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The Vine: March 20, 2013

Submitted by on March 20, 2013 – 9:47 AM53 Comments

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I am 38 and have two gorgeous sons, the eldest of which is three and pretty much the most awesome kid ever to have graced the planet (not that I'm biased). My younger son was born thirteen weeks prematurely, and is now almost five months old (or about two months old corrected). He has been home from hospital for about six weeks. He is also, needless to say, extraordinary — we call him Superman.

In my non-parenting life I work full-time in a fairly responsible and prestigious job (I know how that sounds, but I don't know how to put it otherwise.) I have been off work since I began having pregnancy complications, and I will probably continue to be off until summer. My baby is perfectly healthy except for his lungs; he was ventilated for two weeks and as a result now has something called chronic lung disease, or bronchopulmonary dysplasia (BPD). He is on supplementary oxygen for now, and probably will be at least until the cold and flu season is over. As he gets bigger his lungs will grow and become stronger, and as an adult he will most likely be perfectly normal but with a tendency toward chest infections.

So my preschooler is still in full-time preschool, partly because he adores it and partly because I can't look after him properly with the baby. Because Charlie (the baby) is still so small, colds and coughs will, for him, most likely require hospitalisation. This puts a major damper on socialising etc. The doctors told me to "live my life as normal," but also said to avoid small children, crowded places, shopping malls, supermarkets…you get the idea. I find these pieces of advice incompatible, but whatever.

So far Charlie has not yet been ill and is growing at an impressive rate. Jake, the older boy, is a great big brother and has adapted to the situation like a pro. My husband is wonderful, though insanely busy with work; he is home on time but generally starts working after the boys are in bed and finishes around 11 PM.

So…I'm lonely. And stressed. I want to go out but a) health concerns and b) my son's implacable hatred of his pram preclude that (we don't have a car). My friends are either working or have children of their own, and therefore can't really be around Charlie. My family live in another country, and my husband's family, who are wonderful, are not nearby. I spend my days, after dropping Jake off, sitting at home watching bad daytime television and looking after Charlie. He is lovely but, at eight weeks (corrected), still very small and young (he is not yet properly smiling. I'm trying not to panic about that. Or about all the possible things that may be lying in wait for us as he gets older, all of which are unlikely but still OUT THERE: cerebral palsy, learning difficulties, ADHD…nothing feeds paranoia like being home alone all the time). My only other outings are to the hospital for various appointments, which is not particularly fun or relaxing.

I'm trying to stay normal and healthy and everything, but it's an uphill battle. I guess what I'm asking for is reassurance that I'm normal and will come out the other side and for any tips on how to make the next six months or so more bearable. I'm sorry this is so long and blibbering. Thanks for anything you can tell me. And if what you tell me is "suck it up, buttercup," that would be okay too.

Oh, the Joys of Parenting

Dear Joy,

What you've just described — that a case of emetophobia so classic that I think there's a woodcut of me in the DSM-IV — is one of the chief reasons I won't be having little ones of my own. Every time Master Stupidhead takes off at top speed anywhere near a wet leaf, I can barely watch. And he's not even my kid. "Helicopter parent," forget it; I'd be that dome from the Simpsons movie. "Get off me, Ma, it's time for college." "No."

But with all that said: yes, of course this is normal. You all spent the first weeks of Charlie's life in the NICU, and no matter how well a hospital or neo-natal team handles the transition home, it's really scary, I'm guessing, after a month (or longer) of tubes and breathing machines and someone with medical training nearby 24/7, to be handed your bundle and wished good luck. This is hard when it's grown-ups. Then you go home and every other story on the Yahoo! homepage is about the hockey-enforcer MRSA that's coming to kill us all, so in my childless opinion, "long and blibbering" is appropriate.

On top of that, you nailed it with this: "Nothing feeds paranoia like being home alone all the time." Because you know what you can do when you're not on a walk, or at a mommy group, or somewhere you might otherwise be if Charlie weren't quite so immunologically frail right now? You can look on the internet and drive yourself fucking crazy. And it feels like you really can't change the situation: your husband works, you shouldn't expose Charlie to anything, and he won't get in the stroller.

I'm going to hand this off to the readers shortly, because there's no substitute for firsthand intel and I have zipperooni, but: pick one aspect of this situation to change, or shift, somehow, if for no other reason than to let yourself feel active and not trapped. I am absolutely not going to contradict the advice of Charlie's doctors; I am going to point out that, with another kid in full-time preschool, y'all are already getting exposed to the full gamut of cooties. Sooooo it might not be out of bounds to have a friend or two over, now and then, understanding ones who don't mind enjoying the complimentary Purell shvitz at your place. Or to sit your husband and doctor down and say that you're climbing the walls, and can everyone work together on a solution, be it giving you a night off every week to go talk to a counselor and vent, or work on a gradual strategy to introduce Charlie to the world and its many germs, or whatever. Or to begin putting Charlie in the pram for a few minutes, and then a few minutes more, and understand that babies sometimes hate shit and cry about it and it doesn't make you a bad mom, obviously, because your three-year-old is great and that's your doing. Or to find a parents' group near you that's focused on the concerns of "corrected age" babies, so you don't have to feel sad that Charlie isn't "already" doing whatever awesome thing, which he will do when he's ready, and not for nothing but parents lie like rugs about that stuff all the time. "Ruby's on solids — and sonnets!" Oh, excuse us.

tl;dr version: Pick a thing to change about the situation, make a plan, and try not to feel guilty about it. This period is very isolating and anxious for you, and it doesn't make you weak or selfish to want out from under it. It makes you a good parent who's able to recognize that she's overwhelmed, and look for solutions. And it sounds like your husband is on board with Team Joy; he's just busy. You can make it work.

Maybe these suggestions aren't practicable, and like I said, what do I know, but even if Superman is like, "Please observe the cape: I don't do strollers," this won't last forever. You're doing great.

Readers: Joy's about had it. Throw her a line.

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  • patricia says:

    Seconding everything that Sars said. From the bit about already getting exposed to cooties bc of the older kid in preschool (lived that one), to the bit about he'll likely get over the stroller hate if you can accustom him to it, to the bit about working with Hubs and doctors to find SOMETHNG that works. Seriously, it's all FAB advice. I don't have a kid with compromised health, and I send my sympathy and hugs, but it doesn't sound like it minimizes your concerns or fails to address Superman's issues to do all of those things Sars suggested.

    One specific suggestion- have you tried taking the babe for walks in a chest carrier? He may like that better than the stroller. Plus, less worry about temps (if you live somewhere cold) since he's snuggled up against you. Also, maybe less chance for infection from others, since you can kind of control personal space for him a little better. You might not be able to go many places, but leaving the four walls of your house sound like they might do you a ton of good. I can plug the Ergo carrier- loved mine.

    Another specific suggestion may be to hire some help if you can swing it. A sitter who comes to you a few hours a week might make a huge difference. You can screen for someone who's worked with kids who are health-compromised.

  • JC says:

    If there's anything I learned from my sister and her two kids, it's that (a) there's a precise timetable for EVERY SINGLE developmental thing, (b) almost no kid adheres to them, and (c) doctors will bring it up anyway, for extra worrying fuel. So try not to sweat it too much. My sister and I now have a running joke about how my oldest niece missed the two-week window in which kids are supposed to move from simple subject-verb sentences to using occasional prepositions, e.g., "Oh God, she missed the preposition window! No college for her!"

  • Sarah D. Bunting says:

    High five @patricia for mentioning two things I meant to, but forgot, because if it's not written down, I…dammit, why did I come in here?

  • Megan says:

    Dude, I hear you. My daughter, who is now 6, was born 9 weeks premature and spent her first 23 days in the NICU. We were lucky that she didn't have any lingering problems being so premature, but she was tiny (2 lbs 15 oz at birth). When she finally came home she was barely above 4 lbs. and it was February – prime cold/cough and RSV season. So like you, I was basically trapped in the house with her full time, with the added bonus that my husband traveled for his job Monday – Friday. So I was stuck at home with a tiny baby all by myself for days on end. The only time I left the house was for doc appts or when my sister came over to watch my child so I could go grocery shopping. (woo hoo!) Anyway, the point of all this is to tell you that it did get better and spring did come and we could leave the house without me completely panicking.

    I think Sars' advice is right on, and that it will be okay to invite a friend over once in a while if that helps you get in some adult conversation. Or maybe work something out with your husband where he takes one night a week off from working so you can go have a drink or see a movie or something with your friends. I realize I didn't add much advice here, but really just wanted to let you know that I've been there, and offer encouragement that you will get through it.

  • Erin W says:

    No kids here either, but like Sarah, it jumped out at me that the baby is not supposed to be around small children, but you have another small child who is, presumably, as much of a germ factory as any other small child. Would introducing him to another kid really hurt? Some straight talk from the doc is needed.

    Also, this may be a total crackpot suggestion for an infant, but what about a surgical mask? I see people wearing them out and about; do they make teeny-tiny ones?

  • Abby says:

    No kids here, but just wanted to throw out there that good friends *REALLY* won't mind whatever sanitary precautions make you more comfortable; had a good friend get a bone marrow transplant recently, and we were all Purel-ing and wearing hospital masks every time we went over there for months — it was how we could see her and bring the fun to her, since she couldn't leave her house except for doctor's appts — and really, no one minded.

  • Ami says:

    Totally seconding the recommendation for a carrier or sling if a stroller is not working out for you. There's about a zillion different kinds out there – my daughters both looooooved the Sleepy Wrap as small babies, which (since it's stretchy) you can tie on and then leave on and just pop the baby in and out.

  • Krissa says:

    Also no kids here, but the idea of a wrap/chest carrier (ie, baby-wearing, the newest fashion craze) was the first thing that came to my mind – even just to take a walk outside of the walls of your house. Plus, snuggle-baby-mama-time is supposed to do wonderful magical things for tiny sweet little premie babies and their development. Again, I don't have kids, but it could be worth a shot.

  • nicole says:

    First, the stroller thing – like someone else said, have you tried a carrier or a sling? Kids are weird about what they like and when they like them. One of mine LOVED the swing, the other acted we employing advanced CIA interrogation techniques. One loved the Bjorn, the other was meh about it. Also, if you can afford it, can you get a different model? Or try a different position, blankets etc. I would also ask his doctor exactly what is meant by "avoid" – extended periods of time, direct contact, just being there, etc. It is like bed rest – it means something different in every case.

    I understand the mind numbing boredom and stress – I was on maternity leave with a colicky baby and I about skipped back to work. If you have the ability, would working part-time from home be an option? If you cannot actually hang out with people, what about setting up Skype dates that you can schedule around the little guy's naptime? What taking up a hobby or project that you would not have been able to do otherwise?

    It is perfectly normal to worry about everything that can go wrong. When I started to do that with my two pregnancies (both were not without challenges – nothing like yours, though), I made myself think of one good thing for every bad thing. We had some lung issues and they resolved quite nicely by age 3. There is a light at the end of a long tunnel.

  • Deanna says:

    Big hugs for you. That isolated feeling is so hard. That said–get thee to a baby carrier, and stat. Someone above mentioned the Ergo and I will absolutely second that one; you can buy an infant insert to make it compatible for your wee guy.

    Get some real talk from the doc: what's okay? What isn't? Make the doctor describe specific okay/not okay scenarios. If your doctor is okay with you going on errands with him in the carrier, they have little hoods you can pull up when you enter a store to keep well-meaning-but-germy hands away. If your doctor isn't okay with errands but okays the idea of walks, walk that child everywhere. It's healthy for you and happy for him, and all those extra cuddles will release endorphins that make the stress of the remainder of the day be more manageable.

  • Clobbered says:

    Okay so there's two different issues – the germ exposure and the lack of mobility. The germs – well I am not a doctor and I don't play one on the Internet, so no comment, though like others I would guess it's not that bad if the doctor has not suggested separation from the preschooler, which as others point out is probably a germ factory.

    But you have to get out if the house. Depending in where you live, you can go for a walk somewhere different, or if the weather is bad, try an art gallery – whatever word you need to describe an art gallery on a weekday morning, "overcrowded" is not it. Hell, pick a modern art gallery, babies like those.

    So. Chest carrier as mentioned is good if we have good head control. The baby can't weigh that much, so maybe carrying him with a sling as backup (if you are worried about dropping him). will work (though you have to be careful with slings with really tiny babies that they don't disappear in there). Not sure exactly what you mean by a pram, if it is the one where the baby lies down totally flat, maybe that is what he objects to so try an infant carseat type pram instead (or vice versa). But if you can get the sling/chest carrier to work for you that will give you more mobility overall as you can then go to places a stroller can't.

    Go to a movie. Some places have mother and baby morning showings. Yes it is public but not crowded, so as long as nobody is near enough to cough over the baby I can't imagine what the problem is if you wash your hands thoroughly before washing the baby.

    If you are an extrovert and need people dammit, try and arrange going to one of those places with a friend with young kids. As long as there is no direct contact with them, surely that is ok.

    Try and do some work! Get your brain back into gear. Fight the urge of daytime TV, it will rot your brain. When I was in a similar situation I actually killed my cable – anything is better than that.

    Most of all, hang in there. The first few baby months are hard even without the extra challenges you have had to deal with. It gets better. And better. And better. Good luck.

  • Piglet says:

    I'm a sahm but not by choice so I totally get the frustration. When you can't escape (or just need to vent) i find the Internet very therapeutic for feeling like I have some connection to the outside world. Mumsnet.com is my fave since there are discussions on way more than just kids.

  • Katherine says:

    Joy, you have a million units of sympathy from me. My two-and-a-half-year-old recently spent the weekend in the hospital, which is NOTHING compared to what you went through, of course, but the residual terror/horror of the whole experience has lingered with me ever since, and it's awful. I'm seconding the idea that you need to get out somewhere, where there are grownups and it's the real world. If the doctor said for you to live life normally, then try to do so as much as you can. Even just a walk around the block one day will help, but going to a favorite bookstore or coffeeshop will help even more. The sling or carrier is a great idea.

    Or, find a babysitter you like/trust and go somewhere with grownups and friends. But above all, take care of yourself, too. The first few months of parenting are hard, and with this added fear… I think you're very brave. Hang in there!

  • Banana Bunny says:

    You mention family and friends are not nearby. But is there one or two key people you could schedule a weekly skype chat with? You could "have a visit" for an hour or so, hands free (because your hands are full of baby), so you can stay engaged in a conversation longer than a traditional telephone call. Set the computer on the kitchen counter or other central location in your home, so if you have to change a diaper mid-conversation you're still in shouting distance.

    Similarly, I think you should schedule one night a week to go out without kids or husband. Husband will likely need to push his work around to accomodate this, but if it's planned in advance, it should be doable. Find a class or shop or just go to the library. You might be able to make some friends local to you or maybe meet with your coworkers socially to keep up on the goings on at the office.

    Good luck with the bambinos.

  • Anne says:

    Big fan of the Beco chest carrier, and agree that you need to get some straight talk from the doctor. You really can't stay inside forever, and neither can Charlie.

    Some things, like wearing him in a carrier and even just taking a walk around a museum seem kind of low-germ exposure to me. It's not the same as him toddling around a play area and touching everything and so forth.

    Stay strong, I feel for you. I'm guessing you are in a city because of the no-car thing – there very well might be a support group for other parents of kids born early, etc. That could be really great.

  • Jamie says:

    I want to second Clobbered's statement that it does get better and better and better-and you probably know this, since your pre-schooler is so awesome, right?

    I would also like to suggest that you may also want to make an appointment with your doctor about how you are feeling. That really helped me. My doctor repeatedly talked to me about postpartum depression and my husband's first wife had it three times, so we felt really prepared to deal with that. I didn't know that postpartum anxiety is also something to be watching for and it is different from depression. When I mentioned to my doctor at my daughter's six month checkup that I still felt terrified and lonely and sad and paranoid, she got me to a therapist. I was also given a prescription that I ended up not needing-just telling someone how I felt and having them acknowledge it really helped-but it was great to know I had that option if I still needed it.

  • Debineezer says:

    Wow…Have you tried internet groups? It's NOT the same, but there are boards out there for everything under the sun. Of course, as my fertility doc pointed out, the problem with the internet is that any idiot can get out there and sound like he/she knows jack sh*t. Which usually isn't the case. I love my fertility doc.

    And while it doesn't help NOW, as others have said, it WILL get better. And worse. And better. I think the hardest part was that friends didn't want to "bother" me until I got "settled in". Most of my friends don't have kids, so they knew nothing. Call them individually and disabuse them of this silly notion and ask when you can get together. (I tried a "come visit me" generic message on FB. Didn't work.)

    And again, hang in there. Be ruthless about doing good things for yourself…because really, if mama ain't happy, you can't be your best for baby.

  • Cora says:

    Hi Joy — nine years ago, I was almost exactly where you are, except I didn't have a preschooler. My son was born two months premature, lived in the NICU for a month with lung issues, and then we brought him home where he didn't do much of anything until he was three months old, one month corrected. I took all the maternity leave I could from my Director-who-gets-to-talk-to-adults-all-the-time job to be home alone with the baby. We had a hospital visit for pneumonia — caught very, very early and treated without incident — and like Megan, had to do constant checkups and RSV shots, etc.

    Here's the good news: you've done the hard part. Now that he's two months old corrected, he will start to do things, although not on a precise timetable like JC rightly points out. I think you didn't want to come right out and say that it's been unbelievably boring, because that seems uncaring, but it is stultifying. You've spent three months with a baby that isn't doing anything interesting; babies born full-term start to do stuff after three or four weeks. It's boring and it's worrisome and it's hard.

    And you ROCK. Look how far you have come with him! I know I can't say that from now on everything will be butterflies and roses, but he's finally at a developmental point where he can really engage you in showing what he can do. That, plus getting out and about as Patricia suggests, should help you make it through to summer.

    I won't lie: I look back on that time as the longest year of my life. I'm also really proud of myself and my husband, and our son!! that we got through it. It's difficult to take a long view right now, but seriously, in five short years Charlie will likely as not be screaming his guts out while running full tilt on a playground, causing the other parents to say to you, "He had a lung problem? Really?"

    Seriously, respectfully, you fucking RAWK.

  • Jenny says:

    It sounds a little like you have some post-tramatic stress symptoms, which would be perfectly normal. Make sure you talk to someone about all of this….a friend, your husband, even a professional.

    I bet that you have friends that will come over without their kids. As long as their kids aren't sick and they aren't sick, your son will probably be OK.

    Finally, he is only 5 months and winter is getting close to being over. Things will get easier and better.

  • Karlei says:

    My youngest (who is turning a year old next month!) was born 8 weeks early and our son was three and attending preschool at the time. Like others, I would really recommend some sort of baby carrier for venturing out (and just for around the house). Not only does it tend to stop people from touching the baby, including your preschooler, but it assuaged some of my continued guilt/regret/sadness about all the times I couldn't hold her in the NICU. We got a Moby wrap because I wanted something that kind of enveloped her, if that makes sense.

    I also remembering waiting anxiously for that first smile and it taking so long. If it helps, I feel like the early milestones came very, very slowly and then she gradually sped up, so that she's hit her most recent milestones within an average range. I also tried to make myself stop obsessively checking the developmental charts and just waited for the OT appointments to assess where she was instead of fretting about it constantly on my own. This was easier said than done.

  • Soylent_greenis says:

    What a rough time you have been having, sending a stranger's virtual Internet hug your way.

    Since my advice (talk to your doctor about how you are feeling and try a carrier) has been covered, I'm just going to second getting an Ergo if you don't have a carrier yet. They have a newborn inset, but once the kid gets older, it has a way of distributing the weight in a way that makes it far more comfortable than say, the Baby Bjorn does. You can also carry the older kiddies on your back for longer walks. I can still quite comfortably carry my 1.5 year old in it, although perhaps not as long as I used to. It's the one thing I got for my second child that I really wish I'd had for my first.

  • Melanie says:

    I don't really have any advice, but I wanted to say to Sars that I was really touched by the compassion in your response. It isn't that you aren't usually compassionate or empathetic, but I thought this was extraordinarily so.

    To Joy, I think Sars and the commenters are right on. One thing I tell myself in tough times is simply, "Hold on." It's like a little mantra that really means, "Nothing is forever, even the bad stuff, so you just have to hang on a little longer and soon you'll see the light at the end of the tunnel." I wish you and your family the best.

  • Bubbles says:

    I will echo the advie to skip the stroller and try baby wearing. I used a moby wrap with my kiddo and it was great. The close contact is good for them, and having them bundled up against you means that people don't get so grabby with them.
    Also talk to your doctor about post partum depression. A bit part of it is that you do need to get out, but it doesn't hurt to get checked up for ppd as well. Put your husband in charge for a night and get out on your own or with some friends. You can get through this, but you need to find some you time.

  • Otter says:

    Nth-ing the suggestions to get clarification from the doctor and trying a sling or other kind of carriers so you can get out to not-crowded places.

    Also echoing Sars' suggestion about acclimatizing him to the pram (stay where he can see you, pat him and play with him and talk to him so that he knows you haven't abandoned him totally to be eaten by monsters, yadda yadda yadda), and the other one about trying different positions in it.

    If you want to try acclimatization, it might be helpful to enlist your husband to work on it: he might be able to sit through Superman bitching about the pram easier than you can (giving you time with your older son, or time to yourself. In another room. With the door closed). If that works, then Superman may still test *you* out the first couple/few times, but if you know that he knows the pram-monsters won't eat him when Daddy puts him in it, it's easier to resist the claims of woe and despair when you do it.

  • ferretrick says:

    I'm curious about what keeps you from buying a car if you want to be able to get out more? Even a short drive might be a nice mental break for you.

  • Katherine says:

    I nth the recommendation for the carrier – depending on locale you may be able to rent one or several from a baby store to see which one Superman likes.

    For sitters- you may want to look at Jake's preschool. The teachers may be accustomed to watching children who need more attentive care for whatever reasons (ours is a food allergy!)

    Emotions – go talk to the pediatrician or your ob. All of the feelings/worry are normal but the intensity with which you're feeling them may require some help. And that's ok!

    Support groups are great as long as they don't feed into any paranoia. Make sure you're getting all the help you need. You're not alone in this, good luck, and hang in there!

  • Nanc in Ashland says:

    Joy, how about taking an online class through something like the MIT OpenCourseWare? http://ocw.mit.edu/index.htm Focusing on something you love or have always wanted to learn might help with the mental and physical cabin fever. Maybe there's a skill you want to learn or brush up on that will help when you're back at work.

    I second what nicole and Banana Bunny said about Skype chats. Maybe have scheduled time length and think about an agenda? Also, what about old-fashioned letter writing? Or postcard writing? Sending off something gets you a quick walk to the mailbox and getting snail mail that's not junk or bills is fun!

    A final thought–when you talk to your friends and family, ask them to help in specific ways. I always want to help in these sorts of situations but I love it when I'm given specifics. Run an errand. Walk the dog. Mail me a card. Babysit so I can get a foot pampering. Something tangible that I can schedule and helps you–win for both of us!

    It sounds like you're doing all the right things to try to take care of yourself and your family–good for you! Keep the nation posted, we're pulling for you.

  • Karen says:

    Ok- so I don't have kids so don't yell at me if this is insane comment but can you leave the munchkin at home and take a baby monitor thingy and go around the block? Or just out to the yard or something? I have no idea how long the reception is on these machines, but I'd probably invest in a high powered one that would let me do a few laps in the yard.

  • Erinwithans says:

    I'm childless, and can't comment on the health concerns (though I agree that it seems reasonable to grab a friend, have them purell up, and come on over). But I did move cross country from all of my friends, and I have found google hangouts to be made of wonder. Get a number of people together online, when you can see and hear each other, and have a knitting circle/book club/catch up/drink wine/whatever night. It really does wonders for human contact – I felt much more in touch with people when I could see their faces, as opposed to just talk to them on the phone. It might help with some of the stir crazy a bit. Best of luck!

  • Sarah D. Bunting says:

    Thanks, @Melanie. I would say I can't imagine how hard parenting is, but I CAN imagine it. And it would be DefCon 1 around here.

  • Heather says:

    Just have to join in the Ergo love. I carried my son in that from newborn till he was 3 years old, walking the dog, snowshoeing, shopping, museums, zoos, you name it. I especially liked having him up near our faces, seeing what we see, being part of the conversation.

    Also think the idea skyping with family is excellent.

  • JennyA says:

    Seconding Jamie's recommendation. I don't have kids, so can't presume to speak from any sort of authority there but it sounds like people have a lot of the things that would occur to me covered. But don't forget about YOU. I may not have kids and have never suffered from postpartum depression/anxiety and I'm certainly not diagnosing you — but just remember that it *is* fairly common and there are proven ways to deal — therapy, meds, etc. — and get you over the hump. I *do* suffer from (regular old?) depression and anxiety myself, and I know first-hand how isolating it can feel and also how liberating it is when you realize you can do something about it and … do.

    SO. In addition to all the excellent suggestions from Sars and the others about ways to adapt and change your routine to give yourself a break and a change of pace — don't forget about yourself. And that you and your body have gone through some wacky stuff — pregnancy, stress and anxiety of having a premature baby and having his health compromised as a result. Our bodies and brains are amazing things, but sometimes they need a little nudge.

    (Sanitary) Hugs!

  • Parent says:

    Horrible Internet medical diagnoses became a serious hobby when I was on bedrest. So I don't know if it's normal or OK, but there's at least one other person in the world who has done the same. And I feel like I need to get a whole lot more defensive and convince you that I wasn't this way before babies and I'm totally normal in the head. I am. Anyway, definitely try an Ergo or Moby or whatever you have.

    So here's some random advice:

    Do you have any unemployed or ADD friends who you could email with all day long? (One of mine sent me the link to this week's vine saying our details were different but we have similar feelings and I should probably be Internet friends with the writer.) Talking to adults doesn't necessarily have to be in person all the time while things are crazy.

    Put the kid in a bouncy chair on the kitchen floor and bake something with loads of eggs, narrating everything to the kid. If your hands have salmonella all over them you can't possibly research another horrible disease but you can wash it off easily when you need to help a screaming baby.

    Don't listen to the obnoxious "this too shall pass!" comments from people who have no idea. What you're dealing with is hard and it takes time and yes it'll be over and better one day but right now the days are the longest ever in the universe and that's just the way it is and it's OK to feel that way.

    Are you eating OK? And getting some sunshine? I was telling one of my pregnant email girlfriends to eat so much iron after birth because it's hard to tell when you're nutrition-induced insane with babies. Is there a patch of outdoors where you can sit with the baby? Maybe find some way to shade the kid and get yourself your 10 minutes of vitamin D time?

    Also, Google something other than developmental milestones and early indicators of cerebral palsy! Read so many advice columns instead.

  • Angharad says:

    I'm going to agree with just about everyone else's suggestions of talking to your doctor and seeing how 'normal' a life you're able to have. A lot of the advice on that part seems contradictory, and clarification should help. Also, figuring out a way to take walks (a baby carrier or getting your son adjusted to the pram) is great advice as well. Exercise and a change of scenery can do wonders.

    What I'll also suggest, though, is to find a hobby. It sounds a bit pat and easy, but it's honestly kept me sane during times of my life when I've been stranded in my house due to medical stuff. My hobbies are usually art- or craft-based, and because I'm not particularly good at them, they keep me occupied: time goes by faster and I don't get on the horrible self-doubt/paranoia train of thought. And because it's something productive, I end up with at least a little sense of accomplishment, which can be a big thing when you're somewhat isolated. If there's nothing hobby-wise that you're interested in, try an online class or something similar.

    And finally: You're doing a really good job. You've held it together through a traumatic birth and a complicated few months. You're braver than you realize. And you're not 'normal' – you're pretty damn awesome.

  • LWA says:

    As a volunteer with March of Dimes since 2009, I can absolutely tell you that you and everything you're going through are normal and even expected in your situation. That doesn't make any of it any easier, obviously, but at least there can sometimes be comfort in numbers. A huge part of what goes on is actually a form of PTSD. When your child's life is THAT fragile in the beginning, you're basically living every parent's nightmare, and it's virtually impossible to come away from that unscathed. So, bear that in mind.

    A lot of the moms I work with at MoD have found great solace in on line groups. It's a way to have some social interaction without those pesky germs. The March of Dimes itself has some of these groups, as do other organizations all over the place. I think being in close contact with other premie moms can be enormously helpful and rewarding.

    Additionally, I'm a SAHM of a five year old and a 20 month old, and I take care of a second five year old every day. And I can tell you that even under less tricky circumstances, being home with kids is just an isolating experience, especially in the winter. I mean, I CAN get out freely, and it's STILL isolating sometimes.

    And as several others have said…milestones schmilestones. Sure, they exist for a reason, but honestly I sometimes feel like I'd be damned to know what that reason is. Premies, in particular, do things in their own good time.

  • PBnoJ says:

    Thirding, fourthing, Nth-ing the carrier or sling idea.

  • RK says:

    And to further echo everyone suggesting the carrier, they are awesome, but don't be discouraged if the first style you try doesn't work for your baby. For my daughter, who demanded that I carry her pretty much all the time, I tried the Moby wrap, the sling-style (like what Dr. Sears pushes), the Bjorn, this one shaped like a teddy bear that I can't remember the name of, and then finally the Ergo baby (that was kind of in order of price, too). That would not have been affordable had I not had friends who gave me hand-me-downs. She generally hated the wrap and sling styles, tolerated the Bjorn for long enough to take a walk, but the one she loved was the Ergo (as many commenters already suggested). Such a relief to find one that she enjoyed being in, and it didn't make my back ache like the Bjorn nor was it as difficult to get her into. Since it's not practical for most people to buy all these different carriers, hopefully you have friends who can loan you some to try out.

    I hope you have good friends who are willing to sanitize and even wear masks if need be to come see you. Since my daughter started day care at 3 months old she has been a germ factory, and for my friends who had young babies, I would always tell them my and her health status, rescheduled as necessary to make sure I wouldn't bring a cold into the house, generally didn't bring my kid, washed up religiously, didn't breathe on or near the baby if there was any concern, and would have worn a mask if asked. Some of my friends didn't care about the sniffles, some did, and I respected whatever their feeling was. Some pediatricians, even for non-immuno-compromised babies, actually recommend no public places like the mall or grocery store until a baby is at least 3 months (and has had the first whooping cough shot), so I can only imagine how restrictive you might have to be with a baby with lung issues. My heart goes out to you guys, and I hope you are able to find some solutions to alleviate the stress. You all sound amazing.

  • Marie says:

    Seven years ago I was in your almost exact situation including no car and intense job, but minus the preschooler. I'm not sure if you're limited in your ability to use a carrier because of the supplemental oxygen or the baby's weight, but the day my kid finally hit 8 lbs and fit in the baby bjorn was one of the best days of my life – freedom! After a prolonged bedrest before giving birth, I was completely over the daytime TV by the time we came home from the NICU so I mostly shopped online, knitted, and tried to do at least some work.

    The good news is 2-3 months corrected is usually the turning point when things finally start to get much better. And, of course, 7 years from now, you'll have a second grader who wakes up at 4 am because he is so excited to get to school and be the lead in the class play (seriously – just this morning – urgh!).

  • Maria says:

    I agree that you need an online tribe. It will make ALL the difference. It's also great to have some moms on Twitter to talk to. It's neat to see updates during the day and feel connected as you go about your business.

    I think you need to have a sitter sometimes so you can go out with friends you already have. I also think you should have some friends with kids come over and play for bits of time. Between having an older child out among others and even things like going to the grocery or having your husband leave for work…your family is already exposed to germs, period. Try to avoid having sneezing people over and be done with it.

    The situation is hard, but temporary. You can get through it, but you do need some tweaks. I wonder what your baby hates about the pram. If you could get him to tolerate that somehow, your life would be so much better. I wonder if putting down a sheepskin beneath him on it would be soothing? Between the warmth, the soft feel, and the shock absorption, it could be worth a try.

  • Laura says:

    Another suggestion for a carrier – I mostly use a k'tan, which is like the moby but you don't actually have to wrap it. I don't know how much your son weighs, becuase I know many of the carriers say that they need to be 8 pounds to use them, but when I was researching I found that that number comes from the Baby Carrier industry standards (the k'tan used to be promoted as good for preemies, though it looks like they've removed that from their website per the new standards). My son was born full term but small and gained weight slowly, and I used it well before he hit 8 pounds. Bonus – when they are so small, it's nearly impossible for strangers to get up all in the baby's business.

    You might want to check out resources geared towards parents of kids with cystic fibrosis; a friend's two kids have CF and she had very similar restrictions on activities and worries about a cold leading to a hospitilization when her kids were babies.

  • Ty says:

    Hang in there, Momma! I was full-time mother to a baby and a 3-year-old for just a couple of months, and it was the hardest job I have ever had. And that was without the added isolation of a preemie that can't take the world's germs. Check with your pediatrician, but it sounds to meet like you need a babysitter, like right now. I remember how goddamn FREE it felt to leave my house without the kids. You need and deserve a break. Find a healthy babysitter with lots of experience with babies, ask him to wear a mask and Purell often, then walk out that front door all by yourself.

  • Ade says:

    When I was home with my little guy, a friend of mine, who had two preschool age children, would stop by my house for 30 minutes to an hour to hold my kiddo after she dropped her kids off at pre school. I would go for a run, or a walk, or visit the grocery store, or take a long shower. She was so happy to have baby snuggle time that she couldn't wait for me to sneak off. Once she moved away, I hired a student from the local university to watch my kiddo for two hours once a week. We were able to work out a deal because she was an early child development student and could use the time towards her class work. Most of those afternoons, I met my friends at the neighborhood park. We'd chat and watching their kids play would remind me that it really wouldn't be long until my little guy would be out there climbing everything. Maybe a similar scenario would be an option for you.

  • Jen S 1.0 says:

    Joy, you are a superhero.

    I don't have kids, so take this with all the salt you like (perhaps surrounding this tasty margarita, yes?).

    First, a child with big medical issues so early in life tends to have said medical issues take the place of his/her personality a bit; understandably so, of course, but keep in mind that the "getting to know you" stuff you would have been doing during a more normal birth and home routine was disrupted. So while Charlie's catching up physically, you're catching up mentally, trying to realign his two realities. Right now the one thing you know is he hates the pram.

    Well, get to know him a little bit more. Try the baby slings and other suggestions, talk to your doctors about enjoying him and how to do that with a medically fragile child. I think it might help the anxiety tornado to get to know him as Charlie and not the cluster of OMG! moments you've had to focus on.

    *I'm not trying to sound like a lecture-y bitch, I swear.*

  • Bec says:

    I do not have any children and much like Sars I can imagine what it would be like if I did and it's not pretty. However, I did spend the first few months of my life in a NICU and had chronic lung disease when I was sent home. For Joy and the commentators in similar situations I'd just like to let you know that I'm now 30 and I graduated university with honours, I have a fulfilling career and I've traveled all over the world. I get more than my fair share of colds and they often turn into chest infections but it hasn't held me back at all.

    From the stories my parents tell about caring for such a sickly baby I can tell you what my Mum used to do in order to cope with having been at home with me all day long. When my Dad arrived home from work she would hand me to him, put the lead on the dog and she would walk the dog for an hour. She had to get out the house and this was how she did. It also gave my Dad some alone time with me. This may be an option if your husband doesn't begin work again until the children are down for the night (dog not required). Also mobile phones weren't around in 1982 but you could call someone and have a chat while going for a walk.

  • lsn says:

    One suggestion – is there a local ex-prems playgroup near you? I've found being able to go to a fortnightly group where all the mothers have been through the NICU experience, are paranoid about disease and also understand you when you talk about "corrected age", "chronic lung disease" etc to be really helpful. Of course it's like all these kind of groups – I've clicked with some mothers more than others. The NICU may know of something local, or the internet. Even if there's not a local group it might help to make contacts with people who are nearby and whose kids either like the pram or who have access to a car and can come over for playdates/adult conversation.

  • courtney says:

    I'm late to the party, but I thought I'd direct the LW to the wonderful blog of Alexa Stevenson, parent to one born-premature child who's thriving & another recently arrived baby (http://flotsamblog.com/). that's where I learned that the "quarantine baby from any possible germs" approach was a Thing, so you'd probably find a lot of common ground there.

    a warning: she does discuss a few medical scares, including some decidedly unhappy outcomes. it's nothing that would portend bad news for Charlie (more some bad stuff that happened during her first pregnancy), but if you think that would just make it worse, then maybe save it for a less anxiety-ridden time.

  • Joy says:

    Hi all, Joy here. I can't tell you how much I appreciate both Sars' advice and the amazing number of lovely responses. I've been lurking on this site for over a decade and you guys are why. I'm all verklempt.

    Anyway, an update. Charlie is now six months old (corrected; nine months actual). He is bigger and happier than when I wrote this letter-after some serious effort, he is fine with the pram! The secret: waiting until he was old enough to sit up a little. If the weather would just let up, we could actually go for walks. I did try carriers (ands thanks for all the great suggestions!), but I found them awkward with the oxygen cylinder, which fits much more unobtrusively under the pram. Plus I can cover him with the Rain Cover of Impenetrability, which makes me more comfortable.

    Other than that, he's doing surprisingly well. He's had six…? colds now, thanks to the petrie dish that is his lovely brother, but no hospitalisations, which is miraculous. Doctors and nurses continue to give contradictory advice, partly because we are cared for by two different regions (we live on a county border) and they disagree a lot. You can imagine how helpful that is. We have begun copying everyone in on everyone else's paperwork, which does help, but we still have one doctor who thinks he's doing great, a community nurse who has been Chicken Littleing all winter, a specialist who told us to keep doing what we've been doing, a consultant who says we need to get out more…It's parenting by dysfunctional committee, and though in theory we the parents get the deciding vote, in practice we tend to follow the strictest advice, because who wants to deal with the guilt if you head to Starbucks and he comes down with something awful?

    As for developmental milestones, I have decided to do my best to ignore them. He's a very happy boy and all his limbs work fine, so I'm just gonna let things happen. The big problem is the medicalisation of every. little. thing: He's not eating solids? He may need a gastrostomy tube! He hasn't rolled over? Maybe you need a physio! Everything is dialled up to 11, and it's hard to keep my bearings. His primary consultant says he's doing fine. I'm ignoring everyone else.

    This will be horrendously long, so I'll try to respond to the major themes. Depression: yes. I think you are right. I didn't think so until last week (the timing of this column is superb), when I finally started to realise that I was not coping. It was hard for me to recognise it, because I haven't cried since the day he was born and therefore thought I was fine, but…no. So I gave the health visitor four pages of notes on My Feelings, and that in itself was really cathartic. We'll be talking over things this coming week. And as for PTSD, I wouldn't be surprised about that either. Charlie nearly died in his first week-I was asked if I wanted to have him baptised on one awful night-so I expect that that, plus the three further months in the NICU, took their toll.

    As for getting out and about, I think that will improve when the weather does, though the lack of car is distinctly limiting. We used to live in a big city, we moved to a smaller town and commute to work via train, and we just didn't need a car before…and now we can't afford one. Hopefully it'll happen in the next year. Until then I think it's walks and play dates with Jake's friends, all of whom have the same cooties that he does. Mind you, I'm back at work in July, so it'll be less of an issue by then anyway (a carer from Jake's nursery is leaving her job to have a baby, and she is going to look after Charlie and her baby in our house in a sort of nanny-share arrangement, which couldn't be better. We already know her and she's awesome.)

    As for online tribes-aside from you guys and Cracked, as well as every newspaper under the sun, I've been wary. Sars mentioned the fun 'a new respiratory virus is coming your way aieeeeeee' articles dotted around like bomblets, and I'm already paranoid enough. Some of the prem sites are hard going…there are some very poorly children being discussed, and I feel both stupid for whining when we're so lucky and terrified that I'll read something upsetting. I'm basically a wuss. However, the online course idea is SPLENDID-I'm totally going to do something on the MIT site, so thank you!! (I tried to follow the link to the parents break room group but it looks closed…?)

    And Bec, you're the first ex-prem with CLD I've ever come across. It is wonderful to hear how well you've done, and you should count your blessings that I can't corner you and ask you a frillion irritating questions!

    Finally, thank you for all the kind words. I don't think I'm doing a very good job, or anything that anyone else in this situation wouldn't be doing. What choice do I have? I'm lucky to have Jake to remind me that although babies are not my forte, if you can keep things going long enough you get a toddler, and they are the BEST.

  • Hi Joy,

    Just wanted to chime in on the milestone thing. My daughter and her cousin were born three months apart so we have lots of opportunities for comparison. Basically? They are guidelines! Doctors and books make it sound like there is much less variation than there actually is. Also, just because your kid does something early (or late!) doesn't mean that another milestone won't come late (or early!) For example: my daughter started rolling over at 3 days, but didn't walk until 16 months.

    Also, my daughter was born at the end of Feb and haaated solids. Would not touch them until she discovered chocolate at Easter the following April. At nine months she was still doing that tongue thrust thing that they say means not ready for solids… (Now she eats normally, though there was a lot of fretting about how picky she was before we got to this point) When we were at our wits end about the food thing, the doc we had was all "quit breastfeeding, it has no nutritional value after the age of one anyway". Which was not helpful at all because being hungry made her insane but didn't help her hatred of food. So I would follow your instincts and go with the advice that a) seems to make sense b) comes from professionals you trust c) isn't crazy making

  • Nikki says:

    No kids here, but I live alone and work from home about 40% of the time, so I get the stir craziness.

    You're bored, that's the bottom line, and I think you need to find a hobby you really enjoy that you can do from home or around your home. Personally, I'm a fan of video games (which are much more engaging than television), but you could choose reading, crafting, gardening, decorating, etc. Preferably, pick something where you have to engage your mind and get in the zone.

    The point is to come up with a project you're excited about that stops you from being preoccupied with your infant. He's boring at this age, and spending most of your time focused on him will probably only make you feel frustrated and depressed. If you can't think of one big thing, try lots of different little things until one gets you really interested.

    I'd like to second all the advice asking you to clarify with your doctor how much you should restrict your behavior.

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