Eleven Month Update

We are only one month shy of Joey's first birthday!  Not to mention this month had flown by.  This update is going up a little later than usual, but don't worry, it will be chalk full of Joey fun facts and photos!

Health and Medical Update

Still no doctor appointments until next month, but I think I jinxed myself last month because Joey did experience his first cold and/or virus.  It started pretty bad, he even had a low grade fever for a day or two.  Combined with really bad constipation and teething, he was pretty miserable.  He still remains congested at times, with a runny nose, but after about two weeks of not quite being himself, he seems to be feeling better.  He finally has his appetite back and is a happy baby again.  But he still HATES to have his nose wiped!

Firsts and Milestones

I think I've said the same thing in the last two month's updates, but Joey is *this close* to walking.  But he just hasn't felt the urge to let go of our fingers yet, which is fine by me.  He crawls so fast that I can't imagine chasing him around once he is walking.  He sometimes can stand on his own, although most of the time he doesn't realize that he is doing it.  He can walk with only a light touch on the coffee table or couch and will coax you to walk with him by grabbing your fingers and leading you through the entire house.  Maybe by his first birthday he will be taking steps on his own, but whenever he chooses to do so, he will be pretty proficient at getting around right away.

I am still waiting for the first "mama", but Joey loves to babble all the time now.  Everything is "dada" or "baba", he likes to practice his "f" sounds whenever you mention a word that start with that sound, and he talks to himself in his crib every morning when he wakes up.

Joey now loves to clap and wave and is just getting the hang of the baby sign for "more".  He is also so smart that he figured out how to turn his light switch on and off from his crib.

Grandma and Papa took Joey to his first Gymboree class this month.  He loved to play with the bubbles and under the parachute.  

Likes and Dislikes

Joey still loves to play peek-a-boo and hide and seek, except now he doesn't need anybody to play with him.  He will sit in his pack-n-play with one of his swaddle blankets and cover his head and then throw it off over and over again and he just makes himself laugh while doing it.  

His favorite toys are mom's keys, the remote control, his stack of rings, the tube to mom's breast pump, board books, and his Albert Einstein. Einstein goes in his car seat and stroller with him and he likes to play with his crazy hair.  Whoever gifted that in the White Elephant gift exchange this past Christmas, Joey thanks you! 

Minus the couple weeks when Joey was sick and became a pretty picky eater without much of an appetite, he continues to love eating whatever we are eating.  The only things we are continuing to avoid for a little while longer are honey, shellfish, and nuts.  He is getting much better at feeding himself and is even picking up some finger foods with just his thumb and index finger.  The more his dexterity improves, the less food the dog is getting because most of it actually makes it into Joey's mouth now.  

My milk supply is slowly diminishing, but Joey continues to nurse at least once a day and I continue to pump, however his bottles are mostly made up of formula.  My goal was to nurse/pump for one year, so I will continue on that journey for a few more weeks and see where that takes us!  But Joey doesn't seems to mind the formula at all.  He also loves drinking water and juice from his sippy cup.

Family Update

This month I went on my first work trip since Joey was born.  Luckily, it was only Vegas and only for about four days.  We had our annual Baskin-Robbins meeting.  I got to gamble for the first time in a couple years also!  (Last year I was very pregnant for this annual trip, so I tried to not spend any extra time in the smoky casino.) Grandma and Papa watched Joey whenever Jamie was at work and Jamie had his first few full nights by himself with Joey. All in all it was very successful.  I don't think Joey even realized I was gone, and I definitely missed him more than he missed me!

Grandpa Don had another successful knee surgery, and Joey can't wait 'til he can chase him around.  Joey also had a fun lunch at Grandpa's with his Great Aunts and Uncle.  He also can't wait to see his new baby second cousin, Cece.  Hopefully they will get to meet at Easter!

Again, thanks for checking back in this month, sorry the update was late! See you in a couple weeks for Joey's One Year Update!! Yikes.

Hold Tight

Hello everyone!

Thanks if you remembered to come check on Joey's blog today!  I need a few extra days to get the post together.  Check back on Saturday or Sunday for Joey's 11 month update.

In the meantime, scroll down and check out the post I did a few days ago that includes a photo series and CHD Awareness Week tidbits!


xo, Amanda

Congenital Heart Awareness Week- February 7-14, 2017

Here is a recap of my CHD Awareness Week photo series and posts that I made to Instagram and Facebook, just in case you are not following me there!

Day 1

Today marks the start of CHD Awareness Week, and honestly, a week I never knew existed before last year. 1 in 100 babies are born with a congenital heart defect. 1 in 400 are born with critical heart defects that will require surgery. And 1 in 3300 are born with Transposition of the Great Arteries, only 1250 babies each year. Although Joey fits into these statistics, he is 1 in a million to us. As this awareness week continues, please join me in spreading the knowledge, support and love you have for this cause. ❤

This photo is one of the very first we have of Joey. He is in his transport carrier, about to be taken by ambulance from Huntington Hospital to Children's Hospital Los Angeles. We are forever grateful for all of the doctors, nurses and surgeons that Joey met along his journey, and you can see her from this very picture that it takes a lot of support. If you look very closely, you can see Joey slightly opening his eyes to look for us, and I will always remember that moment.

Day 2

Congenital heart defects are the #1 birth defect. There are 40,000 babies born with CHDs every year, some go undetected for years. There is no cure for CHD and over 3 million people are living with them in the US. Unfortunately, less than 10% of adults are receiving the recommended care and lots of infant's defects go undetected because prenatal and postnatal tests are not always part of routine checkups.

After Joey was born I only got to hold him for a few seconds before he was taken to the NICU to be prepped for transport. It wasn't until this moment, 4 days later that we were able to each take turns holding him. Joey remained intubated until about day 10, but it was so nice of the nurses to help us move all of his lines and wires and hold him most days. Once he was off the vent, we still had the external pacer wires and box to deal with for the 12 days following, which still made it a challenge, but totally worth it.

Day 3

A baby's heart is formed within the first 28 days of gestation; a CHD occurs usually before the woman even knows she is pregnant.

You never want your baby to need surgery, especially a life-saving one. And finding out during your pregnancy, doesn't really make it any easier. In his first 20 days of life, Joey had more procedures, surgeries, and anesthesias then my husband and I combined. On day 6 he had a catheterization balloon procedure to open a hole in his heart that was closing and to allow oxygenated blood to mix in his heart. One day 8 was the big surgery, Arterial Switch Operation, VSD and ASD closures, and stenosis repair. Surgery went "beautifully" and "perfectly", every doctor stopped us in the halls to tell us that they had witnessed it. Day 9 was chest closure and Day 20 was pacemaker placement. .

This photo was the only one taken post surgery on Day 8. Nothing can prepare you to see your child in that condition. Tubes and wires and pumps and pacers coming from everywhere. After open heart surgery they also leave the chest cavity open to allow for swelling. It. Was. Rough. But also strangely calming, to LITERALLY be able to SEE your son's heart beating, knowing that it was repaired by the most skillful hands. To SEE the results of the miracle that had just occurred... not many people can say that. .

Day 4

In the US, twice as many die from CHDs each year than all forms of childhood cancer combined. .

I will forever cherish the video that we have of this very moment. You'd never think that you would love to hear your baby cry, but this was the first time (besides the few minutes after birth) that we got to actually hear Joey cry. It was perfect. He was intubated for the first 12 days he was alive, and we couldn't hear him cry, cough or make any peeps. It also was a little more of a struggle for Joey to get off the vent because he was dealing with a partial lung collapse as well. Although the crying in this photo was pretty much silent, it was so nice to finally see his face with only a nasal cannula. This was also the first day that he got to try some of Mama's milk and although they would later have to put the NG tube back in, he started off pretty well with his feeds! .

At this point Joey remained in complete heart block and was being fully paced by his external pacemaker. Some of the nurses were really nervous about letting us hold him because maneuvering the pacer box and wires was a big challenge, but we were glad that the nurse this day helped Jamie hold him! 

Day 5

Most CHD children don't look sick. You can't tell them apart from a heart healthy child, but their scars are very real. Beneath their shirts are the battle scars that will constantly remind them of their fight to live. There is no cure. Joey's heart is not fixed. It never will be. We can only hope for future intervention to be minimal. .

Believe it or not, this photo was taken just two days before we got to go home! And the very first time that his face was completely unobstructed!!❤ Joey's scars will forever be with him. He has his chest scar, which was opened twice. His sternum was pulled shut with wires, which will forever be a part of him as the bone grows around it. He has his pacemaker scar above his belly button. This will be opened at least one more time in a few years and he will soon earn another scar above his chest when they move his pacemaker. He also has two drain tube scars, which are some of the most visible because they were punctures. He also has three tiny dots where his external pacer wires were for 12 days while in heart block and some small scarring on his neck and ankle where is PIC lines were. We were lucky to have some of the best heart surgeons choose to mend Joey's heart. Dr. Vaughn Starnes is renowned in his field and is thought to be one of the best in the country. And Joey wasn't the first Sbicca that he worked on. Over twenty years ago he did Joey's Great Grandfather's surgery and just a few years ago he helped Joey's Great Great Aunt Jean's heart also! Dr. Cynthia Herrington was the second surgeon and she was great as well. She studied under Starnes and has helped so many babies and children at CHLA! .

Day 6

During CHD Awareness Week, forget Iron Man and Batman, Joey and all of his heart friends are the real super heroes! .

This photo was taken moments after we found out that we were going home the next day. We were still in the CTICU, and expecting to move to CVACUTE, the step down unit, to continue recovery, but during morning rounds the attending simply asked, "do you want to go home tomorrow?" My answer was an immediate, "yes!" I think we skipped right over the step down unit because Joey had 12 days of recovery and feeding practice while we were waiting for his heart block to clear up, so once they got the pacemaker in and he recovered from that surgery, he was ready to go home! .

The next day was a mix of excitement, nerves and complete terror. We had spent 24 days in the hospital, Joey hooked up to tubes and wires and machines that told us his stats at every moment, and nurses and doctors that responded to every beep and alarm. Then all of the sudden, on that morning, they unhooked him from everything and handed him over... it was the best day and the mix of emotions was overwhelming. .

Day 7

No matter the past, present, or future condition of Joey's heart we are confident that he will be able to handle it. In his short life he has already tackled so much, that he truly is a survivor. What Joey and the rest of the heart warriors need at this point is more research, information, options, and technology, awareness and funding. They have made great strides on all of these areas in recent years, but they need more. Please help spread awareness and in this month of February, when we celebrate love, try and support those that may have been born with a broken heart. ❤

Day 8

The last in my CHD Awareness Week series. And it fitting that we celebrate during Valentine's Day because my love for this little nugget is so immense. He has added so much bright light and purpose to Jamie and my life. Happy Valentine's Day, Buddy! .

For one week each year people are reminded of CHD Awareness and the special love that goes into caring for our little ones born with a broken heart. My family is reminded every day. But it is a good reminder. It's a reminder that knowledge, care, support, and love can help our littles live happy, healthy lives. ❤

Ten Months, Already?

Happy New Year!

2016 was a big year for our family, and although we went through a lot of trying times, the good moments have definitely outweighed the bad.  We can only wish for 2017 to do the same.

Since our last update, Joey celebrated his first Christmas with family and loved every minute of it! We hope you enjoy this month's update and photos (there's a lot of those!).

Health and Medical Update

With only his nine-month pediatrician appointment in December, there aren't many updates for you in this realm.  His pediatrician is very pleased and almost amazed at his growth, and says that his heart and previous surgeries and ailments have not slowed him down at all.  He is still in the 97th percentile for height and 60th for weight.  

He is not concerned with the couple of low average scores on last month's developmental assessment at all, so we are happy to hear that.  He essentially gave Joey the go ahead to eat whatever we are eating, with the exception of whole milk and honey.  

The only thing the doc ordered was a blood draw to check for anemia and the nurse called a few days later to say that everything was normal.   And no news is good news continues to be the trend for his monthly pacemaker checkup.  Although he was so wiggly, and fussy during the test (he ripped the lead off the first time and we had to start over), we received no call to submit the test again, so we are all good!

Our biggest hurdle this month has been constipation.  He sometimes bears down so hard that he cries. We have tried giving him more oatmeal, pear juice, other roughage and some all natural constipation remedies, but they have only helped a little bit... We have now also switched to soy formula, and we are trying to figure out what might be causing it.  Any suggestions out there?

Believe it or not, Joey does not have any doctor's appointments or check ups until March! We have made it 10 months without so much as a runny nose or a cough (knock on wood), I mean, not counting open heart surgeries and stuff... let's see if our boy can stay just as healthy for a whole year!

Firsts and Milestones

This month has been full of growth for Joey, He is getting smarter and smarter everyday and learning more and more.  He is excelling in all of the physical stuff and it will probably be only days until he takes his first step by himself.  He loves to stand, everywhere!  He stands in his crib, in his pack-n-play, next to the couch and coffee table and as long as a somewhat sturdy surface is an arm's length away, he can side step his way anywhere he wants to go.  He is a very fast crawler and can walk very easily when holding on to someone's fingers.

His sleeping schedule is getting better again and he is pretty solidly taking two naps a day and sleeping mostly through the night.  He has been loving these rainy nights and mornings; those are the days that he sleeps the latest! 

He has definitely improved his baby babble as well.  He still loves to roll his Rs and say "baba" and "dada", but has also started to practice his "L" sounds as well as gibberish.  I am still waiting for the first "mama" though...

One of Joey's top teeth has now joined his bottom two, so he is a little three-toothed monster right now.  And now that he has teeth on top and bottom, he loves crunching down on his Cheerios.

Joey celebrated his first Christmas and New Year's, but wasn't quite into either.  He liked seeing all of his family on Christmas. crawling all over everyone's floor, and having new toys to play with, but could care less about unwrapping presents. Although, he DID like visiting Santa, and we got a great photo with him! And on New Year's he slept right through the ball drop (just as we planned)!

Likes and Dislikes

This is where Joey has changed a lot in the last month or so.  Before, Joey's dislikes were few and far between, but now Joey is starting to form his own opinions on things.  He used to eat any and every food we gave him, but now has started to become more picky and he struggles eating some foods that he used to love before.  Joey has also started to show a little separation anxiety when we leave the room or leave for work, he doesn't like to be left alone with no one paying attention to him.  Luckily, he still likes everybody he meets and isn't shy about spending time with new people.  

I think Joey's food dislikes have stemmed from the fact that we have given him so many new, different and exciting foods and has learned that there are a lot of things that taste better then pureed peas.  Joey loves avocado now that he can eat it in the form of guacamole.  He has seems to like chicken and salmon, pasta, rice and beans, scrambled eggs and he loves his teething crackers and Grandma's chicken noodle soup.  He is getting better at self-feeding and is always interested in what the people around him are eating and drinking.

Joey loves playing with all of his toys from Christmas, although we are saving some to open once he tires of the current ones, but he loves toys that have music and sing.  His Great-Great Aunt Jean got him the cutest elephant that sings and plays peekaboo with his ears and Joey loves it!  He got a couple toys that will hopefully aid him in learning to walk, but hasn't quite got a handle of them yet!  And no matter how many toys are out for him to play with he would still rather have a piece of paper, an empty water bottle, a remote control or cell phone... 

Joey has started to learn opposites and loves to play games like "up and down" and "open and closed" where he continuously sits and stands or opens and closes books.  Joey also loves songs and singing.  His favorite is still "Pat-A-Cake" and he laughs and laughs when you sing the alphabet really fast.  

For Christmas Grandma and Papa got Joey a swing and his first trike.  He loves swinging in the swing and can't wait for warmer weather to spend more time in it.  He has ridden his bike a couple times, but still wants the rain to go away so he can ride on it more.

Family Update

Joey LOVED seeing all of his family at the many Christmas celebrations.  We started off with the Sbicca/Shives annual White Elephant party, which included ugly sweaters this year. (In lieu of an ugly sweater, Joey's onesie kindly said that everyone else's "sweater was ugly"). He loved french fries from Pie N Burger and playing with Uncle Sean and cousin Andrea; Joey would crawl away and she would drag him back, over and over again! Joey even got to see his Uncle Nick!

Then Christmas Eve was at Grandma and Papa's where Joey loved playing with Conan and watching him ride his new hover board.  They are best buds.

Christmas began at our house where Joey got to play with some of his gifts from Santa and the rest of the day was spent jumping back and forth between the Sbicca family and Brush family.  We had a great breakfast at Joey's Great Aunt Kathy's, a lunch at Grandma and Papa's and dinner at Kathy's again.  Boy were we all stuffed! 

We are all waiting for Joey's new second cousin to make her appearance in the world!  Any day now... we can't wait to meet her!

Here's one last video for making it all the way to the end of the post!  Joey was caught kissing himself in the mirror!

Thanks for continuing to stop by! See you next month!

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9 Months Old to Celebrate the Holidays

This last month has gone by faster than all the others so far!  It's been spent chasing Joey around everywhere, and celebrating the holidays with family and friends.

Health and Medical Update

A few weeks ago Joey had an appointment at Children's Hospital for a developmental screening.  Since before he was born, he has been a part of a research study that will monitor his learning and development for the first 5 or 6 years of his life.  The study is to try and find any links between children with congenital heart defects and developmental delays as they have seen trends.  The study will require screenings every 9 months or so, and he will continue to do them with the neuropsychology team at CHLA. 

This was his first assessment and it required playing with two fun interns and all of their toys for over an hour.  Joey loved it and did really well considering his nap schedule was thrown off by the appointment and the drive there.  He played with a rubber ducky, blocks, spoons, and lots of other fun things, but everything that they gave him to play with he just wanted to put in his mouth.  While Joey played, I completed some very long questionnaires about his behavior and development, which took over an hour to complete as well. 

The examiners completed both the Adaptive Behavior Assessment System (ABAS-II) and the Bayley Scales of Infant Development (Bayley-III).  For the Bayley-III, Joey's performance placed him on target and average across the domains of cognitive, receptive and expressive language, gross motor skills, social-emotional and adaptive development. The only areas in which he scored low average on fine motor tasks and communication. All of the areas of the ABAS assessment placed him in the average range as well.  

We are lucky to be part of this research study as these assessments done throughout his early childhood would be something that would not be covered by insurance in a regular instance.  So we are grateful.  His next appointment will be when he is 18 months old.   

Joey goes in next week for his 9 month checkup with his pediatrician.  Because of a couple of extra nurse appointments in the last few months, Joey is now all caught up on his immunizations.   He did go in for an extra visit to see another pediatrician right before Thanksgiving as he started breaking out in a rash.  It seems as if he probably had a viral infection and the rash was the last of the symptoms to show.  We did notice extra fussiness in the days before as well as a low grade fever, so we just assumed teething was the culprit, turns out he had caught a little bug.  But all is better now!

Firsts and Milestones

Joey learned to crawl and pull himself up to standing all in the same week!  And since then, there has been no stopping him.  He loves to stand up in his crib and his favorite place to crawl is into the bathroom (for some reason).  He can stand up in his pack-n-play for EVER. (He has been standing the entire time it took me to write this blog post, he just doesn't get tired!)  He also likes to play the up and down game with Papa where he sits down and stands up over, and over, and over. But with all of this gained mobility, comes more bumps and bruises, most of them on his head!

We have introduced lots more foods and more finger foods.  He gets the food in his mouth about half the time, but he has liked most things that we have given him.  We are hoping that his fine motor skills improve with the introduction of more finger foods.  

His two bottom teeth are officially in, and he loves to crunch on Cherrios with them.  One of his top teeth just cut through a day or two ago, with just a little bit of fussing and drool this time around.  We love seeing his toothy smile!

Joey has gotten the hang of the word "baba" and other baby babbling, but has yet to say the long awaited "mama" or "dada".  Maybe he is saving it for our Christmas presents!

Joey's sleep has regressed a little since our last update.  Teething, growth spurts, switching from three naps to two, and a slight disinterest in nursing has all contributed to it, but he is just now starting to get back on track.  But he has learned *just* how loud he needs to scream to get Mom and Dad's attention while in his crib and supposed to be sleeping... (hint: it's really loud).  Jamie and I are still working on trying to let him work through it too.

Likes and Dislikes

Joey has continued his love for hands and it has grown even more this month.  He can get caught up simply looking at his own hands, but he also loves to look at and laugh at everyone else's hands too.  He grabs others' hands and makes them clap, and has started to get the hang of clapping his own hands too.  And if he really likes you he will grab your fingers and put them in his mouth!

Joey loves playing peek-a-boo and pat-a-cake. He has also just started giving big slobbery kisses.  Most of them time he kisses you by opening his mouth and putting your nose into it, but he giggles like crazy when we say "mama kisses".  He still loves watching TV, and it is so funny to see what positions he gets into in his play pen in order to see it.  He sometimes has to squish his face up against the mesh on the side.  

We are also practicing waving and high fives,  but we will only get the occasional (and coincidental) success.  

Earlier this month, Joey really hated the word "YAY".  It scared him a few times when we said it out of excitement,  enough of a scare to make him cry!  But he continued to get a worried look on his face even when we said "yay" without any excitement or if we whispered it.  As time has gone on, he has gotten more used to the word and thank goodness it no longer makes him cry!

Family Update

We had a rough month with pets this month as my parents had to put down our family cat, Dusty after a good 21 years or so, and Scruffy has had some more serious seizure episodes and is now taking medication.  The medication has seemed to help so far, so we hope it continues to keep his seizures at bay.  Scruffy has gotten a little less territorial with Joey this month because he realizes that the little creature that crawls all around the house also drops a lot of food that Scruffy gets to eat! But we are still very careful with the two of them together because we don't want Joey to use his "death grip" on Scruffy's beard or tail.

Joey celebrated his first Thanksgiving with the Sbicca family.  He got to meet his second cousin Caroline and see a few family members for the first time!  We all can't wait until he can partake in the  annual Thanksgiving bocci ball tournament.  

Another big first happened last weekend... It was Joey's first Brush Christmas Party! But because we were so busy visiting with everyone that we could and because Joey pooped out and crashed early, we didn't get any family photos during that night!!!  (I know... WHAT the HECK!?! I'm still upset about it. We almost dressed up in the same clothes the next day to take a photo in front of the tree when we went over to do his pacemaker test...)

We are excited to announce that Joey's future girlfriend was born earlier this month!  One of my besties gave birth to lovely, little Abigail Jane.  She couldn't wait to meet Joey that she joined us a few weeks early!  Joey can't wait for their first introduction!  We are so happy for Kevine and Ryan!

We are also so excited for Joey's first Christmas and to see all of the family again.  We've got our matching family Christmas jammie jams and some of our shopping is done.  Can't wait to update you all next month!  He has already met Santa at CHLA and he was mesmerized by his beard!

See you next year!