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.

Day 60: There's No Place Like Home

Getting ready to hit the road!

We are finally home!! Dave and I had to do a little convincing to get the green light this morning, but it wasn't hard to get the team's blessing. We arrived at the hospital around 9:00am and were home by 8:00pm. The trip went pretty well all things considered. Viv only cried when it was time for her 6:00pm feed (which we successfully administered at a rest stop) and when we were only a few miles from home. She slept most of the trip, but she was taking in her new surroundings during her calm awake periods.

She was asleep before we even got out of the parking garage.

She seems to enjoy the house and her room so far. We had to rush to get her 9:00pm feed ready soon after we got home. We also gave her a bath which she seemed to enjoy. Thankfully her eyes were closed as soon as she hit the crib. The one positive of having a NICU baby is their schedule. Viv has been sleeping through the night for a while now and only stirs every three hours when it's time for a feed, though lately she's needed to be woken up. She's also very used to noise which means we don't have to tiptoe around the house too much.

So here we are at the end of our NICU journey. I was getting emotional as we walked through the NICU doors for the last time. It's been an intense experience, and we are so grateful for the dedicated nurses and doctors at CHOP. Six months ago we were told our baby had a 40-50% chance of survival, and we decided to uproot our lives to make the most of those odds. It's been difficult, but we can honestly say we have no regrets.

Dave and I would like to thank everyone who has supported us throughout this process. Viv's story isn't over, but we've come a long way. We'll be back at CHOP for follow-up appointments and will be working on her feeding and development while simultaneously monitoring any lingering or new issues related to the CDH. We will continue to post periodically to let everyone know how Vivienne is progressing and how we're settling in. Thank you for coming along with us on this journey; we felt your love and found strength in your support. We hope you'll continue to follow Vivienne's progress as she grows.

Day 59: Tomorrow...?

Peeking over her blanket during a bouncing session. Mom and dad are going to have some big muscles.

Overall Vivienne had a pretty good day today. She enjoyed prolonged calm periods with a few fussy moments mixed in. We are currently considered to be "pending" for discharge tomorrow and feel pretty good about our chances. Viv did end up having one of her meltdowns this evening, but the general consensus seems to be that these episodes are related more to colic-induced discomfort rather than withdrawal. Regardless, it makes the team uncomfortable to see her so distressed, so we'll have to wait and see if they'll end up letting us go. She's definitely going to be a handful while she gets over this colic, but we know she will be happier at home - and so will her parents!

Day 58: So Close

Vivienne had a better day today, but she still spent a few hours being very upset. It's pretty apparent that she is colicky and is still dealing with withdrawal symptoms (which makes her less able to reign in her emotions when she feels the discomfort caused by the colic). The team was originally planning on a Friday discharge but decided to push the date back due to Viv's continued distress. They want to see her improve before they send her home. Dave and I are a little annoyed since there's nothing that can be done for her here that we can't do at home. Plus we just think she'll be happier once she's out of the hospital. The team wants to ensure that there isn't another reason for her distress. This is very unlikely, but I suppose we can't blame them for being extra cautious. We are just beyond ready to get out of here.

Sorry for the lack of pictures lately. Viv has been keeping our hands full these past few days and hasn't had many photogenic moments. Hopefully I'll be able to capture a smile again soon!