Our NICU Story

[@idamcgraw4880]

Her newborn pictures are so precious, brought a tear to my eyes . Youre a wonderful mom and you have a beautiful family ❤❤❤❤️

[@Freyasluckyarm]

Thank you so much!

[@biddiemutter3481]

Beautiful child

[@kathryndomer2109]

Frea is a trip today for sure. She made my day.

[@TCU1]

Be still my heart! Tiny, precious Freya ❤❤❤❤❤

[@queenbuzybee4074]

That’s quite the story! I also believe anyone does better at home - even pets. You were so lucky to have that doctor at that time. Freya is such a joy! Thanks for sharing!

[@Freyasluckyarm]

Absolutely!! We were very lucky

[@suemuster9826]

She was beautiful way back when. She still is. Love you all. Thank you for sharing her journey.❤❤❤❤

[@Freyasluckyarm]

Our pleasure!

[@susden9654]

Oh my goodness, her newborn pictures are so beautiful. She was so tiny. 💝

[@Freyasluckyarm]

She was so tiny!

[@tinahauser8864]

She is so adorable! Thank you for posting these videos. I have learned so much about a syndrome that I never knew existed before.

[@Freyasluckyarm]

You are so welcome!

[@crystalIzed333]

Awww that is fantastic he let her go home! She is doing fantastic!

[@flossyflue4305]

I was taught to pass the G tube when two grandchildren had them due to heart issues, they just couldn’t suck and Mum couldn’t pass the tube, so it was down to me mostly. Their through all that now after their heart operations. It was a long road, I understand how difficult it gets. Freya is very cute, how did you manage emotionally, I feel you may be very strong, I feel it must make you stronger in some way, maybe you didn’t have much time to think with having Liam, Jessie and Fiona. Some people cannot manage anything medical, we found this which didn’t help much just like their Mum. I’m very happy that you shared these things, it really helps to understand as, each case of course is different. The name Freya is lovely. Making it her lucky arm is so intuitive. I follow your story as it is so interesting and am always pleased when there’s a vlog come through, seeing Freya’s development is not much different than my grandson whose heart operation left him starved of oxygen so he is brain damaged, compensated, but that doesn’t make it right. You do fantastic with all of your children teaching them about inclusion. It’s lovely to watch. Thank you so much!

[@Freyasluckyarm]

Thank you. I was a medical assistant and nurse assistant for my whole career so the medical stuff didn’t bother me. Emotionally I find myself just shutting down and dealing with it later. A kind of fight or flight response. In order to stay and fight I have to not feel anything.

[@flossyflue4305]

@@Freyasluckyarm I was in the nursing profession too.

[@mtrevino3993]

Precious! Those giggles made my day 😊

[@Freyasluckyarm]

So glad!

[@amandamaynard3514]

Shake shake shake Freya!!! That was an incredible story. Thank you❤ Gorgeaous sweet baby pictures!!

[@Freyasluckyarm]

Thank you. She loved her maraca

[@beckylindvall5801]

Freya has the most beautiful smile.

[@Jazzy.girl.Sarah2023]

Love her sweet smiles❤

[@kimcheek8027]

Freya is just too adorable! I want to hug and squeeze your little feisty cutie pie!!! ❤❤❤❤

[@paulinebowers6065]

Me too, I’d love a big squeeze from her 💝

[@paulinebowers6065]

You are one awesome mum, I really admire your patience, and strength. You should feel so proud of yourself, love to you❤ and all your family,

[@Freyasluckyarm]

Thank you so much!

[@amyb2646]

Thank you for sharing this, Marci! It is wonderful to see how far Freya has come. She was such a cute little baby, and she just keeps getting cuter! Thank God that doctor agreed that Freya should go home, I think that was so much better for you all. Sending you all my love and hugs! God bless you all 🤗❤️🙏🏻

[@Freyasluckyarm]

You are so welcome!

[@amyb2646]

@@Freyasluckyarm ❤️💕

[@sherry8894]

Awwww... How cute is little baby Freya! I just love her so much 💕💕💕

[@colleenford5398]

My gosh! I love seeing pictures of her when was small---er! With your NICU story it just shows how varied CDLS kids are. I also wath Sebastian and I have seen other vidoes of other children with CDLS. I love hearing her laugh! Much love to all! ❤❤❤❤❤❤😊😊😊😊😊😊

[@Freyasluckyarm]

Right?! Small er is right 😂

[@charlieoglesby3468]

Precious baby, now Precious big girl!! Beautiful kids all around. Thank you for sharing. You guys are a great family. Love to all. #fanforlife❤

[@katniss1968]

My son was born at 31 weeks gestation and stayed in the NICU for a few weeks. That experience certainly brings people together. Thank you for sharing Freya and your entire family with us. There are days (like today) when you just need one of her smiles to make the life better.

[@DianeLee-je7jm]

Those final giggles at the end are everything 💗 Thank you for sharing that story; so very happy you had a like minded Dr in your corner. As necessary as the hospital is, it is Home where we rest well (every 3 hours 😕) heal and thrive. Wishing you all a beautiful autumn

[@Freyasluckyarm]

Thank you I agree. 💜

[@tinas2597]

Your little miracle! She was a fighter from day one! ❤ Love her dark baby hair, too!

[@Freyasluckyarm]

Yes it was! I miss the dark hair.

[@elenarezuchova5649]

I was so happy to see her "shake shake shake"

[@Freyasluckyarm]

She loves any noise

[@barbhelle5481]

Freya was and is so cute. Your children are all good looking. 😊

[@Aria-f8u]

I love little Freya, she is adorable. .

[@Freyasluckyarm]

Thank you

[@patriciaharkin1571]

Thanks for sharing that with us Marci I have to say, your hair is beautiful tied up, you have awesome bone structure and you'd look amazing with a pixie cut.

[@Freyasluckyarm]

Thank you so much! I had a pixie and love it. Right now I am focusing on growing it our so I can get back to the Haiti had when Freya was in the nicu

[@Ladyunderoos]

She is so beautiful 💜

[@Freyasluckyarm]

Thank you

[@kathryndomer2109]

Hi family, I so enjoyed your Video today. The story of Freya is a beautiful one. You are a special family for sure. God gives Special Children to Special Parents. Your kids are great with her. God bless you all. Love you, see you tomorrow, love me. 💋💗🙋🏼❤️💕🫶🏻

[@Freyasluckyarm]

Thank you so much 🤗 I don’t believe that though. I believe we have great love for Freya so we change and grow for her

[@margarethyatt-yx1gi]

She wears such pretty dresses can you show her outfits more

[@maryjones1]

Freya has such a sweet smile, and her braids really suit her. I am happy that she is back in preschool; she really smiles brightly when you mention her day in preschool. 😊❤

[@Freyasluckyarm]

She loves school so much

[@deborahmundt5140]

Hi Freya is just such a beutiful little girl. Just looking at her makes me happy.

[@Freyasluckyarm]

Thank you so much

[@billstreat8235]

Aww so sweet, just love your videos I check them everyday. Steph has had lot of nasty rude hers. So I'm asking you please don't stop posting because of idiots. You guys make my day, after losing husband and my it killed me. I look forward to seeing all your kids. I found out I gonna be great grandma. Gives me something to look forward to again. Ty hugssss

[@Freyasluckyarm]

Congratulations on your great grandchild. It is a very hard life we lead them to add on people thinking they know better, or just being plain rude it is a lot and can be too much sometimes

[@Madcaps215]

Adorable!!

[@jeanettekennedy7433]

love her smile gorgeous girl

[@lindasprettypressons]

As always, thank you for sharing your experience. I absolutely love Freya’s laugh..it’s a beautiful sound ❤

[@jennifergragg1850]

Thank you for sharing your story with us! 💜💜

[@ΑΙΚΑΤΕΡΙΝΗΤΣΙΑΒΟΥ]

Σε αγαπώ πολύ μικρό μου χαμογελαστό πανέμορφο κοριτσακι❤❤❤❤❤❤❤❤❤❤❤❤❤

[@tanisha7801]

Oh my goodness when she put her hand up like “mom enough talking, I’m hungry.” 😂 does she puts her hand on your face a lot to get your attention or tell you she’s hungry? Idk why I just thought that was so cute. That and when she dropped her bell! It looks like she is in deep thought and then you can hear the bel fall and then like 3 seconds later you see her eyes like, “wait my bell” 😂 oh Freya 💕

[@Freyasluckyarm]

She does touch my face a lot. I love it

[@betsybabf748]

She was such a cute newborn baby! ❤❤. Low blood sugars is why my one twin was in NICU briefly. I just had to finger feed them the first 24 hours because they couldn't latch right away, but one twin had low sugars. The line was 50, and the other twin just made it at 51 so could stay in room with me.

[@Freyasluckyarm]

So close! Freya was in the 30s all night. She would get a little feed in and jump up to 50 then drop back down

[@jenxstv1067]

She's such an amazing little gal 😍

[@mariamckenna808]

Freya looks the same. Adorable. When I look at Freya I see a strong person. I have learned never to listen to everything a Dr tells me because when something is rare these Dr's are going by what they read. I've learned that we all are diff. I now go by how I feel not wha5 the Dr tells me I shld feel. In my opinion just like every disabled child with the same disability so is every parent. The way the parent and family interact with the child is wha5 determines how successful the happiness and well being of the child will be. Freya is special. She is unique. I'm sure Marci you have learned so much more about urself since Freya was born. Freya has a determine look. Freya u can see is content. Happy. What's so nice about the kind of parent you are is tha5 you allow Freya to be Freya. That's beautiful. You do not get whacked out over things that may whack out another parent who is worried about this or that happening. Being this way allows Freya to feel free within limits naturally. You have educated urself n I'm sure everyday u continue to learn. I feel the way you treat Freya allows her to feel just like who brother n sisters. Good for u Marci. I am one of those mothers who limited my kids when they were you fearing the worst. I can't help myself. So I admire the way u parent. God Bless each of you. Wishing each of you a wonderful peaceful day. Love is magical. There is nothing that beats it. Love Love Love..u can't go wrong. Freya has mature so quickly lately U can see this progress Def more since going to school. She just is amazing. U got a real fighter. Freya does not allow anything to get in her way. Who is like that I think it May be you Marci. You will always found a way if possible

[@Freyasluckyarm]

Thank you so much 😊 I do try to let my kids be themselves. They are cool little humans

[@dzenanzenovic-fl4bw]

I LOVE YOUUUUUUUU PRINCESS FREYA ❤️❤️❤️❤️❤️

[@vbrandon1858]

I just love her out fit!! She's so adorable and her hair,!😊❤❤ Love your family! Your such a very good mom! ❤❤❤hugs 🫂

[@DesAMowadeng]

I'm not entirely sure if that shake of the head no was intentional to the idea of a feeding tube or not but if it was she's pretty determined not to have a feeding tube! I don't know if they would fit or how Freya would feel about it but there are shaker socks that you can get for babies with bells in the toes. Another option would be wearing them on her hands but not being able to grip with her Lucky Hand might be more annoying than fun. I was thinking something like that where she enjoyed making the noise would encourage movement and build strength which definitely would help with standing and walking if the socks were on her feet and give her a boost in strength to pull herself up to standing to make that a little easier if she had them on her hands and used her arms to make the noise.

[@Freyasluckyarm]

We used to have the socks and she was not a fan 😂

[@DesAMowadeng]

@@Freyasluckyarm Had a feeling...I could see a few reasons from getting to know her on here why she wouldn't. There may be other options that are more appealing closer to bracelet or ankle style. Unfortunately, trying to find the right thing gets costly when they are items found mainly online.

[@Carolhealthfan28823]

Good morning/Afternoon

[@Mari-ek7su]

😍💜

[@celesteroberts5794]

🙂🙂

[@IBELIEVEINME3]

💗

[@crystals7979]

I was wondering what side,tummy or back does Freya sleep better

[@mariamckenna808]

Do any of ur children have ur dimples?

[@Freyasluckyarm]

All 4 of them do and I love it