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Thursday, October 7, 2010

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.

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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.


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Wednesday, October 6, 2010

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.
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Tuesday, October 5, 2010

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.
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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!

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Monday, October 4, 2010

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,
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Friday, October 1, 2010

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.


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