Wednesday, June 30, 2010

Is today over yet?!?!

Today was quite the eventful day for Miss Charlotte.

We had a chest x-ray at 2:15 this afternoon. This was pretty routine and everything looks good! Charlotte wasn't so thrilled with the whole process, but survived!

At 3:00 we had an appointment with Dr. Sami and an echo. It was strange going into the echo lab and not being the patient! I told Charlotte that mommy had spent a lot of time in that room so that the doctors could look at her little heart before she was born. She was a very brave little girl and was mesmerized by the twinkling lights on the ceiling. It must not have been too terrible of an experience since she was drifting in and out of sleep the whole time! Dr. Sami was pleased with the echo. There is still minimal blood flow into the little fistulas that Dr. Hammel tied off during her first surgery. We are very pleased with how successful that part of the surgery was, especially considering that Charlotte was kind of Dr. Hammel's guinea pig for this procedure. We like to think that she is pioneering the way for future heart kiddos. As for her right ventricle, Dr. Sami thinks that at this point its too soon to really see much growth. He wants to see her again in a month for a check up, and then in another month to repeat the echo. All in all, it was a good visit.

To wrap up the day, Charlotte made her first trip to the lab to have her blood drawn. The blood thinner that she is on, Lovenox, is dosed based on the patient's weight. They can check levels to make sure that the dose is still adequate for her.

A long day of appointments + a hungry/tired baby + a poke in the arm AND one in the foot = A whole lot of screaming! MAN OH MAN WAS SHE MAD! I almost lost it. She always had an IV line in place for blood draws in the hospital, so this was the first time that I had to experience the big pokes. My heart just broke for her and I was fighting back tears the whole time. Ugh...I don't even want to think about it any more. All that I can do is give excessive amounts of snuggles and kisses and thank God that she won't remember all of the ouchies we are subjecting her to.

So now we are finally home and Charlotte is 100% cashed out on the couch from her exhausting day. It was long and tiring, but we had good news the whole way through. Our baby girl continues to grow and amaze us every day.

Have I mentioned that I think Charlotte is the most beautiful thing ever created? This is the face that gets me though days like today!

Charlotte thinks that Maybe is her buddy. Maybe thinks that Charlotte is her pillow.

Monday, June 28, 2010

Wow...that is all that I can say

I spent a good chunk of last night thinking of the perfect words to use in this posting. I ran so many things through my head, but finally came to the conclusion that some things you just can't put into appropriate words. Some things are just to big, just too good, to be adequately expressed. My emotions yesterday fit that category...So incredibly big...So far beyond words.

This past weekend, Matt went back to North Bend, NE to help his team defend their title in an alumni golf tournament (which I regret to inform you, didn't happen). My mom game and stayed with Charley and I, and I must say, was my super helper! I know in my last posting I joked about her doing 3 AM feedings, but she actually did! She got up with Charley on both Friday and Saturday nights and was SUCH a big help. She totally made my weekend manageable while providing some "adult" time as well. Thank you Grandma Debbie!

Knowing that it was going to be a long weekend with Matt away, I had been dropping not so subtle hints letting him know that I wanted him to get up early on Sunday morning and head home. Eight o'clock isn't a TOTALLY unreasonable request, is it??? Well, low and behold I get a phone call at almost 11 letting me know that he was just getting on the road. ELEVEN O'CLOCK!!?!?! One might think that I would have been angry, and I would have had there not been a very good reason behind the delay.

Word of warning, this is where I get emotional and my eyes blur over with tears...

From the day that I met Matt, it has been very clear to me how much his friends and family mean to him. I know that he would do absolutely anything for them, and yesterday I learned that the feeling is mutual. When Matt called to let me know that he was running late, he also told me of an extreme act of kindness that I never in a million years could have anticipated. On Sunday morning, he was presented with a check for over $4,000 to help cover medical expenses for our precious little Charley. His family and friends had held a fundraiser, selling raffle tickets for everything from Nebraska football tickets to rounds of golf and various gift cards. All of these people have busy lives of their own with work, kids, etc. but took the time to line up prizes, post flyers at local businesses and even sell tickets door-to-door to raise money. The dollar amount, though extremely helpful, is insignificant in comparison to the generosity, thoughtfulness and effort put forth by this awesome group of people. I can't even think about it without totally choking up.

I feel like I say this a lot, but there are no words to express how thankful Matt and I are for all of the support that we have been shown since that life-changing day in January. I never could have imagined how many people have heard about and prayed for our little girl, and now this on top of it. Wow. I consider myself the luckiest person in the world to have Matt as my husband...and now I'm realizing that he came as a part of a package deal. Not only did I get the most incredible husband, I also got his friends. Matt, Charley and I are are so blessed to have you all in our lives. Thank you all so much.

On a total side note....Charlotte officially passed the 7 pound mark today! We are so excited!

There is no denying the red in her hair! You see it more in pictures than in person.
Keeping a close eye on the puppies out of the corners of her eyes
Love it, Love it, Love it

Wednesday, June 23, 2010

This week...

We've had a couple of exciting days here in Sioux Falls!

#1 Charlotte's "Aunt" Shannon and "Uncle" Brian came to visit! They had planned on visiting us in the hospital when they were in Omaha for the college world series, but lucky for us, we were discharged before that could happen! They came and spent the day on Tuesday and we were SO happy to see them!

#2 On Tuesday night we had a toga least Charlotte did! We can already tell she's going to be a trouble maker!

#3 Today we went and had a follow-up visit with the wound nurse at the hospital. We are proud to report that Charlotte's incision is 100% healed and dressing free!!! That means no more daily dressing changes (i.e. no more sticky tape to peel off of her precious little chest.) Now all thats left is the most beautiful little scar I have ever seen. She might not always think so, but we know just how special that little scar is. It reminds us every day just how lucky and blessed we have been and what a little miracle she is. Such a brave little girl!

#4 After our trip to the hospital today, we went and visited daddy at work! Charlotte was very excited and daddy was all smiles as he showed off his precious little lady. Every new person we meet continues to be amazed by her full head of hair! The picture below is a worn out Charlotte after a busy, busy day.

Matt has the next two days off of work so it will be nice to have a little family time and an extra pair of hands around the house! He is going back to Nebraska this weekend to play in a golf tournament and Grandma Debbie is going to come and visit. I haven't asked her yet, but I'm guessing that she doesn't do 3 AM feedings!

Monday, June 21, 2010

A special, special day!

Here is a picture from Matt's FIRST Father's Day with little Charley. He is quite the proud papa!

We love you, Mathew! Thank you so much for everything that you do for us. We couldn't ask for a better husband, daddy OR doggy daddy!

Saturday, June 19, 2010

1 week down!

Surprise surprise...being at home with a new baby has turned me into a bad blogger! Whenever I think about sitting down to write, there is either a diaper to be changed, a med to be given, a cry to be soothed or maybe just some irresistible snuggles to be had. Needless to say, life as we knew it has been turned upside down (in a VERY VERY good way!). We have been powering through sleepless nights and coming to appreciate simple naps. They used to be a luxury and are now more of a necessity! The other day I found a bottle of breast milk in the cupboard instead of the fridge, then later in the day I realized that I cut my fingernails on one hand but not the other. Ahh, the joy of sleep deprivation!

All in all it was a good first week at home with little Charlotte. She is a pretty content baby unless we are doing something to pick on her! I'm pretty sure that she would sleep for a solid six hour stretch if we weren't under orders to feed her every 3 hours. She's getting better at the whole eating thing and has been gaining weight little by little. I can't wait for her to get those little chubby baby legs! Then maybe she will fit into more of her "newborn" clothes...such a little peanut!

We had a cardiology appointment on Tuesday which went well. Dr. Sami was so excited to meet the little girl that he had been following since I was 18 weeks pregnant. He just kept saying "Oh, Charlotte, Charlotte, Charlotte. You are such a precious little thing." He will be a huge part of our lives and we couldn't feel luckier to have such a kind man following Charlotte's progress. It makes being away from our doctors in Omaha much easier. On Wednesday we saw the wound nurse at the hospital and were officially freed from the wound vac. That means that we are no longer tethered to anything! That has made day to day activity much easier. Now we are just doing daily dressing changes at home until the bottom part of her incision heals up. I can see progress daily so hopefully it won't be much longer now.

We're looking forward to daddy's first Father's Day tomorrow!

Sleeping Beauty saying her prayers

Enjoying a beautiful day

Wiped out

Our little girlie girl

Monday, June 14, 2010

Our Hero

This is a link to a story about Charlotte's heart surgeon. He is truly an amazing man that we can never possibly show an appropriate amount of gratitude to. We put our little girl's life in his hands knowing that he would do anything to keep her safe.

Wednesday, June 9, 2010

Home Sweet Home

I started to write this post last Wednesday afternoon when I got the news that the doctors were ready to send Charlotte home from the hospital. Between all of the hospital staff coming in and out to make sure everything was in place for discharge and all of the visitors who wanted to stop by to see us before we hit the road on Thursday, it remained a work in progress. Now that we have been home for 3 days, I figured that it was about time to send out an update!

So, in case there are people out there who hadn't heard, Charlotte finally got to come home on Thursday! After a full month of bouncing between NICU, PICU, heart caths, surgery and the recovery floor, we finally have our whole family under one roof! Just thinking about it is enough to bring me to tears. It felt like we were in that hospital forever, though I know how lucky we are to be out so soon.

I started keeping a journal back in February as a way to get out some of the rollercoaster emotions that I was experiencing, whether it be fear, anger, happiness, etc. With everything that has been going on lately, I have been really terrible about sitting down to write. As a matter of fact, I haven't touched it since Charlotte's last surgery over 2 weeks ago. I pulled the journal out the day before discharge, not to write, but to read and reflect on how far we have come. My entry on April 18th really jumped out at me. It was something that I read in an email, and after all that we have been through in the past month, it really hit home.

"God didn't promise days without pain, laughter without sorrow or sun without rain. He did promise strength for the day, comfort for the tears and light for the way."

Our little girl has come through so much, and undoubtedly has many hurdles still ahead of her. For now, we are living for today and enjoying every moment as if it were our last. We are smothering her with kisses, snuggling at every opportunity and totally spoiling our little warrior. To say that little Charlotte has changed our lives is probably the greatest understatement that I could make. She has taught us what is truly important and changed the way that I look at my life. I think that my sister Jill put it beautifully when she said "I am forever a better, more grateful person for having spent the past month witnessing the miracle of baby Charlotte. Each inch of her journey has reinforced my belief in the goodness of people, the importance of family and the grace of God."

I can't begin to express how thankful our family is for all of the support that you have given to us during this time of unimaginable stress and fear. Whether it be through prayers, cards, feeding us, a roof over our heads or even by "dog sitting"...these actions have not gone unnoticed or unappreciated.

Being home has been a huge adjustment. Its going to take time to figure out a good routine, but we're getting there. We have home health nurses coming to visit twice a week for the first two weeks we are home, a nurse coming on Monday to change the dressing on Charlotte's chest, 2 doctors appointments next week, medicine to give at multiple times through the day, and continued work on feeding (which has improved significantly), all in addition to the normal "new baby" things! Its chaotic, but worth every sleepless night and stressful day to have our family all together.

I promise to keep posting updates on our progress and lots of pictures.

Last day in the hospital

Home Sweet Home

Life at home is rough...

Daddy and his girls

Tuesday, June 8, 2010

Charley Update

As we approach the one month in the hospital point, its becoming obvious that they are getting closer and closer to kicking us out! WOOHOO! Our mornings have been busy with more and more people stopping by to make sure that everything is in place for our much anticipated discharge to home. This week so far has consisted of newborn education, a hearing screen (which Charley passed with flying colors), home health coordinators stopping by, infant CPR training...the list goes on and on.
The transition to home is sure to be an interesting one. Becoming a new parent can be overwhelming in itself, but I'm starting to realize that in addition to my title of "new mommy," I'm also going to have to learn to be a nurse. On top of the typical new baby routine, Charley will need to be weighed daily, have daily oxygen saturation checks and get a blood thinner twice a day to keep her new shunt from clotting off. Last night I gave my very first Lovenox injection, and let me tell you, it broke this mommy's heart. Most parents have a hard time when their children have to get vaccinations...and here I am having to be the one who inflicts the pain on my little lady. I teared up just thinking about it, but took a deep breath and told myself that this isn't an option. The shunt is keeping her little heart beating, and I will do ANYTHING I have to for that little miracle heart.

Then there is feeding. Never in my wildest dreams did I think that after all we have been through, that feeding would be one of the most frustrating parts of recovery! Common sense would tell me that if you breeze through heart surgery, feeding should be a walk in the park. Not so much. Little Miss Charley continues to work at this, with some days being better than others. Sometimes she's just not interested, sometimes she falls asleep within 5 minutes of starting, sometimes she eats well and then spits it all back up and other times she drinks like a champ. I have to keep reminding myself that this is all still pretty new to her (after all, its only been a week) and that "healthy" babies can have the same issues. Hopefully we will continue to make good progress and won't have to go home with the tube. We're very proud of how well she is doing and the progress she is making, but would be lying if I said I haven't had my moments!

Here are some pictures from the past week.

I officially "passed" being able to give her a bath! May not seem like a big deal, but working around lines and a healing incision can be quite the challenge.
Look at those HUGE eyes! Charlotte is having more and more wakeful stretches so we get to see her peepers a lot more.
Quality Daddy time. We wore a special outfit for him since he had to go back to Sioux Falls. Those are always hard days! We love you Daddy and can't wait to come home!!!
Ugh...melt my heart.
No feeding tube! The doctors think that maybe Miss Charley will bottle better without a tube running up her nose and down her throat. So far so good, plus now we can see her cute little face better. It's crazy how quickly she's changing.
We will keep you posted as we learn more about going home. Hopefully it will be SOONER than LATER!

Thursday, June 3, 2010

I almost forgot!!

After I posted last night, I was laying in bed when it hit me. Yesterday, June 2, 2010 was our little Charlotte Delene's "alleged" due date. Its hard to imagine after all that we have been through in the past 3 weeks, that she really wasn't even supposed to be here yet! I'm so glad that we are where we are now and not just starting the whole process.

I got to the hospital around 9:30 today to find that Charlotte was officially disconnected from her last monitors. Now we just have an IV in place until she is finished up with her last doses of antibiotic and an NG tube in her nose for whatever food is left after her attempts at bottling. FINALLY we aren't tethered to any machines!! Its so nice to be able to go and scoop her up out of bed like a normal little baby. I loves me some snuggles!

Wednesday, June 2, 2010

Melt my heart...

I took a picture of Charlotte tonight that I am totally in LOVE with! She had just eaten and had a happy full belly...I think that her face says it all.
I may be a little bit partial, but I'm pretty sure that she is the cutest baby that has ever existed!

Tuesday, June 1, 2010

Movin' on up

Well, with this post I have a little bit of bad news and a whole lot of good news. I will start with the bad news and just get it over with...and then we'll never speak of it again.

I was washing my hands in the bathroom this afternoon when I spotted something disturbing in the mirror. A GRAY HAIR!! I knew that things in our lives had been quite stressful lately, but really!?!? If she is already giving me gray hair at two and 1/2 weeks old, I'm guessing I'll be totally white by the time she's a teenager.

Now on to the good news...

Today was another exciting day for our little lady! Just five days after Charlotte's last surgery, the doctors decided that she was doing well enough to be transferred out of the PICU. As much as we loved all of our doctors and nurses downstairs, we were anxious to leave that place behind. It's just one more step toward HOME SWEET HOME! Ahhhh...I smile just thinking about it! While its been nice having family to live with rather than living out of a hotel or Ronald McDonald House, there is never a good substitute for your own home. Matt and I are so ready and excited to have our whole family under one roof.

Charlotte also started to bottle feed today. We started this morning with 50ml (just under two ounces) of fortified breastmilk every three hours. At this point they only want her to try from the bottle for about 20 minutes, then whatever she hasn't finished, they give through her NG tube. The reason for only allowing 20 minutes with the bottle is that if you let these little heart kiddos work on a bottle for too long of a stretch, they start to burn a lot of the calories that are better suited for growing. The first two tries she made it through about 20ml, the third try she was sawing logs after about 5ml and our last attempt was our most successful at one full ounce! Pretty good for our first day.

For now Charlotte is pretty low maintenance.

Eat. Grow. Heal. That's our mission.