Thinking About My Dad

My dad died eight years ago today.  I'm still not used to saying that he's gone, but at the same time it seems like it's been longer than that.  Although I miss him every single day, the hardest days for me were the days Zachary & Eli were born.  I would love to see him hold them & do all the grandparent things.  We're sooo lucky to still have my mom & Bryan's parents, but the little girl in me wants my dad there too.  I know my dad sees the boys, but I want to see him enjoy them. 

Today also makes me think back to one year ago; Eli was scheduled to have his G-tube surgically placed.  When they set the date for 02/11/11 it didn't bother me at first, but as the day got closer I got more nervous.  It's always scary to have your child under anesthesia, but especially so for one with such a complex and stressed heart as Eli's.  He was just a month out from major heart surgery, he was only nine pounds, he was only 15 weeks old, and his surgery was scheduled for the seventh anniversary of my dad's death.  I just made myself view it as a sign that Dad would be closer to him and help protect him through the surgery. 

Then, as luck would have it, things changed.  The two doctors who were to do Eli's surgery got pulled into two emergency cases.  They wouldn't be available to work on Eli until after 5 that day, which was not something they wanted to do.  Eli's surgery was pretty routine, but he is not, so they wanted to do it early in the day just in case something did happen.  He was rescheduled for Monday morning, Valentine's Day.  I've never been so relieved for someone else to have an emergency (I was told both emergent cases did fine).  In my heart, I knew Eli would be fine from this surgery, but the dark shadows in the back of my mind wouldn't go away.  I couldn't bear to lose them both on the same day.  Fortunately, everything went well with the G-tube placement and we have absolutely no regrets about doing it.  I'm sorry that he needs it, but it has been a major relief and assistance to have it. 

Just some random memories about Dad: 

• I believed anything he said, against my better judgment:  I went to a hardware store to buy a left-handed-monkey wrench because he asked for one, I believed he was a dog in a former life, and that he chopped every piece of wood in the woodpile at his old homeplace 30 years after he left there.
• four-wheeling at Grandma Dot's through the strip mines
• picking out my first pair of glasses with him:  I have no sense of style, especially as a fifth-grader and those glasses proved it.  They were ugly blue snakeskin type frames that were too small and with lenses that tinted in the sun.  As soon as I saw my mom's face the first time I wore them I knew they were wrong, but I couldn't have new ones for at least a year.  The second pair was no better than the first!
• he wore a cowboy hat and boots almost all the time.  Not a lot of guys can pull that off, but he was an authentic "don't give a s*#t" kind of guy so it worked

It may sound strange, but Dad's illness and death really helped prepare me to deal with Eli's condition.  It taught me to "let go and let God," that He is guiding me even when I feel like I've fallen into an emotional black hole, and that despite what happens there's always another reason to keep going. 

No matter how old we are, parents have their ways of teaching us lessons...in life and in death. 

Glen Michael Norris

02/05/48 - 02/11/04

♥ Love you and miss you, Dad! ♥

GI Appointment

Yesterday (01/19) Bryan & I took Eli to Indy.  There was some snow on the ground and it was actively snowing when we left town so I got my snow fix for a little while!  Eli had an appointment with Dr. Maisel, his gastroenterologist.  She's the one who placed his feeding tube.  He weighed 20lbs 13 oz and was measured at 30 inches long.  Each of those are in the 10th percentile for his age.  We really haven't followed the growth chart for Eli the way we did with Zachary; it was too depressing.  For a while, both our boys were off their respective charts, but in different directions.  Now Eli is on it and consistently gaining an appropriate amount of weight!

Dr. Maisel was very pleased with his size and his activity level.  Our next GI goal with him is to get him off his special formula and onto regular milk products. If you don't remember, he was diagnosed with a milk protein intolerance at 3 months old.  We took him off breast milk and started using Alimentum, which has the milk protein already broken down.  He's been on that ever since February 2011.  Most kids with a milk protein intolerance grow out of it by age one, so we're definitely in the "safe zone" to start trying.  He has had no problems with food that has milk cooked in it (scrambled eggs, macaroni, cookies, cake, etc), but other than putting some breast milk in his formula, he hasn't tried milk.  She recommended we start replacing one of his daily bottles with a bottle of PediaSure.  As he tolerates that, we increase the number of PediaSure bottles and decrease the Alimentum bottles.  We can also use a little more of my frozen breast milk.  So far today he's almost finished a PediaSure (vanilla flavor, we have chocolate too!).  We'll keep that up and keep a watchful eye on his stools since his symptom of not tolerating milk is blood in the stool. 

She also indicated that, although now is not the time, he will come off the Prilosec at some point.  That completely surprised me.  I never really considered that he wouldn't need that all his life since he's going to be on other meds long-term.  My surprise seemed to surprise her.  Right now, Prilosec is his only prescription medicine, the other two are over the counter.  We know he will go back on some type of cardiac medicine to help his heart function, but he isn't for now because his junctional rhythm lowers his heart rate and a side effect of those medicines is a lowered heart rate (the combination would be dangerously low).  She, along with Dr. Amy & our speech therapist, recommend a dietary consult.  We had one set up prior to Christmas, but with all the illnesses we had we decided to cancel & reschedule later in Jan.  I need to get that set up so we can have a local resource for helping us adjust from formula to milk products.

She also wanted some blood work done to make sure his body is absorbing all the nutrients he requires.  She asked if he'll be under anesthesia for anything in the next month or so.  Dr. Maisel is very considerate and said that she could wait for labs to be drawn if he's going to be under.  Fortunately he shouldn't have anything like that until his Fontane completion, so unfortunately, he had blood drawn yesterday.  Luckily, the lab tech was good and only had to stick him once.  He screamed at us and tried to get away, but it actually went better than I thought.

Eli & Mommy waiting for the lab tech to draw his blood.  He loved the moveable arms on the chair (until we used one to help hold his legs down).

Before the appointment with Dr. Maisel we took a trip to the PICU and got to see some familiar faces.  Eli was very good and even let a couple of the nurses hold him.  I think it's good for them to see how well he's doing, partly due to their skilled work!  I wish I had gotten one of him with Dr. Maisel.  We met another of Eli's doctors in the hallway, Dr. Heather Bricker.  She was the hospitalist in charge of his care when he was diagnosed with the milk protein intolerance.  She hadn't seen him since last February and was very excited to hear good reports.

Three of our favorites, Brittni, Nicole & Katie.  They were so glad to see him.

Nicole LOVED Eli's cheeks.  He was pretty good about it (I think he's used to people's fascination with those things), but he was getting tired!

Brittni is our all-time favorite nurse at PMCH.  There are several great ones, but she's been with us through a lot of his major events.  She was the nurse who admitted him to PMCH back in January when he got off the helicopter before Mommy & Daddy could get there. She was also his nurse the day of his first surgery and she was still on duty when he was brought back from the OR. We've had her several times, and it seems like whenever something big is happening she's there for us!

After the appointment (and a 3:00 lunch at Fazoli's) we went to a party store so I could buy things for my sister-in-law's baby shower.  I'm only a LITTLE BIT EXCITED about my little niece's upcoming arrival :)  I hope she can keep up with my monsters (I mean boys).

Since Bryan took the day off for the appointment, he was able to take Zachary to school.  Zachary enjoyed that, but still did his "shy" thing right as they were walking in the classroom.  He loves school, his teacher, his friends, but always gets a little shy right as we're entering the classroom.  He'll hang up his coat & start playing just fine (I even have to ask for a bye-bye!), but he doesn't like to walk into a roomful of people.

Speaking of Zachary, he's playing Biddy Ball with the YMCA this year.  They've had two practices so far and have one more before their first game.  I watched the last practice and am eagerly awaiting an actual game!  To say the least, it should be very entertaining.  Adding to the entertainment, Zachary's team coach is Bryan.  I don't know who I'll enjoy watching more...four year olds "playing" basketball or Bryan's frustration!  Team pictures were Wednesday night.  We chose a package with trading cards so we had to include Z's height and weight.  He's 53 lbs and 46 inches tall.  He's two inches from the adult rides at most amusement parks (not that he'll ride them!).  

Time for me to go fix lunch & get ready for therapy.  My wrist is doing very well, just gets stiff if I don't do my exercises.  Thanks for checking in!

Emotional Time

What a range of emotions today!  On the non-serious side, I had therapy this morning and then went to Evansville.  My stitches were taken out and I got a good report.  It feels soooo good to have those things out, my wrist had been itching like crazy.  I'm much happier now :)  I even got to have a grown up lunch with a friend I hadn't seen in a long time.  What a treat for me!

Both boys are almost back to normal.  They both still have runny noses and Eli has a cough, but they're both so much better.  Zachary finally got to go to school for the first time since before Christmas.  He took a long nap this afternoon, not used to getting up early anymore I guess! 

Eli is a master at crawling & pulling up to his feet.  He's really quite the character.  He loves making us laugh and is full of surprises.  The other day he climbed the stairs (9 steps!!!) without any problems.  The farthest he'd gone before was two steps, so we didn't expect nine.  His appetite is getting much better too.  Hopefully he'll be over the last of his cold in the next few days. 

The past two nights have been very emotional.  Eli's heart surgery was one year ago today, Jan 10 (although it's almost midnight so it'll probably be the 11th by the time I post this).  Putting him to bed last night was really hard.  I kept thinking back to the night before his surgery.  Bryan & I didn't sleep at all.  We were so scared he wouldn't make it through the operation; the surgeon said there was a 30% chance he would not. 

Normally if you hear there's a 70% chance of something, it's pretty good odds.  A farmer loves a 70% chance of rain in the summer.  Anyone would love a 70% chance of winning the lottery.  Most people can appreciate a 70% chance of snow at Christmas.   A 70% chance your 11 week old son will live is not good enough.  It was the absolute worst night of our lives. 

We were also told to expect that he would be on a heart-lung bypass machine IF he made it through surgery.  Our baby made it out of the operating room and was NOT on the machine.  His chest incision had been left open for several different reasons.  It was covered with a clear dressing.  When we finally got to see him, we just stared at his little chest, rhythmically rising & falling, rising & falling, rising & falling.  Even with the incision, it was the most beautiful sight. 

I couldn't sleep tonight.  I keep reliving all those events and emotions of last January.  Last night, I cried a lot while putting him to bed.  It was hard to let go of him, even for the night.  I lost count of how many times I crept back in to watch him sleep.  The number of tears I shed last night is a small fraction of the tears I shed 365 nights ago.  Tonight, I keep going back to check him, but I'm not as overwhelmed with emotion as I was last night.  Tonight I can remember more of the happier moments, I'm not as focused on the fear.  The future is still scary, but even if I could look into a crystal ball, I wouldn't do it.  We just have to take things as they come and trust in His plan.  I knew that before last January, but I REALLY believe it now. 

Last night, while I rocked Eli & cried, he just stared at me with those big, brown eyes.  His little hand touched the tears on my cheek and he smiled at me.  He & I have had many bonding moments over the past two years (yes, almost two years; he lived in my belly for 9 months!).  Some were the normal mommy & newborn moments.  Too many have been in the hospital setting, but last night was one of the most special so far:  As I was giving thanks for Every Little Beat of his heart, I realized that you just haven't lived until your baby plays with your tears of gratitude. 

One Year Ago Today

It's hard to believe that at this time one year ago today we were admitting Eli to the local hospital.  He was 10 weeks old and weighed less than he did at birth.  We were thinking he had stomach issues, little did we know what we were in for.  I think you all know the rest of the story.  It's been a crazy year full of stress, tears, prayers, and sleepless nights, but we've learned so much about ourselves & become a stronger family because of it. 

The outpouring of support we received in those first few days was overwhelming.  The support has continued (as has the stress) and we are so grateful to all of you who help us in so many ways.  Thank you for caring about our family and our beautiful little boys.  Thank you for realizing how difficult this has been on Zachary & for anything anyone has done to help him cope and adjust.  Thank you for all the kind words, cards, gifts, dinners, handmade blankets, offers of help, monetary donations, hugs, and, most of all, encouragement.  Most importantly, thank you for all the prayers.  God is good.  He's brought us this far, He won't abandon us.  There's a reason Eli was made this way and a reason why he was given to us.  We are so grateful that he & Zachary are ours.

Each day is hard, but at the same time, we don't focus on Eli being a "heart baby" every day.  He's a normal little boy who loves to ransack the house, torment the dog & imitate his brother.  People who don't know about his issues are surprised to learn of them because he looks so normal & healthy.  We do that too.  Most days are spent doing normal family things.  There's always that fear in the back of our minds or that sinking feeling in the pits of our stomachs as we wait to see what unfolds next.  It's difficult not to focus on the negative, but we have so many positives in our lives that we can't stay negative for long.

Thanks again for all the support over the past year. I wish I could write that "we're almost done with this journey" or that "Eli's heart is fixed" but that will never happen.  We're in this for the long haul and I'm afraid of wearing people out with our story and prayer requests, but I won't stop!  Thanks for caring and remember to treasure Every Little Beat....

Here we go again...or still...

Eli had an ear infection/diarrhea/teeth cutting episode in early December.  He recovered from that, we did the Holter monitor (see previous post for all that info), had Christmas and thought all was good.  Since Christmas we've been a very busy group!  The day after Christmas, Eli started with a runny nose.  He progressed to a full fledged cold since then.  His eyes get matted shut, he has a breakdown if he sees a Kleenex in the room because his little nose hurts so badly, and he's coughing so much that he can't sleep. 

We started getting really worried yesterday because he wasn't even playing anymore.  The poor baby just sat on our laps and whined.  He's not normally a whiner, he usually just yells for what he wants then moves on!  We went to see Dr. Amy today and found out he has another ear infection and red, swollen tonsils.  Fortunately she didn't hear anything in his lungs, so we think the cough is from all the congestion.  Good news is that he's gained another ounce this past month despite his decreased appetite lately.  He's now 20 lbs 13 oz!  Eli got a Rocephin (an antibiotic) shot in her office and started an oral antibiotic at home.  As soon as we got home he went to sleep and has been in bed for 3 hours!   

So, what does momma do when her baby is finally getting some sleep?  She sits on the couch eating Oreos and watching mindless television.  It was awesome :)  I needed some downtime to rest my wrist.  I had surgery to remove a cyst on my wrist 12/28.  Things went well and I'm actually doing better than I expected.  I start physical therapy tomorrow.  I'm supposed to have a 5lb weight restriction, but that's difficult with a sick little guy around.  Luckily, Bryan has been willing to take care of a lot of things and my mom & his sister Kendra have been huge helps.

Zachary had his first Snow Day today.  Washington schools were on a two hour delay, which means that morning preschool was canceled.  He needed to sleep in and "we-wax" some too!  Right now, Zachary, Bryan & Kendra are in Indy at the Kids Club event.  They get to play on the field and I think there are bouncy houses for the kids too.  Some players come out later for autograph sessions.  I'm sure they're having a good time!

I hear a baby starting to wake up so I'll end this update for now.  Hopefully the nap did him some good and he's ready to eat a little.  Please pray for a good night for him, he hasn't slept well for two nights because of coughing so much.  We hope all of you had a wonderful Christmas and we wish everyone much happiness & health in the New Year!

Good News...?

Busy couple of days around here!  Took Eli to our local hospital to be set up with a Holter monitor Wednesday morning.  He screamed when they put it on him.  It doesn't hurt, it's just stickers on his chest, but I swear he has "flashbacks" to his hospitalizations and he knew he didn't want those on him.  Once he had a shirt covering them up he was fine.  He spent the next 24 hours with a trail of wires coming out of his clothes attached to a recording device (about the size of a small cell phone).  It was like a tail.  Overall he did really well with it, much better than I had anticipated, but it was still stressful.  If he saw the wires on his chest he would frantically start pulling at anything he could grab (wires, feeding tube, etc) so if he had to have his clothes changed it needed done very quickly! 

Thursday morning, a little over the 24 hour mark (we're overachievers!), I took the unit and stickers off of him.  I thought he might do better with just me doing it instead of strangers at the hospital.  He still cried and fought me but it was over pretty quickly.  When we returned it to the hospital they reviewed the recording to make sure it was good enough and then it was processed and sent to our doctors.

Today Eli & I went to Evansville (what a madhouse!  You'd think it was the only mall for miles & miles around.  Oh, wait...).  Eli was fine when we got there but turned on his screamer when they tried to do crazy things to him, like weigh him, take his blood pressure, and O2 saturation.  Heaven forbid they try to listen to his heart with a stethoscope.  We also had to do an EKG.  He turned into a double octopus on crack.  We didn't give up and finally got what we needed (mostly). 

Dr. Steinberg was very pleased with Eli's progress and weight gain, and asked several questions about his activity level, sleeping habits and overall health & attitude.  He had reviewed the reports from the Holter monitor & the EKG;  they showed that Eli's average heart rate is 71, much lower than that of a normal 13 month old, and his rhythm is still junctional.  Everyone agrees that if he was going to return to a normal rhythm on his own it would have happened by now.  He needs a pacemaker. 

The good news is that because he is doing so well, we can wait longer before doing it.  Dr. Steinberg thinks we could possibly wait until Eli's third surgery and do both at the same time.  If he starts having trouble gaining weight, is easily agitated (without medical personnel bothering him), or just has general problems, then we'll re-evaluate.  For now the plan is to see Dr. Kumbar at the end of February to do an echo (ultrasound of the heart and its vessels) and then back in June to see Dr. Steinberg again.  We'll probably get to repeat the Holter monitor prior to that visit as well (oh joy of joys!).

At that point we'll begin discussion about a heart catheterization prior to his third surgery.  That surgery is called a Fontane completion.  The surgery he just had in September is called a Hemi-Fontane (the two are essentially the same surgery but it's too much to do at one time so it's done in two stages).  If given the chance to schedule, they don't like to schedule the Fontane procedures in the winter months because of the increased risk of respiratory complications.  After today's appointment it looks like Eli could have his Fontane completion by the fall of 2012.  Nothing is set and we'll have to see what happens over the next few months.  Of course if Eli's condition changes, they can always proceed with the pacemaker.

So, our expected news is that, yes, he needs a pacemaker.  Our good news is that we don't have to do a pacemaker as soon as we were anticipating.  Our not so good news is that his third surgery may be sooner than we were thinking (we were hoping for 18-24 months after the second one, which would have been summer 2013-ish).  That isn't a huge deal, I suppose, but it seems like 2011 was filled with major surgeries, procedures, & really heavy stuff.  I guess I was hoping for a little "time off" before the final stage.  We know he has to have it done, so in the long run, when it happens doesn't make a big difference.  As long as he's growing and functioning well, we're happy. 

Overall today was a very good visit.  I had fully expected to leave there with a date set for pacemaker placement so to find out that can wait indefinitely was very uplifting.  Dr. Steinberg said something very nice and encouraging as we were leaving..."Keep up the good work."  Dr. Amy says that to us a lot too.  Eli does all the hard work, but it does feel good when the efforts Bryan & I put in are acknowledged.  We're just so happy that he's here to keep us up at night, drool on our furniture, and torment our dog!  We're very blessed indeed.

Thanks for checking in!  I'll get another post up about our Christmas festivities, but until then we'll continue to cherish  Every Little Beat... 

MERRY CHRISTMAS!

~It's Beginning to Look a Lot Like Christmas!~

Merry Christmas!  The Christmas Spirit is starting to work its way through the Veale house!  We've gotten a lot done, but as usual, there's still a lot to do.  We made cookies this weekend (a lot, I haven't even counted!).  Zachary loves to decorate a cookie then eat it before the icing is dry.  His version of "helping" is definitely that of a 4 year old!

Bryan and I got an early Christmas present for ourselves.  We got a new dining room table & chairs.  The set we had was given as a wedding gift and it was used long before that.  The chairs were coming apart and it was getting scary to sit in any of them so we splurged & got some new pieces.  WE LOVE IT!  I'm posting some pictures later in this blog but I won't have any of the table this time because it's too covered with cookies & other half-finished Christmas projects.  Definitely will get some up later because I want to brag about it :)

I'm working on getting our Christmas cards out.  That's a big job, but I do love sending and receiving them :)  Zachary's helped wrap a lot of presents and we've got them under our trees.  Yes, I wrote trees, plural.  We were pretty sure Eli would pull down our big one that we normally put in the living room so we bought a small, pre-lit white one and put it on a table.  We put a bigger one up in the dining room and he hasn't found it yet.  That's where the gifts for the four of us will go and gifts for extended family go with the living room tree.  So far he's left things alone but, frankly, I don't trust him.

Eli has been very busy cutting teeth.  His top front four are all in and he's working on molars now.  He had several nights of fighting sleep for several hours, but that's starting to improve.  Cutting those teeth has been hard on his body:  He's had loose stools, a runny nose, a cough, both ears are red and he just generally doesn't feel well.  Despite all that he's playing well and has mastered crawling in the past week.  His appetite has fluctuated as he hasn't felt well but he's trying lots of new foods and overall doing very well.  He's definintely on the mend now.  At his check up last week he weighed 20lbs 12oz.  When we're holding him on a sleepless night he feels like he weighs 45lbs!

Zachary has written his letter to Santa and his big wish this year is for Imaginext Dinosaurs.  Go figure, the kid wants dinosaurs.  I tried to explain Santa's naughty & nice list to him and I think he "gets it."  Occasionally he'll ask me which list he's on that day.  So far it's been nice all the way!  Even more important than Santa, he's really into the fact that Christmas is the celebration of Jesus being born.  I love hearing him say "Bethlehem," "frankencense," "gold," and "myrh."  Bryan & I can't believe that Christmas decorations are enough for Jesus' birthday.  We're still figuring that Jesus will need a dinosaur party and we'll have to incorporate that with our trees, but for now that idea hasn't occured to Zachary.  There's still time!

We go to see two of Eli's cardiologists this Friday.  At that appointment there will be more discussion regarding a pacemaker.  As we've said before, we're not going to stress over this.  It's something that will help him and at least we have an option for this problem.  We'll save our big worries for the problems that don't have any options.  I'll post again sometime after that appointment to let you know what we find out.

The four of us went to Washington's Christmas Parade yesterday.  We think it was Eli's first parade.  It was a good day for it, temps in the low 40's and it wasn't windy at all.  We had Eli bundled up like Randy from "A Christmas Story" but it's hard to keep those cheeks covered!  Zachary was nuts with excitement and we all had a good time.  When we got home we started decorating some of the cookies we'd baked the day before.  

 ~It's beginning to look a lot like Christmas!~

We hope all of you are enjoying the Christmas season and thanks for reading!

Our new tree in the living room.

Albert completing his annual "present sniff"

Our dining room tree

Some of the cookies we baked and decorated this weekend. 

Waiting for the parade to start.  I promise both boys had fun, Eli just didn't want to sit on the sidewalk for a picture!

Mommy & Eli waiting for the parade to start

Daddy & Eli all snuggled up

Excitedly waiting for candy

Part of Zachary's "The Parade's About to Start!" dance

Just in time for Christmas, Eli has become a pot & pan drummer

Some of Eli's crawling skills

Mamaw Betty helping Zachary write his letter to Santa

Zachary & Eli played in a laundry basket for about 45 minutes the other day.  The basket was a boat, a train, then a boat-train.  Eli had a blast with the special attention Zachary was giving him.