Family

Adjusting to Life with Twins

/ lesabrackbill / 6 Comments

We came home from the hospital yesterday afternoon (three full days and a morning spent there) and we’re so happy to be home!

The boys are GREAT eaters and are nursing so well. From the very first attempt they have latched well and definitely eat! So thankful for that because it’s often an issue for “late pre-term” babies like ours.

Both boys lost weight in the hospital – as expected – but the doctor were more concerned than we were. We knew it was because every single interruption, test, etc. made them sleep for a while and they had no interest in eating. We tried to “force” them to eat when they were sleepy and it didn’t work.

We are happy to report that both have gained weight back as of this morning, though they are still right around 5.5lbs. That will change soon! 😍

For those wondering how we tell them apart, we have left their hospital bracelets attached for now, but I’m getting pretty good at knowing who is who! 😍

Isaiah – day four Caleb – Day four

We are definitely in love with our boys. They are SO good so far and remind us so much of Tori. Both have long periods of being “quiet alert” and are so adorable.

As far as my recovery, it has been a little more challenging than the last time, but not unmanageable. The spinal block caused some minor issues – most of which resolved in the hospital. I have only been taking ibuprofen for the past 48 hours and even then it’s not on a regular basis.

I have a lot of post-partum edema (swelling) in my legs, especially, from the IV fluids they pumped into me, and partially from the twin pregnancy. It should go away in a less than a week or two (hopefully sooner).

I’m extremely tired (expected) and moving more slowly than before. But, I have to remember that it’s only been four days and a c-section is major surgery. We’re very thankful for my parents being here for the next month to help with everything!

Above all, we are overflowing with joy that these two precious boys bring to our lives. They are amazing and we love them so deeply! 😍❤️

Thank you for your continued prayer and support! We still can’t believe we have IDENTICAL TWINS!

Welcome to Our World

/ lesabrackbill / 15 Comments

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!

“She was abnormal from birth, you just didn’t know it.”

/ lesabrackbill / 4 Comments

These words have stuck in my mind since meeting yesterday with the neurologist who diagnosed Tori.

The sentence was spoken with the same gentleness she used on diagnosis day, and it came after we discussed the impending arrival of the twins.

I remarked that I couldn’t wait to see them achieve milestones that Tori never did, though those moments might be emotional because she never did.

And that’s when she gently said those words: “She was abnormal from birth, you just didn’t know it.”

I told Brennan that evening what she had said we pondered her words. We were new parents, and there are ranges for each milestone, so we weren’t worried until Krabbe had set in and something was clearly wrong.

But, in hindsight, the neurologist is correct.

Tori never had great head control. She never truly laughed a rich, full belly laugh. Tori never slept well. She hated tummy time. She never ate enough (and threw up much of what she did) and was tiny. Tori only rolled over one time at five months old, right before Krabbe overtook her brain.

It makes us wonder what else was abnormal.

As the boys grow, learn, and develop, I know our joy will be even greater as we watch in wonder at their accomplishments and milestones. We will watch in awe as they learn and develop. It will not make us feel sad for Tori, but rather overjoyed for them because they are HEALTHY. They are Krabbe-free. And they are going to LIVE and grow.

And we can’t wait. ❤️

Completely Different

/ lesabrackbill / 9 Comments

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. ❤️

Hunter’s Hope Symposium 2017 – Day One

/ lesabrackbill / 1 Comment

Symposium time is here!

It's the one time each year we are surrounded by people from all over the world who understand exactly what we have been through. It's the week where we can let our guard down and enjoy these precious moments with our Leukodystrophy family knowing that we fit in here, that we are "normal" here.

None of us would have chosen to be in this position, to be in this "family" of such suffering and grief, but we cherish the relationships and the joy that have come out of everything we have endured.

If grief and pain were measurable, the weight of it just from these precious families here would be astronomical in size; every family here has lost – or will lose – a beloved child (or two), something which has been called the most painful thing a human can endure; and yet, all we see are smiles, joy, friendships, authenticity, and an appreciation for each and every moment. We see hope. And it's amazing.

This is our third year at the Symposium and it's the first one I have been slightly hesitant to attend, for reasons I am still deciphering.

Perhaps it's this: Tori was with us for the first one and she was cherished by all; last year she had gone to Heaven a mere four months earlier and everyone remembered her; will she be remembered this year?

Perhaps this: we now seem to fall into the category of parents who lost their children "a while ago" and it's strange. It's a different feeling being here now, a year after she went to Heaven…not a bad feeling, of course, just different.

I watch the parents with their living children and am amazed at how distant that feels. The suction machines, the feeding pumps – sounds so familiar and yet such a distant memory because I haven't heard them or thought about them in a year. Something that was once part of my daily life now feels like a lifetime away.

I'm not caring for Tori constantly now, and I'm not necessarily grieving anymore (though it will never fully be over), so it's a strange place to be. It's just Brennan and me now.

Perhaps it's strange to be here because it's a time when we're forced to remember that this was our life for fourteen months, and that we did lose our precious daughter. In daily life it's easier to move on because of distractions and tasks. Even though we talk about Tori daily and think of her all the time, it's different somehow to be here surrounded by other families going through the same thing we did.

Despite my emotions through which I am sorting (thanks for letting me process above), I am so happy that we are able to be here again. We're praying that next year we will have a new baby with us ❤️

As always, I will blog about the new research findings and everything else we learn throughout the week. So thankful for Hunter's Hope and all that they do to support Leukodystrophy families.

It's going to be a great week!

The Big Move

/ lesabrackbill / 1 Comment

I’ve moved far too many times in my life.

  • From Hayward, CA to Red Bluff, CA (and then another move within Red Bluff).
  • From Red Bluff to Azusa (far too many moves to count while I was in college!) – 525 miles.
  • From Azusa to Glendora (and two moves within Glendora).
  • From Glendora to Harrisburg, PA (five moves since I moved to Pennsylvania) – nearly 3,000 miles.

Each move has brought with it new adventures, new challenges, new surroundings. Most moves were welcomed, though some came from circumstances I could not control.

This move is different than all of the above.

This move means leaving the home we fixed up, the home where we became a family, the home from which Tori went to Heaven. So many memories in less than four years.

As of this morning, we owned this house for three years, eleven months, and eighteen days. 1,449 days. I haven’t lived anywhere this long since I left my parents’ house when I was eighteen.

And I think that’s partly why I have struggled with the idea of moving. I know it’s the plan, and I know it’s a great one because of the financial progress we will make. My heart hasn’t been communicating with my mind on this one.

But, it is finished. And I feel like this morning brought me closure. 

Let the new adventure begin ❤️