7 Months Old

That's right, we celebrate every month in this household so bear with us for the next five.  Here's a few snapshots of what our Little Missy is up to these days. 

Beating Up Fievel

Sitting Up All on My Own

I'm Going to Get You Camera!

Tolerating Some Tummy Time

Really Enjoying Standing Up

Hanging Out with BFF Daddy

Grabbing for Things Like It's Nobody's Business

Giving Back

Hi Friends and Family

As many of you know, our little family has much to be blessed and thankful for this year. To celebrate our appreciation we would like to give back to two organizations that have been crucial in Olivia’s health and treatment as well as alleviating stress off of Brian and I while we stayed at her bedside post-op Norwood & Glenn (Olivia’s first 2 surgeries). Those two organizations are the Heart Institute for Children and the Ronald McDonald House at Hope.

Many of you have asked along the way what you can do for us and here’s your opportunity. While she was hospitalized immediately post-op from the Norwood, Olivia spent something like eighteen days in the Pediatric Surgical Heart Unit at Hope Hospital. That PSHU as it’s called within the hospital was integral in helping her recover from her first surgery at just four days old. I had the misconception previously that there wasn’t a whole lot we could do for her while she was there hooked up to all the monitors, but they showed us differently. They can be dressed (so long as the right clothes are provided), wear hats, socks, fabulous headbands and bows for the girls, interact with mobiles clamped to their cribs, snuggle with stuffed animals and listen to lullabies played on the in room TV/DVD combo.

Our goal is to buy the following for the PSHU:

· 10 Boppy Pillows complete with a cover for each – it’s funny to walk into these rooms and see your little baby sort of propped up in a Boppy, not to mention therapeutic for the babies to get off of laying flat on their backs

· 10 Crib Mounting Battery Operated Mobiles for interactive stimulation -We need the high end battery operated kind because sadly the wind-up ones only last a couple of minutes and there’s not always someone around to sit there and crank them up for the little ones

· Receiving blankets, socks, front snap t-shirts in 0-3 & 3-6 mo boy/girl, hats, and hair accessories for baby girls

The Heart Institute for Children also includes the heart clinic that we visited frequently for Olivia’s checkups and Echo’s. They have a child-friendly waiting room complete with an entire library of children’s books as well as gifts that they keep stashed away to give out to patients as they’re visiting to give comfort and distract them through long echo’s (sometimes upwards of an hour depending on how calm the little one is)

We’d like to give the Heart Clinic:

· Children’s books – any and all age ranges

· Stuffed animals/toys

Last but not least-The Ronald McDonald House – they provided us with a room that was equivalent to a very nice hotel room and gave us home cooked meals each and every day. If we ran out of a toiletry they had a whole closet stockpiled with whatever we could think of just in case. There are families that have lived there on end for months and without such a place would be lost. We understand how important it is to be just a few hundred feet away from your baby because you never know when you’ll need to get back to them at a moment’s notice.

The Ronald McDonald House wish list:

· Queen sized white sheet sets

· White towels & wash clothes

· Pots & Pans

· Kitchen Utensils

· Toys (for their family playroom)

Any additional funds that may be leftover from buying gifts for the PSHU will go towards buying gifts for families staying at the Ronald McDonald house over the holidays. Many of these people are struggling to financially make ends meet with the downturned economy, usually the loss of one parent’s job to be near their child and then the additional medical expenses. Please do know that we have ear marked funds that were sent to us before and after Olivia’s arrival to donate them towards the causes above. Any and all contributions are so greatly appreciated, we simply ask that if you would like to participate that you please contact us prior to November 24th 2010 so that we have enough time to shop for everything and distribute prior to Christmas 2010. We realize and understand that many of you may be struggling as well so please do not feel obligated to participate if you will be stretched beyond your means.

Thank you all from the bottom of our hearts,

Brian, Lisa and Olivia

Lots of Tears and Jeers

Yesterday marked Olivia's first PT session with early intervention.  There were lots of tears from her - not that she was in any pain but her PT started off by doing the dreaded tummy time and then when Olivia got a little spooked, I didn't rush in to pick her up.  My mom still happened to be there while this was all going on and she had to leave the house just to avoid hearing her "Precious" cry.  It was pretty sad and when her PT (who was fabulous by the way) finally decided to comfort her, Olivia wanted no part of it.  In fact we only made use of about 40 minutes of the one hour session. 

The PT was very pleased that Olivia has made such strides since her assessment six weeks ago, but Brian and I have still been tasked with doing more tummy exercises.  Another focus is going to be getting her to get more comfortable with rolling.  We know she can do it, she just chooses not to.  One small plus side to her getting all worked up yesterday is the fact that she slept great last night.  As for the rapid breathing, I spoke with Cardiology and they put it down to the possibility of allergies or weather change.  If it happens again in a non-exercise setting I'm just supposed to double check her color and grab a pulse ox if possible.  To put everyone's mind at ease I did get a pulse ox yesterday and it was 90.  That's an acceptable number in my book!

Life with a Heart Baby

I know that I wrote about how Olivia hasn't really been sleeping well since her vaccinations two weeks ago today and that's a side effect that a lot of parents see regardless of healthy heart or not.  Olivia did not take her naps for us all weekend.  30 or 40 minutes here and there but no two hour snoozes like she normally does.  Brian and I made excuses for it saying that maybe she was just excited that we were home and didn't want to miss anything...except her eating was off and she was much crankier than usual the whole weekend. 

Last night was an example of how we don't have a baby with a completely healthy heart. She was up a lot which could have been because the house was warmer than she would prefer since we had a mini heat wave again this weekend.  I know Brian was getting her a bottle around 11:30 which was about two hours earlier than she should have needed one, but finally he threw in the towel at three and brought her in our room.  No big thing, I like when she has to bunk with us, but last night when he brought her in, I felt like her breathing was much more rapid than usual.  She'll have periods during the day when she's breathing heavier or faster but it's during phsyical exertion, not just trying to get in a comfy spot to go to sleep.  So I laid there and laid there some more until I was satisfied with the pace of her breaths, but you can bet that I'm going to call the cardiologist today and talk about the change in behavior over the weekend.

Maybe it's healthy baby stuff like teething (which we've heard she's been doing for weeks without a tooth in sight) but maybe it's something else and I'm not willing to overlook it just in case.

Rest Makes for Happy Family

We were on the move all weekend.  Saturday Olivia and I ran to get groceries while Daddy ran some errands of his own.  The last few weeks when we've been doing some serious errands, I have been wearing her in the Baby Bjorn facing outwards.  It's great for her because she gets to look and check out everything that's going on and more importantly it keeps people from trying to touch her when she's snuggled up against me.  So double bonus!

Sunday we had a playdate with a fellow heart baby from Hope.  Olivia and he were neighbors the entire time in the PSHU after the Norwood surgery.  I can't tell you how nice it was to sit back and sort of compare notes from the doctors - as all of our cardiology team are the same.  As a heart parent we have our own little language and when we get those few opportunities to get together it's just wonderful to talk shop without needing to pause for additional explanations.  Not that I mind explaining things to others, but no one understands quite like someone else in the same shoes. 

Overall the babies didn't really get much playing done together, one was always sleeping or crying while the other was awake and playing and then they would alternate.  But we did get some great pics of the two of them for the 20 or so minutes that they were both awake and they are beyond precious.  Here are these two little ones who together have had enough medical procedures to write a little book and they're growing, thriving and able to interact with one another.  His mom said it best when she wrote that "it was good for my heart" to see them playing together. 

Between the playdate and Uncle Sean coming into town for his fall break, we were so busy and I think that helped tire Miss Olivia out enough to get back on a better sleep schedule since her vaccinations last week.  This morning I was ready to hop out of bed before the alarm and that was sooo nice.  The weather is cooling off and the little missy was snug as a bug in a rug when I left.  Have a great day and week!

Rockin N Rollin

She's rockin and rollin folks.  By rockin I mean she's really doing a little jig in her high chair when Daddy cranks on "Friend Like Me" from Disney's Aladdin soundtrack. 

Rollin you ask?  Well that would be what Miss Olivia did last night when I laid her on her tummy.  She looked up at me and then next thing I know she rolled right onto her back.  There she laid for a minute with a complete look of surprise and then she gave me "Yep, that's right Mommy - you know I don't like laying on my tummy" sort of look.  So I put her back on her tummy and she went back and flipped on her back twice more.  Too bad Brian missed the moment and she wasn't cooperating by the time he got home. 

We have all weekend to play - today she even sat up completely unsupported by herself with a toy in her hands and balanced so well.  We're hoping that PT will start next week and then Livvy will really start making some strides especially with her upper body strength. This weekend our goal is to make sure she's good and tired each day from playing hard with us to get back in a better sleep pattern before this last round of vaccines.  They have really done a number on our poor little one and our sleep too! 

Healthy Baby Stuff

Yesterday was Olivia's 6 month appointment at the peds office.  I also thought it would mark her first Synagis shot for RSV prevention.  I knew that there would be vaccinations involved since we had missed the four month round due to prep for the Glenn.  I don't think I was anticipating an oral Rotavirus and four other vaccinations at once.  I know for sure Olivia wasn't prepared.  She was absolutely fine for the doctor as he did his exam and let the nurses do the weight and height without a problem. 

That's where the good disposition ended though, as soon as the nurse restrained her legs to start giving the shots, my poor Livvy went beserk.  I realize that in the scheme of things it is so far from the trauma of heart surgeries, but I was there holding her hand and felt like I was setting her up for the trauma.  She definitely had much more fallout from this round of shots than the last set; complete with muscle tenderness and a low-grade fever that has been managed by a few doses of Tylenol. 

She must be feeling halfway better tonight though because Daddy aka her personal entertainment center got her to sit on her own.  I mean completely on her own without a stuffed animal or anything else supporting her!!!  Time is just passing by so quickly now that we're hitting healthy baby milestones, I just want to press pause and savor the moment. 

Fantastic Friday

This morning we drove down to Hope for Olivia's cardiology check up.  It's crazy to think this is only the second time they've seen her since her Glenn.  All the grandparents, Brian and I had a little pool on weight and height.  So without further ado here's where she weighed in today at 6 months and 1 1/2 weeks. 

Height: 27 1/4" 90th percentile
Weight: 15lbs 13oz 50th percentile
Head circumference: we couldn't remember except that it's in the 95th percentile
Pulse Ox: 85-91

I was right on the money with the height and everyone was off with the weight.  Since she's got so many more rolls these days we all thought she was in the 16lb club.  I don't throw out the percentiles to impress - merely to show how far we've come post Glenn especially in the weight and head circumference.  Pre-Glenn Olivia's weight was anywhere from the 15-20th percentile and her head circumference was only in the 40s; her sats were usually in the 70's in the month leading up to the surgery. 

She is now officially off Lasix but we're adding baby aspirin back into the mix.  Since these heart kiddo's are more prevalent to get clots, the doctor feels that he'd rather be proactive.  Enalapril is still in the medicine mix and it doesn't sound like that's going to change for the near future.  When I asked about it today her doctor said that he'd like her to stay on it and as a preventative measure to keep the heart muscle from thickening.  I also took today's appointment to ask about planning for the Fontan and right now she's on pace to be about two before the third (and hopefully) final surgery.  We'll have at least one cath if not two before then. 

On our way out of the appointment we ran into Olivia's heart buddy - Jonah who is now 10 weeks old and looking soooo good.  It was wonderful to sit and talk with his parents about heart baby stuff like it was par for the course.  We also went and visited our friends at the Ronald McDonald house. 

Best news of the entire day?  Olivia is doing so well that we don't have to come back for three months...that's right NEXT YEAR!  After all the sad passings this week in the heart community a good checkup was most desired, but this was just the icing on the cake and we couldn't be happier.  I for one am relieved and my four day headache is starting to subside. 

The Best and Worst of People

Unfortunately it typically takes a tragedy or crisis to bring out the best in people.  Even sadder is that sometimes, those circumstances bring out the very worst.  Today another heart family lost their baby and I was really touched to see another Heart Mom who lost her baby earlier this week reach out to the Mom publically to share her grief and offer her thoughts of comfort and condolences.  On the complete other end of the humanity spectrum there were attacks launched on this poor grieving family questioning the type of medical care that they sought and undermining the decisions that they made for their child. 

While no parent chooses a life of medical or developmental challenges for their child, I think the vast majority of us do make decisions with the child's best interests in mind.  They are the most difficult ones in life, to seek the best medical staff or make the heart wrenching choice to forego treatment if the quality of life is nothing they would choose for themselves. (and of course everything in between those two extremes) 

I can only speak from our first hand experience with Olivia, but we try to weigh all the positives and negatives involved with making our choices when it comes to her.  Whether it be her care, what sort of food we give her, how and where she sleeps, you name it - we've probably put some thought into it.  Her heart anatomy is not within our control, but all the other variables that play into her general health are and we take our jobs seriously.  I imagine the same is true with all the other families out there who's blogs are linked to ours and within the heart community that embraces us. 

When we (the parents of a special needs or medically challenged child) make a decision that you don't like or don't necessarily agree with, just take a step back try for a minute to put yourselves in our shoes and think about how we have their best interests foremost in our minds.  Now that I've shared my two cents - I'd like to give a very special kudos to my cousin Mari who got her very first flu shot last week.  She totally doesn't believe in them but she proactively went out and got one because she knew it was a must to Brian and I for anyone that wants to visit and interact with Olivia.  I laugh, because for years she and I debated about them and now with Olivia she actually beat Brian and I to getting it done.  That's the perfect example of the type of support that we all could use a little more of in our times of need. 

Where are the birds?

When we moved into our current house a couple of years ago it was mid-July and the heat was sweltering so we sought shelter in the really nice A/C of our basement.  It was about 15 degrees cooler in the basement than we could get it in our bedroom without wiping out our monthly budget on a ridiculous electrical bill so we made a temporary room in the basement and moved up in the fall.  All was well until the first Saturday morning when we started to hear little chirps around 4am - by 5am it was like an entire flock of birds decided to have a coffee talk right outside our bedroom window.

Those pesky birds woke us up like clockwork every subsequent weekend at 5am until Brian got crafty and brought home some earplugs for us.  We used earplugs on and off the seasons as needed.  However that had to change once Olivia came home because our biggest fear has and always been that we wouldn't hear her if  she needed us.  So we've gone without our earplugs since April.  Just the other day we were talking and one of us said "What happened to the birds?".  Indeed, what has happened to those little pesky visitors? 

Answer:
This past Saturday I woke up really early and sure enough there were those birds right outside our window like they've always been.  Apparently the new parent fatigue has a little bonus...while we can jump out of bed even hearing a little whimper over the monitor our new parent hearing drowns out all the sounds that don't matter like our coffee talking birds. 

Neither Here Nor There

Forgive me if the following reminds you a little of Dr. Seuss

I am neither here nor there
I find that I do not really belong anywhere
You see my baby's heart is broken
"There is a problem with her heart" were the worst words ever spoken

This road is hard and filled with pain
We would do three surgeries and hope they are not in vain
Along the way we have made all sorts of new friends
This road is long, trying, yet joyful I can only hope that it never ends

Six months later she is doing so well
We have at least one more surgery to go so only time will tell
So many times we hear of little ones that were lost along the way
There are no words to express our sorrow for those families, I never know what to say

Our baby is here and seems to grow strong
Each day there is a thought in the back of our minds wondering "Will something go wrong?"
We see those with healthy babies that go home from the start
You can't help but be envious, even if it's just one tiny little part

We can make all sorts of plans tomorrow
But things can change in an instant and instead you're filled with sorrow
I have learned to savor the moments with those I love
For tomorrow they may get the call from above

I am some of the old and partially new
If you've seen and heard what I have you would be too
For a person so small
She has changed it all