Krabbe Awareness Month: Day Twenty

Because Krabbe is an autosomal recessive mutation, the chances per pregnancy are 25% that the child will be affected, 50% that they will be a carrier, and 25% that they will be unaffected. That may seem like a low chance that a couple would have an affected child, but Dr. Escolar told us that she often sees repeats in families.

On diagnosis day we were told two things in the same minute: Tori had Krabbe and was dying, and that we shouldn’t have more children. We were devastated.

Thankfully, we found out about IVF as an option to have healthy children and our twins are not even carriers of Krabbe. ❤

There is HOPE for families like us to have more children, whether through IVF, adoption, or foster care. Krabbe doesn’t have to mean the end of your dream of having a family. 

I made myself a sandwich today and I actually got to eat it…

Probably the strangest blog post title I’ve ever had, but it’s worth celebrating. It may seem laughable to most, but for a mom of 11 week old twins this is a huge victory.

Life with twins is so joyful, but it is also the hardest thing (caring for Tori aside) I’ve ever done.

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Photo Credit: Erin Fortney Photography

To name a few things:

I’ve had to adjust every aspect of my life, including showering. I’ve always been a morning shower person, so showering in the evening when Brennan is home has been an unwelcome necessity, but the few times I have tried to shower during the day didn’t work out so well and one or both babies ended up crying. So I made an adjustment.

I am trying my best to eat well and eat consistently, but sometimes hours fly by while I’m occupied with the boys and I forget. So the fact that I was able to make a sandwich today and eat it is HUGE. I hope it’s a trend that continues. Breastfeeding twins is an adventure and requires so many calories (and so much water), so I need to be better about making sure I eat during the day.

Of course I’m tired – any mom of newborns is. But this twin thing is a whole new level. Until they sleep for long stretches (maybe soon, per the all knowing Google?), this is going to be my reality. Thankfully, I get to sleep most Friday and Saturday nights thanks to Brennan and the frozen breastmilk we have; that sleep gets me through Wednesday of each week, but by then I am longing for Friday evening to come because the exhaustion has returned.

The boys have chosen 3:30-5pm (ish) every day for their “witching hour” (their fussy time) so that makes me SO ready for Brennan to walk in that door to rescue me 😉 He has never felt so wanted, I’m sure! Haha. It’s so hard to comfort TWO babies who both have no idea what they actually require to calm down. 😉

I rarely leave the house and have yet to attempt to leave with both of them by myself. Someday it will happen, but for now we lay low and take it easy.

Each day is filled with opportunities for “mom guilt” because one baby is more needy than the other at the moment. So, I end up holding him more, all the while feeling badly that I am not giving equal time to the other. During those “double melt-down” times it’s a constant assessment of which baby needs me more, and which one I can calm down the quickest.

It will never be easy – it’s just reality of having twins: double the meltdowns, double the sleep exhaustion; but, it also means double the smiles, laughter, and joy.

It has been amazing to observe their personalities emerging, and to see how similar they are to their behavior in the womb. Isaiah is calmer, easier to settle down, and just overall more chill than his brother. Caleb is more vocal (both in quantity and in volume), more curious, more wiggly.

It has also been amazing to watch them grow and change, because with each day they resemble Tori more and more. That’s something for which I had prayed (and will blog about the “why” soon) and I love seeing her in them.

Both are so “nosy” now and are wanting to lift their heads to look at everything. They are strong and hold their heads up really well! We’re so proud of them and their desire to work at these things.

They both love the changing table now – as did Tori – and are SO talkative, happy, and smiley while we change them. We tend to linger there, interacting with them during these joy-filled moments.

Their smiles emerged around eight weeks and made this mama’s heart so full. Tori lost the ability to smile at five months due to Krabbe, so these smiles are worth more than I can express. I will NEVER take them for granted because I know what it’s like to not have them. ❤ I know what it’s like to have a child who cannot express any emotion, so I’ll take the fussiness and anger if it means I can have the smiles.

I am so thankful to be a twin mom, but I want to continue to be real about the challenges. I tend to only post the happy photos on Instagram and not the photos of the hard moments, but know that they exist.

And it’s okay. It’s all worth it. 

Our Birth Experience in Photos

In the exhaustion that accompanies newborn twins, I completely forgot to share our birth photos! We were so blessed to have Erin Fortney Photography present so that I didn’t miss a thing and she exceeded our expectations. Far exceeded.

If you live in Central Pennsylvania and are pregnant, please consider hiring a birth photographer – specifically Erin! – because these are moments you will treasure for a lifetime.

When you have a c-section you are surrounded by blue sheets and it feels like you aren’t able to experience the birth of your children fully. I felt like I missed the first hour of Tori’s life and we only have five or so pictures of what happened while I was on the operating table. Because of this, I didn’t want to miss any of the twins’ first moments, and Erin made that happen!

Here are some of our favorites – it was hard to choose but I couldn’t upload them ALL. 😊❤️ We are so thankful for Erin and cannot recommend her highly enough. And I promise I wasn’t asked to do this or paid for my opinions 😉 People like her are rare these days and I am so thankful that Tori brought us together. ❤

 

 

 

Going Viral

We were so blessed to have the amazing Erin Fortney Photography capture the birth of our twins because it has made me feel like I was more involved and actually present in the room after delivery.

One of the photos she posted garnered a great deal of attention, to all of our surprise:

We love the photo and what it represents, but we didn’t expect what happened next. We were amazed to be contacted by so many reporters regarding our story and it went viral.

They were enamored with Brennan’s persistence in doing skin-to-skin in the O.R. (which to us is interesting because it wasn’t a question in our minds that he should have that experience with the boys, as well) and we definitely talked about that, but we also recognized the potential for Krabbe awareness and made sure they focused on Tori and her story, as well as Newborn Screening. THIS is our true passion in life!

Here’s the current list of publications that have written about us:

Babble: https://www.babble.com/parenting/skin-to-skin-dad-twins-photo/

Motherly: https://www.mother.ly/news/viral-pictures-show-dad-doing-skin-to-skin-with-his-twin-babies-for-a-very-good-reason

Love What Matters: http://www.lovewhatmatters.com/six-weeks-later-she-was-handed-a-death-sentence-how-dads-amazing-skin-to-skin-contact-with-twins-helps-heal-family-after-devastating-loss/

Birth Becomes Her: https://www.facebook.com/56901132/posts/10100975465821040/

CafeMom: https://thestir.cafemom.com/parenting_news/212461/dad-skin-to-skin-rainbow-twins

People: https://people.com/human-interest/brennan-brackbill-skin-twin-sons-death-toddler/

The Epoch Times: https://m.theepochtimes.com/uplift/father-gives-his-newborn-twins-a-shirtless-hug-right-after-theyre-born_2544565.html

The Daily Mail: http://www.dailymail.co.uk/femail/article-5849873/Pictures-father-cuddling-newborn-twins-skin-skin-delivery-room.html

Huge thanks to Erin Fortney for this image and for the write-up on Birth Becomes Her that started it all ❤ :

Dad had requested skin-to-skin in the OR from the moment that he stepped foot in the hospital… he must have mentioned it a dozen times.

He + his wife were preparing to welcome twins in to the world after losing their first-born to Krabbe Leukodystrophy at the young age of 20 months.

Staff told him that it would be tough since he would have two babies and needed to be in a scrub suit over his clothes … So he promptly and without question explained that he had a large arm-span that was ready and waiting to hold his two boys and then took his shirt off and zipped up his scrubs announcing, ‘well then.. problem solved!’

This nurse made sure to advocate for him to all 24 other people in the OR that day — and personally made sure that his request was fulfilled.  – Erin Fortney

Three Weeks!

When we found out we were having identical twins, I knew we were in for an adventure. I expected being exhausted, overwhelmed, and outnumbered; and yet, I had no idea just how much I could love these tiny humans. It feels like my heart will explode with hope, love, joy, and gratitude for these precious babies with whom the Lord has blessed us. ❤️

Today these handsome little men are three weeks old, and I can honestly say that it hasn’t been a blur. Thanks to my parents being here and helping – even during the night shift – I truly feel like I have been able to cherish each moment and not feel like time is flying by without my permission. Their month (plus) visit will end in two weeks and their absence will be strongly felt. And I will be much more tired 😉 For now, I’m taking full advantage of their presence and resting when I can.

My recovery has been as easy as with Tori – only the first four days were rough. I’m very thankful that both c-sections have been uneventful! I’m already back at pre-pregnancy weight since I was all baby, and I’m also thankful for that.


Though they are identical twins, Isaiah and Caleb have distinct differences – both in appearance and personality – and so many of the differences were observed even in the womb! We have found it relatively easy to tell them apart, thankfully.

Isaiah (baby A) is relaxed and “chill” most of the time – as he was in the womb. Easy going describes him to a tee, even when eating. He is sweet and patient and loves to snuggle.

Isaiah currently weighs 6lb 14oz and is 19.4 in long.


Caleb (baby B) is our feisty one – especially while eating! He is passionate about his food. He was the very active and particular one in the womb, constantly avoiding the monitors and kicking his brother, and that has certainly remained true (minus the kicking his brother part)!

Caleb currently weighs 6lbs 9.5oz and is 18.9in long. No, he didn’t shrink – we were originally told the wrong length at birth; he was 18 inches long.


The best part of their pediatrician visit yesterday was seeing their Newborn Screeing results and confirming that they are indeed KRABBE FREE. Seeing the words “within normal limits” almost brought me to tears, even though we knew they didn’t even carry the mutation. That confirmation means the world to us. ❤


They still don’t really acknowledge the other’s existence, something we find so funny. The twin bond seems to be delayed, haha. At least these amazing photos (by Mary Ramirez Photography) make it look like they love each other ;)s


(We were SO blessed to have the amazing Erin Fortney Photography capture my pregnancy, their birth (which deserves its own blog post), and their second day of life, and Mary Ramirez Photography captured their precious newborn stage so beautifully (photos above). Both ladies knew our story and offered their services as a tribute to Tori and to bless our family as we welcomed our “rainbow babies” into this world. We cannot recommend their services enough!)



Similarities:

They both LOVE to grunt and make noises in their sleep (and while awake) and it’s so funny. Sometimes it’s like they are communicating with each other while asleep. They are both great sleepers and wake up every three hours or so (you can count on Caleb waking up every three on the dot to eat!). We can’t wait until they are awake more so that we can have some fun.

They both make the same noise when they have to sneeze and it goes away – something that will be nearly impossible to capture on video, unfortunately, but it’s adorable.

They are both SO strong and can roll over on their side, mostly when mad 😉 They have decent head control already, too! We tried tummy time but that wasn’t a success – they both used their legs to basically crawl off of the pillow that was supporting them! Already!

They both LOVE their hands and arms and, though they don’t have great control over them yet, love to have them by their faces.

I’m sure we’ve observed more similarities, but I can’t remember right now 😉


Sure, we appreciate the newborn stage, and we don’t want to rush their development; but, there’s one thing for which we anxiously await: intentional smiles. Smiling is something Tori lost the ability to do at five months due to Krabbe affecting the cranial nerves, and it was heartbreaking. Right now they smile in their sleep, but I long for the first intentional smiles to happen. I can’t wait until my presence can evoke smiles and laughter and joy – right now I’m comfort and food…mostly just food 😉

Joy doesn’t begin to describe our life right now. We are so blessed by these precious babies and we know that our journey with Tori has only magnified our joy. We can’t wait to tell them all about her. ❤

Welcome to Our World

On September 1, 2017 this embryo was transferred…

…and we found out on September 25th that we were expecting identical twins.

On January 2nd we found out that we were expecting BOYS.

Today, we are thrilled to announce the arrival of The Brackbill Twins 😍

Introducing Baby A, or Isaiah Richard:

Weight: 5lbs 15oz

Length: 19″

Time: 10:07am

Isaiah means “Yahweh is Salvation.” Richard means brave. His middle name is from Brennan’s side, from his father, Kim.

Though unplanned, Isaiah has the sound “A” in it, and he is Baby A.

Isaiah was a prophet of the Lord, one who went willingly even though the messages given to him to preach were difficult and unpopular.

“Then I heard the Lord asking, “Whom should I send as a messenger to this people? Who will go for us?” I said, “Here I am. Send me.”” Isaiah‬ ‭6:8‬ ‭NLT‬‬


And Baby B, or Caleb Kenneth:

Weight: 6lbs

Length: 19″

Time: 10:09am

Caleb means brave, wholehearted. Kenneth means handsome. Kenneth is a family name from Lesa’s side – his middle name is from his grandfather, great-grandfather, uncle, great-uncle, and a long-time family friend.

Though unplanned, Caleb ends in B, and he is Baby B.

The Caleb of the Bible was an explorer (a spy, really), and a loyal follower of God. He did what was right even when those around him were turning away. He was courageous, and he was an example to all who knew him, as we hope our Caleb will be.

“For my part, I wholeheartedly followed the Lord my God. So that day Moses solemnly promised me, ‘The land of Canaan on which you were just walking will be your grant of land and that of your descendants forever, because you wholeheartedly followed the Lord my God.’” Joshua‬ ‭14:8b-9‬ ‭NLT‬‬

“But my servant Caleb has a different attitude than the others have. He has remained loyal to me, so I will bring him into the land he explored. His descendants will possess their full share of that land.” Numbers‬ ‭14:24‬ ‭NLT‬‬


Our hope for these boys is that they will live lives that honor the Lord, that they will love well and be filled with joy, that they will be unafraid of speaking the truth and sharing the Gospel.


After we chose their names, we realized that the initials of our children (in birth order) are VIC, which is the first part of Victoria. The Lord is so faithful to His children!

We cannot wait to tell them stories about their sister and to make her a part of their lives. After all, she technically saved their lives and for that we are so grateful.

Thank you all for your love and support throughout this journey. We are so thankful for you!

Completely Different

I haven’t changed my phone wallpaper in almost two years.

My dad captured this moment only a couple of days before Tori went to Heaven and it’s the last non-selfie photo I have of me and her together. I have had no desire to change it because it’s comforting to me. I like that it’s always there, easy to find, and that it represents the deep trust she had in me.

I like that it’s the same photo day after day.


This pregnancy has been both similar and different to my pregnancy with Tori. In many ways, though it was still relatively easy, hers was more complicated.

Both pregnancies were/are easy in regards to no morning sickness, little discomfort, no swelling, etc. I do not take it for granted that my body seems to like pregnancy!

But there are some major differences:

  • I had gestational diabetes.
  • I had excess amniotic fluid (because of the GD).
  • I gained over 30 pounds.
  • My hips caused me pain constantly.
  • She would sleep through non-stress tests, triggering multiple ultrasounds each week.
  • I tried to deliver her naturally and ended up having an unplanned c-section.

When we found out that we were having identical twins (mono/di), we immediately assumed that we were in for a rough ride.

And, thus far, we’ve been completely wrong.

  • I passed my glucose test!
  • My fluid levels are normal.
  • I have only gained 20 pounds.
  • My hips only hurt while trying to sleep.
  • We will see about the non-stress tests, which start at 32 weeks 😉
  • Even though I have ultrasounds every other week, everything is going as smoothly as possible! No complications; good, steady growth; very active; healthy boys.
  • This c-section is scheduled, and I am happy about it this time!

I had prayed that God would let us have the easy road this time, and while we’re not in the clear until they are born, so far He has blessed us with a normal pregnancy, and we are beyond grateful. I needed this.

(25 weeks and 29 weeks)


We’ve begun to realize that everything about what’s going to happen in April is completely different than with Tori.

  • Boys, not a girl
  • Two, not one
  • No Krabbe, no genetic issues

And we need these differences, too.

Because it will be completely different, there will be less temptation to compare them to Tori. She has her place in our hearts and they will have theirs. ❤️

We have no reason to fear the future with the twins and yet we are going to be waiting…for the NBS results, for the 5/6 month mark (when Tori’s symptoms surfaced), for them to surpass her life of 19 months and 27 days. I think until we hit that mark we will wonder if the genetic testing was wrong, if the Newborn Screening was wrong, if things are going to be the same as they were with Tori.

The boys are going to learn to crawl, talk, walk, run, play…things we can’t even imagine because Tori was robbed of those opportunities. I can’t wait (and yet I can) until they are mobile and able to get away from us – something Tori never could.

Usually the status quo brings comfort; in this case, the differences are refreshing. And we need them.


I wonder what I will do and how I will feel when the boys are here in regards to my phone wallpaper. I imagine that will be an emotional moment, even if the new photo incorporates Tori in some way, because it will be a reminder that she is in Heaven and not here with her brothers.

But, as we move forward in our new adventure, we know that things are going to change, that change isn’t bad; that things are going to be new and wonderful, even if bittersweet, and we will learn to embrace the change and the joy that these precious boys will bring to our lives.

And we can’t wait. ❤️