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!

5 Months

Happy baby!

Viv turned 5 months on August 18 and we celebrated by driving up to CHOP for a checkup. Viv's surgeon and all of the staff were very pleased with her progress. She's up to 12 pounds, 5.5 ounces and 25.2 inches long. They commented on how happy she seemed and mentioned that her abdomen and scar look very good.

Viv still isn't drinking from the bottle very consistently but they weren't all that concerned about it, which was reassuring because Allison and I have both been worried that she hasn't been progressing in that area. They think that as long as she doesn't have too much discomfort while she eats (she seems to be getting more comfortable) that eventually she'll figure it out.

The BEST news is that they gave us a new feeding plan that eliminates Viv's 3am feed! We still have to wake her up at midnight and 6am but the new schedule means that one of us gets to sleep for 7 hours uninterrupted every night.

It feels like everything is slowly getting a little bit easier. Viv doesn't fuss as much as she used to and when she does it is easier to calm her down. A lot of that is her reflux subsiding a bit (although she is still definitely bothered by it) and part is just her growing up. In addition to our trip to Philadelphia we went to visit Allison's sister outside Reading, PA last weekend and on both trips Viv tolerated the long period in the car without a single major meltdown.

Getting ready to go see Aunt Lauren and meet her cousins

That's what we've been up to for the past month. Here are a couple more cute pictures.

Hair!

Playtime. She's getting pretty good at choking that red fox.

4 Months!

Hello everyone! Vivienne is four months old already (!) and is doing really well. She loves to smile and vocalize and is getting quite good at her fine motor skills. There isn't much to report as far as changes. Her feeding is progressing slowly with her baseline sitting around an ounce when she's interested. She can take double that when conditions are perfect - she took 65 mLs for me the other day - but those productive sessions are infrequent. We have enrolled Viv in early intervention since a prolonged hospital stay can impact development. Her initial evaluation showed that she is on track or ahead of schedule in most areas, with the exception being feeding and gross motor skills. She will receive two physical therapy sessions each month to help build her strength.

Viv's au pair Kayla arrived last week from South Africa. So far things are going very well, and we are excited to settle into our routine with a set caregiver. We've had a parade of family members come through in the last month to help care for Viv prior to her arrival. It was great fun for us and for Viv, but we're happy Kayla is here so we can all get settled.

Last but certainly not least...pictures!!

Family photo!

....and she knows it.

Fourth of July cuteness.

Totally a daddy's girl.

Happy baby!

Obsessed with her hands.

Tube free for a few hours and loving it.

Bargain hunting at the grocery store. 

Turning the Corner

Well, I know we promised to update everyone on a more regular basis, but here we are weeks after the last blog post. Our lives have been extremely hectic since we brought Viv home, but it seems like things are calming down a bit. Hopefully that will allow us more time to focus on the blog.

Viv is now 3 months old and is finally starting to have more good days than bad. She cries and fusses less and is generally a happy baby.

Obviously we are thrilled about this development. It has been an exhausting month for all three of us, but it truly seems like the worst is over. Viv is very content in her new environment and is changing everyday. She loves giving us big toothless grins and lets out adorable coos. She has discovered her hands and has starting gripping things. She even holds her pacifier in her mouth and like to put her hands on the bottle during feeds.

We had a check-up at CHOP two weeks ago, and everyone is very pleased with her progress. Her growth is good - she's up to 10 pounds 11 ounces and 23 inches long as of yesterday - and she continues to improve with her feeds, though she is still largely reliant on the tube. The doctors have been fiddling with her medication to help improve her reflux, and it seems like those adjustments coupled with age are helping. Her bottle feeding skills have improved and she's doubled her intake over the past few weeks. She now takes about an ounce at a time, meaning 1/3 of her intake is coming from the bottle. Her ability will continue to improve as she grows. The doctors at CHOP said that generally half of the CDH tube-fed babies are off the tube by six months and the rest are usually off by 12 months (a few need the tube longer than that, but we're hopeful that won't be the case in our situation).

One final bit of news has to do with Viv's care. We have hired an au pair through an agency. Her name is Kayla and she is from South Africa. Kayla will live with us and take care of Viv while we are at work for the next year. She arrives in July, and we're looking forward to introducing her to life in the United States.

We also want to say thank you to everyone who has called, texted, emailed, and sent gifts (we're working on thank you notes!). As always your support means so much to us, and we are very grateful.

Settling In

It's been a crazy few weeks, but overall we're happy to report that Vivienne is doing great! She's putting on weight (up to 9 pounds, 5.2 ounces and 22 inches long at our last pediatrician appointment - a gain of 11 ounces in one week!), sleeping through the night except for when we wake her up for feeds, and settling into her new home. We've had two pediatrician appointments since we got back and several in-home visits from a nurse and in every instance she has been pronounced healthy.


Bringing her hands together...so advanced!!



Allison and I are doing pretty well now but the first week after we got back was rough. Viv was throwing epic fits starting in the afternoon and continuing off and on until around 9pm. Complicating matters, I had two overnight out-of-town trips in the first seven days we were home from the hospital. When I scheduled them I assumed we'd still be in Philadelphia and that my absence wouldn't be felt that much. As it turned out, the nights I was gone were probably Viv's worst.

The good news is that Viv seems to have turned a corner. She's been a little moody later in the day but hasn't had an inconsolable meltdown for over a week now. We aren't sure if the issues she was having were related to colic, morphine withdrawal, not being comfortable at home or some combination thereof, but we're just glad that she's calmed down a bit. We were even able to easily console her after a feeding tube replacement (she ripped out the tube she came home with last week). She also made it through her latest bath without screaming her head off...yay for progress!

Enjoying a meal after a successful bath.

Last weekend, Allison's parents were in town visiting and did a lot of work to help us put the place in order. Our house wasn't really put together for a baby when we left for Camden at the end of February and when we got home there were a lot of little things that we needed to do but couldn't seem to find the time. One of those was finishing off the nursery:



Allison's sister Lauren made all of these pillows (with a little help from our nephew Landon).

Overall we're just trying to get into a routine. Our next step is to finalize childcare. We've decided to bring in an au pair from a foreign country through a cultural exchange-type program. Daycare isn't really an option (though we are checking into one in the area for special needs children), and hiring a nanny is extremely costly. An au pair provides steady assistance for a very reasonable price. We'll have to share our home for the next year, but we're hopeful that it will be an enriching experience. 

Finally, here's a few more pictures and a cute video to make up for the lack of blog posts. We'll try to keep Viv's adoring public satisfied in the coming weeks and months.

Her scar is healing very well; it's barely noticeable at times.