#ourtaquito-- Winnie the warrior

 Ultrasound update---

I had my weekly ultrasound done on Thursday. This time they checked my doppler, fluid levels, and Winnies growth. My doppler number is still abnormal but did not increase anymore. My fluid count is all good so we are still on track for May 11th delivery. Baby girl weighs 3.6 lbs! They thought she would be at 3.5 lbs when born, so I was proud of her growth. It's the little things that bring us joy. 

We cannot believe Winnie will be making her arrival in 10 days. We will be anxiously awaiting her arrival and pray that we can get some time to love on our girl. Family is so important to us and so far the hospital is allowing two people at a time from our immediate family to meet little Winn. All we want is to give Winnie the best quality of life in her time here that is filled with so much love.

Tea party for Winnie

Grateful Hearts

Last weekend my sister threw us a beautiful intimate shower. We could not have asked for a more perfect day to celebrate our girl. We had some of our nearest a dearest there to celebrate who have truly been a blessing during this difficult time. We received some really special gifts that will help us hold Winnie close to our hearts, always. After one of our appointments that felt so doom and gloom, Cory and I decided that we were not going to just live in constant worry and sadness. Winnie is still our girl and she is still a blessing that should be celebrated. We decided we wanted her to get everything she deserved and would get if it were a "normal" pregnancy. When we were asked if we wanted a shower, we said absolutely, we wanted to celebrate Winnie and have her be surrounded with love, that is exactly what we got. My sweet friends also gifted us a maternity shoot and we are so excited to hold onto those photos forever. They will remind us of the happiness our little girl brought to our lives before we even met her. Though this pregnancy hasn't been easy we are still blessed to have our little girl on the way. 

Much love,

A, C, & W

#ourtaquito-- Winnie the warrior

 Hi All,

I had my weekly ultrasound for them to check my doppler and fluid levels. My doppler levels are still a little elevated but we are still planning to induce in May. We have scheduled our date to be induced as long as my levels do not rise any higher, we will stick to the plan. We will be going in the night of May 10th to start the inducing process and deliver on the 11th. I will be about 38 weeks when Winnie makes her arrival. We also had a followup meeting with our medical team to create a birth plan so everyone who works with us is on the same page. Our team is very supportive and helpful in helping us feel as prepared as we can for delivery. 

We have a mix of emotions as we near our delivery date. At the start of this we did not think we would even make it this far. It goes to show how much of a fighter our girl is. Though we do not know what the future holds, we cannot not wait to meet our Winnie. We are so grateful for all the love and support we have received from family and friends, words can never describe how much it means to us.

I will continue to get weekly ultrasounds until the week of May 10th, which will be here before we know it!

Much love,

A, C, & W

#ourtaquito--Winnie the warrior

 Weekly ultrasound update--

I had my weekly ultrasound done on Monday. Fluid levels are still normal but my doppler levels were elevated. If you are like us then you have no idea what this means. The umbilical artery doppler measures the amount of resistance in the placenta by comparing how much flow occurs during contraction and relaxation of my circulation. What this means for me--- right now it is okay but they will compare it to numbers I get next week. If my levels keep rising I might have to deliver earlier than expected. Praying my levels don't rise, I want to keep baby girl safe in my belly as long as I can and give her a chance to keep growing.

Our Winnie girl is the wiggle Queen, especially during ultrasounds but this time she sat still for a little bit so we could get some pictures!

We think she has Cory's lips..We've got a mini Cory 💕

Much Love,

A, C, & W

#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