Charles Andrew to Arrive in August

We wanted to take a few minutes to update you on our current family situation. As some of you know, and some do not, we learned in early April that our unborn baby boy (Charles Andrew AKA Charlie) has a very rare and life-threatening congenital heart defect. Over the past few weeks we have seen numerous specialists to confirm and further detail his diagnosis. We have many more appointments to come and the upcoming months will continue to shed light on things for us. At this point our baby boy has been diagnosed with Hypoplastic Right Heart Syndrome including a Double Inlet Left Ventricle with Transposition of Great Arteries, Aortic Hypoplasia and a Ventricular Septal Defect.

In layman’s language it means that only 3 of the 4 chambers of his heart are functioning and at this point the vast majority of his blood flow is going to his lungs (as opposed to his body). Both of the atriums in his heart are dumping blood into the left ventricle – the the left ventricle is pumping blood to his lungs. His aorta, which pumps blood to his body, is too small and connected to a ventricle that is not properly functioning or growing. The good news in all of this is that to-date, he is thriving and growing as any normal baby would. He currently shows no signs of distress in the womb and has a healthy and steady heartbeat.

He will need several open heart surgeries in order for him to sustain life; the first of which will most likely be in his first week after birth. All of the surgeries and details are, of course, pending the (relatively) healthy arrival of baby boy come August. At this point in time we are still planning on a standard delivery but it will be with a high risk OB and at a hospital in St. Louis that is better equipped than our local regional hospital. The neonatal and cardiac medical teams will be waiting for his arrival in the delivery room and will immediately start him on heart medications, breathing treatments and nutrient IVs. We are told we will have a precious few minutes with Charlie before he is whisked off to the local children’s hospital NICU where he will await his surgery. Some tests will have to be rerun and new tests will be administered. Then we will have our final course of action and timeline. Assuming that mom can get up and moving relatively quickly, the hospital will issue day passes so Jean can visit Charlie in NICU in the days before his surgery and before her official discharge.

We know that after his surgery he’ll spend a period of time in the PICU before being discharged to home. We’ll be coming home with oxygen tanks, a hospital-grade pulse-ox meter, and probably a hospital-grade breast pump because it is very likely that Charlie won’t have the energy to nurse. We know our lives are about to change in many, many ways – but we’re grateful that we have such wonderful friends and family to support us.

Right now all we need are good thoughts and lot of prayers! As things or needs change, we will continue to keep everyone updated as best we can.

Thanks in advance for the love, thoughts, and prayers!

Jean, Matt, John, Nathan and (ESPECIALLY) Charlie

Nathan’s First Surgery

Today is Nathan’s first surgery.  Nothing big (or really scary), but unusual only because it’s Nathan.  You know!  My healthy child!  I joke that Nathan gets overlooked on the blog because he has hit his developmental milestones on time and has no major health issues. 

In a few hours we’ll be at Children’s Hospital waiting on a plastic surgeon.  Nathan has had a small lesion on the underside of his nose since birth.  Three years later we’ve finally decided it is not going away on it’s own so we are dealing with it.  We, personally, think it might just be a small wart that keeps resurfacing.  But Nathan tends to pick at it which makes it bleed like crazy for a few days.  It’s certainly not an eye sore as most people don’t even notice it, but we do not want to risk infection in the cartilage of his nose.

We saw a dermatologist about a 2 months back.  She couldn’t tell what the lesion was at the time because Nathan had just managed to knock the top layers of skin off when he fell and bumped his nose on the ground.  She told us that if it Nathan was an adult she would just numb the tip of his nose and cut it out in the office, but since two year olds don’t tend to hold still when we want them to – we were better off with a plastic surgeon.  And let’s be honest here …. this mom doesn’t want a scalpel anywhere near her son’s precious face when he starts flailing around in panic!

So today we’re off to the hospital for a quick ‘twilight’ anesthesia and facial plastic surgery.  They’ve got an hour blocked, but the surgeon predicted it would be less than 10 minutes from start to finish. 

In the meantime, I’m busy being thankful we’re close to family and have lots of friends!  Pawpaw picked John up at 6:30am this morning so that John didn’t eat or drink in front of Nathan.  And Pawpaw is probably dropping John off at school as I type.  Uncle Charles is picking John up from preschool and taking him over to a friend’s house for the remainder of the morning/early afternoon or until I can get home from the hospital. 

Seriously – how blessed are we to have friends and family that bend over backwards for us?!?!?!?

My Boys

Just a quick update on the boys here.  It’s hard to believe that I have a 4.5 year old and an almost 3 year old!  Seriously, where did the time go?

Both boys will be starting soccer in April through Happy Feet Soccer Club.  With a little support from the head coach, I managed to successfully get both boys on the same team.    John will be playing down a level into the 3 year old division which is fine with us because he’s a more than a little timid on the field.  Nathan will play up to the 3 year old division since he’s our rough and tumble child.  The will both be Lions this year wearing blue.  They seem excited (mostly about the prospect of wearing shin guards) so we’re excited for them.

John’s IEP staffing was last week.  It went surprising smoothly.  Almost to the point that I’m waiting for the ball to drop and things to blow up.  Although the general consensus was that from an academic standpoint John does not qualify for the PreK program in the school district, his need for regular peer interaction and intense speech needs outweigh the guidelines for enrollment.  We’ll take Nathan for his PreK screening the first week of May.  Hopefully he’ll qualify for the program as well (it helps that John is already in).  If everything pans out they’ll both start in August and I’ll have a newborn ready to arrive any day. 

Speaking of the baby, tomorrow is the 20 week ultrasound.  Yay!  I had a dating ultrasound about 4 weeks ago and they moved my due date up 8 days.  So middle of August it is.  Unless, of course, this ultrasound tomorrow changes things again.  For now though, the official due date is August 13 and I believe PreK is scheduled to start on August 14.  No problem, right?

Nathan is in the midst of the terrible twos.  Lots of crying and occasionally tantrums.  Although they seem to be short lived, the tantrums can drive me up the wall.  Really, his tantrums tend to be as simple as dropping to his knees and not wanting to stand back up.  This is fine as long as I’m not trying to run out the door to pick John up from school or attempting to get Nathan to gymnastics.  I’m surviving.  But there is no denying that Nathan’s lungs and vocal cords are waaaaay more progressed than John’s were at this age. *sigh*

Going Strong

The process for moving the playroom downstairs is moving forward.  It’s a slow (and tedious) process, but we’re trekking along. Most of the successes of the past week seem to be based in this task, so here they are…

1.  Finally called the electrician to get power dropped on the far side of the basement.  We also need a few other little electrical things done so hopefully we can officially check those off the list soon. 

2.  Having spent so much time in the basement recently has prompted me to get way more laundry done than before.  I figure if I’m down in the basement I might as well throw a load in.  Low and behold, there was actually one day when all the laundry was done!  I’ve even gotten some of our spare pillows washed.  Yay! Maybe this will be one of those long-term perks of having the playroom in the basement.

3.  We’ve continued to purge toys.  Seriously – how many remote control trucks do two boys need?!?!?!  I’m shocked at how many toys we have acquired in just 4.5 years.  Granted, we’re not great about parting with outgrown toys (because thus far there has always been another child on the way), but I am committed to NOT having 12 of everything in this house!! 

4.  Spent one day making tons of phone calls.  I don’t know how the list of people to call grows on me – but it sure does.  Nonetheless, we now have a free family portrait session, ENT appointment, hearing test, and dermatologist appointment all scheduled. Now, we just need to actually make it to those appointments…..

5.  Bills are paid for the month.  It’s always nice when that is checked off the list.  And since I got everything paid and all the books balanced…I caught an accounting issue.  Good news – it’s in our favor!  Matt’s boss forgot to forward his January expense report to the main office for reimbursement.  So this month we’ll be getting an extra reimbursement check (for a pretty hefty chunk of money!).  We’ll be able to tuck some of that $$$ into our savings for our upcoming vacation in May! 

Bottom line – productive week!  Keep on going, keep on going, keep on going…. 

Maybe if I keep plugging away – we’ll be organized enough to have a new baby in August!

Solo Survival Success

This week Matt has been on the road.  He left Sunday afternoon.  Anticipated return home is Friday night.  Meaning: I’ve been on my own this week.  That in and of itself feels like it should be a success sometimes! 

But moving onto this week’s successes…..

1.  This week was super busy with lots of appointments.  I can honestly say that to-date, we’ve been on time (or early) for every.single.one.  We’ve met friends for coffee, had meetings, an ultrasound, a doctor appointment, speech therapy sessions and three gymnastics classes.  Phew!

2.  Despite Tuesday being our busiest day of the week – I managed to cook dinner at home.  (Let’s not talk about the rest of the week.  It’s been a week of eating on the go).  But Tuesday was a success.  I made Table for Two’s crockpot Beef and Broccoli.  Quite good!  The boys enjoyed it and it was the perfect amount for the three of us.

3.  I seem to have mastered the nap time battles (at least for the moment).  I’ve been allowing both boys to lay in mommy’s bed and watch one 30 minute TV show.  Then Nathan heads off to his bed on his own accord and John sleeps in my bed.  Sometimes I nap with John, sometimes I sneak out to get things accomplished around the house.

4.  I’ve continued our quest to clean out the basement.  Another two bags of trash and a giant pile of recycling at ready to depart the house on appropriate days.  I also have a large bag of items to donate and a few items that I need to sell.  Purging feels good!

So there you have it – a week of surviving on my own.  Complete with appointments, activities, and a little bit of crock pot cooking.

Accomplished

Small Successes – I come and I go!  But I really do LOVE the concept.  I love counting up those little things each week and celebrating the (sometimes) mundane.

This week is full of success!  So let’s cut to the chase….

1.  After spending a day in the basement rearranging, purging and organizing, I’m happy to say I feel like progress is being made.  Slow progress, but progress nonetheless.  Seriously, why do we still have three old mainframes that we haven’t used since at least 2008? (And that’s the most recent one…let’s not talk about the one I have from when I was in college)

2.  I have already taken a load to be donated and dropped it off.  Yay for clutter out of the house!  And double yay for my clutter blessing someone else.  That’s what it’s all about!

3.  The previously mentioned mainframes, an old printer, and a keyboard that still has an PS/2 connector are already loaded into the back of the van (Thanks Charles!).  Tomorrow is an electronics recycling day downtown so I’ll be headed there to drop off all that too! 

Pretty excited about the progress being made!  Getting rid of clutter makes me sooooo happy.

February…and the winds of change are blowing in

Ahhh…February….that time where you start to see tiny glimpses of spring in the future.  You know, that random 65 degree day or the fact that it’s not pitch black both when you wake up and tuck the kids in bed.  It’s amazing what those little “looks ahead” do for my mental state of mind.

Last night I found myself daydreaming of the garden plans for this year.  Marigolds by the lamp post again (last year’s attempt at something different didn’t do it for me).  We’ll certainly need basil, cilantro, strawberries, and maybe some cucumbers this year.  And I’m trying to figure out if we can transplant our surprise lilies to a different location this spring (preferably one where my husband won’t view them as weeds and run them over with the lawn mower).  Hmmm….is it too early to be thinking about such things?

Also in my daydreams are playroom storage, design, and functionality.  We’ve been in cleaning/decluttering mode around here recently – which I always seem to associate with spring.  We’re in the process of moving our playroom downstairs, Matt’s office to the other side of the basement and attempting to find a way to separate the two as best as possible.  This is a process.  I’m thinking it may take all spring and a chunk of early summer.  But slow and steady will win the race….AND – I can guarantee that it will be done by August.

Why? Well, because in August we’ll be needing the current playroom to serve as a nursery.    Yay!  Garcia baby #3 should arrive in mid to late August 2013. 

So there’s the big news!  Super excited!