There's an article in the latest People Magazine that talks about a little girl born with a heart defect: hypoplastic left heart syndrome. The writer of the article called the heart defect 'very rare'. I think 'very rare' becomes relative, depending on your circle of influence.
Hypoplastic left heart syndrome means basically that your child is only born with half a heart. It means that your child will undergo multiple surgeries to postpone the inevitable of a heart transplant. It means that you as the parent will more than likely outlive your child. The oldest living person with this heart defect is only in his 20s.
In my world, HLHS is the most common heart defect I see, and it makes me sad.
Over the weekend I went to a dinner that is held annually for heart moms.
There were over 100 women there, all who have had a child or children born with broken hearts.
Almost every person I met asked the same question: "Is your heart baby an angel or still living?"
I know of four little girls who have the same heart defect as Emily. All four of their mommies have been told that they have their daughter as long as they have her. There is nothing more that can be done for them, and that at some point they will lose their fight against their heart defect.
One mommy is facing that reality a lot sooner than she planned on.
At the dinner I sat at a table with three other women.
Two of them have had to bury their babies.
The other one told me that she is fully aware that at any point her son could lose his fight.
I just stopped typing this post to read a text from a friend, another heart mommy I met during Emily's last hospital stay.
She was letting me know that a sweet two week old baby girl is more than likely losing her own battle and my friend wasn't sure if she should go and give the mom a hug, or leave her alone for now.
As I looked around the room Friday night, and watched the faces of all of these beautiful women, I knew two things:
None of them asked to be a part of this group, and every one of them are fighting their own battles for their baby...fighting every day of their lives.
If there is a blessing in joining the heart mommy group, it's that every single day I find strength in these women who are fighting. I find joy in their successes, and I mourn with them in their losses. And I'm honored to associate with some of the bravest women I will ever know.
I've been writing a post in my head off and on all day long.
It was going to be a deep and heart felt post on guilt: the guilt I feel every single day of my life.
Somewhere mid post (still being written in my head) Jason and I were walking through Costco when we came upon some friends from our neighborhood.
Their very innocent comments about how our next baby will be a piece of cake, left me wanting to do nothing more than collapse in a heap of tears right there in the bread section.
And all at once I was slammed with every other emotion I've felt during the last few months: anger, sadness, fear, hurt, frustration, doubt, pain ... all of it was right there at the surface.
Later in the day I left Emily in the care of her daddy and drove out to talk to my mom.
My conversations with my mom, or any other member of my family are always the same, and they are hard and heavy.
In a way that is very uncharacteristic of my blogging voice, I've left out a large chunk of my life...of my family's life...that doesn't have anything to do with Emily's heart defect...it's not my story alone to share, and I respect that.
My family has a mountain in front of us...the largest mountain we've ever had to climb...and we've been climbing for what seems like forever...and there's not a single one of us who doesn't feel like we're at the end of our rope.
All of this was running on repeat through my mind as I snuggled with Emily before I put her to bed, and then took a long bath.
I thought of all of you, and of the strength and support you've given me, and honestly?
You deserve something more than another weary post.
Believe it or not, life before mountains and heart defects had a lot to offer me, and I still have stories to tell.
So for now I've decided to leave the hard ... all of it ... in the very capable hands of the therapist I am going to start seeing tomorrow.
There I go again...spilling it all on the computer screen in front of me.
I'm not afraid to admit that I need some help in dealing with the emotional baggage the last year has left me with.
This isn't to say that I'm going to stop talking about Emily. She is yours too, and I'm quite convinced she's the reason a lot of you come back day after day.
You Internet, have been my therapy for so long, but for now I am relieving you of those duties.
If you don't mind, I'll keep you as my number one backup plan.
Would you like to hear about the first time I fell in love?
I don't know if you'll remember this, but there was a time when Emily drank from a bottle.
It wasn't ever enough to give her the nourishment that she needed, but it was something.
And we were hoping to build on that something.
The thing we heard over and over again was that when Emily's heart was fixed she would have the strength to eat.
We didn't plan on the lack of blood flow to her gut causing recurring infections.
Recurring seems an understatement.
The treatment for the infection is gut rest, meaning nothing went into Emily's stomach for weeks.
And in those weeks Emily forgot how to eat...she fell out of practice...and she forgot that a bottle was the means to fulfilling her hunger...because she was never hungry.
When Emily was finally allowed formula again she failed her swallow study.
More of what she ate went into her lungs than went into her stomach...and she wasn't coughing, which was dangerous for our little lady.
The last thing we wanted was for Emily to get pneumonia.
Jason and I were frustrated, and we felt that without practice she would always fail her swallow study.
Months later when Emily finally did pass a swallow study, and we were given the green light to feed her orally, Emily had lost all interest in eating.
It's possible she lost the ability as well.
About the same time as the green light on a bottle, the nurse practitioner told me that they had stopped one of Emily's reflux medicines. She had been on two for most of her life and the NP felt that it was redundant to give her both medications.
I was happy with the thought of going home with one less medication to give.
We had been home from Emily's latest surgery/hospital stay for about a week, and had seen glimmers of success with the bottle when Emily started throwing up.
Every. Single. Day.
Sometimes it was more than once, but it was always once.
We talked with the pediatrician, I texted one of Emily's nurses, who has become a friend, and I talked with other moms.
We did everything we could think of.
We ran her feeds over a longer period of time, we changed when we gave Emily's meds to her, we made sure the milk was always warm, we tried skipping a feed in the morning, we changed the formula we were using...we tried everything.
Still, she threw up.
And the more she threw up the more she refused a bottle.
The two are very much associated.
We finally met with a GI doctor who told us she wanted to do surgery to prevent Emily from throwing up, but only after she ran a test.
That test was the reason for Emily's and Daddy's sleepover at the hospital a few weeks ago.
The GI doctor put a probe down Emily's nose into her esophagus, and the probe was in place for 24 hours, to test the level and severity of Emily's reflux.
The GI doctor called me a few days later and told me that the test showed that there was no sign of reflux and that she wasn't going to do the surgery.
"In fact, there is no reason Emily should even be on her reflux medicine," the doctor told me.
I was incredibly skeptical.
I've seen the results of other tests that showed damage to Em's esophagus because of reflux.
I asked the GI doctor if she was sure and she told me that she was.
I stopped the reflux medicine.
(The GI doctor also told me that she wanted to wait to do the feeding tube surgery...at least a few more months.)
Within 3 days of stopping Em's meds, our little lady was miserable.
With every feed she acted more and more uncomfortable.
Her throwing up increased and in addition, it began to hurt her.
She would cry and cry after every throw up episode.
On the fifth or sixth day I cursed the GI doctor and started the reflux meds again.
And for added measure, I started Emily back on the reflux medicine the nurse practitioner took her off of.
In the last seven days Emily has only thrown up once.
I don't know if I should be more frustrated with the NP or myself for not thinking of adding the other medicine sooner.
Or maybe I'll just be grateful that things are finally looking up.
And hope that the longer our little lady goes without the trauma of throwing up, the less averse she will be to fluid in her mouth.
Em's feeding therapist promised that Emily would eat birthday cake on her first birthday.
When you 'rent' medical equipment long-term you're likely to get a letter in the mail stating that your rent payments equal the total cost of whatever you are renting, and congratulations, you're now the owner of said equipment.
Free pulse ox monitoring at our house!!!
And now that I know this, I have schemed a plan.
Rather than call and say that we no longer need the ginormous oxygen concentrator we have, I'm just going to keep it in the closet and wait for another letter.
Have you seen the 2012 HGTV dream home?
Jason enters our names twice a day.
The winner of the home, the brand new car, and $500,000 will be announced soon.
My prayers have gone something like this:
"Please bless Elimy...and also? Please let us win the house."
If you want to pray that we win the house too ...
Guess what else...
Today when we gave Elimy tastes of baby peaches?
She opened her mouth, stuck out her tongue, and begged us for more.
I might have done a happy dance.
I've been trying to come up with something to do for Em...
My idea requires your assistance.
In honor of Valentines Day, Em's half birthday, and Congenital Heart Defect Awareness Week, would you all be darlings and send Emily a little Valentine note?
You can email it, or leave it in the comment section...but what I would REALLY love is a hand written note that I can put in a book for her.
Please say yes.
I'm not sure it's wise to post my address for the world to see, so if you're willing, let me know and I'll email you my address.
This week is Congenital Heart Defect Awareness Week.
A few months ago I didn't know this 'week' existed.
Up until just recently I wouldn't have known that 1 in every 100 babies born will have a heart defect. (I hope I remembered that statistic right.)
One of these years I will be that heart mom that knows all of the statistics...that makes cupcakes to hand out at the hospital...that is there as a support to other moms who have just learned that their child also has a CHD.
But not this year.
This year I'm still in what my friend, another heart mom, calls the 'muckety muck' of life with a CHD.
One thing is certain...
Every day that I spend with my sweet Elimy is a blessing - a miracle - and at night when that little lady of mine snuggles into my arms I silently thank my Heavenly Father for one more day.
This song was written by a heart dad.
It's beautiful, and totally worth the click you might have to make to be taken to YouTube.
It's 9:30pm and I'm in bed for the night.
As soon as I hit 'publish post' I'll turn my lamp off and sleep soundly.
All night long.
As I was leaving the hospital, where Emily and Jason are spending the night, the nurse confirmed what I already suspected.
It's not usually the dad who spends the night.
I smiled and thought again how grateful I am that Jason is not the 'usual' dad.
I am not always very good at telling Jason how much I appreciate him and all that he does for Emily and me.
In fact, I'm probably lousy at it.
But tonight I'll tell the world...or at least those of you in the world who read this blog...
Emily couldn't have a better daddy and I couldn't have a better husband.
And I love him.
We've come a long way since this day, and Emily and I couldn't have done it by ourselves.
***And for Leslie in California, thank you for caring about us. I truly appreciated your message! We are involved with an organization here called Kids on the Move. We have an occupational therapist who comes to the house once a week right now to help us with Emily's feeding issues, and when and if the need arises we have access to physical and speech therapists as well.
****And for all of the rest of you who emailed ... I promise I'm working on getting the help that I need too. I love all of you for your concern and love.
I'm not a snob.
I'm really not.
But I'm going to sound like one for just a second.
I've never purchased anything from a second hand store. Ever.
Until a few weeks ago.
I needed a new desk for my office, I didn't have a ton of money to spend, and I didn't want the traditional bulky office desk.
I stopped at a furniture store just to browse and realized I was next to a second hand store.
I went in and left 15 minutes later with a table that cost me a whopping $19.99.
I sanded it down to the pure wood and it's a beautiful table made of solid maple.
I've got one more coat of paint to put on, and then I'll show you the finished product.
That's not the snobby part.
Today I went to another second hand store, and I had Emily with me.
We don't take her out very often, for fear of germs and RSV, but Jason ran away from home for the day and I didn't have any other option.
The place was crawling ... crawling ... with people, and within two minutes I felt like I needed to sanitize myself and Emily from head to toe.
We walked in and turned around and walked right back out.
Forget the giant picture frame I was looking for.
Three hours later I still felt like I was covered in germs.
I won't be taking Emily to another second hand store any time soon.
Speaking of RSV, would you like to know something?
Emily gets a shot once a month for added protection against RSV.
She's had two so far, and will probably have two or three more.
Guess how much they cost.
Go ahead, guess.
Oh my honk.
Emily is going to spend Monday night in the hospital.
Happy 6 month birthday to her. 6 months!!! I simply can't believe it.
The GI doctor wants to recreate Emily's routine in the hospital setting and run some tests to see if we can find an answer to the current mystery: Emily throwing up every day.
Except that now we've had TWO ENTIRE DAYS of no throwing up.
Of course we do...that's how we roll.
I think I have Jason convinced that he and Emily need some bonding time, and that he should spend the night with her at the hospital and I should come home and sleep. For one whole night.
Wouldn't that be amazing?
We've reached a milestone on this Emily's six month mark.
Tonight will be her third night without using oxygen.
I'm a nervous wreck about it.
I keep the oxygen monitor on and check it pretty much every hour. Every time I go in her oxygen is between 93 and 94. I'm hoping that by the time Emily is one I won't feel the need to use the monitor.
Here's one final look inside our life.
Jason went snow shoeing. It's now 8:25pm and he is still not home.
I wasn't home when he left and he didn't leave a note telling me where he would be going, or when he would be home.
There are avalanche warnings everywhere in the backcountry right now.
Jason is pretty smart when it comes to the outdoors, but the man did almost die once in an avalanche.
I have a right to worry right?