The Birth

The Birth

We awoke bright and early on delivery day. I’m not sure how much I slept in the first place. We had decided to spend that last night at home with our two year old, and drop him off for school as part of a normal routine. Thanks to some busy morning traffic that meant we cut it close on our 9:30 am arrival at the hospital, but we made it on time, even with a few minutes to spare.

Family had gathered in the waiting area. My parents, My Brother and his family. J’s parents. J’s brother. Our Pastor was a phone call away, and had planned to arrive by mid-afternoon. We made small talk but no one was feeling chatty or comfortable. I later found out that my mom and mother in law got emotional reading some of the final blog posts. They took turns visiting me in pre-op. No one was sure what to say. Neither was I.

Ironically, I was in early labor any way. Contractions were consistent, although not yet strong. Despite all of the planning and choosing of the date…these boys were about to arrive on their own choosing anyway.

I was taken back to the operating room to start the spinal. That process went as well as it could. There was so much anticipation coursing through my veins that I felt like I had been shot with adrenaline.

I was laid back, arms pinned, feeling helpless and out of control in so many ways as we began the wait for the medicine to kick in.

The Doctor announced to the room that we were expecting a lot of amniotic fluid and to be prepared.

I recall some quieter comments about “fragile heads”.

The neonatologists were awaiting two frail little guys. I had nurses. The boys had nurses. A neurosurgeon was in the room to take a quick look at their heads to assess risk of hydrocephalus. I’m not sure who all was there, but by J’s count there were over 25 people in the room.

Soon there were two more.

First to emerge was Landon.

“That’s a good sized baby!” I heard one of the staff from just behind my line of sight.

No crying.

No sounds.

Just the whispers of a busy room.

A year passed.

“He’s breathing on his own!” I heard someone exclaim.

I lost it. Landon might not have been crying, but I sure was. Justin and I exchanged tearful prayers of thanksgiving just as Nolan, tiny and weak, was escorted by me with the same good news to follow.

Both boys were here and breathing on their own.

They brought the bundled babies over to me for a quick greeting. I was able to snuggle and kiss them both.

They then unswaddled them and hooked them up to the NICU monitors.

Two little miracles and their tubes and wires were rolled down the hall in isolettes.

The parade passed the anxiously awaiting family in the lobby and paused just for a few seconds to let everyone take in the sight of these boys.

There are no photos of this moment, everyone was busy staring.

I later found out that Nolan in particular looked so frail and lifeless, that more than one of those onlookers feared this might be his only day of life.

But he is a champ, as you may recall. And the journey for both boys was just beginning.

 

Mommy meets Nolan!

Mommy meets Nolan!

Mommy meets Landon!

Mommy meets Landon!

DSC_0709 DSC_0715 DSC_0722  DSC_0786

IMG950123

L and N

About these ads

Bird, Plane, Baby

In one day, the boys will turn ONE.

In four days, we will have our super hero themed birthday party!

In between now and then there are a few to-dos.  Between the two nights we’ll have somewhere between 16 to 20 overnight guests.  (Holy slumber party!)  K is so excited he can hardly contain himself.  He can’t wait for his friends and cousins to see his new house, his swing set, and come be superheroes.  The twins are getting geared up as well.  N has decided to do one year old things, like get a couple of TEETH!  L is practicing his smile for the photos.

I’ve spent roughly the last 8 years (8 days) of my life making two tiny super hero capes.  If you could have accomplished that in mere minutes it’s best you keep that to yourself.  I may not have time to clean, get groceries, decorate, or prep for the party…but I WILL finish these capes.  Then we’ll all sit around and look at them.  (Not touching them of course, lest they fall apart.)

In between now and then, I encourage you to participate in the hero challenge!  I’m gathering up the stories and gestures, and they have been so much fun to read!  You all are amazing.

K’s Taxi Service!

I’m a little slow on this, but I wanted to show off our newest gear…”special tomato” chairs!!  We were able to get these for FREE through a program in Ohio for children with special needs.

Turns out they were worth every penny we were fortunate enough not to pay.  I LOVE them.   Let me count some of the ways:

  1. They get the boys off of their backs.
  2. They get the boys up higher, and in a more relatable level for us, and especially for K.
  3. I can use them for feeding by spoon or giving medicines.
  4. They are comfortable enough for the babies to fall asleep in.
  5. They are mobile.
  6. Speaking of mobile, K finally gets to “play” with his brothers in a fun way.  I can’t say enough about how special that has been.

 

“My brothers are in my room!” – Here the boys are playing in K’s room together for the first time.  He is so happy when they are near him.  (Hint…Landon and Nolan did not make that mess)

DSC_0848

 

TRAIN! – Mama and K are playing choo choo train around the house.  Mama is always the caboose…

DSC_0846

 

TAXI SERVICE – K loves running his taxi service, and giving the boys rides.  Sometimes when they cry, he says “I think he is crying for a ride”.  He’s often right.

DSC_0832

Special thanks to Mima and Grandma for helping us put them together during their visit.  And a special thank you to Mipa because K can already work an adjustable wrench better than I can.

DSC_0842 DSC_0839 DSC_0837

Checking in

We are off to a busy but productive start this week:

 

Yesterday marked the last day of the boys’ “max” dose of steroid.  Today we started a 3 week process of weaning them off of it.  We’ve seen progress as a whole, (fewer and shorter spasms).  But we’ve also seen regression lately.  After going several days without a spasm, Landon had 4 on Sunday alone.  The word “discouraged” doesn’t do this justice.  I don’t know what our next steps are yet.  Except for remaining hopeful, prayerful, and being glad that despite these unwanted seizures and spasms continuing to visit, the boys remain peaceful, comfortable, happy, and loved loved loved.

The twins had physical and speech therapy this yesterday.   We came away with some useful instructions and plans.  I hope to design a daily routine that I can use in the evenings to make the most of their alert time.   We also plan to have some training at the day care so that staff can hear the tips and pointers and get hands on demonstrations.

We met with the division of specialized care for children yesterday.  If the boys qualify (aka, are “sick enough”) we could get some help getting a nurse in the home for the day time care.

I interviewed with a newspaper with regard to the hero challenge and the boys’ pending birthday.  Perhaps the scariest question I’ve never been able to answer was posed.  “What does the next year hold?”   I gave the only honest answer I could muster…”I have no idea”.

 

L and N

 

In other news:

-My fantasty football team won. (Hello Matt)

-We tried out a local church, and plan to revisit it.

-I’m learning to sew by attempting to make super hero capes for the boys for their party.

-K and I have our goodie bags ready to deliver to the police, fire, and EMS departments for our next good deed in the “hero challenge“.

-Speaking of which…I hope you will join us in the celebration on or before September 17th.  Submit your good deeds to me via the blog, the facebook page, my email, text, anyway you know how to get ahold of me is fine.  I’ve loved reading about them so far.

 

 

The neck bone is connected to the…

Who knows.  All I know is my head is rarely connected to my body this week.  Maybe it’s the pile of transition related to do items.  Maybe it’s the stress and pressure of hoping this steroid works as well as we need it to.  Maybe it’s realizing K is having a little bit harder time adjusting than we had hoped.  Maybe it is the news that a Liss twin I’ve been following gained his angel wings earlier this week before he could even celebrate a first birthday.  But reality is really distracting me from the day to day.

There’s no denying I have a lot on my plate.  Next week, in addition to a full-time job and caring for 3 kids, we have multiple medicine adjustments, (adding one and weaning two), home health AM visits on Monday and Thursday, PT and Speech on Tuesday, an appt at the house Tuesday afternoon, and OT on Thursday.

But there’s also no denying that I CAN do what needs done…if I can just focus on the task at hand when I’m doing it.  But instead, no matter what I’m doing I’m worrying about something else.

It’s been a bad combination this week.  There have been multiple missteps.  Including but not limited to late paperwork, a late preschool assignment, and we will be starting a new med one day late because I didn’t get to the pharmacy before 7:00 tonight.

I might just pretend this week didn’t happen, get some re-organized to do lists and goals, and hit the ground running again tomorrow.

All that said – there is a lot going well.

We have had our first discussion and first evaluation with outpatient PT, OT and Speech.  The team is very enthusiastic and was pleasantly surprised with a few things the boys were doing.

We’ve submitted our paperwork for the specialized care division, and are hopeful that good things will come of it.

We have had our initial consult with early intervention, and just yesterday met with the Developmental Specialists.  They were equally as enthusiastic, and seemed thrilled that the boys were doing better than they had expected, and thought we had a great setup for them here at the house.

The boys are handling the steroid well.  They are healthy and happy, both of which were big concerns.  They are also still having spasms, although far less frequently and they are shorter in duration.

Nolan weighed in at over 17 lbs this week.

The boys are getting the hang of eating stage 1 foods.  They eat as much as half a container at a time, mostly at day care during lunch, and sometimes in the evenings if they are alert enough.  They are well on their way to being ready for some ice cream at their birthday party.  :-D

 

eating

They are grasping like champs.

 

grasp DSC_0179

 

 

 

 

They are smiling like heroes.

 

DSC_0168 DSC_0169 smile

They are keeping me going, even when I can’t find my head.

 

 

 

 

~

The Hero Challenge

I have a favor to ask of you.  A party favor, if you will.

I have been thinking about the twins’ upcoming birthday since before they were born.  Would they have a first birthday?  And could we possibly celebrate it with true joy?

They will.  And we will.

This will not be a party with cake smashes, icing covered cheeks, or awkwardly toddled steps.  They will sloppily drink formula.  They will have kiss covered cheeks.  And they will be awkwardly and limply handed around by loved ones.

And yet we will still celebrate it with true joy.

These boys.

Our boys.

The boys who “can’t”, perhaps “won’t”, and according to some, almost “weren’t”…are my heroes.  They have inspired so many and yet as of today they are capable of little more than love.

So imagine what YOU could do.  Those of us who CAN, WILL, and ARE…how much more can we accomplish?  Especially if we work together?

My request is simple…go be a hero.  It may be a big gesture or a small one.  One that is known, or one that is done in secret.  You can take a meal, pay a bill, lend a hand, or simply provide a shoulder.  Just do something kind.  Something good.   Then tell us about it.  You can comment on this post, or on the facebook link, I will compile the good deeds, and display them in a special way at the birthday party.  A reminder that heroes come in all shapes and sizes.  And anyone who chooses to, can make a difference.

Go be a hero to someone.  If they ask, tell them Landon and Nolan sent you.  I can’t think of a better birthday present.  And I can’t wait to hear from you.

#happybirthdaytwins

#herochallenge

#twoifbyfaith

Birthday Logo

Practice Makes Less Painful

As the weekend is ending, I am feeling both exhausted and energized.

Let’s start with Friday… in general it was a very stressful morning.  Our home health interview, paperwork, and initial appointment lasted over 3 hours.  During which I struggled with how to draw a very very very expensive to replace gel medicine without compromising its quality and required temperature.  In the process I unknowingly dulled a needle (rookie mistake…I know), and felt horrible about how Landon’s injection went.  Lucky for Nolan I learned a lesson from that.  Unlucky for Nolan his blood sugar machine needed some tweaking, so he had multiple pokes at varying depths before we had a success.  Despite the torture, Nolan’s blood pressure was so elusive that neither of us could hear it.  I ended up driving in to the facility that afternoon and after 3 nurses tried, they finally thought they heard enough to feel confident about the reading.

I had to move our medical records again.  For the first time in this journey someone essentially admitted we were too much for them.  The doctor I had chosen locally to be our family doctor, including the well baby pediatric care for the boys, received a call from Children’s for our home going instructions and one week check up…and decided we should probably be seen somewhere else after all.  I don’t blame them.  I completely understand in fact.  Sometimes this is too much for me.  But no one has ever admitted it before.  I’ve had family, friends, and coworkers bend over backwards to help.  I’ve had two day cares go out of their way to accommodate us.  I’ve had strangers reach out to help us…and mean it.  But for the first time someone thought it over and said no to the boys.  I know I’m overreacting, and I’m thankful they were honest, but for some reason that also made me sad.  There will be plenty of times in their future where the world says “no”  “too much”  or “not here”.  And I’ll learn to toughen up about it.  But I’ll probably also hate it a little every time too.

We had a quick trip to day care where we discussed how to lower their germ exposure, and thankfully determined Ms D will help with blood pressure checks at lunch time.  Followed by a trip to Walmart to gather miscellaneous supplies to help us get set up properly.  By evening, we were back to feeling somewhat optimistic.

Their meds list is long, and changes every few days as we are tapering off of Trileptal.  But it’s easy enough to do.  The injections are getting easier.  The entire process is getting smoother.  What took an hour Saturday morning was down to about 30 minutes today.  We will have our first run without a nurse observing tomorrow morning, and are back to feeling confident.  Who knows…maybe we’ll even make it to work on time!

In other news, the boys do not seem agitated or irritable yet.  Both are eating well and sleeping well.  And…dare I say it…I think we are seeing fewer spasms.  I don’t know how long it should take to be effective, or if I just happen to have missed seeing them today, but I can only recall one from Landon, (not even a cluster) and none from Nolan.  I have such hope that this will work.  And while the daily routine for the next 6 weeks will in some ways make me feel less like a mom, and more like a nurse, I will always say “yes”, “more” and “here with me” when it comes to my boys.

IMG_1798

Not pictured…ACTH injections

 

Today, instead of prayer requests, I’d like to relay a few things we are thankful for.

1) A very very expensive medicine was available to us, and through private insurance and a donor sponsored copay assistance plan, at a cost of $0.

2) I continue to believe the Children’s Hospital we have chosen is a good place for us.  The neurologists call me directly, talk openly with me, and we are in the process of building a great working relationship.

3) I mentioned we were told to find a different local physician.  Children’s helped me call around and multiple names were thrown out.  But we landed on a Dr who already has one patient with seizures who is treated at Children’s.  They understand the dynamic and the information flow.  A bonus I could not have anticipated.

4) The boys are amazing troopers.

5) Maybe, just maybe, these medicines are starting to work on the dreaded infantile spasms.

6) Strength for today, and bright hope for tomorrow.