Sunday, January 28, 2018

Cardiac Update

Well, a year and a half ago I published about Eli's first day of kindergarten.  Then life happened and I chose to live in it instead of documenting so much of it.  I wish I had blogged more, but by not blogging, I did get more sleep and playtime with the kids!

Eli has some things coming up and I thought it was time to update here.  Two years ago we saw Dr. Steinberg who is one of Eli's cardiologists.  Basically he is Eli's pacemaker doctor.  Now Eli does not have a pacemaker, but he did at one time.  Because of the staph infection he acquired, the pacer had to be removed which fortunately was an option for Eli.  Without the pacemaker, Eli's baseline rhythm is called a junctional rhythm.  I won't get into all the details of it, but in layman's terms, it basically means his heart rate is much lower than that of a heart healthy seven year old (yes, he's seven now!!!).  Eli's average heart rate is 58 beats per minute, but can go much lower.  For example, when he's sleeping he will drop to the upper 30s.  Those are low numbers for an adult, but especially for a kiddo Eli's age.  However, Eli has always tolerated that rhythm pretty well so as long as he's asymptomatic, we just let him go.  Because he's done so well with it, Dr. Steinberg said for Eli to continue follow ups with his regular cardiologist (Dr. Kumbar) every six months and not to see him again for two years.

So we've seen Dr. Kumbar every six months.  Once a year Eli wears a Holter monitor for 24 hours (like an EKG that shows his heart rhythm for a full day) and he has an echocardiogram (an ultrasound of the heart that shows the vessels, chambers, Fontan structure, and blood flow).  Our most recent appointment was the middle of January and it was with Drs. Kumbar and Steinberg since it had been two years.  Eli's echo looked pretty good.  Dr. Kumbar said it was essentially unchanged from the year before (which had very few changes from the year prior to that).  So structurally his heart is in pretty good shape (for a kiddo with his type of defects).

However, the Holter monitor showed a different story.  Eli's baseline heart rhythm is still that junctional rhythm.  But now he's having some runs of a different rhythm.  Previous Holters showed that too, but it was just two or three beats here and there.  This Holter showed he's sustaining that rhythm for 2-3 minutes and it's happening a couple times a day.  They're saying this rhythm is an atrial tachycardia, which just means a fast heart rate initiating from the atrial part of the heart (upper chambers) instead of the area it's supposed to come from.  When he's in this rhythm, his heart rate is around 200 beats per minute.  The good news is that Eli doesn't show any physical signs of going into or out of this rhythm.  However, it's not a good rhythm to be in and we can't expect him to stay symptom-free from it.  And it's also not good for him to slip into and out of that rhythm.  It's too much stress on his already stressed heart.

Long story short, we are likely looking at Eli having the pacemaker placed again.  Before going that route, Dr. Steinberg wants to try to control it with medicine first.  If we can do something simple to control it, of course we need to go with that.  So Eli is now on a beta blocker once a day.  He's been on it for a week at a low dose.  The goal is for him to be on it at this dose for two weeks then double it.  After two weeks on that dose, then add another half dose to reach the maximum dose for his weight.  The reason he's being slowly acclimated to this is because the medicine has the potential to lower his already low heart rate.  His average is 58, with this medicine it could easily be lower than that.  He may or may not tolerate an average rate lower than what he's already at.  So while on this medicine we have to watch him very closely to see how it is affecting him.  Because he's at school most of the day, we've had to add to the workload of his teacher and school nurse to make sure they're aware of what's going on with him and have them help us watch for symptoms.  What symptoms?  Most likely it would be excessive tiredness.  His low heart rate would not provide enough blood flow to keep his energy level up.

After six weeks, he will have another Holter monitor to see if there's any change to his rhythm.  If he has any trouble adjusting to the increased in medication, then the Holter will be done sooner.  If Eli doesn't tolerate this beta blocker, Dr. Steinberg said there is another medication he could try.  It's a lot stronger and to start it, Eli would be hospitalized to closely monitor him as he has the first few doses.  We're hopeful these medications can help him, but realistically we know he will require a pacemaker again at some point.  We'd just like to keep pushing that off as long as we can, but will do it whenever Eli needs it.  One benefit of having the pacemaker is that Eli wouldn't have to do the Holter monitor anymore.  The pacemaker would record everything and the doctors could read the reports from that instead of having additional testing.

In slightly unrelated news, Eli is having some dental work done tomorrow (Monday).  Peyton Manning Children's Hospital doesn't have a pediatric dentistry department, so we are going to Riley.  Eli has a large cavity that has to be taken care of soon.  In addition, he has a couple smaller ones and needs some sealants.  The doctor feels like it's possible to get it all done as an outpatient with nitrous oxide (laughing gas) and cardiology has okayed the plan.  If he requires anything more than the gas, he will need to be hospitalized and have the work done under sedation.  The plan is to get it all done as an outpatient tomorrow, but it could change depending on his cooperation level and if she finds any other work that needs to be done more invasively.

As usual, thank you for your prayers and support.  Eli is a happy first grader who is learning to read.  He's doing pretty well in school although it takes a lot of patience to get him through!  Our family recently moved (just last weekend!  I really need to blog about that!) and we are beginning to get settled in our new home.  Eli is playing YMCA basketball this season and his first game is next Saturday.  He is very excited for it and is also excited for baseball this spring.  He still loves sports!  He's recently developed a love of video games too.  We're seeing that as a good thing as he has to use Lefty some to use the controller.  He gets very animated during his video games (usually basketball, football, or hockey games) and is funny to watch.

I promise to not wait so long between posts.  Thankfully we've not had anything major to update regarding his health until now.  Thank you for following along and caring about us!
Not a great picture, but it's the last photo of us in our old house.  It was the morning of the move and everyone had to crowd into our bed....yes, Pablo is still an important part of our life!

Getting his vital signs before his echo.  You see the blood pressure cuff on his left arm.  His hands were cold so we had trouble getting an accurate pulse ox.  She used one that went on his ear to get a better reading.  If you look at the box, it's showing Eli's pulse ox of 90% and a heart rate of 59.  Both those numbers are pretty average for him.

This was toward the end of the echo.  Eli's Fontan circulation isn't just 'at his heart' as many would think.  It involves vessels going to his lungs and the tech has to get up under his neck to get all the images the doctors need.

After Eli's initial dental consult a few weeks ago, we visited the Pacers Pro Shop.  While there, we found a deal on this outfit and had to get it.  We got the same deal on a cheerleader outfit for Charlotte and they each got a new Pacer basketball.  Eli is extremely proud of his new outfit and wants to wear it all the time.

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...