An open letter to 2021

Dear 2021,

You were heavy. You took A LOT. You gave some back. You pushed. You Challenged. You knocked us hard. You brought light. You brought strength. You brought us closer. I don't think words can ever suffice and describe all that we felt in 2021. When thinking back on everything we have been through its a tidal wave of emotions. What I have learned is that grief and joy are harmonious. We miss our girl but we find joy in the time we had with her and blessed that we were chosen to be her parents. I know Winnie would want us to find joy, after she passed a song kept coming to me. I saw it on all social media platforms and even played on a commercial until finally I sat down and listened to it. AND the song went right to my heart, it felt like our Winn was talking to me. The song is "We'll meet again" by Johnny Cash. Now anytime we hear the song we feel closer to our girl. When parents go through infant loss, what we learned from our grief group is that often times parents have a symbol that reminds them of their baby, like a butterfly or flower. For us, the sun represents our Winnie. So if you ever find something with the sun or its shinning extra brightly please share it with us. It was hard to move into the new year because it felt like we would be leaving Winnie behind but what I have learned is that we take her with us and as long as we continue to talk about her and honor her she will never be left behind. Winnie you brought so much happiness into our lives and I have never seen a more perfect baby. We miss you and we love you. Winnie brought so much love and gratitude to our lives, she also touched so many other lives. We were able to grow amongst pain and chaos and we really had an amazing circle who rallied around us. For that, I will be forever grateful. Cory and I were able to grow closer and stronger than ever, I couldn't ask for a better partner. For me, I was able to grow more in a my faith and I do believe God has a bigger plan for us. Already, I feel by sharing our stories we make it easier for others to share theirs. Maybe thats Gods plan for us or maybe its not but we will continue to share our story in the hope that it could help others who experience infancy loss. As we move into the new year we will continue to share and honor our girl. 2021 you took but you also gave. We will forever be grateful that we are Winnies parents and that we got to hold and love on our girl. "But I know we'll meet again some sunny day".  Goodbye 2021, we are carrying our memories in our hearts with us into 2022.

xoxo,

A

Now please enjoy photos that make me smile from our 2021 with Winifred!

   

#ourtaquito--Winnie the warrior

 We carried you for every second of your life and we will love you for every second of ours.

Our sweet Winifred Jesse left us for heaven before she made it into our world on May 9th, 2021. Our hearts will forever ache for her but we find peace in knowing she is in heaven along with other loved ones who have passed before her. Our sweet girl taught us about unconditional love and gratitude. She touched many lives and was loved by so many in her short life. We can never thank our friends and family enough for the mountain of love and support they surrounded our little girl and us with through this whole journey and now as we grieve our precious babe. Winnie you are a warrior, Mom and Dad love you so much and feel so blessed we were chosen to be your parents. We miss you everyday but we will try our hardest to continue to shine your light through everything we do.

"But I know we'll meet again, some sunny day" 

On May 8th we had learned that our Winn had passed away. That day we checked in to the hospital to induce labor. Winnie was delivered on May 9th at 3:22 pm weighing 3.2 lbs and 15 inches long. Every inch of her was perfection. She had Dad's ears and lips. Her niece said she had the most perfect lips. She had Mom's toes and the most boopable nose. Our immediate family was able to spend some time with Winnie, hold her, and love on her. We were fortunate to have amazing nurses that made us feel comfortable, loved, and supported in a horrible situation. Even though that was not how we imagined our time with her would be, we will be forever grateful for the time we got to spend with our Winnie girl.  Leaving her on the 10th was the hardest moment Cory and I have ever faced but we knew it was time to leave and hold the memories we made close to our hearts. 

Thank you again from the bottoms of our hearts to all the family and friends who have and continue to check in on us during this difficult time. We know our Winnie felt all the love that surrounded her and that she passed in the safest place. 

Winnie, Mom and Dad love you, always.

Much Love,

A, C, & W

#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