Welcome

After 16 days in the NICU, we are home as a family of three! We arrived home Wednesday, December 21 to a home filled with Christmas decorations and love. Big Thank Yous to the Vowler / Turse families who made our home feel extra loved as soon as we walked through the door – a fully decorated Christmas tree, Christmas cookies in the freezer, poinsettias on our kitchen table, and hugs from the Baringer family awaited us.  We are truly blessed when it comes to family love.

Our first night was probably exactly what you might expect – basically no sleep and our eyes popped open with every peep and squeak from our sweet Regan.

Leaving CHOP was like leaving a luxury hotel. You’re so happy to come home to your own bed but you know you’re leaving behind the best of the best experts and all resources at your fingertips. The doctors, nurses, therapists, consultants were all fabulous and we are immensely grateful for all of their watchful eyes taking care of Regan in her first weeks of life.

I’ve said it once and I’ll continue to say it – thank you to all of our family, friends, acquaintances and anyone who has offered up a part of their hearts this holiday season thinking of us and Regan. We are still settling in, but we’ve had check ups and check ins with visiting nurses (sent to us via CHOP) and we just had our first Pediatrician visit today. All is well; they’ll continue to monitor her weight gain to make sure she’s growing big and strong!

More updates to come – Mitch and I are still catching up on sleep and trying to wrap our heads around this new little love we have. We couldn’t have hoped for a more beautiful Christmas gift.

What’s in a name – a “Bridget Regan” by any other name would be as cute! As any new parents do, Mitch and I talked a lot about potential names for our baby. We had two solid girls’ names picked out, and after Regan was born (we are calling her Regan, by the way), I immediately asked Mitch if he agreed Bridget Regan should be her name. It just seemed right. For anyone reading this who doesn’t know, Bridget is my sister’s name and Regan is my grandma’s (Mah’s) maiden name.

Bridget is an Irish name whose derivative means “exalted one”, “high one”, or “strength”. My sister (we call her BB) has been my role model as long as I’ve been alive. By choice or not, she was the first person I looked up to and she certainly has helped guide my life path to where I am today. My mom has told us that after I was born, she would have to tell BB that she (BB) was not the mom. Again like it or not, BB took on the role of my teacher, my boss, my manager, all depending on the situation.

When we were kids, I was incredibly jealous of BB. Not the most honorable trait, but it’s true. BB is beautiful and always has been. She had no awkward middle school stage that most of us suffer through. I have distinct memories of both friends and even complete strangers stopping my mom to tell her how gorgeous BB is, even from the time we were little. She’s also brilliant and one of the hardest workers I know. When I was lazy in school, she would ask me what my grades were and how I planned on improving them. As a Freshman in high school, I got several Bs on my first report card (GASP!), and she told me I better work on making them As lest my GPA suffer for the rest of my high school career (this really happened). When we were in college, she encouraged me to break out of my shell and helped me adjust to life on campus. When I was about two years old and BB was four, she (allegedly) accidentally slammed my pinky finger in the door because she was in the middle of cleaning the bathroom and I disrupted her routine. What four year old cleans bathrooms?! Answer: BB.

It would be impossible for me to capture BB’s role in my life in one blog post, but she has made such an impact on my life that I couldn’t imagine honoring my daughter with any other name. BB is the epitome of her name – strength.She is strong-willed, smart, compassionate, patient and so full of love. I am so grateful that she’s been by my side through this process and I quite frankly don’t know how I could do this without her.

I can only hope that Bridget Regan will inherit all of her aunt and namesake’s best qualities. She has already shown that she is a strong, sweet girl with a mind of her own. Just the other day she did NOT want to eat and let it be known to her whole NICU room; she had us all in stitches with her little squawks.

Regan is Mah’s maiden name and to be honest, I have just always loved the name. I don’t need to go into detail of how much my grandma meant to me, but if you’re a new reader, you can read more about Mah here.

Medical Update:

Regan has had a few ups and downs (no pun intended) since she was born, but I’m so very happy to report that the general trend has been up. Initially, I was in a rush to get her home, but I know now she needs to take her time while we’re under the best care here at CHOP. Regan was born at a healthy birth weight despite her being a few weeks early, and they want her to keep her weight up and continue to gain at a healthy rate. We started working on her feeds right away, but she has needed the help of a feeding tube along the way. Her feeds improved to more than 50%, but earlier this week she started having episodes of SVT . Basically, this means she has some electrical issues with her heart that causes her heart rate to increase for a period of time before it either returns to normal on its own or a “shock” to her brings her out of it (this can be done a myriad of ways – one example is ice to her head which was very effective for her). This condition is not related to her heart condition and was a new discovery – something we did not know prenatally. The cardiologist has told us that it is not uncommon in newborns and most babies grow out of it by the time they are 12-18 months. Until then, it is managed with medication. Regan started this medication after her first few episodes and I am SO happy to say she has not had an episode in over 24 hours. The doctors expect the medication to control the episodes completely. Just a side note – the episodes of rapid heart rate do not cause her any pain; it is mostly a “nuisance” condition that would only cause harm if she was in an episode for many hours.

Now that the SVT episodes are under control, we can refocus on getting her feeds in. She has been much more alert the past few days and when she’s hungry, she’s a great eater! She just tends to tire out quickly, primarily due to her being a few weeks early and her heart condition. She is such a strong, sweet girl and we fall more in love with her every day.

Thank you to everyone for your continued support, sweet messages, phone calls and prayers. Regan is a fighter and she is getting strength from all of you!

 

The title of this post should actually read “Always ALWAYS listen to your mother.” After phone calls back and forth all day contemplating whether or not I was actually in labor, I finally decided that Mitch and I should head to Philly around 11PM Sunday night. After packing our bags, we made it to CHOP by 1:30AM and we had sweet Regan in our arms at 3:11AM. Needless to say, everything happened very quickly and we are SO very happy she’s here.

Right now, the doctors are waiting or her to be able to eat all her meals without the help of a feeding tube; right now she’s about halfway there. She’s a strong girl and has had multiple (standard) screenings. She also had her first post-partum echocardiogram and her heart is looking exactly as anticipated. We’ll be monitored by a cardiologist weekly once we’re discharged from CHOP. She will likely need medicine to manage fluid build-up around her heart, but that will depend on her symptoms as time passes.

Words can’t describe how happy we are she’s here and we will very likely  be home for the holidays! Looks like I’m in the clear for Christmas gifts this year as there’s no way I could buy a gift better than her.

Thank y’all so much for your continued thoughts and prayers and we’ll keep you updated as best we can! I actually have the least amount of pictures of her on my phone as I spend most of my time with her just staring at her beauty, but here are a few of my favorites I’ve captured so far..

(also on my list is to upgrade my phone as I keep running out of memory – on a related note, I really do not understand iCloud.)

Well my friends, we’ve made it to 36 weeks with Baby Vowler! To celebrate the occasion, we had a CHOP appointment complete with a tour of the Special Delivery Unit. We had a BPP (biophysical profile), full body scan ultrasound, prenatal appointment with Maternal Fetal, blood donations to research efforts at CHOP, meeting with anesthesiologist, and finally a tour of Special Delivery Unit and NICU (neo-natal intensive care unit). Phew.

The biophysical profile measures baby’s heart rate, muscle tone, movement, breathing, and the amount of amniotic fluid around the baby. Go Baby V because he/she passed with flying colors again! We’ve also had several non-stress tests (the one where I’m hooked up to the monitors) and baby moves like crazy right on cue as soon as I’m hooked up to the monitors. I’m one proud mom! Once the BPP ultrasound was complete, we met with one of the Nurse Practitioners who started to work through a few labor-specific logistics. The policy at CHOP is that they won’t have you go past your due date before delivering. Guess what that means?! We have an induction date! Unless something happens sooner, we will check in the evening on 12/26 to start the induction process. Merry Christmas to us! As soon as she said that, I could not stop smiling! Somehow having a firm date makes things seem SO much more real and we can officially begin the countdown.

Baby is measuring steadily between 50-70^th percentiles, and weighs around 6 lb 5 oz currently. Take that with a grain of salt, though, because the ultrasounds can be off as much as a pound in either direction. Either way, baby is growing steadily and on pace for a healthy full term birth!

Some people have asked me if anything about the labor is different than a typical pregnancy. The short answer is no. CHOP has been wonderful and highly encourage vaginal birth, of course keeping health of mom and baby as primary concern always. In other words, the heart condition and Down syndrome do not change the delivery process at all. In fact, at this point, the only reason baby has to be in NICU after birth is for monitoring. The Nurse Practitioner reiterated to us that the baby is doing very well currently, and they don’t anticipate an extended NICU stay; they’ve told us to expect somewhere between 4-7 days. Of course that can always change depending on baby’s condition and stability, but we have high expectations for you, Baby! You’re about to make our 2017 our most interesting year to date!

Some of y’all were able to see the baby’s room at the BBQ shower, but for those that haven’t let’s take a little tour, shall we?

Happy weekend, all!

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Happy Thanksgiving weekend! Shoutout to Sarah and Mitch who reminded me that I’m not off the hook for a blog post this week, and my personal apologies on being a day late!

I love hearing about other families’ holiday traditions, particularly Thanksgiving. I just love the message of the holiday – to be thankful for what blessings you have as we approach the Christmas season and start of a new year. I asked Mitch what his favorite Thanksgiving tradition is and he quickly replied “leftovers”. I can’t argue with that! Is there anything better than a turkey sandwich with cranberry sauce and stuffing?! As a kid, my cousins and I would all venture out to the Houston Thanksgiving Day parade, hot chocolate in tow, before heading back home to prep for the big meal. We usually had turkey and ham (to which Mitch says – turkey AND HAM?! Reminder – big family.), complete with all the delicious sides – green bean casserole, cornbread stuffing, sweet potato casserole, cranberry sauce – canned and homemade, and pretty much every other starch under the sun. We’d have thanksgiving with both sets of grandparents, though sometimes spread throughout the course of the weekend. Thanksgiving (and all other holidays for that matter) at Mah’s house were are a bit of controlled chaos, and at Gema’s – my dad’s mom – my siblings and I get more attention, and our pick of an array of desserts. Gema is known for always having multiple half-gallons of Blue Bell on hand along with enough pies and/or desserts such that each person at dinner could have their own whole. While there are stark contrasts between the two celebrations, each has its own special set of memories and funny stories and a special place in my heart.

Once we had our house and our kitchen renovations were done, Mitch took over turkey duty for Thanksgiving spent with his family. This year, he did a fried turkey and an oven turkey (fail-safe). Even with just the two of us, I love the buzz in the kitchen as he gets everything ready while I prep vegetables to roast. We have the high chair already set up in the kitchen and I can’t help but imagine what our lives will be like this time next year with an almost-one-year-old watching in the background.

My mom always makes us go around the table and say one thing we’re thankful for, so I’ll take the lead in continuing the tradition here. We have so much to be thankful for, but I’ve boiled it down to a short list of five:

1. Support – I’ve said it many times but I can’t even begin to describe how much love we have in our lives, particularly since sharing our news.
2. Mitch – I’m so thankful to have a husband who is strong when I am weak, who works crazy hard to support our family but also because he is so passionate about his business, who makes me laugh even when I’d prefer not to, and makes a mean breakfast sandwich.
3. Family – I am so thankful that we will get to spend the holidays with both my family and Mitch’s family this year. I am thankful that my family has the means to travel to be with us in what I’m sure will be a very emotional (but also exciting!) time.
4. Baby! – We are so thankful that we’ve had excellent medical care and staff monitoring our sweet babe throughout this whole process. I’m thankful for advanced medicine that allowed doctors to identify the heart condition and diagnosis, allowing us a grace period to process everything and prepare for baby. I’m thankful that there have been no other major medical issues identified to date, and continue to pray for healing.
5. Hot showers / baths – Such a simple pleasure to me, but lately it is nothing short of GLORIOUS.

I hope y’all had a wonderful Thanksgiving and share your thankful thoughts with your loved ones!

 

I’d literally just got done telling my friend how my pregnancy has been relatively very easy with minimal sickness. That night, I came down with a bit of a stomach bug that kept me grounded until mid-week. Life is just a little ironic like that! Just when you think you’re in the clear, you get a big reality check. Our diagnosis was similar.

I tell people often that the only reason I opted into the NIPT (non-invasive prenatal testing) was because it was 100% covered by our insurance. It’s actually unusual that it was covered since they typically only cover the testing for mothers already considered to be high risk; when it’s not covered, it can be quite expensive. The phlebotomist that came to the house even questioned why we were having it done (hello, HIPAA violation) since I have no major health issues and we weren’t choosing to find out the baby’s gender. I didn’t even think twice about it after having my blood drawn, considering it to be a “free” option just to be sure I wasn’t a carrier for any major health issues.

Well as they say, the rest is history and now here we are! One of the most common questions I get asked is if I’m glad we know now about our babe (versus a birth diagnosis). My answer is unequivocally YES. I cannot imagine processing the very deep emotions I’ve worked through while also caring for a special needs newborn. Having an early diagnosis has allowed us to reap the benefits of all the positive, inspirational and downright (pun intended) uplifting stories that are out there. But I’ll tell you, it’s not always easy and I expect we’ll continue to have these “not easy” days for the rest of our lives. I’d say somewhere between 80-90% of the time, we’re just plain excited to be parents and looking forward to this new venture. The remaining percentage I’m anxious and scared as our future seems so uncertain right now. I have weak moments where I breakdown and cry for fear of the unknown, and based on what I’ve read from moms of Down syndrome and special needs babes, I don’t think those moments will ever completely go away. There will be milestones missed and other potential health risks outside of the heart condition for which we’ll have to monitor, but those are just the “known unknowns”. The unknown unknown (are you following me here?) is how much joy we’re about to experience as first time parents.

I’ve found myself wondering the difference in journeys between moms who have already have children before they have their baby with Down syndrome versus first time moms who simultaneously have a diagnosis. It’s obviously impossible to compare the two situations, but I think in some ways Mitch and I are blessed to live in a state of ignorance. In so many ways, we have no idea what to expect, no comparisons to make, and we’re getting to experience that first-time-parent bliss together, forcing the diagnosis to take a backseat. I suppose in many ways we’re just getting an early taste for that parental worry since we’re lucky enough to know some of the battles we’ll face.

In the first few days after we found out, it felt like I would need weeks to find happiness again. It felt like a dark cloud looming over us that may never go away. Within days I felt a strength wash over me that I can’t describe. I can attribute this to our incredible support system around us and the power of prayers. Two days afterwards, Mitch and I went over to our friends’ house where we were greeted with love, support and genuine interest in our sweet babe. It would be easy for our friends to be scared to ask or walk on eggshells around us at such an emotional time, but I’ve never felt so lifted in support. They truly are our framily here and I’ll never forget how much I appreciated all of them at a very raw time.

Moments like those are what give me strength to carry on and remind me we have so much to look forward to! I found the video below while lost in the depths of the internets this week and I hope it makes your heart swell as much as it did mine!

 

Baby Update:

We had an appointment at CHOP this week where we met with a lactation consultant, a genetic researcher, and the maternal fetal clinic. The lactation consultant went over a boatload of information and essentially prepared us for what could be some struggles given the baby’s heart condition and trisomy 21. The maternal fetal non-stress test went well (this is now our third non-stress test)! They look for the baby’s movements, how baby’s heart responds to movements, fluid and a few other things that I honestly can’t remember (it was nearing lunchtime when we had our ultrasound so my brain was already thinking of lunch places). We were supposed to get a tour of the special delivery unit but all of the delivery rooms were full so we weren’t able to do that; they bumped that to our next appointment on December 1.

Happy early Thanksgiving! Start thinking about what you’re thankful for before next week’s post 😉