Thursday, August 4, 2016

2016-2017 School Year Begins

It's been a long time since I've posted here.  I often think about it as different events occur, but I have opted to spend time with my family rather than at the computer.  But today is different.  Today I must inform you of the latest news in our family. 

Today is Eli's first day of kindergarten!  That's right, Eli is in kindergarten and Zachary started third grade!  Our babies are growing so quickly!

Getting him ready for kindergarten has been a long time in the making.  He had two years of preschool (both years were at developmental preschool and one year was also at a regular preschool).  Through the summer he attended weekly tutoring sessions just to get some extra help with his letters, phonics, and other aspects.  He is still in outpatient therapy and a lot of the therapy has been geared toward kindergarten prep such as cutting, walking stairs, managing his backpack and lunch box well, and playing safely on the playground equipment.  Eli will continue to have PT and OT through school services and we've opted to also continue his outpatient therapy (pending insurance approval) for the time being.  Back in April we had a meeting with several members at his school about him and what needs we could anticipate him requiring before starting kindergarten.  We've planned and prepped as much as we can, now we are at the point that we see how it goes and adjust accordingly.  The most important thing is that Eli is in an environment that we are comfortable with and with people who are very welcoming to him.  The boys love the fact they are in the same school now.  Last night at Open House we found out the 3rd grade and kindergarten recess times overlap, so they'll get to see each other some in the middle of the day!

We wondered if Eli would be upset when it came time to actually leave him at school.  The first couple days, parents are allowed to walk them into the classroom so that's what I did.  After a hug and a kiss he got settled at his table.  I snapped a picture or two (didn't ask him to look at me because things were going well and I wasn't going to chance making him mad!!!), then I left.  He waved bye to me, but was fine!  Once I got to the van I had a few tears.  Not a bunch, but just tears of thankfulness for many things.  Mainly for the fact that he has overcome so much and worked so hard to get to this point.  Also because of the willingness of so many areas of the school staff to be excited for him to be there and work so hard to do what is best for him.  Thankful for the boys being together and for me to have this one on one time with Charlotte.  There are many more things I'm thankful for about this, but those cover the major points!

Enough sappiness (for now!).  Here are some photos of the boys as they start the 2016-2017 school year! 

Eli working with Ms Brooke (one of his therapists) on the school playground this summer.  We were trying to get him used to the playground equipment before it was full of other kids trying to play as well!

Working hard on this curved ladder!

Almost there, Eli!  He worked really hard that morning and we learned a lot about what he was and wasn't comfortable with.

Making his way across the suspended bridge.

Zachary with his third grade teacher, Mrs. Wadsworth.  The glasses on top of her head make her taller than him for now!  Eli had to get in on this picture, but wouldn't let me take one of him with his teacher!

Some major attitude coming out of this one the night of Open House.  I had to plead, bribe, and threaten for this picture.

Our third grader!  He's getting so grown up!

He's a little more photogenic this morning!

Goodbyes for baby sister before the first day.

At his table checking out his classmates.  I didn't dare ask him to look at me or smile!

💚💙  Be still my heart  💙💚
I pray they're always close and look out for each other. 
To reduce traffic congestion, the school has staggered release times for car riders and walkers.  Kindergarteners are let out first, then groups of siblings, and lastly the rest of the car riders and walkers.  For a couple days, Eli will be leaving just a few minutes before the other kindergarteners so he can get accustomed to the hallways and routine before having to navigate it with the other kids around him.  Today, Zachary was released with Eli and I got this precious picture of them coming out together.  Zachary was using Eli's lunchbox to shade him from the intense sun.  Such an amazing big brother!

The first day was a success!  Neither boy had any disciplinary reports in their folders, no blood was shed, and they both plan on going back tomorrow....I don't think it's fair to ask for much more on the first day!!!

Everyone, please keep all students, teachers, administrators, and school staff in your prayers as this 2016-2017 year begins.  There are so many negative things in the world these days and school should be a safe, fun, productive place for everyone.


~~~~~~  The days are long, but the years are short  ~~~~~~

Tuesday, January 5, 2016

Five Years...and Counting!

Five years ago today, Eli was ten weeks old.  Exactly ten weeks old.  We took him to the doctor for his 2 month check up.  We had a few other questions in addition to his routine check up.  He'd been vomiting a lot.  No, it wasn't spit up.  He was vomiting.  There was no rhyme or reason to it.  He might vomit a few minutes after a feeding, hours after a feeding, during a feeding, or he might go days without doing it.  He didn't seem to be gaining much weight.  Also, he was sleeping more.  But when that beautiful, brown eyed baby was awake, he was so alert!  He followed us around with those eyes, he knew who we were, he knew his big brother, and he was smiling at us a lot.  He had wet diapers, he had poopy diapers, he took a pacifier, and he nursed well with the exception of the two days before the appointment.  So we weren't overly worried...but we were still worried.

Five years ago today, I took him for a check up.  There, we found out not only was he not gaining weight anymore, but he had lost weight!  He was 8lbs 12oz at birth.  We know he got up to about 9 1/2lbs.  Five years ago today he was 8lbs 5oz.  He weighed less than he did at birth.  Later that day, he was admitted to our local hospital.  Later that night, after a chest x-ray showed his enlarged heart, he was transferred by ambulance to St. Mary's in Evansville.  A few hours into the next morning (really the middle of the night), we had a pediatric cardiologist standing in front of us drawing pictures of a normal heart and pictures of Eli's heart.  Those pictures were so different from each other it was terrifying.  (Yes, I still have those drawings!). Even more terrifying than her pictures were some of her words, such as  "open heart surgery" and "survival rates".  Less than 24 hours after our appointment Dr. Amy's office, Eli was baptized and loaded into a helicopter to be transported to Indianapolis.  Bryan & I drove home.  We had to pack and make arrangements for Zachary before we headed to Indy.

Once in Indy, we were given more information.  A lot of information.  Information we didn't want but had to face.  Surgery was inevitable, but his case was very complicated.  They had never seen or heard of a ten week old baby just receiving a diagnosis like his.  (Not 100%, but I'm not sure they have since then either).  Doctors needed to confer and determine which surgery would benefit Eli the most.  Surgery was set for January 10.  In the meantime, we waited.  We held him, we kissed him, and we watched him.  Basically, we watched him deteriorate.  He was dying.  In the few days between his diagnosis and surgery, we saw his energy level plummet.  He was being tube fed because it took too much energy for him to eat.  He was on multiple medications that were slowly increased as his heart function decreased.  We told him goodbye, not because we thought he would die, but because we knew there was a chance (a one in three chance) that he wouldn't come out of the OR.  So, yes, we had to tell him goodbye, just in case that happened.  As we did that, every fiber of our being was pleading and begging with God to let him live. 

I won't go into more details of the next five years because most of you have been following us that long.  Let's just say he made it out of that OR.  And through three more heart surgeries.  And battled a staph infection for over a year.  And has had a tough road to recovery from massive strokes.  And has been in multiple therapies for well over half his life just to keep up with developmental milestones and stroke rehab.  And has had many, many echocardiograms, heart catheterizations, blood draws, doctor appointments, and countless other procedures and tests.

But he's alive.  And just this morning, on the fifth anniversary of the appointment that began this journey for us, he got dressed almost completely by himself.  He's been pretty consistent doing his pants, socks, and underwear (YES!  He's fully potty trained now!!!).  Shirts are harder for him because of the limited range of motion of his left hand and arm, but today he took initiative.  He asked for help getting his pjs off his right arm, but then he removed his shirt alone (he has done that before).  Then, this is the exciting part, he put on a long sleeve shirt BY HIMSELF!  It took a while and he asked a few times for help.  I showed him how to do it, but then started him back at the point he was at before asking.  After several attempts, HE DID IT!  Let me tell you, once this kid decides to do something, he can accomplish anything. 

So, for those of you who think you're having a bad day, suck it up.  No, I don't mean all the time.  Everyone is allowed a complaint now and then.  But, overall, get some perspective and suck it up.  If that five year old can go through the hells he's been through and still smile, tell jokes that make no sense, and laugh, then I promise you'll get through your bad day.  (That little speech is directed at myself too.  None of us are exempt from feeling sorry for ourselves, but we all need to learn to handle it better.)

The following are a few pictures from the night before Eli's first surgery. 


Zachary was 3 years old and didn't really understand what was going on.  We told him he didn't have to, but he could kiss Eli bye before he left.  Zachary immediately wanted in bed beside him and snuggled his baby brother.  The tubes and wires didn't phase him a bit.


We were so afraid this was our last family photo.  Bryan and I don't look the greatest here, but we had both our boys with us and nothing else really mattered.

The last picture we had of him before he was taken to the OR.  Obviously neither of us had any sleep the night before but we needed to take as many photos as possible and give him one more kiss again and again and again.



This was just hours after the surgery he wasn't supposed to survive.  I realize it's very hard to look at him with all these machines, wires, IVs, and monitors, but please understand how exciting it was for us to see all that.  If he didn't make it, none of that would be there.  Each thing was an important piece to his well-being.  And honestly, we didn't even notice most of it, we just saw our perfect baby boy with a beating heart!


And this is the boy wonder who wouldn't pose for a picture today.  He's the most stubborn, head strong, and determined to get his own way boy I've ever met.  And I'm so thankful for those qualities because those (along with all his good ones!) have made him the fighter that he is!


As always, thank you for reading.  We are grateful to have your support on this journey.  Please continue to keep us in your prayers.  Who knows what the next five years will bring.  Heck, some days, it's hard to make it five minutes at a time!  Thank you and remember to cherish Every Little Beat...

Thursday, December 31, 2015

Happy Holidays? Not All the Time

The holidays are a tough time for many people.  I'm becoming one of those people,  but not necessarily for the same reasons as many others.  The holidays are supposed to be about families spending time together, being thankful for our many blessings, and for celebrating.  Well, I do all those things and I do them joyously, but in the back of my mind I am remembering our holiday season five years ago.  You see, Eli was born in late October 2010.  We had a wonderful Thanksgiving together.  Our first Christmas as a family of four was so much fun!  Christmas with a baby is always special.  We rang in the new year with dear friends and were excited to start 2011.

Five days into the new year, Eli was diagnosed.  Our lives were forever changed.  Please don't get me wrong, I am and forever will be grateful that I can say he was diagnosed and not have to say he died. It's truly a miracle (not a phrase I have ever used lightly) that he lived as long as he did before finding out something was wrong.

However, I cannot look back at any pictures from the holiday season of 2010 without feeling some sadness.  I see his sweet little face with those beautiful dark brown eyes and chubby cheeks and I search.  I search for a bluish tint to his lips or fingers.  I search for signs of not growing appropriately.  I search for a listless, sleepy baby who was, unknown to us, fighting for his life.

It's not that I think I personally missed something or am looking to place blame on anyone else.  I just have a lot of conflicting feelings about that time.   Mostly I just remember how carefree we were.  Yes, we had two young children so that came with a lot of stress & worries, but they weren't life or death worries.  Looking at those pictures I remember being thankful for my little family, but these days I feel like I have even more insight about what it means to be thankful.  Every day is a gift.  Every hour, every breath, every single thing said or done, is a gift.  In those pictures, I see the innocence we once had.  The baby in my arms had a body without scars.  He was unblemished and perfect.  But looks can be deceiving.  He was fighting a fight none of us knew about.  Fortunately for us, he is stronger than we could ever imagine.  Fortunately for us, we were able to figure it out before it was too late.  Fortunately for us, we had access to the proper treatment so we could help him fight.

I wish Eli didn't have to fight so hard.  He's had to fight for so many things, and had to fight for many of them multiple times.  Nearly every child learns to walk, talk, & eat, but not every child has to learn to do so twice in their lifetime.  Both times were with the help of talented, caring therapists.  I vividly remember his first steps...both times.  Both first smiles brought tears to my eyes.  Seeing him struggle with simple tasks that so many of us take for granted was and is very hard.  As a parent I want to make things easy for him, but that's not what's going to help him the most.  He has to work through those struggles and really learn from them.  It's very difficult to sit in a surgical waiting room while our little boy is having his chest cracked open.  But it's almost just as difficult to properly help him recover from his strokes.  These are not the things taught in parenting classes.  They're not taught in nursing school and they're not taught when your little one is diagnosed with such awful things.  Live, learn, and pray for guidance.

So, the holidays bring a lot of conflicting emotions out for me.  I'm grateful for the time we had before he was diagnosed.  Ignorance is bliss?  But in hindsight I see how lucky we were.  I probably sound like a broken record, but it's amazing that he lived through those weeks.  Just how precious each of those moments were screams out at me in those pictures.

Today (December 30, 2015) marks another anniversary for Eli.  Two years ago today we were in Dr. Amy's office for an urgent visit.  Eli had woken up vomiting on Christmas Day 2013.  When he finally started walking that day we noticed he was limping. It got worse and we even went to the ER for xrays.  Nothing showed up so we thought it was possibly a hairline fracture and we watched him for another couple days.  The morning of the 30th he was running a fever.  By then, Bryan & I both knew it probably was more than a simple hairline fracture.  Once at Dr. Amy's, we had plans to get labs, blood cultures,  and other x-rays.  Also, an appointment with a pediatric orthopedic doctor was made.  It was in Indy and we had less than three hours to pack and get up there.  Eli & I took off and made it.  On the way I was calling Eli's other specialists and leaving messages updating them on his condition.  By the time the ortho doctor examined him, Eli was feeling pretty bad and looking like a very sick little boy.  He was admitted to Peyton Manning Children's Hospital that day.  He didn't leave there until March 6, 2014.  His staph infection was back and we had no choice but to send him to the OR again.  If you've followed his story at all, you know the rest.  Fourth open heart surgery, strokes, intensive inpatient rehab.  Once he left PMCH in early March, it was a transfer to St. Mary's in Evansville for more inpatient therapy.  On the 21st of March, exactly two months after his strokes, he WALKED out of the hospital.  He came home with a wheelchair, a walker, swallowing restrictions, countless stretches & exercises, and a whole lot of work ahead of him, but he was home.

So just another date that I don't try to remember, but it won't leave my head.  And just another memory tied to the holidays that leads to unpleasant thoughts and memories.  It's been a little harder this year because just yesterday was my grandmother's funeral.  At times during the service, Eli was on my lap.  It was his first funeral and he kept whispering questions to me.  "Where is Grandma Great?"  "She's not hurting anymore?"  "Her soul is in heaven with God now and her body is in there?"  Of course we'd talked before then, but naturally he still had questions.  As I held him and sat there, I was very emotional.  Toward the end, he looked up at me and whispered "I love you."  I was already crying and suddenly all I could do was hold on to him and pray.  I was praying thanks that I had him with me, praying that I would not be attending his funeral, and praying for strength to get through whatever is next on our journey.

So, now that I've shared all those yucky little thoughts, let me assure you I don't dwell on them.  I don't think about them all the time.   I enjoy the holidays with our family of five and our extended family & friends.  The good times and good memories heavily outweigh the bad ones.  We have to have those bad times to truly appreciate the good ones.  And now, at this late hour, I'm off to snuggle and feed one of my greatest blessings in life.  She's fussy because she's going through a tough time too....teething.  My other three blessings are snoozing together on the couch after watching a movie.  See how rough we have it???  ;)

I hope you all had a very Merry Christmas and that 2016 brings you health and happiness!    I will make a New Year's resolution to be more consistent updating this blog!  Do you make resolutions?  If so, what are you working on this year?

Tuesday, June 23, 2015

Two Months!

Charlotte is two months old already!  Well, yesterday she was two months old, today she's two months and one day :)

This sweet little gal is very cuddly, loves bright lights, and is giving lots of smiles.  She's been testing her soft little voice  sometimes with darling little coos and ahhs.  She recognizes her big brothers, is a good nurser, and is pretty happy most of the time.  But she does have a quick temper and can be very loud!  She prefers a shower over a bath in her baby tub and hates to be in a wet/dirty diaper (not that I blame her!).  She still wants held a lot at night, but lately has been sleeping about 4 solid hours so Mommy is beginning to get a little more rest.  She weighs about 10 1/2lbs and still has blue eyes.  She's outgrown all her newborn sizes and is in 0-3 or 3 month clothes.  No matter what size she is, she's a perfect fit for us!



The mandatory 2 Month sticker photo. 

This bear was made by the four of us at Build A Bear while I was pregnant with her.  Bryan and I started
the tradition of making a bear for our unborn baby when I was pregnant with Zachary. 
Zachary's bear is Giggles, Eli's is Happy, and Charlotte's is Laffy. 

 

We always have to be a little different.  So instead of being like everyone else doing the monthly stickers, we got the boys in on the action too!  My original idea was to have one with the three of them and their stickers...but posing three kids for one photo is not easy and the individual pictures turned out just fine!
 


 

Friday, June 19, 2015

Sleep Study Number Two

Asking for prayers again.  Eli had a sleep study last night.  It's being done because we need to find out if removing his tonsils and adenoids improved his quality of sleep.  We think it did because he's not snoring anymore, but that isn't enough information for us to go on!  His sleep study prior to the T & A showed many recurrent episodes of sleep apnea where his oxygen saturations would drop into the mid 70s.  Oxygen sats that low put a lot of stress on the heart and lungs.  His heart and lungs are already stressed because of his heart defects so we want to minimize or eliminate any additional stressors we can!  If this sleep study hasn't improved from the last one, our next option is likely a cpap machine for him to wear when sleeping.  Of course we'll do whatever is required, but we really, really don't want him to have to have cpap!  It was a chore getting him to wear oxygen tubing at night when he required oxygen, I can't imagine getting him to strap a mask over his mouth and nose every night!

Please pray that his sleep study has improved.  We'll probably have the results later next week. 

Bryan took him for this one and I stayed home with Zachary & Charlotte.  Here are some pictures he sent after Eli was hooked up and ready for bed.
 
 
 


 
 
 
It all looks very comfy, doesn't it?  Bryan said Eli woke twice in the night but easily went back to sleep when Bryan snuggled him.  They were woken at 5:45am to disconnect and go home. 
 
 
Here are a couple funny stories from yesterday:
 
1)  The boys were playing in the playroom and it was nearly time for Bryan & Eli to leave.  I told the boys to pick up.  Eli puts a few things away then sprawls out on the floor saying "I can't do dis anymore.  I'm tired.  Too tired for mine sweep study."  Too tired for his sleep study?  Funny boy!
 
 
2)  Zachary, Charlotte, & I went to Evansville for supper and a little shopping.  We stopped in Petersburg for gas and on the way out I told Zachary Hwy 57 is the way we went to Evansville all the time before I69.  Here's that conversation:
 
Z: This is how you went when you were a kid?
Me: Yes, as a kid and a grown up.
Z:  Wow.  Some of these buildings look really old.  Like they were built in 1981.
 
Following that we had a brief discussion about time perspective!
 
 
3)  And a Charlotte update.  She was 8 weeks old on Wednesday and she'll be 2 months old Monday.  (I really don't like how quickly time is going by!)  As I carried her through the store someone asked me how old she was.  As I had those two numbers in my head I promptly replied "8 months"  Then I had to correct myself.  She's getting to the point where I don't know if I should reply in weeks or months & I confused myself!
 
 
 
 
 
Thank you for the prayers and for following our family.  I'll update with Eli's results when we get them.  And I'll try to be better about updating with Charlotte pictures.  Life is busy with three kids and I'm making my health and rest more of a priority than I have in the past.  But I will get better about this.  It's not just for you, it's for Zachary, Eli, and Charlotte too!  I would like to do an update on the boys' baseball seasons.  Both have finished and we took lots of pictures throughout.  I was still pregnant when the season began and a lot has happened since then!
 
God bless you all and remember to cherish Every Little Beat...

Monday, April 27, 2015

Baby Veale #3 is here and it's a.......

Her first close up.  She's so pretty!  We think she favors Zachary quite a bit, but definitely see some Eli features in her as well.
 

GIRL!!!!  We welcomed our daughter to the world on Wednesday, April 22 at 10:55pm.  Charlotte Grace weighed a petite 7lbs 11oz and was 20 1/2 inches long.  I'm being serious saying petite because a) I never dreamed I'd have a child that small and b) she's still so curled up she seems like she's only about 15 inches long!

When I announced her arrival on Facebook, I also promised the story of her birth.  I've not meant to drag it out, we've just been busy and tired so I'm finally getting around to it.  It's nothing like Zachary or Eli's labors (which were quite different from each other as well).  So here goes, the story of Charlotte Grace's arrival:

Because my blood pressure had been high for a couple weeks, my OB (Dr. Frances) wanted to induce labor.  He felt it was safe for me and the baby since I would be just over 38 weeks along at the time of induction.  I was admitted to the hospital on Tuesday night to begin a medicine to get my body ready to labor.  The medicine (Cytotec) was to start thinning my cervix overnight so that Pitocin could be started in the morning which would get the contractions started.  When we got to the hospital and the monitors were attached, we found out I was already contracting.  I knew I'd had some contractions, but hadn't felt anything regular.  These contractions were about every 3-6 minutes but they were not strong at all.  My first dose of Cytotec was at 9pm.  I was supposed to have another at 1am, but my contractions were showing up very close together.  I was still only 1 centimeter dilated.  They skipped the second dose of Cytotec in hopes that my contractions would either get stronger on their own or relax and have more time in between.  I was still contracting through the night so Pitocin was started at 4am.  I also got my first dose of penicillin because I had tested positive on my strep test (very common).

Dr. Frances came in about 9am and broke my water.  I was two centimeters at that time and still contracting, although they weren't all that strong.  He hoped that breaking my water would help get the process going more naturally and the contractions would get stronger.  During my two previous labors, breaking my water made a huge difference in how much I felt the contractions and how quickly I progressed so we assumed the same to be true this time. 

Not so much.

We spent the day waiting for progress.  It came, but very slowly.  I rested, I turned from side to side, I walked some in the room, I made many trips to the bathroom, I sat on a medicine ball, I ate jello and drank broth, I watched a lot of tv, I talked with my boys who were both there as well as other family members, I assured anesthesia over and over I didn't need an epidural (truly I didn't yet), and we waited.  My Pitocin was adjusted higher and lower throughout the day as my contractions would get too close together and then fade off some.  Overall my blood pressure was doing very well, but we had started this process and couldn't abandon it now!  By 5pm, eleven hours after the Pitocin begain, I was four centimeters (sigh).  I was starting to feel defeated, but also knew we were getting there.  This was nothing like the labors I'd had with Zachary or Eli.  I was getting very tired by then so I laid in bed for a while in an attempt to rest between the contractions I could feel.  Of course I'd been closely monitored throughout the entire process and when my nurse came in at one point she said, "With the level of Pitocin you're on you should be doubled over in pain, not sleeping!"  I laughed and said I couldn't fake it.  Some changes were made to my Pitocin and the contractions got stronger.  A lot stronger.  And more regular.  I was actually feeling them every 2-3 minutes.  By 7pm I was ready for my epidural.  I was still 4cm but the strength and regularity of contractions in addition to the fact that I'd been laboring for nearly a full day were starting to wear on me.  And I still had 6cm to go and then would get to start "work" by pushing.  Yes, epidural me up so I could rest a little and get ready for the event. 

Dr. Graber came in and got my epidural done pretty quickly.  After that I laid on my side for a while and was able to rest.  No sleep but I did rest.  At 9pm the nurse checked me and I was 4cm.  Seriously, still a lousy FOUR?!?  But she said the baby was lower and I was thinned out so she hoped things would move a little quicker.  By then I was seriously doubting we'd have a baby on the 22nd.  At that point I would be happy with a baby on the 23rd and to not drag it out any longer than that! 

Nurse Erica checked me again at 10pm and even before she said anything I could see relief on her face.  I was six centimeters!  In one hour I'd gone two centimeters.  It had taken 24 hours to get the first four but by golly we were on our way.  Even with the epidural, I could feel some pressure in my abdomen that went along with contractions.  But that's all it was, was pressure.  Definitely no pain.  The nurse came back to check on me a little after 10:30.  I was annoyed initially that she wanted to check me so soon because I was comfy and wanted to rest more.  She said she thought I was getting close based on the baby's heart rate and my contractions.  I didn't argue with her but was thinking a sarcastic "sure I'm close!"  Well, I was wrong and she was right. 

She said, "It's time to start pushing, baby's ready."  She called other nurses into the room and in no time they had my bed changed to a delivery bed, stirrups up, the doctor called, and I was given orders (nicely!) to give my first push.  Then during the second push Erica told me to stop pushing.  Now I had no idea how hard it was to stop pushing in that state, but somehow I followed instructions and stopped.  In a calm but firm voice Erica looked at another nurse and simply said, "Call him again."  Then she looked at me and Bryan and told us the baby was very, very close so we were going to wait until Dr. Frances got there before pushing again.

So we waited.  It was at least thirty seconds if not a full minute of waiting.  Then Erica said, "Baby's not waiting.  Here we go, give me one small push."  So I pushed again and out came our baby!  The umbilical cord was around her neck one time.  Erica announced it was a girl and laid her on my chest.  Bryan and I both thought she was so, so tiny!  As I held our daughter for the first time, Dr. Frances walked in.  It was probably two minutes after her arrival and less than five minutes from the first phone call to him.  I teased him that he was determined not to deliver any of our children (he's been my OB for all three pregnancies but I went into labor with Zachary and Eli on days he wasn't at the hospital so his associate delivered them...I had joked with him in the office that this baby was his last chance to deliver for us!). 

After nearly 26 hours of labor, our daughter couldn't wait four minutes for the doctor to arrive. 

Everything went beautifully and smoothly.  No one was panicked in the room and there were several nurses available.  I did notice that my child chose to make her appearance right at shift change so at least there were several nurses on the unit at that time to help out.  Dr. Frances clamped the cord and Bryan cut it as he had with his sons.  After baby got wiped down a bit and things were ready, Bryan got Zachary and Eli from the waiting room.  We had promised they would be the first to find out if they had a brother or sister and then they got to tell the rest of the family.  The last update our family had from us was that I was six centimeters at 10pm, so when Bryan came out to get the boys, they were a little shocked. 

Zachary and Eli saw their sister, but of course couldn't tell if she was a boy or girl just by looking.  Zachary had wanted a girl very badly and Eli wanted a boy (unless you asked him if he wanted a brother or sister, then his answer was sister...he didn't quite get it!).  So when we told them they had a baby sister, they were ecstatic!  Zachary immediately wanted to run to the waiting room and tell family, but we made him wait a little.  After our first few minutes of us being a family of five, we let Zachary get our family.  He promised not to say anything until they were all in the room with us and he did a wonderful job of not telling!  Once everyone was in the room, Zachary said, "Eli, you tell them."  Then Eli proceeded to say, "It's a baby girl.  I have a baby sister!"  He did it so well, it's like he rehearsed it, but it was just pure joy and happiness.  At that point Zachary couldn't contain himself anymore and began dancing, saying silly things, and just being goofy.  They were both exhausted and excited.  Zachary got to hold her, Eli didn't want to, and then they both got to go home after a long day.  Aunt Kendra said Eli crawled under the baby swing in the living room when they got home and he fell asleep there.  Zachary went to sleep on the couch and neither boy made it to school Thursday morning (Zachary did go after lunch).  But we didn't care.  I'm sorry they were up so late and were so tired, but we needed them there when the event happened and they needed to be there.  Our family deserves to be reminded there are plenty of good things that happen within hospital walls.

Dr. Cullen examined Charlotte on Thursday and declared her healthy.  He asked if we wanted an echo which he would be glad to order simply based on family history.  Because we initially thought Eli was healthy and took him home not knowing how seriously ill he was, we opted to have the echo.  All our prenatal testing had good results, but now she was here and we could get better views of her heart.  So it was done within the hour and read by Dr. Kumbar in Evansville (Eli's Evansville cardiologist).  Everything checked out normal, as we expected but needed to hear. 

Charlotte was overall very quiet and easily consoled although she exhibited a bit of a temper at times.  She spent Thursday sleeping a lot and pooping a lot despite not nursing much.  We came home Friday afternoon and she was still a very sleepy little thing.  However, Friday night she was up a lot and nursing well.  Saturday night went much better and she had a little more awake time through the day Saturday and Sunday.  Tonight (Sunday) she had her first home bath.  We put the baby tub on the kitchen floor and we all got to help hold the squirmy, soapy girl and get her cleaned up.  Even Albert was right there.  She nursed and has been sleeping for a while since then.  As I'm typing, she's starting to stir and will probably (hopefully) wake soon for a feeding and then go back to sleep.  She's been wanting held all night rather than sleep in her bassinet so we may try her bouncy seat through the night tonight.  It will definitely help my sleep if that works out!

Since she's been home, Eli has gotten more and more comfortable with her.  Even in the hospital he was enamored with her, but just didn't want to touch her.  Now he can't walk by without rubbing or kissing her head.  He thinks she should always have her pacifier whether she's awake, asleep, upset, content, or even nursing.  He's fascinated that she doesn't eat food and he's been a big help with choosing the next diaper to use at a diaper change.  Zachary has been a huge helper by being able to hold her for a few minutes so I can have my hands free.  He's also been walking Albert more for us if we get the dog's harness on him (Albert has back problems and can be jumpy when being harnessed so we haven't let Zachary do that part yet).  Albert is his usual helpful self when it comes to our babies.  He loves them and wants to be in their faces all the time.  He is also very wary of visitors and other people getting near his baby.  We've got three good, protective boys for this girl ;)

I want to explain a little about how we chose her name.  We had more trouble buckling down to pick names this time.  With the first two, it was easy to chose their middle names.  We had family names picked out and since both babies turned out to be boys, we used our dads' first names.  We wanted this baby to have a name that meant just as much as Glen and Mark.  But narrowing that down was tough this time since we knew this was our last time.  There weren't family names we loved quite as much and it was hard to choose one side of the family over another.  So we branched out.  What meant a lot to us?  To our family.  Then it was clear.  If this baby was a boy, his middle name would be Vincent after Peyton Manning Children's Hospital at St. Vincent.  Immediately it felt right.  It wasn't necessarily the name itself we loved, but what it meant for us.  It was a way to honor all those individuals who have worked so hard in many different ways to keep Eli with us.  Now the pressure was on.  What if baby was a girl?  What name was as special to us as Vincent?  We couldn't come up with anything feminine that went with Charlotte (which we just happened to agree on).  So, again, we thought about our journey over these last few years.  Not just Eli's health, but also the loss of a pregnancy two years ago.  What's gotten us through all the ups and downs we've endured?  God's grace.  And she became known as Charlotte Grace.  We had also considered Faith, which is why we didn't announce a middle name on Facebook when I posted she had arrived.  After sleeping on it and seeing her again, Grace felt more appropriate to us.  She is another gift to us through His graceful goodness.  So, no, it's not a family name but we put a lot of thought into it and her name is just as special to us as Zachary and Eli's names are. 

Here are some pictures to go with Charlotte's story.

My last belly shot as we headed to the hospital for induction.

Took a photo of my IV, or "tubes" as Eli calls it, to show him he's not the only one who has to have them.

Our last picture as a family of four.

Trying to get some rest after my epidural.



She's here!

All three deliveries, Bryan has taken a picture of the clock in the delivery room when the baby is born.

Holding our daughter for the first time.

Zachary shortly after he found out he had his much anticipated sister!  (I forgot to mention that he lost his top front tooth just minutes after Bryan and I left the house Tuesday night.  The Tooth Fairy waited until we were all home to switch his tooth out for his money.)

Eli checking on his baby sister...from a distance.

Zachary holding his sister for the first time.

Bryan holding his daughter for the first time.
Our family of five.  Eli and I were talking to each other in this photo, but for some reason this was my favorite.


She doesn't look so tiny here, but she is an itty bitty thing...for us anyway!


 
Sleeping through her echo.
She has the longest toes!  Just before I grabbed the camera, she had some of them laced together like she was praying with her feet!
The sign in her hospital crib.

Eli helped me get her dressed for our hospital discharge. 

I love this hat on her!  She's not too sure!

Does this crib make my baby look small???

First bath!  And, yes, it was all hands on deck.  Albert supervised while the rest of us washed her.  Bryan washed her too when he wasn't snapping pictures of us!

Many hands make light work?  Sure.  But this many hands also resulted in a pajama change for Eli too as he soaked himself with all his help.  It was fun....Charlotte wasn't sure, but it was!

The boys love helping with her.

All snuggly, warm, and sleepy after her first home bath.  And we do have pink clothes for her!  We just don't have a lot of newborn sizes yet because our boys were so much bigger...and we expected her to be a lot bigger.  I know 7lbs 11oz isn't actually tiny, but we fully expected a nine pound baby so she has surprised us in many ways already!


And there you go.  That's the story of Charlotte's birth.  She's a sweet little thing who is always up for a snuggle.  She's the best four day old daughter I could have asked for!  Thanks for checking in on us and for any prayers you've offered up during my pregnancy and labor.  As you can see, things have turned out well.  God bless all of you for keeping up with us and remember to cherish Every Little  Beat...

Wednesday, April 8, 2015

A Variety of Updates and Lots of Pictures

I owe lots of updates!  Actually I had to look back on the blog to see what I last posted.  Apologies for it being so long since I've given updates.  I have given short updates on Eli's MVPs Facebook page, but I know not everyone does Facebook.  Here we go:


Pizza Hut Fundraiser
On Friday, February 13 we spent the entire day at Washington's Pizza Hut for Eli's fundraiser.  If a customer had a voucher then Pizza Hut donated 20% of their order to Eli.  The restaurant was pretty busy all day.  Eli had a blast being there and the staff seemed to like having him there this year.  Last year when they did this fundraiser for us, Eli was just a couple weeks out from his strokes and was still hospitalized.  So this was the first time for me and him.  We sold several Eli's MVPs tshirts and bracelets and also auctioned two tickets for the Indiana Pacers vs Charlotte Hornets (featuring Washington's own Cody Zeller).  Those things combined with generous donations from many, many people and a couple businesses totaled about $1000.  A week or two later we got the check from Pizza Hut and it was for over $550.  We had a great time and once again were humbled by the amount of support shown to our family.   A huge thank you to Pizza Hut and to everyone who ordered pizza that day.  We are so grateful.  ALL of that money goes into an account for Eli's future medical expenses, which will be substantial. 

The four of us.  We're all wearing Eli's MVPs shirts except for Eli.  His says "I am a pediatric stroke survivor"


A group photo of some of the workers with Eli.  This was just the ones there at the beginning of the day.  We meant to get one with the evening shift, but they were very busy until the end of the day and by then Eli was too tired to cooperate!

As soon as he got out of school he wanted to come work.  His after school snack was a heart-shaped pepperoni pizza and then he got busy.  Zachary seated people when they came in the door, cleared tables, cleaned tables, and occasionally got some refills for people (he was too worried about spilling drinks to do that very often!).  People were so sweet and generous to him and often gave him tips.  He actually came home with a little over $20!!!!  And I have to say he worked hard for his money!

At the end of the night, they let Zachary wash up and make his own pizza.  He chose to top it with pepperoni, sausage, and ham.

The finished product!  It was delicious :)

Of course Eli had to make one too.  He made a personal pan with pepperoni, sausage, and mushrooms.  It was just as good!  (don't worry, there's an employee just out of the picture who was right with him as he stood on the stepstool to make his pizza)

He was worn out after a long day and barely stayed awake long enough to change into his pjs!



Tonsillectomy
Eli had his tonsillectomy on Thursday, February 26.  He did very well although there were a few tears as he had to go through the double doors with a nurse & child life specialist but without mommy and daddy.  We had talked about that a lot before the surgery day and he was fine with it....until time to do it!  After he was in surgery the child life specialist assured us that he did fine once they were just a little way down the hall.  After surgery the ENT came to talk to us and said the surgery went very well.  She drained a lot of fluid from behind both ears and placed the tubes.  Then she took out his tonsils and adenoids.  Dr. Hamaker said both sets of those were much larger than she anticipated.  Because of the severity of Eli's sleep study, his heart history, and the size of glands that were removed, she and the anesthesiologist, Dr. Monte Harrison (a pediatric cardiac anesthesiologist who has worked with Eli on multiple occasions) both felt it was in Eli's best interest to be admitted to the PICU.  He was doing fine but there was too much potential for trouble.  She actually said, "Dr. Harrison and I would feel much better knowing he's in the PICU tonight."  Of course Bryan and I had no problem with it, we knew he would be well taken care of wherever he needed to be.

We got to see him in recovery a little while after that.  He was already waking up a little and even took a couple ice chips before transport to PICU.  I sat on the gurney and held him for transport.  Once we got to PICU he was very awake and entertaining the staff.  He was definitely not his normal self, but he did talk some, drank liquids, asked for chips (of course that didn't happen!), and had lots of visitors.  Through the night he was put on oxygen for a few hours as his sats were dipping to the mid 80s.  Although mid 80s are not ideal for him, we also knew that was better than the mid 70s he had been dipping into during his sleep apnea episodes before surgery so it was actually an improvement!  He did have a few hours of sleep where he kept his sats up without additional oxygen.  Pain control was our main concern.  He was on Tylenol and Motrin every six hours and we alternated so he would get one or the other every three.  That's actually the schedule he needed once he was home as well and it stayed that way for almost a week. 

Eli did so well the first night that he was discharged from the PICU.  We had anticipated a transfer to the general peds floor for at least a night but docs felt he was ready and wanted him out of the hospital.  There were a lot of sick kiddos in there and no one wanted Eli to catch anything by being in the hospital any longer than necessary.  We had prepared ourselves to stay for a week (seriously, Eli has never had an overnight stay at the hospital so why wouldn't we prepare for longer?!?!?) 

We knew that even though he did very well initially, it didn't mean his entire recovery would be smooth.  Overall we didn't encounter any major problems but his pain control was a big issue.  A lot of kids are fine with just Tylenol and Motrin.  Some require something a little stronger such as Lortab.  Eli cannot take Lortab, which is a drug that is a combination of acetaminophen (Tylenol) and hydrocodone.  His system cannot handle the hydrocodone.  One dose will constipate him for days and cause a lot of vomiting.  So we didn't have too many options.  Luckily he did pretty well by staying on the Tylenol or Motrin every three hours, using heating pads on his neck, and encouraging him to drink (which he probably viewed as a form of torture).  He couldn't/wouldn't sleep anywhere but upright on our couch (usually in our arms) for almost two weeks.  As we expected, his oral intake was much less than normal, but as long as he was drinking enough to keep the muscles in his throat moving, we didn't care to nourish him by using the feeding tube.  (Again, we're so happy he still has that and yet he isn't dependent on it).  On day 10 he started acting much more like himself.  He was playing again and having a lot of silly moments.  He had an ENT check up the other day and things are mostly good.  One tube has clogged a little with dried blood so we have to put a mixture of peroxide and water in his ear twice a day until that's cleared.  We expected that to be like the two of us trying to drown an elephant, but surprisingly Eli tolerates it just fine. 

While he was hospitalized, there were visitor restrictions in place due to the flu outbreak.  Eli, however, had a steady stream of visitors through the evening, night, and the next morning.  He is so popular and well known there that many PICU staff came to see him, nurses and staff from the third floor, and even nurse practitioners and doctors from his various specialties came to see him as they were at the hospital rounding on other patients.  It was so nice to see them.  It was really special for many of them to see Eli doing so well even though he wasn't himself because of the tonsillectomy.  The PICU staff really enjoyed seeing him because they usually only see kids at their absolute worst.  So to have Eli sitting up, talking a little, drinking, playing on the ipad, and making a few demands was nice for them!


As we waited for surgery he got to practice driving.  Eli wasn't too sure at first but got used to it pretty quickly.

He loved playing with bubbles Daddy blew for him in the hallways.  He wanted to take them back to the OR when he went.

Snuggled in bed in the PICU a few hours after surgery.  And as always for anything medical, Pablo was with him




Meeting Cody
Cody Zeller is a player for the Charlotte Hornets.  Just in case you don't know, he's the youngest of three Zeller boys who are basketball royalty here in Washington.  They all three won state championships in high school, each were chosen as Mr. Basketball, each played for a Division I college team, and each has played or is playing in the NBA.  Cody and the Hornets were in Indianapolis on April 3 and we had the opportunity to get to see Cody and have a few minutes with him.  Unfortunately for him, he's sidelined because of a shoulder injury right now.  It worked to our advantage though because he spent a lot longer with us than we expected!  During our twenty minute visit he talked with each of us and asked the boys questions about sports and school.  Cody found out Zachary attends North Elementary and immediately named all the teachers he had from kindergarten to sixth grade.  Zachary was amazed that although he hasn't had any of Cody's elementary teachers, he knew several of them because they're still teaching at North.  He thought that was pretty cool.  Cody signed several basketball cards for us and even compared shoes with Zachary.  We gave him an Eli's MVPs bracelet and briefly told him about Eli's history.  When he read the bracelet, Cody said "I've heard of Eli's MVPs" and he immediately put it on.  After he left to shower before the game (he is able to do some running drills during warm ups but doesn't dress for the games right now), one of the Hornets PR guys came out.  It was the man Bryan had talked to about setting this up for us.  He had a bag of Hornets tshirts for us.  Each shirt was different so that was even more special.  We got to stay on the sidelines before the game started and the boys got several autographs on a basketball we had brought.  Everyone was very nice and friendly.  We really are Pacer fans, but are sports fans in general.  We really appreciated the opportunity from Cody and the Hornets.  (by the way, since we were cheering for both teams, the Pacers won decidedly that night.  The last few games we've been to they lost!)

The four of us with Cody.

Zachary sitting with Noah Vonleh, former IU player and current Hornets player.


Eli was really enjoying talking to Noah Vonleh, but as soon as he saw me about to take a picture he walked away.  You can see Noah laughing at him here.

The boys getting their basketball signed by Lance Stephenson who now plays for the Hornets but he played for the Pacers last year.

Kemba Walker signing the boys' ball.

Eli sitting on the Hornet's bench during pregame warmups.  He was seven seats away from NBA legend and current Hornets assistant coach Patrick Ewing.  It's a shame Patrick had no idea what a celebrity was sitting at the end of his bench! 

Eli showing the ball with autographs.  He wouldn't turn it around for the picture so we could actually see the signatures, but was very interested in dribbling it every chance he got.

The boys and Cody comparing shoes.


A really good picture of Zachary and Cody.  If you see that bulge from Cody's right arm, it's not his muscle, it's my belly in the background!



Pregnancy
I'm still pregnant.  Very pregnant!  I'm to the point that strangers will approach and start by saying "I usually never comment about a pregnancy because you never really know for sure, but it's obvious you're pregnant."  Yes, yes, it's obvious!  I'm actually outgrowing most of my maternity clothes at this point.  I'm pretty sure all I have that truly fits the way they're supposed to are earrings and my glasses.  And because we're pretty sure (99.9999999999999999%) this is our last one, I refuse to buy anymore clothes.  So if you see me and my belly is showing slightly beneath my shirt, just remember they don't make a lot of maternity clothes in extra length!

I'm at the 36 week mark so we've got less than a month to go.  And a lot of work to do!  We've been so busy with Eli's surgery, the donation drive (more to come about that event in a later post), the Pizza Hut fundraiser, a few minor illnesses, and life in general, that we haven't gotten much ready for this babe.  Fortunately, with this being our third, our home is pretty much a kid zone anyway!  However we figure we should at least clear out the bassinet that has been a "storage" unit, shall we say, since Eli outgrew it.  We don't know the gender (but we have never found out with any of our kidlets) so we have several gender neutral outfits packed away.  I need to dig those out and wash them.  We have had to get a couple new pieces of equipment for this kid since our infant car seat from the boys expired and those need assembled.  Who says the third gets all hand-me-downs????  There are several other things to do as well, but thinking about it is a little overwhelming! 

I've been in physical therapy for the last month.  Since I was about six months along, I've had a lot of pain in my hips, lower back, and pelvis.  This baby feels like it's lower.  I don't expect to be discomfort free during pregnancy, but this was really painful and it was difficult to get through the day.  It turns out I have pelvic insufficiency.  Basically, my pelvis is lower on one side, tilted forward at the bottom, and twisted a little.  I've been going to therapy weekly and doing exercises at home twice a day (okay, fine!  sometimes it's only once a day!).  All that is definitely helping, but frankly it's unrealistic to expect to be pain free as my pregnancy is progressing.  During pregnancy the female body secretes a hormone called relaxin which helps "loosen" the pelvis in preparation for the birth.  So all I can do is try to strengthen the muscles of my hips, upper legs, lower back, and pelvis so they can support my loosening, twisted pelvis.  Yes, I've had the pregnancy waddle for a long time and it's only made worse by this!  I'm really slow to walk, have trouble lifting my legs to get in our van, look absolutely ridiculous trying to get out of our low to the ground car, can't stand or sit for long periods, take Tylenol regularly, and I ice or have a heating bag on my crotch a couple times a day.  It's definitely been a different experience for sure!  The good news is that this shouldn't have any impact on a regular delivery, it doesn't affect the baby whatsoever, and delivery typically relieves the symptoms.  The baby is growing well and moves A LOT!  Especially at night or when I'm sitting in the van (babe does not like the true upright sitting position for me).  My due date is May 4, but I just feel that I will go sooner.  Maybe not, but in my head this is a late April baby. 


Growing baby! 36 weeks

Belly size is just under 48"
The last ultrasound we had was at 27 weeks.  During other ultrasounds we thought we could see some features of Eli and some features of Zachary on the baby.  However, this ultrasound was all Zachary!  I can't find the profile picture I have of Eli after he was born so this is the best I could do.  Zachary is six weeks old in the photo on the left.  Baby Veale #3 is in the middle.  Eli at about 18 hours old is on the right.  I'd forgotten how Eli barely had lips because his face was all cheeks!!!



Life in General
The boys are both doing well in school.  Eli still goes three mornings a week and also receives therapy (PT and OT both) through school.  The other two days, he has started physical and occupational therapies at our local hospital.  He was receiving therapy at home but our insurance no longer considers him homebound because he goes to preschool (even though he was considered homebound when he started preschool in August).  Our only problem with switching is our insurance will only cover 25 therapy sessions as an outpatient but it's unlimited in the home.  Eli does have Medicaid now as a secondary so we're hopeful they will pick up most/all of the tab after our insurance allotment is exhausted.  We had no problems with the home therapy company we were using, but we are glad for this change.  He is participating more at the hospital than he was at home.  He is a bit of a manipulator (I mean that with lots of love, but it's true!) and having therapy at home made it too easy for him to change the rules and get away from what the therapist was doing.  At the hospital it's a little easier for them to keep him on track.  He still tries to get his way though!  His biggest excitement these days is that he's playing T-ball this year!  Because of the rainy weather he's only had one practice so far, but he's very excited.  We don't think any of his T-ball teammates will throw hard enough to hurt him, but he's got a special shirt to wear that has a lot of padding in it to protect his sternum.  We wanted him to get used to wearing that for sports and he thought he was really cool wearing it for practice last weekend.  I'm very curious how he'll do during the games...not so much because of physical abilities, but because of his, well, hard-headedness!  Daddy and Aunt Kendra are the coaches for his team which is good so they know what he needs more help and encouragement with, but also he knows he can push their buttons.  It will be an interesting season! 

Zachary is in PAL league now which is the pitching machine.  So far his coach (Bryan) says Zachary's hitting well and isn't afraid of the ball coming at him at all, but he needs to work on his throwing.  He's excited about baseball this season as well and I love seeing him having fun like this.  He's probably the biggest on the team.  He told me there was one kid bigger than him at practice one day, but it turns out it was a teammate's older brother (that kid was 11, I think!).  The last time we measured Z, he was 4'9" and was just over 100lbs.  That's my seven year old baby!  I didn't weigh 100lbs until I was a 5'8" high school freshman and now my first grader already does!  He's pretty proportionate weight/height wise and he's active so we're not worried about anything.  He's always been tall and looks older than his age.  Because of that, it's sometimes hard to remember that as a seven year old, he's entitled to a certain amount of immaturity and he definitely deserves his "babying" time as well.  I don't know what I'd do without his help around here.  Zachary is so excited about this baby coming.  He's hoping for a girl, but often says he's happy with either.  Many times he's told me things he can do to help with the baby... but it never involves changing diapers!!!!




Well there's most of what we've been up to since my last update.  I'll have another post about the donation drive, but right now I don't have my completed list of items donated and I definitely want to have that included.  As always, we thank you for keeping up with our family, praying for us, and all the support we've received.  We are very humbled by all our generosity and try to pay it back in ways that help others.  We hope you're all doing well and remember to cherish Every Little Beat...


PS --  Eli wanted to include a message:  kkkp;[ jun-\k,''; i9j