Friday, January 28, 2011

The Many Faces of Charlotte Ritchie

Here are some more pictures from our marathon photo shoot the other night. Some of the faces this child makes are just priceless.

We started out all smiles...

Then threw in some giggles.

Giggles turned into silly faces.

Silly faces turned into playing with her hair. Lucky for us she didn't have food on her hands like she normally does when she plays with her hair.

Then she got bored and busted out the serious face--she's almost glaring!

Boredom = Yawns

Who knows what this was all about but I thought it was funny.

Miss Serious again. She looks like she's thinking "Mom, if you take one more picture I swear I'll come after you."

Then low and behold, the grins were back.

Charlotte is starting to realize that certain expressions will get a reaction from us. She has officially mastered the stink face which is promptly followed by a quick look to us just to make sure we were paying attention. Silly silly girl and full of personality.

HAVE A GOOD WEEKEND!

Thursday, January 27, 2011

Spring Fever, Smiles and Scars

You know that you live in South Dakota when the temperature is barely over 30 degrees and the weather man says "it was a gorgeous day out there today!" UGH. While it was nice to see the sun today and to have some of our snow melt away....the Ritchie's are really antsy for some warmer weather.




Hahahahahaha!

On a more serious note, I'm very happy to say that Charley is doing great. She has been a little crabby today, but I think that after many false alarms, she may finally have some teethies coming in. Yes, I've thought this before and been wrong...so who knows! Eating isn't back to normal but is pretty close and her personality is back to all grins.

If you remember, Charley wasn't feeling so hot on her 8 month birthday. Tonight we finally broke out the chair and got a few (by a few I mean 108) pictures. Some of them were pretty funny and you could tell she was sick of me by the end. Here is one for now, but I'll sort through them and share more later!

As if we hadn't taken enough pictures...I snapped a few more to show just how great her incision looks after surgery less than a month ago.

My chubby cheeked, crazy haired, big eyed girl.
I mean, really....those eyes are ridiculous.
Hmmmm....let me think about it.
Photo 108 of 108: Dad, get this crazy lady with the camera away from me!

Saturday, January 22, 2011

A Very Yummy First

So....

Charley still isn't huge on eating.

And yes, she still has special formula because of her milk and soy intolerances.

But who can resist Grandma Debbie's chocolate chip cookies????









Friday, January 21, 2011

Heartbreak

Our faithful blog readers have always been so good at lifting us up in times of need and praying relentlessly for our family.

Today I ask that you re-direct your energy to a family that we met while we were in the PICU at Children's. After a long stay and a hard hard fight, our little friend Kale earned his angel wings last night. Please keep the Soneson's in your prayers, that they may find comfort in this time of terrible grief.

May Kale finally find rest and may his heart be whole again.

Fly high baby Kale. Fly high.

Tuesday, January 18, 2011

One Year Ago...

Life has felt like a roller coaster lately.

December 10, 2010: Charlotte's heart cath
December 23-26, 2010: Our whirlwind Christmas in Omaha. 3 Christmases, 2 days.
January 3-12, 2011: Charlotte's heart surgery and hospital stay.
January 13-Now: Trying to get back to "normal"

Then we get to today. January 18. I hate this day.

January 18 is a day that I will never in a million years forget. It was on this day exactly one year ago that I went from a thrilled mama-to-be who just found out that she was carrying a baby girl, to a terrified and devastated mama-to-be who heard the words "there is something wrong with your baby's heart." January 18, 2010, was the date of the ultrasound that changed our lives forever and triggered the most emotional few days that I can remember.


We had an appointment with a cardiologist (Dr. Sami Awadallah) on January 19th where our fears were confirmed. Our innocent baby girl had a condition that at that time was completely foreign to me. Pulmonary atresia, intact ventricular septum and hypoplastic right heart. In the span of a day we went from hearing "It's a girl" to hearing phrases like "fatal if left untreated." Her heart was "broken"...and so were ours.

On January 20th, Matt and I met with a genetics counselor and were scheduled for an amniocentesis to rule out any other genetic abnormalities.

I don't really remember much from that day...by this point I think that I was on auto pilot and was mindlessly maneuvering through a dense fog. I remember the poke that they said would feel like a quick bee sting feeling more like the stings of one hundred angry hornets. I remember squeezing Matt's hand as that insanely long needle took a sampling of my amniotic fluid. I remember as plain as day words that at the time didn't phase me, but the more I thought about them angered me. The perinatologist, simply doing her job, was telling us that there were options (i.e. termination). She proceeded to say "I know that this isn't what you signed up for."

WHAT?!?!

We "signed up" to have a baby. We "signed up" to be a mommy and a daddy. Never did we say that we didn't want a child that wasn't perfect. Never did we think that we only wanted a baby if we were guaranteed that we would be a perfect little family without a care in the world. We DID sign up for this. We signed up for her. While learning of her heart defect was devastating, it didn't change the fact that we loved her or that she was ours.

Those early days are all a blur. Matt and I went through a very low period. We slept in the living room for days. We forced ourselves to eat. We dreaded every time the phone would ring. I sat in front of the computer for hours trying to figure out what this meant for our baby. The more I read, the more I cried. I never had morning sickness, but nausea and vomiting struck me many times. It was terrible. We were frightened for her, we were frightened for ourselves and we couldn't help but ask "why us?" Our lives were forever changed.

But here we are again, January 18...this time one year later. We have a beautiful little girl who's smile melts our hearts, who has taught us what is important, and has made us stronger as individuals and as a family. Charlotte is only 8 months old and has already endured 3 heart caths and 4 heart surgeries....more than most will face in a lifetime. The most important number there is 8. Eight months old. At this time last year I had myself convinced that I would deliver a baby that would never get to come home. A baby that would never get to see the nursery that her daddy worked so hard on. Yet here she is. Beautiful. Strong. Full of life.

Baby girl, together we can make it through anything.


Saturday, January 15, 2011

Our First Adventure of 2011

Ok...so I wrote this post once already and my computer totally ate it, so I'm going to give it my best shot one more time.

I don't know if any of you are interested in the day-to-day details of Charley's recent hospital stay, but I wanted to make sure that I covered it for our own memories. This is a pretty big part of our life to just leave out of a fairly detailed blog! I'm going to break it down day by day...it all passed in such a blur, hopefully I remember what happened when.

Monday: Surgery day. BLAH. It started bright and early at 6 AM and we didn't get to see our precious little Bear until after 7 PM! During surgery, Dr. Hammel was able to remove some excess muscle from her right ventricle that had been preventing it from contracting properly and allowing blood to flow through. He also replaced her "abnormal" tricuspid valve and placed a pulmonary valve as well. Again, we spent the day hanging out in the hospital lobby with family (THANK YOU ALL SO VERY MUCH!) I was really antsy this time around and found myself pacing, staring at my phone and begging it to ring with an update on how things were going. After Dr. Hammel finally came out to talk to us, I just remember thinking...I don't care what they did in there, I just care that its over and she's okay. Having said that, I was still pretty thrilled that Charley was getting another chance at a 2 ventricle heart.


Tuesday: This was an okay day. It wasn't bad. It wasn't great. We spent the day in the PICU chasing numbers--adjusting the medications that were helping Charley's heart beat adequately as well as the amount of oxygen that her breathing tube was providing. I could tell that Dr. Hammel was frustrated as he thought that her O2 sats would be better. Charley was also having some bleeding from around her chest tube. After holding pressure on it without relief, they finally decided to put a stitch around the whole tube. VIOLA! No more bleeding. So yeah, overall it was an okay day.

Wednesday: I woke up Wednesday morning to a phone call from Charley's overnight nurse. She told me that Charley had done fantastic through the night, but that Dr. Hammel was there and wanted Matt and I to come to the hospital. Initially my heart dropped in my chest, but then he got on the phone and explained that they wanted to take her to the cath lab to take some pressure measurements. We threw ourselves together and by the time we got there they were all ready to wheel her off. We talked to Dr. Hammel and Dr. Delaney (who would be doing the cath), signed the consent and off she went. The cath lasted about an hour and a half and when it was complete Dr. Hammel came out to get consent for yet another surgery. They rolled our lady across the hall to the OR and proceeded to replace the shunt that they placed in her very first surgery with one 1/2mm larger. It was a much shorter day and seemed to be just what Charley needed. Her sats jumped up into the 80s, they were able to wean off of her dopamine as well as lots of her sedation and the ventilator settings.


Wednesday evening: Bad night. They had totally turned off Charley's sedation in an effort to remove her breathing tube. Anticipating that she was going to wake up (and probably freak out) I decided to spend the night at the hospital. Turns out, Miss Charley likes her sleepy drugs and didn't want to let them go! I'm not going to go into detail because I will get too worked up and go on a rant, but the long and short of it is--they extubated her at 3AM despite the fact that she was still incredibly sedated. Immediately I knew it was the wrong decision. Bad night.

Thursday: Breathing tube back in at 8AM. This day was spent just letting Charley rest after a night of struggling. She was very stable, but had worked so hard through the night that she just needed some time. I felt so terrible for my poor little baby...


Friday: Friday was a good day. First of all, Charley's chest tube and pacer wires were removed as well as 2 of her IVs. Then, after almost 48 hours after her sedation was turned off, Charley decided that it was time to come out of hibernation and join the rest of the world. Around 6:15pm they came in and decided that it was time to take the tube out again. I won't lie--I cried. They were tears of excitement, but more so tears of fear. What if she wasn't awake enough? What if they had to put it back in again? What if? What if? WHAT IF? They didn't. She was breathing tube free and doing so well that after only 30 minutes they had her totally off oxygen. GOOD GIRL BEAR!


Saturday: This was a pretty quiet day. We let our lady continue to wake up as she was still very groggy. The doctors said that it was ok to try to start giving her a bottle, but she wasn't quite up for that! It was a pretty low key day but according to Matt, not such a low key night. We were taking turns spending the night at the hospital so that at least one of us could get some rest. Well, turns out that after her 5 day nap, Charley was ready to go. Apparently she only slept for about 2.5 hours that night....thus starts our downward spiral of exhaustion.

Sunday: LONG DAY WITH A VERY CRANKY BABY--not to mention that Matt had to head back to Sioux Fall. Charley fought sleep all day long and continued to fight the bottle. My anxiety level with feeding was steadily increasing so I finally requested an NG tube (Ok, so my request was a frustrated "put the tube in" followed by about 30 minutes of tears and pouting) hoping that some food in her belly would help calm her down some. Not so much. She was so tired and overstimulated by all of the activity in the PICU. Much to my relief, that afternoon we were transferred out of the PICU (YAY!!!) and to a quiet room on the 5th floor. I just knew that this would make things better. Hahahaha---wrong again. She was so far gone at this point from so little sleep that night and NO naps that there was no making this girl happy. She screamed, cried, arched her back....she just fought and fought and fought. I got a phone call from my mother-in-law Mary that night and I think that she could tell I was on the verge of collapse, so she came to the hospital and stayed until 6AM. During that time we took turns singing, rubbing Charley's back and patting her cute little bottom. I spent a good chunk of the night in the crib with her (Yes, a comical site that I think had Dr. Hammel entertained the next morning). At 4AM I finally hit a wall. I was tired and angry and overwhelmed. Ok...I will admit....I turned into a psycho raging lunatic. I became very demanding and NOT pleasant in the least. They gave Charley some Ativan. Her mommy could have used some too! Finally some relief. Finally some sleep. To be completely honest, I think that she was having some withdrawal from the pain medications. She was crabby like I've never seen before and clammy all over. Whatever it was, I was glad it was getting better.

From there out, Charley steadily improved. She was still very fussy, but who can blame her. You would think that a hospital would be a good place to rest, but when you have mean old nurses (haha) coming in and waking you up for vitals, it can be quite interrupted. We made it through though and I hope that when we have to go back again they don't say "UGH, Charlotte's crazy mom is going to be back!" A very big THANK YOU to our nurses Lindsey and Danielle...they saw me at my worst. Thank you so much for being patient with me--I'm a generally happy, easy-going person but this admission really got the best of me.

Wednesday was discharge day and I couldn't be happier to be in the comfort of our own home with Matt and the puppies. It hasn't been an easy adjustment, but we're getting there day by day. Our last big hurdle is eating. Its frustrating, but it will come.

There you have it...our week in a nutshell. There are so many things that I'm sure I left out, but I think that you get the picture. Overall Charley was a trooper. I've said it before, but the strength of these heart babies totally amazes me. It was a long week and we're hoping that we don't have to do it again for a long time. There is inevitably more surgery in Charley's future...this we know...but for now we are going to go back to taking life one step at a time.

Friday, January 14, 2011

What A Day...Ugh.

I woke up this morning at 6:00 to a hungry crying baby who didn't want a bottle.

I loaded up our fancy new syringes instead and reluctantly gave Charley 5 ounces of formula through her NG tube.

30 minutes later she got sick.

Back to sleep.

At 10 we repeated the process but I didn't even offer her a bottle. I decided that she just needs a break. I loaded up my syringes and gave her an NG feed, this time over a longer period of time to hopefully prevent the whole sick thing.

Back to sleep (recovering from heart surgery is hard work and we're napping A LOT!)

About 10 minutes later there was puke again. This time from a dog. Twice. YOU HAVE GOT TO BE KIDDING ME.

Then I heard Charley over the monitor. Puke. OH MY GOSH WHAT IS GOING ON!

Just then Matt called and thank the Lord he was on his way home from work. I was about ready to lose my mind.

The day has slowly gotten better, but having said that, its almost time for another feed. I'm going to try a smaller amount and just see if her poor tummy just needs a little bit of time. (PS...I took a break and fed her...from her bottle....SUCCESS!!!!)

Having said all of this, I really didn't want to blog today. Its 1:30 and I'm still in jammies. I haven't taken a shower and I smell like the stinkiest formula on the planet. The funny thing is, I DON'T CARE. I'm 100% Charley's today and she doesn't care if I'm clean or stinky or losing my mind. She just cares that I'm here.

So I'm blogging....and for good reason. Its Charley's 8 month birthday!

Charley Bear,

You amaze me. Today is your 8 month birthday and I wish that you felt better so that you could enjoy it more. Its hard for Mommy and Daddy to see you feeling so yucky, but we know that it is only temporary and you will be back to your old self soon enough. Its been a long and bumpy road lately, and I'm just floored with how you have bounced back from 2 heart surgeries in only 3 days. We are so proud of you!

In the last month...

-You celebrated your very first Christmas and BOY WERE YOU SPOILED! We even had to leave gifts behind in Omaha because they wouldn't all fit in our car! You got to spend time with your grandparents, aunts, uncles and cousins and had so much fun.

-You partied hard on New Years Eve. Ok, so maybe not, but a quiet night at home was the perfect way to ring in 2011. A new year full of new beginnings.

-You braved your 3rd AND 4th heart surgery in the first week of the new year. Baby girl, I wish that I could switch places with you, but I'm not sure I could handle it as gracefully as you do. Yes, its been hard, but you have done so well and have come so far in just a week.

-You LOVE puppies and giggle every time you see them run by. I can't wait for that giggle to find its way back, but for now I'll settle for smiles.

-Thanks to Children's Hospital, you now wear a size 3 diaper. Once you go up a size there is no going back!

-You weigh a WHOPPIN' 15 pounds! I liked hearing the doctors say "at least she has some extra reserve"...we have worked so hard for every single pound and I LOVE those chubby little cheeks and thighs.

-You had an NG tube placed for use at home for the very first time. We have put you through so much, you just needed a little bit of a break to get settled back into "normal" life.

In 8 months you have opened my eyes to a whole new world and I am a better person because of you. MUUUUAAAAHHH!!!!

We love you so much Charley Bear.

No traditional "Chair" pictures today. I don't think that Charley would be too happy with me. We'll get the 8 month ones another day, but for now here are a few grins that I caught this afternoon.
Yes, when you feel sick on your birthday you get to play with highlighters.

Hehe...I love this one!

Thursday, January 13, 2011

Home Again, Home Again

I'm sooooo sorry that I haven't been very good at keeping things up to date here. I could have never anticipated how "busy" this whole recovery process was going to be and obviously little Charley is our number one priority. None the less....you have been such a huge support system for us, I feel somewhat guilty keeping you all in the dark!

I'm planning on posting a sort of "week in review" sometime in the next few days, but for now I just wanted to let everyone know that after 10 days in the hospital, we got to come home last night. I wish that I could say that being home was the cure-all, but its been a rough 12 hours! Charley isn't big on the whole bottle right now. She is so hungry but I think that she's a little skittish with anything in her mouth (which I can't say I blame her after having a breathing tube inserted TWICE). Our new concern is dehydration. I went to pick up a medication to help coat her throat in case its still irritated from the tube, but if that doesn't help, we are heading to the hospital this afternoon to have an NG tube placed. Hopefully that will give her throat a little time to heal and give her a little time to adjust to life outside of the scary hospital.

Heart wise she is doing great...I will fill you in on details later but right now I need to take advantage of a sleeping baby and take a nap myself!

Wednesday, January 5, 2011

A long overdue update

The past 3 days have been quite eventful for the Ritchie family. We headed to Omaha on Sunday morning and immediately headed to Children's hospital to have a little pre-op conference with Charlotte's surgeon. We got to spend about an hour or so discussing our options for the following day and coming up with a plan. That day brought me back to a place that I don't think one can really totally prepare for. When it was all said and done, Matt and I were comfortable with the decisions that had been made and headed to his dad's house. That night we were lucky enough to have all of Charlotte's grandparents and 2 of her aunts come over for dinner and to have a 3/4 birthday party for our little lady. It was a good night and helped at least a little to take my mind off of what was to come.

Monday...surgery day...we reported to the hospital at 6 am for pre-op evaluations. Our tired and hungry girl did so well as she had a chest x-ray, EKG, many exams and 2 (yes, 2) baths to make sure that she was squeaky clean for her big day. They took her back around 10 am and the painful waiting game began. Lucky for Matt and I, our family is all here in Omaha and can always be counted on for comfort, support and much needed distractions. They truly make the long days more tolerable. Finally around 5 pm they came and told us that she was officially off of bypass and they were wrapping things up. It would be another 2 hours before we got to see her, but we managed! Much like the first time, I was terrified to see my baby...swollen, intubated and so innocently helpless....but she was perfect. She is perfect no matter what. There we're wires, lines and monitors everywhere, but there was one lonely foot with nothing attached to it...the perfect resting place for mommy's hand and endless kisses. She was done. She was safe. At that moment, nothing else mattered.

They next day was a rough one full of ups and downs. They always remind you that the first 24 hours is the hardest, but you forget the emotions that come along with that. I get lost for hours just staring at monitors and watching the numbers rise and fall. I double check her pumps (silly pharmacist) and want to watch her like a hawk.

Though she has been fairly stable, the surgeon and cardiologist were concerned at the amount of oxygen and support that she was still needing, so the decision was made to take her to the cath lab this morning. Things overall looked good but the decision was made to take her back to the OR for a shunt revision to help her road to recovery and to provide a little more help to her heart while we wait to see if her right ventricle grows. She is back in the hands of her surgeon as I type this...my heart is in my stomach and I can hardly wait to see my precious Bear again. They anticipate surgery to be 1 to 2 hours and hopefully from there things will go nowhere but up. I watched a video last night of Charlotte laughing at my in-laws dog. It made me happy but at the same time it made my heart hurt. Its only been 2 days since we brought her here, but I feel like its been forever since I have held her or saw those big sparkling eyes. The time will come though and she will be back, full of giggles and smiles.

Our Charlotte is a warrior. She has strength that surpasses anything I have known, but we know that her strength is a result of prayer. I continue to fill my days with conversations with God. I ask him to make her comfortable and to help her though. I pray for her surgeons. I ask that he send her guardian angels along this path with her to make the bumps in the road a little softer. I have this constant image of my dad holding her hand when she goes places that Matt and I cannot go...its provides peace and I know that he is there helping her be strong and not scared. BEST GUARDIAN ANGEL EVER.

Please keep us in your prayers over the coming days as we endure more watching and waiting. Your support is amazing as always, way beyond anything we could have imagined.

More updates to come....
Aunt Jill just received breaking news from Children's Hospital: Charlotte's surgery today went very well, and they are working toward removing her breathing tube tonight! God is good!!

Saturday, January 1, 2011

Starting 2011 with a BANG!

Happy New Year everyone! I hope that today finds you relaxing and enjoying the start of a new year! We had a pretty quiet evening at home--which is exactly what I wanted. We were big bums all day long, staying in jammies and watching more TV than is good for us! The perfect way to end a crazy year.

As I was laying in bed last night (yes, before midnight) I thought about how much has changed in our lives over the past 365 days. One year ago we were expecting a little baby...we didn't know that it was a SHE and we didn't know anything about her heart, other than it was beating strongly! We were naive to the health issues that so many families face with their children. We never thought about newborns needing open heart surgery, or even heart transplants. Yes, its been a rough year, full of ups and downs, but it has also been one of the most rewarding years of our lives. We have the honor of being mommy and daddy to this amazing little girl and have been so blessed on our journey thus far. In the past year we have grown stronger as a family and have been repeatedly reminded of how fortunate we are to have the support of our incredible friends and families. I have high hopes and ultimate faith that 2011 holds big things for the Ritchie family.

While Charlotte was napping this morning, I did something that I haven't done since we were released from the hospital in June. I pulled out the journal that I kept while I was pregnant and through Charlotte's hospital stay. The last entry was May 27 at 10:15. Dr. Hammel had just finished up Charlotte's 2nd open heart surgery in as many weeks. I re-read that entry and could again feel the relief that I felt that day. Surgery was over...she could finally start to recover and come home. It was a good day. Life has been busy since that day and I haven't made the time to write in my journal. I wish that I had...but at least I have this blog to detail what has happened between then and now.

My journal is about to see some more action this coming week. Tomorrow morning we are packing up our car and heading to Omaha to kick of 2011 with another surgery. We knew this day was coming, but I'm still struggling. Charlotte is such a happy little girl and is so full of life. One would NEVER guess that there was anything wrong with her. Inside though, we know that her heart is very sick. Surgery was hard the first time around, but I can't even begin to imagine how hard things will be this time. In the words of my mother-in-law Mary-- "Kristen, its going to suck." Haha---I actually made a point to THANK HER for saying this. I think that its the natural thing for people to constantly reassure you that everything will be ok, but I really needed to have someone acknowledge that though it WILL be ok, its not going to be easy...its going to suck.

I know that we have been in many of your thoughts and prayers for much of the past year, but please pray ESPECIALLY hard this coming Monday. Pray for a successful surgery and for a smooth recovery. Pray for Matt and I as we do our best to be strong for Charlotte. Pray for the doctors, especially Dr. Hammel, that God may guide his mind and hands with ultimate precision. Pray that we are getting surgery out of our system early this year, and that whatever intervention is made on Monday is it for the rest of the year!