CHD Awareness Week Petition

As you probably know, spreading awareness about Congenital Heart Defects is a passion for our family.  In all honesty, we didn't know much about them before Eli's diagnosis, so please don't feel guilty if you're the same way.  However, we now know so much and realize how important it is for the general public to know more about CHDs as well.  As the knowledge base grows, more people are more passionate about finding causes and cures, and that leads to more research, more treatment options, and a better life for these kiddos and their families. 

I don't have time right now to get into a lot of facts and figures, but CHDs affect many more people than I ever imagined.  It kills more children every year than all forms of childhood cancer do.  We all know how awful cancer is, CHDs are taking away more of our children than that nasty disease.  And those living with CHDs don't go into remission, they live with it every single day, every single minute, every single breath and heartbeat of their lives. 

Please help us out by clicking HERE to sign a petition.  The purpose of this petition to make Congenital Heart Defect Awareness Week recognized nationally from February 7-14 each year.  Right now, it's up to a few heart organizations, families, and individuals to promote the week.  It's never been anything official, but these kids and babies suffering from CHDs deserve to have a nationally recognized week.  To sign the petition, you simply go to the link provided above, enter your name, email address, and zip code.  To confirm you want to sign it, an email will be sent to you which you open and confirm.  It's easy and it means a lot to us.  Once you sign it, you also have the option of sharing it on your Facebook or Twitter account.  Please consider doing that as well, we are far from the required amount of signatures to make this happen.  Thank you for taking the time to do this!!!

News from our Fetal Echo and Eli's ENT Appointment

It's been a long, busy two days and I am worn out!  So glad to be back home tonight.  I'm pretty tired, but this baby is practicing gymnastics right now and that prevents me from sleeping so here's a rundown of our news from Tuesday and Wednesday's appointments.

Tuesday was our fetal echo and other scanning to check for any physical defects with our unborn baby.  Bryan and I went alone to this for a couple reasons.  First of all, we didn't know how long it would take (we'd been told to expect 2 hours or more for the scans) as it mainly depended on how much the baby moved around.  Secondly, not that we were thinking negatively, but in case we did have some news to process we didn't want one or both boys around as we worked through that.  After we checked in I had my initial ultrasound by a tech.  We had told her we didn't know the gender and were trying to keep it that way.  We watched the majority of the ultrasound she did but she had us look away at one point so she could check the genitals.  Her ultrasound revealed two arms, two legs, two kidneys, and other things that I had made up in my mind would be missing.  She tried to get us a good 3D4D picture of the baby's face, but the little squirt had its legs up over its head.  So we got a picture of that but the facial features weren't very clear.  That really didn't bother us because although it would have been nice to see more detail of the face, that wasn't our purpose for getting specialty ultrasounds nearly three hours from home!  The picture with the baby's legs over his/her head was pretty unique.  We did get a clear view of the baby yawning and the tech even rewound that for us to watch again.  It was cute enough to make any heart melt! 

After the tech was done, the pediatric cardiologist came in.  Her name was Dr. Tucker and we had not met her.  She just started with Eli's Indy cardio group in July so it was nice to meet her.  She spent a long time scanning the baby's heart and making friendly small talk.  At the end of her exam she said that as far as she could tell our baby has a healthy heart.  Because we're looking at a small heart in a small body within a larger body it's impossible to see every little detail, so she cannot rule out any small VSDs (ventricular septal defects which are holes in the wall separating the two lower heart chambers).  She has no reason to think there are any, but just cautioned us that is something she can't rule out.  Also, I won't go into specific details because it's very confusing, but a fetus has a different blood flow from a baby outside the womb.  That's because a fetus isn't breathing on its own so its blood doesn't need to go to the lungs.  After a baby is born there is a hole that closes up usually within the first couple weeks of life.  Occasionally it doesn't close on its own and requires medical intervention.  So that is something she can't predict right now.  Either of these things that she mentioned (VSD, hole that doesn't close) are not things she's concerned about.  She was just mentioning those to caution us that she can't say our baby is 100% heart healthy.  That's not just our baby, that's any fetal echo she does.  Dr. Tucker said she sees no reason to be concerned, she does not need to see us for any further exams while pregnant or even after the baby's born.  I specifically asked if we need to do an echocardiogram once the baby's born.  She said only if the baby's physician hears a murmur or if the baby doesn't pass its state mandated pulse oximetry reading (Cora's Law!) or if we have some other concern that develops.  Basically we couldn't have gotten better news about the baby's heart!

After the cardiology part was done, we were waiting for the maternal fetal doctor to come talk to us about the ultrasound results from the scans the tech had done at the start of the appointment.  While we were waiting, another tech came in and said she had a favor to ask of us.  The facility was interviewing a potential new employee and they wanted to know if we'd let her perform another ultrasound on me as part of her interview.  Say no or watch our baby move around a little more?  We agreed.  She said the doctor would come talk first then she would come back in with the girl they were interviewing.  The doctor came in and immediately said, "We're getting a better picture of that face."  By that time, the kid had squirmed around enough that its legs were no longer over its head and he could get clearer views of the baby's facial features.  In all honesty I never cared for the 3D4D pictures until I saw our baby's photo session!  We were able to see more features of his/her face.  Cute little baby lips (like big brother Zachary?), cheeks that are round (like big brother Eli's?).  Oh, so sweet!  The doctor spent a fair amount of time getting us some photos of the baby's face and he said it's because he really had nothing to discuss with us since everything looked good as far as he could tell.  Again, good news! 

Then the other tech and her interview prospect came in.  They were really focusing on getting good pictures of baby's brain, femur, and the insertion site of the umbilical cord into the placenta.  Again, none of that was because of concerns with our baby, they were using the baby to "test" the girl interviewing.  The doctor came back in to watch her and through all of it we just got to relax and enjoy more views of our squirmy little baby.  When we left after nearly two hours in the exam room, we were leaving with the knowledge that as much as they can tell from all the testing they did, there are no concerns.  And baby weighed in at 1 lb 11oz, almost half a pound more than the average 24 week fetus...determined by my non-medical late-night online Googling abilities!  As I said in my last post, I couldn't bring myself to pray for a healthy baby.  All I could do was pray that we could accept whatever news we got.  I still can't believe things are good so far.  It's a relief but it's also still going to be in the back of my mind.  Even after delivery I may not believe it for a long time!  No matter what, we know this is the baby meant for us, just as Zachary and Eli were meant for us. 

Here are a few of the photos we got from the ultrasound sessions.




This is a good profile pic of the baby.  This was at the very beginning of the ultrasound.  Notice the genitals are just out of the frame, she did that on purpose for us.  And, no, we didn't find out the baby's gender today either!

 

This is the picture we got with the baby's feet up over its head which prevented us from getting a good look at the face.  I love this though because even though it isn't clear, we can easily see its legs stretched up and the foot above its head.  Cute!

And here is the best photo we could get of the baby's face.  It was clearer on the screen, getting a photograph of it isn't as clear.  But it does show the lips, cheeks, chin, and nose very well.  I definitely see a little bit of both my boys in this picture.  The baby is saluting us over his/her right eye!

On Wednesday, Eli and I went to his ENT appointment.  As we walked into the building we ran into one of our favorite nurses, Britini.  She was the very first nurse Eli had at PMCH when he was flown there after his diagnosis in Evansville.  Over the years and admissions, we've had her many times and are always happy to see her.  Eli doesn't usually recognize her because she's a PICU nurse and those are usually his sickest and most sedated times.  It was good to spend a few minutes catching up with her.  Then we made our way to Eli's appointment with Dr. Hamaker (pronounced "Hay-maker").  Both Dr. Hamaker and her nurse practitioner were very nice and we were comfortable with them.  Eli doesn't have any active ear infection going on right now...actually this past week has been the healthiest he's been since August!  No runny nose, cough, or ear issues.  I'm really glad he's feeling better, but doesn't it just figure that he's doing so well when we actually see the specialist?!?!  Even though his ears aren't infected, both of them saw fluid behind his right ear.  With the issues he's had over the past several months combined with his history of pretty serious infection and several ear infections over the years, Dr. Hamaker is recommending tubes in his ears.  However, because of his snoring (the kid is loud!) and some other issues, she wants him to first have a sleep study to confirm/rule out obstructive airway issues.  Just in case he needs something else done he would only have anesthesia once for both things.  What besides tubes would they do?  Honestly, I didn't ask.  I am assuming it would be tonsil and adenoid removal but like I said I didn't ask.  It's difficult to get all the right questions out at the right time when there's only one of us in an appointment with Eli.  He's a pretty good kid, but he is, well we could say demanding.  He's had so many appointments in his short lifetime that he is way too comfortable and yet he is thoroughly annoyed by them at the same time.  Lately, he does well with the actual exam but then is ready to go.  He doesn't want any talking between mommy & the doctor, he just wants out.  That's not a big deal for a regular check up but today it was problematic because there was a lot to discuss.  So, no, I don't always get the right questions out as I'm trying to focus on the doctor and on occupying Eli.  Frankly, I'm not concerned about because I know we'll have another chance to find out before anything is actually done. 

So, the plan with Eli is to get the sleep study, have tubes placed in his ears (and possibly another procedure with that if determined necessary by the sleep study), and then get a hearing test.  We know he has a slight degree of hearing loss or impairment simply because there's fluid present.  How much?  We don't know.  We could do a hearing test now to assess that, but whether we do it now or after the tubes, he still needs tubes so let's just do it after and assess where to go from there.  There is a possibility he could have some hearing loss due to his strokes, but she doesn't think that's the most likely reason.  The main culprit on our list right now is the fluid.  Also when he has tubes placed, Infectious Disease wants the fluid cultured to see what may be growing in it.  They feel that with Eli's history, there's a strong possibility it could be another "fun" bacteria we need to deal with.  For now, we wait for a call about scheduling his sleep study and we start there!

As we left Eli's appointment he looked at me and said "Now we go see my doctors and nurses."  It was clear he knew we were at PMCH and that we should visit the third floor.  I actually didn't plan on it since it was about 4:30 and I wanted to grab food and head home, but it was obvious I had lost any say-so in the matter.  We headed through the tunnels and hallways we know too well and made our way to the children's hospital.  On our way we ran into Melissa who was one of Eli's physical therapists at St. Mary's in Evansville.  She now works for St. Vincent and we just happened to catch her as she was heading to the employee gym!  What timing!  Then we got up to the third floor and had a short visit with some staff there.  It seems to always work out that many of our favorites are working when we visit.  Or maybe we have just been there too long and have too many favorites!  Oh well, they're all great and love seeing Eli.  As we walked in I told him he could not go to the playroom because it was for the sick kids.  He immediately told me he was sick.  When the nurses at the station saw it was him and began to greet him, one asked "How are you?"  I don't think she heard his answer of "I'm sick" because it was only meant as a key to the playroom.  It didn't work and he had to show off in other ways.  During our visit we even got to see Dr. Steinberg who is the cardiologist in charge of Eli's pacemaker (no, Eli doesn't have one now, but he did and likely will again).  When we left the floor he wanted to see his fountains (we used to spend a lot of time at the two hospital fountains after his strokes because they were off unit and provided some therapy as he threw coins in them).  They were on our way to our parking area so we saw both fountains and also ran into one of his dieticians.  We hadn't seen her in months and he was in full show off mode by then.  I had a hard time stopping him though because I wanted him to burn that energy off before I strapped him in the van for the long trip home!

After the visit we went through Hardee's drive through (those were my orders and at that point I didn't care what we ate).  We made it to the south side of Indy before Eli started asking/crying to be home with Daddy and Zachary.  He does great on these trips, but once he knows we're headed home he wants to be there yesterday.  So for the next two hours he intermittently cried, yelled, laughed at his movie, sang the Star Spangled Banner and Take Me Out to the Ballgame (seriously, two of his favorite songs and he knows a lot of the words to our national anthem), and refused to eat the burger he demanded from Hardee's.  He repeatedly said he'd eat it when we got home.  We got home and Bryan brought him inside.  They sat down with his burger and, as promised, he ate the whole thing!

I'll let you know when his sleep study is going to be and what comes after that.  I'm not even sure how soon the sleep study will happen since it isn't scheduled by the office we were in.  They'll refer him to that department which will be the one to set it up.  Thank you for your prayers and support.  We know we are lucky to have so many people pulling for us. 

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!