bittersweet news

well, many of you know that we had our EI (early intervention) evaluation yesterday... here's a bit of history on that in case you're unfamiliar with the EI program.

wren passed, er... failed...er... didn't qualify. which is great news! it gives me hope that she's actually "going to be ok". of course, we're still early to see exactly what possible effects her prematurity could have (some we wouldn't notice until she's learning long division).. but even something so small as being "normal" for her adjusted age is really encouraging.

the bad part is that EI is the main source of support for kids here in

not me

i certainly haven't been using puffs as entertainment for wren the past few weeks. (she's not very good at eating them yet, so if i was to put them in front of her all the time, it would keep her busy for at least a good 15 minutes... if i did that she would at least be getting pretty good at her "puff grasp" by now...)

i would absolutely never forget to pack warm clothes (it's spring ya'll!) and happen to find one outfit in the trunk for the 50-60 degree weather... then proceed to have her wear that outfit even after she had a wet diaper leak in it the day before. (IF i did that i would have definitely at least dried the pee pants in the drier.)

i didn't proceed to make a 5 hour trip (which is 6-7 hours for those of you unable to translate that into "10-month-old-babytime") during the middle of the day with the knowledge that my daughter is "such a good traveler" only to find that in reality she is "such a good sleeper" since all of our other recent long trips have been in the evening/nighttime... that would be just plain silly.

not me.

choosing a daycare for your preemie

thanks sara for writing this up! you rock! it's going to be helpful to so many people. :)

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I was glad when Charla asked me to share my experiences on going back to work after having a preemie. Since I didn't start my blog (http://takingontheworldwithourboy.blogspot.com) until my son was 9 months, I had never written or really spent a lot of time reflecting on what that experience was like for me. I had so much to say, I asked Charla if we could make this two posts! This post is about the daycare that we chose for my son, in light of concerns about his health.

My son, Marino,

n is for nicu

ok. so n for nicu isn't terribly creative- but i hope this post can be helpful to some of you that are facing a stay in the nicu and weren't able to have a nicu tour. if you know someone who has a baby in the nicu, or a preemie already at home, this can be helpful for you to see where there baby is/was and what they saw and dealt with, as well as preparing you to visit the baby in the nicu if you get the chance. this first post will be about breathing interventions.

as a disclaimer, all nicu's are different. so the machines may be different, the equipment may look different and the procedures and policies will definitely be different... but the general flow of things will most likely be the same. the neonatal intensive care unit can be overwhelming, scary, and is definitely stressful. it's important to seek out as much help as you can and try to prepare yourself as much as possible. if you have any questions about specific definitions you can look to the right in the margin for the glossary.. it has pretty much every term you could possibly hear. (it opens in a separate window- so no fear- you won't lose track of this post.)

to start with... here is a basic diagram i found online. then we'll go into some categories and pictures.

• in our nicu i never saw a baby with the vent through its nose, but it can be through either the nose or mouth. 
• the picc line can also be in the arm, or any large vein. 

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.