Half A Year

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It feels like just yesterday that Lilliann was born but also feels like an eternity since she spent time in the NICU. She’s meant to be home and that’s where she is happiest! It’s been 6 whole months since she blessed earth with her presence and the world is a brighter place because of it. We couldn’t imagine life without her! She steals the hearts of everyone she meets and we just love her to pieces! A year ago I found out we were pregnant with our blessing so it just blows my mind she’s been alive for over half a year already! Blink your eyes and they grow up! November is prematurity awareness month. I never noticed before but prematurity is discussed in television quite a bit. One of my favorite shows growing up “Rugrats” has a preemie baby by the name of Tommy Pickles on it.

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If you told me a year ago our tiny premature baby would teach us so much in her short life I would tell you you’re crazy. Having a premature baby teaches you patience, endless love, strength, faith, hope and courage. These tiny babies are the true hero’s fighting for life everyday. They have such resilience! Lilli is weighing in at 11lbs 7oz when she was checked last! 💪 She’s come a long way since birth, only baby we know almost 12x her birth weight at this age.

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I’ll be trying to post an update on a monthly basis. October was a busy month! With Work, Halloween, appointments and lots of snuggling! We’ve also tried oatmeal and banana for the first time with Lilli and it went pretty smooth but for now we just feed her oatmeal in her bottle. She loves it, and the cats love cleaning up after her food messes! She even helps hold her bottle sometimes…

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When you start feeding real food and oh boy do baby’s get messier and stinkier so she gets a bath every other day. She loves bath time! Lilli giggles lots when she splashes us especially! We met with an early childhood intervention pediatrician, occupational therapist and physical therapist who are amazed at how well Lilli is doing! She won’t need to be seen by them for a while! We still meet with an educational therapist twice a month who sees no delays with Lilli’s development so far! 🙏  She is reaching milestones for 3 and 6 month olds. We also got her eyes checked again by the specialist and she is right where she should be for her age and won’t need to be checked again for 9 months! This appointment was much less invasive than the last appointment thank goodness! Lilli also had her first dose of synagis which is a vaccine that gives her anti-bodies to RSV which is just usually a cold for adults or full term babies but for preemies it’s deadly and if contracted almost always results in hospitalization and well we spent 75 long days already with her there and never want to go back. Lilli will have her 6 month check up this week. She will have her 6 month vaccines and lab work to check her hormone levels. We’re hoping they can split up her shots so she doesn’t receive such a heavy “cocktail” at once, since last time resulted in a high fever and an ER visit so we will see what her pediatrician suggests. 👩‍⚕️🤔

Lilli’s 6 month update

  • Giggling harder 😂
  • Blue eyed red head cutie 💙❤️
  • Still drooling a lot 🤤
  • Growing into size 2 diapers 💪
  • Loves to eat new things 😋
  • Major thumb sucker 👍
  • Still enjoys family walks if weather is nice ☀️🌞
  • Blows raspberries, chatty and mimics you 💋
  • Loves standing and dancing with Daddy 💃🏻
  • Rolling a little from tummy to back and back to side 🙌
  • Fights her sleep hard but sleeps at least 7 hours if not more every night 😴
  • loves to wake up and eat then have her morning nap 🍼
  • Found her toes and pulls her socks off 🧦👣
  • Now likes her binky if she is extra tired 💗
  • Likes to play in her walker and jumperoo 🐵
  • Plays with her toys & light up ball 🚨
  • Loves her Sophie giraffe teether toy, it goes everywhere with her 🦒
  • Playing with her kitties & getting head kisses from her little fur brother PJ 😻
  • Loves to be called beautiful or pretty and I love you, she will smile like crazy 😍
  • Umbilical hernia is completely gone 🙏
  • Fitting snug in 0-3 month clothes and perfect in 3-6 month 😫
  • We have too much fun playing dress up but her Dad doesn’t like all of her bows 🙄🎀
  • Lilli loves her ducks! 🦆💚🏈💛

Lilliann loves to be outside especially staying active with her Daddy! He helps get all of her energy out, so she sleeps well for us at night. It was nice to enjoy the outdoors as a family since the weather WAS cooperating! We aren’t looking forward to the cold months ahead where we will stay isolated at home away from all of the germs that come along with the season! 🌧☃️❄️

As Lilli gets older the less she looks like her dads twin and more of a perfect mix of the two of us! She is just beyond perfect for all the odds that we’re against her. She exceeds our expectations day after day. I may be biased but she is the cutest, smartest, happiest baby I’ve ever met. I love that she isn’t as needy as we were warned preemies could be. She’s truly a miracle baby! 🙏👼

(Lilli compared to Momma & Daddy, Lilli and I were wearing the same knitted outfit 27 years apart)

We had a fun Halloween and look forward to eating our little hearts out for Thanksgiving! (Our favorite holiday) Can’t wait to feed Lilli mashed potatoes for the first time! We also have a lot to be thankful for this year! 💕

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There’s No Place Like HOME

Happy NICU awareness month! 💜 I never once pictured myself being a NICU Mom, granted I don’t think any parent expects or wants their little one to be a NICU baby but I’m thankful it’s there helping keep these precious lives safe! It takes so much patience, energy and faith to survive that NICU journey, for some it’s short for others it’s long and for whatever reason it instantly bonds some families who have been through it and can relate. Thankfully our miracle graduated from the NICU and came HOME where other angel babies aren’t so lucky! 👼 So I now make an effort to pray for families going through the rollercoaster of a NICU stay.
I’ve been slacking on posting updates but there really isn’t much to update on our warrior princess (no news is good news) other than the fact she is growing amazingly and is thriving! Lilli is 4 months old now & 6 weeks adjusted! At our last lactation appointment 3 weeks ago Lilli was 6lbs 12 oz! We know for sure she’s well over 7 lbs by now! The lactation nurse was so proud of us and amazed how healthy Lilli looks for being a micro preemie. We can’t wait to see how much she weighs at her next doctor appointment in a a little over a week! Not looking forward to her 4 month shots but she will be fine! She’s a trooper! That’s the least she’s had to endure in her short life so far. We’ve been home for well over a month now and she’s happy, healthy and ALIVE! It was so much easier to keep up this blog and with her progress when we spent so much time in her hospital room but since we’re home and I’m officially back to work there is no time to write when all my spare time is soaking up all of the baby snuggles I get before and after my shifts! Thankfully for now she gets to stay home with her daddy which makes me days at work easier with daily updates from him. It’s so nice not having to go to the hospital daily to see our daughter. Now we just love on her constantly each and everyday, during every waking (sometimes sleeping) moment! I’m writing this as she sleeps on my chest. Lilli loves to pretty much always be held, we can’t blame her though when she had spent 75 days in a place where she was almost isolated all the time. She loves being home and has officially started smiling at us and giggling in her sleep! She’s such a miracle! Lilliann is eating 4oz at each feed which is amazing since she barely was eating an ounce when we first brought her home! Our chunky monkey loves her food! We comfort nurse (without shield) 👍💪 when she’s done eating her bottle of my pumped milk to get her sleepy. It really doesn’t bother me that she never got her full feeds from me since I know she was getting my milk in other easier ways for her. 😍 No shaming on a well fed baby, we still have a good bond!

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We received a statement from our insurance about Lilli’s bill during her hospital NICU stay! Let’s just say she is our almost million dollar miracle baby and worth more than any house we could ever afford! Holy moly is intensive care expensive but worth it! I’m in the wrong career apparently! 😉😂 We are thankful Lilliann qualified for assistance to help us during her hospital stay so hopefully we won’t have to pay much out of our pockets since she met the mark by a few hundred grams weight wise! Pays to be small I guess! 🤷‍♀️
My hospital stay wasn’t very cheap either! It’s expensive to stay alive and bring a little human into the world! 🙄

Lilli makes so many sounds and chats all the time! Gives high pitch squeals when she wants your attention and she grunts a lot and sounds like a goat, a “Lilli goat” get it?!? 😝 She has long arms like her Dad and long legs like her Mom! So curious how she will grow into everything!
Lilliann is fitting in all newborn clothes and we are having to retire all of her preemie outfits! She is even fitting into some 3 month clothes! Which I honestly can’t believe, time seriously flys! Lilli’s umbilical hernia is healing well and hopefully will be gone in the next few months! 🙏🤞This month we have to take a trip to OHSU nephrology in Portland to make sure Lilli has no underlying issues (kidneys) with her elevated blood pressure and other lab work that didn’t seem perfect from her newborn screen. I’m sure all will be well since she really is overall healthy! Most things they question at first these little humans typically grow out of. So keep us in your thoughts and prayers for our next adventure. 💗 Also happy first duck football game of the season! Can’t believe it’s that time of year already! I love this town during football season! Until next time! ✌️ GO DUCKS!

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Five Pound Wonder Child

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Lilliann is officially 5 pounds!!! Which it’s great seeing her gain weight despite being a spit up machine! She’s the hardest baby to burp we’ve only heard a single burp or two out of her since she’s been feeding orally. The neonatologists did an Ultrasound on her stomach to rule out pylorus stenosis. This was the first time we were informed of anything before they did a scan. Felt great to be in the loop for once. Lilli’s results are normal, she’s fine and has a functioning tummy, just has baby reflux and will hopefully grow out of it and not have it chronically like her Dad. She also has an umbilical hernia (outie belly button) from all of her straining, she should grow out of that too! Prematurity is so crazy how all of these things that could be wrong tend to go away on there own thanks to time.

564C197A-49FA-4064-920D-F8DE033AEAB8(Red headed spit fire!) 💋😍🔥 ❤️

This NICU experience has been grueling and rewarding all in one. Garry my husband has been my rock, my voice of reason through everything! I would not have survived this journey without him! He’s been so helpful and I haven’t given him enough credit for what he does and has done for us. He has set up every piece of baby equipment with ease and chauffeured me around to the hospital, work and home every day for the last few weeks without complaint. He would visit her daily while I worked and spend hours bonding with her, feeding and listening to music and singing her songs! It has really helped me be able to work without stress or worry knowing he was around her and her being in the best hands, he would even send me daily pictures to make my days away that much better!

74785D18-E940-4D38-B47E-1B3ECE01D99D(Cute monkey feet pic her Daddy sent me at work) 💖🐵💤

Lilli is 39 weeks gestation today! Now that she is a solid 5 pounds, we feel even more comfortable taking her home finally! We technically will still be bringing home a preemie not just a newborn, newborns can’t usually go home unless they are over 5 lbs, she just hit that mark this morning. She has more needs than an average newborn (medication & etc.) We can’t wait to not have alarms and codes going off all of the time, the NICU seriously can leave you with ptsd, it’s an intimidating place. We kind of relied on machines to make sure her stats were all ok so it’s a little nerve wracking that she won’t have those but not having any cords in our way will be amazing! We are so used to loud sounds and machines so it will be strangely quiet and peaceful when she is home, it will be like a vacation for her with no random people messing with her constantly. We’re thankful she has a strict manageable schedule, hopefully it will make our lives easier. We’re ready to be done with the hospital life and be home with Lilli and do nothing!!! Not having to leave anywhere will be amazing! We can’t wait to fully focus on her and only her, it will be great! It’s going to be crazy to take her home and adjust to our home life. Our cats can’t wait to meet their two legged sister! PJ our youngest kitty has been testing out all of her baby gear and keeping it warm for her. 😻

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Our moms (Lilli’s new grandmas) have and will continue to be be a huge help in making sure we have everything we need! Including constant amazing support. My mom is willing to take time off of work to help us once Lilli is home. Garry’s mom is having surgery soon so we’re praying for an easy healing process for her. Once Lilli is home we want her to get in all the snuggles she can before she won’t be able to until she’s 100%. Once she is better she will be our full time care giver for Lilli so Garry can get back to work eventually. Preemies are advised not to go to any day care until they are over 2 years in age. So we are blessed Garry’s Mom can help us out there when we need it. For now I’m glad Lilli and Garry will build a strong special bond once I go back to work in a few weeks he will be Mr. Mom! 😉💪
We can’t wait to go on walks and take Lilli out when she’s a little stronger in a few weeks. I’m glad she’s going home in the summer time where illness is less and weather is nice for going outside. It will be such an amazing thing for her to be outdoors and breathing that fresh Pacific Northwest air into her little lungs for the first time in her few short months of life! We Love our stroller and infant car seat combo, we ordered them separately not realizing they connect and match perfectly! I love when things like that happen! 🖤 We’re all officially set and ready for her homecoming! 🙏

28ECDEFF-1E07-4E53-A8A5-C56AB861A861(Jogging stroller/carrier combo ✌️)

Happy 2 Months Lil One

Oh my goodness where does the time go?! Today July 2nd was Lilliann’s original due date! & Now she’s 2 months old and 37 weeks gestation! How crazy?!

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She will be getting her 2 month vaccines here shortly while in the NICU so she can be monitored for any after effects like apnea & breathing, etc.
Lilli’s eye exams are still going well with no retina issues just prematurity, which is expected. She doesn’t need them weekly any more and will get them bi-weekly. She is over 4 pounds 8 ounces and still climbing closer to 5 lbs every day! One doctor said in a few days we may even remove her NG tube since she’s been feeding so well orally, makes me kind of nervous. Hopefully we will be going home with our little peanut in a few weeks at most! We just have to perfect the feeding and not have any Brady/apnea episodes for a solid week.

We have survived our NICU stay for over 60 days and still counting! My oh my are we exhausted though! My new work routine and hospital visits still are keeping us busy! This last week was insanely busy! Not only did I go back to work and had to work a shift on Garry’s birthday yesterday, all while juggling everything else, we got our kitten PJ fixed! So caring for him and dealing with everything else has been crazy! So thank you for the prayers just keep them coming! We definitely need them!

A52F8376-547F-4FBE-A2BA-69D0F0CC6948(Sweet praying hands) 🙏😍

If people knew the struggles and internal battles people face and fight on a daily basis they wouldn’t treat each other so poorly, everyone needs to try harder on making the World a better place for all! Everyone we speak to about our current situation says how we are doing this all so well and gracefully. We can’t be nervous wrecks, it would only make it worse. We have to stay strong even though somedays we do truly feel defeated and like we’ve failed some how! It’s such a crazy learning experience. This journey will truly make or break some couples. It has really only made Garry and I stronger, individually and together as a whole. We have our moments (we aren’t perfect) but at least they are minor and we keep reminding ourselves it’s only temporary and will be over soon and we will look back and think how amazingly fast it all went by!

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Lilli still has episodes of Apnea/Brady’s while getting bottle fed occasionally, she’s still getting the hang of it all. I read an interesting fact today…Until they’re 6-7 months old, babies can breathe and swallow at the same time. Adults aren’t even capable of that. It takes a lot of coordination if you think about it, breathing, sucking and swallowing all in one and she is doing it when she shouldn’t even be born yet! Preemies are simply amazing!

We love most of the nurses and have only had to ask to not have 2 be repeat nurses out of the 90 that work in the NICU, that’s not too bad. If you don’t mesh with certain ones it’s best to speak up since they are caring for our child for now & we only want the very best for her. It is hard co-caring for Lilli at times when you have different ideas and advice from all of the nurses and 4-5 different neonatologists that see her.

IMG_0591(This is in all rooms and boy is it true!)

One of our friends mentioned how we basically get whiplash from being told one thing and have it changed when the next shift starts. We’re always adjusting. You have to constantly let everyone know your wants and needs, it really trains you communication if you lacked with it before. There used to be a window the nurses would write on for Lilli’s care needs, info, requests and the head of NICU made them quit doing it so there has been a lack of knowledge based on her care without it. We enjoyed seeing her progress with it so it’s sad they took it away. Some nurses don’t listen to us or care what we have to say it seems like at times. Some also take more charge than others, with things we can normally do ourselves and others give us independence and privacy to parent on our own. So it really is a day by day process, one day you get it right other days you want to scream and run away with your child. It tests your patience, big time! No one wants to be told when/what you can and can’t do with your baby or when you’re right or wrong really. We’re learning though and do appreciate most of the help and advice we receive. My Mom works for peacehealth so she wrote head of women’s care at the hospital and just gave some ideas and insight on NICU parents lives and how they could really make it easier during our long term stay! Little Lilli is blossoming into a very strong flower! If one thing in our life finally had to go right we’re glad it’s her! 💞

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Baby Steps

What a scary, cruel world we live in! Being a parent (especially a new one) makes evil/sad news stories hit you even harder than before. I pray for the world and I pray our daughter is a bright light in it, I know she lights up our lives and hopefully does to many others in her time here on Earth.

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(Our Earth angel Lilliann, already cheering up the place) 💕👼🎀

There’s still so much to do and so little time! we at least accomplished a lot the last few days and got some big things checked off of our list!
It is seriously hard work balancing life at home and our new life at the hospital. People are always telling us you should do it like this or like that. No one knows how it really is unless you are in our shoes so we appreciate the advice but it doesn’t always work for us. We’re navigating our new life as best as we can. One thing I don’t understand is the amount of surveys and questionnaires we are asked to do lately regarding our recent life events. Like really?! Who seriously has time for that kind of thing? We already have so much paperwork to worry about…

We did accomplish one big baby item and got her changing table/dresser set up! What a task that was! Thank goodness for my puzzle loving Husband and his handy skills and tools!

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(Tada!!! All done! Only need a few more finishing touches, She is a fancy baby already!)

Lilliann is now 3 weeks old! Officially over 31 weeks in gestation! She is still gaining weight and they even increased the amount of calories she will receive to help her grow even bigger and faster! She is 1155 grams which is about 2.8lbs! She is also 14.5 inches long! That’s an inch and a half increase from her birth length of 13 inches! One minor set back we have encountered is Lilli was using a lot of oxygen via her nasal tubes so they went ahead and put her back on Cpap for about a week or so. It will only benefit her so we aren’t worried. Even though she was gaining weight every day, she was basically using more calories trying to breath than focus on growing to her maximum potential. So she is getting a little bit of a break to get those lungs stronger! Taking baby steps is all. Garry thought the Cpap came off too early in the beginning anyway, he has a great fatherly intuition. 👌 This little set back is totally normal for premature babies to go back on and off the Cpap aka her “snorkel gear!” Some babies will be off of it for weeks then all of the sudden need extra help temporarily. They are the ones deciding what works best for them afterall.

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Everyone loves Lilli! One of our favorite nurses is so sweet to her! Treats her like her own! She says some babies that come to the annual NICU reunion recognize their nurses voice. How sweet is that?! She is known by a few nurses as a pixie badass! LOL that’s our girl! Today the hospital care chaplain came to her room to introduce her self and blessed Lilli with some beautiful words! We are so happy with the amount of care she receives! The other night during Lilli’s daily care and kangaroo time she initiated me into parenthood by leaving me gifts of a giant continuous poop and yucky boogers! It’s amazing how things that usually gross you out are totally fine/normal with your child. They do share your DNA after all so it doesn’t seem as nasty. 😉

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(All cleaned up from her messes, content on Mommy’s chest) 💕

Here’s a touching article a nurse shared with us…
http://www.peekabooicu.net/2013/07/confessions-of-a-preemie-why-i-am-different-than-a-full-term-baby/

So much can go wrong in pregnancy to cause a baby to be born early. Some people cause it and others it’s out of their control, like in my situation. I think in my case since the new extra organ known as the placenta was basically diseased from the get go which is why we have such a little baby girl, she wasn’t getting the full amount of blood flow and nutrients, which could be why she was always measuring behind 2 weeks is my theory. Outside of the NICU they have a “wall of hope” it has pictures up and down the hallways full of graduates of the NICU and what their birth weight was and how early they arrived in the world. It’s really awesome and truly does give you hope seeing all of the healthy children that they are now. Some were bigger and younger than Lilli and some were older and smaller so it really varies, it’s quite interesting.
I really wish we could have a live steaming video on Lilli at all times, leaving her in the NICU is hard not because we are really worried about the nurses or doctors but more so the other parents and the sketchy people that come around, some are unfortunately unfit to care for children due to their own struggles and battles they are fighting, hearing some of the nurses stories of things that they have seen is truly heart breaking. That’s why the NICU has a 24 hour trial/test to take the baby home. Where you can receive extra help if needed. Some of those uncertain parents don’t get the choice or option of opting out but I feel it would be good for us to do it for being new parents, we’ve hardly been around newborns before especially a preemie. It’s like an official parenting training course, where many parents are thrown into it, you either sink or swim!

I’ve mentioned in previous blog posts that if visitors have been exposed to illness or are sick or recovering, please don’t visit. Nurses could even expose her. Lilli had a sick neighbor recently and the same nurse cared for both babies. Makes a paranoid Momma even more nervous, praying the nurse takes every precaution and protocol seriously. 🙏 We just want to take a healthy thriving baby home! 🤞 No we can’t protect her from every germ and in a way exposure helps build the immune system but until she’s full term I don’t want to take any risks!

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(Calmed her down from being fussy)

Where Does Time Go

I seriously can’t believe that we’re almost half way through the year?! Where has 2017 gone?! This time last year we were in full wedding planning mode! My oh my can a lot happen and change in one years time?! If we thought time was flying before, we had no idea how fast it would soar once Lilli was born! Time is just slipping away from us most days! We knew my pregnancy was going by quick but now she will be walking and back talking before we know it! 😉 We can totally wait on that to happen, we really don’t want to rush anything! We’re enjoying each day as much as we can! We are so glad that Lilliann won’t remember any of this NICU phase. She will only remember it by the pictures we will show her. We are going to raise her to remember how fragile and precious life really is. This will all be behind us and just a memory for us all one day.

Guess what was in the local weekend newspaper?!

Lilliann’s Birth Announcement!

IMG_9180.JPGOnly girl born that day @ Sacred Heart! (Well that was at least announced)
💕🎀💗 #Girlpower #prettyprincess #babyfighter #lilwarrior #tinybutmighty

Last night Lilli and Daddy got some long kangaroo time/cuddles and kisses in. It just melts my heart to see their bond already growing strong! He cherishes her and she has him wrapped around her little fingers already! He is also so protective already! (when he found out we were having a girl he had to buy another powerful gun to add to the collection right away) 😂😉 She will definitely be a Daddies girl! He loves to talk to her and sing her little songs and can’t wait to act out her story time with all of his many crazy different voices he can do! She will love it and him so very much! Can’t wait to see their love keep growing!

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After he finished holding his princess, Lilli was making the cutest yet funniest grunts we have ever heard! (You can’t even get mad at the fussiness) The nurse said she sounded like a baby goat, I chimed in and said those grunting sounds she makes remind me more of a Mad TV sketch/character. When Mo Collins plays as Lorraine Swanson. YouTube it if you don’t know what I’m talking about. You’ll get a good laugh. 😂 She is going to be our little comedian! 👌 We just love every little thing about that nugget of ours! She is our universe and our everything! We wouldn’t trade her for the world. I was so scared to bring her into this dark and crazy place, just watching the news gives me anxiety! We will raise her right though so she can be a positive light in the world, it really needs it! ❤️🌎

Lilliann is still doing great and gaining weight and not needing as much oxygen! Keep on growing little lady! I like simple easy daily updates! 👌💕

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Look at all of that cute soft furry shoulder hair! Those forehead wrinkles, expressive eyebrows and soft squishy lips…🤤👌
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P.S. Don’t mind her feeding tube by her head. Oh boy, we can’t wait for all of the tubes and wires to be gone! And pick her up as we please. That poor medical tape on her face is really blocking some of her beauty! 🤦‍♀️💜💁