guilt of a preemie mom

all preemie parents- let's be real- moms deal with guilt. wren is just about 10 months old and i'm still overcome with it periodically. not only do i think about the possible hardships she could face in the future, but looking back i remember all that she's gone through.

in the beginning i felt guilty looking at my baby for the first time in a picture, when i was still too groggy to go visit her... hearing the updates from her daddy.. about how cute she was... and that she was needing help to breathe. then staring through that clear plastic at my baby.... nauseous from the surgery, the meds, and the warmth of the nicu... so sick that i couldn't stay next to her. and every time i left it was just as hard as that first time. blaming myself for what happened- what had we done? that poor baby... all the pain and trials she would face weighed on me. i took refuge in knowledge, learning everything i could about all things preemie. i kept up an emotional wall when i thought of her. she was my daughter, but the guilt and grief were too much... if i opened my heart and gave myself over to being her mommy i could be heartbroken.. things were so sketchy. the nicu is a roller coaster ride, two steps forward, one step back. i remember the first time i told her i loved her... i just sobbed and sobbed.... i sobbed because i hadn't said it sooner. i was dealing with so much self-loathing, so much stress, so much worry... and there was my heart, inside that isolette, and i couldn't even hold her when i wanted to. i felt blessed with every diaper i changed. and i hated that we didn't have her home. i hated that i couldn't keep her in my body- that i couldn't care for her longer! that i couldn't give her what she needed! i couldn't even take care of my baby inside, and that left me unable to care for her outside while she was stuck in the nicu. when i took her home i was constantly jealous of other termie moms. people who weren't dealing with monitors and oxygen, people who didn't have to worry about germs or physical therapy for their infants... they didn't have to worry about feeding issues or weight gain. they could just be a normal happy family.

if you have a baby in the nicu, or recently out of the nicu, or long-time out of the nice, if you had a termie with complications, or you had a perfectly healthy baby and complications yourself.... just know that what you're going through right now is totally normal. any time we have experiences outside of what we expect, our mind grieves a little... the loss of what was expected. whether we expected a natural water birth, a healthy baby, or something silly like a full term pregnancy... all of those are things that we have to adjust to not having.

it takes time. some issues take longer than others. as the baby's health stabilizes, the first time you're able to feed them, the first time they wear clothes, with every smile and sweet snuggle when you get them home.. with every milestone that that precious baby hits it will open up your heart a little more and make all the horrors of the nicu seem a little further away. now, with wren getting so big, and doing so much, my main worries (and therefore my guilt) rest in her developmental issues. will she have CP? will she have a learning disability of some sort? and those are things that we won't have an answer to for a few more years to come.

how to deal

• make a sympathetic friend. they should have experience with the nicu, preemies, trauma in general, or be the most sensitive person you could imagine meeting. (most people without personal experience are bound to say the wrong thing. and even if, by chance, they don't say the wrong thing, you're likely to dismiss what they say because "they've never been there".) 
• join a support group. this can be a message board, a group in your area- or at your nicu specifically. i can't stress enough the importance of talking to people who have been there... sharing your pains, asking your questions, venting about stupid nurses or a day full of desats.
• rely on your spouse for support- but don't expect them to be in the same place emotionally. it is vitally important that you come together with your husband/wife during this time of hardship. (like any time of hardship, you will either come together, or be torn apart.) that said, my husband and i were consistently experiencing different emotions, requiring different things, processing information differently. he was extremely supportive- but mostly he was just putting up with my crazy. (i had to visit at least once- preferably twice per day. her bed had to be cute with matching blankets. she had to have little signs and pictures. i was crying all the time hating myself because i couldn't cook her longer- he was just going to work and doing his thing, dealing with the situation. as women, we're emotional... as men, they're fixers. there's a problem, they deal with it... they don't sit in a room and cry about it weeks later. usually.) so don't get angry when they think you're being nuts for buying a mobile that fits the nicu bed specifically... or they think one visit per day is enough. they love your little one too- they may just be handling it differently.
• see a professional counselor... talk to a trusted spiritual advisor. this can do wonders. even moms i've known who were skeptical have been happy with the results of seeing someone. you have to make sure you see someone who is compassionate, aware of the situation, and that you click with. anyone that doesn't meet those requirements is just a waste of your time. (because you won't feel like you can open up- and that's the whole point- right?)

remember... many parents have been where you are... and they all felt the same way.

another preemie

what she says-------> i couldn't have put it better.

those parents are just thinking all the same things we thought. what did we do? what can we do? how is our life going to change? what is going to happen?

being a parent who can't just go around popping kids out whenever i feel like it, (or when the bc fails), i have mixed feelings about all of this. of course, i probably have mixed feelings about you too. (do you have kids? did you almost die trying to have them? have you lost more than 2? i suppose there could be a "jealousy checklist"... with varying answers ranking you differently on "charla's jealousy meter".) but, despite the fact that "we're so blessed" has become trite, kids are a blessing. really and truly. now, i just want my allotted reasonable amount.. maybe 3 or 4... but if i had to have beaucoups or none- you'd have to give me the "quiverfull".

so, whatever your thoughts on the alternative "public school classroom" sized family.. you have to try and understand what these people are going to be going through. take a moment... and try.

you said what?

today, while out with wren, i received the expected "how old is she?",and some of the "she's so tiny/small/little", and a few "what a little miracle!".. all of these are perfectly acceptable.. i fully expect that people will be curious and would much rather someone ask outright. (that's what i would do, after all.)

BUT, as i'm walking to the car, pretty pleased with our little trip,

am i the only one struggling to connect with my baby?

this is what you expect: this is what you get:

i thought it was time to do another post on this issue after reading some of the replies to this question on thebump.com preemie message board. the issue of bonding and preemieness is SUCH a common one. but i have to say, even i didn't have the courage to talk about it in the first few weeks of wren's little life....

seeing her in that isolette (plastic box), not being able to take care of her (nurses constantly over my shoulder- telling me what to do, and how to do it), constant fear of attachment (there are so many things that could take away this little life), she is so fragile (what if i do something wrong and hurt her?), i feel like she won't love me (look what happened to her! i couldn't even keep her in my womb and care for her like i should have. the guilt is so heavy), there's so much to learn (throw out what i thought i knew about being a mommy, and any tiny bit of security on the subject).

kudos for the mommy who posted the question... that takes courage and honesty- something we should all have more of. (i've chopped them a bit, but hopefully got the intended point across, if you'd like yours taken down or changed just let me know.) here are some of the responses:

"Your body is very likely in panic mode. Your emotions are just on the back burner while you deal with what is essentially an "emergency situation."

- i had never thought about it this way... but it's sooo true... i've often heard that preemie parents can have a form of ptsd. just dealing with all the trauma and loss of pregnancy and stress of baby's (and often mommy's) health is a lot to ask.

"While Zoe was in the NICU, and even once she came home, I was in crisis mode. Letting myself bond with her was a slow process of leaving crisis mode and slowly releasing my fear, worry, and hyper watchfulness for/of my daughter.
Zoe is my first child and I don't have anything to compare the process by which I felt bonded to her to. I would say it took many many months and was never a sudden feeling. In all honesty the process is still happening now."

-ditto. i haven't gotten to take wren home yet. but i feel more and more like her mom everyday.

"While in the NICU things that helped for me included (once they would let me do them): kangaroo care as often as they would let me, being there for feedings once we started to nipple her, giving her a bath, changing her diapers myself, and doing other "cares", dressing her and changing out her isolette, and just sitting there reading to her. I was in a different situation, I had only one and no other children at home and I was off work the whole time she was in the NICU. I say those things helped in the NICU and they did, but I didn't feel really really bonded with her until after we were home."

- i can't agree with this mommy more. the only way that i started to feel connected was to care for her, cuddle her, and comfort her. i would add in too that information and actively being part of wren's care helped me feel like a mom. (though i'm sure the docs and nurses hate me for it! :)

as well as being there for proceedures and tests to "contain" her, or soothe her with words or holding a dummy or whatnot.

"Zoey has been home with us since May, and I am just starting to feel like her mom. I feel confident and more connected to the rest of the world, and I think she feels it, too. Be patient with yourself."

- what a great point. you know, being married to a sociology major, i have to bring up social interactionism. (the theory that we see ourselves through other people's eyes.) i hadn't really applied it to preemie mommyhood. but i HATE having baby fat (not much, since my little one only cooked about half of what she was supposed to) and no baby to show for it. i HATE buying baby stuff and being given a gift reciept. i HATE seeing other mommies with their babies and feeling like i'm some sort of three eyed monster who leaves my kid with strangers across town. part of what makes this so hard is being a mom, and no one in the whole wide world realizing it when they see you- you're missing the kid. the other day one of the nurses was laughing about me getting spit up on. i believe i replied something like, "it means i'm holding my baby, my baby's eating, and possibly that i'm feeding her. i can't begrudge the spit up." in essense, it's proof that i'm a mommy. take that skinny girls- i have spit up on my shirt, i'm allowed the gut and gigantic boobs.

"It is very normal. When DS was in the NICU and even first home I didn't feel a bond with him. I liked him, but I just didn't really feel like he was mine. I really think it has to do with not being able to make decisions for/about them."

- i liked wren. as i've said recently, i loved her in an "everybaby" sort of way. in an "i hope this baby makes it out of this" way... but now, i'm beginning, just beginning to love her in a "this little poop machine is mine and i can't get enough of her" way.

"I remember about 2 weeks after Lily was born finally telling her that I loved her when we left for the day, and I wondered why it hadn't occured to me to say this sooner. "

- i think it took much longer than that for me. in fact, i still don't say it all that often. i cry everytime i do. i'm crying now just thinking about it.

"To be perfect honest, I was almost scared of my son at first! I was scared of what was to come, I was a little disappointed in myself, and he looked a little scary (red skin, very skinny, tubes, etc...)"

- so true. for those of you who've only had experience with termies, take how you feel looking at the picture, subtract my baby, add your baby, now multiply by your freaked-outness by 10, that's how preemie parents feel.

"In the NICU, any time something quasi-normal would happen, we'd (us and any of the other parents around us) always say "like a real baby." The nurses would always correct us and say "he IS a real baby" or just look as us like we were nuts. I don't think they get how surreal the whole thing feels as parents. "

- if you read me much or talk to me often, you know i say this all the time. and i almost always get the same response or look from people and nurses.

september 5- treading water

we're stuck here till wednesday... though i suppose i should just be happy we have a date! haha.. which is more than i ever really thought we'd have.

hmph.


i can't stay away from her now. it's strange.. now that i know she's coming home i feel like she's really mine. it's almost like i feel they gave me my daughter- now she's mine and i can barely leave her to sleep. i actually walked down just to hold her a little bit ago, i roused her just to hold her.. i haven't done that in a long while.

she's been taking around 100ml at each bottle feeding! i think that they may have been underfeeding her for the past month at least. when she was still getting some feeds gavaged they had her at only 45ml. she's taken more than that for the past few weeks from day 1 of being on an ad lib schedule. (ad lib means they feed her as much as she wants, whenever she wants. or, they call me whenever she wants to nurse for as long as she wants. :) right away she was taking at least 80ml by bottle. she now weighs 5lb 7oz! and has been gaining weight like the champ that she is. or heifer that she is. that's my little pet name for you wren- heifer... though i suppose little bird is a bit more endearing.

i'll be rooming in on tuesday night with the oxygen equipment just to make sure that i'm confident with it. then wednesday, it's off to the nest!

august 2- i'd like a little less peep people

today has been a good day!

peace.

in rounds they lowered her peep (positive pressure ) to 5. it had been at 6. they're checking her c02 at 4 this morning and will be able to tell if she's expelling it when she exhales. after we get the results of that, we'll know if she can handle being without the extra pressure. (we hope so, this is a step toward weening her off the cpap altogether.)

this was going to be a picture for daddy, but mommy found it too horrifying.

this is the result of cpap prongs..

her nasal cannula sprint went AWESOME! she got down to 40% and hung out there for about an hour! she was on 30s on cpap all day. (except for a short stint where they were having a hard time getting a seal... the prongs weren't fitting properly.)

they also changed her gavage feedings from over 30 minutes on a pump, to gravity. (just like it sounds- they just hold the syringe up, and it runs in her belly.) the bolus gives the feeling of "fullness" like a normal person has. eat, get full, stop. (rather than the pump over hours...) when we get that "full" feeling it releases all sorts of hormones and enzymes for digestion. she's tolerated this well... with no problems. she is still grunting/writhing/whining/crying/gassing A LOT. it just started about 4 days ago. i think it could be caused by the hmf. (i caved on the issue. i'm a bad mom- i know. believe me when i say i'm losing sleep.it just seems like there are already so many things that i have preferences on... i don't want to argue about that too.) i guess it also could be that she's found "her voice". in general she is much more vocal than she used to be. or maybe reflux? (though she hasn't been spitting up since a few days ago... and they attributed that bout of spit-ups to the fact that she had been on the trophic feeds for a few days when she got her blood transfusion.)
nns didn't go so well today. she's been latching about every other day so far. i attributed her apathy to doing it during/after a feed.. but today she was good and hungry... and instead of getting down to business, she just stared around at everything..completely uninterested. i bet if she get's hungry enough she'd be interested. (but i suppose that might just be cruel. :) i am thankful for her alertness. she seems to interact with her surroundings, and be interested in everything now.

you want me to do what?

she's going to have wrinkles by the time she's 6 from that "concerned" look she always gives.

she was up 115grams today. that may not actually be correct- but it could be. that puts her at 3lbs 15oz! (we'll see if she's still there tomorrow. :) but, even if she wasn't really up 115 grams... check out this weight gain:

the one on the left is from 7.17

the one on the right was taken today.

(the purple dummy is a size smaller than the green one.)

i have had the most uplifting experiences with her lately. she just makes me smile. i love reading to her... watching her sat high to the story of narnia. (we're reading the magician's nephew. tonight was the creation of narnia. she LOVED it. although, i'm not sure she understood the correlation. :) i love listening to music with her... either on my phone (joshua radin station on pandora) or her ipod (she shares an earbud with me. :)... it gets harder and harder to leave her everyday... i think within a few weeks i just won't be able to bear it! i definitely feel like a mommy now. now i can walk in and pick her up. i can untangle all her cords by myself. i know when she's ok, and when she's not. i change her clothes. i change her bedding. i do her laundry. i put her to breast (though she's not doing much there these days!) today, i got to put her mobile up in her crib. i just feel like i have a daughter... and i can't wait to nap with her on my couch!
speaking of naps... i picked up her co-sleeper yesterday! i got a great deal on it at kelsey's. they do price matching, and also pay most of the shipping themselves... so they're able to cut costs. they've got ADORABLE things there! i'm going to wait until wren's daddy is back home to set up her nook. i feel like that should be a mommy-daddy bonding time. :) (she's getting a nook in our bedroom. we only have a 2 bedroom, have all the furniture to set it up as a spare bedroom, and were planning on getting a co-sleeper at first anyway... so she doesn't get a nursery until we move next year.)

this is a picture from this evening... snuggled in her supercute bed. thanks for the adorable bedding auntie rebecca. :)

she'd been on the mask (vs.prongs) for about 6 hours at this point.

luckily her nose usually goes back to it's regular shape. usually.

also, i'd like everyone to notice that her clothes match her pink and yellow bedding.

that makes me a good parent- right?

july 30- amazing healing

so, if you read my last big post (here) then you know that wren was diagnosed with ROP, retinopathy of prematurity, stage 2, zone 2, two weeks ago. we were told that if it got any worse, we'd be looking at laser surgery.
here's some information on ROP. the diagram below shows the zones. as you can see, zones 1 & 2 have to have intervention. (whereas zone 3 can usually be left alone.)
today, the doctor said after her exam that he saw no signs of retinopathy! i'm just in shock. i know that god can do miracles. i know that god answers prayers. but to have something so...so... real happen in our lives. it was one way, now it's another... that's just... breath-taking! (of course, it could be that the doctor from the week prior wrote down the wrong information. that would be a MAJOR screw up.. but i guess it is within the realm of possibility.)

her eyes are all puffy from the exam

it seems like the past few years, the lord has definitely lowered the "hedge" around us and our families. (if you know in the book of job satan tells god that he has "put up a hedge" around job and blessed all the work of his hands- and that is why job serves him. he tells god to take that away, and that job will no longer serve him. job 1.8-10 charla standard version :)
anyway. it's just easy to feel like we've had more than our "fair" share of crap as of late. but, i'm reminded of god's answer to job, when job questioned the "justice" he was being denied. (why should bad things happen to good people...faithful people?) god answered, "where were you when i laid the earth's foundation? answer me if you understand." and "have you ever given orders to the morning? or shown the dawn its place..." "would you discredit my justice? would you condemn me to justify yourself?" job answered back "i know you can do all things, no plan of yours can be thwarted." (all that is around job 40-42ish.) wow! and that really sums up this life doesn't it? that with all the craziness that happens we can choose to take comfort in god and his plan, or blame him. either way, his will will be done.
rather than drowning in a pool of tears i've decidedly focused on the blessings that we've been given. (well, maybe i'm focusing on those things while swimming in a pool of tears.) and my, how we have been blessed! just as god has allowed us to have adversity in our lives, he has also taken care of our needs, and shown us mercy in so many ways. wren has not had NEC, IVH, she hasn't required extreme amounts of breathing helps, and now she doesn't have ROP. this isn't to say that she won't have problems, but, she's come this far without major hurdles. and that, in and of itself, is a blessing. (now she just needs to get to age 3! i guess i should start with age 0 first!) we also have been taken care of physically and financially. it seems like just when we've spent the last of our money on gas- random money comes our way!

the neonatologist over the nicu spoke with me today for quite some time about wren's development etc. she said that she can't guarantee that what we talked about yesterday won't happen... (she was in the meeting.) but she doesn't expect wren to have any of the severe issues. which at least makes me relax a little. yesterday was a trip! today was a little better. she also said that in her estimation that wren would probably go home in closer to a month. (THANK GOODNESS! but i'm not getting my hopes too high up there.) i talked to her a little more in depth about whether wren is behind. she said that the bout of infection that wren had for a week or so was really wasted time. when she was sick she wasn't developing her lungs at all. she said she's where she should be for having had that spell.

today katie was taking care of her. she did just fine. (yesterday she was having some reflux, really the first reflux of note that i've ever seen. she's also been having some issues with pooping. they think both of these could just be a reaction to being off feeds for a couple of days when she got the blood.) this evening she had a new nurse, she seems like a great lady, and was super caring to wren AND competent! what a combination! :)
wren weighed in at a whopping 3lbs 8oz last night.. she's still in the 10th percentile... but trending up!
i bought the car seat tonight. that was SOOO weird! it's the first big purchase we've made. i'm planning on picking up the co-sleeper this weekend. and finishing up her nook in our room this next week. this is the one i decided on:
i decided that i was going to carry her in a sling or wrap for a good portion of her baby time. lugging around the car seat, or dealing with the hassle of a stroller just seems like too much. especially since we're expecting that she'll be just around 5lbs when she comes home. (of course, i can kick myself later and buy either a universally adaptable stroller, or the britax one that goes with this seat.)
i also decided that i like cow print- who knew?

july 29- rude awakening

sorry for the delay in posting pictures. it is just a bit of a hassle for me... and i'm feeling a bit overwhelmed today.

what an adorable outfit! my favorite!

achoo! mom caught me mid-sneeze!

we had the family meeting today. (even though thadd was gone. and will be gone for roughly 2 more weeks.we'll be having these more frequently when he gets back.) apparently i was living in la la land. here are the cliff notes:

breathing-

• when can we go back up on nasal cannula sprints? ween down the cpap pressure? (from 6 to 5)
• when they see a trend in less oxygen requirement

• situation with lungs?
• expect her to be in the nicu at least 2 more months... possibly need to go home on oxygen.

feeds-

• when can we start back on the non-nutritive sucking?
• at the nurses discretion

• is it possible to breastfeed a feeding while sprinting? (since it seems she may need the cpap for a while longer?)
• yes. as she gets the non-nutritive sucking down, we can slowly add in a feeding while she sprints.

• when can we give her feeds by gravity? (right now she gets them over an hour.)
• they're going to start weening that down. she should start getting them over 30 minutes tomorrow.

overall health-

• why the repeated newborn screens? (the one they took today makes #4!)
• #3 had a processing problem. nothing with wren. they're only taking them when they've drawn blood for another reason- not heel sticking just for that.

• hematocrit issues?
• should resolve itself. but, by giving her the transfusion yesterday, they reset her clock. delaying her own production of red blood cells by a bit more time.

eyes-

• results so far?
• immature eyes. which we expect because she's immature- right?
• ROP stage 2 zone 2. are you shocked? did you read my last post on this issue and remember that the doctor told me JUST "immature eyes"? because he SURE did! and then none of the other doctors felt the need to pass on that information. neither of her primary nurses knew either.
  
• if her ROP gets any worse she will need laser surgery. no doubt. it needs to stay where it is or get better in order to avoid the laser.

vaccination-

• deferred schedule-
• they definitely didn't like it. and insisted that we get the shots before she leaves the NICU. i told them we had decided to wait until she got bigger. (they did confirm that the same dosage that is given to 15lb babies is given to 3lb babies. that's what the FDA and AAP recommend. so people do it.)
• the synagis is actually an antibody, not a preserved virus. so instead of basically infecting someone, and causing their body to make antibodies, they inject the antibody to start with. we've decided, since it is an antibody, and the risk of contracting RSV is so high, and the risk of serious side effects, that we will go ahead and give it to her. it is done monthly, and has to be done throughout the whole season.

post nicu- (this is the part i never should have asked about!)

• wren will probably need occupational therapy (OT), physical therapy (PT), and speech therapy (ST)
• later, the doctor mentioned her chronic lung disease (CLD). i'd never heard that she had it. one of the other attendings had said that he wouldn't say that she had it.. that was just a few weeks ago. :(
• she's at risk for problems related to ROP, strabismus, hearing loss, cerebral palsy, and some level of mental retardation. we should know by age 3 if she's out of the woods on these issues.
• the doctor told me outright that i shouldn't work. (not that i was going to, or want to, or considered it.) she said that having wren is going to be a full time job. between her therapy appointments (OT, PT, ST etc), and her pediatrician check-ups, and her developmental pediatrician check-ups, and her ophthalmologist/optometrist. not to mention what i will have to do with her at home in our "free" time. i can't be the diapering, feeding mom. i have to be the reading, diapering, feeding, teaching, challenging, talking, mom. she said that even children with "delays" can be bumped up by just having a strong parent involvement in therapy. (basically making our home life one big developmental playground for her.)
  
• we will be enrolled in army exceptional family member program. what i know about that i learned from google here.
• wren is eligible for state aid wherever we live due to her "special needs".
• they're going to do all the research for our upcoming moves to coordinate with tricare and find doctors and therapists ahead of time. they're also going to coordinate getting the synagis while we're home on leave.
  

so, that was my day. i broke down crying toward the end.. with all the talk of "special needs" and all the doctors and therapies... it was just too much. i don't know if i can do two more months... i just don't know.

on a good note. she is still a temperature rockstar. :) keeping her temp up in her open crib now. i'm so proud of her for doing so good with that. (if we could just get her off that stupid cpap!)

in her big girl crib! (i promise, in the picture above, she's really under all those beanie babies!)

we got to do the non-nutritive today. she latched! yay! she got some milk, but not much. (i pumped to "empty" beforehand.) it was the strangest feeling! for those of you nicu mommies reading this that haven't had the chance to put your baby to breast- keep pumping! it is totally worth it when they get to that point.
her oxygen needs haven't been bad at all! this morning she was in the high 20s. last night was great too. today on cannula we got her down to about 45, and had to put her back up to 50 for the last little bit.

please keep little wren in your prayers. i thought we were almost out of the woods... but she's got such a long road ahead.

due date: 48 days, 23 hours, 27 minutes. I'm jealous of big fat, miserable, swollen, and generally unhappy, pregnant women. to everyone with children- remember how blessed you are. to everyone who popped out a kid only worrying about some nausea and elephant ankles- you are the luckiest of all. give your kids a kiss, and remember... people like me would do most anything to be so fortunate. I can't wait until we're a family.