#ourtaquito--Winnie the Warrior

 Hi All,

We had our second fetal echo and medical meeting last Friday. I wish I could be giving better news but we were overwhelmed with so much new information that we are still trying to digest. I will try my best to convey what we learned. Winnie's heart is more complex than we thought. She still has the thicker walls on the right ventricle, hole, and a narrowing aortic valve. The hole is causing oxygenated and deoxygenated blood to mix, not making it to its proper channels and the narrowing of her valve will cause turbulence for the blood getting to the lungs. If we decide to intervene after birth she would would have to be taken to the NICU immediately and started on an intensive medication through an IV to try and get the blood to go where its supposed to go.  They would then wait to make sure she's stable and then move onto a different intervention. This intervention would mean she could be in the NICU for several months. Though every trisomy 18 baby is different, the last baby they did this treatment with was in the NICU for 8-9 months. Aside from her heart our little girl has some cards stacked up against her because of  trisomy 18. Her small size, she is 2 lbs 10 oz and projected to weigh 3.5 lbs when she is born, impacts her body regulation. She will have difficulty regulating her temperature, blood pressure, blood sugar, and calorie intake. Another symptom of trisomy 18 is having a small lower jaw and they are seeing this on the ultrasounds. The reason having a small lower jaw is an issue is because her tongue will still be average size but will be enlarged because her jaw is smaller. This causes issues with her ability to eat and breathe. Trisomy 18 also causes severe cognitive delays and effects the base of the brain which controls automatic responses. Her brain could forget to tell her to breath and she could have episodes of holding her breath. 

The other part of our meeting was discussing the different paths we can take when she is born. The team really listened to us and what we value and our priorities when it comes to proving the best quality of life for our Winnie girl. The two different options are comfort care or intervention care. For intervention care, as I mentioned she would be taken to the NICU as soon as she is born to get started on the medication for her heart. Right now we don't know what other interventions she might need and we wont know until she is born. The other option is comfort care. Comfort care means they would take Winnie's lead and provide what she needs but in a noninvasive way, this could be giving oxygen or feeding her. There is a possibility of still being able to bring her home on comfort care and we would work with an outpatient team who would come to us once of twice a week to evaluate her.

To say the least it was a very overwhelming day for us. There is still a possibility that she could pass away in utero or during delivery. We will never know how much time we will get with her but we are so hopeful that we will be able to meet her and hopefully have family meet her as well. I wish I could keep her safe in my belly forever but we also just want to meet and be with our Winnie girl.

The plan is to still induce me at 37 weeks which is the first week of May. We do not have an exact day scheduled yet but plan to have it picked by this week.

We appreciate the continued support and prayers from our family and friends.

A 3D of our sweet sweet Winnie

Much Love,

A, C, & W

#ourtaquito--Winnie the Warrior

 Mini Update

Hi All,

I had an ultrasound on Thursday, my placenta and fluid levels are all good. This is good because the longer she can stay in me the more she can grow. As long as my fluid levels and placenta continue to stay good, I will get induced at 37 weeks which would be the first week of May. She was wiggling around a bunch during the ultra sound but we were able to get some more ultrasounds pictures.  

Our girl 

Her tiny foot

Thank you for your continued support and prayers. I will try and have the updates posted by Sunday since our appointments are usually later in the week. We have another fetal echo next week and we will be meeting with the medical team to give us insight on what delivery day will look like. 

Much Love,

A, C, & W

#ourtaquito--Winnie the Warrior

Hello Family and friends,

We wanted to create a space where we could update everyone on our sweet baby girl in one place.This will be a "brief" update of our journey so far. First, thank you for all of the support, love, and prayers. We feel so blessed to have so many people in our corner. The support is truly overwhelming and appreciated.

Our Journey began at my 20 week ultrasound on January 14th. This ultrasound is meant to check on the babies development and we also got to find out the gender. What was seen on the ultrasound was bilateral Choroid plexus' on the brain, this means there were cysts on her brain on each side. She was measuring small and her fists were clenched but we also got to find out we were having a baby girl!

The next few weeks can only be described as waves of information and emotions. We saw the maternal fetal medicine specialist who tried to get a better look at the heart but our girl is stubborn and does not like ultrasounds. They speculated that what they were seeing matched the diagnosis of Trisomy 18 which is a very rare but fatal chromosomal disorder. To know for sure we needed to do an amniocentesis which did confirm that she has Trisomy 18.We had to wait 10 days for these results. We were told that she was not likely to make it full term and that we could induce delivery when we wanted. They also told us that if she does make it to full term we would have minutes to hours with her. Our girl was not giving up so neither were we. When we got the amnio we also had another ultrasound to get a better look at her heart. The specialist could only see so much because once again our girl wanted nothing to do with letting them see her heart. But they did see abnormalities with the lining of her heart which concerned the doctor that she could be in heart failure. From there we made an appointment with the fetal echo ultrasound to really get a good look at her heart. In the weeks leading up the appointment we had to go to the doctor weekly to check to make sure her heart was still beating.

At the fetal echo ultrasound there were a couple of findings.  1. there is a narrowing of her aortic valve 2. her right ventricle has the thick lining and 3. she has a hole in her heart. The cardiologist made these sound like they were not super complex issues but they still would require open heart surgery. The heart surgery would not have to be right away but it all depends on how she comes out and if she can sustain on her own. We left that appointment feeling hopeful that we could possibly bring her home. Again we don't know what that would entail but having the hope is a big deal. The thing with trisomy 18 is that there is so much information but there is so much unknown in regards to our little one and unfortunately we will not know what to expect until she is born. 

We know a whole lot of information but also know nothing at the same time.

Things we do not know:

- When she will need open heart surgery

-How her organs will function once she is born

-How long we have with her

Things we DO know:

-We will do whatever is necessary to make sure she has a good quality of life

-She is so very loved

-Winnie is a warrior

We meet with the Medical team in two weeks and will hopefully get a better idea of what delivery day will look like. For now the plan is to get ultra sounds weekly to check on my fluid count and that my placenta is working. At the moment we are planning on inducing at 37 weeks but could be as early as 35 weeks which would be the week of the 18th in April. Until then, Winifred Jesse Racusen is so loved and we are excited for the day we get to meet her. 

Much Love,

A, C, & W

It's been awhileee

Oh hey remember me? It's been a minute. #gradschool

Wow I cannot believe its almost been THREE months since I last posted. Its been a whirlwind with starting grad school and getting used to this new schedule. I really do love creating posts so I will try to make it a priority (thats me holding myself accountable). So much has happened since my last update. Obvs I started grad school, My best friend got married(!!),  and so much more that will be in upcoming posts!

Lets get to it!

Not too much of an update on grad school, Im about three months in and so far really enjoying it. Go to grad school they say, It'll be fun they say...said no one ever. No but really I am really loving what I'm learning and just can't wait for these two years to go by so I can start helping people. Are you ever excited just to fast forward to see what you have learned? No, oh same. Even though I am enjoying what I am learning I still didn't miss stressing over exams and spending weekends and weeknights doing homework and studying. BUT I will make it through ( at least, thats what I keep telling myself).

Next up.. My friends wedding! I have know Jacqueline since 2nd grade. I was new to the school and cried almost every day until Jacq had enough of it and became my friend. We've been friends ever since then. We have worked together and lived together. Basically She's one of my nearest and dearest and it was an honor to stand up and watch her marry Adam. The wedding was at a farm and it couldn't have been a more perfect night. It is something else when you witness a close friend get married. Jacqueline is like a sister to me so my heart was so happy that day. It was an honor to be her maid of honor and to sign as a witness of their marriage. Overall, all the feels. 

SUPER blurry but we're SUPER happy

My friend is the coolest

These ladies 😍 

The Beautiful Bride

My forever and favorite wedding date <3

Leaving ya'll with this gem of a photo. It's cool were in a band. #Denimgang

I hope you have a great and relaxing weekend, you deserve it! 

peaceloverockandroll

xoxo,

A

Im a 90's baby

Well folks happy Monday! 

This weekend was restful and left me recharged for the week ahead. The weekend included a BBQ at my girlfriends Chelsie's place and Sunday we went to the farmers market and just chilled. I start my first masters class tomorrow! I'm feeling excited and super nervous. I am ready to get started though and have a schedule. This past couple weeks I haven't had a set schedule which is nice but also can get boring. I probably should be reading or printing out my syllabi but instead here I am writing and considering making my favorite chocolate chip cookies. I'll save the cookies for the end of the week as a little treat and maybe bring them to a picnic while watching a Queen cover band on Saturday. 

What a minute..what does the title have to do with these ramblings? It doesn't! BUT it does go along with what I'm about to share. Since the air is getting crisp and school is starting, I'm itching to host a themed party with my girlfriends. Around this time last year I threw a retro game night. This was one of my favorite parties of the year. The party was pretty simple and so much fun to put together. 



First // I sent my friends a Facebook invite with Retro game nite spelled out using boggle letter cubes.You could always send an email or hand made card. In the invite I said they could dress retro or comfortably, whatever they want.

Second // I had a 90's game picked out that we would start the night off with. Dream Phone! It was so fun to play and brings out a lil competition with your friends ;)

Third// FOOD! This was so fun! I picked up Twinkies, hostess cupcakes, Chex mix, pigs in a blanket, I made rice Krispie treats, mac n cheese, basically all the food that gives all the nostalgia vibes. Old Fashioneds' were the drink of the night.

Fourth // Decor/ambiance to make it feel retro I used sequin runners and pearls necklaces (I had from my wedding decor). I placed pearl necklaces right at the door so the girls could put them when they walked inside. I also had a polaroid camera that we took some pictures on. Lastly, I made a  Retro Game Night playlist on spotify. Making playlist is one of my favorite things to put together for a party because its so simple yet sets the tone. 

The last picture is supposed to be a boomerang but not sure how that works in a blog! oh well I'll figure it out! I hope this inspires you to do a themed party because they are truly so much fun. Right now I'm in between an ice cream social OR a whiskey and donut night. I'm still on the fence of what kind of themed party I want to host next but until then..Have a great week!!

peaceloverocknroll

xoxo,

A

Last Sail Before The Veil

Oh hello there, its been a minute.

So as promised, I am doing a recap of my very fun weekend, my besties bachelorette party!! I had the honor along with the other MOH to plan this bachelorette weekend. Let me tell you planning is no joke..afterwards I thanked my sister again for planning mine. 

OKAY so when planning a bachelorette party you want it to feel like the brides vibe. Our bride is the easiest to impress but we really wanted to have her favorite things. She loves being at her cabin up north and taking her boat out so we automatically pictured her bach at a lakefront. The closest lake front that offers many activities is Lake Geneva. We couldn't find an airbnb in Lake Geneva so plan B was to look at the lakes near by. We found Lake Lawn Resort which is on Lake Delavan. Lake Lawn Resort had everything we were looking for: spacious rooms, boat rides, restaurants, and bars. We didn't have to leave the resort for anything!

Our Schedule:

Friday: relax, drink, and order pizza. People came at their own time after work so we wanted a chill first night..played some "Drink if..." you learn a lot about people ;)

Saturday: We had breakfast in the hotel room, hung out at the pool, went on our boat ride, then had dinner in the hotel room (we had SO much food to eat), games, and then ended the night at a bar on the resort.

Our Decor

This Penis veil has been worn by each person who has gotten married in our friend group. Its the sisterhood of the traveling penis veil. We're cute we know :)

Mcsheff brought these cupcakes and they are the cutest!

We had koozies made so they could be used at the pool and boat ride 

aaaand penis straws..because penis straws..

This was a game where everyone brings a pair of panties and the bride has to guess

who brought each panty. Also we had signs that Alex brought for some fun photo ops

GAMES

We played just a few games! The first night we played "drink if.." so basically you drink if you have done what the statement says. The second night we played "The Groom Said What?" I had a list of questions I sent the groom and he sent back a video of him answering the questions. You ask the bride questions and hear her answer and then play what the groom answered. I highly recommend. I think its the cutest game ever! We also had "kiss my.." or "place a peck on the pecker" think pin the tail on the donkey but R rated. We didn't end up playing it which made me kinda sad because it looks like a fun and hilarious game to play.

All The Fun

We had a 19 year old captain for our boat ride.. Poor girl didn't know what she was in for.. 

But she was awesome!

We definitely asked if there were fish in the water..🙈

 Representing our High School BGHS

I spy with my little eye..Kiss my pecker..

We also bought tattoos for going out Saturday night

 LOVE my Jacq-o-lantern

The bar we ended up going to happened to have a band of a bunch of oldies who were playing the oldies which is right up Jacqueline's alley, she loved every minute.

There is nothing like a weekend getaway with your girlfriends. I don't know about you but it is so so therapeutic for me. I left the weekend with a grateful heart and many memories #GAIL (if you know, you know).  I hope you are having a great week and have a wonderful weekend ahead! 

I start school next week..ahh! Im excited and nervous and just all the feels! I will do an update soon, its on my list of to-dos but for now..

#peaceloverockandroll

xoxo

A

Life check in

Ellooooo life has been a little busy lately but also not at the same time. So in case you were wondering what my summer has looked like the past couple weeks, just your average puppy cuddles, pool days, cubs games, prepping for classes, and lazy days...

90% of the time this is what blogging looks like for me. My sweet monster loves to have all the attention and is just a wee bit demanding. But as you can see below we don't give him any attention at all 😉

Name a better combo..I'll wait.. jk we know theres no better combo.

 This latte has been on repeat,

 even Lincoln wants some!

My favorite latte:

1/2 C coffee

1/2 C almond milk

1/2 T cocoa powder

1/2 T maple syrup

Blend all together, pour over ice, and ENJOY

POOL DAYS FOR DAYZZZZ

Channeling Benny the Jet Rodriguez

We always cheerin' on our Cubbies 

Lastly, I've been busy planning with the COMOH our besties bachelorette party! It is going down this coming weekend! Expect a recap next week!! :)

Hope ya'll have a great rest of your week and a wonderful weekend, you deserve it!


xoxo

A