Quickie Updates (Babies, Laundry, Thanks... )

Thank you so much ladies for the kind offers of help yesterday on our cat crisis... once again you all totally blow me away with your generosity & support. ((HUGS)) & huge waves of gratitude are zipping across country for each of you right now, I feel so blessed to know you all.

I'm in a bit of a rush, but wanted to update quickly before we're off again. Boys are doing ok... there were some concerns Con might have needed to go back on oxygen (pretty alarming to N & me, since he's been off oxygen for a week) but he's been recovering on his own, & always looks good, so they're letting him work through it for now. Val got another bump up in his o2, but is back at 1/2 liter of flow. They're both nippling well & gaining weight-- both guys are now over their birth weight. They're starting to talk circumcision for Con sometime this week if he gets his breathing back under control.

& on the "cat laundry"-- our neonatologist said to wash it well & it should be ok... i'm still super nervous about it, but N is convinced it will be alright. If there are smells or stains, it's gone, but I'm not sure about the rest of the stuff. My mom showed up again today & cleaned furiously & was SO worried about the laundry & the guys. She was crying when we got here, scared for the boys (we told her about Con maybe needing more air). I guess our trip to the NICU finally convinced her of the huge difference between a preemie & a newborn, but I felt AWFUL for making her feel so badly. She really does mean well, & would walk through fire for us & the boys. I just needed my folks to understand the reality of what we're dealing with & didn't know how else to get it across. I feel like I'm living in a permanent state of guilt. We have a very close family & I know we'll work through it, it's just that the "working through it" sucks for everyone.

To those of you who blog/post on the board-- I'm still reading, even if I can't always comment, know I'm still here, following your story & thinking of you.

Chaos

In an effort to be helpful, my mom was putting things away in our second bedroom while we were in the NICU with the guys. She inadvertently shut our cat (Felon) in the room, which is also where we've been storing baby stuff, for 15hrs. We found him, let him out & she offered to wash all the clothes, sheets, etc that had been on the bed where Felon had made his "nest." While doing this, she discovered that he had peed & pooped all over everything on the bed. Specifically, ALL of our boys' things-- clothes, towels, sheets, blankets. Everything. Everything got washed, unfortunately it all got washed with MORE cat poop that somehow got missed & made it through to the dryer. I don't know if any of you are familiar with cat stink, but it NEVER goes away. Everything smells totally foul. She tried vinegar & baking soda-- no help. The clothes, etc. are not bleach safe, & we don't know how to clean this stuff so that its safe for the guys. (& me, since we would like to TTC again & don't want toxoplasmosis.) So we're thinking we have to toss everything. We're going to check with the boys' docs & see what they think, but we don't want our kids hanging out in cat stink-- that stuff is toxic. This would mean everything we got at our shower is gone. The first outfits Val & Con ever wore-- gone.

Sigh.... I'm grateful my guys are doing well, but can't we catch a break on the small stuff in the meantime? I didn't know whether to laugh or cry over our cat crap chaos, so I did both. I'm SOOOO frustrated. Thank God the guys had a good day today or I might have lost it totally.

Another Rough Day

Val is back on higher flow & more o2. It's ok, he's working really hard lately-- they've got him trying bottles now too & the dudes are doing their best. (They've each taken some whole bottles, but are still taking a lot of their feedings by gavage & BFing kind of sucks with a nipple shield. I'm tempted to get rid of the thing, but everyone swears it's good for preemies.) Overall, despite the setbacks today & last night, they're slowly moving in a good direction. (At least according to the NICU staff. N & I are too personally invested to tell much.) I just hate that they have to work so hard right now... they should be blissfully growing away, safe & sound in mom's belly. Instead, they're doing all they can to eat & breathe & stay warm. They're working so hard, & we're so proud of them, but I wish I could have given them just another few weeks.

My mom did ok today.... she didn't listen to my directions (or she did, but immediately forgot & treated them like newborns anyways.) I had to remind her not to rock, not to stroke them, to watch their chin positioning (she claimed she was, but did not & cut off Con's breathing & only listened once the nurse corrected her. Thank God I asked the nurse to hang out & supervise while she was there, or I might have had an "event" myself!) I was a huge stressball all day, & the only good part of the visit for me was that she finally ackowledged that visitors might not be the best idea right now. I really really hope the whole NICU experience sunk in & we'll have less of this "oh, they're fine" crap. I'm so surprised that this is coming from my folks. They're usually so supportive, & I just dont understand their inability to grasp the seriousness of the NICU preemie experience. Anyways, I hpoe today helped, & I already feel guilty both for letting her come & unsettle my guys & for subjecting my mom to the really awful experience of watching the baby you're holding alarm like crazy. The boys are doing ok tho, so most importantly-- no serious harm was done. (Although as I type that I feel even worse for adding stress to my poor little men's lives. Sigh... I just can't win.)

In happy news-- my best friend snuck into our house today & left us several dinners for the week. The girl can't cook to save her life, but got her parents to help out & made some really womderful dinners. When N found her note, I totally burst into tears-- it was completely unexpected & exactly the kind of help we need. She made no demands of us & just gave, & I am beyond grateful.

I am exhausted & still feeling really down.

I miss my babies. So so much. My heart breaks everytime I have to leave them.

Random Updates on LIfe in the NICU

Nolan & Conrad, kangaroo-ing

Today was one of those rough NICU days, for those of you who've had kids there-- you know what I mean. (for those of you who haven't had kids there, I hope you never know what I mean.) The guys are doing ok, it was just a rough one on mom & dad. Val is back on oxygen (which is fine-- anything he needs, we want him to have.) The guys run the show & everything happens at their pace, but some days are just more wearing than others.

Also-- my mom is coming with me to the NICU tomorrow. I don't know that I'll let her touch/hold the guys (we want to keep them as stress-free as possible), but I need a ride up there (N has a mandatory work meeting) & we decided it might be good for her to see what the NICU is really like. Alarms constantly going off & tubes & monitors everywhere, etc. We spoke to our nurse today & she agreed it would be ok, just to move at the boys pace, & that it might actually help to have a nurse explain to her the difference between a preemie & a newborn (i.e. preemies really do have special needs, they are NOT just tiny, cute newborns.) So please cross your fingers it goes well. I know I'm in charge & the nurses are awesome & will give me all the support I need, but I'm still really anxious about her visit. Wish us luck!

Because I'm feeling stressed & anxious, I'm going to focus on something positive...

Breastfeeding rocks. :)

(disclaimer: this is NOT a knock on moms who can't or choose not to breastfeed. It really is a lifestyle change & just doesn't work for everyone. I would NEVER judge of condemn a mom for making a choice other then mine-- we all have to do the best we can with the hand we're dealt.
That said, I adore bf-ing. Even though I'm pumping most of the time (& it is MUCH harder to be motivated to get up every 3 hrs for a pump than it is to get up for my kids), it's one of the few things I can do that really makes me feel like a mom. N loves it too-- he is totally committed to making it as easy for me as possible. he cleans & sets up our pump every time I use it, sterilizes everything every day, keeps a log of when & how long & how much we pump, & brags to anyone who will listen how much milk we're getting & how great it is for the dudes. & it is great for the dudes-- they've had zero residuals left in their tummies since we switched to all breastmilk, they didn't need the jaundice lights, & are gaining weight wonderfully (knock wood.) & there are few things as beautiful as a happy baby sucking away. I know not everyone is as enamored of bf-ing as I am, but I love it. I totally lose track of time & get lost in the private moments I get to share with my sweet boys.

3 posts...

in one day. crazy, i know!

just wanted to say i'll update later on with the dudes' latest, as we had some pretty big changes today. i just REALLY needed to release some steam... i've been really frustrated with the lack of support & needed to grump it for a bit. feeling better now & thanks for listening guys :)

Super Sweet New Hats

Val's "hot tamale" look Conrad in a cool blue puff ball hat, matching his frog suit

Seriously, how cute are they? :D

NICU Related Family Rant, Part II

First-- thank you!!! I wish I could wrap all you ladies in a big hug, I REALLY needed to hear those words of support today.
My mom, who had been our "go-to" person, apparently lost her mind today. My brother is in town, & while we've had this talk with my folks before, it never seems to sink in. My brother can be pretty selfish & has been known to single-handedly ruin family gatherings (& does, nearly everytime he comes home. It's not entirely his fault, as my folks refuse to acknowledge how unreliable he is & continue to rearrange their lives around him. N & I refuse to do this, & it creates some tension.) Anyways, they called last night to see when he bro could see the boys. I said I wasn't sure, & IF he'd be able to, it would have to be time-limited & at a time that didn't disrupt the boys. They were a bit annoyed with that, but seemed willing to work with us. UNTIL-- they told me the bro was sick on Monday. With the flu. & wen we said we're really sorry, but no way is he getting in the NICU then, my mom got SUPER annoyed. I could hear the pissiness in her voice & she actually had the balls to say "but it was over 72 hrs ago & was probably food poisoning." Are you kidding me? When I got upset over her tone & said I don't appreciate her questioning parenting decisions, she said "well, I've had a sick kid before. I think you're just overtired, so I'll let you vent on me, even though I already apologized to N." At that point I was so upset I just hung up. This woman knows what we went through to have these boys. I gave up pretty much everything to keep this pregnancy, we lived in constant fear of losing them, & we already lost 2 kids-- losing another is a very real fear for us. She's been nothing but supportive & awesome... right up until the minute my brother is involved, & then suddenly my caution (which she totally agreed with last week) is now paranoia & explaining why the NICU is not similar to having a "sick kid" is "venting". I expected so much better from her, & am really hurt that she can't see that she's putting her son's selfish crap ahead of my sons' health.
N & I were super hurt & upset by this crap this morning. I actually checked with the neonatologist bc I was feeling so guilty, & the doc totally agreed with us. Half of me wants to explain to my folks why their expectations of us & the boys are inappropriate, & half of me knows it won't change anything, as long as my brother is involved. When all is said & done, I know we made the right decision-- every time they've had visitors, the guys have had some sort of event that has moved them backwards, & we WILL NOT take any unneccary chances with them. I just hate that people who I generally respect & find solace in are acting like spoiled children right now-- I want them to see where we're coming from, but I don't know if that's possible.

Update & Frustrated Rant

They moved the boys today to a different part of the NICU. It's their "Special Care" Unit... still intensive care, but for babies who are fairly stable. Val is still in a "crib" but back on 2L of flow thru his cannula. He does fine on lower flow & room o2 levels until he eats... digestion takes up so much energy for him that he starts desat-ing( this means his blood oxygen levels drop too much, for those not familiar with NICU terms) & they increase his flow & o2. Con had to go back into an isolette in the wee small hours this morning.... he was having a hard time maintaining his body temp. They're trying to wean him back to the crib tonight. Val did awesome breastfeeding this morning, but was too exhausted to suck when we tried again this afternoon. Con was super sleepy & not into it this afternoon either, so we'll try again with him when we go back to the hospital tonight. Both guys are now getting all breastmilk for all their feedings (all feedings are still gavage for both) but they are digesting it all MUCH better-- far fewer residuals (food left in their tummy) & jaundice quickly disappearing.
In "mom" related health news (much less interesting): they kept me extra day in the hospital & hesitated releasing me yesterday as well. My blood pressure is still awful (170/110 on Monday, & now is less high but still up there ever since. like 150ish/90ish). They've got me on lasix & blood pressure meds (both safe for breastfeeding) & constant d/a's til they figure out what's going on. Til then, I'm supposed to be taking it "easy". Yeah, right.

Rant coming up: Sometimes I wish the only family we had was our little family-- me, N & the guys (& my mom). My mom has been the only consistently reliable & completely understanding support person we have lately. My dad seems fairly oblivious allot of the time. My brother finally came up to visit, but I seriously doubt that he came to see us or his nephews. He came because he couldn't afford to fix his truck (my dad's truck, really) & wants my folks to pay for another year of tuition (he's turning 25). My dad seems to expect us to do command performances of the babies, which is infuriating me. How often to I have to explain that they are NOT normal newborns? One of my sons requires oxygen to breathe, & the other is in a plastic box. They eat through a tube in their nose. Visitors wake them up & take away energy they need to learn to eat, breathe, stay warm, suck & swallow. Our days are dictated by the boys' schedule & needs-- they are our ONLY priority. I don't care if you want to "show off" the kids. They need rest & quiet, & if we have to alienate everyone we know to keep the boys healthy & moving forward then that's what we'll do. We lost 2 babies & went through a year of hellish medical testing & almost 8 mos. of a very difficult pregnancy to bring these boys here, & we are fully prepared to kick any amount of a** we need to in order to care for our guys.

& to everyone who's told us to "get some rest while the boys are in the hospital": you have GOT to be kidding. No, we don't get tons of rest--I have to get up every 3 hrs to pump, & N is amazing & gets up with me to help & clean up. We spend pretty much all day in the NICU next to our babies, not bc we HAVE to, but bc there is no where else we want to be. No matter where we are or what we're doing, my heart & thoughts are with my sons, & it is far more stressful to be away from them. Anyone who thinks that NICU time is better spent in mom & dad staying home & "getting rest" has never had a child in the NICU.

&, no offense here, but I feel that no one has any right to make demands of us right now. We will NOT be accommodating any one's schedule but Val & Conrad's. period. They are OUR boys. Mine & N's, & no one has fought harder or loves them more than the 2 of us. No one wants them home & healthy more than us, but we will NOT rush them or put them at risk by trying to speed things up for selfish reasons. All we ask is that everyone be patient & make no demands or requests of us right now. My mom has done nothing but help, & has never questioned or doubted us or our judgement when it comes to the boys. She hasn't expressed disappointment or complained or asked anything of us, but she is the only one.

Sigh. I really needed that rant. If you know me in real life & read this-- don't be offended, just cut us some slack. We're doing our best.

The 2 Most Perfect People in My World

Valentin working his paci after his first bath
Val all stretched out.

Conrad snoozing & airing it all out.

NICU Update

We spent all morning with the boys. Both guys had an ultrasound on their spine, we're waiting on results, but we should get them back today. Absolutely hated seeing my sweet boys covered in blue goo & miserable... Val screamed every time I had to let go of him.
Pumping is getting better-- both guys are now getting about 2/3 breastmilk at every feeding. N has been awesome helping me pump-- sets everything up, cleans everything up & keeps a log for us.
They upped their feedings to 35cc's (their max until they start gaining weight) & Con's bilirubin levels are headed down, but Val's still need to be monitored. They're planning on moving both guys to cribs tomorrow... we'll see how that goes.
It stresses N & I to see things moving so quickly, but we're trusting the NICU folks to read the boys' cues & make sure they're being appropriately challenged but not stressed. Val is back on room air at 2L, & they're going to work on decreasing the flow today, since he's not desat-ing nearly as much. His nose is looking better as well (no more blood clots & the swelling is going down).
Con is doing well at the breast-- definetly interested & even got a solid latch once or twice & some good practice sucks. We're going to try Val for the first time this afternoon. Bc we want to breast feed, they won't introduce a bottle until they're latching well & getting some milk at breast feedings. I think we're scheduling a consult with the lactation consultant for tomorrow, so hopefully that will help, since this is my first try breastfeeding as well.
I'm almost writing this more as a log for myself... sorry if it's a bit dis-jointed. N & I are waiting on lunch, then a quick nap, then some pumping, then back to the NICU for kangaroo time & breast feeding with the dudes. We pry won't leave the hospital until after dinner, & will be back up here for their 9pm feeding. Thank God we live so close!
I'm finding myself increasingly frustrated with anything & anyone who interferes with my ability to be with my boys & pump for them. It seems so hard for some people to get that NICU babies are pretty much all-absorbing. & we have twins, so the pumping time, kangaroo time, breast feeding time all are increased-- there just aren't enough hours in the day to keep other people happy & care for my kids & keep my sanity. So of course, "other people" are out the window-- i have to be sane to care for my boys, & they are our only priority right now. I wish people would get it.
If you made it this far, thanks for reading the ramble... as you can tell, nap time is much needed! :)

Overzealous?

Is there such a thing as overzealous NICU parents? N & I are there as often as we can be & do everything the nurses let us-- change diapers, dress them, swaddle them, take temps, kangaroo care as often as possible, pump every 2 hrs, etc, etc. We basically never see other parents... where are they all? The nurses haven't complained about how often we hang out (although some of them seem confused about how content we are just to sit next to their isolettes & some of them seem genuinely happy to see us so often... depends on the nurse.) We basically jsut made the boys dictators of our schedule-- we sleep when they sleep (or blog when they sleep, in this case!) & hang out when they're up. We don't want to step on any toes, but they are OUR kids. & we're there so often, I wonder why we so rarely run into anyone else... especially bc most of the babies are on similar feeding schedules.

We get discharged tomorrow night... totally dreading it. (Although I miss my bed & critters, I'll miss my boys more.)

Our Boys

Valentin Nolan, 4lb 15oz, 17 inches, 10:37am, March 19, 2009, (Val)

Conrad Michael, 5lbs 2oz, 18 3/4 inches, 10:39am, March 19, 200, (Con)

Val holding N's thumb and working his paci.

Both guys are doing great-- Con went on room air last night at midnight & has been doing amazing on it since. (Very few episodes of apnea & fewer brady's-- most self-recovering.) He ripped out his feeding tube so many times they switched it to his nose (he's still ripping it out, but isn't ready to go off it yet, so he's stuck for a while.) Val is on 1liter of oxygen still, but at 21% (very low) but he's working a little harder to breathe, so we don't want to rush him. He's also having some bloody nose/snot issues. The bloody noses are likely bc his nasal cannula is drying, so they added a humidifier this afternoon & he seems to be much more comfy now. The snot he's still working out from the c-sec (amniotic fluid doesn't get squeezed out of their lungs during a c-sec like it would in a normal birth). All their chest x-rays are clear so far. Their arms are splinted to keep their IV's in & secure.

They're both doing really well on their feedings so far, so if they keep it up (no major spitting up & make sure they're digesting everything) they'll be weaned off their IV's at 3am tonight. (fingers crossed! Altho they will leave a track line in just in case.) Their issoletes are still keeping them warm. They need to be able to maintain their body temps at 27deg Celsius before they can try a big boy crib, & right now Val's is around 30 & Con's is set at 31.5. Tomorrow they think we might be able to put them to breast for the first time. (They won't get much, if anything, but it's good practice for them & me.)

They each have a "dimple" at the base of their spines (Con's is slightly larger) & they're having u/s on Monday to make sure the dimples are merely that-- the docs want to make sure the skin is closed over them & that their spinal cords aren't affected. It's likely just a precaution, but we want to be sure.

I know there's more, but that's the basic NICU update. I'm a little nervous that they're progressing so quickly, but thrilled at the same time. We just want to be sure they move at their own paces.

& on their names: N picked their first names out of 2 of his fav books, "Nolan" is after their daddy, & "Michael" is after both grampa's. (& for those of you wondering-- Valentin is pronounced: "Val-en-teen"). Sorry to keep you all in suspense, but I couldn't resist teasing you guys a bit longer! :)

Birth Story

Quickie update: the boys are both ok, & I'm sore, but doing ok as well. We're spending every waking minute we can in the NICU or pumping for the guys, so I will be in & out very erratically, but wanted to update while I have a sec (am waiting on a nurse. my blood pressure has been really crazy, so I promised I'd wait in my room this time until 5:30 so they can get a BP measurement before we go back to see the guys.)


Birth Story in brief: My water broke (& it was VERY obvious what it was! no doubts about peeing) at 4:35 am on Thursday morning. We got to L&D, called our OB (who got up & came in ASAP) & got a quick check on the guys. They were fine, but my blood pressure was through the roof. They let me labor until I was 5-6 cm dilated, then Baby B turned back down transverse & my rising BP made a c-sec neccessary ASAP. A half hour later, we were in the delivery OR, & baby A was born at 10:37 am, March 19, 2009, followed 2 minutes later by his brother. Both went straight to the NICU, & have been there ever since, learning how to breathe, eat & stay warm on their own. For now, I just wanted to let you all know we're doing ok-- a detailed update on the dudes will have to wait for antoher installment, since the nurse just left & we're going to kangaroo the kids.





Both boys have completely changed our lives-- they are the most perfect people I've ever seen, & the love I feel for them is beyond descpription. We're being very selfish with our time-- the guys dictate our schedule each day. N & I are doing everything we can to help them along, which at this point is offering kangaroo care as often as we can, & pumping like my life depends on it. Please keep the prayers coming! It's still early yet, & the docs are predicting around 4 weeks in the NICU.



N, me, & our beautiful boys. (baby A is on left, baby B is on right. oh, their names? stay tuned!)

Wedding Pics (just for fun)

Dancing, "grumping", & laughing with N at our wedding.

N carrying me over the mud, all smiles, leaving the church as husband & wife.

My very handsome hubby & me posing before the ceremony.

I've been a little rough on N lately, so I thought I'd indulge myself & post some pics from one of the best days of my life. These are pics of pics bc our photographer only works in film, so they aren't the best, but give the general idea. We wanted all candids, so other than the posed shots of N & me by the window, & the pic of my bridesmaids, she caught all the others on the fly.

With all that's been going on lately, it's become too easy to neglect the man who's helped me chase my dreams & never asked for anything in return. I just needed a reminder of how incredibly lucky I felt on our wedding day, & how lucky I am still.

Boys' Update

For those who haven't seen our update yet: the pre-e is slightly worse, but not bad enough to outweigh the prematurity issue yet so that's good news. The guys' NST was "a little nonreactive" but because we also had a biophysical profile done, which came out just fine, they're letting us keep them where they are for now. Blood flow through the placentas was still good (yay!!) We have a growth scan at our appointment with out peri. on Thursday morning, so we'll have a better idea of whether the pre-e is affecting their growth then. & then Friday we have another NST & appointment with our OB to check BP, protein levels, etc.
They told us today to start bringing our hospital bag to every appointment, as if any one thing gets worse (worse headaches, even!) they'll deliver ASAP to keep the boys healthy. Contrax are still here, & getting worse little by little. The cervical issues are now basically non-issues due to the pre-e, since the pre-e will likely speed things up regardless of an absent cervix. (so at least there's only 1 issue to worry about now-- there's a silver lining to eveything!)
I'm starting to get used to the idea that they'll likely be coming sooner than we hoped, & as has been pointed out-- they are in WAY better shape now than we were a few months ago, & when all is said & done we'll do whatever needs to be done to keep the guys healthy. Saturday will be 34 weeks, hopefully we'll be around til then!
I'll try & find a broader topic tomorrow, but I thought I'd update tonight. :)