Pediatric Cardiac Specialist Appointment Set

So they finally called this morning and after figuring out the mix up  and we were able to get the appointment set for March 17, 2011 at 8:30am. It's all the way down in Minneapolis, not too thrilled about that... by any means. Especially since it's with the very same group that has a clinic less than a mile from my house.

I am also not thrilled about the wait. Although I guess 24 weeks is a better time to view Isabella's heart, so she'll be half way between 23 and 24 weeks. In the mean time I have no appointments set up. Nothing. Arg!

I need to find some serious ways to pass time efficiently and to not worry so much in the mean time. Any hints or tips would be appreciated.

21 weeks...

Okay, this last week has been by FAR the longest week yet. It crawled by. However, the good news is, I am feeling her move much more. So much that she even wakes me up at night. I am quite happy with that!

I think I look smaller this week, but I am going to attribute that to the fact that I am losing weight left and right. I went from 10 lbs below my pre-pregnancy weight last Monday to 13 lbs below it on Thursday. The GD diet is to blame for the initial loss, but I think stress is playing a bigger role in the more recent loss. Even my face looks thinner to me. Of course the OB isn't worried about it at this point, she says that from 20 weeks on I should be gaining weight now. But I just don't see it happening. As long is Bella baby is growing as she should I am fine with the weight loss, even happy about it, and so far it looks like she's right on target.

As a side note, I am at about the point where I need to go but *smaller* maternity clothes. These ones, that fit fine before, are baggy and my pants fall down. >.<

And so it begins...

I couldn't figure out why on earth I was up at 5:30 am on a Sunday, but I know now. It seems there is a baby girl playing jump on mommy's bladder.

If there were ever a reason to be awake at an odd hour (for me) and smiling about it, that's one of the best in my opinion. And so I say to her... Good morning my sweet Isabella, I love you!

Something to be said for positive thinking.

Abby has proven over the past... year... I think it's been a year-ish, to be a very positive influence in my life. I would definitely say I am quite lucky to have her as a friend. She is so supportive seeming to know exactly what to say and when and I sincerely appreciate that.

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  • Abby Flaten Frustrating!! The one thing I see as a positive in this is that baby is okay while she's cooking and growing inside you at this point. I hope they get you the appointment and answers sooner rather than later, because no doubt you need and deserve them - but at least the delay isn't hurting her, right?
    

    13 minutes ago · 
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    Michele Whipps Anderson I believe it isn't and she is getting SO active. Of course then I worry she's going to kick the bad part of the cord. rofl. I can't win for losing. But each kick is a reassurance. I really need to find more positives and focus on those. Easier said than done! lol
    

    7 minutes ago · 

My sincerest thanks to you for helping me look at the silver lining when the clouds seems too thick to see any. It helps both the baby and I a lot, that that means so much to me.


Thank you!

Miscommunication

If I hadn't received a call by yesterday for the appointment with the pediatric cardiologist I was told to call to make sure an appointment got scheduled. So, no call... I called. The scheduling line was of course closed, but beyond that there was some sort of miscommunication between the Mercy Clinic and the Abbott Clinic and it looks like the appointment "might" be set up already, but it's not clear.

I will never understand why a clinic can't just hand you the referral with and needed instruction and allow you to set up your own appointment. It seems like that would make a lot more sense than this.

So, for now we "just hang in there" still and wait until Monday to see if we have an appointment and if so, when and where.

I've spent the past 5 days trying so hard to distract myself from all of this stress. I am going to run out of distractions well before I know what is going on. Sorry for the rant. It's just such a mess. I feel as if everything is up in the air at this point. :'(

No news today

And in my opinion.. for now... no news is good news. I think I've had about all I can handle for news this week!

Now, at the cardiologist appointment... I am hoping for good news. The problem is minor, or it just doesn't exist, OR it will resolve itself before birth.  I can hope right?

So, back to crocheting her gender neutral blanket that I started before I knew what she was, so I can get started on the ones with pretty colors for her.

Oh, and actually, while it isn't news, she let me know just how strong she's getting by kicking the stuffing out of me last night. I say kick away Bella baby, get that exercise and be nice and strong.

More bad news.

So, I didn't get the second U/S, the doctor made it clear that it wouldn't change anything. She just kept telling me how sorry she is that this is happening and asking if I'm okay. No, I am not okay. I'm not even a little okay. Then she told me something the Peri's office didn't happen to mention.

Velamentous cord insertion is an abnormal condition during pregnancy. Normally, the umbilical cord inserts into the middle of the placentaas it develops. In velamentous cord insertion, the umbilical cord inserts into the fetal membranes (choriamniotic membranes), then travels within the membranes to the placenta (between the amnion and the chorion). The exposed vessels are not protected by Wharton's jelly and hence are vulnerable to rupture. Rupture is especially likely if the vessels are near the cervix, in which case they may rupture in early labor, likely resulting in a stillbirth.

Early detection can reduce the need for emergency cesarean sections.^[1]

Now, not only do we have HRHS, but we also have velamentous cord insertion. This pregnancy just keeps getting  more and more complicated and risky.

I am so pathetic I asked if there is any way they could have me admitted to the hospital for monitoring of Isabella, she said no, they wouldn't even consider it.

So, here we are, she has a bad heart, we have a bad cord. The cord could be an issue at any time, especially during birth. It could lead to her being stillborn. The heart "shouldn't" be an issue until I have her. How do I keep my sanity through this? I've lost 3 more pounds since the Peri visit, which means I am 13 pounds under my pre-pregnancy weight at this point.

Regular OB appointment today.

I have to wonder how it's going to go. I checked my "MyChart" to double check the time of the appointment, it's at 10am. However, while I was checking it, I noticed that they also have the results from the Peri now. I wonder if they're going to release me as a patient, or keep me. I am hoping, since Isabella has moved, that I can ask Dr. Greves very nicely to take another peak at her heart and send it over to the Peri.

During the initial scan the little one wouldn't move for her, but she's been kicking the stuff out of my left side today, which means she moved and maybe, just maybe they can get a better look at her heart. Maybe I am foolish being hopeful that a second look might tell a more hopeful story, but maybe I'm not. I know that in the position Bella was in, they were having problems getting a good image of the right side. Maybe, just maybe the new position will show something that is even a little bit better news.

So, my hopes are...

A. Dr. Greves will agree to and give a scan today at the appointment.
B. That there is good or at least better news concerning peanut's tiny heart.
C. Even *if* there isn't better news, I can better prepare myself and let go of that hope that the issue was position based.

I really think this will be a reasonable request and all I can do is pray that she will agree to try.

So, if you read this before my appointment, please pray that my hopes are granted, especially the better ones in the bunch.

CaringBridge Website

I am not 100% sure of the benefit of the CaringBridge website. But it is certinaly there for cases like ours, so I signed Isabella up for one. For now, the two are very similar until I get more familiar with the other. But, it's there if you'd like to check it out. http://www.caringbridge.org/visit/isabellamichele And there is also a link to it on the left sidebar.

If you're a mom who has used CaringBridge, maybe you can help fill me in on what it's about.

How do you cope with something like this? And, naming Peanut.

I know there is a real chance that this sweet innocent peanut is going to be born and need multiple surgeries, starting right at birth. I know that someday, to increase her life expectancy she is going to need a heart transplant.  I have all this information, but I can do nothing but wait.

I can't get it off my mind. I love her so much. I didn't care if she were a boy or a girl, my only hope was that she was healthy and I am scared to death about what all of this means. What the overall picture will look like. Will it effect her development? Will she be living with a lot of pain? Can she play like normal kids? I am so worried for her.

I know no matter what, I will do what she needs me to do to help her. There is no question in my mind that I will endure and love her to no end through whatever bumps and twists this new journey takes us on. I just wish, I pray, I hope, that it was a simple mistake. That it was because the tech couldn't get a good angle. Or, even if there is a problem, it isn't as severe as they think it is.

I love this child, I love all of my children. And just the thought of even a chance of losing one, is so overwhelming. I don't know how other's have done it. But God, please grant me the strength to get through this for my little one.

It's unfortunate that my first name choice is so popular because of a movie. This is a name I've had in mind since before we had Emma. Seeing as what we are going to be enduring, I am going to use it, despite it's popularity. The original plan was to name her Ava, but as things change, so did our name choice.


Isabella \i-sa-
bella, isab(el)-la\ as a girl's name is a variant of Elizabeth (Hebrew) and Isabel (Hebrew), and the meaning of Isabella is "God's promise; God is my oath".



Michele \m(i)-che-
le\ as a girl's name (also used as boy's name Michele), is a variant of Michaela (Hebrew) andMichelle (French, Hebrew), and the meaning of Michele is "who resembles God?".

So, her name will be Isabella Michele

If anyone is going to be there and help us all through this, it is God and as a family, we all need that support. 

Hypo-plastic Right Ventricle Syndrome (HRHS)

This is what they think Peanut has at this point. I am really hoping they're wrong. But if not, I am bound and determined to handle this like a champ. (God(s) give me strength!)

They want me to deliver at Abbott Northwestern Hospital in Minneapolis, which is attached to Children's  Hospital via tunnel. When the baby is born they will take her right away for surgery. I don't yet know what that will entail at this point, but in 3 weeks when I see the neonatal cardiac specialist I should know quite a bit more.

I haven't yet read up on HRHS, I just discussed it over the phone with the genetic counselor from the Perinatal Clinic. She is just awesome and was very reassuring. She is, however, suggesting I have an Amnio done to check for other possible defects. I will agree to that, but not until the baby is completely viable, so, I figure no sooner than 30 weeks. The genetic counselor said that it is completely fine to wait, and wont harm the baby in any way. I believe the risk of miscarriage with Amnio is about 1 in 200 babies, but waiting until she is viable makes loss significantly less likely.

I am trying as best I can to relax and not worry too much about this. I know that could affect the baby as well. I did however want to update those who want to know.

17p week 4, Peanut's Heart and other things.

Okay, since this morning started off with "Put your elbows on the table" which I now laugh when I hear... I'll start my update there. I had the same nurse as last week, thankfully, she is great with the injection. It didn't even hurt and I am icing it as I write this to prevent swelling as instructed. We'll see if I get sleepy soon. I am hoping these side effects are going to taper off as my body adjusts to the extra progesterone.

Next on the list, Peanut's Nana Pat sent me a pic this morning of the new blanket she picked up for my precious sweet pea. It is SO cute and looks as soft as it is cute! I can't wait to get my hands on it to feel lol! (Yeah, I am a goofball, it's a coping thing.) Might as well post that picture here! I am full of good ideas this morning...

Peanut's new blanket! <3 Nana <3

The next thing I did is ask someone I know, who was born with and has thrived despite heart problems, to come over and talk with me today. I am hoping her peppy, spitfire self can help give me some perspective and some hope for this little one. Maybe I am worrying too much, but, is there really such a thing when it comes to something with so much potential to be utterly life altering? Especially with so many unknowns.

And, last but not least, on the subject of unknowns. I put a call into the Peri's office this morning. I asked to speak with either the Peri or the genetic counselor about the news from yesterday. I realize that from the moment the Peri walked in and said "There is an issue with your baby's heart." I went into survival mode and glossed over, I tried to listen, I looked at what he showed us... but I am still so unsure. While my goal in this is to find out more and feel better and more hopeful with the situation... I know there is a chance it could go the other way. But on the 50/50 odds I am giving the news, I am hoping it helps me cope with this better and be able to better maintain my sanity. The less anxious I am, the better it is for the baby. Right?

So, I think that is my update so far. If/when I hear back from the Peri's office.. I hope to post some more complete and hopeful news here on Peanut's heart.

Peanut's level II ultrasound. Pictures and an update.

Her tiny footie.

Her sweet little profile.

She had herself in this position the whole time.

She's definitely a girl.

Overall she looks great. There is however some question about her heart. It appears, at this point, that the right side of her heart is smaller in proportion to the rest of her heart. So, in 3 weeks we go to Abott and see a neonatal cardiac specialist. I am wishing, hoping and praying that this is nothing or that it might be something she will outgrow. They didn't give us much more information that that, other than she looks wonderful and the peri says she is clearly a gymnast.

20 weeks!

It's official. Even if I were to carry to 40 weeks I am half way done! I cannot wait to meet my little Peanut!

I don't know if I'm getting bigger? Maybe just pointier at this point? lol Well, no I know I am getting bigger, it just doesn't look like it so much in this pic. No stripes and a black shirt.

7.5 hours 'til ultrasound and counting!

Cloth Diapering, SoftBums

I am bound and determined to cloth diaper this little one. I've been doing a ton of reading and research on it and while the cord stub is still attached I will use disposables. However, once that falls off I hope to have SoftBums on hand for diapering.

Yes, it will cost more up front. BUT over time (around 2 years?) it will save me TONS of money. The two packages I want to get cost about $460 together and those two packages should have everything I will need for diapering through all of the stages. (I keep watching for a discount code though, to make it even more affordable.)

At any rate... this is one of the MANY "reviews" I have found on the SoftBums diapers which also covers how to use them. After watching so many "How to" and "Review" videos on YouTube I feel a ton more confident about my choice in diapering.

If you're interested, here is probably the most comprehensive video on the diapers I chose.

Cravings...

I think my cravings have figured out that if they're not on the GD diet approved list, they wont get fulfilled. So, now they're playing tricks on me. I went from craving all sorts of fast food junk to craving fruit! Clementine oranges specifically. I dream about the dang things!

Okay my dreams aren't quite as weird as this picture...

But close enough. I dream I am in the grocery store stocking my cart with the little boxes they come in. Asking if they have more... okay, maybe my dreams are as crazy as that. Even my nap had these dreams... I think I might need to get some Clementines.

Homemade Chicken Noodle Soup!

Forget OJ and sugary stuff. This baby apparently gets excited by healthy foods. She is kicking (We're going with she until proven otherwise.) like crazy, dancing around in there. I love it! I think it's safe to say she loves it too. This, by the way, is Grandpa's famous Chicken Noodle soup, but made here at home with his recipe. <3

Yummy and doesn't spike my blood sugars!

This weekend is going to suck!

Monday at 8am I have my level II scan. I am excited because I am hoping to hear definitively boy or girl, since I've been told both... and hoping to see a very healthy baby either way. 

On the other hand the last time I had a level II was with EmmaLeigh, they found that there was a large tumor on the placenta and that pregnancy turned very stressful with lots of BPP and NSTs I was back and forth to the hospital 5 of 7 days a week until I finally had her at 35 weeks. 

But either way, this weekend is going to DRAG on. :( I wish I could call and tell them to just do it today because the stress is going to drive me nuts! 

I got a guitar!

And thus far.. I've learned the first 8 - 12 notes of Bella's Lullaby to play for Peanut. Not a tremendous feat by any means. But it isn't too bad either considering I've never played guitar in my life. :)

I just hope I can learn the whole song well enough to play it confidently for Peanut when she's little. Although I guess she's already hearing my practice sessions. lol Hopefully those don't scare her away from guitar music. I figure I can learn this and maybe a few easier lullabies to play for her around the time she's born. Or, that is my goal at least.

Reading guitar tabs is interesting. It's like trying to fly in a flight simulator with the directions being opposite of the way you try to go. Going from one string to the next is backward(ish) of the way I would imagine it to be when reading the tabs. I'll adjust I'm sure.

Anyhow, I am excited by this, so I thought I'd share.

My new guitar. Nothing great, but it works!

Pregnancy brain... I have it.

Where did I put the keys... did I already open a water/soda... what time was that appointment... what did I say two seconds ago... what did you say two seconds ago... what was I just going to do?

The list goes on and on. I cannot believe how forgetful I've become. I know it's not just me, but it's driving me nuts. Not to mention those who have to deal with me. Dory.. from Finding Nemo? Her memory might be a little better than mine at this point.

I am so much like her!

I couldn't remember if I posted on the 17p inject today, I can't remember if I shared it.. I just can't remember anything these days! I guess I should thank God that I didn't get morning sickness at this point. Otherwise I would have had every "bad" pregnancy side effect known to women! lol Oi.

Week 3 of 17p

I just got home and I'm icing my bum. We've gone full circle, left cheek, right cheek and today was back to left. This nurse thankfully wasn't an idiot and the shot once again didn't hurt. (Last week the nurse needed a swift kick, that I didn't give. :p) 3 shots, 3 different nurses. I wonder how long until I make the full nurse rotation as well.

This is so very true.

All of this in hopes that I can carry past 35 weeks, when Emma was born, to between 36 and 37 weeks when they plan to let me have my sweet little Peanut. Side effects and all *there are supposed to be none... HA!* are so worth it. I love my Peanut! Now where's the Colace and my bed? ::yawn::

Happy Valentine's day!

From a mommy and her Peanut!

19 weeks

Officially over half way done, no matter if Peanut is born at 36 or 37 weeks. I can't believe it, then again, it feels like I've been pregnant forever. The joys of showing immediately.

Peanut's ever-growing wishlist.

by jigsawgirl

        

I can't believe we're officially past the half way point already. I have known since 12 weeks that the goal will be to deliver Peanut between 36 and 37 weeks. But WOW that seems so close now and I am SO under prepared. Talk about freak a mommy out! lol

Big sister's surgery went well!

Now Peanut and I are just trying to catch up on our self care. Ish! lol

But, we are very proud of Peanut's big sister. If you're interested there is a much more detailed update on my personal blog for Miss Emma.

I think we need a nap now.  ~.~

Taking care of big sister Emma.

Today Peanut and I will be taking care of big sister Emma before and after she has her tonsils and adenoids removed. We have the "mother load" of ice cream and popsicles for her to choose from along with a lot of pudding and jello.

We are not looking forward to surgery for big sissy to be, but we know it'll help her feel a lot better. I can tell Peanut is excited about her first time nursing, she's been kicking me all morning. That or she can feel mommy's stress. >.< Although I am trying my best to keep it to a dull roar for both my little ones. :)

Speaking of my cuties... here they are!

Thankfully we have help today so were not doing it all on our own. I have to say I wish it was at least one night in the hospital. I think that's the most nerve wracking part is bringing her right home and keeping her comfortable and safe and making recovery as smooth as we possibly can.

Babies and children should come with an attached warning sticker that surgical maintenance may be required. This is my second time seeing a child through surgery. Not that I'd put them back knowing in advance, but.. knowing in advance may have it's benefits? Then again... if I didn't know this was today... I just might not be so very darn nervous.

17p... so far. Pt. 2

The nurse today was brutal. Last weeks shot, nothing, didn't hurt at all. Today's nurse... OUCH! I wanted to kick her so hard! I came home and iced the spot for a good 30 minutes and took Tylenol. It STILL hurts.

It would be nice if you could pick the nurse who gives you the shot. I'd keep going with the one I had last week. Oh well, it's good for the little one.

18 weeks

I can't believe how far we've come. It feels like the days and weeks crawl by, but here were are... 18 weeks. Such a miracle, I wasn't supposed to be able to even conceive, let alone thinking anything beyond that. I know I've said it before, but I'm saying it again, I feel blessed.

I can't believe how big I am!

I wish I had been taking measurements of my "waist" although as quickly as I popped out, I wouldn't have had a good baseline measurement anyhow. I love this little Peanut and I cannot wait to meet her, even her siblings are very excited. Every time grandma sees me she points out that I'm pregnant because I am so big already. It's crazy! 

I catch myself thinking ahead. Imagining this little ones first birthday and knowing that this will be the first grand baby not to have the traditional "first birthday cake" by great grandma. It's bittersweet, but I am hoping my mom will pick up the tradition and do the same for this little one and eventually her own great grand babies. I never thought I'd have a grand baby that Grams wouldn't see, I miss her and love her tons.

Okay, on that note, only 2 weeks until our level II ultrasound at which I hope to get a ton more pics and to hear only good news!

I really would like

to learn to play this for the baby.

17p... so far.

I feel like I went back to the beginning of the pregnancy. I am horribly tired, very moody, mostly irritable.. and just feel BLAH.

I am sincerely hoping that these side effects go away soon. I hate feeling like this. Don't get me wrong, despite the side effects I plan to continue with the injections to make sure I keep this little one in as long as I can. Pregnancy is just the beginning and if it means that I suffer a bit to ensure her health, I say it's well worth it.

Hopefully those around me that have to deal with me and my side effects agree. :( I will say I am sorry in advance. I don't mean to be jumpy, crabby and sensitive. I promise I am trying to reign in the emotions and hormones. <3

As for Ava... grow baby grow. Mommy loves you so much!

The first of many...

Today I began the wonderful adventure of the 17p injection. I go to the clinic once weekly 8:30am, for the next... 19 weeks I believe... maybe 18 or 20. I'll find out at my next OB appointment *or* my Peri appointment. Or both.

So, 28 finger pokes a week, assuming I get a good poke the first time. 7 insulin injections a week. 1 17p injection a week. That's 36 needles going into my skin a week. Yikes. But there is no doubt that I will do what is needed to help grow this little miss as happy and healthy as I possibly can. I love her so much already.

So, that's my update for today. Oh and the goal of the 17p shots if I haven't said so before, is to keep me from going into preterm labor. I was lucky to make it to 35 weeks with Emma and while I know they wont let me go past 38 weeks with this pregnancy, I still want to keep this little one safe and warm until she's ready.