One Year!

Well, we made it! Our sweet Vivienne turned the big o-n-e on March 18 - a huge milestone in her journey. We celebrated with a small party at our house. Viv played with her cousins and was completely underwhelmed by her first encounter with cake. There were no freak outs or vomiting, so all-in-all it was a success (a low bar - such is life with a baby!).

Viv continues to make progress in all of the important areas. She's able to stand unassisted for a short time, cruises with the help of furniture, and tries her best to communicate with mom and dad. The changes she has experienced over the past 365 days are nothing short of amazing. An outsider would look at her and never know how difficult her start was. The only evidence is a fading scar and a slight sensory issue with textured food. No oxygen. No feeding tube. No wires or machines. All for a baby that was originally given a 40% chance of survival. It's truly remarkable.

As we celebrated this milestone, we spent a lot of time reflecting on our journey. We remembered the devastation we felt when we received the CDH diagnosis, the anticipation we felt waiting for Viv's arrival, and the fear we felt immediately after her birth. Each day in the hospital we watched her surpass all expectations and she continues to beat the odds. We are truly blessed, and we don't take a single moment for granted.

CDH doesn't define our daughter, but it will always be a part of her story. We have enjoyed sharing the first year of that story with all of you through this blog. However, the time has come to move on, and this will be our final post. Thank you for following Vivienne on this journey. Thank you for all of the prayers, positive thoughts, and kind words. Your support has truly meant so much to us.

So what's next? Don't worry - we'll continue updating friends and family as Vivienne grows through social media and other outlets. And as for the 85 posts on this blog? Well, we will be turning them into a book for Vivienne to read and appreciate later in life. It will certainly be a baby book unlike any other!

We'd like to close with a note to our darling daughter:

Our Sweet Vivienne,

Simply put, you are an inspiration. All parents feel pride, but ours is immeasurable. We hope this blog serves as a testament to your amazing strength and that you enjoy reading these posts for years to come.

We didn't know what would happen when we found out about your CDH, but we knew that we loved you and would do anything for you. It was a hard road, but we would do it all again in a heartbeat.

You are the light of our lives, and we love you more than you will ever know.

Love Forever,

Mommy and Daddy

Birthday girl with daddy.

Farmer Viv.

Looking cute in her jammies.

Viv's wonderful nanny Taylor threw her a little birthday party!

Kicking back on her birthday.

Easter fun!

Looking sharp.

11 Months

Our sweet Vivienne turned 11 months last week. It's hard to believe she's going to be a year old soon! Everything has been going really well. Viv is sleeping through the night, has really mastered crawling, and is now pulling up/standing on everything. It's only a matter of time before she tries to take her first steps! The only area where she's a bit behind is feeding. She does great with her bottles and purees, but she is still having issues with textured foods. She's getting there though and this isn't abnormal for a CDH baby. I'm confident she'll be enjoying a variety of snacks in the near future.

Here's a video of Viv showing off her crawling skills:

And, as always, here are a few pictures of our girl.

Just catching up on some reading.

Always so happy.

Working on textured food.

Her new favorite spot looking out the window.

March 1st marks the one year anniversary of when we left home to prepare for Vivienne's birth. Dave and I have been reflecting a lot on our time at CHOP and the Ronald McDonald House. Strangely enough we look back on that time fondly. I'm sure it's largely because everything turned out about as well as we ever could have hoped, but it's also because the experience brought us closer together and allowed us to meet some amazing people.

Sadly, we lost some of those people this past week. We met our friends Pat and Casey at the Ronald McDonald House. Casey was pregnant with her daughter Madi when we first met. Madi was diagnosed with Spina Bifida and Casey and her mom Pat traveled to CHOP from Michigan to have fetal surgery. We quickly bonded and became very close during our time there and stayed in touch after we went home. Tragically, Pat, Casey, and baby Madi were taken in a fatal car accident last week. Dave and I are still in shock and are so devastated for their family. We are so sad that we will never be able to see them again and introduce the girls to each other. Pat and Casey were inseparable, and Casey fiercely loved and protected Madi during a year full of hardship and uncertainty. I don't understand why they were taken like this after enduring so much, but it only reinforces the notion that our time here is short and precious. It's important that we cherish the moments we have and make the most of the time we're given.

10 Months

Yum!

Little Miss Viv is 10 months old! This time last year we were starting to prepare for our time away from home. It's crazy how time flies.

Viv is doing really well. She is crawling (hands and knees, not just an army crawl anymore) and is starting to pull herself up. She's getting into everything and is very curious. Another exciting milestone is the appearance of her two bottom front teeth. Their arrival - along with a cold and sleep regression/growth spurt - resulted in a horrible week of sleep for the three of us, but thankfully we all survived (barely). I'm also happy to report that Viv has mastered her "m" sounds, so the occasional "ma ma ma" is sprinkled in with her abundant and enthusiastic "da da da's."

Here are a few pictures of our girl:

We got some snow.

Viv wasn't very impressed, but she sure did look cute.

"Hi, Mom!"

Full of hope before the playoff game.

9 Months

Well, more like 9 and a half months. The holidays have come and gone, and we have been busy! We recently embarked on a very long (but enjoyable) journey to visit family and friends, and Viv did great on the trip. This has been an exciting time for us. Not only did we get to experience our first Christmas together, but Viv's development has really taken off over the past several weeks. She has a few words - "uh oh" and "dada" being her favorites - and she's crawling all over the place. Baby proofing has shot to the top of the to do list!

Vivienne continues to be in good health and all of her check-ups have been routine. We survived her first fever a few weeks ago and she's overcome a few minor head colds, but overall it has been an uneventful fall/winter. We're hoping to get through flu season unscathed.

We hope everyone had a wonderful holiday and wish everyone the best in the New Year!

Christmas morning!

Loving her new toys.

Standing with the help of an ottoman. 

Enjoying a book in her own special chair.

Christmas Eve!

Happy New Year!

Being indoctrinated by daddy at a young age.

Outgrowing the Boppy lounger!

8 Months

Vivienne turned eight months last week - time is really flying! I can't believe we've been home for over six months now.

Viv continues to make great strides. She's able to sit alone for a short period of time and is able to "army crawl" a bit. Her vocabulary is expanding with new consonants and babbles, and she's finally starting to enjoy solid foods. She's even starting to show affection with drooly open-mouth kisses - the best kind!

The three of us traveled to CHOP at the beginning of the month for Viv's first official check-up within the Pulmonary Hypoplasia Program. According to their website, "CHOP’s Pulmonary Hypoplasia Program (PHP) provides multidisciplinary, long-term care to children with conditions that limit lung growth resulting in pulmonary hypoplasia. The PHP team works together to improve your child’s pulmonary health, evaluate neurodevelopmental growth, monitor and treat any surgical issues that arise as your child grows, meet nutritional needs, monitor for late onset hearing loss, help locate resources and support services near your home, and more."

We had two days of appointments scheduled. The first day Viv saw cardiology for an EKG, blood draw, and echocardiogram. After those tests we met with the cardiologist for a brief evaluation and get his preliminary findings. In a nutshell, Viv has a significant risk for pulmonary hypertension, but she's not currently showing any signs and has improved since her last evaluation. Our day ended in the audiology department for a series of hearing tests. Viv was very cooperative despite being exhausted and passed every test with flying colors. 

We started the second day with a visit to the pulmonologist, who after a brief evaluation stated he was very pleased with Viv's lungs. He basically said she would never be an Olympic athlete, but he expected her to live a pretty normal life with regard to lung function. After pulmonary, we went upstairs for an extensive neonatal follow-up where Viv was evaluated for developmental delays. There were no surprises since we've been working with a physical therapist for months. She continues to have minor gross motor delays but was on target or ahead for fine motor skills and cognitive development. We finished the day with a general surgery appointment where Dr. Hedrick noted that Viv was at the "top of her class." 

We'll head back to CHOP in May for another round of appointments. After that she will return to be evaluated at two years, five years, six years, and then every two years after that.

Viv is really doing well, and everyone at CHOP was amazed with her progress. A stranger meeting her now would never know what she went through - but we certainly do, and every trip to CHOP reminds us of how lucky we are and how amazing our daughter truly is.

Picture time!

7 Months

Our sweet Vivienne is 7 months old and is still feeding tube free! She started finishing all of her bottles after day three without the tube and hasn't looked back. Life is SO much easier without having to deal with it. The tube was kind of like a tether keeping us close to home. Traveling was difficult, and being at home made everything easier. Now we can throw a bottle in the diaper bag and head out without thinking twice, and it's a great feeling! Viv seems to be enjoying it as well. In fact, she's eating more now than she ever did when she had it.

Viv is becoming very active/mobile and is rolling all over the place. She's trying very hard to sit up and wants to explore the world around her. She loves to laugh and babble and is developing a personality. Spoiler alert: she's sassy! Viv is still a bit behind in the strength department, so unassisted sitting and crawling will likely take a little longer than it does for most other babies, but that's fine. Her growth is good and she continues to be long (75th percentile) and lean (10th percentile). She's still not in love with solid food but is starting to come around.

The new nanny is working out really well. The transition was rough, but Viv settled in by the third day, and now the two of them get along wonderfully. Viv is alone with the nanny three days a week and is with the other little boy the other two days. She is still adjusting when it comes to being around another baby. She has another month to get used to it before they will be spending all five days together.

That's pretty much it for now. We head back to CHOP at the beginning of November for Viv's first string of appointments in the Pulmonary Hyperplasia Program. I will be sure to post an update about the visit in the next post.

Picture time!

6 Months

Notice anything missing?? Read below to get the scoop!

Well, more like 6 and half months....sorry this post is so delayed! Things have been super busy here, so let's get right to the update.

Vivienne is doing really well. She is hitting a ton of new milestones and is growing like a weed. She now weighs 13 pounds and 8.5 ounces, and she's over 26 inches long. She's rolling over (front to back and back to front), putting her feet in her mouth, and is able to sit with minimal assistance. We've also started to introduce solids. Viv isn't much of a fan so far, but hopefully she'll embrace all of the new flavors/textures soon.

All of these things are wonderful, but there's one new update we are particularly excited about. Viv has been feeding tube free for about 60 hours (as of this post)!! It was time to switch out her tube a few days ago, and we decided to give her a break and see what she could do. I've noticed lately that she seemed stronger and more efficient with the bottle. I had a feeling that she was ready to ditch the tube. She did well enough the first day that we decided to keep going. She did better the second day, and has finished every one of her bottles today!! She's totally rockin' it, and barring some major regression I think her feeding tube days are behind her. Needless to say we are thrilled and are so proud of our little champion.

In other news - and the main reason we've been so busy lately - our au pair has decided that she would be happier taking care of older children, so she will be leaving us in a few days. The experience has truly been wonderful. Kayla worked so hard with Viv to help build up her strength and improve her eating. We owe a lot to her and are going to miss her! Obviously we weren't expecting Kayla to leave so soon, and we suddenly had to decide our new childcare plan. We had the option of choosing a new au pair or leaving the program. We reviewed other candidates but ultimately decided to decline to continue with the au pair program. Fortunately there was an opening with a nanny share in our neighborhood. We met with the other family, - a lovely couple with a 10 month old boy - interviewed the nanny, and made the decision to join the share. Viv will start next week and Dave and I will be working to make sure the transition is as smooth as possible. We're excited to get to know another family in the neighborhood and think it will be good for Viv to learn from a baby a few months ahead of her.

All in all things are going really well. Vivienne is a beautiful, happy, and funny girl, and we're loving every minute with her. It was impossible for us to imagine that we would get to this point a few months ago, but here we are...and it feels damn good.

Picture time!

First time in her new high chair!

Rice cereal.

"What is this crap?"

"Why are you doing this to me?"

Hopefully the last picture with red cheeks due to tape irritation.

My beautiful girl.

So happy to ditch that tube!

Working on some assisted sitting.

Yummy!