"I love you and want for you all things that make you happiest; and I guess you, not I, are the one who knows best what those things are."

Tuesday, July 30, 2013

Things Are Getting Real

It’s amazing what a week can do to your mental state.  Last week I was in my “straighten the house, arrange for babysitters” state of mind.  This week I’ve moved into total panic.  My brain is screaming “NOTHING is ready for baby!” 

I spend a great deal of my day self-talking myself down from the ledge.  All will be fine.  If there are still clothes that need to be put away on the couch when Charlie arrives, it will be fine.  If the dining room table has some papers and toys on one end, it will be fine.  This too shall pass.  I know this.  But my brain still wants the whole world to be ordered before we bring a new baby into this world.  Smile

At the same time, sleeping is getting tougher.  I’m waking up repeatedly to go to the bathroom.  And a few nights ago I had my first very real, very legit nightmare about Charlie’s arrival.  I woke up in a sweat with my heart racing.  It’s probably to be expected under the circumstances, but it messed with what little sleep I’m getting these days. 

Matt describes the situation as a giant roller coaster.  No matter how much people describe it’s twists and turns…no matter how much you think you’re ready…when that last car clicks loose of the chain at the top – there is no turning back.  And you have to experience it first hand to fully understand what others are talking about.

I simply describe it as being pushed off a cliff.

Not sure which is more appropriate….but I know that we’re as ready as we’re going to be…

Sunday, July 28, 2013

Charlie Update (Week 36)

Charlie continues to thrive in utero.  That’s always the most important.  At 35 weeks we had our last appointment with the cardiologist until Charlie arrives.  Dr. Peterson was very happy with Charlie’s state.  There didn’t appear to be any valves leaking in his heart and she couldn’t identify any fluid build-up around the heart (a sign of heart stress/failure).  The only lousy news from the cardiologist is that it appears that Charlie’s ventricular septal defect (VSD) is probably getting smaller.  In a regular situation – doctors would literally be rejoicing and celebrating!  In Charlie’s situation it creates an environment where his blood flow to the body will be even more limited than it is already.  The good news in all this is that the doctors know about his defects ahead of time and he will be given drugs immediately upon birth to keep his blood flow as stable as possible.

At the last doctor’s appointment there also seemed to be some discrepancy in how much Charlie weighs…a few weeks ago we were told he measured 6 lbs 9 oz, but at week 35 he measured 5 lbs 13 oz.  My OB certainly doesn’t think Charlie is losing weight – it’s most likely user error in the measuring.  Either way he’s over the 5 lb mark which is vital.  And he still has a few more weeks to go! 

Mom is doing well too.  I’ve no signs of pre-term labor.  Contractions are occasional and mild but I’m not progressing at all.  I’ve got very little swelling (no cankles here!) and aside from feeling big, pregnant and hot during the summer…all is good.

The current plan (subject to change at any moment) is to induce in week 38.  We don’t want Charlie to have any distress in the womb.  Plus everyone is trying to control the uncontrollable by having the doctors who have been working with us at the delivery.   So it would be ideal if Charlie was born between M-F, 8-5 on a day that Dr. Vlastos is available to assist with delivery and with a long enough labor window for the Cardinal Glennon team to arrive at St. Mary’s Hospital prior to Charlie actually being born.  Anyone who has kids knows that this is like asking for every star in the universe to align….Kids are never this predictable. 

Please continue to pray for us as we navigate this process.  We’re excited to welcome Charlie into the world, but also battling the feeling that his arrival will feel much like being pushed off a cliff.  Fear of the unknown seems to be the worst….

Wednesday, July 24, 2013

Nesting

It’s that time in pregnancy when I can see the end.  Which also means I feel as though there is a looming deadline for all the things I want to accomplish before Charlie arrives.  Why does the list always seem to be longer than the time left? 

We’ve got the basics finished.  The crib is set up, the dresser is in Charlie’s room, and I finally washed some baby clothes this past weekend.  There is more than enough food in this house to feed my family for a few days. 

If Charlie arrived this afternoon we could survive.  But there are still lots of things to accomplish.  Not the least of which is to pack a hospital bag.  (My OB told me to do this back at 32 weeks – I’m looking at it as if Charlie won’t arrive until I do it so there is no need to rush things along.) 

Other things include finishing laundry for Charlie, getting all those clothes into his dresser, and doing some general cleaning and organizing.  We’d also like to finish up some yard work, wash the windows inside and out, and clean out a few closets.

So, who wants to come over and help us out?

Tuesday, July 23, 2013

What John Knows

*While mom and dad are at the hospital it’s going to get dark.  He and Nathan will have to stay the night at Grandma and Grandpa’s.

*Baby Charlie will have to be in the hospital.

*Charlie has a hole in his heart.  The doctors will fix it.

*Charlie might have to be fed in his tummy (g-tube) like Baby Jax (a friend).

*Charlie will be born in August.

*Babies eat baby food.

*Charlie like bottles and milk (and watermelon – but he can’t eat that).

*Charlie is in mommy’s tummy and sometimes he kicks mom.

*Charlie will be born in the middle of the night.

*Charlie likes going inside restaurants.

…and that’s it!

Monday, July 22, 2013

I Don't Know How You Do It

Over the past few months as we've shared Charlie's story with friends, family and acquaintances - we have encountered any number of comments.  Some are as simple as, "We'll pray for you,"  or "I'm so sorry."  Many relay stories of friends/family who have "been there and done that" and assure us everything will "work itself out."

One of my favorites is, "Let me know how we can help."  I normally joke back that they shouldn't make idle offers because we are making a list of people who volunteer services.  But honestly, I'm not really joking....we've got your name and number if you've said that to Matt or me in the past 4 months.

The comment that boggles me the most is when people say, "I don't know how you do it."  Really?!?!?  What choice do we have?  We have two other boys at home and one on the way that is going to need lots of extra attention.  It's not exactly fruitful for anyone involved for Matt or I to curl up in the fetal position and give up.  Matt has to continue working to earn money for our family and maintain our health insurance.  Last time I checked my 3 and 4 year old are not self-sufficient and can't adequately cook, clean, and transport themselves around town.  So we go on...

(For the record - I think all these comments are well-intentioned)

Some days are better than others.  Yesterday, I was in a funk.  Emotionally charged.  Drained from having 'kept going' for too long without a break.  (Matt was out of town for nearly two weeks straight).  So I cried.  I said out loud that I was scared.  I'm overwhelmed at the idea of balancing two toddlers in preschool and gymnastics while tending to an extremely fragile baby in the hospital.  More so, I'm trying to figure out what we'll do with this fragile baby when we come home - and no longer have some of the highest paid babysitters (doctors and surgeons) checking on him all day.

But the point is - We're Doing It.  All of it.  The good, the bad, the muddled mess in between.  We're blessed that we have a great support system.  We have friends who are willing to babysit.  Family who has trekked along to doctor appointments to serve as extra sets of ears.  Office mates who have sent special onesies that will accommodate all the cords, wires and pumps that will be hooked to Charlie in his early months.  Those friends and family are doing it.  This is going to be the epitome of 'It Takes A Village.'  We're learning to embrace that!

I Don't Know How You Do It  - If we don't, where would that leave our children, our family, our marriage?

Sunday, July 14, 2013

Leaning

I'm a fairly independent person.  Matt is too.  We've learned to lean on each other but even that was a process.  Something that we still work on actively in our relationship.

Now we find ourselves in the unique situation of needing to lean heavily on many, many people.  We are forced to find babysitters several times a week so that I can attend doctor appointments,  ultrasounds, and non-stress tests.  It would be different if these we standard OB appointments or a regular ultrasound, but they are not.  My OB appointments can last anywhere from 15 minutes to an hour.  The ultrasounds take between 30 minutes and an hour depending on if Charlie is cooperating.  The non-stress tests have been as short as 25 minutes and as long as 1 hour 15 minutes.  These don't even count travel time, wait room time, etc.  I've been gone for as little as 3 hours and as long as 8 hours.  How to do tell a babysitter I may be home by noon? or 5pm?  or some time in between?

We've had plenty of people offer to watch the boys.  Yet, I struggle to ask them.  WHY?!?!?  They've offered!  But for some reason I can't bring myself to pick up the phone and ask them.  I don't know why.  I've spent the last 4 days thinking about calling back someone who called this week and offered to take the boys for a a few hours so that I can have some quiet time.  She called me and offered!  The day she offered didn't work for us (the boys were already set up with a different babysitter that morning), but we spoke briefly and she told me to just pick a day and let her know.  I know what day is open and would work for us.  I have a second day where I still need a babysitter.  Either day would work - but I can't get myself to call her back.

How do you learn to lean on people?

Tuesday, July 9, 2013

Finding A Balance

It's hard to find a balance right now.  We're running from doctors' appointments, to speech therapy, to counseling, to gymnastics, to soccer and still trying to fit in family time and general prep work that comes with bringing home a baby.

Two nights ago the kids and I painted a dresser until 9:30 pm and Matt finally finished mopping the floors at 10:30pm.  Last night we managed to squeeze in the much anticipated trip to see Monster University, but that meant that I was doing touch up work on the dresser at 10pm.  We've been tucking the boys into bed later (partially due to summer daylight and partially because our evenings are sneaking away from us).  While normally these things wouldn't seem so big - it makes us consider what life will look like when we're trying to maintain some semblance of our current family life while having a baby in the NICU/PICU.

We've decided that keeping the boys in soccer is fruitless.  They aren't particularly attached to the sport.  Nathan spends more time laying in the middle of the field hoping the coach will pick him up and throw him in the air than he does actually playing.  John enjoys it, but is most interested in the goalie position (not running) and they don't really have a goalie at 3/4 year old level.

Obviously we will be keeping John in speech therapy as much as possible.  Luckily his private speech therapist will work with us on scheduling things.  And at this point there is little doubt that we will continue with the counseling for our family. Doctors' appointments aren't going anywhere - if anything they'll be increasing....

So the one that remains up in the air is gymnastics.  Both boys LOVE their gymnastics class.  LOVE.  The look forward to it every week.  They giggle with glee when they see their "coach."  Both boys subject us to constant "watch what I can do now" moments throughout the week that all stem from gymnastics.  However, the gym is 35 minutes away plus the hour and a half we're there.  Making gymnastics a three hour event once a week.  And it's not the cheapest endeavour they've chosen thus far.  

We flip-flop (no pun intended) on gymnastics all the time.  One could easily say that the money is better saved until we know where we stand with Charlie.  The time commitment is too much.  We don't want to have to take Charlie out in a germy gym once he comes home.  But the other side of our brains tell us that our older boys need the structure.  They need a physical outlet for their stress and emotions.  They deserve to have something 'normal' in a pretty abnormal situation....

So how do you decide???  Decisions have to be made though.  Sign ups for gymnastics are rapidly approaching.....

Saturday, July 6, 2013

Annual Tradition - Lake Geneva, WI

We've really come to look forward to June each year.  For the last several years we've spent a long weekend in June at Lake Geneva, WI.  Years ago my dad was appointed to an Illinois State Bar Association committee and the ISBA holds their annual conference in WI...weird, right?  But it's a nice little resort town close to Chicago and since people in Chicago think they own the whole state - they pick the location.

The conference is super family friendly complete with a carnival kick-off and kid's camps/activities scheduled each day for while the adults are in meetings.  As if that's not enough, the hotel that hosts the conference has a private waterpark with two great kids areas and lots of water rides for all ages.  My parents have been gracious enough to let our boys tag along on these trips the last few years.  Now, they spend most of the year talking about the next time we go to the waterpark.  So much so that this year when we got ready to leave, John had to run back inside to get last year's room key to the hotel (I guess he was worried we wouldn't be able to get in our room?  Seriously though - what 4 year old keeps track of a room key for 365 days?!?!?  Most days he can't keep track of his sippy cup!!!)

We had some rain on this trip, but it didn't keep us from accomplishing all our favorite activites.  We spent time at the waterpark, ate at some of our favorite restaurants, and toured the lake on the mailboat!  John mastered all the waterslides he was big enough to ride on this year.  Most the time he didn't even need mommy at the bottom to catch him.  Nathan even got going on a few of the slides.  Despite not napping most of the weekend the boys were very well behaved and even sat through the 2.5 boat tour of the lake.  Although it probably helped that there was a mailman jumping off the front of the boat, running down the dock to the mailbox, tossing mail in the box and then sprinting back to the still moving boat in an attempt to jump back on to the back of the boat before it pulled away.

This year on the way home we swung out to the Jelly Belly warehouse (something I've wanted to do since I was a kid but my parents never indulged!).  The boys loved it!  Jelly Belly's galore!  And as a side note - if you've never had a red apple Jelly Belly - get on it!!!

Here's some of the photographic highlights of our trip!





Friday, July 5, 2013

Weekly Testing

Back in April I never would've guessed that I would know so much about the human heart. Yet, I find myself grossly aware of the vast knowledge I have compared to my friends. Until last week I didn't even know what a nonstress test was. I certainly couldn't tell you what a biophysical profile measured. And again - I'm suddenly feeling ridiculously versed in these prenatal tests. *sigh*

Today I've already passed the biophysical profile. That's just a fancy medical phrase for ultrasound. Specifically it's an ultrasound that measures 4 things: amniotic fluid levels, movement, breathing and muscle tone. The fluid is measured in four quadrants, the 'breathing' has to occur for at least 30 seconds, Charlie has to move at least 3 times and he has to be in 'typical' baby position for tone (i.e. curled up with clenched hands and chin on chest).  He has to accomplish all these things in a 30-minute window. Today my ultrasound took about 10 min from start to finish! Good work Charlie!!

So, now I lay here, in an uncomfortable recliner at the hospital, hooked up to monitors, waiting for Charlie's heartbeat to accelerate by at least 15 beats per minute for at least 15 seconds twice in 20 minutes and he has to do that successfully within 60 minutes. Did you catch all that?  Yeah, took me a few times reading it through to get it all. That's the nonstress test. Thus far Charlie doesn't appear to be cooperating as well with this test. The nurse seems to think Charlie is asleep. I've been encouraged to drink ice water and have finished at least 20 ounces in the last 15 minutes. The nurse has also given me graham crackers to snack on and generally poked Charlie several times.

If things go well, the test takes about 25 minutes from start to finish. I'm at about 35 now. 45 now. *sigh*

It's known that heart babies tend to be lousy nonstress test takers (I mean, come on!, by definition their tickers are malfunctioning on some level) but they should still see increases and decreases in heart rate. So I wait - 50 minutes now.

Enough with the posting - I'll update when I get home.
Prayfully with great news...

UPDATE: Finally got released at 4:15 pm!  Charlie passed the test with 3 minutes to spare...so I'm home now.  Took a quick nap, ate dinner with my boys and worked at checking a few things off the never ending to-do list.