Wednesday, February 29, 2012

Echo Update

If you read the last post, you know we've been battling a stomach flu around here.  When Monday morning rolled around, I was pretty sick, so my wonderful husband took the day off work.  He was starting to feel bad himself, but he took Eli to Evansville for the echo and appointment with Dr. Kumbar.

Eli did well during the echo.  They only had to stop once because of fussing (I didn't ask, but I assumed it was Eli fussing and not Bryan).  Bryan said it helped that Eli watched Elmo's World while it was being done...thank goodness for puppets :)

Once at the appointment, an EKG was done.  That showed his rhythm is still junctional.  At this point, we don't expect his rhythm to change on its own, but we just keep hoping.  In a way, I'm happy to know that it's consistently been junctional and isn't changing from one rhythm to another.  That would be very rough on him. 

Since Eli has tolerated the junctional rhythm so well, Dr. Kumbar wants to restart him on Captopril.  That's a medicine to help increase his heart function.  He took it regularly after his first heart surgery, but stopped after the second one because of the rhythm.  He's done well since being off of it, but it's time for him to resume.  He needs the extra help. 

Dr. Kumbar said there were a couple things to watch on the echo, but these are things that have been seen previously and we were already watching.  One of those things is his mitral valve (valve between the left atrium and left ventricle) is leaking.  Again, this is something we already knew and will continue to monitor.

The big news of the day was his oxygen was 94%!  I don't know if it's ever been that high!  He usually hovers in the low to mid 80s.  Obviously, he wasn't sporting any bluish lips or fingers when that level was taken!

Overall, she's very pleased and Eli will go back to see Dr. Steinberg in June.  He's the one who will ultimately make the decision about when to proceed with a pacemaker and third surgery (Fontane completion). 

I've never missed any of Eli's doctor appointments or tests before.  Even though he was with his daddy, I hated not being with them and getting to hear the news myself.  Some of that is the nurse in me, but mostly it's the mommy. 

I think the four of us are on the mend.  Bryan stayed home today too.  He was feeling pretty bad by the time they got back from Evansville.  His stomach is better tonight, but just feels dizzy at times and has no energy.  That pretty much sums it up for all of us.  We can eat, but don't really want to (that's NOT normal for any of us!). 

Eli goes to Dr. Amy's this Friday for his Synagis injection.  If you're not familiar with that, it's a vaccination against RSV (Respiratory Syncytial Virus), a virus that is very dangerous for babies but especially ones who were premature or have other health issues.  It's a very expensive medicine, but well worth it when you compare it to the cost of a hospitalization or the risk of death because of RSV.  Last month we paid $4500 for his monthly dose (he's big enough now that he requires two vials...yea?).  This month, we've met his deductible and only had to pay $50!  Even better news is that he's approved for 3 more this season.  We thought he would only be approved through this month, so we're relieved.

Thanks for all the prayers and support since my last post.  We know everyone is dealing with a lot of issues of their own, and the fact that people continue reaching out to us is very touching.  I usually end these with a request for prayers, but this time I want you to know that I'm praying for you.  My prayer is one of thanks for caring about our family, for peace in your own lives, and that any struggles you're having are relieved.  Again, thanks for reading. 

Sunday, February 26, 2012

Stomach Bugs and Echos

This will just be a quick update and request.  Our house is sickly right now, Eli's been vomiting off and on for a few days and having loose stools.  I was supposed to work last night, but was put on call.  That turned out to be a blessing in disguise because Zachary woke up vomiting at 12:45am.  He kept that up through the night and I started early this morning.  We think the boys are getting better, but I'm working on getting to the "nothing happening, just feel lousy" stage.  Bryan is taking good care of us and doing a pretty good job!  Hopefully he can avoid whatever we've had. 

In addition to all that excitement, Eli has an appointment with his cardiologist in Evansville tomorrow.  He will have an echo before the appointment.  I always start to get nervous when he has one approaching.  I've been seeing little signs that tell me his endurance may not be what it was before.  His activity level doesn't seem to be what it was a few weeks ago.  At times, I think he's sleeping more.  Like I said, I usually do this before he has an echo.  This time, however, his physical therapist and speech therapist have had minor concerns too.  It makes me feel better that I'm not the only one seeing things, but it concerns me that others have concerns as well.  I'm hoping that maybe he's just not been feeling well for a while and will start to feel better after we get over this round of illness in our house.

Overall, he's still playing, being his usual happy self, and eating pretty well.  We just think we see some vague signs that may indicate things aren't going as well as they had been.  

With Eli, it's so hard to tell what's going on.  He had a rough January with ear infections, colds & tonsillitis, so maybe he's just having trouble getting over that.  Maybe it's just his body "preparing" for this illness.  Maybe he's having trouble adjusting to the milk we've added to his diet.  Maybe his heart function is decreasing.  Maybe he found an activity level he's comfortable with and just doesn't challenge it.  Maybe, maybe, maybe. 

So, that's our update.  Now, here's the requst:  Please pray for all of us to get over this stomach bug.  Please pray for Eli's echo to go smoothly (he's developed a severe dislike of medical personnel and their equipment, our last echo in Evansville should've been about 45 minutes but was over 3 hours).  Please pray for good results from the echo.

Again, thanks for reading and caring about our family. 

Friday, February 17, 2012

March of Dimes

We have been asked to be the 2012 March of Dimes Ambassador Family for Daviess County!  We are so excited to be a small part of this very important organization.  

Most people are aware of the tremendous work the March of Dimes does in relation to premature births, but they are also very active in funding research to treat and prevent birth defects.  Eli's future is dependent on medical advances.  After his third heart surgery, we wait.  The goal of his three surgeries is to make his heart as functional as possible for as long as possible.  That could be a few months, a few years, or a decade or two...we have no way of knowing, but we do know it's not long enough.  At some point he could be placed on the transplant waiting list.  It would be a last resort effort, not to mention an awful thing to wish for.                                                                                                                                                                    
Our hope is that research will provide breakthroughs in the field of pediatric cardiology.  Maybe a mechanical right ventricle will be developed that could replace or delay a transplant?  Maybe a new way of re-routing his blood flow that will be more efficient for him?  The possibilities are endless, but funding is not.  The March of Dimes is a well-known organization with a proven record of making a difference in healthcare.  

How does the March of Dimes affect you?  Have you had polio?  Probably not, because the March of Dimes funded the research that developed a polio vaccination.  After that was done, they turned their efforts to the prevention and treatment of premature birth.  Since then, their mission has expanded to improve the health of babies by preventing birth defects, premature birth, and infant mortality.

This has quickly become something that Bryan and I feel strongly about, and we are privileged to be involved.  Until we became involved with the March of Dimes, we didn't realize how instrumental they are in birth defect research.  If we, as a family who's been deeply affected by heart defects, weren't fully aware of the full capacity of the March of Dimes, then what does the general population know? 

            Our goal is to raise awareness of that side of the March of Dimes.  Our hopes for Eli lie in medical advances.  His first heart surgery was a procedure that wasn’t routinely done until about fifteen years ago.  What advances will the next fifteen years bring?  We also don’t want other babies and their families to suffer through the complex issues we’re facing.  The only way to find the cause and treatments for these and other defects, is more research.

            We started a team and called it "Eli's MVPs."  We are currently consumed with planning fundraisers to reach (and hopefully surpass!) our goal.  If you have any fundraising suggestions, please let us know.  We will let you know about different events as we plan them.  The conclusion of our 2012 fundraising will be the March for Babies Walk in Daviess County.  It is scheduled for April 14 --- that's only 57 days from today!!!  

             Please visit our team page and consider making a donation.  Thank you for reading and making time for us in your lives!  Your support is amazing and very appreciated!

Saturday, February 11, 2012

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 life and in death. 

Glen Michael Norris
02/05/48 - 02/11/04
♥ Love you and miss you, Dad! ♥