Keeping Occupied

Another week down...its absolutely crazy how quickly time can pass and feel like its standing still all at the same time.

As I said in my last post, Matt and I loaded up the pups and headed back to Omaha for the weekend. While it doesn't make things "easy," its sure easier than sitting in our house wondering what to do with ourselves. And even with lots of distractions, our baby girl is never far from our minds.

Lately Matt and I have been doing a lot of the things that we "wanted" to do over the past year....

I used to wish that I could stay awake later than 9 PM, but most nights I was exhausted from early mornings, work and our nightly routine of dinner, meds, baths and playtime. Now I'm awake until midnight...1 AM...sometimes as late as 2 AM. I just can't seem to shut my brain off and when I close my eyes my thoughts consume me. Sigh...I miss my tired, early nights.

I remember just wanting ONE DAY to sleep in. Now I don't drag myself out of bed until 9:30 or so (maybe because of the point above). I wake up expecting to hear cute little baby babble over the monitor, only to see it sitting on the night stand in the "off" position. Sigh...I miss my morning wake up call.

We have been going to movies--as a matter of fact, I have seen more movies in the theater in the past 2 weeks than I had in the previous year. Each time we go I get this feeling of guilt. How can I go and sit at "Bridesmaids" and laugh for 2 hours when my baby girl just died? How can anyone do that?! Sigh...I wish that I was back watching movies on Netflicks.

We have gone golfing, eaten out for lunch/dinner more than is probably good for us and even had a night out to watch our brother-in-law's band play. All things that would have required a little more planning before 2 weeks ago.

All of these are temporary distractions. They keep us from going crazy. They fill our time, but cannot fill the emptiness that both of us are feeling. They are the things that we thought that we "wanted" but were perfectly content without because in their place we had beautiful Charlotte. Sigh...what I wouldn't give now....

On This Day

I'm a very sentimental person.

I like celebrating milestones, big or small.

I have started countless posts here with the words "One year ago today...."

Today marks one of those "one year" marks, and while we won't be celebrating it quite like I had imagined, it is a special day none-the-less.

June 10 will always be special to me because it is the day that I first walked through our doors in Sioux Falls with little Charlotte. After a solid month in the hospital, 2 heart caths and 2 open heart surgeries, she was finally well enough to come home. I still get goosebumps thinking about it--I was bombarded with so many emotions that day. I was excited that we were finally going to be together as a family and terrified at the thought of not having nurses around for back-up, but mostly I felt love. Love beyond words for my precious baby girl. Love for my incredible husband who had been bouncing back and forth between hospital and home for the past month. Love for my puppies. Love for my own bed. Love for a "normal" life at home with my family.

June 10th, 2010 I was so excited to LEAVE Omaha.

June 10th, 2011 I cannot wait to GO BACK.

Matt and I are heading back this weekend. We need distractions and know that we can count on family for plenty of that.

I've said it here before and I will say it again.....

"Oh what a difference a year can make."

Here we are...

1 week later.

1 week since that terrible day.

1 week since we drove home to an empty house that no longer felt like our home.

1 week since we felt normal.

1 week since we held, snuggled, rocked, sang, danced...

1 week...and its felt like forever.

So much has happened in the past 7 days, it hardly seems possible.

First, thanks to all of you who were able to help us celebrate the life of little Charlotte on Friday. While it was a horribly difficult day, it still carried with it a feeling of peace. I'm still amazed at how beautiful her service was from start to finish. It was perfect, and aside from the obvious, I wouldn't have changed a single thing.

We made the dreaded trip home on Sunday afternoon with our moms and Matt's sister along for support. They have been the most wonderful distraction and my stomach aches at the thought of them leaving tomorrow. Its hard to even know where to begin. Every inch of this house is filled with memories of Charlotte, and while I never want to forget a single one of them, its all so very overwhelming right now.

I've struggled with this blog lately. I want so badly to come here and to pour my heart out, but the words are hard to come by. I've always been honest here, and while I don't share every detail of our lives, I put a great deal out there for public scrutiny. I have let you all into our lives--you have seen our good days, and as of late you have seen us totally broken. That scares me. Am I strong enough to put the new "grieving" Kristen out there for all to see? Can I continue to be truthful and honest, or will I hold back, fearful for how others will perceive my emotions?

If I can't be 100% honest, then I can't continue.

In my heart I know that I need this blog.

I need it as an outlet.

I need it to help me process the extreme grief that follows me 24 hours a day.

I need it to help me continue to celebrate Miss Charlotte.

I need it probably more than I even realize.

Little Miss...Oh How I Miss You

Little Miss Ritchie doesn't quite feel the same today. Usually I look forward to coming here to share our highs and "purge" our lows...but today I am forcing myself, and that breaks my heart even more than it already is.

Thank you all so much for the kind words, thoughts, prayers and support that you have shown us over the last 36 hours. I think that it goes without saying that Matt and I are operating in shock mode, totally knocked off of our feet at the drastic turn of events in our lives. It feels like a cruel joke that we could go from sunshine and swings....to this. Lucky for us, the same friends and family that have been lifting us up for the past 18 months swept in to help us through.

I wish that I had more to share, but at this point there are still a lot of unknowns. I just keep reminding myself that God has a plan for our brave little girl. She taught us so much in her short 12 months on Earth and the outpouring that we have had from all of you just shows us how powerful her story is.

A service to honor and celebrate our little lady will take place Friday at 1 PM at the John A. Gentleman funeral home at 72nd and Western in Omaha(visitation from 11-1). Burial will follow at Resurrection Cemetary just off of 78th and Center.

Gulp....

Please continue to pray for Mathew and I. While this initial "process" is gutwrenching, I know that things will be taken to a whole new level when we have to walk into our house in Sioux Falls and figure out how to begin picking up the pieces.

Fly high, baby girl...

Fly high.

Sunshine, Swings and Smiles

We hope that you all had a great holiday weekend with family and friends! Last year Matt and I snuck away from the hospital and spent some time with family for Memorial Day. This year we spent it as a little family of three. It was supposed to rain this afternoon but instead we had lots of sunshine. We took advantage of the nice day and took a little field trip to a park. Charlotte discovered her love for swings and had so much fun watching a group of "big kids" run and play!

Here's to the start of a HEALTHY summer and lots of sunshine!

Doctor Doctor

My last post was very "happy-go-lucky." We have been so proud of little Charlotte and we need to remember to celebrate the her big accomplishments. A reason to celebrate was actually just what we needed last week, because aside from that we've been functioning in "heart parent" mode. We had a run of doctor's appointments that didn't exactly go the way we wanted. I haven't written about them here because I've been tired, a little anxious, and trying to wrap my head around things.

I'll break things down here for you by doctor/date...

Wednesday May 18 - 12 month well-visit with our brand new pediatrician. Our old pediatrician took an administrative position with the hospital, and while we wish him nothing but the best--it was sad to know that we had to find someone new. We have so many specialists that we really only go to a pediatrician for well-visits and shots, but we still loved Dr. Elliott and he knew all about Charlotte's special heart. SO, I'm sad to say that we moved on, but happy to say that we think our new doctor is great. Charlotte was just under 18 pounds that day (10%) and 27 inches long (3%)...while its not huge, she has held to her growth curve and not lost any ground.

Charlotte was getting a monster cold the day of our visit, and I will be honest, she looked like junk when we got her to the office. Her color was off, her breathing was heavy and she was a bear. Pair this with a new doctor...and we were about 10 minutes away from landing ourselves in the hospital. They gave her a neb in the office and I eventually convinced them to let us go home with a PROMISE that I would bring her back if she got any worse. We started an antibiotic for a red, bulging eardrum and some steroid for some wheezing and she was significantly better by morning.

Monday May 23rd - Pulmonologist, chest x-ray, blood work and cardiologist...WHAT A LONG DAY! Dr. Will (Pulm) said that Charlotte's ears still looked red after 5 days of antibiotics. In the end he referred us to ENT which I will talk about in a bit. We have the clear to stop her inhaled steroid in a month if she doesn't have any wheezing.

Blood draw = tears

Chest x-ray = tears

Next up was Dr. Sami (cardio). If you remember back to our last visit with him, we learned that Charlotte's chronically low oxygen levels were having a negative effect on her hemoglobin/hematocrit. Well, after that visit Charlotte really seemed to turn around. Her color looked better and she seemed a ton happier. She started eating better and just seemed NORMAL! I was sure that he was going to come into the room and tell me her labs were better. WRONG. Both of the blood levels were actually worse. Talk about feeling defeated. I was confused and I could see that he was both confused and concerned. Sami truly thinks that her heart repair is functioning the way that it should, but it still seems to be her lungs that are holding her back. Her chest x-ray this time around was essentially unchanged. Enlarged heart and increased vascular markings. BLAH. They decided to re-check in a month and then present her to Omaha.

Charlotte has always been a basket-case with doctors. She is getting so much better and actually let Dr. Sami hold her for the first time ever!

WELL...Mommy got antsy. Within 2 days we were cycling through another "crumby" phase with purple fingers and I hit my limit. Thank God Dr. Sami's nurse is a patient woman and has been so helpful to me. After lots of emails and texts back and forth, it was decided that Sami and Will would get back together and come up with a plan. So......Tuesday morning Charlotte will go in for a lung scan to see how well she is ventilating (air) and perfusing (blood) her lungs. From there we will come us with the next step. We also asked that Dr. Sami not wait to talk with Omaha. We want Dr. Hammel to know what is going on and to see if anyone else has any crazy ideas as to what might be going on. I won't lie...I'm nervous about all of this. We know that she has a crazy heart, but the last thing that we need to add into the mix are crazy lungs. Please say some extra big prayers for Miss Charlotte this weekend. We won't know results right away, but I will be sure to keep everyone posted.

Friday May 27 - ENT - I was sure that they were going to tell us at this visit that Charlotte needed tubes BUT HE DIDN'T! Dr. Todd thinks that her ear drums look red because of her poor oxygenation, and while she does have some fluid in her ears, he doesn't think that tubes would be of much benefit. WOOHOO...finally some good news.

So that's that. 10 days, 4 doctors, 2 crazy parents and 1 amazing little girl who just keeps on trucking despite it all. Again, big prayers for Tuesday...and maybe some for me this weekend so I don't get too anxious!