Thursday, January 22, 2015

CHD Awareness Week Petition

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

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

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

Thursday, January 15, 2015

News from our Fetal Echo and Eli's ENT Appointment

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

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

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

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

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

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

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


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

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

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

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

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

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

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

Sunday, January 11, 2015

Questions, Updates, and a Couple Prayer Requests

Questions.  Normally I don't mind questions.  We all have them.  It's how we learn.  I like it when people ask about Eli's condition, especially when they want more information about the specifics of his heart or ways to help raise Congenital Heart Defect Awareness.  I like it when people ask how the boys are doing, how they're growing, how are each of them doing in school, etc.  We learn by asking questions and questions are a way to show we care.  But then there are other times when questions are inappropriate.  Yes, I realize the person asking may not realize the question is inappropriate.  We've all done that, myself included, but it seems that I've had many questions that I think are inappropriate since announcing this pregnancy.  {Just in case you're behind in our family news, we are expecting our third child!  Due date is May 4}  Many times I just want to answer "Nunyadambidness"  If you need that in plain English it's "None of your damn business."  However, I haven't given that specific answer to anyone yet because a) I'm too polite or b) I'm in too much shock of the initial question.

The following is a list of questions I've gotten in the past few weeks.  They're in unofficial order of my perception of what's been asked most frequently to least frequently but at least once.  Below the question is what I wish I had said/could have said followed by what I actually said or did. 

You must be trying for a girl?
What I wanted to say:  Why do you care? or Nunyadambidness.
What I said:  Actually we're just trying for a baby.  If we get to choose, we'd probably chose boy again.  How fun would life be with three boys in the house?  And since we already have a couple of them, we have a lotta boy stuff and a false confidence that we know what we're doing whereas with a girl we know we have no idea what we're doing.  However, we are mature enough to know that we don't have any say-so in the matter so we will take whichever God has for us.  As Zachary learned to say last year in school "You get what you get and you don't throw a fit."

Was this baby planned or was it an accident?
What I wanted to say:  Why do you care?  or Nunyadambidness.  or How is that okay to ask someone?  or Was that question an accident? 
What I said:  I really don't remember what I said, I'm pretty much in shock every time someone asks this.

Are you planning on more after this?
What I wanted to say:  Why do you care?  or Nunyadambidness.  or How is that okay to ask someone?  or Will we be in violation of some code I don't know about if we were to have more after this one?
What I said:  No, we're pretty sure this one completes our family. 

Aren't you a little old to be having another?
What I wanted to say:  Why do you care?  or Nunyadambidness. 
What I said:  No.  Probably.  Yes.  Depends on the day.  Neither of us were getting any younger and neither of us want to set any Guinness records for having a baby when we're older.

Are you doing your Kegels?
What I wanted to say:  Why do you care?  or Nunyadambidness.  or Do you really want to know the answer to that?
What I said:  Yes, as we speak.  (followed by an uncomfortable pause by the questioner)
***in case you don't know what Kegels are, they're squeezing exercises for women to do with parts they have that men don't.  If you need more info then Google it!

For weeks I wondered if I was just being too sensitive, too hormonal.  But I don't think so.  If it were my sister, a close friend, or someone else with whom I've shared private information those questions wouldn't bother me, but the people asking these questions are not close confidants.  I'm not someone who is easily offended.  Easily annoyed, yes, but you've really got to work to make me mad.  I wouldn't say these questions make me really mad, but it's getting close.  However, I do find the humor in it as well and just enjoy that.  Hope some of you find it funny.  And if you think you're one who has asked one of these questions, please don't be worried.  I probably don't remember who has asked what and if I do I'm not holding a grudge, just getting a laugh about it.

Another question, rather a statement, we often hear that I know I'm too sensitive about is "Well, as long as this one is healthy."  Of course we'd love a healthy baby, but what kind of hypocrite would I be if I said that was our first priority???  Honestly, healthy isn't what I've been praying for.  I've prayed for a happy baby, one that fits in our family just as seamlessly as Zachary and Eli each did.  I've prayed for my health (and sanity) as I deal with the normal pregnancy issues in addition to keeping up with Eli's needs and Zachary's needs.  I pray that I'm able to be there for three kids, to lead them, guide them, and spend enough individual time with each of them.  I pray that whatever this baby is like, we can accept and be prepared to take care of him/her.  But no, I can no longer pray for a healthy baby.  I can hope, but I can't ask God for that.  I don't mean to sound negative, I'm not thinking the worst and I don't have any "mother's intuition" one way or another.  I've just come to learn (maybe because I'm so old????) that I can't dictate that.  The plan is already made.  God knows what's in my heart, I just need to be ready for His plan. 

On that note, this coming Tuesday Bryan and I will be in Indy for a fetal echo and other testing.  Any testing we've had so far has given great news, but this will provide more information.  From what I understand the first part will be an echocardiogram (ultrasound of the baby's heart) by one of the cardiologists in Eli's Indy group.  After that a tech will take over and scan the rest of the baby.  Before we leave, a fetal maternal doctor will review everything and make sure they have all the images they need.  We should definitely have news about the baby's heart that day and I think we will have the other results as well but am not sure on that part. 

Then on Wednesday, Eli and I will be back in Indy for an appointment for him.  He has gotten an appointment with an Ear, Nose, and Throat (ENT) doctor for his recurrent ear infections and ongoing cold symptoms.  Of course he has no runny nose or cough right now and neither ear was red at his monthly check up last week, but this is easily the healthiest he's been since mid-August.  We expect the doctor may recommend placing tubes.  If so, that's normally a relatively minor procedure for most.  However, Eli requires some special considerations anytime we deal with anesthesia so his procedure would have to involve a cardiac pediatric anesthesiologist.  However, we haven't even seen the ENT yet so I'm probably getting way ahead of myself!

Prayers for safe travels both days would be appreciated.  Good news about the baby would also be appreciated but most importantly pray that Bryan and I accept whatever news is delivered.  Pray that the best path is figured out for Eli.  While we certainly don't want to put him through anything he doesn't have to have, he needs long-term relief from these recurrent ear infections.  We need to know what's causing them and treat the source.  And, a little selfishly, if something needs done, it would be easier on us to have it done before the baby comes.

Because of our busy schedule in the middle of the week, I may not post results from either appointment right away.  Please remember that no news doesn't really mean good news or bad news, we're just busy!  Thanks for the prayers and taking the time to read about us.  Remember to cherish Every Little Beat...