Welcome

Most of you reading this blog know that I was a swimmer growing up. From the age of 4, my summers were spent in the sun at swim practice in the morning and usually morphed into a full day spent at the pool. By the end of summer my skin tone was closer to that of a coastal Mexican than the average white girl that I am.

My parents joke that through the course of the summer there were, at any given time, somewhere from three to thirty kids at their house ages ranging from 10 to 20, all with just a couple things in common – we were swimmers and we lived in the same neighborhood. Our meets were on Mondays, and I can remember from even a very young age the anxiety / excitement / nerves I would get on Sundays. Not to brag, but my siblings and I were pretty good swimmers ;). Definitely among the best on the teams for which we swam, and generally we knew we would do well at meets. I loved swim meet days and pretty much counted down every week to the next meet day, but still the nerves were an inevitable part of the process.

By the same token, that Sunday night feeling crept up during the school year as every new week approached. As the weekend wound down and the next week edged near, there was always this underlying tone of apprehension, maybe due in part to the incomplete homework assignments I knew were looming to be done some time before Monday morning. By the middle of the day on Monday, that feeling was washed away as the normalcy of the days overtook the fear of the unknown.

^OK, maybe I also get anxiety before I go to Confession…

If you were to ask me how I feel about Regan’s impending surgery, I would liken it to that Sunday night feeling. There’s a part of me that feels confident we are being cared for by the best cardiologists in the country, and there’s another (big) part that feels very anxious about the whole process. I know the surgery will make her feel better, will ease her breathing, will give her more energy, will allow her to eat when she’s hungry and eat a full meal on her own, will allow her to continue to learn and grow the way she’s meant to. I also know that there is a gravity that accompanies an open heart surgery, not to mention open heart surgery on a tiny, 4 month old baby. I pray for her surgeons (whom I have not met) and the entire surgical team that their focus be with Regan on her big day as they take my sweet girl into their talented hands.

I mentioned before that there’s this magical window of time in which Regan needs to have her surgery. I am so very happy to report that all of our Cardiology appointments to date have gone smoothly and I could not be more proud of my angel girl. She is up to 9 lb 11 oz as of yesterday, and actually slightly exceeded the amount they expect her to gain per day. There’s an adjusted growth chart for Down syndrome kiddos, and I honestly don’t remember where they told me Regan is charting, but on the typical baby growth chart, she is tracking in the 25^th percentile! The cardiologist is very happy with how she is doing and is confident that she will be fully prepared for her surgery by March – just have to keep her healthy until then! The goal is for Regan to be 5 kilos (11 lbs in American speak), and she is currently 4.4 kilos. With every appointment, a small bit of my anxiety is relieved, but I know the days approaching her surgery date will bring a wave of nerves like I’ve never experienced. I can only pray that they will be lifted from me once I am able to see Regan post surgery.

In other Regan news, she’s had two major successes since her stay in the NICU. First, her thyroid was testing slightly abnormal while she was in the hospital, so they decided she needed to be re-tested a few weeks after being home. Her thyroid is now normal! She’ll continue to be monitored but this is obviously fabulous news as it eliminates the need to add (yet another) medication to her repertoire. She also failed a hearing test in her right ear while she was in NICU; she was also re-tested for this on Monday and passed with flying colors! Go girl! She’ll continue to be tested on this as well but every passed test is a major celebration over here 🙂

She’s also JUST starting to babble and I swear a smile is coming soon! You can barely hear a little coo here if you listen closely..

[wpvideo P2eAnBOM]

Happy Super Bowl Sunday weekend, all!

 

Why is it that when you reach that point in group meetings or interviews where they ask you introduce yourself and describe yourself that you get instantly nervous? It’s like – I know my name, I know about myself, why am I so nervous?

At the end of nearly every one of Regan’s appointments, the doctor will ask me, “and how are YOU doing?” No matter how many times I get asked, this question always throws me for a loop. It’s like I have to stop and think – how AM I doing?! There’s (understandably) so much focus on Regan’s health, well-being and happiness that I’m totally thrown when someone asks about me. We’ve met with countless social workers since we got Regan’s diagnosis who also ask the same thing. My initial reaction is always, “Good!”, but I inevitably get a look back from whomever is asking that basically says, “..how are you REALLY doing..?”

So for those who may have been wondering the same thing, the truth is some days my answer is still ‘good!’ and some days are hard. The reality is, we’re not much different than any other newborn parents, with just a few differences because of her heart condition. If there’s a silver lining to any of this, it’s that Regan is a great sleeper! It usually doesn’t take her much to rest and fall asleep, so we (and by “we”, I mean “me”) maximize her restful time by resting or sleeping ourselves. Have to admit – even with the extra rests, I think I speak for both me and Mitch when I say we’re exhausted. I only thought I knew what tired meant before I had Regan.

Inevitably, the lack of sleep makes us (again I really mean me) more emotional. The gravity of Regan’s heart condition hits me hard some days. Her feeding and medication is so highly sensitive and important that I find myself slightly on edge, anxious about the next meal, the next medicine dose, careful to do everything “right”, all while realizing that parenting is basically one huge guessing game.

I think I’ve cried at least three times since my mom got here (she arrived about 24 hours ago). We agreed that there’s this threshold you cross once you’re a mother where you’ll basically never sleep the same again. As someone who very much values her sleep, this thought is slightly daunting to me.

I have this distinct memory from when I was living in DC – I was on the phone with my mom as I was getting on the metro and she said “Just be careful. You’re out there getting on trains, meeting people out and walking around! Just please be careful.” Admittedly, I laughed it off at the time (and the memory of it does still give me a little chuckle), but I feel like I totally get it now. The thought of Regan ever being somewhere without me basically gives me heart palpitations (the irony there is not lost on me). But then I bring myself back to the reality that she is just a nearly 8 week old who needs all my snuggles and love right now.

In summary, I am doing well. I’m doing my best to maximize the fabulous help we have and making the most of Regan’s sleep schedule. Some days I feel like I might melt into the floor with exhaustion and some days I feel like a million bucks (relatively speaking, of course).

Regan had her cardiology appointment yesterday where the cardiologist told us she looks the best that she’s seen her since she came home from the hospital. She’s gaining weight like a champ, up to 9 lbs now! The doctors continue to adjust her medicines as needed to meet her symptoms and weight requirements. We are still tracking a mid-March surgery date.

If you’re reading this and you’re in our area and you’re wondering why the heck you haven’t had a chance to meet Regan, please know this: we cannot wait to introduce her to ALL of our loved ones. With her heart condition and until her surgery, it has been strongly advised to us to very much limit her exposure. There is this very sensitive window of time in which Regan needs her surgery and if she gets sick, they will have to postpone surgery. In the cases where they postpone surgery, the babies require at least two surgeries because of the postponement. I wish I could explain why, but my brain reached its capacity in understanding before the cardiologist explained the whole process.

Thank y’all for following us and sending your love remotely while we keep our girl growing, healthy and happy.

What is it about your favorite blankie / animal / pillow that makes you immediately revert back to your childhood? My grandma Mah made each of her grandkids our very own blankies when we were born and my mom recently left it with me to cherish and share with Regan. It’s threadbare and coming apart at the seams. It would be more worn out but she took it away from me when I was in middle school (okay, high school) to salvage it from further destruction. I have vivid memories of running my fingers through the edges and through the patches of animals as I fell asleep.

Kathy (Mitch’s mom) brought over his stuffed animal, Copper, and I wish I could have captured his expression when he opened Copper out of his box. A huge smile flashed across his face as he examined Copper’s features, recalling that his nose is scratched because he used to bang his nose on the table and one of his ears is worn because that’s the one he would rub as he fell asleep.

BB (Regan’s namesake) came up to help me this week at a time I felt I might be ready to break. She brought me my blankie, which became a symbol for her role this past week. She came at a time when I needed some comfort, a security blanket of sorts to help me with Regan. As I mentioned in my last post, sometimes Regan’s schedule can be overwhelming. For the past four days she’s been sharing in her feeding schedule, giving her extra snuggles when Regan just wants to be held, and watching her while I ran some errands, caught up on personal appointments and even got a massage.  She’s gotten a window into our lives, as she called me while I was on my way home from my massage to say Regan had a serious combo of blowout diaper and bad spit up (she’s OK) and Walter had gone rogue on a car driving through our cul-de-sac (not shocking). Everyone is A-OK but when all those things happen at the same time, it can make you feel like YOU’RE the crazy one. To say I’ve appreciated her being here would be the understatement of the century.

Sometimes all we need is a little squeeze of our blankie, and somehow we know everything is going to be OK.

Regan had her Cardiology appointment today, and it seems everything is tracking as she would expect (a good thing!) She is up to 8 lb 9 oz and we continue to adjust medications and food as she grows to keep her heart-related symptoms at bay. We are still shooting for a mid-March surgery date. Thank you for your continued prayers and support, and special thank yous to our BB who lifted my spirits and has given me a physical rejuvenation to continue on our special path.

After having Regan, I will never look at statistics the same again. I remember talking to BB (my sister) after the initial phone call from my doctor about Regan’s high risk Down syndrome test results. I said to her (but mostly to myself) that we had such slim odds of any chromosomal disorder based on my age and medical history, and she said “slim chance is still some chance.” So very true, but when someone tells you odds, you tend to think you’ll fall into the majority category. There’s a reason they call it gambling when you bet against the house.

I was watching Dr. Oz today while Regan was finishing her 3PM feed (#daytimetelevision), and he was featuring a series of “Medical Miracle” stories. One of the feature stories was a boy who survived a terrible car wreck and was essentially decapitated. When he was admitted to the hospital, the doctors gave him a 2% chance of survival. He recovered after intense physical therapy and eventually walked again. This story got me thinking about our own story, and by any perspective, Regan is nothing but a miracle.

Our chances of having a baby with Down syndrome were 1 in 984. I’m going to give myself a little wiggle room here and go ahead and call this 0.1% (1 in 1000 for those who struggle with statistic math). If you were to look at this from the perspective of survival odds – let’s say you walk into the doctor’s office one day and they tell you that you have 0.1% chance of survival, and then you beat the odds and survive –  what a miracle! Telling anyone your story and odds would have them flabbergasted and you’d likely spend the rest of your life praising God for giving you the gift of life. By the same token, Regan our 1 in 1000 miracle to be celebrated!

Lately I should be thanking God for my gift of a husband for being my partner through the long days. Earlier this week, Mitch got sick so I took him off any Daddy duties for a minimum of 24 hours. Needless to explain after last week’s post, the lack of sleep totally threw both of us off our game. The next morning (once Mitch was back on Daddy duty), he slept through the 6 AM alarm to feed Regan. We also happened to have a doctor appointment the same morning. Both of us woke up in a tizzy, trying to decide what to do since she had missed her first breakfast feed. I got (irrationally) upset knowing full-well he obviously did not sleep through 6AM (after waking at midnight, mind you) on purpose. Well, God has a sense of humor because the very next night/morning, I slept right through the 3AM feed and Mitch woke me up at 4AM. Of course Mitch handled it with far more grace and understanding than I did, forgiving me and taking care of Regan while I tried to find my glasses and stumble my way to her nursery. Regan also pulled her feeding tube out from her little nose, so we found ourselves performing that procedure at a time when only the birds should be awake.

This week was quite literally a wake up call to RELAX. The bottom line is Regan is continuing to gain weight and except from the hours of 9PM to Midnight (#witchinghour), she’s a happy, sleepy baby. Our little 0.1% miracle should be my daily reminder to let go and trust we’re doing everything we can to keep her a happy girl.

Regan had two appointments this week – one with Nutrition and one with Cardiology. Nutrition will monitor her weight gain and adjust her feeds as needed. Regan is up to 8lb 3oz, right on track of where they need her to be. The Cardiologist says her symptoms will dictate her surgery date, and right now her little heart is workin’ overtime. The overworking causes some fluid build-up in her lungs, which causes her breathing to be a bit labored. She’s on medicine to keep the fluid at bay, but of course the surgery will eventually be necessary to correct her little ticker. The little blessing in this is that she is monitored very closely by her doctors who will keep a close eye on her until her surgery date (and beyond).

Regan is already teaching me and Mitch to keep everything in perspective while we raise her! Until next time, friends – happy weekend!

In my many days of parenting, I’ve come to realize that motherhood is basically days filled with saying “Lemme Just…” Like.. “Lemme just go the bathroom real quick and then I’ll feed her.. Lemme just load the dishwasher before I go to bed.. Lemme just pump before I jump in the shower.. Lemme just feed Regan before I type up a blog post..” And then the cycle re-starts. In short, all of my “Lemme Just” moments have completely filled the sixteen days we’ve been home from the hospital.

It’s easy to lose myself in the day and before I know it, it’s eight o’clock at night and I can’t exactly pinpoint where the day went. I’m not going to sugarcoat it, Regan’s schedule is tough. She eats every three hours on the dot and is on four medications, taken at seven times throughout the day. In the next four weeks, Regan has at least eight doctor appointments with various specialists, and that number may increase depending on what’s found at each. I literally have a three-inch binder filled with her records and information we’ve collected to date, and that’s only partly because I love school supplies. It’s mostly because there is a boatload of information to retain and every doctor requires recollection of basically all of it.

This post is not a rant about Regan’s schedule; it’s a personal reminder to not wish these days away. It’s a reminder to be present and focused during my time with her. It’s a reminder that not all parents are as blessed to be able to have this time with their little ones. It’s a reminder to me that we have been so blessed with excellent medical care (many would argue the best in the country), and all these watchful eyes are helping us navigate this journey with Regan. I may not have the oodles of time I had B.R. (Before Regan), but I have the best snuggles in the world, and the ultimate best excuse for not getting the little things done.

I LOVE Christmas Cards. I love getting them in the mail, I love sending them, I love hanging them in my house, and I especially love when they’re accompanied by a family update of the previous year. I had grand plans of sending out Christmas / New Year cards with a full update but it seems those little “Lemme Just” moments added up quickly and it doesn’t look like they’ll make it out this year. In lieu of snail mail, I’ll include our Christmas card update here – thank you in advance for your understanding.

Friends and Family,

2016 was a year for the record books. We started it off with a bang; all the Baringers were in town for the holidays and rang in the New Year with a trip to Hershey World and a long night of “Heads Up.” Mitch and I took off for Italy in April to celebrate our one year wedding anniversary. It was the trip of a lifetime full of excellent food, beautiful scenery, unmatched history, and best of all quality time with each other. Shortly after returning home, we were ecstatic to find out we were expecting our first baby! Mitch needed some help at Forrester Environmental, so we made the very scary decision to work together. You’ll all be happy to know we work together very well (though technically right now I’m on maternity leave – thanks, boss!). On the Friday, July 1, we found out our precious baby would be born with an extra chromosome and join the Homies with Extra Chromies club that is Down syndrome. Our hearts were initially very heavy with the news, but we were quickly lifted by family, friends, and fellow “club” members who gave us much to anticipate about our extra special girl. September brought a Florida beach trip to celebrate my dad (Papi)’s birthday, and October we were showered with love at our house in Pennsylvania. And as a grand finale to our 2016, sweet miss Bridget Regan made her debut on December 5. We can’t wait to see what 2017 has in store for our family, and we send all of our love to you and yours this holiday season!

 

Love, Megan, Mitch, Regan and Walter

Medical Update—

Regan has had two pediatric appointments and is steadily gaining weight – tipping the scales at 7lb 12 oz today! She had her first post-NICU Cardiology appointment today (it should also be noted it was our first major outing – phew). Currently, the cardiologist is thinking that her surgery will be some time mid-March, which feels crazy to me that it could be so soon. Thank you for continued prayers of health until she is strong enough for surgery!

 

As of this Wednesday, our little family of three is flying solo. A piece of my heart left as Patti (my mom), Papi (my dad) and BB made their way back to Texas to resume what my dad refers to as “Ordinary Time”, a reference to the time in the church calendar when nothing particularly spectacular is happening. I was talking to BB and we agreed that there is something beautiful about ordinary time.

If home is where the heart is, my heart is always in two places at once. As long as we live in PA, my heart will have a little piece missing that resides in Texas. My mom once asked me if it would bother me if they moved from Houston or Austin, to which my answer was no – my heart lives where they live. I have been saying many prayers of thanksgiving that Patti, Papi and BB had the ability to put their lives on pause for the past three weeks to support me emotionally and physically as I navigate my way through this journey of motherhood. Having them fill our house with this support gave me some ease of emotion knowing they were available at a moment’s notice to change, feed, snuggle Regan when I needed it most. If I missed them a million times before Regan, I miss them billion times more now that she’s here. I’m about ready to book flights for all of them just thinking about it.

After a long morning of tearful goodbyes, Mitch and I resumed to ordinary time as much as is possible with a newborn. Regan is a wonderful baby and I am fulfilling the role of the stereotypical paranoid first time mom. We’ve had two pediatrician appointments – one the day after we got home from the hospital and the second was just Thursday. Regan is up to 7 lb 3 oz, a gain of 4 oz in one week! Go girl! I felt like I asked a million and one questions but my biggest takeaway from the pediatrician was to relax and let our sweet girl eat and sleep and grow. I have been a stressball tracking her feeds, how much she takes by feeding tube versus how much she takes by bottle. I had this (made up) expectation that her independent feeds would steadily increase once we got home and she has pretty much reached a plateau of about 50% independent feeds. I felt like a bit of a failure in some ways, figuring that surely there was a better strategy to get her to eat more. After talking to the pediatrician, she said Regan is exactly where she would expect her to be given her heart condition. That said, our biggest role as her parents is to let her rest when she needs it and here’s the bonus – even when she is sleepy, we have a guaranteed way of getting her calories via her NG tube so she can grow big and strong! We have a slew of appointments coming up in the next couple weeks – cardiologist, endocrinologist, and hopefully more healthy checkups.

As I sit here typing this update (a day late), the hum of the breastpump lingers in the background, Walter has just stolen another stuffed animal from Regan’s collection, Mitch changes Regan next to her window will she squirms and looks around with her big blue eyes, and I realize this is our new normal, our new Ordinary Time. And now I realize our Ordinary Time is forever changed by our extraordinary girl.