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.