Here's to Good Health!

We're celebrating 4 months of good health for Rosie.  You can't ask for more than that.  I've realized that I'm just now catching up on some things that I wasn't able to do when Rosie was first born.  It's taken a while, but she's doing everything a normal 16 month old would do.

There are a lot of adjustments in the beginning.  You just have to learn not to expect anything to be "normal" right off the bat.  It takes a while for you and your family to adjust and understand what it means to have a child with this type of disability.

A reader asked to know a little more about our family adjustment.  Most of it is your ability to roll with the punches, and just do whatever it takes to get through each day.  There were many days filled with frustration, tears, and fears about the future.  The best thing is to have a supportive ear and to stay strong for your baby.  Do whatever it takes to stay positive and know that the ripples will fade and the waters will become smooth again.  

It's very easy to feel shattered by the overwhelming nature of what having a baby with HLHS actually means.  There's a long learning curve, it stretched out for about a year for us.  You learn how to deal with your ups and downs, you learn when to go tot the ER, you learn to trust your instincts.  That may be the most important thing of all.

Don't let go of your hopes and dreams of having a care free lifestyle.  Sometimes it takes a little longer than you think, but you'll get there.  If you have supportive people around you, you'll find that picking up the pieces is a lot easier.

Your focus should be on taking care of your baby, let your friends and family do the rest.  Do your best to find patience and learn that all of the uncertainties will work themselves out.  Surround yourself with love and don't try to be a one man band.  Rely on those that can help you.  

Remember that resisting the hardships of life can do more harm than good.  Be fluid like water.  It's peaceful enough to run your hands through, but strong enough to move even the biggest boulders from the river.  It's a journey, that's for sure.  Trust yourself and use the resources that you have.  Your boat will still float if you stop rowing, sometimes you have to drop the paddles and just sit.  It's harder than it sounds, but it's helpful.

Go Rosie!

So we did it.  We had Rosie's G-tube surgery July 21.  She's doing great.  Things have settled to the point where we're finally starting to look around and say, "Okay.  This is nice, Rosie is sort of on cruise control, curb your enthusiasm, but jump for joy."  I so wish I hadn't waited this long to do it.  There were some complications during her first 8-9 months that meant she was getting fed through an NG tube.  Then I convinced myself that I was going to be able to get her to eat the 1150 calories she needs a day to get her off the NGT, thus preventing this G-tube surgery.  It just didn't happen like that.  And believe me, after 2 cardiac surgeries, you don't want ANYONE or ANYTHING to poke or prod your little one any more than is medically necessary.  But, she had it done and she's so much happier now and making so much more progress.  It ultimately was a better decision for Rosemary. It feels a little more normal now.  She seriously looks just like any other baby.

Rosie took her first steps yesterday!  She is officially 13 months and 18 days.  She has been so much more playful and popping with personality since this last procedure.  I feel like everyday is exponential to the last.  Her Early Intervention doctor said that she is developing right around her age level, physically and cognitively.  And for what's she's been through this year and the amount of time she has spent in a hospital bed...she's doing amazingly well!  She couldn't get over how much she has progressed.  Hearing that is like a free gift.  

Life is good.

So far, so good...

When you have a good day, it's really an incredible day.  

The Roller Coaster

When you hear about someone's experience with a sick infant or child, your heart breaks and all you think is, "I don't know what I would do."  I remember when I heard the doctor say, "Your baby has something called Hypoplastic Left Heart Syndrome."  I thought, "What the hell is that?"  I was devastated because I understood what they were explaining about the physiology and anatomy of her heart, but I had no idea what it meant for the long term.  They began to tell me that the left side of her heart would be severely underdeveloped and that it would take 3 major open heart surgeries to repair it.  I sank, everywhere.  I was talking through the tears.  Even though I was trying to put focus toward finding answers, my brain knew that I was at the beginning of the world's longest emotional roller coaster.  I wanted to take on whatever it was that was supposed to happen to her and literally give her my heart.

There is really no way to prepare yourself for this type of thing.  You just have to know that it's going to be what it will be, no matter what you do.  Ground yourself with some positive people and hang on.  Looking back, I don't know how I got through it, but I did. Some days you feel like you can handle everything, and as soon as that thought gets out, your crying again.  I remember being a total mess for the first 48 hours after my initial sonogram.  I couldn't open my mouth without crying.  But once I accepted that this was going to happen to my baby, I just tried to figure out what everything meant; medically for the baby, for the family, for our future.  If you try to anticipate and plan for the unexpected, you'll run yourself into the ground. Just be. Live for that day. Live for the health of your baby, one day at a time. There are going to be ups and downs.  Soak up the good days and just swear at the bad.  Some days it takes the wind out of your sails and there isn't any energy to get a glass of water.  But you plow through it.  And before you know it, a year will go by and you'll feel like you blinked.  And here I am, with Rosemary, and we're all okay.

In retrospect, here's what you can try to do:

1.  Educate yourself with as much information from your doctor and reputable hospital's websites.  

2.  Take each day, moment by moment, and try to comfort your baby and yourself.

3.  Know that life always works itself out one way or another, look for the good.  

4.  Find support.  There are non-profit organizations like Little Hearts that connect you with other parents of these babies.

5.  Have faith and constant positivity.

6.  Find peace somewhere.

7.  Try not to focus on negative outcomes.  Every baby has its own destiny.  Believe in the positivity of yours.  That too has an impact on your baby.  Instead of planning on disaster, plan on what to get her for graduation.  

8.  REST!  My God, REST!  Having a baby is hard enough.  Just sit down, and let someone take care of you.  Your baby is going to need you, so go easy on yourself.  Rest.

After about 2 months, I stopped.  I stopped anticipating the day she was going to arrive because I didn't want to think about how difficult it was going to be to watch them wisk her away without getting to hold her.  I stopped worrying about what was going to happen in surgery because we hadn't even had her yet.  I stopped doing everything other than what it took to get through each day.  I have 2 other children, ages 9 and 2 and I just couldn't detach myself mentally from what they needed from their Mom and who they needed me to be.  You just can't expect yourself to hold the fort down AND deal with all of the emotional baggage that comes along with anticipating the arrival of a cardiac baby.  It's absolutely ludicrous.

 

It wasn't easy trying to be exactly what everyone needed 24/7, my fiance encouraged me to stop having such stupendous expectations of myself.  You really need to lean on the people in your life who are willing to help you out.  It does make a difference in your energy levels that are truly necessary here.  It's going to be a crazy ride at first, so take care of yourself.  It will all even out, you will be okay.  Trust in the good and hope for a beautiful baby that will look up to you someday and say, "Thanks for going on this ride with me."

To G or not to G, that is the question.

Today began with another episode of changing Rosemary's NG tube.  It's not a fun experience for either of us.  Her 11 month birthday was yesterday and I had one of those moments where you can hear the "V8 plunk." She's had a tube in her nose, taped to her face for 11 months. We've been avoiding getting a G tube placed into her stomach for a while.  Her cardiologist recommended it when she was about 7 months, but I was convinced that I was going to be able to get her off of the NG tube.  

I still can't stand the thought of putting her through another surgery.  We're at the point now where we know it will benefit her to just get it done.  The NG tube tickles the back of her throat when she coughs, babbles, eats and drinks.  It's an annoyance and I don't blame her.

Let me tell you, adding butter to her food doesn't come close to helping with the calories that she needs on a daily basis.  I add butter to just about everything she eats.  We've tried ice cream, malts, shakes, strawberry flavored Pediasure to the milk...I just can't get enough calories into her in between all of her feedings. It's quite frustrating.  We took the tube out for a full 2 1/2 days, but with a cardiac baby, you can't let them get dehydrated.  She was eating a lot more than she had been, but she wasn't drinking more than 10-12 ounces of fluid a day.  Her caloric intake for each day was dropping, she ended up losing a little over a pound in a week.

I've been so paranoid about pushing her too far with anything because she had such a rough start in life.  I guess I'm at the point where I am realizing that I can't let that be in the forefront of my brain anymore.  She's not where she was 6 months ago, 3 months ago!  She just had her Hemi-Fontan at the end of February.  I feel like we're more than just out of the woods.

We're finally past RSV season and I can take her out to the park with her siblings and actually get out of our house to see the Grandparents!  She looks more like a "normal" baby and has certainly been acting the part as well.  The difference in our quality of life as a family has turned a 180...and it's my feeling that it will keep going in the right direction.  It's our hope that getting the G tube will allow her to eat more normally and not be hindered by the negative reinforcement of a tube every time she swallows.

All in all, life is good, and I have no doubt in my mind that my life has yet to reveal the best part of this journey with Rosemary.  We're also very anxious to see her eat her first hamburger from Daddy's grill!

Stay tuned for more progress reports.  Thanks for reading.