Archive for NICU

not what was supposed to happen

I’ve been meaning to post about all the Things that have been happening in my life. Going back to full-time work (not totally my choice), finding a preschool for T, T and all the awesome that is T, and hand-wringing over whether or not we go for #2.

But that isn’t this post.

This post is about how the universe is a real motherfucker sometimes.

My best friend, this girl I grew up with, this amazing lady who has stuck with me through my worst moments, just had her baby at 29w.

The details are not really mine to share, nor do I know very many of them anyway, but without going into all that, I’m just going to say that I’m pissed. I’ll admit, I was a little jealous because I really believed she was going to have the easy conception, pregnancy, delivery, followed by adorable and super-smart baby. And you know what? I WANTED to be jealous of her, because I wanted her to have the storybook pregnancy because she deserves it.

And now instead, she is joining that club that you never really want to join, the NICU mom club. The last thing I ever wanted to see was her join this shitty club full of incredible women.

I guess I just can’t resist making it about me but it’s late and I can’t sleep now. Getting that phone call, hearing about what had happened, it set off flashbacks. The panicked feeling in my chest has yet to subside.

The baby will be okay. The baby has to be okay.

odds and ends, return of the bullet points

  • T will be four months old tomorrow. He is starting to outgrow his 3mo clothes and grow into his 6mo. *sob* My baby!! I missed a three month post for him but I do plan on writing one for four months because dangit, he has been growing by leaps and bounds and I need to document it!

  • My cousin-in-law B had a chemical pregnancy last month. It was their first month trying so it’s probably just one of those things, but I still always get sad/worried when I hear about things like that. I hope it was just a fluke and they get their sticky baby soon. T needs a cousin to play with! It will be weird when my baby cuz is a daddy though…

  • The cat has been pooping in inappropriate places. I’m not sure if this is just older sibling syndrome kicking in or if she needs to take a trip to the vet. If it’s the latter, I have no idea how I’m going to lug a 12.5lb baby and a 22lb cat to the vet by myself.

  • WARRIORS!! T was our lucky charm tonight. ‘Nuff said!


  • T has his first home visit with this development program our NICU referred us to. Another reason I love our NICU, I don’t think he qualified for the program, strictly speaking, because it’s meant for micro-preemies who are at higher risk but because of some of the issues he had in the NICU the head of the NICU referred him anyway, and as our social worker said, they do whatever Dr. S tells them to, so he is getting a visit tomorrow. I think if we weren’t having regular visits with my cousin-in-law B I’d be a little more worried but since she’s been hanging out with us weekly and seems to think he’s fine, I’m hoping for no surprises tomorrow. (B is a pediatric physical therapist).

  • I finally set an official return date for my leave. June 17th. I can write an entire post about how this is making me feel.
  • what the NICU gave me

    I just bottle-fed, then nursed a baby who alternated between squealing with gas pains when the bottle was in his mouth and screaming in hunger whenever I took the bottle out of his mouth to try and burp him. Then while I was nursing he would periodically lose his latch and clamp down hard on my nip.ple. So hard that if he had teeth I would have suspected him of attempting to bite it off.

    After that I changed his diaper. And was peed on when he somehow managed to kick off the rag I’d thrown over his boy parts.

    Now I’m hooked up to the pump to finish off what he didn’t.

    If the path here had been easy, I might not feel so grateful at this very moment.

    I’d probably still feel just as tired though.

    the breast intentions

    In the days after T’s birth it felt like my life revolved entirely around my breast pump. Time was divided into how long it had been since my last pump and how long until the next pump. My mom and I even got into a fight one day because she said she simply couldn’t understand why I was so obsessed with pumping when it was more important for me to go see T in the NICU.

    I didn’t realize it until I yelled the words out through my tears that it was the only thing I felt I could do for him. It was the only thing that made me really feel like his mother.

    When your baby is in the NICU, it’s hard to know what exactly it means to be his mother. You hold him for maybe a few hours a day, feed him two, maybe three times, change a couple diapers. But you never really feel like you are a vital part of his survival, and now that I’m home I can state the obvious with absolute confidence, it’s nothing like being a mom with a baby at home.

    For me, pumping was the one single thing that made me feel like I was his mother. Even during the weeks when he couldn’t drink my breastmilk, pumping was my reminder that I had a baby, that I really was a mother.

    I never really talked specifically about this with the other NICU moms I met but based on the amount of traffic in the NICU lactation room, I feel like it’s safe to say I wasn’t the only one who felt this way. It probably wasn’t a conscious thing, it certainly wasn’t for me, but it’s there and it permeates the NICU. I met so many moms in there who dutifully pumped every three to four hours, including moms who were barely squeezing out a half ounce of milk per pump but continued on faithfully anyway. All of us moms wanting so desperately to feel like we were providing something for our babies that no one else could give them.

    And so we trudged into that lactation room time after time, plugged ourselves into an uncomfortable machine that did not even remotely resemble the dreams we had while we were pregnant of what it would be like to nurse our babies, and we did what moms do – sacrificed time, energy and our own comfort for the sake of our babies.


    T has been home for almost a week now and he’s kinda sort of starting to get this whole breastfeeding thing. Just today he managed to take two whole feeds in a row from the breast without supplementing with a bottle (of expressed milk that’s been fortified with a bit of formula). For the most part he doesn’t have issues with latching, just a major problem with not passing out like a drunken sailor at the end of Fleet Week, every single time I put him to the bo.ob. Paul and I joke about how he fakes being asleep to get out of breastfeeding but sometimes it doesn’t feel like a joke! Sometimes he will nurse for a few sucks, and then go limp like he’s in the deepest sleep ever, and once I give up trying to wake him (palm rubbing, running my fingers up and down his spine, tickling his cheek, etc.) I put him down and his eyes snap open and he’s screaming bloody murder like, “Where’s my food woman?!”

    But like I said he did manage to nurse for two full feeds today so maybe we’re headed in the right direction. I’m cautiously optimistic.

    Volume wise, he’s been drinking between 75-100ml per feed now, which seems like a lot for such a little guy, especially since he’s still eating about every 3-3.5hrs. I’m starting to worry that my supply isn’t going to keep up with him which is another reason I’m trying to nurse him as much as possible during the day along with pumping. Before he came home and I was pretty much exclusively pumping I produced about 21oz per day. Now that I’m nursing him too I have no idea how much I’m producing beyond what I’m pumping (which is only like 15-17oz now), I’m just hoping its more and not less, but it feels like a stretch that he could be getting 6oz from the bre.ast…

    life beyond the NICU

    T has been home for a full 24 hours now and it still feels like this is all a test. I was texting with EJ about this last night (because once again our lives have intersected and we are kind of going through similar journeys – although I won’t pretend to know how much strength it takes to make it through a 4 month NICU stay!) and she said she and her hubby are going through the same thing with their little MB.

    It totally feels like the NICU is going to give me a grade on how well I do and every feed I worry that we’ll “fail” and they’ll take him back! As though they’re still here somehow watching over our shoulders waiting to swoop in and rescue our baby from his rookie parents.

    It goes without saying that going home from a prolonged NICU stay is NOTHING like going home after spending a couple days in postpartum with your baby. I have no idea what it’s like to stay in postpartum with your baby but I imagine you feel as though the baby belongs to you and you get to decide what happens to your baby even though the nurses are there to help.

    In the NICU, as much as the nurses and doctors may try to give you the sense that you are the parent (i.e. for awhile we were the only ones allowed to hold/touch him without wearing gloves/gowns when his immune system was at it’s weakest), inevitably you end up feeling as though your baby is not fully yours because you do have to ask permission to do things like hold, feed or change him. There were definitely times when nurses asked us not to hold him because they wanted him to get good rest so he’d be awake and alert for his next feed, things like that which I imagine don’t happen when you have a “well baby.” Add to that the fact that someone else is making all the decisions around his care, i.e. what kind of formula he will eat, what his eating schedule is, how often his feeds will increase, when he can be in room air, when he can be in an open crib, etc. and it’s impossible to feel that sense of ownership that non-NICU parents must feel right from the beginning.

    As hard as it is to feel like your baby is not completely yours, there is a silver lining. Spending so much time in the NICU with the nurses means you have weeks (sometimes months) to learn from people who take care of babies for a living, how to take care of your baby. You spend so much time learning about your specific baby before you ever have to care for him on your own. We learned T’s wet diaper cry, his hungry signals and about his deep love of his paci all while we were still in the NICU and I think it helped us know what he was asking us for last night.

    On the other hand, when you’ve been in the NICU for an extended stay, it is scary as hell to suddenly be on your own. We’ve gotten so used to the monitors and the team of NICU nurses always ready to swoop in that it’s pretty terrifying knowing you don’t have that even if you don’t really need it. Our nurses were pretty hands off with us during the last week or so because it was clear that T would be going home soon. They let us take the lead, changing him, checking his temperature, feeding him, burping him, deciding if we wanted to hold him or just let him sleep in his crib. We did most of it on our own for the hours we were in the NICU but I guess it’s just different knowing that they’re there and now they’re not.

    Beyond our adjustment from the NICU, there is T’s adjustment. And clearly he is needing to adjust.

    We had to sleep with the TV on and for most of the night also had the light on. When we turned everything off he fussed and was so unsettled, when we turned things back on he calmed right down. Our poor boy spent the first three weeks of his life in an always lit, usually noisy NICU (beeping monitors do not phase him one bit) so it was to be expected that going from that to a dark quiet room would feel completely alien to him but it wasn’t something I thought of until EJ mentioned MB had a hard time with it on his first night.

    It’s also REALLY hard to figure out how much clothes he needs to be wearing. The rule of thumb they tell you is one layer more than what you’re wearing but our room is so friggin’ hot (we have the space heater turned to 72 degrees) that Paul and I are literally in underwear and we’ve got him in a onesie + fleece swaddleme and his feet still feel cold. Tonight we’re going to torture him by taking his temperature (which he hates with all the hate his little self can muster) after having him wear different numbers of layers of clothes.

    We’ve been trying not to hold him to sleep too much because we don’t want him to get used to it but his sleep quality just doesn’t seem very good. I finally caved this afternoon and let him lay propped up on my legs as I watched TV in bed until he fell asleep and that seemed to do the trick. I think he’s either cold or the adjustment home is making him feel insecure.

    Another thing that took me by surprise, I was expecting that once he came home I’d have to pump less because I could breastfeed him a couple times a day. That would be true except my bo.obs think that EVERY TIME he cries he must be hungry and immediately start to drip all over the place. So I’ve actually had to pump more frequently because a) he’s not hungry every time he cries and b) breastfeeding tires him out too much so we have to give him the bottle as well to make sure he’s getting enough each time he breastfeeds.

    I cannot wait until he’s a bit bigger and we can attempt exclusive breastfeeding (well, except for those six hours after I take my meds)! But I have a feeling that won’t be for awhile given he is only 5.5 lbs right now.

    Anyway, just a few thoughts on our first day as the only people looking after our little man.

    Oh and funny story, my first solo diaper change this morning (Paul’s leave doesn’t start until tomorrow and my mom was still on her way over) became three diaper changes. He was fussing and doing the wet diaper cry/kick so I changed him. About a minute later I hear a noise that clearly indicated POOP. I took a peak inside and yup, poop. He started freaking out so I only waited about a minute or so (rookie mistake) before I changed him again. Another minute later and once again the ominous sound of runny poo flying out of my baby’s behind. Took another peak inside and another small pile of the green stuff was staring right at me. So I changed his diaper like 3 times in under ten minutes.


    T says it’s rough having rookies for parents

    a lesson in patience

    So T did not come home today. He gained some weight, but not as much as they’d like to see and I think he was being a bit of a “pokey” eater last night and had some pacing issues so the doctor and nursing staff just wanted to make sure we felt comfortable feeding him.

    Well, apparently the kiddo decided to make a statement today about how ready he is to come home because he ate like a champ!

    I got there a little after noon and he pretty much woke up as I walked in. I breastfed him on one bo.ob for about 30 minutes (with some pauses for burping) but then he only took about 12ml of the fortified breastmilk after that. I was a little worried about that because there was no way to know how much breastmilk he got, but judging on the amount I pumped from the side he fed off of vs the side he didn’t, I think he did get at least about an ounce or maybe a bit more.

    His next feeding though, he took SEVENTY ml’s from the bottle! That was an all-time record for him to be surpassed only by his next feed (which Paul gave him) of 80ml!

    Since we had one more night of baby-free life (sort of) we decided to go to another restaurant that’s not exactly baby friendly where I gorged myself on raw oysters and raw fish! I love raw oysters and haven’t had them in almost a year because obviously they’re a no-no while pregnant.

    I had really hoped that we would be bringing him home today, but short of that today was one of the best days we’ve had in the NICU and I think it really boosted my confidence about the fact that we can totally do this!

    Tomorrow can’t come fast enough.

    here’s looking at you kid

    T continues to improve in leaps and bounds. Yesterday his feeding tube came out and today I got to breastfeed him again! He latched on immediately and sucked away like a champ. I’m only supposed to feed him 1-2x per day at the bre.ast though for now because we will need to fortify my milk with powdered formula for awhile to make sure he gains enough weight. Alas, it appears I cannot get rid of the pump that easily.

    As long as he gains weight by tomorrow morning’s weigh in he will be home by tomorrow night.

    I don’t know how many times I’ve said this over the past three weeks but this doesn’t feel real. Could I really have my baby at home by this time tomorrow? Really?

    Paul and I went out to dinner at a wine bar tonight since it could be our last night out for awhile. We joked about how we need to take advantage of the most expensive babysitters we’ll ever have. He asked me if I was nervous at all about bringing the baby home and honestly, I’m not. I was starting to feel so terrified in the weeks before he was born, wondering what would it be like having a baby? Could we handle it? Would we suck at it? Would I resent him for how big of a change it was to our lives?

    But after everything we’ve been through, all those fears? Completely melted away. I’m simply overjoyed that we’ll have him here at home with us, happy, healthy and very much alive.


    I’ve been wanting to write about how much I wish I could have made it just a few weeks longer into my pregnancy. Not just to give T more time to grow, growth-wise I think he was actually pretty ready to come out (lungs mature, keeping himself warm, eating well, etc.), but because I really loved being pregnant. I loved my baby growing inside me, feeling him move…I loved being his whole world. I was lucky, I had a good pregnancy (up until the end that is), and who knows maybe I would have hated those last few weeks, but I find myself in quiet moments longing to have experienced them. Sometimes I even find myself staring jealously at the heavily pregnant bellies that are abundant in the hospital hallways.

    I know that the c-section was the right thing to do under the circumstances. Anything else would have been an unnecessary risk to T that neither Paul nor I was willing to take. But still, I find myself wishing I had had a chance at “normal,” to have gone through labor, to have had my baby with me in the hospital room instead of having to struggle into a wheelchair each time I wanted to see him in those first few days. I wish that we didn’t have to learn what it’s like to be NICU parents, I wish we didn’t have to see our baby so sick or sign so many consent forms so that they could run all those tests on him. I wish things had gone differently.

    But I’m so thankful for the people who took care of him, who took care of all of us really, my doctors, his doctors, the whole nursing staff. Yesterday he had a nurse who had never seen him before, she commented about how he had a fan club, that other nurses kept stopping by to visit him and exclaim over how good he looked. Every day that we’re there, nurses and doctors come by and tell us how happy they are to see how far he’s come. The staff at this hospital is so amazing and our family will be forever grateful to them.

    And as much as I wish things had gone differently, when I look at this face….


    None of that seems to matter at all.

    what if Your healing comes through tears?

    Sorry for leaving you hanging like that with the last post, the hours have just been slipping away from me between pumping, sleeping, eating, going to the NICU, feeding and snuggling with T.

    Last Wednesday he had another dramatic turnaround, this time in the good direction. As suddenly as he went into what one of his doctors actually referred to as a coma on Sunday, he came out of it two days later and has been getting better and better every day since.

    Amazingly he is now taking feeds by bottle, all his lines are out, he looks and acts like nothing at all out of the ordinary happened last week. One of the neos during rounds last night called him a miracle and I can’t argue with that.

    So thank you all so much for your prayers because I’m pretty sure they worked! The doctors admit they did nothing to treat him, other than to support his platelets with transfusions and WBC with the GCSF shots. His recovery is the work of the one true healer!

    They do think they have a partial explanation for what happened to him and it is not their original theory about my meds, though it’s still possible the meds played a role. They found my antibodies in his blood and believe that they caused something called Macrophage Activation Syndrome, in layman’s terms, my stupid antibodies confused his macrophages (which are like garbage collector cells) which went haywire and started “eating” everything including healthy tissue, i.e. his poor little liver. This caused his platelets to be constantly burned up trying to protect his liver from bleeding.

    I’ve been trying to write a daily record of each day in the NICU, what happened procedure/test-wise, what his numbers were like, etc., mainly because I’m anal and feel like there needs to be a record of it (I’ll probably ask the hospital for all his records but I’m assuming there will be a lot of medical jargon I may or may not understand). Also, it’s really the only way I can capture the ups and downs we’ve had so far over the past 2+ weeks. If I ever finish it (while I can still remember everything), I will publish it here.

    Continued prayers would be appreciated, we need his platelets to continue to hold steady or go up without transfusions, his WBC to hold at a normal level, his liver enzyme tests to continue to go down, he needs to take all his feedings by bottle and regulate his own body temps before he can go home!