The New Team

So first of all, I promise this won't become a "Helena's Medical Saga" blog (I'm working on a new post filled with swearing, judging and my usual snark) but it's just the easiest way to update those who are interested in updates. If you're not, well screw you jerk! Kidding, kidding. Just move along if you don't want an update today. I'll bring the snark next time, I promise.

We spent a good chunk of the day at the hospital yesterday meeting with everyone we'll be working with from here on out. We had an ultrasound which showed that everything but Helena's heart looks great. She's right where she should be size-wise and she's growing and developing well. Apparently she's about 3 lbs 9 oz which is significantly less than I've gained so crapballs.

We met with my new OB and got her up to speed on everything that goes on with ME in pregnancy. I have to go get them some updated bloodwork and then I go back in two weeks for my normal OB schedule. I was kinda meh on her, but whatever. In the grand scheme of things who weighs me and checks my BP and then catches the baby isn't really what's important here. She seemed nice and like she knows her shit, I just liked my regular OB's better. Not a big deal.

We had a lunch break (whoever decided to build a Portillo's next to the hospital - bless you good sir, bless you), and then met with the pediatric cardiologist who we really liked. She saw all the same things our other cardiologist saw and completely agreed with his diagnosis. We got some good news in that her lower right chamber seemed to be not as small as it was in the other ultrasounds, which is what everyone was hoping would happen. It sort of resolved itself and caught up to the rest of her heart which was great. There was still some stuff that was iffy on the ultrasound that is kinda big deal, but they're hoping once she's born and they can do the ultrasound directly on her (rather than trying to see a tiny baby heart through me) they'll get a better look but in general it was a good appointment confirming what we already thought was the case (no surprises is a good thing!). We're going back for one last ultrasound before delivery (I'm almost 31 weeks), and at that time we'll also get a tour of the NICU, pediatric cardiac recovery floor and the maternity ward.

The best thing that came from the appointment is that the cardiologist recommends me being induced at 39 weeks to ensure that everyone we might need available at Helena's birth is at the hospital and ready to jump in if needed. My husband and I have said that our ideal situation would be delivering at the Children's Hospital, but being induced so that everyone is there and ready to go, so this is perfect for us. I was induced with both My Guys and it works well for me (I don't just... go into labor like some people, please) so it's a great plan.

All in all we're still scared and nervous and stuff, but we're feeling better that a solid plan is coming into place and we're going to be with the right people at the right place for Helena.

And apparently we only have about 8 weeks to get our shit together to get ready for this baby, so we gotta get on that!

Change of Venue

We will be officially delivering at the Children's Hospital. Despite what the surgeon originally told us, our cardiologist feels that as we cannot say with 100% certainty that Helena will be ok to breath on her own after birth we shouldn't take any chances and just deliver there.

I am relieved.

The more I thought about it the more I didn't like the idea of delivering at our local hospital for this very reason. Sure, she might be totally fine when she's born and able to breath on her own and getting enough oxygenated blood but if she's not, she'll need a procedure done that our local hospital cannot do. That'd mean a transfer 30+ minutes away to the Children's Hospital and then I would be at one place and she and my husband would be at another. I wouldn't be able to see her, or be involved in her first few days of care and it would make what I imagine is going to be a complicated situation even more complicated.

My blood pressure tends to skyrocket near the end of my pregnancies (full blown pre-eclampsia with My Big Guy, just really high BP with My Little Guy) and lord knows I'll already be scared and nervous about Helena's delivery - knowing that we're in a place that has all the care she could possibly need immediately available gives me a bit more piece of mind.

So next week I'm off to meet with my new high risk delivery team, and the pediatric cardiology team at the Children's Hospital and get them up to date on our situation. It's slightly annoying that my OB appointments will now be 30+ minutes away instead of 5, but it's a small price to pay to know that Helena will be born in the place she needs to be born in for the best care.

I looked up the doctors I'll be seeing and they are quite impressive, so that's reassuring as well. Everyone tells us that this hospital is THE place to go for pediatric heart issues - apparently it has quite the reputation for it. All these things bring us a bit more comfort in knowing we're doing all we can to help our baby.

But the best sign/omen/whatever you want to call it for us is that the high risk OB I'm seeing is named Helen. Seriously. It's like Helena has one of her angels watching over her already.

Counting Our Chickens

There's a superstition among Jews that you don't have a baby shower, or think of baby names, or set up a nursery or really do anything to prepare for a baby. It's considered bad luck for your baby. It's counting your chickens before they hatch.

Since Helena will be our third child I'm obviously not having a shower. We have most of the major baby gear from Our Guys and the few items we need to replace we can. I did buy some new girly bedding for her after we found out she was a girl, but that's really all the shopping for her I've done. That was at 14 weeks, so I figured we had plenty of time.

Then we got her heart diagnosis. And I haven't really bought her a thing since.

I couldn't bring myself to wander over to the girl section of Target or Kohl's or anywhere else. Not even when I was already in the store, buying new summer clothes for My Guys. The thought of going into the baby girl section really just freaked me out. I couldn't force myself to go there. I actively avoided it, not even daring to glance in its general direction.

She needed a new swing. Ours died with My Little Guy and we purged it a few Garbage Amnesty Days ago. It wasn't until Amazon had one on a Lightning Deal that I even thought about it. Apparently my cheapness trumps my fears and superstitions because that thing was a great deal and I did buy it. So there's that.

Somehow I came to be almost 28 weeks pregnant and all this little girl had was bedding and a swing (and her brothers'old carseat, stroller, toys, etc). I realized she'd be coming home from the hospital naked because I have bought zero new clothes for her. We have her carseat, but will they discharge her if she's properly strapped in in nothing but a diaper? Doubtful.

I was so excited that she was a girl and I could finally buy those adorable little outfits and then... I couldn't. I thought about it and realized that I wasn't buying her anything because I was afraid of counting my chickens before they hatched. I was scared to buy her stuff because what if something happens? Somehow the buying her stuff was tied to her health outcomes, or at least my fears about them. The Jewish tradition of no baby shower or baby prep suddenly made a whole lot of sense.

We met with our surgeon on Tuesday. It was a great meeting. He was very optimistic and positive and confident and we left the meeting feeling better about Helena's issues. Right now they think I can deliver at our hospital, and that the most she'll need right away is a shunt put in to help her blood flow to the right places. They think once that is in (if she even needs it), she'll be able to come home and grow and get bigger and stronger until we decide it's time to do the major corrective heart surgery around six months or so. The surgeon has done hundreds of surgeries just like the one she'll need and he said there's an over 98% success rate. He said the babies who have had this surgery can run and play and are basically normal kids. There are some minor activity restrictions on them (no competitive sports), but otherwise they're totally fine and grow and develop and live pretty much like any other kid would.

Our baby will come home. She'll need her swing, and her crib, and her bedding, and her toys and of course, clothes. I'm almost 28 weeks pregnant and tend to be induced early for my own health issues. I gotta get my shit together.

I went into the baby girl section of Target yesterday. I cried while picking out clothes. But I picked them out. She won't have to come home naked after all.

Heart

I am pregnant with our third child. It's a girl. She has a heart defect.

We went in for our 20 week ultrasound, and while we were excited we already knew she was a girl thanks to a DNA test we had done at our 13 week genetic screening so the big gender reveal had already happened. Knowing the sex took some of the excitement out of the ultrasound, but it's still always cool to see the baby.

The ultrasound tech came in and did everything, and I noticed she was very quiet when focusing on our baby's heart. I didn't say anything, but when she was done I asked if everything looked ok and she said the doctor would in to discuss it with us. I told my husband I didn't like the sound of that, but being a lawyer he replied that they have to say that so you don't get all upset and sue because the tech told you one thing and then the doctor told you another. Ok, that seems fair.

We had the doctor come in, and within about a minute he told us that there was something wrong with our daughter's heart. His bedside manner left something to be desired (along with a lot of other things I complained to the hospital about regarding him), but we were lucky in that the pediatric cardiologist happened to be there that day, and said he would see us. 

The pediatric cardiologist spent over an hour doing an ultrasound of just our daughter's heart and confirmed that it is not right. At that time, he wasn't sure what the exact situation was because she wasn't cooperating with all her moving around, and because she was just so small (she was the size she was supposed to be, but at 20 weeks that means 14 oz, so her heart was tiny).

We had our followup appointment and it was again confirmed that her heart did not form correctly. She has a number of issues, but our cardiologist has reassured us that they are all fixable and while she is in the womb (a phrase that totally skeeves me out) she should have no issues as she's getting all her oxygenated blood from me and doesn't need her heart to do all the work it will have to do when she's born. She will definitely need heart surgery, it's just a matter of when she'll need it (within a few days of birth or a few weeks) and whether everything can be corrected with one surgery or not (depending on the situation she might need surgeries throughout childhood to replace man-made parts that will not grow along with her heart). We will learn more as we have more ultrasounds and meet with our surgeon.

We meet with the surgeon at the end of the month to discuss her diagnosis, what surgery she'll need, and where we'll deliver (our local hospital or a Children's Hospital). The surgeon our cardiologist has recommended seems to be the best of the best which is also reassuring. We'll also have regular ultrasounds with the cardiologist to monitor her growth, bloodflow and her heart and health in general.

It's scary. It's really fucking scary. It's hard, and it's emotional and it's just plain scary. We'll have to hand our newborn over to a stranger who will cut her open to do things to her heart. No one wants to do that. Ever.

We're coping. It's hard, but we're trying to stay optimistic and look at the good news like the fact that we caught the defects while she's still in the womb so we can be as prepared as possible for what she'll need when she's born.

There is still a lot we don't know, and some of it we won't know until she is born, which is mildly anxiety-inducing to say the least. But this is the hand we've been dealt, and we will live with it and we will do all we can to help her.

We've discussed a lot names for this little girl; funnily enough while my husband and I couldn't disagree more on boys names (he likes Aristotle, I like Thomas) there are many girl names we both loved. One name kept coming back to us, and seemed even more appropriate after her heart diagnosis - Helena Jean. My Yiya was named Helen, and my husband's grandma is named Jenny. These are two of the toughest, strongest women we've ever know and this little girl is going to need to be tough, and strong and a fighter and naming her after our beloved grandmas just seems so fitting. She'll have a guardian angel in heaven in Yiya, and one here on earth with our Grandma Jenny. And she'll need them both. 

You're rude. And lazy. But mostly rude.

And now folks, it's time for a rant.

I recently set up a Facebook event to try to organize some fun times with our group of friends. I was looking for a date that worked well for everyone, so I attempted to start a discussion about what worked best for everyone so I could call and make reservations for our group. In order to book the most economical package, we needed at least 10 people. I figured this would be easy, since people normally like fun events and we were open to ANY Saturday in October for making it happen. This couldn't be easier, right?

No, wrong.

Because somehow, it's now acceptable to reply "maybe" or hell, not even at all to an invitation.

I had a few upstanding friends reply right away, but the majority of the band of idiots I associate with couldn't be bothered to even acknowledge my event. They couldn't be bothered to take a minute to look at a calendar, see if they were free and click a "yes" or "no".

That's fine, now none of us get to go have a good time.

You know, I used to throw holiday parties. Mainly Halloween and New Years. I eventually stopped because it'd be a couple days before the party and no one would have told me if they're coming or not. I'd have no idea if I'd have to cook/order food for 5 or 15 or hell, 25 people. Because I guess having manners, and RSVPing to an event you're invited to just is just too damn difficult. Because somehow it's become ok to just, not reply to invitations. Because being rude is ok now. Because making a decision about an event in a timely manner requires too much effort.

I got sick of hounding our friends, and nagging them about if they're coming or not. So I just decided, fuck it. These parties aren't worth the stress and hassle that is required just to get an answer out of people about if they're coming or not. You want to be rude and lazy? That's fine, no parties for you.

Being invited to something is an honor. Your host works hard to make an event go smoothly and ensure that their guests have a good time and are well fed. There is time and money involved in hosting an event, and to not acknowledge or appreciate that is just plain fucking rude. Deciding if you can attend an event takes a hell of a lot less time than planning one, so have some manners and tell your host what you're doing.

Of all the stupid nonsense Facebook is responsible for in the world, I personally hate this the most. With their fucking "maybe" reply on events they have made it an acceptable response to an event. From the dreaded "maybe", we have fallen even further from good manners to not even replying and having that be ok. It's become ok to be rude and lazy. It's ok to ignore any semblance of manners and ignore invitations.

Here, I'll break it down for you since apparently I'm one of the few people who still gets this.

1) If you are invited to an event, you should RSVP as soon as possible. I thought this was a "no duh" but congratulations, you have proved me wrong.
2) If you ARE able to attend, say so. If your situation changes, and you are no longer able to attend tell the host as soon as possible. Apologize for the change in plans, as your host has spent time and money counting on your presence. To no call - no show is rude. Apparently that needs to be explained.
3) If you ARE NOT able to attend, say so. Send your regrets as soon as you know that for whatever reason you have (and frankly, I don't give a shit what it is, if it's supposed to be cloudy and that upsets your delicate sensibilities fine, just fucking tell me) you cannot attend. Your host is planning on providing you with food and entertainment and once again, if you're not coming that affects the cost and scale of the event and that information is important to the host. Once again, if your situation changes and you are able to attend, tell the host as soon as possible and ask if it's ok to still come (if it's me hosting, I'll tell you of course, and thank you for letting me know to up my food prep). To just show up after you've said no is rude. Again, apparently that has to be explained. And if you just show up without telling the host that you're coming now, don't be surprised if you don't get to eat (impossible at my events - as someone who is Polish and Greek and married into an Italian family I don't consider it "enough" food unless I can feed three times my expected guest list) as your host has not planned on your presence.
4) If you are uncertain about your ability to go, communicate that to the host and give odds on whether or not you'll make it so that they might plan the food/supplies/reservations accordingly. Tell the host AS SOON AS POSSIBLE once your plans are confirmed. To just reply "maybe" and leave it at that is rude. Again, amazed I have to explain this.

Got it? Great. Now next time I attempt to host something I expect better of everyone.

Dude. Let's do this later.

So My Little Guy seems to have inherited my delightful amoxicillian allergy. He's been on it before, but this time around (mild ear infection), he broke out in hives and splotchy red patches all over his body. I called the doctor who recommended Benadryl. I gave him some and it cleared right up.

At that point we didn't connect it to the amoxicillian because he's been on it several times before with no problems. Then my mom told me that my sister's allergic reaction didn't happen the first time she took it, but a couple times later. Apparently Dr. Google concurs that it sometimes takes several exposures to trigger an allergic reaction.

So we wake up today, he's hive-free so I sent him to school and called the doctor to ask about the amoxicillian allergy. They said they can't diagnose him without seeing the hives, which is fair. Problem is there were no hives. I would have gladly pulled him out of school to get this thing nailed down but he was hive-free. Curse you Benadryl and your effectiveness. Doctor agrees there's no point in bringing him in without the hives and we go on with our days.

Noon rolls around and I go to pick My Guys up. Hives! Hives! He has a hive on his face!

I've never been so excited to see a hive on a child before. I called the doctor and they got us an appointment so they could see the hives and we can get him allergy diagnosed.

Problem was that the appointment was smack dab in the middle of naptime, which mean no naps after school which meant my wonderful children were cranky, fussy messes by the time it came to leave for the doctor.

I manage to get them wrangled into the car and we head off to the doctor. Miraculously we don't wait long and the nurse calls us in fairly quickly.

Now, I love our doctor. We chose them based on a friend's recommendation and it's worked out very well. I have pretty much nothing negative to say about them.

What we found out after we started going there was that (now follow along here) the mom of one of the kids my sister went to grade school with is the office manager there. Normally this is no big deal and we say hi and exchange pleasantries (ok, so yes, that is awful - small talk, UGH) and move on with our lives.

But not today. Nooooooooo. Today this bitch follows us into the exam room and starts asking random questions about if my parents are still in their old house, and telling me about her family. Fine, whatever, I can pretend to care in a normal situation, but apparently she feels her small talk is more important than me answering the nurse's questions about My Little Guy's rash/hives.

So I have Mrs. Small Talk chattering on, the nurse is trying to get information about My Little Guy, My Big Guy is looking at pictures on my phone and telling us all what's happening  in them at volume 289473 in the tiny exam room, and My Little Guy is using the exam table like a playground.

I really feel like I deserve a prize for not turning to Mrs. Small Talk and just yelling, "Shut the fuck up! Just shut up! I don't care!" so I could, you know, attempt to medically care for my child.

The the kicker - Mrs. Small Talk tells us to say hi to Yiya.

...

Oh boy.

My Big Guy looks up from my phone and says, "Yiya died." Mrs. Small Talk looks at me and I'm fighting back tears and tell her, "Yes, Yiya passed away in April."

Then, while the nurse is STILL trying to get her answers Mrs. Fucking Small Talk starts asking me about Yiya.

Ok. I get it. You want to know what happened. You don't mean any harm. I understand that.

But seriously. It's like a fucking circus in this exam room, I'm obviously trying not to cry and YOU JUST KEEP ASKING SHIT.

I finally just gave up and basically ignored her while focusing on the nurse and finally was able to give her the information about My Little Guy's rash/hive situation and Mrs. Small Talk left but dude. Fucking time and place lady. If she had waited and accosted us on our way out it would have been so much better than attempting to have a conversation about where my parents live and who they're still friends with now. Dude lady, you're a mom AND you work in a pediatrician's office! Get a clue! Gah!

We eventually saw the doctor, and yes, it was noted in My Little Guy's chart that he now has an amoxicillian allergy and won't be prescribed that anymore. We grabbed a couple of suckers, said goodbye to Nemo and his daddy in the fish tank, and oh yeah, I ignored Mrs. Small Talk as she said goodbye on the way out. Immature passive-aggressive moves for the win!

Summer Wrap-Up

So it's been about three months since I snarked it up around here. Part of that is just the general busy summer season, but part of it is that I still don't feel 100% myself and am learning to deal with and accept the new reality that my Yiya is gone. Yes, it's been a few months since she passed away, but this is some hard shit to handle and it's rough and it sucks and no, I'm not ok about it yet so you can just shut the hell up asshole.

Uh, sorry.

Any ways, I've reached out for help on that front because my anger has gotten even angrier (scary, I know) and as I said, I'm not myself. We'll see how it goes but I'm optimistic that things will start improving soon.

But let's focus on the fun/funny/weird stuff that's happened this summer shall we? I will use a list, because hey, laziness.

• We tried going to a new place for fireworks on July 3rd and it was an unmitigated disaster. Over a mile walk there and back (We were told there was ample onsite parking! Ample!). The food vendors ran out of food. The kids area shut down an hour early, just as we arrived (is there anything sadder than watching a 2 and 3 year old watch a bounce house deflate in front of them?). It took us 45 minutes to get home - home is 5.5 miles away. See what happens when you try something new? Lesson learned. Never try new things again. 
• We enjoyed many an experience with carnies as we went to every local festival that had rides. It was interesting to see how many of them took their jobs, and the safety of the children very seriously (measuring kids, counting tickets, buckling seat belts...) and how many didn't (I think both my kids snuck on a car ride without giving tickets multiple times). And My Little Guy fell in love with a neon blue fuzzy fish that my husband won at a local fest. Because carnies prizes make the best lovies. Dude, I was so scared to clean that thing, I thought for sure it would disintegrate in the washer but he seems to be made of tougher stuff than I thought. Blue Guy, as he's aptly named, lives on. As does My Little Guy's love for him.
• My BFF and I continued our tradition of running obstacle course races every Saturday in June. It was awesome. Although seriously people, if you sign up for something called the DIRTY Girl MUD Run don't fucking complain that you have to (gasp!) get dirty and muddy. And stop screaming any time mud touches you.

Dirty, filthy girls. And notice my handsome mustache.

• I went on a Girls' Weekend to Indiana. We stayed in a casino resort that sold us 100 ounces of beer for $15. We had a carb-laden dinner at the Olive Garden. We indulged in a spa day. An older dude who was a total Tony Stark-wannabe bought us drinks and hit on us. We went to an outlet mall. It was pretty much everything you could ask for in a weekend. 
• I declared it a summer of park exploration and My Guys and I went to every new park we could find in the area. Some were awesome. Some weren't. Some had some weirdass parents there ("No honey, the slide isn't HUNTER green, it's SAGE green." WTF?). We had a great time though and discovered some kickass parks in the area.

My Guys thoroughly enjoyed this park, it was our best find

My husband shares my level of maturity

• We went on what was (for us) the worst vacation ever to our regular Palm Springs spot- both of My Guys got horribly air sick on all the flights, My Little Guy got swimmer's ear (mmmm expensive ear drops), we all (including our friends who came to stay with us) got this horrible flu that lasted over a week, there was a standstorm that had winds so strong they knocked the baby monitor into the pool and we had to buy a new one, someone stole my credit card and racked up $1,500 in bogus charges (I don't even HAVE an iPhone, fuck spending $600 on accessories for one!), our basement back home in IL flooded while we were gone, our rental car had to be returned cause it had a leaky tire, and we missed Disneyland cause we were all puking. We still had fun though, and their swimming skills REALLY developed while we there.
  
   Look how happy!
  
  
  
  
  

That pretty much brings us up to speed. All in all it was a great summer, and I am NOT looking forward to fall winter. Although, you know, PSL's and football so it ain't all bad.