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!


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!



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. 😜

60556FEF-80BF-4B44-B852-E01A1C91D2C8.jpg(Happy tube free face girl cheesin’) 😍

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! 🎢❀️🎀


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?!


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!


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


Fatherly Love

Happy Fathers Day! All of my life I have been blessed and surrounded by AMAZINGΒ men! My own Dad is simply incredible! My world would be so lost without him in my life. My Daddio has accepted Garry as one of his own and has set a great example to us on how to love and raise a daughter right. By always being there and being the one to wipe away her tears but be stern when needed to establish strong roots in her to build a solid foundation she needs to grow independently on her own. A father is truly a little girls first love. All while Dads are supposed to be a girls first home, the place she feels most loved, safe & secure. It’s a rewarding job for sure! My dad always prays for us and with me when I lose my direction of faith. I’ll always be a daddys girl. He is truly one of a kind and I am so thankful God chose me to be his one and only daughter. Lilli is lucky to be his first grand child! πŸ’—


I was also blessed with amazing Grandfathers who are so strong and have been great examples on how men should treat their children and wives. I am forever thankful for having Garry in my life as my loving husband and now an amazing Father to Lilliann (and our fur babies!) he’s a natural, we are lucky ladies! I am so proud at how he has taken on this new role as a Daddy! He’s so supportive and caring for our little lady and he just impresses me every day! He is our world! ❀️🌎 Garry’s a pro at taking Lilli in and out of the incubator. I’m still a little nervous doing it alone. I am always worried about and intimidated by all of her cords and wires. So I’m glad she’s always safe and secure in his arms during transition time.


I like to call Garry Daddy long legs! He hates it. 🀣 His 1 step is like 3 steps for my little legs. Hah! I’m going to teach Lilli to give all of her long French fries to him like I did to my Dad as a little girl. I Called them daddy fries since they were “tall!” Garry is such a fun loving Daddy to Lilli! I can’t wait to hear the voices and ways he will act out her nightly story time, she already loves his silly ways! 😍
Lilliann is a spitting image of Garry, she even sleeps just like him! Like father like daughter. Maybe she will even be tall like him too, one day. It’s amazing and kind of unfair since us Moms take the time and go through pain to grow these little humans only to have them end up looking like the Dad. πŸ™„πŸ˜‰
My Mom says sometimes those who haven’t had the best parental role models in life, turn out to be some of the best parents because they know and can give to their children what they wish they had growing up. I believe it to be 100% true! So happyΒ first official Father’s Day to my handsome husband! He finally has a reason to celebrate! πŸ’ž

IMG_0297(Poem given in the Father’s Day goody bag by the NICU to all the preemie Dads) 😭

Its the 18th and Lilli is now over the magic 1800 grams!!! Almost 4 lbs! If she maintains her weight for at least 2 days she gets graduated from her isolette and into a crib!!! This little baby girl is something else! Growing so fast and making amazing progress! God knew what he was doing when he created her! Our Miracle baby! πŸ’•πŸ‘ΌπŸ’—
Lilli was a bit on the stinky side last night so we gave her a bath. She loves being clean! She is just the prettiest little baby girl without her NG tube in.

IMG_0303(Chubby baby hands! πŸ€— Just want to eat her up! 😜)

One thing that’s weird is when we check in to see Lilli everyday she’s listed under my name, Garry is not listed so he has to spell out his name every time which is getting old and they even ask for the last name which is obviously the same…we are married and share this child together he should be listed on her hospital profile! He deserves credit too, without Garry’s help she wouldn’t even be here! Oh well… just more security hoops to jump through. Wish they seriously had long term guest passes for NICU families.
While we sit and wait at the desk some days to check in behind the long lines sometimes, there is at least a really cool sculpture outside the woman’s care floor has to look at.


I seriously give single parents so much credit raising children on their own. I would be so lost without Garry by my side through everything! So major props to the Moms and Dads doing the parenting job solo! πŸ‘ Garry’s Mom raised her son right! She is not only his amazing Mother but his Father all in one. (She could kick most kids Dads butts) πŸ’ͺ the best male figure in Garry’s life was his Grandpa Garry (His moms Dad & Lilli’s Great Grandpa) Wish he was around to see her grow and celebrate his birthday on Friday during the BBQ bash. We know he is all of our guardian angel looking down and making sure everything is always alright. So thank you to the parents raising children alone to be respectful adults in this crazy world. There is always room for good humans out there! πŸ™Œ

Simply Blessed

Since Lilliann has been born we’ve been given an endless amount of love, support and prayers from some amazing angels on Earth we call friends and family (and new nurses and doctors!) We had a successful, awesome and fun day yesterday at our BBQ/Baby shower! We felt so loved and feel so blessed bringing Lilli into this amazing and generous group of people! The food and desserts were so delicious that I even dreamed about it! πŸ˜‰ It was nice to actually have an occasion to wear pants rather than sweats and put on perfume after almost 2 months!

7C485753-4AE8-4D2C-A882-418D2D9DBF8A.jpgIt was so great to socialize and share about our NICU journey so far with everyone and can’t wait to share our little baby blessing with all of them once Lilli is finally home! We may have to do an encore welcome home bash once we are all settled later this summer! πŸ’›πŸ˜Žβ˜€οΈ

Lilliann is still growing like a weed and her weight is up everyday! She is currently only 3 ounces away from graduating out of her isolette and into a crib! πŸ™ Her red blood cell count was down again this week so to help with her anemia she received some iron and a hormone booster injection called darbepoetin that will be given one time weekly to help boost those red blood cells so she won’t need any kind of future blood transfusion. I jokingly mentioned if she did ever need one just hook us up together and I’ll donate my blood directly to her since we are Both O negative! πŸ‘Œβ€οΈ
Lilli is still practicing her nuzzle nursing and I feel she is going to honestly be a pretty natural breast feeder! She shows very strong cues and seems to get the idea of what to do! By 40 weeks we should be golden! πŸ’• I love trying to nurse because it’s such an amazing bonding time between Moms and Babies. I love using that time just admiring her perfect features like her ears, nose, toes, fingers & nails and round little head! She’s just a miracle in our eyes! Last week we did try nursing during three of her feeds all while starting to wean her out of her incubator, she got no swaddler or gel pillow but it all really wiped her out and she lost a tiny bit of weight after one day of solid attempts and had to go back up on her oxygen flow. She’s doing better now that we haven’t approached it so aggressively. She’s good at telling us when enough is enough and if things are moving too fast for her! πŸ‘ It’s a day by day process and her flow can go up and down and she will let us and the doctors know when she’s really ready to be off her HFNC.

We’ve spent well over 45 days now in the NICU caring for our sweet little Lilliann and haven’t missed a day in her short life. Let me tell you we are slowly getting burnt out on this hospital life. Writing this blog gives you some insight on the NICU life but you can’t get the full experience until you have seen it all in person. We want some friends and family to visit to see what our lives are currently like on a daily basis now. It can be frustrating and exhausting at times. It’s hard parenting when you have a different nurse almost every day and get told different things all the time. You have to use your best judgement and speak up if there’s something you don’t agree with or are confused about. We can’t wait to get her home and just RELAX as much as we can. Doing simple things like just laying on the couch with her and watching tv or a movie will be Heaven on Earth! We did get to have a little excitement in all of our lives recently in her NICU room…as new parents we gave her an official first bath! Oh my goodness did Lilli do amazing! She’s a water baby all the way! She showed us how strong she really is by pulling herself up on her daddy’s fingers and rolling all around the scale when we were done. πŸ’ͺπŸŽ€ It was so much fun to get her all clean and interact with her. Bath time will be a favorite for all of us! Garry and I both loved baths as kids, playing with our toys and singing are great memories in our minds and can’t wait to share that experience/bonding time with Lilliann. Plus clean babies are the best smell in the world!

IMG_0170.JPG(So fresh and so clean!) πŸ€—πŸ›

We are currently on the hunt for an amazing Pediatrician to care for our little Lilli once she is home. So we had an interview with two this last week and have another this coming week! As new parents we have to make decisions on who will be the best fit for our little family! We really liked one we saw so far. These are doctors you will have a long term relationship (sometimes frequent) so in a way you have to choose who is the right fit for your lives. Lilli will need someone very caring and knowledgeable for her medical care. Preemies grow and mature differently from one another and definitely from full term babies. They don’t really fully catch up until age two so we don’t want any doctor who isn’t educated in prematurity who could discourage us at all in her growth progress. We’ve got to make the best decision soon especially if she goes home next month! πŸ’—

IMG_0213(Who wouldn’t want to care for this sweet lil lady?!) 😍

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.

(Our Earth angel Lilliann, already cheering up the place) πŸ’•πŸ‘ΌπŸŽ€

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!

(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. πŸ‘Œ 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.


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. πŸ˜‰

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

Here’s a touching article a nurse shared with us…

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. πŸ™ 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!

(Calmed her down from being fussy)

Facing Our New Reality


6C10727D-2E10-42FA-8CDF-259295911A7E.jpg(Big girl and her pacifier!) πŸ’œ

Our baby girl Lilliann has officially hit 1000 grams! 1025 grams to be a exact as of yesterday and up another half ounce as of today! She’s just staying steady and doesn’t need any changes according to the doctor just needs to keep growing big and strong! She’s making such great progress and everything seems to be moving pretty quickly, therefore we’re trying to get everything we need to take her home.
No one in our family had or was a preemie so it’s a new experience for everyone and we have no idea what exactly we need since we aren’t sure what her size will officially be when she goes home.
Slowly but surely were getting the things we need for her. So far we have some preemie outfits, newborn outfits, changing table dresser combo, changing pad with covers, bouncer, car seat, boppy pillow, baby wearing wrap, diaper bag. We still need to get our registry done for the upcoming baby shower! We’re just slacking a tiny bit. We have some other items people are getting for us like an ergo carrier, bassinet, wipe warmer, stroller and swing. We still need video monitors, car seat/nursing cover, baby bath tub and would love to have an owlet sock monitor that tracks the babies heart rate and oxygen levels while she sleeps, with her apnea it would put this Momma’s paranoid mind to rest. We will need a crib and bumbo seat for when she is older. We of course need bottles, diapers, wipes and hygiene equipment. Once again though especially with the bottles we have no idea what she will be taking or liking when she gets released. My Mom did order us an awesome preemie book the NICU recommended, plus we have wonderful references to ask questions to daily aka nurses who care for Lilli. We will get everything we need eventually, I am sure! She is rather spoiled remember being the first baby in the immediate family that’s been born in almost 2 decades.

We also found out we may not qualify for her social security benefits (due to her low birth weight). We are just on the edge of making too much monthly income for that. We have an appointment soon to discuss our case. They really need to take into consideration that I haven’t been working for a month, granted I do get short term disability currently through my employer. But that’s providing less than half my normal income and it’s only temporary. We have bills and our mouths to feed. We don’t pocket all of our earnings and aren’t on any other state assisted program. I pay for our insurance, I don’t have the luxury of knowing her bills will be paid for by the state like many others do. I pay my taxes so it would be nice to get a little extra help when needed since we weren’t preparing for this unexpected early birth. Lilliann will also have many more appointments her first year of life more so than full term babies do. Plus the NICU and hospital bills haven’t started rolling in yet. I’m not trying to whine but this is just our new reality. Sorry for such a depressing post.
We live in a not so great area of town that we desperately need to get out of, hopefully before Lilli is home. We literally saw a group of people ready to fight with baseball bats as we pulled into our apartment complex yesterday! We have lived here for over 6 years and have never seen so much hate and crime until recently, it’s getting worse by the day! I can’t expose our innocent child to this violence! Ugh! I mentioned in a previous post we got pre-approved for buying a home (literally the day I was first diagnosed with beginning stages of preeclampsia) but the buying process is so daunting and I really don’t need any added stress or expenses right now. We’re praying for an answer to our prayers! Maybe our situation is a blessing in disguise, I know God has our backs and will provide since he is in our hearts. Not losing faith in any way, shape or form. We have often been dealt a bad hand in life and make it through each obstacle just fine! We try to never ask for help or anything, but with me being off work on medical leave and Garry in between jobs (in a way I’m thankful he’s not working to be with me through everything right now) but we could be facing/running into financial hardship eventually. So our friends and family help when they can and had mentioned starting a fundraiser for us. We usually think fundraisers are over-rated especially since everyone seems to have a fundraiser going for one thing or another. They really should be for real needs and not ridiculous things like wanting a new car, boob job or whatever craziness or scam we’ve seen them for before. Trust me if I could work right now I would be. We’re pretty independent people. Asking for hand outs isn’t our thing, I like working hard for the things we need. I get more satisfaction from seeing things come to light by accomplishing it on my own. I have been working since I was basically 17 years old. I deserve time off to be with my daughter. I am not stressing over any finances right now because my main focus is on getting Lilli home. We have an awesome family/friend support system and Lilliann is overall healthy! We really don’t have a lot to complain about. We are truly blessed!

IMG_9138.JPGWhenever I feel stressed or defeated I just look at our daughters tiny body and beautiful face and remember how amazing life really is! πŸ™πŸ’•πŸ‘ΌπŸŽ€