Questions, Updates, and a Couple Prayer Requests

Questions.  Normally I don't mind questions.  We all have them.  It's how we learn.  I like it when people ask about Eli's condition, especially when they want more information about the specifics of his heart or ways to help raise Congenital Heart Defect Awareness.  I like it when people ask how the boys are doing, how they're growing, how are each of them doing in school, etc.  We learn by asking questions and questions are a way to show we care.  But then there are other times when questions are inappropriate.  Yes, I realize the person asking may not realize the question is inappropriate.  We've all done that, myself included, but it seems that I've had many questions that I think are inappropriate since announcing this pregnancy.  {Just in case you're behind in our family news, we are expecting our third child!  Due date is May 4}  Many times I just want to answer "Nunyadambidness"  If you need that in plain English it's "None of your damn business."  However, I haven't given that specific answer to anyone yet because a) I'm too polite or b) I'm in too much shock of the initial question.

The following is a list of questions I've gotten in the past few weeks.  They're in unofficial order of my perception of what's been asked most frequently to least frequently but at least once.  Below the question is what I wish I had said/could have said followed by what I actually said or did. 

You must be trying for a girl?
What I wanted to say:  Why do you care? or Nunyadambidness.
What I said:  Actually we're just trying for a baby.  If we get to choose, we'd probably chose boy again.  How fun would life be with three boys in the house?  And since we already have a couple of them, we have a lotta boy stuff and a false confidence that we know what we're doing whereas with a girl we know we have no idea what we're doing.  However, we are mature enough to know that we don't have any say-so in the matter so we will take whichever God has for us.  As Zachary learned to say last year in school "You get what you get and you don't throw a fit."

Was this baby planned or was it an accident?
What I wanted to say:  Why do you care?  or Nunyadambidness.  or How is that okay to ask someone?  or Was that question an accident? 
What I said:  I really don't remember what I said, I'm pretty much in shock every time someone asks this.

Are you planning on more after this?
What I wanted to say:  Why do you care?  or Nunyadambidness.  or How is that okay to ask someone?  or Will we be in violation of some code I don't know about if we were to have more after this one?
What I said:  No, we're pretty sure this one completes our family. 

Aren't you a little old to be having another?
What I wanted to say:  Why do you care?  or Nunyadambidness. 
What I said:  No.  Probably.  Yes.  Depends on the day.  Neither of us were getting any younger and neither of us want to set any Guinness records for having a baby when we're older.

Are you doing your Kegels?
What I wanted to say:  Why do you care?  or Nunyadambidness.  or Do you really want to know the answer to that?
What I said:  Yes, as we speak.  (followed by an uncomfortable pause by the questioner)
***in case you don't know what Kegels are, they're squeezing exercises for women to do with parts they have that men don't.  If you need more info then Google it!

For weeks I wondered if I was just being too sensitive, too hormonal.  But I don't think so.  If it were my sister, a close friend, or someone else with whom I've shared private information those questions wouldn't bother me, but the people asking these questions are not close confidants.  I'm not someone who is easily offended.  Easily annoyed, yes, but you've really got to work to make me mad.  I wouldn't say these questions make me really mad, but it's getting close.  However, I do find the humor in it as well and just enjoy that.  Hope some of you find it funny.  And if you think you're one who has asked one of these questions, please don't be worried.  I probably don't remember who has asked what and if I do I'm not holding a grudge, just getting a laugh about it.

Another question, rather a statement, we often hear that I know I'm too sensitive about is "Well, as long as this one is healthy."  Of course we'd love a healthy baby, but what kind of hypocrite would I be if I said that was our first priority???  Honestly, healthy isn't what I've been praying for.  I've prayed for a happy baby, one that fits in our family just as seamlessly as Zachary and Eli each did.  I've prayed for my health (and sanity) as I deal with the normal pregnancy issues in addition to keeping up with Eli's needs and Zachary's needs.  I pray that I'm able to be there for three kids, to lead them, guide them, and spend enough individual time with each of them.  I pray that whatever this baby is like, we can accept and be prepared to take care of him/her.  But no, I can no longer pray for a healthy baby.  I can hope, but I can't ask God for that.  I don't mean to sound negative, I'm not thinking the worst and I don't have any "mother's intuition" one way or another.  I've just come to learn (maybe because I'm so old????) that I can't dictate that.  The plan is already made.  God knows what's in my heart, I just need to be ready for His plan. 

On that note, this coming Tuesday Bryan and I will be in Indy for a fetal echo and other testing.  Any testing we've had so far has given great news, but this will provide more information.  From what I understand the first part will be an echocardiogram (ultrasound of the baby's heart) by one of the cardiologists in Eli's Indy group.  After that a tech will take over and scan the rest of the baby.  Before we leave, a fetal maternal doctor will review everything and make sure they have all the images they need.  We should definitely have news about the baby's heart that day and I think we will have the other results as well but am not sure on that part. 

Then on Wednesday, Eli and I will be back in Indy for an appointment for him.  He has gotten an appointment with an Ear, Nose, and Throat (ENT) doctor for his recurrent ear infections and ongoing cold symptoms.  Of course he has no runny nose or cough right now and neither ear was red at his monthly check up last week, but this is easily the healthiest he's been since mid-August.  We expect the doctor may recommend placing tubes.  If so, that's normally a relatively minor procedure for most.  However, Eli requires some special considerations anytime we deal with anesthesia so his procedure would have to involve a cardiac pediatric anesthesiologist.  However, we haven't even seen the ENT yet so I'm probably getting way ahead of myself!

Prayers for safe travels both days would be appreciated.  Good news about the baby would also be appreciated but most importantly pray that Bryan and I accept whatever news is delivered.  Pray that the best path is figured out for Eli.  While we certainly don't want to put him through anything he doesn't have to have, he needs long-term relief from these recurrent ear infections.  We need to know what's causing them and treat the source.  And, a little selfishly, if something needs done, it would be easier on us to have it done before the baby comes.

Because of our busy schedule in the middle of the week, I may not post results from either appointment right away.  Please remember that no news doesn't really mean good news or bad news, we're just busy!  Thanks for the prayers and taking the time to read about us.  Remember to cherish Every Little Beat...

Goodbye 2014

I am seeing all kinds of posts on Facebook about ending 2014 and beginning a new year.  After seeing those and knowing the kind of year we've had, I feel somewhat obligated to acknowledge 2014.  So here it is:  Good riddance. 

It's difficult to sum up what our year was like.  It actually blended very well with 2013 which was a trying year for us with Eli's 3rd heart surgery, staph infection, multiple pleural effusions, and seven week hospitalization.  Later that year he was hospitalized again due to the staph and again due to seizures that were later determined to be caused by the combination of his infection and a couple of his medications.  Then Christmas morning 2013 he was vomiting.  After a few hours he felt better and started walking a little bit.  That's when we noticed the limp.  Bryan and I both immediately knew the chances of him having a complication of the staph was as likely as a sprain or fracture.  Have you ever prayed for your child to have a sprain or fracture?  We were.  We never said a word to each other about it because we knew we didn't have to.  If it was the infection there would be plenty to talk about once the diagnosis came, so we just continued our silent prayers for an mild-played-too-rough-on-the-couch-injury.  But by December 30 he had developed fever along with the worsening limp.  We were at Dr. Amy's office that morning and by 3:30 that afternoon Eli and I were in a pediatric orthopedic surgeon's office in Indianapolis hoping he saw some fracture on the xray that we'd all missed.  But no.  He saw nothing unusual about the film but did see what we saw when he looked at Eli...a very ill toddler with a fever and a very serious, complicated history of staph infections and heart problems.  He wanted Eli admitted for further work up and said "I hope that doesn't upset you."  I told him that of course it upset me, but I had also come to Indy with a van full of clothes, our laptop, and other supplies because Bryan and I knew something was wrong.  If that doctor didn't admit Eli, I was taking him to one of his other specialists or possibly the ER to get him in and worked up. 

So December 30, 2013 Eli was admitted four a fourth time that year.  Bryan and I rang in the New Year sleeping on a pullout couch in Eli's room.  New Year's Day, the first day of what was supposed to be a new year, a fresh start for our family, the hospitalist on duty that day got the privilege (I use that term with sarcasm) of telling us that Eli's cultures were positive for staph and he would be staying indefinitely while Infectious Disease, Cardiology, and the cardiac surgeon worked out the best plan.  Over the next three weeks, Eli underwent more scans and tests than I can remember as the specialists worked to determine the origination of the staph.  Some were also calling colleagues around the country to get their opinions because what was happening to Eli was not very common.  Friends with hearts in the right places (and whose opinions we value) gently asked if we were seeking second opinions.  Bryan and I discussed it, but ultimately decided the timing wasn't right.  Eli was still undergoing testing and we didn't have a first opinion yet!  Once the results came in and the team was in agreement that the only thing to do was a Fontan revision (total redo of Eli's third heart surgery) along with pacemaker and wire removal, it made sense to us.  What was there was "bad" and needed taken out.  It was pretty simple.  We didn't want to go anywhere else with strangers taking care of our baby.  We were in our second home with people who loved him.  The three weeks prior to that the team had many disagreements among themselves (no, never in front of us and never unprofessional in front of us but we are bright enough to pick up on unspoken disagreements and don't forget that we've known all the parties involved for several years now).  Bryan and I both knew that everyone involved truly cared about Eli (and maybe even us!) and would make the best decision for him. 

So on January 21, Eli was back in the OR for over 8 hours.  Initially his postop recovery was wonderful.  Then he began having seizures.  Then he wasn't waking up the way he should have or the way he had from his previous surgeries.  More testing led to the diagnosis of his strokes.  Not just a stroke, but many large strokes on his little brain.  We spent days not knowing if he would ever have more than the blank stare and occasional cry that we had to guess if it was related to pain, frustration, boredom, or something else.  Then came some "uh-huh" "uh-uh" answers that were appropriate to questions we asked.  Then one night when the respiratory therapist came in to do his breathing treatment he said "Mommy."  I was so excited I didn't even cry about it until a couple hours later.  Even more exciting than that was a couple days later when Bryan was changing movies for him.  Bryan asked "Do you want Scrat?" which is what Eli would call his Ice Age movies.  Eli answered "uh-uh."  Usually his answers would stop with the one word, but this time was different.  After rejecting the Ice Age movie he said "Madagascar."  It wasn't clear, but it was how he had pronounced that tricky word prior to his strokes.  Bryan and I stared at each other for a minute.  That one word was more precious to hear than him saying mommy to me.  It meant he remembered something (however small) that was important to him before the strokes.  It meant he could put the proper word with a thought and express that to us.  Him saying that was probably the single most impressive moment of his recovery because it meant that Eli, our Eli, was still in there and was fighting to get out. 

His fight continued for many weeks after that.  He is still fighting today.  Not only does our son have to fight every day, every hour, every minute with half a heart to lead a full life, he has to overcome the effects of multiple massive strokes.  And he does.  It's a battle that Bryan, Zachary, and I fight right beside him but Eli is our leader.  And we've followed him through all the stages of his amazing recovery. 

I don't remember where Zachary was last New Year's Eve.  I don't know what he wore to school most days of kindergarten or what was in his lunch because I was in Indy.  Bryan had to play single dad with Zachary again and I was thrown even deeper into the world of insurance, care planning meetings, therapeutic assistive devices, new medications, and keep Eli on a very strict therapy schedule.  Zachary had to go through over half his kindergarten year with Eli and Mommy away from home.  But we all did it.  How?  Beats the devil out of me.  What other choice did we have? 

Yes, 2014 had many, many, many good things that I won't forget.  Eli's recovery, the way the four of us have held on to each other, and the news of expecting our third child are our top three favorites.  I won't rank our least favorites because we really don't sit and dwell on all the negatives.  But they have taken their toll on each of us.  I know life for everyone is full of ups and downs.  I'm just tired of our ups and downs being so extreme.  It's exhausting.  I'm tired of seeing how strong my family can be.  So, yes, good riddance to 2014.  We'll never forget and I won't try to.  However, even though I'm usually somewhat of a sentimental sap who thinks time goes by way too quickly, I'm ready to close 2014.  I don't know if I'm ready for what 2015 may bring, but I know we have each other. 

This New Year's Eve we are spending together.  The boys planned our menu last night so tonight's supper was coneys, bbq cocktail wienies, cheese fries with bacon, macaroni and cheese, and brownies.  We washed it down with cherry Kool Aid.  The boys have had their baths and are now watching ridiculous movies while wearing matching pajama pants from Christmas.  We have a bottle of sparkling white grape juice in the fridge (which I've never tried before) and plan on putting our air mattress in the middle of the living room because apparently we're all having a sleepover in the living room tonight.  I dare any of you to top the fun we're having (that is a sincere comment, no sarcasm anywhere in that).  I had this on my mind all day and took a little time away from Despicable Me to get these thoughts out so I can concentrate on my family for the rest of this year. 

Thank you doesn't begin to express our gratitude for everyone who has helped us in any way, big or small, throughout this last year especially.  Please keep us in your prayers.  That's been the biggest help to us.  We appreciate all of you and hope you truly feel that.  We pray each of you has a safe New Year holiday and many more positives than negatives in 2015.  Happy New Year to all of you from all (5!) of us!!!  And never forget to cherish Every Little Beat...

We Have a New Project...Will You Help Us?

Eli's MVPs is beginning a new project.  We have been so blessed in so many ways.  We have always said we started Eli's MVPs for two reasons:  1) find ways to help Eli through his struggles now and as an adult and 2) to help others.  We have been able to do some small things for others over the years, but now are ready for our biggest project yet.  We are having a Hospital Donation Drive. 

Over the years we've spent many, many months at Peyton Manning Children's Hospital.  More months than I care to count!  Over the course of those months we've been helped by the hospital staff and the Child Life department in many ways.  We've been given toys for Eli to keep him happy during procedures, to entice him to participate during therapy sessions, or even just to pass time on a slow afternoon (not that we had many of those!).  Zachary wasn't forgotten and often received a toy or book when he came to visit Eli.  Bryan and I were given many toiletry items that we either didn't have time to pack or ran out of during our lengthy admissions.  We were also given gift cards for restaurants close to the hospital and sometimes even gas cards to help us with visits and travel.  I have lost count of the number of blankets, stuffed animals, books, toys, and other items we've received over the years from the hospital alone.  However, as we go through items I can usually recall the occasion which each item was given to us. 

Also, throughout our many admissions we've noticed items that are often used but not necessarily supplied by hospital funds.  For example, Eli always had body wash/baby shampoo available to him from the hospital, but rarely was baby lotion available.  We began packing our own large bottle and labeling it with our name so he could be slathered in it after a bath.  It's very important to keep his skin moisturized because hospitals are so dry.  Often, the nurses and aides will take turns buying large bottles of lotion and keeping it in their lounge.  When giving a bath, they'll put some in a small cup and take that to the patient's room.  Other items I found out the nurses bought were hair detangler (especially for little girls for whom thorough hair washings are difficult), nail polish, hair bows, ball caps, etc.  Those items are mainly for kiddos on ventilators.  They help make the child look more natural and it may ease some of the discomfort parents and siblings feel when seeing the patient on all that machinery. 

Some of the things we used often were items that were on loan to us, but were very instrumental in keeping Eli content.  These items include a portable DVD player, movies, use of an iPad, and many toys in the beloved play room (including the Cozy Coupe car that he thought of as his own!). 

Our goal with this Hospital Donation Drive is to purchase items to donate to the hospital so they can be given to patients and their families to help them through their tough times of illness or need.  We are asking for your help with this project.  Here is a list we've complied based on our own observations, input from staff, and the hospital website donation request page. 

Infant/Toddler, Preschool/School Age, and Teen Suggestions:

- baby lotion, spoons, and bibs                                              

- infant, toddler, & child size toothbrushes

- musical crib toys or toys that play lullabies                         
- infant toys (rattles, musical toys)
- board games                                                                         
- Play-Doh
- wooden puzzles                                                                   
- crayons, coloring books, markers, paper, stickers     
- superhero action figures                                                       
- Matchbox & Hot Wheels cars and sets       
- Barbies & accessories                                                          
- journals
- nail polish & manicure sets                                                  
- DVDs (especially teen interest)                   
- building kits                                                                         
- bath & body care products                          
- anything to help little ones breathe deeply and blow (bubbles, small pinwheels, kazoos, party favors)
- anything Colts or Pacers (i.e. hats, shirts, pennants, bobble heads, jewelry)
- popular character toys (i.e. Dora, Sponge Bob, PAW Patrol, Thomas the Train, Disney princesses & other Disney characters, Teenage Mutant Ninja Turtles)

 Comfort Items:

- kid themed pillow cases                  

- fleece blankets                     

- dolls or stuffed animals                   

- pajamas and onesies (all sizes)
- character slippers                 
- socks (especially ones w/grip on bottom)

 

Parental and Miscellaneous Item Suggestions:

- travel size toiletry items (shampoo, soap, toothbrushes & toothpaste)

- "luxury" travel size toiletry items (lotion, deodorant, hair conditioner, floss &/or mouthwash)

- stress balls                                        
- chap stick                             
- gift cards to restaurants       


This list is just some suggestions.  Other items are welcome but please remember any items donated must be brand new due to infection control concerns for hospitalized patients.  You may also donate money so we can purchase needed items or to be combined with other donations and purchase larger items (such as portable DVD players, Wii and PlayStation games, new release DVDs, etc).  Please remember that the hospital has patients ranging from newborns to eighteen year olds, so a variety is important.  If you donate money, please contact us directly, don't use the collection boxes for monetary donations. 

We are working to finalize drop off sites but currently we will have collection boxes at the following locations:  Daviess County Abstract Company (4th floor German American Bank) and Holiday Inn Express (across from Cherry Tree Plaza).  Or you may contact Eli's MVPs (812-254-7359 or elismvps@yahoo.com) to arrange for drop off, pick up, or with any questions you may have.  We plan on collecting items until Friday 2/6/15 so we can deliver them to the hospital the following week....which just happens to be Congenital Heart Defect Awareness Week (convenient how that worked out, hmmm???).  We are also printing fliers with the suggested items and drop off locations.  We will be looking for places to display those fliers so any offers of help will be appreciated.  Also, if your business is willing to be a drop off location, please contact us as soon as possible so we can get a collection box to you.  We're hoping to have the boxes available beginning the first week of January.   This is a project we have talked about for a long time and are finally in a position to execute.  It really means a lot to us to give back to a place that has given us so much.  Peyton Manning Children's Hospital employees and staff have saved Eli's life multiple times, made us feel at home, treated us like family, prayed with us, cried with us, celebrated with us, adopted our family for Christmas, and earned the highest respect from us.  Through that facility we have made lasting friendships with staff and other families.  To be able to repay them in this small way and know we are possibly bringing a moment, however brief, of happiness to a patient or a patient's loved one is very rewarding.  Please consider being a part of that.  What a better way to start a new year than by helping hospitalized children?  Thank you in advance for helping. 

Ultrasound Results

Yesterday's ultrasound gave us the best news we could get from that level of testing!  As best as they can tell, baby has four heart chambers and working valves.  Yea!!!!  All the other things checked out well too (kidneys, spine, amniotic fluid, etc).  We will still go to Indy in mid January to have a fetal echo.  That will give us more details about baby's heart and its structures.  There will also be other scans that check other areas of the baby.  The more info we have, the better.  

Here are a few pictures from yesterday's ultrasound: 

 

The tech did a great job of getting a picture of the four chambers.  It was difficult because it's a working, beating heart and hard to get a picture at just the right moment!  Have four chambers ever looked so cute???

Baby's profile

Baby's spine and profile.




And here are a couple of me with a growing belly:

 

 

My baby bump!

Measuring the belly.  So far I've grown 5 inches and gained almost 17lbs. 

 



Thanks again for all the support and prayers. Yesterday's news was wonderful and we are so thankful for that.  We hope everyone is getting ready for Christmas and remembers the true reason for the season!

Update and Two Prayer Requests

Hello!  It's been a long time since we've posted and I apologize for that.  For the most part things have been going pretty well.  Eli has battled several small colds, ear infections, pneumonia, and a nasty stomach bug since our last post.  Currently he has a headcold and double ear infection.  This has been almost constant for him this fall.  We may need to look into getting an ENT appointment for him.  First we're trying a different antibiotic to see how he responds to that.

In other news, some of you may not know but we are expecting again!  Baby Veale #3 is due May 4, 2015.  We announced the pregnancy early this time for a couple reasons.  Number one, we lost a pregnancy last year when I was nearly 11 weeks along.  We hadn't yet told anyone I was even pregnant so it was really hard to tell people I was losing the baby they didn't know we were having.  This time, although we didn't know what would happen, we decided we didn't want to risk that kind of heartbreak again.  We told early on so that we could celebrate the excitement of another baby and in case we lost the baby, family would already know and be able to offer their support.  Reason number two for telling early is because I was showing very quickly this time!  I was in maternity clothes by eight weeks! 

Now I'm 19 weeks along, just shy of the halfway point.  So far everything has gone very well.  I'm past the morning sickness phase (by the way, "morning" sickness really needs re-named!).  Now I'm just trying to adjust to my growing belly.  So far today I've hit it with the refrigerator door twice today.  I'm getting better though, yesterday it was four times by lunchtime!  Poor kid. 

Later this afternoon, we'll head to my OB for a routine ultrasound.  Today is the day we could find out if we're having a boy or girl.  But we won't find out.  We didn't with Zachary or Eli and we liked waiting until delivery.  What's a thousand times more important than the gender, is to find out HOW this baby is doing.  Does this baby have four working heart chambers?  Is its heart rate and rhythm normal?  And many other questions.  In addition to today's ultrasound, we'll go to Indy when I'm about 24 weeks.  There we'll have a fetal echo and other scans done.  That will give even more answers to this baby's overall health status. 

So I have a couple prayer requests for Eli's MVPs today:

-  pray that Eli's ear infections clear up and stay away.  Overall he doesn't act very sick, but he has a pretty high pain and illness tolerance.  He's not at 100%

- pray this ultrasound doesn't show anything abnormal for this baby.  As much as Bryan and I are trying not to think about the "what ifs," it's difficult not to worry. 

Thank you all for the continued support.  We're grateful for each of you.  We will post updates to Eli's health and our ultrasound as time allows!

First Day of Preschool

Today Eli went to preschool.  That's such a normal thing to say and I like it!  I wasn't really ready for him to go.  When Zachary was that age, we signed him up in April and he went to school in September.  I was still emotional about it but I had had five months to prepare myself.  Eli's time span was two weeks.  On the very first day of the school year, we got the call to schedule the evaluation with therapists and then exactly two weeks later he started. 

He was as ready as he was going to be.  He woke me this morning saying "I go to school today!  I sing songs and do my stuff."  We kept up the excitement until we actually got in the door at school.  He wasn't so sure then but he kept on.  He has his own little cubby with his name on it for his backpack, but he wasn't ready to take it off.  So he wore it into the classroom and met some of his classmates.  I got a picture of him with his teacher.  Well, he was trying to get away from his teacher, but I got the picture!  Then he gave me a good hug like Zachary does when we drop him off at school.  Eli was starting to get a little whiny but I just told him bye and I'd see him soon. 

Soon after I got home my phone rang.  It was the school.  Oh no, could he have had a meltdown they couldn't handle? (not that I don't trust them, but what else was I to think?)  Did he cry so hard he passed out?  Nope, nothing like that.  Mr. Jim just called to tell me that although Eli had some tears and crying time which was calmed by rocking with his teacher, he was doing well.  I honestly thought that's what he would do, but it was so good to hear that!

Bryan was able to come with me to pick up Eli and he was so cute waiting at the door for us.  He was very excited to see Daddy because that was a surprise.  Then we ate lunch with Aunt Ashley and Mamaw Betty and now he's napping.  He was full of news about his class and said he had fun.  And he said "Yes" when his teacher asked if he'd come back on Wednesday. 

Eli is at a preschool that is associated with the school system in town.  He will go two mornings a week and he will be in regular preschool classes.  Therapists come to the school and he will receive PT and OT through them.  He had OT today.  We're so grateful he has this opportunity to be with kids his age and work on his social skills. 

Here are a few pics of Eli on this big day:

Strapped in his car seat ready to go to school.  His "pack-pack" is on the floor beside him.
 

The boys wore matching shirts today.  Zachary was so happy for Eli to be going to school.

Walking up the sidewalk to his door.  He was ready.
If you look at his left hand you can see a blue glove on it.  That's his neoprene brace to help pull his thumb out into a more normal position.  He also wears kinesiology tape along his index finger for the same reason.  He wears those things for a couple hours each day (that's our goal anyway!)

Mr. Jim opened the door for Eli just as he was reaching for it. 

Six Months

Six months.  Six months ago this morning we sent our precious, precocious little boy off for his fourth open heart surgery.  We had no idea how long the operation would take, mainly because the surgeon told us Eli's situation just doesn't happen very often and he didn't know for sure how much he would need to do once he "got in there".  So we waited.  And waited.  And waited.  January 21, 2014 was a long day.  Eli was in the OR for over 8 hours.  He was on bypass for almost five hours.  During bypass, the body is chilled (I've never asked how low...some details are better left unknown) and the heart is stopped.  A machine is used to pump the blood so the heart isn't moving as the surgeon operates.  As efficient as the method is, there is no substitute for the real deal and there's a risk of major organs not getting enough oxygen when the body is on bypass.  But what alternative did we have?

After an exhausting day we were told to meet Dr. Abraham in the Family Lounge of the PICU.  That was normal.  When he came in he smiled to see the large group of us who had waited all day (myself, Bryan, Zachary, my mom, my sister, Bryan's mom, dad, sister, and aunt).  And of course we were all wearing our Eli's MVPs tshirts and sweatshirts in various colors.  He told us the operation went well and Eli was being settled in his room in the PICU.  Dr. Abraham was pleased with how Eli was doing and gave us a rundown of the operation.  It had taken him a long time to get through Eli's scar tissue to even start the actual revision of his Fontan.  Everything took longer, but overall Dr. Abraham was optimistic.  He is a man of few words, but he doesn't mislead in any way.  If he was pleased, we knew we could feel the same.  

After another hour or so we were allowed to see Eli.  After his Fontan (the third heart surgery) we thought Eli looked great.  After this revision we thought he looked even better than the last time.  Eli was extubated without problems a few hours later (I had walked downstairs to Subway and when I came back Eli was extubated!).  We were so relieved to see his good color, his good vital signs, and have him breathing on his own.  But that relief was short-lived.  He started having a lot of twitching.  At first we attributed it to the anesthesia (that has happened to him before).  But as the night went on, the twitching increased even with the administration of some medication.  Eventually we knew he was having seizures.  He was also not waking up which is something he had started at this point with his other three surgeries.

I won't repeat everything that happened over the next couple days, but Eli had a lot of exams and testing done.  Finally, they were able to confirm what we and everyone else thought was happening:  Eli had suffered strokes.  One stroke on the left side of his brain and several on the right side of his brain.  The doctors had no guesses what Eli's prognosis would be.  Over the next few days, Eli made a few advances.  He slowly started waking up more.  I had spent many hours in his room praying he would just open his eyes.  His eyes moved around the room but we weren't sure if he could focus on anything.  He fussed and cried.  He was inconsolable at times and we had to guess what his needs were.  Those things, plus all the other frustrating things he was experiencing, were torture, but the worst was just not knowing.  Was this the best he would ever be?  Was he going to improve from this point?  Don't get me wrong, we were so grateful that our little guy was alive (and actually thriving from a cardiac standpoint) but what kind of life would it be?  Would he be bedridden?  Would he walk?  Would he speak again?  Could he see?  Would we ever be able to care for him at home?  An even bigger fear for us, was he the Eli we knew before surgery?  Would that little boy ever be able to show his personality to us or was he gone forever?  It was scary, frustrating, and a blur.

We received lots of support through those times.  Staff from all over the hospital would stop by to see Eli and check on us.  Nurses from the general peds floor came for many visits and gave lots of hugs.  It was hard for them to see Eli like that when they had just spent several weeks with him making him laugh and letting him boss them around.  Often I would catch them wiping away tears as they left.  The Child Life Specialists were always looking for ways to offer help.  One respiratory therapist found out Bryan and I liked purple Gatorade.  The next morning we found a bag with six of them for us.  And of course the messages, emails, and texts from our family and friends was huge.  We weren't able to personally answer a lot of them, but we read them all and cherish the gestures.

The days passed.  Remember those hours I spent praying he'd open his eyes?  Fast forward six months and now I have many times when I feel like a hypocrite for begging him to slow down and go to sleep for a few hours!!!  It's a wonderful feeling!  Not only did Eli open his eyes, he also spoke, he smiled, he laughed, he sat up, he held his head up, he swallowed, he ate, he drank, he walked, he ran, he raised his arms above his head, and many other things.  None of those things have been easy.  We've all worked hard to help get him this far.  He still has a lot of work to do, mostly with that left hand and arm.  But he has come so far. 

None of the doctors were ever pessimistic with us, they were just very honest and said there was a lot of potential damage.  At the same time, they were optimistic with us.  They would often offer stories of encouragement about advances they had seen with other patients.  I don't remember any of their stories having as much recovery as what Eli's had, so I don't know if he's more amazing than their other patients or if they just didn't want to set our bar too high in case Eli's recovery wasn't this good.  Either way, we're grateful for their guidance. 

A large part of Eli's recovery is because he was started in therapies so early after his strokes.  I think he was evaluated and started with physical, occupational, and speech therapies within a week of his heart surgery.  I vividly remember one day when PT and OT were working with him together.  It couldn't have been more than 10 days after his surgery.  Lynn and Erin got Eli to the edge of the bed and then to the floor.  The two of them stood him up and held him there for a few seconds.  It was difficult.  He had no head or neck control, he had no movement on his left side, very little on the right, and he couldn't be held under the arms because he was just a few days out from open heart surgery.  He was very verbal with his dislike for it, but they needed to see what, if any, strength and tolerance he had in his legs.  There wasn't much.  As I watched those two women (who were two of the most instrumental in his recovery) hold him up, I felt faint and was nearly sick to my stomach.  It was a combination of pride for what he'd already overcome, hearing his weak cries without words as we forced him to do something he had no interest in doing, and the realization of how much he couldn't do for himself all hitting me at once.  But I had to get over it quickly and help them get Eli back in the bed.  Because he couldn't be lifted under the arms, it took three of us to get this 35lb+ kiddo back into bed.

Another memory I have was a personal attitude adjustment for me and it came straight from Eli himself.  I work really hard to find the positives in most situations and we've been put in some pretty desperate situations.  However, by this point it was getting tough to stay positive.  It was two or three weeks after Eli's surgery and strokes.  Because of the flu outbreak, the hospital had some very strict visiting guidelines which meant Zachary couldn't visit.  I hadn't seen him for so long and he needed a mommy visit as much as I needed him.  Bryan was with Eli and I was saying my goodbyes.  As I was kissing Eli's cheeks, I was being silly and he smiled.  He SMILED!  It was his first smile since all that had happened and it was incredibly precious.  As I was driving from Indy, I kept thinking about that smile and how it was just as special as his very first smile.  That's when it dawned on me.  Parents are always excited about their child's first smile, first laugh, first steps, and first anything really.  We had all those "first" experiences with Eli and now we were getting to experience them again.  That was the attitude I had to have to encourage Eli through all the pain and frustration he would encounter over the next few months.

Eli spent the next six weeks at Peyton Manning Children's Hospital.  Monday through Friday he had therapy for close to six hours a day.  On the weekend he had about two to three hours each day with therapists plus whatever we could do with him outside of therapy times.  Despite the visiting restrictions because of the flu, he had many visitors from within the hospital.  Even after he was released from his surgeon, Dr. Abraham stopped by about once a week to see how Eli was doing.  Infectious Disease Nurse Practitioner Angie was there almost daily even if the doctor was rounding on Eli that day.  PICU nurses came to see him.  The cafeteria delivery staff (usually women) would go out of their way to come past Eli's room or the therapy gym to see what advances he was making.  Student nurses who had Eli in previous weeks would come see him when they had a free moment from their current patients.  Eli became a fixture in the hallways.  If he wasn't in the therapy gym he wanted to be out and about.  I walked miles and miles around the nurses station, sometimes carrying him, sometimes pushing him in his wheelchair, and eventually he would occasionally walk around the hallways holding tightly to my hand with his right hand.  And because we were there so long, we were able to make some lasting friendships with other patients and their families.  Our two favorites this time around are Maddy and baby Katie.  Both had tough battles.  Maddy has completed chemo and will be starting college in the fall.  This super woman took (and aced!) several college courses while undergoing strong chemotherapy and melting Eli's heart.  Baby Katie fought bravely for a long time and has earned her angel wings.  That's a story I want to share another time because it is one of the most beautiful stories I've ever heard.  Meeting these families and sharing our journeys really helped us. 

Eli was then transferred to Evansville.  I knew St. Mary's was a good hospital, but I was really worried about making the transition.  Mostly for Eli's sake, but selfishly a little for myself.  Immediately we were made to feel at home.  Eli spent just over two more weeks there where he continued to flourish at a rapid pace.  The therapists, nurses, doctors, techs, and other staff were in love with him as well.  I think we'll always consider PMCH our "home" hospital because they have literally seen us through every up and down, but St. Mary's definitely earned their way into our hearts. 

On March 21, exactly three months after Eli's surgery and strokes, we came home.  We were sooo excited and sooo scared!  Eli had major improvements but he still required a lot of care.  He basically needed an adult within arm's reach at all times for the next several weeks.  We continued working with him on our own and he started therapy through our local hospital.  They came to the house and Eli warmed up to them pretty well.  They therapists we had definitely helped make the transition from hospital to home easier for us.  Because of policy change within the hospital we had to switch therapy providers.  Now we use an agency from out of town.  Again I was worried about changing therapists on Eli, but he has adapted well and tries to ignore them as much as he's tried to ignore all the other therapists he's had!

Eli has worked hard.  It's been a struggle for all of us.  We have a lot more to do but we are incredibly proud of where he is now.  The work he has left is a lot of small, detail things that aren't as celebratory as his second first smile or set of first steps, but they are just as important if not more so.  He has to work at straightening out his index finger and thumb on the left hand.  He has to work at grasping things with the left hand.  He has to work on muscle control in the left hand and arm. Countless more hours will be spent doing those things.  Will he get full control back?  We don't know.  He may not.  Early on one of his therapists said usually the most change we see after a stroke happens in the first six months.  I've had that in my head for a long time, as if the condition he's in tomorrow will be it and he won't have anymore advances.  I know that's not true.  I think he will continue to improve.  "Lefty" may or may not recover fully, but we will keep working. 

Eli also struggles with his emotions.  He's very stubborn and cries or screams a lot if things don't go his way.  Some of that could be from the strokes.  Some could be side effects from some of his medicines.  It could be signs of post traumatic stress from all the time he's spent in the hospital versus being a toddler at home.  It could be he's a normal three year old who is pushing our buttons and testing his limits.  Or it could be a combination of all those things.  He used to have night terrors but those have been few and far between for the last several weeks.  Other issues we have to deal with are that he still needs to drink more fluids during the day, we'd like him to eat more so we can decrease or eliminate the nighttime tube feedings, we don't know (and won't know for a few years) how much his vision is affected, as well as a few other things.  He is a lot of work but he is worth every bit of it. 

Thank you to anyone who has had any role in Eli's recovery.  From the dedicated medical professionals to social workers to friends and family and coworkers, thank you for everything.  We also want to express how grateful we are that Zachary is the kid he is.  Zachary is the best brother any kid could have.  He loves working with Eli's therapists during sessions.  He is so gentle with Eli and encourages him to use "Lefty" while they're playing, snacking, using the iPad, and lots of other times.  Zachary is a great role model for Eli and a huge help to us at home.  We really try to let him know how great he is, but I don't think he'll ever realize how much Eli adores him.  We're very lucky to have the family and friends we do who took care of Zachary while we had to be in Indy with Eli.  We're also very grateful for his kindergarten teacher who stayed very informed of what was happening with Eli and would offer extra support to Zachary when he needed it.  Our support system has been vital to us and we are thankful for all of you. 

Since Eli's surgery last April, our life has been filled with one struggle after another.  To get through it at the time, you just do what you have to do.  Now I'm starting to realize how much we've endured and I am starting to feel the effects of the last 14 months.  I am incredibly proud of our family.  We are not perfect but a lot of couples wouldn't have made it through times like this.  We joke that we're just too lazy to get a divorce, but in all honesty, that's never been an option.  We're stuck together even if we don't like it all the time!  And God definitely knew what He was doing when He gave us Zachary and Eli.  I really feel like no other four people fit together as well as we do. 

Thank you for all the prayers.  I am asking that you keep them coming because we know they're working!  God bless you for keeping up with our crazy life and remember to cherish Every Little Beat...