Charlotte’s first Easter came and went in a blur. There was no little Easter dress, no fancy Easter bonnet and no Easter egg hunt. Instead the 2 of us donned our best Easter comfies (t-shirts and sweats) and drove back to Sioux Falls after a crazy busy 36 hours in Omaha.
Trips to Omaha are typically jam packed with visitors, and this one was no exception. We arrived at Grandma Debbie’s late Friday night, and after a good solid nights rest we were ready for a CrAzY Saturday. Here’s a rundown…
-A surprise visit from Aunt Jill, Uncle Jay, Jack and Owen. I didn’t think that we would get to see them as they were headed out of town for the weekend, but we managed to sneak in a few minutes! Thanks Musils!
-Another last minute visit from Aunt Linda, Jacob, Ben and Aubrey. Charlotte slept through ¾ of the visit, but once she was up she was so excited to play with her cousins.
-YAY! “Aunt” Shannon and Brian came to visit! They hadn’t seen Charlotte since last JUNE and were so surprised at how big she was getting. Now that they live a little closer in KC we hope that we won’t go that long again!
-A visit to Children’s Hospital to see our favorite nurse Natalie! She took care of Charlotte during our very first hospital stay and has had a special spot in our hearts ever since. We got to see lots of our other awesome nurses while we were there too! It’s always strange walking back into that building and brings back a flood of emotions, but I want everyone there to see our happy and healthy little girl….after all, they have worked so very hard to help get us to where we are today. HUGE HUGS TO YOU ALL!
-Charlotte’s first Easter gathering with the Wagner clan. Like Shannon and Brian, most of this group hadn’t seen Charlotte since last summer when we were at the river. To be 100% honest, I was worried about this part of the day. Charlotte operates in “stranger danger” mode and I was anticipating tears and a very clingy baby. I couldn’t have been more wrong. SHE DID GREAT and showed off some of her clapping and dancing skills as well.
-NamNam and PopPop took Charlotte home at the end of the night so that I could meet up with a group of girl friends from pharmacy school. We hadn’t all been together for 3 whole years. Talk about a much needed reunion! Not only that, but it was my first girls night (and probably only my 2nd night out) since having Charlotte…crazy huh? Its weird seeing that in writing—but it has been such an insane year! To Shannon, Kim and Tara—It was sooooooo good to see you all on Saturday night. I had such a good time and you were the perfect distraction from my otherwise chaotic life. I can only hope that someday Charlotte is lucky enough to have wonderful women like you in her life! Love you all and can’t wait until our next girl’s night out (hopefully it will be sooner than 3 years from now!)
10:00 AM Sunday morning and we were back on the road…headed home to celebrate Easter with Daddy! The Easter bunny visited our house while we were gone and brought Charlotte a lamb named Timmy and some colorful eggs to play with. The Easter bunny brought me a NAP (thanks, Matt!)
WHAT A PERFECTLY EXHAUSTING WEEKEND!
Friday, April 22, 2011
When Charlotte learns something new she likes to practice it over and over and over again just to make sure that she's got it 100% perfect. Lately its been fishy lips. I think that she makes this face about 1000 times a day, accompanied by a cute little lip smack.
She cracks me up....And apparently she cracks herself up as well.
Funny funny girl.
Monday, April 18, 2011
As a follow-up to my last post....
So I'm now convinced that God has made me paranoid for a reason. Sometimes paranoia can pan out and get people to check things that they might not have otherwise.
I got a call from the cardiologists office letting us know that Charlotte's hemoglobin came back at 18.7 Remember, 19 and above was what we DIDN'T want to hear. While its not 19, its close enough.
We are going to cut back on her diuretic to see if maybe we were pulling off too much fluid. She doesn't seem dehydrated, but pulling off too much fluid can concentrate her blood. I won't complain--one less med that we have to give through the day! Hopefully this will be part of the answer.
We will see Dr. Sami as scheduled in mid-May, right before her birthday if I remember correctly. At that visit he will do a repeat echo and have us repeat her labs. This time around they did a finger stick for the sample, which apparently can yield higher hemoglobin levels. Next time they will do a draw from the vein, which is sure to elicit tears from all parties. Sigh.
I know that I've asked for prayers on so many occasions from all of you, but please pray pray pray that her hemoglobin comes back down and that her sats continue to improve. While I love our team of physicians and nurses in Omaha, I'm not ready to see them inside the hospital walls again. Not ready. Not ready at all.
Over the past year I have changed a lot. Mostly for good, but parts of my new self drive me crazy. Number one being that I am crazy paranoid. As any heart mom out there can vouch for, our lives are are full of constant worry, wondering when something will go wrong, almost LOOKING for something that might possibly be wrong. Is Charlotte breathing heavier than normal? Do her fingers have more of a bluish tint than normal? Is her crabbiness simply an ear infection or teeth or is it something more? Does a long nap mean that she was especially tired today, or is she just so worn out because her little heart is working too hard? These questions cross my about 1000 times a day. Should we call the doctor? People say to trust your gut...but what happens when you are so constantly paranoid that your gut doesn't even know what to do?
I took Charlotte to the pulmonologist this afternoon because she just didn't seem "right." She's been pretty fussy and the last time we were there they said that her ears looked a little red (despite a course of antibiotics). Her fingers and toes have looked more dusky and her sats over the weekend were not great.
So here's the scoop....
1. One ear is still a little red with some fluid in it. We're going to try another antibiotic for a week and if things don't improve they will refer us to ENT. Yay...another doctor in our lives. (sense my sarcasm!?)
2. Sat in our little ladies big toe was 61 (YIKES) but when they put the probe around her foot it was 78-80 (MUCH BETTER, crazy that I was excited about those numbers!) Because of this they sent us to get some blood drawn for a hemoglobin check. Kiddos with heart conditions can have increased hemoglobins as a result of their chronically low O2 sats---kind of a way to compensate. Well, as hemoglobin increases, so does the viscosity of your blood. If her hemoglobin is elevated, that could mean that blood is flowing into her teeny tiny toe/finger blood vessels a little less efficiently, causing them to appear more blue even though her sats are ok elsewhere. They are ok with a hemoglobin of 15-16, but if it comes back 19 or greater, there is some cause for concern and we would likely be making plans for a visit to Omaha. Both Dr. Sami and Dr. Will don't think that this will be the case, but wanted to cover all of our bases. Still waiting for the phone call to let us know the results.
Overall they (we never get out of there without seeing multiple doctors) think that she looks great. We'll see how she responds to the antibiotic and go from there. Dr. Will said that her lungs sound great and that once we get closer to summer we can stop her inhaled steroids. We have a 2 month follow-up with cardiology in May and are hoping for good good things.
I will admit, it drives me crazy that I can't just let myself relax, but I never want to get to the point where I miss something big.
My name is Kristen and I'm a paranoid heart mom.
Sunday, April 17, 2011
Thursday, April 14, 2011
Today is a big day. A BIG DAY!
Today we are celebrating the last official "birthday" before Charlotte's actual birthday...she's officially 11 months old today! Much to my surprise, I'm quite nostalgic over the whole thing. It just seems so bizarre to me that she can be coming up on the one year mark so quickly. On one hand this year has felt like 10 squeezed into one, but then I look at her and wonder where the time has gone. My itty bitty baby isn't so itty bitty any more....sob.
My oh my...ELEVEN MONTHS?! What a big girl you are becoming! This past month has flown by and has certainly been a busy one for you! As always, it was filled with lots of firsts, and you are showing no signs of stopping.
-You mastered the art of clapping. We worked and worked with no results, then one morning while Daddy was getting ready and you decided that it was officially time---and have yet to stop since! We think that you were secretly practicing at night and didn't want to reveal those cute little claps until they were absolutely perfect.
-You learned something we like to call the "wiggle wiggle wiggle" which comes in handy with the next item....
-We started the after dinner tradition of "family dance party!" At first you sat quietly in your high chair with a grin on your face, but the very next night you were sitting on the floor doing your own little dance. Too cute!
-Two words....SOOOOO BIG. (the action AND the fact that you officially hit 17 pounds last week!)
-You learned to wave!
-Overall, you are getting soooo much stronger. Tummy time has become tolerable and you are a becoming quite the little stander. You still need lots of support from Mommy, Daddy, toys or furniture, but are definitely becoming more comfortable with it. This past week you even started moving your feet a little to take steps toward Daddy.
-You are quite the talker, babbling away in your cute little Charlotte language--which to this point, still doesn't consist of anything remotely close to mama. Stinker.
I feel like I say this every month when I write these, but baby girl, you amaze me. Every month, every day, every minute. Mommy and Daddy love you with every bit of our hearts (plus some more) and can't wait to celebrate 12 months together!
Love you to pieces....Mamamamamamamamamama (I thought you could practice a little)
Its getting harder and harder to snap a "smiley" picture of this child. She has quite the personality! Basically, she opens her mouth as wide as she can, then makes this noise and breathes like she's hyperventilating. See below....
Thursday, April 7, 2011
Tuesday, April 5, 2011
We are all entitled to bad days every once in a while, right? You know...those days where you can't really explain why, but you just feel off, and down and BLAH. Days where you kind of just make it through. Days where you just feel like crying (and often times do) over the most ridiculously tiny things? (Please tell me that everyone has these days!)
Two days ago I had one of those days and for the life of me I can't tell you what triggered it. I didn't sleep well the night before and just muddled through my day, trying not to let on that I was feeling down. The day just felt like it was taking forever.
Apparently Charley didn't get the memo that I was having a BLAH day and decided that it was the perfect day/night to become a stubborn eater.
That was all it took.
All of my BLAHs from the day came to the surface and manifested as tears, stress, anxiety...you name it. Her eating has always been anxiety inducing for me, even now that she is doing it 1000% better. Its almost like I feel like I can't breath when she eats well or I might jinx it! Silly, I know, but when you struggle with something for 10 months, you start to get a little irrational!
Like I said, just one of those days.
Later in the evening, still functioning on the verge of tears, I was digging for my phone in my purse. When I finally found it (its a big purse), this is what I saw.....
Confused??? Maybe this will refresh your memory...
For reasons I can't remember, I have been carrying Charlotte's "hospital journal" around in my purse with me. Her NICU bow was in that journal and had apparently fallen out into the bottomless pit of my purse. Of all days, Monday was the one that it decided to find my phone. I don't think it was a freak happening....I think that it was a reminder from someone who always has my back...
That bow...ugh...that bow is a reminder of how far we have come. It is a reminder of all of the things that our poor little girl has had to endure and overcome. It is a reminder of how amazing, how ABSOLUTELY AMAZING she is. It is a reminder that life is good...beyond good for that matter. Charlotte was 1 day old in the picture above. Who would have thought that almost 11 months later, with 4 heart surgeries and 2 heart caths under our belts that we would be where we are today.
Today we are fighting with eating because she is a stubborn 10 month old, not because she is a post-op, oral aversion prone heart baby.
So she didn't want to eat. Big deal. She's here, she's healthy, she is growing everyday.
Thank you God for that bow (and for the reminder as well!). Sometimes my mind wanders and I forget how insanely fortunate we are.