Welcome

If there is another thing I have learned in my motherhood journey this week, it’s that motherhood is full of second guessing. It’s not so much that I doubt myself as much as I hope and pray constantly that I’m making the right decision(s) that are the best for Regan. In the beginning, I was pushing her to take as much as possibly by bottle before putting the rest of her feed in her tube. We were then advised NOT to push her too much, let her rest and get the calories she needed to grow before surgery. Then her medicines were constantly adjusting and we were closely monitoring those. If it wasn’t her feeds or her medicine, I feel sure there’s something next on my list I’d be worried about – it’s not different because of Regan’s special needs, it’s just a fact of motherhood.

So as you likely already know, we have just concluded our first week of tube free feedings. We are so happy to be moving forward with this effort after getting the blessing from our Cardiologist on Monday. What I wouldn’t have guessed ( <- ha, more guessing) is the amount of worry it would bring me. Regan has been dependent on a feeding tube for her whole life, and it’s obvious to me now that this change is not going to happen so quickly and maybe not even so smoothly. I find myself waiting for her to wake up (she’s an AMAZING sleeper) and working with her to make sure she gets the calories she needs. Our cardiologist is confident that Regan has a little wiggle room with her weight and of course she’s going to need to learn her own hunger cues at some point! What I’m quickly figuring out is that it’s a learning curve for me, too. What I have to continuously remind myself is that she is happy and healthy and continues to be monitored by her doctors.

It very much feels like I’m a new mom to a newborn. She is eating on demand and I’m wondering if I’m doing enough to get her the right amount of nourishment. Though I’ll tell you, if this sweet girl is not interested in the bottle, she will not take it. She is as strong in the mind as she is in body, not too different from her namesake 😊. For now, we’ll continue on this trek and continue to pray that she steadily increases her feed amounts to meet what she needs to grow.

As I mentioned above, Regan is a fabulous sleeper. Maybe a little TOO fabulous sometimes, and I look at her sometimes and think – “aren’t you hungry yet??” What I must remind myself is to see the blessing in this for myself. It’s wonderful to get a great night’s sleep and helps me to stay focused with her throughout the day. I’ve found that there are a lot of these little blessings that I need to appreciate. When Mitch and I were in Philadelphia after Regan’s heart surgery, we tried to make the most of our time together. It was the first time since Regan was born that we had a chance to spend a significant amount of time talking and honestly catching up with each other. Mitch said something that I think is so true. He said, “it’s like God gave us this gift for reaching this point with Regan.” It made me realize I have to look for the blessings that we’re given along the way to be sure and appreciate them. I think those blessings are always there, but we don’t always have the perspective to see it.

When we were sent home with her NG (feeding) tube, I really struggled with it. I wanted to get rid of it as quickly as possible. In reality, it was such a blessing to us in a time when Regan was not able to get the nutrients she needed. I’m not sure I appreciated it enough while we had it; it allowed me a certain peace of mind while there were bigger worries and health concerns to be focused on. But hindsight is always 20/20, and now I know to look for the blessings we’re given at every phase of our journey with Regan. Right now, I’ll take my full night’s sleep and continue to pray she builds the strength and hunger to eat the way she needs.

As I’ve said a thousand times, and am likely to say a thousand times again – THANK YOU to all of y’all who prayed and continue to pray for Regan. I have never so strongly felt the power of prayer as I did in the four hours she was in surgery. I had visions of how the day would go – figuring I would spend the time in tears from the minute she left us until the minute I saw her sweet face and know she was OK. Here’s how the reality went..

On Wednesday morning, we headed down to Philly for her pre-op appointment that was scheduled for noon. They told us the appointment would be a few hours long and to come prepared. Even as I type this, that day is a bit of a blur for me. It seemed the past three months had surmounted to those two days, carefully ensuring the correct doses of medicine, correct amounts of feeds, ounces gained and the number one goal – no sickness. We arrived to the Cardiology floor exactly five minutes before we were scheduled. We met with a series of medical professionals – medical assistants, PAs, nurses and nurse practitioners – all to go over various parts of the surgery day and strict instructions for pre-op. We must have heard a description of her heart condition (again) three times in that day alone, along with step-by-step explanation of the surgery itself. Once all that was done, we headed to the lab for some final bloodwork, and then it was a waiting game until surgery the following morning.

The three of us went to the hotel for the evening and I was basically a ball of nerves for the subsequent twelve hours.  I slept for maybe a couple hours, and even in those hours I had dreams of oversleeping for Regan’s appointment. We arrived at CHOP at 6:30AM and the surgery waiting area was desolate except for us, the registrant, and the nurse who eventually came to check us in. The nurse ran us through the same list of questions we’ve gone through a thousand times, not the least of which was “and what is Bridget in for today?” Mitch and I both exchanged looks like – ‘seriously?!’ I have to assume they ask this as a triple check for patient and parent understanding. This part of the day seemed to drag, but before we knew it, the anesthesiology team was there to greet us and run through (yet another) explanation of their process. The anesthesiologist (wish I could remember her name) was a lady probably in her 70s who kindly introduced herself both to us and Regan before she began talking (you’d be surprised the number of doctors who don’t introduce themselves before they just start talking to you). She wore bright pink lipstick, a strand of pearls and perfectly manicured nails. I knew Regan was in good hands. She guided us to the OR corridor where we had to say goodbye. This was exactly as difficult as you’d imagine. I was grateful they didn’t take Regan away on a stretcher, I just had to hand her over to the sweet anesthesiologist (“JUST” is probably not the right word there). I wasn’t ready to let go. I never would have been ready to let go and I’ll never forget that moment for the rest of my life. Nothing can prepare you for handing your baby over to have her life be in another person’s hands. I’ll need to remember this moment when she tells me she wants to move away from home; all I could do was cling to Mitch in that moment.

As soon as Regan went into be prepped, our nurse for the day walked us up to the cardiothoracic surgeon’s office for us to meet him. Dr. Spray ran us through what I imagine is a very routine speech for him. He told us some potential risks (again), but something he said really resonated with me. He gave some statistic (remember how I feel about those) about one of the risks and said “but someone in your position probably doesn’t care much about statistics.”  He had the presence of confidence, and gave us reassurance that he was the best man for the job. Once that meeting was over, Mitch and I were left to our own devices, and promised hourly updates from our nurse.

This is where I thought I would spend the hours crying and clinging to the prayer shawl that my mom’s cousin (thank you, Patti!) gave me. I did spend the hours clinging to the prayer shawl, but I also felt a peace come over me that I couldn’t have predicted. That peace is due to the hundreds (maybe thousands?) of prayers that were said by y’all – we received many many messages from friends, family, acquaintances across the country that contained prayers and promises of prayer for Regan. I truly mean it when I say I will spend my lifetime saying prayers gratitude for that. Your prayers brought me peace and brought Regan back to my arms faster than I could have imagined. I thought her hours in surgery would feel like a lifetime, but in reality, it felt like they flew. Our first update was Regan was headed into surgery, and in the blink of an eye we were getting our second update that she was out and being patched up. Our third update was she was already extubated and to go meet Dr. Spray in the consult room! After meeting with Dr. Spray, we waited (not) patiently to see Regan. THAT is when the time started to drag. Truthfully, the time waiting to see her seemed longer than the surgery itself.

Well y’all know how the story ends – our fighter girl is back home after a week in the cardiac unit. We still have her NG tube (something I once considered a nuisance now feels like a blessing – more on that later), and she’s working on eating while she recovers. She’s on Tylenol and I have not yet given her anything stronger for pain since she hasn’t seemed to need it (aren’t babies amazing?!).

Before her surgery, I read accounts from other moms on what the experience is like. One of the biggest consistencies is that the babies come out of surgery with their personality ready to explode. I couldn’t agree more. Pre-operation Regan was JUST on the verge of smiling and I felt like she was really holding out on me. Within 24 hours of her operation, she became a smiley little bundle of sunshine. We’re still working on capturing it on film, since as soon as I take a camera out, she breaks out the poker face.

Regan is obviously still in recovery, but I continue to be amazed at her strength (sure to be a theme in her life and ours). Thank you thank you thank you for all your prayers. They are felt, heard and have lifted me more than you could possibly imagine and I hope to return the favor as I pray for all of your personal intentions.

I originally had another message planned for this blog post but her surgery description got a little lengthy, so I’ll save it for next week – spoiler alert – it’ll be about “hidden blessings”.

Love y’all!

 

I mentioned in a Facebook post while Regan was in the NICU that the Advent season gained a whole new meaning to me. If you’re not familiar, the Advent season is a season of waiting, hoping, and preparing for the coming of Jesus. For us, it was waiting for Regan to be healthy enough to come home and celebrate Jesus’ birthday. It’s interesting the path we’re on and the timing of everything, because now I’ve gained a new appreciation for the Lenten season as well. Lent is a period of sacrifice and preparation for Christ’s death and resurrection at Easter.  I went to Ash Wednesday mass this week, only the second time I’ve been able to get to church since we brought Regan home. Like any good Catholic, I was late and made it shortly before ashes were distributed (still counts!). I spent that precious time reflecting on this year’s Lent and how it will forever change my outlook on these 40 days.

Specifically, I think of the Blessed Mother and how she must have felt in the 40 days leading up the crucifixion. I am having but a small taste of her feelings, knowing Regan has needed this surgery. Since the day we found out about Regan, I have prayed continuously to the Blessed Mother (and my Mah) for their strength. I remember the hours and days following Regan’s diagnosis during my pregnancy and feeling the tears flow heavily down my face and just repeating the prayer “give me strength”. I couldn’t think of anything else to ask for on my own behalf, because even before Regan was born I knew she needed me to be strong. The days have gotten easier since then, but the hard days are starting to creep up again.

Regan’s surgery has been scheduled for next week, on Thursday March 9. I am very scared. I will once again be praying over and over for strength. My sweet girl will be in open heart surgery for nearly 2 hours and there’s nothing I can do for her but to have strength, to pray and to have faith that the surgery will bring her health and a happy heart (literally!). We have done everything we can do, keeping her healthy (please continue to pray that she stays healthy – surgery will be postponed if she has any kind of infection), and allowing her to rest and gain weight (to quote our cardiologist “almost too good at gaining weight”. Looks like she got the Baringer genes on that one 😉 ).

Regan will be in the hospital for one to two weeks while she recovers from surgery. All of the doctors we’ve seen feel very confident in Regan’s surgery – she’s a prime candidate and they feel she will have a speedy recovery.

We will leave for Philadelphia on Wednesday for Regan’s pre-op appointment on Wednesday afternoon. We don’t have a surgery time yet; we’ll get that on Wednesday, and I’ll be sure to keep everyone updated. Thank you for all your support and prayers along the way. We truly love all of y’all.

Bridget Regan Vowler officially joined the Christian community last night in the witness of our families and her two Godmothers, Bridget Baringer and Michele Vowler. Father Jack, our friend and priest who said our wedding baptized her in our house. The Gospel and Homily message was that we are to model our lives as Christians such that Bridget Regan can model her life after ours, but also that we should model our faith after hers, too. The truth is Regan has already taught us more about our faith than we have taught her, and I imagine it will be this way for most of her life.

We chose BB and Michele as her Godparents because we couldn’t imagine better leaders for her faith journey. From the time I was pregnant, BB and Michele have been at the forefront, eager to know our precious little one and telling me all the fun things they would teach her. They’re both patient, compassionate and loving women, but will also guide her closely throughout her life. We are honored they’ve accepted this role for Regan.

As if I needed any more signs of Divine intervention, I came across the sweetest anecdote yesterday morning and it touched my heart so much I wanted to share it with y’all. Regan truly is our precious angel.

“We’ve got an issue here” the quality control angel called out.
“What’s the problem?” asked God, in a voice that already seemed to calm the concern.
“It looks like an extra chromosome…one, two…yes, right here, an extra one.”
Now smiling, God answered, “That’s not a quality concern…it is…a distinction…the Manual addresses it. You’re new on the line, aren’t you?”
“Why yes…this is my first day,” apologized the angel– searching through the manual for any reference to this.
“I’ll talk you through it…there are just a few assembly modifications. First, locate the hug sensors. Do you see the dial?”
“Yes, right here…oh, I think I tickled her.”
“Turn it up.”
“How much?”
“All the way.”
“Done.”
“Now locate the two smile triggers— they are located on either side of that cute little button nose.”
“I found them.”
“Adjust them a little closer to the surface…closer…closer…perfect!”
“Is that it?” asked the obedient angel.
“Almost,” answered God. Now, very gently, open her heart.
That’s it. Measure two…no, make it three extra scoops of love.”
“Will it fit…it’s so tiny?”
“Oh, these little hearts stretch incredibly. It will fit.”
“Done…is that it?”
“One more thing…move her from the random distribution belt to the select premium belt.
These little ones aren’t just given to anyone.”
“There…she’s done and ready to go,” announced the angel.
God stepped over, as if to inspect the handiwork of this new angel on the line.
But that wasn’t His intent.
Instead, He picked up this little one and held her close to His heart… holding her for so long the angel became concerned.
“Is she alright? Did I do everything as you instructed?”
Still holding her close, God said, “She’s perfect.
I just find it hard to let these special ones go, for they are Heaven to hold.”
And He gently kissed her cheek and sent her to our hearts.

—written by Rik Cryderman, the proud Poppa of one of these babies of distinction, Nella Cordelia Hampton.  To read more about Nella, check out her Mamma’s blog: Kelle Hampton

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In medical news, we had an appointment at CHOP this week. They did an echocardiogram and EKG to check out Regan’s status and readiness for surgery. Regan is 11 lbs (5 kilos) was approved for surgery (!!) and it will definitely happen sometime in the next month. We are patiently waiting for a phone call from CHOP with the scheduled surgery date. We will keep y’all posted once we hear! Regan will likely be in the hospital somewhere around 1-2 weeks post surgery. They surgery itself takes around 1.5 hours, but she will be in the surgeon’s hands for around 4 hours.

Regan’s symptoms continue but the CHOP cardiologist was very pleased with how well they’re managed (we LOVE our local cardiologist!). Regan’s appetite has been crazy the past week and has even been able to take a couple of whole bottles on her own. Her weight gain is exactly where it needs to be and she is a prime candidate for surgery, for which we are SO grateful and blessed!

I will keep y’all posted as we approach surgery and as always, thank you for your continued support and prayers!

I’ve been told my whole life how much I look like my mom. My features and coloring predominantly favor my mom’s side of the family. In fact, when I was in third grade, we had a project where we were to bring in a picture of our parent as a baby so that everyone could see and guess whose parent baby picture belonged to which student. My mom taught at my elementary school, and my third grade teacher approached her and told her I had misunderstood the assignment. My teacher thought I brought in a picture of myself as a baby, when in fact it WAS a picture of my mom. That’s how similar our baby pictures were – it was difficult to tell the difference between the two of us!

It’s such a compliment that people tell me I look like my mom. While recently traveling, my sister just sent me a text that said people kept asking if she and my mom are sisters. And people aren’t asking in the joking-to-be-nice-and-also-awkwardly-flirting kind of way, they’re honestly asking. This either means my sister looks about 20 years older than she is (sorry BB), or my mom looks 20 years younger than she is. It’s definitely the latter, that my mom that looks young – my siblings and I joke that both of our parents are freeze-framed in time at age 40.

As you might imagine, a million thoughts ran through my mind in the hours following Regan’s diagnosis. Admittedly, one of the vainest fears I had was that Regan wouldn’t look like me and Mitch, that her features would favor Down syndrome more than they favored ours. Of course, these thoughts became second to the priority of her health and the focus of her heart condition, so they fell by the wayside for the majority of my pregnancy.

After Regan was born and the nurse put Regan in my arms for the first time, I was overwhelmed with love and like the Grinch’s heart on Christmas day, my heart grew three times in size that day. To a certain extent, most newborns look the same. Their small squishy features take a while to work themselves out in their first weeks of life. While in the NICU and for the first couple weeks at home, our focus re-centered around Regan’s health, gaining weight, feeds and medicine while we settled into a routine. But in the past couple weeks, her features have started to come alive and her facial expressions are more distinct than ever.

More people than I can count have told me how much she looks like her daddy Mitch. I’d be lying if I said I wasn’t jealous, but every time someone tells me it makes my heart swell three times more than when she was born. I’m ALWAYS proud of her, but hearing that other people can see her resemblance of Mitch tugs at my heartstrings in such a different and special way.

I have a feeling that as Regan grows, my (ignorant) fears about her having Down syndrome will be washed away like this one has been. Even in her short 2.5 months, she’s been full of surprises and I can’t wait to see what else she has in store for us.

Happy (belated) Congenital Heart Awareness Day! I apologize for the late post. I experienced a bit of writer’s block yesterday and to be honest, it was a long day for Regan and me. We had a big snowstorm come through which closed our Cardiologist’s office on Thursday, our scheduled appointment day. She graciously agreed to squeeze us in on Friday and asked to come in the morning to be seen. Our wonderful doctor was very short staffed due to the weather and road conditions and so we waited almost 3 hours to be seen. Frankly, Regan handled it better than me (probably going to be the story of our lives). From the Cardiologist we went straight to the hospital to get her bloodwork done, so we were out venturing for most of the day which left me hangry and Regan over-tired by the time we got home.

In honor of Congenital Heart Awareness, I’ll run through the things we know about Regan’s heart…

First, her heart condition is what’s known as a complete AV canal defect. AV stands for atrioventricular, which basically means the hole in her heart runs through both the upper (atria) and lower (ventricles) parts of her heart. Because of the size of the hole, we knew prenatally that the hole would not close on its own and would require surgery. [In some babies, the hole heart is minor and closes on its own] I’ve mentioned this before, but I could not feel more grateful that we knew of Regan’s heart condition prenatally. More than anything, it has prepared MY heart for what we’ve faced and will face come surgery day. Back to heart facts – the large hole in the center of her heart causes the oxygen-rich blood to mix with oxygen-poor blood and that blood is then not properly routed to each station of circulation. The inefficiency of her heart causes more blood flow to the lungs, which is why her labored breathing is the most noticeable of her symptoms. The defect essentially causes the heart to work overtime and enlarges her heart. Remember that the heart functions as a muscle, so it makes sense that a harder working “muscle” enlarges over time as it pumps harder.

Other than her breathing, Regan’s heart condition makes her fatigue and tire out much more easily than a typical baby. She usually does not eat more than about half of her bottle and we are so happy that her feeding tube allows her to get the nutrition she needs until her surgery. We were fully anticipating a feeding tube based on what they told us prenatally.

The surgery will patch up the wall in the center of her heart to divide the two chambers and create two functioning valves instead of one main valve that she has now.

While she was in the NICU, Regan had episodes of SVT (supraventricular tachycardia). In short, it’s a misfiring of her heart where the natural electrical pathways get out of rhythm and the heart rate increases drastically. Oddly, this condition is not related to Regan’s heart defect and is not uncommon in babies, who normally outgrow it by one year. Until then, she is on a medicine call digoxin that slows the pacemaker cells to keep her SVT episodes at bay.

To use our Cardiologists words directly, “Regan is thriving. Her heart is handling everything very well.” Her heart has shrunk in size since and we have started to reach a leveling out of her medications. She is still eating regularly and what she doesn’t take by bottle she still gets via feeding tube. She is the most content baby, rarely fussy and an awesome sleeper.

Regan has already made my heart a softer, more forgiving and compassionate one, and I thank her for that every day.

I hope that sheds some light on Regan’s precious little heart! Have a fabulous weekend, y’all <3