01pm Grunts was delivered. Someone announced the requisite "it's a boy!" Grunts was briefly put on my chest, a plastic sheet underneath him, and I had just enough time to confirm his name with my husband when the baby was whisked away to his isolette. Even though the second shot of Fentanyl had worn off quickly, I felt disoriented by the sheer enormity of the event. I turned to the nurses, and my husband, and back again, to ask repeatedly if Grunts was okay. They kept assuring me that he was, but I couldn't see him through the crowd of people surrounding his isolette.
Finally, after the placenta was delivered and my tears were stitched up, my husband and his father (who had arrived shortly before delivery) followed Grunts to the NICU while I stayed with my mother-in-law to recover. I called my own parents to tell them the news, and I felt happy, or at least exhilarated, for awhile; the sudden lack of pain, plus the small but hopeful cry of Grunts as he lay on my chest, had buoyed my spirits.
It wasn't until later, in the recovery room, that it really hit me: I had gone into preterm labor. I had delivered a child at 29 weeks and 2 days. Grunts was in the NICU. I was now the mother of a preemie.
To Be Continued...
Share your preterm labor and delivery stories in the comments!
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