Friday, April 30, 2010

Open Heart Surgery ... Check

So, sometimes life throws you curve balls.... and I am not really that great of an athlete. But I do believe God is on my team. He might even be the coach, when I let Him. Those tend to be the games I win.... err, there is no "I" in "TEAM", right?!

NOLA or Bust
After three days at home with my Bug, she went into Congestive Heart Failure. I was thankful we never had to use the CPR we practiced in the NICU. We took her to the Emergency Room on a Tuesday night ... and after two weeks of the Dr's trying everything medicinally they could to heal her heart, help her to gain weight and get her off oxygen, it was no use. Surgery was the only option if we wanted to keep her. The ambulance showed up with two EMT's strapping my 5 week old little girl on a stretcher, loading her up and driving her to New Orleans,LA to allow the cardiologist team and surgeons evaluate her and decide whether she was a "candidate" for surgery. I followed in my ride, believing with all the faith I could that this was the answer I had prayed for. My girl would be ok. When we arrived to the Ochsner's PICU, they took her oxygen off to see how she did on room air... and for some "random" reason, she didn't need it anymore (Random, because He is just like that sometimes). She lay in the bed for 3 days breathing on her own! It was the one thing the Dr's really wanted before they did surgery.

Dr Mello, the pediatric cardiac surgeon, explained to us this was a simple VSD repair surgery. They see a lot of these and it is pretty basic from what we understood. No fear - right?!

Surgery Day
We again, rose with the chickens and arrived at the hospital to spend some time with Lady Lennon. I wanted to rub her chest and feel the soft skin one last time before a big scar down the center imperfects my Bug's perfect skin. As I rocked her, I sang "Healing is in Your Hands" and "Came to My Rescue" over and over. I prayed ... more like begged... for God's control and guidance over those Dr's. I had peace like a river... so much that I sat in tears in awe of my God. Tears of joy because I knew this was the answer. She was going to be just fine. They came and rolled her away ... tiny little one in a big bed. She looked happy and alert and clueless as to what she was about to face. I mean, how much can a 5 week old really understand anyway? We waited in the waiting room for a short time and decided this is going to be a few hours we might as well get breakfast. Walking to the cafeteria, we passed the surgeon, "I was looking for you all... I just reviewed the echo and I was told this was a VSD surgery... that is not what this is. What I saw is an AV Canal. It's an all together different surgery. Shouldn't be any problems, but it's just not the same. I will talk and explain more to you after the surgery." And he walked in to cut my daughter open. I grabbed my trusty iPhone and got busy researching AV Canal. What I read was much more scary but explained her symptoms exactly. "God, what is going on?! Please reassure me You are in control!" I almost freaked out but again, my God spoke to me "Remember Job, he worshipped me no matter what trials he faced." So, again, I started my worship music and got to it. Surgery started at 7am and at 2:45pm he was finished.

Dr Mello came in and grabbed a magnadoodle (it was the only thing near by) and sat at the children's miniature play table and chair and drew exactly what he performed on my daughter. And thanks to my husband we will forever have a picture of this renown Pediatric Cardiac Surgeon at a mini table with a magnadoodle explaining the procedure that saved her life.

We were explained all the wires she would have, all the iv's, all the tubes for drainage, pace maker wires, breathing apparatus, feeding tube, catheter, heart monitors, arterial line, breathing monitors ... you name it she had it. The vision of my tiny blessing covered in these things was nothing in comparison to the actual sight of it. No parent ever wants to see this or imagine this. She looked lifeless and helpless. She looked unreal. The nurse folded back her blanket and there it was - the giant bandage that covered the wound that saved her life.

I sit here now, typing as she sleeps... sedated and medicated. Every now and then I see an arm or leg move as she begins to come off the anesthesia. And still I am in awe of my God. The strength He has given me is beyond my understanding, beyond anything I have ever had to do. We have a long road of recovery ahead .... and today the one thing I hear my God saying to me is this: "So, does the Down Syndrome seem like a such a big deal now? You had so many fears about a simple syndrome. Put it on a scale and weigh it in comparison to your daughter's life. Not such a big deal anymore is it?" And He is right... once again. The Downs seems like such a tiny issue compared to the life of my child. Bring on the Downs and all the therapy and good times ahead because I know it will be a bucket of ice cream compared to this! I have no fear.

So... I know Open Heart Surgery seems like quite the beginning to a bucket list for a 5 week old, but did you expect anything else?! I mean, you are talking about "my" offspring... Random is our thing.

Thursday, April 29, 2010

"My Kid Has What?!"

Hey everyone.

Ok so this is blog numero uno. I have missed blogging so much (RIP Xanga) and through all my recent trials I have decided it would be a good outlet. Basically it was this or random acts of screaming. Also, you never know who might be going through a similar problem and this may encourage them. I hope that is the case.

So, today's title, "My Kid Has What?!" (spoken in my best ghetto accent) is about a subject I have to admit, has been hard for me to share and speak about (so stone me, I have pride) to some people. I guess I am human after all... who knew?!

The Day: Wednesday, March 24, 2010
The Place: Monroe - St Francis Hospital

I wake before the chickens this day. I am packed and ready to go to the hospital... sort of an emergency c-section due to the amniotic fluid being "out of control". By out of control, I mean: I am 37 weeks pregnant, and I am measuring 48. (gestational period is 40 - in case you have never met a pregnant person) I thought surely I was birthing an elephant.

My baby girl was born at a whopping 7 pounds and 3 ounces. Hearing her cry the first time as they sucked her saturated lungs out, made me shed tears. This is my second miracle - my son, Preston Lake was born 4 years ago, yesterday (assuming today is March 24). Healthy as an ox and quite the handsome little booger (my personal nickname for him is Booger Bear - only I can call him this and he knows it - also shortened to Booger .... for future blogging reference) if I do say so myself! After all, he looks like his parents.

So here we are, the much anticipated arrival of Lennon Vale had arrived. We were warned, her lungs would have fluid and she might be sent to NICU for a few days and put on antibiotics. No worries... After all, this was "basically routine." OK so we're good and we know what to expect.
After the team stitches me up and sends me to recovery, Charlie (aka my Love) walks our gorgeous new daughter down to meet her brother and extended family for the first time! Lake was ALL smiles! Good thing that was on camera! And then off the NICU they go.

While in recovery, I lay still, and very much numb from chest down. Still worrying if I had double chins at this angle, my Love walks in and is so excited about his daughter, kisses me on the forehead and talks about how she looks... chunky, and cute as ever! He said, she had his sweet beady eyes and my big mouth! Gotta love family traits!

After a short while of gloating over our new found love, in walks the NICU Pediatrician, who we also found to be our neighbor. Sits down, starts small chat, explains the NICU process and her lungs and so forth... we're like, "Ok, yeah we know we were told, so when can we see her? Hold her?" She says, "Well, she has a central line, you might not be able to hold her for a few days, but we will see... you might be able to. Mom, we will wheel you by her on your way to your room."
So basically I got to "look" at her. Gee, thanks. But, she is healthy otherwise, right?! So I shall not complain! .... Or so I thought.

Where was I? Oh yes... she was telling us about her lungs... and then, "So there is one more thing I want to talk to you about. We believe your daughter has Down Syndrome. And the reason we believe that is the characteristics she has ... physically." (insert moment of awkward silence here) I am thinking to myself, I look at Charlie... he looks like a deer in headlights. I look back at the doctor. She is a nervous wreck as I am sure she is every time she tells parents the "one more thing". But she quickly goes on to describe the characteristics. "Now these can also be family traits and mean nothing... but adding them all together, the chances are pretty slim on it being that. We will do the chromosome test to make sure, and those results will be back in a week or so." A week!? Yes, a week, you read this right... Ok so my first thoughts, are "Ooooh uh uh, I am going to fast and pray and our miracle will come! She is NOT Down Syndrome!" And we did get a miracle... jut not the kind we thought we were getting.

Fast forward to the next day. Charlie wheeled me down in my wheelchair... stylin and profilin in my maternity pajamas, robe and slippers. They did not let me hold Lennon again this visit. Hormonal does not begin to describe me. All I could do was look at her, wires and tubes coming out her mouth, nose, belly button and vein. My chunky Lady Bug was not being loved on by her mother... she needed a hug and a kiss and to hear my voice and I could not reach her. Tears flowed out of my eyes like a river, and snot was flowing out my nose as well. It was not a pretty picture but I did not care. I was hurting to give snuggles, and my Bug was hurting to receive my snuggles. Surely she doesn't have Downs?! And then the tears felt as if they were blood.

Fast forward to Day 3... Charlie still wheeling me down every 3 hours to see our Bug. I look at her again and the nurse says, "Would you like to hold her?" Is this a joke?! "Yes of course!" So I held my Lady Bug for the first time... she was soooo tiny... I say that in comparison to Lake who was 9 pounds 10 ounces! As I hold her, I notice the "traits" .... Oh no. Fear set in, and it set in deep. I am pretty sure it grew roots and produced fruit almost immediately. I am already exhausted from crying almost non-stop. "God, PLEASE GOD, let it not be Down Syndrome!" And then the hurt came... a hurt in my heart. Literally it ached. I felt the tears like blood again. All I wanted to do was talk sweetly to my Bug but I could not stop pouring tears all over her chest. Finally, I gained some sort of composure and began to speak to her, her eyes did open a bit, but closed almost as fast. She was worn out. I am sure she has had a nasty time in NICU with all the poking and prodding. But, she was so gorgeous... and I couldn't believe that God would give me such a blessing... but where is my miracle.... Oh wait, the test results are not back yet! Hope has regained it's roots and fear has been weeded out of the garden!

Test Result Day:
"Well, the chromosome test results came back... " (insert hope and happiness here) " and it is confirmed, Trisomy 21 / Down Syndrome. " (insert fear and dread here) And there I am again, deer in headlights. She continues, "With the Downs they usually have heart defects but we have not found much, except a small murmur from a small hole - which all of us are born with, but usually close on their own. The Downs sometimes prevents them from closing but we will wait and see you never know." Charlie and I finish our visit and head back to our room. After a crazy scary wailing on my part, Charlie runs home to get some more clothes and things he and I needed for the rest of our stay at the hospital. When he returns, we had a heart to heart and I cried until my lips swole to the point of touching my chin and my nose at the same time and then my nose started pouring blood. Charlie thought I was having an allergic reaction and had a little freak out moment... but I assured him I was just losing my mind.

The grieving process:
I was grieving a child I never had. She was going to prom, get her driver's license, go to college, date boys, get married, have kids.... I feared this was all never going to happen for my daughter. All the things I enjoyed are never going to happen! Why oh why would a God who is so mighty to save and heal and perform miracles, give me this child who is "broken". I want her fixed! I want her "normal"! It really was not fair! I don't want people to look at her with pity or look at her and think "retard". But..... every time I wanted to be mad at God, I was reminded of something I said once...My how our words come back to bite us in the hiney. I said that "If God never did another great thing for me, the fact that He gave His son's life as ransom for my sins, would always be enough." And to this very minute I wholeheartedly believe that. Then there was ok so this must be punishment for my sins... And realizing this was not a punishment for my sins... now that was the hardest to accept. A jagged little pill indeed. But I did accept it and I do accept that God is in control. Later on I will explain how I came to realize that this little lady.... Lady Lennon, is a miracle. In more ways than one. She is no longer my lot, but my blessing.

Day 16 - NICU
After many prayers and thoughtful gifts... we realized how supportive our friends, church and family were! We were finally taking our baby girl home. What a glorious day! The doctors explained the heart defect, said they would expect her to go into Congestive Heart Failure, meds may help to prevent, but it was all "wait and see"... it might not happen for a few months to a year, then again, it might happen in a week or it might not happen at all.... The defect was simple, a 1 mm hole between her 2nd and 3rd chamber... possible surgery to fix, but again, meds might work just as well. I felt as if I should go grab my 1994 NO FEAR t-shirt and wear it proudly. We understood the risks and what signs to look for ..... but most importantly...
I was finally reunited with my Love, my Booger, and my Bug - my whole family all together. Life was as it should be... for the moment

That Forrest Gump sure knew what he was talkin about when he said "life is like a box of chocolates."