Wednesday, December 31, 2014

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 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. 

Wednesday, December 10, 2014

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!

Tuesday, December 9, 2014

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!