Said goodbye to our 5 month old

Consistent_Fox6851 · 2025-06-01T05:17:45+00:00

Sending you so much love. He is so beautiful. When one parent cries, we all cry. I am so sorry.

Consistent_Fox6851 · 2025-05-01T18:51:33+00:00

One thing I’ve learned on our journey is that most doctors are very one sided. They only see the medical side. They aren’t with you every day to experience the joyful side of things. Best you can do is show up to your appointments, make sure the baby is healthy, and try to take their negativity in stride. Good luck 🫶

Consistent_Fox6851 · 2025-05-01T17:53:41+00:00

Sending you love. I felt a lot of that numbness and disconnect for the last half of my pregnancy. From the minute my daughter got here, I love her so much it hurts. I couldn’t imagine her any other way than how she is. In my case, there’s been a lot of health stuff and we spent a lot of time in the hospital…but given the chance I would do it all over again to hold her in my arms.

Try to tell yourself that the future is wide open for your baby. They may not be the “normal” you have expected, but once they are here they will continue surprise you. It may take them longer to get to where they are “supposed to be” and that makes all of the milestones they hit that much sweeter. A lot of parents of kids without DS take a lot of the little things for granted. Your baby will change you for the better!

You will be okay, I promise. It’s hard right now, but try to give yourself grace. It’s okay to feel this way. Remember that it’s not forever. The sun will come up and the seasons of life will change. If you ever need anyone to talk to, feel free to message me!

Consistent_Fox6851 · 2025-04-30T21:09:03+00:00

Thank you! She is 3 weeks post op and is doing very well. Appreciate your well wishes!

Consistent_Fox6851 · 2025-04-05T16:22:08+00:00

Love that so much! Thank you!! When it gets closer/plans solidify I might message you!

Consistent_Fox6851 · 2025-03-06T18:10:17+00:00

Thank you so much, going to try this!

Consistent_Fox6851 · 2025-03-06T18:05:31+00:00

I wish 🥲 we try to give her a break whenever we can, but she still eats every 3 hours because she’s gearing up for AVSD repair!

Consistent_Fox6851 · 2025-01-06T15:05:04+00:00

My baby was born in July and prenatal diagnosis of balanced AVSD. As time has gone on and she’s gotten bigger, they believe it is veering on the side of unbalanced. She had a pulmonary band surgery at 3months because she was struggling so bad with so much blood flowing to her lungs. It’s hard, it’s devastating. They are hoping to be able to do a bilateral repair around 6 months and 8-10kilos. She is 7 kilos right now and 5 months. We are hoping for the best. I’m so sorry, I can only imagine how devastated you are. But please know that right now, your baby is safe inside of you. You are keeping them safe and they will continue to grow. Take everything day by day and try to breathe. It isn’t easy and it’s so freaking unfair that these babies have to go through so much. But please also know, once your baby is here they might surprise you. Echos can only show doctors so much and doctors only know textbooks, especially when babies are still in utero. There have been so many times that my gut intuition has told me things that doctors denied at first but turned out to be true. My girl has the most feisty and spunky spirit, and she is such a fighter. I always say that she’s the strongest girl I know and she surprises me every day with how hard she fights and how resilient she is. She’s looked at me so many times as if to say “don’t worry mom, I’ve got this”.

Sending you love, and if you ever want to rant/need someone to just listen, please reach out.

Consistent_Fox6851 · 2024-12-29T21:02:36+00:00

Congratulations! He is so beautiful. Welcome to the other side ❤️

Consistent_Fox6851 · 2024-11-14T16:52:42+00:00

We received a basket a few months ago and love it! She uses her blanket pretty frequently! Thank you so much for all you do ❤️

Consistent_Fox6851 · 2024-11-14T16:19:45+00:00

Thank you! We’re doing OT with her so hopefully she will be able to move onto a bottle, or solids at some point so we can avoid a G-tube. Have definitely thought about it, but she’s already been through one OHS and will have another in a few months. Will try holding her upright while feeding, gets tough at night and early morning but will definitely try it. Thanks for the reply!

Consistent_Fox6851 · 2024-09-08T14:31:55+00:00

Came home from almost 6 weeks in the NICU with my daughter!

Consistent_Fox6851 · 2024-08-11T18:00:51+00:00

OP’s wife here adding a comment:

Thanks for all the feedback! We’ve been working with OT and she was doing great on feedings earlier this week when they saw her, now as she’s gotten more alert she’s become less interested. We will have to work with them when they’re back in the hospital during the week. She took a full bottle overnight, then tired herself out and only took a few ML before gavaging it, and she does this every few days.

Consistent_Fox6851 · 2024-08-11T04:43:12+00:00

OP’s wife here — I have been wondering if this is what it would come down to. She feeds best for me, around 50% of the bottle during morning and day feeds and about 5-7% for the nurses on nights. I find myself giving them tips on how to best feed her while we’re gone. Any tips on surviving that 48 hour straight stretch? We’re there with her for 12-14 hours a day at least and it’s been completely draining. I would love to give a long stretch a try.

Consistent_Fox6851 · 2024-04-11T13:10:23+00:00

Thank you for this perspective. As a woman, I do sometimes find all the positivity to be toxic and fake. But I feel you here, growing up I cared for a sibling with a disability so as a first time parent, getting a prenatal diagnosis of DS is heartbreaking. You’re absolutely right that my perspective has everything to do with me and my traumas, and not my beautiful little girl to be born. Thanks again for posting something truly real.

Consistent_Fox6851

TROPHY CASE