Look at me, I’m in month 3!! Can you believe it?! I love being home with my mom, dad & brother. Before mom & dad brought me home, dad said no baby in the bed. Guess where I sleep? In bed with my mom & dad. I was so used to being held in the NICU that I want my people to hold me all the time still. I love mommy’s milk, but still only get it 3 times a day. I’m getting chubby. I weigh 7 pounds 7 ounces. That’s almost 5 pounds heavier than when I was born! I have blue eyes & red hair. You can tell I have red hair because sometimes I like to throw tantrums & have a little bit of a temper. I’m still cute tho. #29weekpreemie#3monthsold#cleftcutie#cleftstrong#fearfullyandwonderfullymade
Amelia is concerned her and her brother and sister are on the naughty list with how many times I threaten to call or text Santa daily. It’s become that time of year where my kids think they’re entitled to gifts and I swiftly remind them that presents and Christmas are a privilege. I don’t think this coffee is strong enough.
Do we tell people? Keep it a secret? I don’t have the answers. We are ready to be open about it, we don’t want to feel like we are hiding our sweet baby’s ultrasound pictures or growth development.
Little over a month ago we went for my anatomy scan.. Which I thought was just another routine ultrasound and apt. Boy, was I wrong. This was far from a normal visit.
I knew something was wrong. I will never forget it, the words “your baby will need surgery, he has a cleft lip and palate”. I blacked out, went numb, couldn’t tell you what else she said. I felt my heart break into pieces. I looked at Mitchell and just lost it, how could this happen to our sweet boy? What did I do wrong, did I cause this? It took us a year of fertility treatments to get pregnant and now this? Is he going to be okay? How can we put our little baby through surgeries? How is this going to affect his life? Will people look at him differently? Will he be able to eat okay? Will he need a feeding tube? All of these things running through my mind constantly.
I cried for days. We were sad, angry, confused, scared, worried. It feels like everything “normal” about my pregnancy and delivery just went out the window. Life will be a little harder for our little man (and us), it completely shatters our hearts. He will have to have multiple surgeries in his first year of life, and more later down the road.
When you think of cleft lip or palate you think it’s just cosmetic surgery right? No, we were mistaken. This birth defect comes with many complications and risks which took us by surprise.
Talking with our surgeon - trying to plan treatments & surgeries but also wrap our minds around what’s going to happen.
Liam is 1 out of 700. He has a complete bilateral cleft lip and palate. We are overjoyed that all other tests came back negative for any additional defects or conditions. We know that he will be a fighter, he’s already a fighter. He’s truly our little miracle. It’s going to be a long, hard journey but we WILL get through this one surgery at a time! 💙
I’ve got the most incredible husband by my side. We have the best support system we could ask for.
Theo is all smiles as we head to our first day of the craniofacial clinic! Today we meet with photography, pediatrics, audiology, and genetics. Theo has always had Superman on his side since way back in his first hospitalization, so we felt it was fitting to bring him along today too! 💙❤️💙❤️
Vanmorgen om 5.00 uur de wekker. Om kwart voor 8 worden we in het Wilhelmina kinderziekenhuis verwacht. Vandaag gaat Lennon door de CT-scan. Omdat je hier helemaal stil in moet liggen gaat Lennon volledig onder narcose. Dit is stiekem toch wel weer een beetje spannend. 3 jaar geleden ging Lennon ook een keer door de CT en moest toen ook onder narcose. Maar dat eindigde in een 48 uur op de IC verhaal...gelukkig gaat het vandaag helemaal goed. Lennon kwam wel een beetje snel bij waardoor hij erg verdrietig was. Maar na het eten van 2 ijsjes is hij weer helemaal het heertje en na een klein uurtje mogen we alweer naar huis.
Today we got the all clear for Harlows post op checks!
Her sternum has healed nicely, her heart is, as David the Echo man says, "beautiful".
So finally we can start tummy time again and on the next hot day, take this kid in the pool! 🙌🏼 Poor Harlow has had 3 out of 7 months of her life restricted to her back and sides. So as far as tummy time and neck strength goes, she's pretty behind. We got lots of work to do baby! #wegotthis
Perfect shirt and Harlow demonstrating why it is.
Looking for a miracle cure for reflux??? She's already on meds and I'm doing all I can but it seems like she's got silent reflux during the night as she's waking up screaming as if she's in pain. 😓
Send this tired mumma all your prayers, coffee and a good Cab Sav 💗
Short update on our sweet girl. Amelia’s doctor and surgeon said if she isn’t taking all her feeds orally by mid-late next month we need to look at placing a g tube (a tube that goes directly into her stomach, it’s a 30-60 minute procedure under general anesthesia). Her current feeding tube can effect the healing of her lip and she cannot have it at all after her palate repair. This is the best solution especially if she needs feeding help long term. So for the next month we will just keep eating and growing.
Ok, I need to vent. I was recently remembered by a former patients family. They had forgotten my name, but said to a fellow nurse. Is that nurse still here... you know the one with the lip? (pointing to her lip). That nurse told me that story, then I walked in on her telling the story to others. Hello? Could I be remembered by my hair color, my height, my heart? Why does this irritate me? I’ll tell you why. I am 52 years old, and in that instant, I was immediately propelled back in time, to grade school, when I got picked on for looking different. I grew up in a time when there was no internet or cleft lip support group hashtags. No operation smile. I decided to post this to all those hashtags so the right people read it. If you are a parent of a cleft baby, or you are a cleft person, don’t let yourself be defined by your scars. Teach others. I am careful what pictures I post. I seldom show any scars or crooked noses. But, I don’t care anymore. I am more than a scar on my lip.... but I should be proud of that scar . It is part of my story.
💙 (Story): “Hello everyone! My name is Ethan Alcantara and I am 3 years old. I was born on October 6th 2015 with a bilateral cleft lip and palate. Feeding was the biggest challege for me because I could not latch on for breastfeeding but with the help of Dr. Browns bottle it helped me drink milk anytime I wanted. I've had two surgeries so far. My first surgery when I was 2 months old to close the lip and the second at 9 months old to close my gums and palate. My next surgery won’t be until I am at least 7 years old. It hasn't been an easy journey but I am strong, I am happy and I am loved. My mommy says I have a beautiful smile and no matter what she will always be by my side every step of the way. We are a #CleftProud Family.” 💙 Go to www.CleftProud.com to check out @CleftProud Wristbands, Shirts and so much more in time for the holidays!
Yesterday this little Champion had an ENTIRE feed via a bottle. A whole feed! 🙌🏼
To put this in perspective, her last full bottle feed was 4 months ago. When she was 3 months old.
The feed may have taken longer than I'd like, but she got there in the end and I am so proud of her!
Here's to progress and eventually getting rid of this NG tube! 👏🏼👏🏼 I'm loving seeing all these little steps forward with Harlow since her surgery. 💖
Who's that beautiful newborn??
Why its Micah almost 2 years ago!! How did that happen.
We love his newborn photos so much because his cleft smile was captured so beautifully.
We are so very fortunate to live in a country that has such a good medical system. Any of his cleft related appointments and treatment is covered by Medicare. Even our travel to Brisbane is covered.
Children in 3rd world countries are not so lucky but Operation Smile steps up to help these children with clefts and other craniofacial abnormalities lead a normal life.
A child’s cleft lip or cleft palate can be repaired for as little as $240 and in as few as 45 mins.
This is why for the second year we have set up a fundraiser to help support Operation Smile on their mission. Any donations wpuld be so greatly appreciated! Link can be found in bio♡♡
Five days til I return home, my other home. Gonna miss this super cutie, one of the biggest reasons for my visit (and his brother too!) Second surgery next month for my nephew our Super Xavier Sebastian aka Xavi. We are #cleftstrong#cleftproud#cleftcutie uber super duper handsome, charming and sweet cutie. Watch out world, this baby is the bomb! ❤️
Hands up if your birthday is in December 🙋
Being born close to Christmas could be a blessing in disguise 🎅 Instead of asking for two lots of presents, you could ask for a donation to @smiletrain and raise money for an amazing cause 😊
Find out more in our #LinkInBio
So many puddles to splash in with all this glorious rain!
Crazy how last week we were surrounded by bush fires and in a huge heatwave now its kinda chilly and so much rain there is alot of flooding and our road to town is over.
Yesterday I posted a video and mentioned how I DIDNT like wearing lipstick. I started wearing it about a year and a half ago. Before, I was a terrible mess: analyzing my lip, scar, how color attracts the eye to the lips (I'm an artist so I looked at everything), being looked at in general. Well I did some soul searching and realized that I'm just as different as "normal" ladies and I should embrace my smile. And I have. Now I own 4 different shades of lipstick. More than I've ever had in my 27 years of life. We're all growing all the time. Love yourself. #cleft#1in700#cleftstrong#cleftlove#cleftpalate#cleftproud#cleftconfidence#cleftcutie#cleftcommunity#lipstick . ❄️💛EDIT: if any of you ladies or gents want to be featured with a little story, DM us!! I know other clefts would like to see yalls perspective on things.
One day late is basically early for a third kid! Jasper mostly enjoys sleep and being held while sleeping. She also enjoys these rare few minutes a day when her face is not all taped up with contraptions in her mouth. Her biggest sis is pretty excited about the strawberry blonde hair coming in, and is also certain those dark grey eyes are turning blue. This teeny girl is already tough as can be and handling her weekly Vancouver trips like a champ! #jasperjoneskennedy#onemonthold#cleftcutie#girlpower
My baby girl is feeling good and smiling extra today. Recovery has been slower and more painful than we thought it would be, but she’s such a little trooper. She’s handling it very well, and I’m so proud of her.
We’ve got a follow up visit in three weeks. Hopefully all of the swelling and bruising will be healed then.