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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Movin’ On Up In The World

Silly Lilli is always so animated and expressive! We just love that little lady sooooo much! She is seriously the light of our lives! She is great at funny face pictures already…

IMG_0525hmmm wonder where Lilli got it from?Β πŸ€”πŸ˜‚πŸ˜‰πŸ˜œ

Lilliann is still doing awesome without herΒ morning caffeine and breathing well on her own without the help of any oxygen! Lilli is also gaining weight well and keeps getting increases with her feeding volume, and tolerating it well. She does spit up from time to time but she is a baby after all and it really isn’t affecting her weight one bit! We are so blessed that she hasn’t had any serious complications from being so small and premature! This has been quite the adventure for all of us but she is our hero and our SUPERGIRL! Nothing can stop her! She is destined for big things in her life we just know it!

1498324040009(Our SUPER baby girl!) πŸ’žπŸ’ͺπŸŽ€

I am feeling rather super human myself lately by my new daily routine! Just as everyone is done with school for the summer I’m going back to work. You get some kind of crazy motherly strength to do the things you need to, to make an easier & better life for your children.Β I wake up early to pump and get ready for work. I go to the hospital to visit Lilli and nurse her for 30-45 minutes at her 9am feed then make it to work by 10:30 where I stay all day and pump every break I get. I get off work by 7pm go home and have dinner then go back to the hospital for her 9pm feed where we nurse again! Then home to finally get some sleep, if I can and repeat it all the next day for the whole week. My patience has been tested time and time again but I’m making it through just fine which is making me such a stronger person/Momma for our baby girl. I’ll get the hang of this routine and just as I get it down she will get released I’m sure! 😳 Then I’ll have more time off with her then. I am glad she has one of us parents to look after her while I go back to work for now.Β I am still using a nipple shield when I nurse her which is going well so far. She has gotten most of her feed volume through it. I’ve mentioned it before but can’t thank God enough that we live so close to the hospital/NICU, yes it still takes a lot of time to finally get up to her room but other families aren’t so lucky by living out of town or have multiple kids to care for. I couldn’t imagine not being able to see her every day! I miss Lilliann horribly most nights and honestly look forward to our middle of the night feeds when she is finally home! Right now we feel like we are just renting a baby and can’t wait to take on parenting full force! The nurses are amazing and honestly the best baby sitters while we prep for Lilli’s homecoming. We are trying to get all we can out of the way before that happens. No more lake or river days or fun for a while. Premature babies really should avoid the public for a while at first once they are home, that’s where they should stay for the most part except for doctor appointments. We want to protect her as much as possible and don’t want any germ to harm her once she is home! She is just to innocent and precious! She’s our miracle and can’t let anything knock her down! πŸ™…

IMG_0402(Prettiest little face on the planet!) 😍🌎

My 6 week post partum visit went well with my doctor I’m healing amazing and am right where I should be. My blood pressure readings have been doing just fine without blood pressure meds they are around 98/60 now where when I was in my worst stage of preeclampsia they were around 180/108+ I was close to stroking out. It’s so weird having my post partum visit already when I really would have a few more weeks before her arrival. Fastest pregnancy ever!!! I do from time to time get a little jealous/envious of other girls healthy pregnancies since mine was cut so short but then I remind myself we all come into this world the same way just in different situations. We’ve just got to know Lilli and love on her sooner than most.

When I am home watching TV I’ve noticed a commercial on tv that really gets on my nerves. It’s the commercial about smoking during pregnancy and babies in isolettes here’s the link to it…

There is almost a stigma on preemies and it’s annoying because I have NEVER tried a cigarette my whole life and there’s nothing I could have done to cause her premature birth or really prevent it from happening.
Every preemie is born because of different issues so I’m hoping to educate people on those issues so there isn’t as much judgement. Like when I tell people I have a daughter in the NICU when they ask where my daily visitor pass on my shirt is from, either they don’t know what a NICU is πŸ™„ or they look at me like I did something wrong but there are a few who are sympathetic and give their well wishes. This world is a funny place full of interesting people I tell you! πŸ˜‚Β & I am lucky enough to work with the public dispensing their medications! πŸ˜‰ My goodness have I learned a lot medically while spending time over the last 2 months in the hospital, that may even help me with my job.

E262726E-24F2-4E16-B2A7-750C6587A363(I am going to miss this snuggle bug all day! πŸ’•)

Cruising On Autopilot

Lilliann’s gestational age is officially 34 weeks now, which it’s crazy to think they wanted her to try and stay in the womb for that long! I’m glad we have got to get to know our warrior princess for over the last month instead of me being miserable stuck in a hospital bed. πŸ˜‰
Things this week have been going very smoothly for little Lilli! Just keeping her on autopilot as one doctor says. She is growing well with no major setbacks. She was borderline anemic as of last week but is doing better this week without the help of a hormone booster. She’s well over 3 pounds now. Over 3lbs 7 ounces and keeps getting her feeds increased! She’s getting 30mls at each feed now and has outgrown her nutrients and is only getting a breast milk enhancer and will be weaned off of her one and only medication which is caffeine. (Aka her morning coffee), soon! Hoping her breathing and apnea continue to improve. Her oxygen flow is also decreased down to 2 which is a big change since she was at 4 earlier this week, doctors are talking about stopping it all together and see how she does next week! She would love it! The less tubes/wires the better! Ever since her Cpap came off again last week she makes the funniest and cutest facial expressions.

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IMG_9827(So much personality already!)😜

Lilli has officially fit into preemie diapers for a while now! No more micro or macro diapers for this little lady! Garry and I have been able to successfully (without any fuss or nurses help) take her out of her isolette and put her back after each hold and manage well around the sometimes twisted cords! Each day is a step closer to going home! One nurse said last week she has about 3 more weeks left in the NICU! Which is very optimistic and makes me kind of nervous but part of me thinks it will be closer to 4+ more weeks! She needs to safely fit in her car seat! Since things are moving quickly we have a few pediatrician interviews lined up in the next couple of weeks to find the right choice for our little family! Fingers crossed we fall in love with one of the 4 doctors we have lined up! 🀞

Next week will be very busy for us with baby shower prep and tons of appointments! We will manage just fine! It’s going to be chaotic at times but totally worth it in the end since we can relax and have a fun baby shower/BBQ party with our favorite people celebrating Lilliann’s birth!

Two major things that are big in my eyes is #1 -Lilli finally gets to start wearing clothes! She has been clothed for the first time this week and oh boy is pink her color! πŸŽ€ We have some preemie outfits we got her/were gifted but have been advised to not bring anything we love since they could get lost in the wash in the NICU. We can’t wait to officially dress her up! But she may enjoy being a naked baby after all this time with just a diaper on! (If she’s anything like her Mother that will be the truth) πŸ˜‚ From the looks of her growing so nicely she won’t need preemie sizes for much longer!

D32F27B0-9EF6-4376-8BE5-6E1288FD41F3πŸ’•Β (Pretty In Pink!) πŸ’•

The Second big thing is that we have officially started practicing breast feeding! We call it nuzzle nursing for now while she gets the hang of it! I think she will pick it up officially in no time, especially now since I’ll be going in for at least 3 of her feeds to try it and see if she is getting any milk via mouth after they weigh her before and after. It’s amazing seeing such a small baby know what she’s doing already! She impresses me everyday! We are such proud parents, Lilli is truly our HERo! πŸ˜‰πŸ‘Œ Watch out Wonder Woman, you’ve got nothing on little Miss Lil! πŸ’ͺ

25B5A7D8-0D50-41FB-9986-2D8BD07E3575(Lilli still LOVES her kangaroo time!)πŸ’

Her little smile lights up our world/lives! Lilli smiles with her eyes, just like her Mama! I think she has my eyes, and hopefully inherited my long natural eye lashes! They definitely look to be growing that way and are very curly, which makes me semi jealous since mine are so straight!
Some nurses say she looks like me but I don’t see it. I see a miniature Garry when I look at her big time! She is all his and there’s no doubt about that! 😘❀️
Lilliann’s hair color is ever changing! It started out very blonde and turned strawberry. We could have a spit fire red head on our hands since it does run in our families! But now it’s getting much darker! We shall see what it turns out to be especially by week 40.

Lilli’s new friend finally was delivered and she seems to like it! We still need to give it a name! Any suggestions?!

7AE399B7-A3A8-47BD-A439-10F7421AEA95(Nameless knitted octopus friend!) πŸ’œ

My follow up appointment went well last week! I’ve been off of my blood pressure medication for officially a week now! Seems to be normal and going just fine! My weight is staying stable at 114 pounds and I like it! I was worried I would lose a ton since I pump so much but I eat a lot to compensate! I really don’t ever want to be as small as I was when we got married last year. Barely hitting 100lbs is not a good look for me and isn’t very healthy either! Healing from a C-section isn’t that bad! It was honestly very easy and not as painful as people make it out to be, maybe it’s just my high pain tolerance but I would totally do it again if I had to.
I am unfortunately running out of short term disability pay in the next few weeks. I will only have up to 12 more additional unpaid weeks of parental leave after the end of June. So basically no paid time off with Lilli when she’s officially home. Which really sucks because my short term disability runs out before her release, when most Moms have that paid time off to be with their babies at home recovering that first few weeks of life with them to bond especially. The USA is so behind in parental leave laws, it isn’t even fair, especially for a well developed/established country!Β I want to be able to spend everyday & all day with her! She’s just so dang precious! πŸ’•

IMG_9824(Smiley girl and her OG baby hat – photo cred goes to her Daddy!) πŸ’—πŸ“Έ

One Month Down

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We’ve officially hit 1 month since Lilliann graced the world with her sweet & tiny yet mighty presence! I seriously can’t believe it’s been a whole month already, but every new mom says that right?! πŸ’— Lilli keeps gaining weight and baby chunkers, thanks to tolerating her food volume increases and added calories and nutrients. She weighs VERY close to 3 pounds now!!! She now has a baby double chin and chub on her arms and legs and is plumping up with fat on all four cheeks, on her booty and her face! πŸ˜‰πŸ€— She also had an eye exam yesterday and her eyes are fine just immature which is expected. She will have another exam in 2 weeks to make sure there are no issues with the retinas as can happen with extended time on oxygen.Β Lilli only has two main goals now. #1 Continue growing & #2 Fully wean respiratory support! Once she’s hit 1800 grams and is off respiratory support she graduates into a crib! πŸ™πŸ’•

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(Baby double chin!) 😜

Her little body was still getting a much needed break to grow by still being on the bubble Cpap machine, flow of 4 with room oxygen (20-21%). They slowly weaned her off of it to give just the nasal oxygen a chance again. She hates the Cpap especially when they switch her from the mask to the prongs (can you really blame her, she wants us to see her pretty face and have freedom again.) She’s usually a great calm baby and tolerates everything well but she definitely can be a little rambunctious at times. Lilli has really been enjoying her snuggles a lot lately, improvement from earlier in the week when getting held she would use her Dads armpit as leverage to get her Cpap off. (Our hands will be very full with her.) Officially one month old and off her Cpap again as of this morning!!! Nurses said she instantly smiled when it was removed! (She helped take it off apparently!) πŸ’ͺ🀣

IMG_9543HAPPY baby!!! πŸ˜˜πŸ’•πŸ˜

She is very strong and throws her pacifier when she’s done using it and pulls out her wires, tubes and Cpap at least a few times a day so we have ordered one of these little guys to help her and the nurses during her long term stay in the NICU…

 

Whenever I see butterflies I am instantly reminded of our little Lilli bug. Not just because of the nickname Lillar Lillar Caterpillar but because she is blooming into the biggest and brightest butterfly on Earth! A giant yellow one flew across my car on my way to see her the other day and it instantly brought a giant smile to my face. You can’t deny Gods beautiful creations! πŸ™πŸ›πŸ¦‹

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Lilliann is still receiving my breast milk and loves little drops in her mouth, they make her very happy! One thing I never realized is how amazing babies breath smells! (Not the flowers) Pretty sure it’s better than puppy breath! 😍 In order to provide Lilli with the amount of food and nutrients she is requiring to grow big and strong I am having to pump my milk every 2-3 hours and at least 8-12 times daily, talk about a new full time job! She’s worth it all though even when I feel like a cow… πŸ„πŸΌ It’s exhausting balancing/managing my time and it only makes me extra tired, hungry and thirsty! It’s amazing to watch Lilli grow on the outside vs the mystery that would be going on right now internally if I were still pregnant. She has changed so much already since she was born! We are so curious how much she will weigh and how much hair she will end up having and what her hair and eye color will end up being once she gets released. Typical things parents can’t wait to see once their full term baby is actually born.

One frustrating thing we can’t get over while navigating and spending so much time in the hospital is why we still have to check in daily to get our pass to see our daughter. I am very glad the mother & baby unit is so secure that is very reassuring but it is also a total inconvenience when you are on a time crunch some days and just want to see your child and or don’t want to miss your window/chance to hold them. It’s too bad there isn’t a long term guest pass and could just have your nurse call and check you in with security once you’re in. The only access pass we have is to get into her NICU bay. It’s so annoying when you get stuck behind a line of people who are unsure of where they need to go and it takes forever to actually get into the NICU, you have to be let in by security and wash your hands for 3 minutes remember, after already waiting in a line for up to 10-15 minutes sometimes. I was late for an appointment last week because some guy wanted to argue forever with security about why he couldn’t get let in because the family wasn’t back into their hospital room yet, when all I needed to do was say hello to Lilli and drop off more milk. Seriously people are so insensitive and inconsiderate. I can’t tell you how many times we’ve been cut off to get entered or into the elevator by people who think they are some how entitled. I really wish it would be allowed to trip some people or yell at them about how much they would enjoy being in our shoes but I don’t. I take a deep breath and know in a few months we will be done with the daily visits and will have our daughter home safely and secure in our arms because frankly we don’t ever want to put her down when we hold her (I held her for almost 4 hours non stop the other day, it was amazing!) We still don’t have the luxury to pick up our daughter as we please. We would also enjoy private bonding time that we can’t really get in the hospital. So if you have your child home in your care, love on them as much as you can and don’t take it for granted or get frustrated when you can’t accomplish anything because they need to be held constantly. Enjoy that time because it really won’t last forever and we are still fighting for that opportunity.

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πŸ˜‚β€οΈπŸ€£

On another frustrating note, people keep wanting to bring up OUR medical bills. If we’re not stressed or worried about it right now neither should anyone else. We know in the back of our minds bills are going to probably be insane but our stress and worries are with our daughter and that’s where our priorities will continue to be for the rest of her life. (Medical costs are going to be my “student loan” payments I was proud to never have.) Lilli is worth every penny though! No we are not going to be filing bankruptcy like the countless number of people have told us to do. There are other options before that would ever even cross our minds. These amazing nurses and doctors deserve to get paid for what they do and have done to keep our baby girl alive, happy and healthy. Another reason bankruptcy isn’t in our best interest is the fact we have good credit and don’t want to ruin our chances of ever owning a home. We don’t want to be stuck wasting money on outrageous rent costs when we could be investing it. So please keep your opinions and concerns to yourself. We have had GoFundMe account set up in our name (link below) and we plan on doing many fundraisers in our future so if you are concerned with our finances please think about donating a buck before you open your mouth to our already stressful situation. I promise we are not trying to be greedy or rude about it but the amount of money I see people waste on a daily basis is sickening. Save the 5 dollars you would use to buy your daily coffee, lottery ticket or pack of cigarettes and put it towards something that would benefit and help someone else out in the long run.

gofundme.com/lil-nicu-warrior

We currently have 4 cars all of which are operable but 2 aren’t driven much as they are our back up vehicles. I’m thinking about trading in 2 or 3 of those cars to get myself a 4 door vehicle because taking a baby in and out of a two door, four seater hatchback isn’t an easy task! Time to start doing some research and upgrade! If I have to rock the sports car for a little bit I will but I definitely want something bigger, safe and secure to protect our baby girl. I don’t have the best luck on the road and encounter some of the worst drivers when I’m out driving. In 2014 I was in 2 wrecks within 10 months of each other and neither accident was my fault whatsoever. It’s so annoying being thrown into a mess you didn’t cause all because someone isn’t keeping their eyes on the road like they should be! 😑😀 If people thought my defensive driving was crazy before… They haven’t seen me with my baby in the car. Don’t mess with this Mama bear or you will probably wish you never left your house for the day. πŸ˜¬πŸ‘Š

PAY ATTENTION PEOPLE! Lives matter more than your phone call/text message or time crunch! The world would be so much better if people were more respectful and unselfish for once. ✌️

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€