I'm behind... catch up time, again.

I actually might be getting more organized when it comes to catching up. might be. No promises are made that I can continue to be organized.

Wednesday, December 22
My baby, the actual infant, turned 1 month old. Holy chiz on a chisel. (if you watch iCarly, you understand)

Thursday, December 23
Belle went for blood work with Nick. She had to get 2 sticks for 3 vials of blood. I guess her blood clotted quickly or something, I don't know.

Bug had an u/s on her bladder & kidneys and her pre-op appointment. The u/s went well, I guess, I don't have any results and don't know when I'll get them since the u/s was ordered by the neonatalogist and I don't really speak with him anymore.
Then we headed over to the Memorial campus (Levine Center) for pre-op testing. What a joke. Other than seeing the anesthesiologist, it was a waste of my time and money. They took her information... and asked me all the questions on the page - including when Norah's last menses was. Seriously. Then the nurse said she didn't have to ask if she'd fallen in the last 6 months b/c she wasn't 6 months old yet. Ummm... You can ask me if my 1 month old has had a period but not if she'd fallen in the last 6 months?! I think it's far more likely that she'd have fallen (she hasn't) than had a period. just saying.
A woman told me she was beautiful, absolutely beautiful, but looked nothing like me. Then she asked if I was sure she was mine. I offered to let her see my scar. Some people need filters.


The exciting part of Thursday (ok, for Nick & I) was doing Christmas with the girls. It was our first Christmas as a family of 4, and that Nick has to work. He'll be home Christmas night, but we're spending that with my parents & brother, so we did ours early. The girls will grow up always having more than 1 Christmas, and we're still trying to figure out how we want to do that. Thankfully Santa was kind enough to drop off their gifts early while we figure it out.

and now it's
Friday, December 24th, Christmas Eve
It's just me & my girls tonight. It's the first time, since Jordan was born and in the NICU, that I haven't gone out for Christmas Eve. Well, I went to the NICU in 2008 on Christmas Eve, but didn't go to any Christmas festivities with family. I'm very happy to be spending tonight with my girls.

well visit day

The girls had their well visits today - Jordan's 2 year and Norah's 1 month.
They're both growing and developing well.

Jordan's 2 yr stats:
36 inches tall. She's more than half my height. The girl is going to be taller than me by the time she's 12, I know it :/
34 pounds. wow. just, wow. She's gotten so big from the little 9lb 1.5oz baby I held only 2 years ago.

Norah's 1 month stats:
21 inches long. That's an inch in the month she's been on the outside.
9lbs 8oz. That's a pound up from her birth weight. I can't believe she's already up a pound. For that matter, I can't believe she had a 1 month well visit! She'll be 1 month old tomorrow. I just cannot believe it's been a month since she was born... it feels like only yesterday I was packing my hospital bag!

BELLY MONSTER IS 2!!!!!!!

My baby turned 2 yesterday.

I'm in shock.
My little girly is 2.
I love her so much and can't imagine a day without her in my life.
She had a great party with family that loves her.
She loved all of her presents and showed me them all again this morning.

Daddy put together a cheese/pepperoni tray:

she loves her Daddy!

and her sister (Mumma is just someone who brings the sister to her)

AND CUPCAKES CAKE-CAKES!

I can't wait to see how her next year turns out!




P.S.
I haven't made a Norah update lately, but there is one, so here it is...
Surgery is scheduled for the 28th of December. She was diagnosed with pulmonary stenosis at her last appointment with the cardiologist. It's a little set back, but knowing that it's there, we can watch it and decide on treatment, if necessary, down the road.

snots and coughs

both girls.

this sucks.

As if I wasn't paranoid enough about Norah's health, she gets a cold after being home for (less than) a week. THEN she went and didn't poop for well over a day and a half, and it was hard when she did.

As much as it sucks, I wouldn't have things any other way. My girls are home and happy and I can love them and care for them, together, just like I want to.

my baby came home

last Thursday night (12/2) after 10 days in the NICU.

It was AWESOME!

Jordan was so excited that we brought home "our baby" and then she continued to tell me all about it with a story about our baby, her baby sissa.

I'm nervous about having her home. Not about having a baby in the house, but the "what ifs" about her gut. I've never examined poop so closely in my life. Or analyzed a cry for so long after the crying stopped. Or jumped so quickly at the start of a fuss. I want her to have surgery to get it over with and get her back home as soon as possible. I want to wait on the surgery as long as possible, but know, in my heart, sooner is better than later in this case. The sooner we get it done, the sooner I stop worrying so much (HA!) and the sooner we can stop scheduling so many appointments so far away.

I'm loving every minute of having her home though. Every fuss and squeak and diaper change. Jordy doesn't like her being away from us at all and I spend a big part of the day sitting on the couch (or floor) holding the baby while Jordan plays. The swing in the living room is a blessing b/c Norah doesn't seem to hate it and Jordan can check on her at all times w/o my having to be holding her. I don't want to complain about holding her (I love it soooooo much! She's a cuddly baby!!!), but know that if this keeps up, in 2 months we're going to have a big problem on our hands.

Belly is so excited every time she sees Bug - it just warms my heart completely.

Right now, my life is more than I could have ever hoped for.

I should probably mention Nick...
He's doing great. He's really hands on and tries so hard to do it all. He's done so much for me the last 2 weeks when I haven't been able to do anything for myself without complaint. He brought Norah in for her first well visit while I stayed with Jordan in the waiting room - his first solo pedi appointment as a father, EVER - and was so proud of himself for remembering all the details.
I love my husband more than I thought I could. I know, I've said it before, and I roll my eyes whenever some woman says she loves her husband soooo much more after she has a baby (it's the hormones, people), but I do love my him more. Just like I love the girls more every day, I seem to love him more every day... and that isn't such a bad thing in the grand scheme of it all.

today sucks for me.

First things first... Norah is doing great. Jordan is doing great. Nick is doing great. I'm having a pity party.

I want my baby home. Every parent with a baby in the NICU wants them home, but I'm not focusing on them, I'm focusing on me and I WANT MY BABY HOME.
I miss her. I hate being away from her. I want to be awake at 2am calming her and holding her whenever I want, and whenever she wants. I want to tell her about the crazy things her sister is doing and watch her stare as Jordan dances. I want to be there for her awake time - it's getting longer every day, and I'm missing it. She's stuck in a bassinet, by herself, only getting attention when she's super fussy b/c she isn't critical like the other babes. If she's just fussing, but a baby across the pod de-sats, the nurses have to tend to the other baby and Norah is left to fuss. I know she'll get over it and I know they're doing everything they can for her, but I want her home. Home, where I don't have to rush to another baby every time an alarm goes off. Home, where I can soothe her and hold her and tell her how much she's loved without time constraints.

I just want my baby home. I want her healthy, of course, but I want to be a family of 4 at HOME. I don't want to have to schedule visits with her based on Jordan's schedule (or Nick's). I don't want to hear about her latest test results - I don't want there to be latest test results.

I want my baby. I want her healthy and at home. I hate that we're basically waiting on an elective surgery, that can't be done until her lung pressure decreases and that may not happen b/c of her VSD. What then? Wait until she's 18 to leave the NICU?!?!? This is how I feel right now.

I know how lucky I am to have a baby. BELIEVE ME, I KNOW. I'm tired of hearing how I should want the best for her, so her being in the NICU shouldn't be such a big deal. It is a big deal. I have a life that I need to get back to. My support system needs to get back to their lives too. Bills don't stop b/c you have a baby - they just get higher. I know how fortunate I am that she made it to term, was born, and is doing so well. I know b/c I was the one who went through the pregnancy and heard all the bad news first hand. All the more reason I want my baby home, leading as normal a life as possible.

I just want my baby.

Norah has arrived!

Norah entered the world, screaming, on November 22nd at 2:44 in the afternoon via cesarean section. She weighed 8lbs 8.8oz, was 20 1/8 inches long and had apgars of 8 & 8. We think 8 will be her luck number :)

meeting my girl:


up in the NICU:


I opted for the c/s when they estimated her to weigh 9lbs 12oz at my u/s on Friday the 19th. I wanted her to enter the world as safely as she could and felt that it was the best method of arrival to ensure that safety.

Norah is still in the NICU, but not b/c of her heart. Surprisingly (pleasantly!), she doesn't have an CAVC defect. She has 2 separate holes (and ASD & a VSD), but they should close or be close to closed by the time she's 3. She's there b/c she has malformation of her bowel and is awaiting surgery on Monday morning. Right now there isn't an emergency to get it done, but all the drs feel it's in her best interest (b/c of her other conditions) to have it now instead of waiting for a problem to present itself. They say it's urgent, but not emergent - whatever. Her liver is right where we thought it'd be (mid-line) and she has 2 spleens, one large and one small near her kidney - both appear to be working.

Y'all, she's basically perfect, expect for her insides.

She's been on room air since she was born. She was screaming while they were pulling her out and it was one of the most beautiful sounds I've ever heard. I didn't hear a sound out of Jordan until she was over a half hour old. I know that doesn't seem like a long time, but when you're waiting for any good signs, those seconds tick by slower than molasses and minutes feel like eternities. Norah's screams made me cry right away. I was nervous about feeling bonded to her b/c of the c/s and the fact that I knew she'd be headed to the NICU and I wouldn't get to see her or hold her right away, but those screams washed that fear away. I did get to see her and Nick held her and then she went upstairs to the NICU and I was up to see her a few hours later and it felt like we'd never been apart. I haven't gotten to spend as much time with her as I'd like, but I don't feel cheated like I thought I would. I make the most of the time I'm there and I know that she knows who her Mumma is.

Jordan is in love with Norah and I think she's forgiven me for not getting her a puppy. She gets so excited to see her and kisses her pictures and is just so happy about No-Nah. She starts calling for her as soon as we get to the hospital parking garage. She knows she has to wash her hands before entering N's pod and she runs right to her crib as soon as she goes through the door.

meeting her sister for the very first time:


first full family photo:


desperately trying to get rid of me so she can hug her sister:



I'm recovering very well. I was having contractions up until the surgery so that made me feel good about her lungs getting squeezed a bit. They said I was contracting ever 2-3 minutes while on the fetal monitor, but I felt the real contractions were more random than that. Surgery went well - I bled less than the typical patient, had less than half the staples of a typical patient, didn't feel much of anything and was up and walking within a few hours (I left the OR after 3 and was walking and up to visit Norah before 5:30).
Nick was great. He was very supportive when I needed him to be and he is really trying to make my recovery as easy as possible. The only time I got really upset with him (and I shouldn't have) was when he called the nurses station and told them I was hemorrhaging instead of calling my nurse directly like I asked him to b/c what happened was normal. I stood up, after sitting for over an hour and a half, right after having a baby and I gushed. I understand why he thought what he did, but he tuned me out when I was trying to tell him what was going on and I was mortified that nurses were rushing to my room. I cried. I made him feel bad and I didn't mean to and I'm sorry I did. I wish I could have seen it, at that moment, from the his eyes - both as a loving husband, and as an EMT, but I couldn't until later that night.

I was freed on Thanksgiving and Nick brought me home to surprise my family and Jordan. The only thing that could have made it better was if I'd been able to bring Norah home with me.

what I'm most thankful for -- even the headless guy:


ok, that's all for this post. I need to take some pain killers and crawl up to bed. I'm exhausted!

quickest of updates

Monday's BPP went fine. I go back tomorrow for a regular appointment.

this computer is being a douche nugget and I can hardly get on to do anything so hopefully that'll change soon and I'll be able to update when I get "real" news.

I still have an inside baby

Bugs lungs were not even close to ready. I'm sad that her lungs aren't ready yet, but I'm glad she gets more time to cook (b/c that's what she needs). I'm very ok with her still being inside.

The amnio was not pleasant. It was decided that the best spot was way up at the top of my stomach/uterus to get a sample, BUT the placenta is in the way, so the needle had to go through it. The needle going in wasn't bad, but Norah decided to try and kick the needle, so for 10 minutes there was a whole lotta pushing and rubbing and bouncing trying to get her to move her leg away from the needle. We got a very, very small (maybe.75cc) and bloody sample so they needed to try and get fluid from another spot. Near her face. The needle didn't hurt and we were able to get a large enough sample for the test within a minutes time.
I was supposed to hang out in L&D for a quick NST, but someone didn't want to do what she's supposed to do. A 20 minute NST lasted... and lasted... and lasted... and around the 90 minute mark, I got the results from the amnio (much sooner than expected), but Norah still wasn't reacting as she should have been. An hour after that, I got the news that the blood in the sample was fetal blood so I'd have to be monitored until Thursday night to determine if she was losing blood. I was sprung around 8:30 (a half hour earlier than I was told was the earliest I'd leave - WOOT!!), and Norah had been looking great on the monitor at that point for over 6 hours.

I'm really glad we didn't HAVE to get her out. I'd have loved to meet her and hold her, but, even more than that, I love that she's inside and her lungs are still developing.

And there's the update.
BPP Monday morning and regular appointment on Wednesday. She'll be here within the next 16 days - YIKES!

ummm

It's 6:30am. In about an hour/hour and a half, I'm going to go have an amnio to check Norah-bugs lungs and possibly start an induction if she's ready.

wow.

just, wow.

I want her to be happy and healthy and safe and if this is what it takes, then so be it. She looks good on the ultrasounds, but it will be easier and more accurate to monitor her on the outside.

I'm nervous and excited all at the same time. More nervous I think. I've never been away from Belly longer than over night and even then, I was only 10 minutes away. I don't know how long I could be gone. I don't think I'll get to see her at all today unless she decides to wake up really early, but the past 2 days she's slept until after 8:30 so I'm not holding my breath.

so that's that.

here's hoping all goes smoothly.

a late update

Norah-Bug is still cooking :)
Next week we'll estimate her weight and discuss how she'll arrive.
Her room is painted, mostly, just some touch up on the trim & putting the mouldings up left. Hopefully I can get her crib and dresser together before the end of next week.

Jordy has her last swim lesson tomorrow. I'm going to miss bringing her swimming with kids her age, but at least we have the membership and can bring her to open swims. We bought her big-girl mattress and she'll probably start trying it out this weekend or next week.

Not much of an update, but there isn't much going on right now.

marathon appointment day... wasn't so bad after all

I did black out during the fetal echo, so that was embarrassing, but that means Norah is big enough to put enough pressure on my blood vessels to make me pass out and that makes me happy.

1st appointment went well. I got a little annoyed going over my history, again, but it is what it is. I'm liking Dr. D more each time I meet with her and am feeling like she's listening to me and my concerns. She said she read over the dictation from Jordan's delivery and based on that, she's till leaning toward a c/s. I'm still leaning toward a vaginal delivery. I get that there is an increased risk of Norah getting stuck like Jordan did (upwards of 25% according to Dr. D, but my research says it's closer to <10%) and there's a risk of nerve damage (about 5% of the above risk of Erb's Palsy), but I don't want to jump on the operating table for a small risk if delivering vaginally is better for her. If I'm told that a c/s is the best and safest way for her to enter the world -- sign me up. As it stands now, if I go into labor within the next 3 week, I'll deliver vaginally, but I'll have another growth u/s in about 2 weeks and we'll discuss a c/s then.

B/c my appointment ran long, my nst was canceled (boo hoo hoo), but I still had the bpp scheduled at 1, so at least we got a break for lunch.

bpp at 1 went fine. She was moving and practice breathing and has plenty of fluid. The u/s tech was able to get me in with the cardiac tech early for my fetal echo so that was nice.

Fetal echo went very well. Well, except for the whole blacking out thing, but whatever. Her condition seems to be holding steady. There was no increased leakiness of the valves, organs are still where they're supposed to be (mostly) and she's growing.

The NICU consult is where today really shined. We were nervous about it b/c of our experience at WIH. I don't want my kid to need a NICU, but I'm happy about the one she'll be going to. They're very family centered, with toys in the waiting/family room, a small library to learn about a lot of the conditions/complications that caused your child to end up there, and - my most favorite part - parents are encouraged to attend rounds. You aren't banished off the ward. You're actually there, listening and learning about your child and, if need be, offering input as to what you think your baby needs. The pods were so serene, even with the monitors and visitors, and we never experienced anything like that at WIH. It always felt like chaos, a slightly controlled chaos, but chaos none the less.
At WIH (in our experience), the drs/nurses didn't care what the parents said, they didn't want parents to access their child's records (it HAD TO BE word of mouth - there were no charts for us to read), and getting information was like pulling teeth. They made us feel bad about everything from not delivering there to the fact that they ALWAYS called the wrong number when trying to reach us and, oh yeah, it was our fault when Jordy's nurse went on break and her covering nurse refused to update us on our child's condition. Our experience there sucked. Sucked big, hairy goat balls.

And... and... and...

If Norah is as "healthy" as we're predicting (everything can change once she's on the outside breathing air and her heart is working without the help of the umbilicus)... she could be in the NICU as little as 12-24 hours. I totally side-eyed the neonatalogist at that point, but he went on to explain that a baby presenting as she is, born at term, that shows no signs of bowel damage after her first feed, would only need to be observed long enough to get a cardiac consult in before they'd move her to either the special care unit or the general nursery. Granted, she could be there a lot longer, and I'm not getting my hopes up of her having a 12 hr stay, but it was really nice to hear that there's a plan, already in place, for her to be released from the NICU. We never had that with Jordan.
Oh, and if she does as well as predicted, and I do have a c/s - she'd most likely be released from the hospital before I would be. I didn't even know what to say to that! She would/could stay in the general nursery until my release, but technically, if he wanted to, Nick could take her home and leave me there to recover.

So there's todays update. I'm still so in shock over the NICU consult. I'm so excited that we know what has to happen for her to come home and that there's no reason to think she'll need a ventilator or special equipment or anything in order to come home. Down the line, she'll need to be medicated in order to help her heart/lungs until she needs surgery, but it won't be right away. She'll get to be a normal-ish baby for a little while and we'll get to hold her and love her and see her with Jordan AT HOME.

Today was a good day :)

changed my mind, she's staying in forever

yep, I've changed my mind and Norah-bug will be an inside baby forever.

I'm afraid of her entering the world.
Of what complications she'll have.
Of surgery.
Of the NICU.
Of her adjusting to the outside world.
Of all the other things mothers worry about.

I want to protect her forever. I want to protect both my girls. I hate that I feel like I'm getting less time with Belly b/c I'm spending it trying to learn about the "what-ifs" that might affect Norah. I hate that I have to limit my time learning about Norah's condition to spend time playing with Jordan. I hate going to day long appointments where I can't have Jordan with me, but love watching Norah on the ultrasound.
I can't seem to find a balance. I want to. I want so much for Jordan to be involved in everything, but I want to protect her from everything.

I found a chatboard for parents of CHD babes/kids and I'm addicted to learning others stories. I've reached out to a few parents who've delivered in Boston/children have had surgery in Boston and asked them about their experiences. I've been reading posts about hiding/exposing your other children to your heart babies and I don't know what to do. I WANT Jordan to see me in the hospital and to see Norah and touch her and know that's her baby too. I don't want her to see wires and machines and be afraid. I've been showing her some pictures from when she was in the NICU, but her wires were mostly hidden. They didn't have to intubate her (I don't know if Norah will need it), and she yanked out her iv ports as quickly as she could, so all you see in some of her pictures are some wires hanging out of a blanket and the occasional iv port that she hadn't yanked yet. I hate to show her the pictures where I'm obviously crying - I don't want her to think that being in the hospital is bad or something to be afraid of.

I hate this time in my life right now. I should be loving it, but I hate it. I love how fun and loving Jordan is. I love feeling Norah roll and kick. I love when Jordan pokes at my belly and Norah kicks her, and when Jordan is talking or singing and Norah goes nutso. I loved (as coincidental as I'm sure it was) that Norah woke up during the BPP when I mentioned Jordan's name. I hate that I feel torn between the 2 of them most days. I hate that I can't find a balance. I hate that I can't just enjoy the time I have left with Jordan being my only outside baby.

I want to have that normal pregnancy that I was finally having. I feel guilty for wanting that. I want to have a healthy baby. I feel guilty for wanting Norah to be something she isn't. I remember feeling guilty like this when Jordan was born. I wanted a little baby - she wasn't little. I wanted a healthy baby - she decided breathing was stupid. I loved her more than anything anyway (still do), and I love Norah already (no matter what her condition is) and I'm a shit-tastic mother for wishing they could be/would have been something they aren't/weren't.
I don't think I could love them anymore than I do (which, I guess is a lie, b/c tomorrow or the next day or the day after that, I'll realize that I love them so much more that day than I do right now) and I KNOW I can't love them less than I already do, so why am I so selfish to want the things that no one has any control over? It isn't fair of me. I guess I need to work on that.

kinda proud of me right now.

I put aside my feelings and was really open-minded when I talked to the new dr today.

I wasn't fond of Dr. D last week when I met her. It sent my head spinning in a million directions about what to do to change my care/Norah's care and what would be best for, ultimately, my family. I can deal with a dr I don't like if my baby is getting the best possible care and my big baby is well cared for when i can't be there.
So anyway.
I started thinking after the appointment last week, that she must have been flustered too (hopefully). She was handed a high-risk patient that she'd never met, never seen the history for, told the new patient has had xyz diagnosis, already had a CVS & genetic counseling & now a new diagnosis, oh and by the way, a rough delivery of baby 1 -- now go in and talk to her and consult with the cardiologist.
It isn't easy for me to forget that first impression, and I'm sure that's the same for many people. I've spent the week just remembering how flustered and pressured I felt at the meeting. I didn't like that she didn't hear what I was saying and that she disagreed with me or my care to date or my hopes for the remainder of my pregnancy. I tried very hard to move past it to be comfortable to talk to her today and to really be an advocate for myself and Norah and not to be the doormat I felt like last week.

Today I had a bpp and she came in to touch base with me and see if I had any questions. She seems to have taken at least a few minutes to review my history and we are (tentatively at least) on the same page. I don't hate her, I don't love her, but I *may* like her, and I am feeling more comfortable with her as my doctor. She is scheduling an induction to get me on the calendar, but (hopefully) I made it clear that I did not want to be induced unless I was progressing and was a good candidate for it. I do understand the concerns about going overdue though so I didn't argue with getting on the calendar... I just hope I go on my own before that.

It's 5am

I feel like I had a nightmare.
Jordan woke up screaming about 20 minutes ago, but went back to sleep shortly after.
I missed her so much yesterday.
I just want to go in her room and get her - she doesn't really need sleep, does she? Today, I've got errands to run & she's going to have a Belly-Daddy morning so I can get them done quickly (they involve trying on clothes :/) and getting home to her as fast as possible. Then I have a drs appointment while she's napping, but I have to leave before she goes down.
Can it be Friday yet? I just want to spend the day with her, and love her and be grateful that I have her here with me.
She's snoring away peacefully right now, all bundled up in her blankets and all I want to do is snatch her up out of her crib and hold her. I know she'd never go for it since snuggling can only be done on her terms, but I can't help it - I want to snuggle with my girl.

I felt like I had a handle on the situation. Now, I feel like there are so many unanswered questions and I don't think I'll be able to get straight answers.
I'm starting to consider delivering in the hole I hate if I can stay with her the entire time she's in the NICU. And by hate, I mean hate, loathe & despise -- honestly, I'd rather die than deal with that hospital, but if I get to be with my baby and she'll still have her surgery in Boston, maybe I can deal with it.

It's so strange how calm I feel about Norah's heart. It's like the other shoe has finally fallen and, yes, there are things to deal with, but we were kinda prepared for this. For the longest time, we weren't going to be able to know what was wrong until after she was born and I wasn't going to be able to deliver at *my* hospital and there were so many uncertainties. Then we had a little window of a normal pregnancy. Now we're back to a form of "plan A" and it isn't as scary as it was, especially since she has a problem that can be and has been diagnosed, and we have a plan of treatment. I'm still learning as much as I can about her diagnoses, but it's a lot easier to learn when you know exactly what the problem is, instead of a blanket problem where no one may never know the exact cause. That's oddly comforting. Knowing what it is. Knowing she can get treatment and lead a full, happy, healthy life.

I want a healthy baby, but isn't what's important for her to be able to grow and be happy & healthy for a lifetime? Maybe this hurdle will be the only one she has in her life, maybe it'll be the first of many. Isn't it my job to make her feel loved and secure in her own skin and confident in herself that all these hurdles are nothing she can't handle?

I just want my girls to be happy & healthy & confident & know how loved they are. I'm going to do everything I can to make sure that happens.

I'm just c&p'ing b/c I can't type it again right now

the appointment.
We had another fetal echo and met with the pediatric cardiologist, who then did a 2nd fetal echo to see everything for himself.
Dr. F (the pedi cardiologist) was great. We both really liked him and he took the time to talk to us about what he was/wasn't seeing and then he drew out diagrams and made notes for us so that we could better understand what we're dealing with.
Her heart is enlarged, but not as much as I was led to believe yesterday. Dr. F said that yes, her lungs are slightly smaller than typical, but they're still in a "normal-size" range. Her heart is working, but not how it's supposed to.
Her inferior vena cava is small, but the vein beside the vena cava is slightly enlarged and picking up the slack so he doesn't see that as a problem.
Norah has some heterotaxy (some organs *may* be disoriented -he doesn't see any, but couldn't see her spleen, so it may actually be missing or in multiple non-working pieces -but he's basing that part of the diagnosis on her heart flow/rhythms & valves) and a large hole in her heart - an atrioventricular canal defect. She'll require some NICU time after birth, but there's no telling how much until we see how her heart works when she's on the outside. She'll need surgery to repair the hole by the time she's 6 months old. Dr. F said from what he's seeing, she should be fine until she's 4-6months before needing surgery, which is ideal, but again, it's something we have to evaluate after she's here. Surgery will be at Children's in Boston.
I'll deliver at either UMass or Brigham & Womens - right now, my care is being transferred to Umass, but I'm not sold on my new OB. She didn't seem to like my opinions (like not wanting to schedule a c/s based on Jordan's shoulder dystocia & being due 2 days after Thanksgiving o_O) and seemed to feel like it had to be her way or no way (Nick needs to be at appointments, whenever she can 'fit me in').

I see my OB tomorrow to say good-bye and get my records. I'm back at UMass on Tuesday for a BPP (which Nick just asked if it was the dildo cam b/c he thought bpp stood for bionic penis probe -- I love my husband, he can always make me smile!), so I have to cancel the NST with the MFM I saw yesterday.

I just need to vent/cry before I explode

WHY can't I have healthy babies?!? I should just be grateful that I can a) have babies and b) that they're born, ALIVE, but why can't they be born healthy?!?
Jordan was mostly healthy, except for the whole getting stuck thing and congenital dacryocystocele and then the not being able to breath. Norah doesn't seem like she's going to get that chance.
I want to have both my babies, at home, with me, after Norah is born - not one at home and one God knows where while I try to shuttle back and forth.

I'm blessed that Jordan is a happy, healthy, thriving toddler. I'm blessed that Norah is still growing and looks healthy at the moment.
BUT WHY CAN'T THEY JUST BE HEALTHY?!? WITHOUT ANY PROBLEMS- BIG OR SMALL?!?!

I just want my baby to be ok. To be healthy. I never thought that'd be asking to much. I know I shouldn't complain b/c of all the things that she IS, but I can't help but be sad and upset.

well, that sucked

Bug has something wrong with her heart. I don't know what exactly or how severe it is/could be. It's enlarged (the right ventricle) and taking up about 1/2 of her chest cavity. The blood flow is off and blood is mixing that shouldn't be. It could be a valve issue (tricuspid & pulmonary were suspected) or possible tetralogy of fallot or who knows what.

I have another fetal echo tomorrow at 1pm. Hopefully we'll meet with a pediatric cardiologist at the same time, if not, we'll find and meet with one within a week.

For now, she's growing and her heart is working - just in it's own way.

today sucked, but here's hoping tomorrow is better.

t-2hrs until the fetal echo

I'm nervous.

I wasn't, well, I was, but not really b/c I felt like it's just a size/position thing. Now, I'm nervous. My mother & Jordan will be in the waiting room, coloring and watching iCarly on DVD b/c my mother & Nick don't trust me to go by myself.
They were both really upset that I was alone when Norah got the cystic hygroma diagnosis.
I feel more nervous now than I did when I went for the NT f/u. I think it's b/c I can't know what they're going to tell me and the NT taught me that.

here's hoping all is well!

what I've been thinking about

my mom.

This started before the ultrasound on the 1st. For some reason, I was thinking about when my brother would get sick and be in the hospital (it's about that time of year that the poor kid would be in the hospital for either for his birthday -in May- or around Halloween b/c of asthma/allergies every year) and when Belle was in the hospital when she was only 5 weeks old.

I realized while I was at Hasbro with Belle how often my brother was in the hospital and how often my mother was with me during that time. I remember telling her I didn't know how she did it b/c there was no way I was leaving my baby in the hospital by herself. She said, "I had another child to take care of."

I'll never forget her saying that.

God knows how many times I've felt (and voiced said feeling) that my brother was her favorite and I can't fathom how much that must have hurt. I'm sure she knew it was just me being frustrated and annoyed and jealous of who knows what and lashing out, but geez! I never thought about how that could hurt her or that it'd be something I thought about years and years later - what kid does?

When everything with Norah started, I had another child to take care of.
I have nap and bed times to cry and worry in. I can't just stop and hide in a hole until I know everything is going to be alright, no matter how much I want to. I've had to take care of Jordan and love her and hold it together for her, so that she can continue to grow and be confident in herself and our love for her.
I couldn't have done it without my mother having told me she had another child to take care of. It was like she was giving me permission, long before I needed it, to take care of all my children in the way that they'd need me to. All those visits to see my brother in the hospital - I remember thinking it was so that I could see him, I never thought it was so that my mother could be with her son - like he needed her to be, like she needed to be. I hope I can someday be as strong a mother as she was then and is today.

I'm nervous about Norah. I really don't know what to expect tomorrow at the ultrasound, but I do know that when I'm done, I have to come home and be Mumma to Jordan.

here's hoping all is well,

what to say, what to say

Jordan is doing well. Her eye is still drift-y, and she's in melt down mode most of the time, but she's fun.

Norah is still inside (where she should be!!) and we had a 3d u/s last week, a growth u/s today & will have a follow up u/s with another MFM on Tuesday. Something about her heart isn't looking right. It's fluttering or flapping strangely and b/c of her size and position (she's head down already) it was hard to get a good look at the regular ob's office, so it's off to the specialist I go (hi ho hi ho hi ho). I'm nervous, but not nervous at the same time. I'm glad it was caught and we can investigate it before she arrives.
Part of me is afraid. Afraid that *this* is what caused the cystic hygroma in the first place and it's to late to do anything about it. Her other organs looked good though and there were no hydrops. I'm hopeful that it was just a size and position problem.
Size-wise she's in the 66th percentile, weighing in around 4lbs11oz. IF she were to gain .5lb a week from here on out, she'd be about 9lbs like Jordy was. I'm hoping she's smaller. Selfish, yes, but I want a little baby (who's healthy & doesn't get stuck, but I'll settle for one that's *just* healthy).

And now, I must go to bed. There's more I want to say, on a different topic, kinda sorta - it's about a fear and a realizing, but I just don't have the energy to get it written out as well as I'd like.

amblyopia

Jordy got an "official" diagnosis this past Tuesday. Her right eye is still drifting and getting stuck, she's favoring her left eye, BUT she can still bring them together at near distances so that's good. We go back in January unless it continues to worsen for her next check.

My poor baby and her eyes :(

Belly had her first swim class this morning

I'm not expecting her to know how to swim in 5 weeks when the class is over. I wanted her to have the class to get used to the water (even though she's a total water baby already), and interact with some kids close to her age.

She loved it! From the moment she saw the pool, she wanted to go in. When she saw her bathing suit...OMG! She was all about calming down and getting changed and back to that pool as fast as she could. It was adorable.

The only tantrum she had was after class was over, and I gave her a little shower, when I turned the shower off. Belle was like "WTF Mumma?!? First I have to leave the pool and now I can't play in the shower anymore?! This is not cool!" She calmed down quickly though and we left without any more meltdowns.

I can't wait to get her back into the pool :)

Belle's birth story

umm yeah, it's a little late. I've always wanted to get it written, but never really sat down to do so. I've talked about it plenty of times on the interwebz and in person, but I want it actually written somewhere. So here it is....

This is for you Jordy-Belle -
After weeks and weeks of contractions - seriously child, I started having contractions around 28 weeks and you weren't born until 40w1d - my water finally broke on your due date (at 8:30pm). I wanted you to be born on your due date for a couple reasons. Selfish reasons. It was your great, great grandfathers birthday and your great, great grandmothers death day. Memere & Pepere are very much missed and loved and I wanted to have that connection to them again. Like I said, selfish, but I can admit it. You wanted your own day, and you deserve your own day - I'm glad you got it.

Anyway (this is why I never get this story written out)!!

We left for the hospital around 10/10:30, Daddy dropped Cooper off at Grammy and Grampa's and came to get me. There was a snow storm coming in and we decided that waiting until morning to go in would be silly. Oddly enough, after my water broke - no contractions. It was the longest time I'd been without contractions in 12 weeks. When we got to the hospital the nurses couldn't believe I wasn't having any - they'd seen me so many times over the last few weeks for NSTs and labor checks with contractions 3-5 minutes apart for hours that no activity was just bizarre. I was put on pitocin and they let me try to rest. Pitocin is the devil.

Oh, let me back up a second -- we were lucky we got to the hospital when we did, with a couple hours, the place was packed. They had to cancel all scheduled inductions and c/s and if we'd waited until morning, I wouldn't have had a room. You were born during a slew of snow storms.

Back to pitocin being the devil. After over 12 weeks of contractions, I thought I'd have a good handle on what I could do to get through them. The pitocin messed me up. I responded well in that I was having contractions, but poorly in that my blood pressure and pulse were erratic so I was confined to the bed. I just wanted to walk around and stretch a little, but I needed to be monitored.

Finally, I asked for my epidural when the contractions were just to much for me. I was shaking the bed and crying and couldn't get comfortable at all - I even woke Daddy up (don't worry, he got lots of sleep during my labor). Only 10 minutes before I felt fine, but between the pitocin starting the contractions and my body deciding it was time to have some natural ones, I just couldn't do it. I was so upset when I was only 4cm dilated and asking for an epidural, I really wanted to make it to 6 or 7.
Daddy was texting Ojiichan at the time and actually thought I gave a shit what they were talking about - I didn't. I was hurt that he cared more about that than taking care of me when I needed him - quite frankly, I still am. There are a lot of things he did that night/day that hurt that I'm still getting over, but they aren't really important (even though I'm sure I'll include them here). The epidural was bliss. I'm not allergic to it. That is amazing in and of itself, and that it worked... BLISS. I slept for 2 hours after I got it and started to feel ok. I was up and down for the next few hours, but Daddy slept until nearly 9am when it took me a good 10 minutes to wake him up b/c Grammy & Grampa were there to visit.

Your Grampa is an ass. I just want you to know that. When they were there, my epidural was getting low and I was feeling a lot, but the pitocin was dropped to nearly nothing b/c I was having natural contractions again so it wasn't as bad as when I did get the epi, and Grampa watched the monitor and felt the need to tell me every time I was having a contraction. Um, yeah, thank you Captain Obvious, but I'm well aware of the contracting uterus in my body. Apparently, he thought it was so funny when he did it to Grammy when she had us that he thought it'd still be funny... it wasn't.

At 10:30 am, I got the all clear to push. I was ready! My nurse was convinced you'd be here in about an hour and I couldn't wait to meet you.
I pushed.
And I pushed.
And I pushed.
And Daddy tried to nap.
And I pushed.
And I pushed.
And Daddy complained about being hungry.
And I begged to change positions b/c the epidural was empty and it hurt.
And I pushed.
And I pushed.
And I asked if it was to late for a c/s only to be told you were "right there".
And I pushed.
And then, even though it isn't common practice, and they were leery about doing it, my epidural was refilled and they tried to get me to rest (it was around noon). The problem with getting or re-filling the epidural when pushing is that you can't push as effectively, but I was exhausted. I had the oxygen mask and kept blanking out while pushing b/c I couldn't rest through any of the contractions. It hurt more to rest than to push and exhaust myself and b/c of that I wasn't pushing or progressing as effectively as I had been when I started pushing.
I started to rest a little and pushed through every other contraction. My right foot fell asleep and I desperately needed to shake it. I couldn't lift it, but I could slide it off the bed and every time I did, Daddy or the nurse would put it back and tell me I couldn't feel my foot, but I could and it was asleep and that's annoying.
I pushed.
And I pushed.
And Daddy ignored everything I said to him.
And I pushed.
And I pushed.
And Daddy left. And I've never felt more alone in my life. He said he just need to get out of there and he left.
And I cried. And the nurse asked where he was going and what he was doing and I cried b/c I just didn't know.
And Daddy came back and mutter some half-assed apology about being upset that he couldn't do anything to help me, but really, I didn't care then and I don't care now. I don't think I'll ever forget that he left when I needed him most.
And I pushed.
And at some point way more people than should have been in my room were.
And I pushed.
And the nurse was pulling my legs back as far as she could and she was on my stomach pushing you out while I pushed.
And I pushed and she helped.
And I heard someone yell 13 - 32.
I knew you were born.
I tried so hard to open my eyes and see you, but they were swollen. There was yelling for the pediatrician b/c he wasn't there yet. He came running in and slipped on something and got tangled in the curtain yelling that he was there. I could kinda see you across the room and I knew something wasn't right. Why did they take you away from me? I was supposed to hold you while they cut the cord. And why was the pedi flopping you around (it was just your arm, but I didn't know that at the time).
And you started to fuss. I told Daddy to go check on you - I needed to know what was going on.

You got stuck on the way out. You presented with spontaneous shoulder dystocia and weren't doing so well when you made it out. Your 1 minute apgar was only a 1, but your 5 minute was a 7 an you were pinking up and seemed to be doing well. Daddy showed me some pictures of you and I couldn't wait to hold you myself. I got stitched up while they kept an eye on you.

About 45 minutes after you were born, I got to hold you for the first time. Less than 10 minutes later Grammy and Grampa were busting down the door to check on us. I guess there were a lot of pages to my room b/c of the situation. I remember the nurse asking if it was ok to let them in b/c the room was a mess and I said it was fine. I shouldn't have. My eyes were still really swollen and I didn't know how bad the room was. My blood covered it. The pedi slipped in my blood on the other side of the room, and there was blood on the walls and the window. It wasn't a pretty sight. I knew they were excited to see their granddaughter, but I never thought about how they'd feel seeing their daughter's blood everywhere (ok, I didn't know about the blood, but I never thought about how they'd feel seeing their daughter in rough shape) so I ok'd letting them in.

You were beautiful and perfect and I loved you instantly. I cried when I held you and nuzzled your dark, dark brown (just a shade or 2 lighter than black) hair and saw your pretty blue eyes. You were so big and so tiny all at the same time. You were so clean. That sounds silly, but you were so clean, w/o a bath, and everyone commented about it. I'm sure it was from all the rubbing and handling when they were trying to make sure you were alright, but even the nurses and the drs that took care of you during that time made comments about how clean you were. And you were feisty almost instantly - just ask Grampa about your first bath - and let us know what you wanted and how you felt.
Baby girl, I love you so much. I'd do it a million times over again for you. You had some breathing complications that ended up putting you in the NICU, but that wasn't until a couple days later. I'll write about that another day, but for now, I'm all cried out and tired and don't want to think about how much your NICU stay hurt. It was only a few days, but it was awful. The important part is you're happy and healthy and growing like a weed...

And I love you.

I love you more today than I did yesterday and I'm sure I'll say the same tomorrow.

birthday pictures :)

yep, bought a car seat

I bought Norah's convertible car seat today. The Britax Roundabout 50 Classic in "Kathryn" from Target.
Holy crap people, there will be a baby using the car seat in my dining room.




EEP!
This is getting real. Really real.

I'm assuming I passed

I had my glucose tolerance test on Wednesday, September 1st. Nothing says 'Happy Anniversary' like drinking 8oz of sugar. I had planned to post after getting the results, but since I haven't gotten them, I'm assuming I passed. I know, I know - everyone knows what happens when you assume. Guess what, I'm assuming anyway! I had far less of a reaction this time than I did when I took the test with Jordan. I got a little nauseous and dizzy, but nothing a few deep breaths didn't take care of - with Jordan, I was a scary sight during that hour wait.

It's so strange to me that Nick & I have been married for 3 years. We have an almost 2 year old and another on the way. I don't know how this happened. I mean, I know how it happened (and if you read this, then you know how Bug came about too), but it just doesn't seem like we've even known each other long enough for it to happen.
We didn't even exchange cards, and Nick knows that's a big deal to me, but it wasn't this year. We just ran out of time. He bought me Swedish Fish though and let me nap so I guess that means he does love me. Hear that, Norah, ME. He loves ME, which is why he bought candy I like and not candy YOU make me want.

Anyway, back to my girls.
It's getting much easier to call them my girls and more and more I feel like Norah will be here in November. I'm 28w today and it's all feeling real again. All the hopes and wishes for her are coming back and seem attainable again. It's such a great feeling. I'm measuring a little big, but she "feels a little small" so at my next appointment we'll schedule a growth ultrasound. I'd really like to understand what "feeling small" means in the world of obstetrics. Jordan "felt small" too, and she weighed 9lbs 1.5oz at birth... that's not small.
Speaking of Jordan, she's just fun. Nick loves spending time with her and it shows. She's picking up random words and has an opinion on everything. Today's word was butterfly (bub-bub-bye) and she must have said it 1000 times. The other day she started kicking and whispering kick, kick, kick, kicking, kicking, kick, kick, (yell) KICK! It was so hard not to laugh at her since she was so proud of herself. She learned share and sorry last week - and she was sorry to everyone/thing she could touch for 10 minutes. The poor dog nearly lost some teeth b/c she had his jaw telling him "sorry" and kissing his muzzle.
She got new shoes recently - pink, glittery shoes. She loves them. She loves all things pink. She's such a girly-girl and a tomboy all at the same time and it works for her. I have no idea how to raise a girly-girl, but she's happy, healthy, loving, confident and limit-pushing so I must be doing something right (so far anyway).

That's about it I guess. Jordan refuses to stop growing up, Norah is growing well and Nick & I have been married (barely) over 3 years now and are still growing up.

one more post about etsy and the girls

they're getting slippers for Christmas.
I ordered from BugsandDaisies this time. A custom-ish order and they're awesome. I love them. They're perfect for my elephant and my buggy babies.

:side note: do you see how little those bug shoes are?! It's hard to believe that Belle's feet were ever that little and that Norah's will be.

etsy purchases

I've been spending a lot of time on Etsy lately.

I ordered a hospital hat for Jordan, and loved it. Unfortunately, that seller has been taking a lot of time away so I had to find a new one if I wanted a hat for Norah.

This time, I took a chance and ordered from Addie Kakes Kreations. Jordan got a t-shirt and Norah got her hospital hat. Overall, I'm extremely pleased with the transaction. Andrea was very quick to reply to my questions and did a great job keeping me up to date on the status of my order.

Belle's shirt:


Norah's hat: