Happy October!

Happy 5 Months to our Warrior princess! She’s reaching milestones for her adjusted age which is 2 months. She’s smiling all the time and giggles at you if she finds you really funny (like when mom and dad dance or make weird noises, which she likes to imitate.) She is scooting (you place her vertically and she makes her way horizontally) and loves playing with her toys and swing. Lilli is getting into that really fun stage which is nice since it’s felt like we’ve been in a forever newborn stage. She’s growing like a weed!!! She is growing out of her newborn clothes quickly and is wearing size 1 diapers! She loves to eat what more can we say?! πŸ˜‚Β We love this time of year and Lilli will be a cute skeleton for her first Halloween! β˜ οΈπŸŽƒ

Lilli’s 5 month update

  • Smiles & giggles 😁
  • Starting to drool a lot 🀀
  • Loves to eat πŸ˜‹
  • Still loves car rides (mostly daddy’sΒ car) πŸš™
  • Loves family walks outside 🌲
  • Loves music 🎢
  • Eating her hands πŸ€™
  • Hates her pacifier ❌
  • Hates getting woken up by her kitties 😾
  • Hates getting boogers removed (so does Daddy) πŸ˜‚
  • She is imitating noises πŸ‘‚
  • Loves her swing ❀️
  • Loves to be held πŸ€—
  • Sleeping most of the night (for now) 🌚
  • Follows you and her toys with her eyes πŸ‘€
  • Loves to play with her piano mat & kick 🎹
  • Holds head high especially in her bumbo chair πŸ’ͺ

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The pediatrician gave us the ok to start introducing food flavors to her. Like tastes of avocado and other veggies! I can’t wait for thanksgiving this year to give her mashed potatoes! We already have most of her holiday outfits purchased and can’t wait to put her in them! We got her newborn photo shoot pictures back from our photographer and they turned out great! Since we didn’t get a maternity shoot we had to go all out for her newborn pics!

(Lilli was only 5 1/2 lbs here & technically 2 weeks old)

Lilli recently had a few big appointments last month and has one more eye exam here locally thank goodness there’s a pediatric opthamologist in town so we don’t have to make another Portland trip to OHSU. We went to her nephrology appointment already up there and everything went great! Lilli no longer needs to be on blood pressure medication (cut off cold turkey!) She will only need one follow up BP check in a few months (they are coming to us thankfully.) The reason she had BP issues to begin with is honestly shocking! We met with a specialist who only deals with this specific problem in babies and he’s the best in the world at it! Apparently it’s caused by the plastic fillers or plasticizers they use in medical equipment to make the plastics soft, things like IV bags, nasal cannulas, etc. These poor little babies systems can’t process the chemicals which then leads to BP issues. Once they are away from the medical devices and hit 20 weeks they tend to outgrow the issues thank goodness Lilli did just that! It’s so sad to think that some of these tiny babies have to deal with stuff like this when they already battle so much! Europe banned these plasticizers in 2004. Get with the program America!!! There was a giant spike in the late 80’s-90’s of these BP issues in preemies and they finally found the culprit recently and are hoping to phase out of the use of such plastics! πŸ€žπŸ™Were praying Lilliann has no long term issues with it! Here’s an article if you’re curious about it more.
https://www.medicalnewstoday.com/articles/296504.php

(We celebrated by pigging out at the Cheesecake Factory!) πŸ˜‹

Lilliann also recently had her 4 month exam and vaccines and we were so shocked at how much she weighs now! We both thought for sure she would be in the 8lb range…NOPE…WRONG! She weighed 9 pounds and 2 ounces! πŸ’ͺ She is probably pushing 10lbs by now since that appointment was over 2 weeks ago! Lilli is in the 50th percentile for her combined weight and height and her pediatrician is so pleased with her progress! She will have her 6 month appointment in November and will get updated lab work done and will receive her 6 month vaccines including the flu shot and RSV antibodies called Synergix. The vaccine cocktail makes me nervous so we may split them up monthly. Poor Lilliann had her first fever and ER visit after her 4 month shots. Her fever spiked over 103 degrees (she was burning up pretty rapidly) and was having issues breathing so we were advised to get her evaluated. After a few doses of Tylenol she was golden! πŸ™ Thank goodness! Her little body got 4 month shots when she was technically only 6 weeks old. It was a lot for her system to handle! Her shots were way worse than the blood draw they did at OHSU. She’s such a champion! We are so proud of our little HERo!

Lilliann is sleeping better and better each night which is amazing! Her Dad helps a lot by keeping her awake and active during the day! So round of applause for Daddy Garry! She loves him so much! They have a special bond! When she fusses he just has to pick her up and she falls fast asleep in his arms! They are so cute to watch together! Really melts my heart into a little puddle! We are so blessed to have such a caring, loving and helpful man in our lives! Our world would be so lost without him! We recently celebrated our 1 year wedding anniversary! It was low key which is just what we wanted after our crazy year! 😜 We watched movies as a family and ate home made enchiladas! 🌯 I’ll try and update this blog monthly! πŸ’• Until next time! ✌️

Video of Lilli smiling 😍

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There’s No Place Like HOME

Happy NICU awareness month! πŸ’œ 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! πŸ‘Ό 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) πŸ‘πŸ’ͺ 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! πŸ˜‰πŸ˜‚ 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! πŸ€·β€β™€οΈ
My hospital stay wasn’t very cheap either! It’s expensive to stay alive and bring a little human into the world! πŸ™„

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! πŸ™πŸ€žThis 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. πŸ’— 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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3mo=1wk

Guess who is 3 months old now?!? (As of yesterday!) Lilli is still a tiny little peanut weighing in over 5lbs 11oz (checked late last week, she’s gaining close to an ounce a day!) Lilliann is still in preemie clothes and diapers, newborn sizes are still a little baggy! Crazy to think that right? How is a 3 month old not even in newborn sizes yet?! At this rate she won’t fit into her 6 month clothes probably until she’s a year old! πŸ˜‚ No but really we are enjoying her petite little size a lot! Easier on our backs! πŸ˜‰ Having a preemie is crazy because you have the actual age which is 3 months but her adjusted age is 1 week old! Always have to remember that as she reaches certain milestones later than other babies her age. She’s still a little too small for her bouncer and swing and doesn’t really like them yet, she would rather be held. Lilli is certainly tiny but mighty! She is so very strong! She can get out of any swaddle, velcro and zippers you name it! We call her Houdini or should we say Loudini! πŸ™„She always needs to have at least one arm out to be comfortable. She’s a wiggle worm big time! πŸ’ͺ

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We are all doing well keeping her on the NICU 3 hour schedule, diaper change, feed then sleep! She occasionally wakes up early since she’s a growing hangry baby sometimes! Garry and I try our best to take “shifts” every 6 hours or so that way we can get a good block of sleep. Sleep is so important for your sanity!!! We’re a pretty good team I’d say! Exhaustion is no joke. There has been a rare time I thought about wanting to take her back to the NICU to get some good sleep. 😝 We do miss the nurses during the night and they have a strict return policy one nurse told us as we were leaving the NICU with LilliΒ πŸ˜‚ I have no idea how single parents or how people with multiple kids do it! That’s impressive! We occasionally are getting help from family with rest and food! Which is so important to survive the newborn stage! We are pretty much handling everything very independently. We are enjoying this private time as a new family of 3 (actually 5 if you include the cats!) as much as possible and adjust before I go back to work in a few weeks! Surprisingly we are used to no monitors now. Thought we would have a harder time, we’re not even using her motion monitor right now and are fully focusing on her. You could say we have been watching her like a hawk! πŸ¦…πŸ‘€

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All of her appointments she’s had since being discharged have been smooth for the most part! Lilli has checked out well with the pediatrician and lactation. We had a newborn photo shoot done a few days ago which was a lot of fun, can’t wait to share them eventually! She was surprisingly wide awake for most of it! Lilli also passed her hearing exam! Wahoo!!! She had an eye exam that was pretty traumatizing for all of us! She’s had them before but we stayed clear from the NICU while she had them previously. This one we couldn’t avoid so we got to see it all up close and personal! They basically use a metal tool to pry her eyes open and then use a long q-tip to roll her eye balls all around to make sure the retina is still attached, which hers are and her eyes are also looking mature and we won’t have to get a follow up for a few more months. Seeing her in discomfort and not being able to do anything to help her was seriously heartbreaking! Tears were shed by all of us!Β We have some busy upcoming months coming our way! We have 2 Portland trips to OHSU in September and October! That should be a crazy little family adventure! Thank goodness she loves car rides and her car seat! I think the sound of her dads motor is soothing like a kitten purring! πŸ˜‰πŸ‘ŒπŸ˜»
We are also starting to meet with a early childhood intervention specialist to track her progress and milestones twice a month! If time didn’t already fly by it especially will now that we’re staying so busy! The specialist mentioned how calm and natural Garry is with little Lilli! It warms my heart to see other people notice what I have all along. He’s such a good Daddy! It’s so cute! He never missed a visit and saved every single day pass to the hospital since I was admitted up to day 75 in the NICU and put them all in a little book with notes on them. I just love this man to pieces! 😍 So glad Lilli already has a good man in her life who takes good care of her! (She never needs to date after all) πŸ˜‰ Makes me feel so much better about going back to work knowing she’s in his capable hands! She loves her Dada! πŸ’žπŸ€—πŸ’œ

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Lilli is a pretty easy baby! Thank goodness! She really only cries when she’s hungry, dirty and wants to be held. Can’t complain about that one! Lilli hates vitamins (they are gross I don’t blame her) but loves her blood pressure meds and loves bath time! She likes to watch tv and yells at us when we’re in the way of her view! πŸ˜‚Β Lilliann makes so many noises and it sometimes sounds like she laughs at just the appropriate times, we can already tell she has quite the personality! πŸ‘ Another favorite of Lilli’s is being outside.Β We’ve taken many family walks outdoors so far and they are the best! We feel so complete being able to finally do that! There will be plenty more in our future! πŸ’—

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Home Sweet Home

There is truly no place like home!Β After 75 days our baby girl Lilliann got to come home and make our family complete! She will get constant snuggles and attention. We will cherish every kiss, hug and cuddle for the rest of our lives! It’s been a long time coming, a rewarding and frustrating road we will never forget. We will never take this journey for granted and will truly miss all of the staff in the NICU that cared so much for Lilli and taught us newbie parents a ton! We are looking forward to the NICU reunion next month! It was very bitter sweet leaving the NICU. It’s like we’re removing a security blanket, we are going to face the toughest challenge of our lives by caring for our baby girl 24/7. There is so much to look forward to in our future and what a special time to finally privately bond with our daughter. The journey has made me a stronger woman/Mom and has made my love grow endless. We will look back one day and realize how fast it all really went by.

 

We are so glad we do not have to wash up for minutes and fight over sinks with people, people didn’t realize there were two sinks outside of the NICU. One for the north bank and one for the south bank and they would always use ours (which seemed to be out of soap often) when they were a ways down the hall… People have no respect or common sense! We reached our breaking point a time or two. Little things would get on our nerves like awkward elevator rides and lack of communication sometimes.

Things We’ll Miss
-Some Nurses
-Doctors & daily checks/updates/questions
-Fresh amazing ice & water for my hydroflask

Things we won’t miss
-driving to the hospital everyday
-checking in daily/washing up
-starving ourselves for food for longer snuggles
-hospital alarms, codes and trauma alerts

We felt like kids on Christmas, waiting allΒ morning Sunday for the neonatologists to call and say it’s time to discharge and finally take Lilliann home! It felt like waiting on parents to say it’s ok to open your presents now! We have to be cautious and not expose her to too much to fast, it’s already going to be a culture shock for her. I am so thankful to be off of work currently and blessed to be able to do so right now, I will go back to work in a few weeks, once we’re settled. She does amazing in her car seat and on car rides and had a great check up with her amazing pediatrician! She gave us major kudos on how well Lilli is doing! Lilliann is the champ though! Gaining weight wonderfully which most newborns will lose weight when they first come home, not her she loves to eat! She’s gonna be our chunky monkey! We have a bath/scale at home to keep track of her weight progress too!

9F95C128-0DF8-4B46-87A4-406B142BC475(Baby rolls and double chin!) πŸ’ͺπŸ˜πŸ’•

We are soaking up everything, every moment! There’s so much to get used to, first being the lack of sleep, she’s worth it but no matter how much you prepare for it you will never be. Parents are true super heros in my eyes! It’s been overall quiet and just hearing constant baby sounds with no monitors is an adjustment too but I love hearing all of her coos and baby babble. She’s got some serious lung power and has a great newborn cry! She even squeaks and squeals! Makes the cutest noises and Garry doesn’t get too annoyed by her cries, jokingly it reminds him of a car engine starting. She also makes a funny sound that reminds us of predator in the movie. πŸ˜‚Β She really only cries when there is good reason, for food, diaper change or snuggles! Can’t really complain! πŸ˜‰πŸ‘Œ Garry keeps asking me if we have anywhere to go daily but it’s nice saying no, We have everything we need right here! No more daily hospital trips is just as amazing as I thought it would be! We are enjoying our new life at home with our princess, even her fur siblings are liking her! Kona has been a little stand offish as expected but PJ loves her! He guards her with his life! 😻

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We will try our best to blog on her progress and updates from home. We also will be accepting visitors soon, first we just want to get fully adjusted in a semi regular routine as a new family before we bring all these lovely people into her new world. Here’s a few links to read about what we’re going through and expect from our future visitors! Please take the time to read them and as hard as it is, remember no kisses!!! βŒπŸ’‹

http://www.marchofdimes.org/complications/visitors-and-visiting-after-coming-home-from-the-nicu.aspx

http://handtohold.wpengine.netdna-cdn.com/wp-content/uploads/2012/05/Were-Coming-Home-from-the-NICU-1.pdf

Remember to “Wash your hands and say your prayers because Jesus and germs are everywhere!” Our new motto and sign for home!

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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!) πŸ’‹πŸ˜πŸ”₯ ❀️

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) πŸ’–πŸ΅πŸ’€

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!Β 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!Β πŸ˜‰πŸ’ͺ
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! πŸ–€Β We’re all officially set and ready for her homecoming! πŸ™

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

True Boss Baby

After 70 days in the NICU, what a humbling experience and week it has been! Lilliann is over 38 weeks in gestation and was unexpectedly on her way to discharge over the weekend. Lilli has not had an apnea episodes since the 29th of June and after having her NG tube removed Thursday morning. Unfortunately she had a Brady/apnea episode not related to eating a few hours away from going home…therefore our apnea watch restarted and she can’t go home for about a week now, as long as she is free of any more episodes during this week. She is the boss and showed us right in time she really wasn’t ready to go home, she must have felt rushed, like we thought. As frustrating and upsetting as it was to finally be there and after being there all night with her for it to happen last minute, I’m glad if it did have to happen it was there and not at home. NICU babies here can’t be discharged on a monitor, that got discontinued about 5 years ago one nurse told us. Thanks to parents who relied too much on the monitor itself rather than their own baby and body language and would think all of the false alarms weren’t the real deal once it really happened. We pretty much can tell when Lilli is going to have a Brady and can usually proactively prevent it.

9B47D25B-5A6E-4C30-B28D-7D1A4E463859.jpgLilliΒ passed her car seat test by sitting (mostly sleeping)Β in it with no issues for almost 2 hours! We are also all trained in infant CPR and choking now. Lilli had her 2 month vaccines last week and did just fine with them, no breathing complications one bit! She’s really close to hitting 5 lbs which is almost big enough for her amazing nesting days wrap we have for her and can’t wait to use (the company is awesome and reached out to me via Instagram regarding our situation.) Lilli is also close to fitting into her ergo 360 carrier too! It’s amazing watching her grow and see how far she has come. A few things we have to keep an eye on is Lilli had a hearing test Sunday and barely failed in her right ear but the equipment they used had been acting up. So she will get checked again in a few weeks. She also has higher blood pressure for a small preemie, a normal sized adult its normal but higher than it should be for her age and size so she is on a small dose of daily blood pressure meds with her vitamins and fortifier for the breast milk. We have to take a trip up to OHSU in Portland in 3-4 months to see a specialist about it. Her kidney scan was totally normally so they don’t think that is the issue, they are just being cautious and preventing any long term issues she could have from uncontrolled blood pressure problems. We were left in the dark and didn’t even know about them monitoring her BP until they prescribed her meds (which is expensive and has to be compounded due to the low dose), that is a little frustrating. Sometimes we aren’t informed/told about things going on with our child and have to always ask questions to get the answers. We as parents are Lilli’s voice and have to put our foot down for her when we sense something isn’t right, like her being over fed a few times (hello spit up!)

B06FA4B6-9392-4931-8EA8-7112F3BEA908.jpgπŸ’›πŸ’–(Sweet little Lill in yellow)πŸ’πŸ’›

Garry is so calm with her and was holding her when her Brady episode happened and knows just what to do to get her out of it, I’m the one who goes in freak out mode so I’m glad he’s always there to help. Garry keeps telling me whenever I feel discouraged that it’s ok, Lilli isn’t even supposed to be born yet and is still kicking butt! I told him after going home without her and crashing out for a well needed nap Sunday after the failed discharge that look at it like I was having a false labor since I still would be super pregnant. Many women go to the hospital thinking it’s baby time only to be sent home with no baby yet. That was what we experienced, I’m thinking. Lilli will
be ready on her time and we want her 100% ready and healthy for going home. She is truly the boss after all, in charge of everything!
This last week really has made us turn on turbo speed and get everything we need officially set up this week we are just fine tuning! So to our prayer army please continue to pray for our little family that we can finally go home here soon with Lilli on board! I was supposed to start my parental leave this week but because of the events that happened over the weekend I decided to keep working until she is officially discharged. As hard as it is to keep up the busy weekly schedule it will all be worth it in the end. I’m glad I’ve got at least 3 weeks in of work (toΒ help our finances) until her homecoming. I’ve got to keep myself distracted otherwise I might go crazy. 😜

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If we survive the NICU stay we can survive anything! People think they can relate and unless you’ve been in this situation you really can’t. We are still parents and get no credit sometimes. We will cherish our baby even more now thanks to working so hard and fighting to get her home! Last week we got out for a while and enjoyed the Fourth of July for the last time just being the two of us. We so badly wished Lilliann could be around all of our friends and family for the annual parade and firework show, next year we will celebrate big time! It was hard seeing all of the cute babies and pregnant women walk around since that should have been us! Oh boy do some babies look huge compared to our Lilli bug! We also had our last date night until Lilli gets discharged. Since we couldn’t celebrate Garry’s birthday a few weeks ago, months ago I got him tickets as his present for a meet and greet concert to one of his favorite rappers B.o.B! We had a blast! We’ve been wanting to see one of his shows forever and so glad he came to town and we got to meet him and hang out up close and personal before the show! It was totally worth it and he is an awesome person! It was truly our last hurrah! 🎢❀️🎀

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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!Β 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) πŸ™πŸ˜

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 withΒ 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.Β 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. MyΒ 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!Β If one thing in our life finally had to go right we’re glad it’s her! πŸ’ž

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