Happy girl

Merry Christmas!

As promised, in lieu of an annual Christmas letter, check out our "Year in Review" video. Merry Christmas everyone, and I can't say it enough--THANK YOU for all your support this year. It is my hope that you are able to spend this holiday enjoying times with family and friends.

The most incredible Christmas gift.

Some get their daycare providers ornaments. Some get them giftcards. Some bake cookies or have their children make them a card.

Sam (and the rest of the Neuharths of course) got me the most incredible gift. I can't stop staring at it, and each time I do it brings tears to my eyes. Now, these pictures don't do it justice, but you get the idea.

It is beautiful. Missy gave a photo of Charlotte to one of her colleagues (the art teacher) and this is what he created...it is amazing.

Thank you Mis, for more than just this, for everything.

Here is the original photo:

How's Charlotte?

It has been awhile since I wrote about Charlotte's health. The reason being, she is doing so darn well, there isn't much to report. Our doctor visits have slowed dramatically, with only a 6-month well check in the past two months. She is growing well, as of a few days ago she is just over 14 pounds  and 26 inches long and while her BMI is in the 3rd percentile, this isn't too concerning as she is holding her growth curve. She actually weighs more than Katherine did at 6 months, I think we just make long and lean girls.

We are working on sitting and gaining core muscle strenghth. She loves being on the floor, and spends a ton of time on her tummy. She is pretty strong, and is on the fast track to being able to sit on her own.

Charlotte hates solid foods so far. She spits everything we try back out. I don't know if she has yet to swallow anything. In her defense, we have been a bit lazy about practicing. After all, she is the third child, who has time for baby food? Hopefully after the holidays when things settle down a bit we can work through her spitting issues.

The New Year is going to bring lots of doctor appointments. All routine checks, but it is crazy how many we already have scheduled. In January we go to the ophthalmologist for a vision screening, February is the Developmental Heart Clinic follow-up, the ENT for a hearing test, and the plastic surgeon to talk about when her surgery for her finger separation is going to be (we are thinking April or May). In March we have her 9-month well check, and early April brings her cardiologist appointment. Throw in a blood test every two months to check her thyroid levels and a bunch of PT appointments and we are already quite busy and 2011 isn't even here yet!

This is what Charlotte thinks of all the doctor appointments...

Stay tuned...

Upcoming Blood Drive....make your appointment!!

Awhile back I mentioned a blood drive being held in honor of two amazing boys--Zach and Sam. You can read their story, as well as find lots of good reasons why you should donate blood here: http://www.freewebs.com/zachnsam/

 Last month I donated blood for the first time. It was something I had thought about doing before, but really never made the effort. As I sat there during the donation, I was reading the posters on the walls. Each one had a picture, and then a quote from someone about why they donate. One in particular really struck me. A woman, who had never donated before, now donates regularly after her son's open heart surgery. This will be me. I have vowed to donate blood every two months (which is as often as you are allowed); and I am fortunate to have my mom, Kate, and Missy to do the same. We have standing date every two months; give blood and then go to dinner.

Please don't wait, like I did, until you or someone in your family needs blood before you donate. So many people out there needs blood everyday, and it is a gift that most everyone can give. 

Blood Drive info: 

(My appointment is for 6PM if anyone wants to get dinner before or after ;-) )

Zach and Sam's Community Blood Drive

Wednesday, January 5, 2011

2:30pm-7:30 pm

Ten Chimneys, Lunt Fontanne Program Center

S43W31575 Depot Road, Genesee Depot.

Please make your own appointment via the schedule line

at www.bcw.edu

 

 

6 months!!

Today, Charlotte is 6 months old. Where did the last 6 months go? I feel like it has been a blur of emotions. In the past 6 months I have gone from an emotional high (the birth of my child) to an emotional low (Down syndrome diagnosis, heart defect diagnosis), back to an emotional high (successful surgery), to finally some emotional stability. Throw in a million doctor's appointments and hours of worry and stress and those 6 months in some ways felt like 6 minutes.

How am I? Well, it depends on the day, and most times it depends on the minute. Most days, in the words of my son, I am great. I am a pretty optimistic person and have really focused on the positive the past 6 months. However, I would be lying if I said I felt great all the time. There isn't a day that goes by that I don't replay the conversation with the pediatrician the day after Charlotte was born...I can repeat it word for word. I think about life before that conversation, and then I think about life after. I still have moments of "its not fair" and "why her?" I still get angry, though less and less each day. I have accepted Charlotte's Down syndrome diagnosis, but that doesn't mean I like it. I have read many stories written by parents of children with Down syndrome and most say they would not take the Down syndrome away if they had the opportunity. I am not there yet; to me, Down syndrome is still the reason my child had to go through open heart surgery. Down syndrome is the reason that my daughter will have to face all sorts of adversity in her life. Maybe someday I will be one of those parents who embraces Down syndrome, but not yet.

There are days I cry; usually not due to anger, but rather worry. I worry about the future a lot. I know someday Katherine and Will are going to find out that their sister is different, and unfortunately not everyone may think she is as perfect as they do. How do I even begin to explain the ignorance of others to my children? I worry about Charlotte's health, because unfortunately that extra 21st chromosome can express itself in many different ways; hearing loss, delay in gross motor skills (due to low muscle tone), eye issues, thyroid issues....the list goes on and on. I try not to dwell on statistics (1 in 10 chance of leukemia...pretty freaky), but it still is worrisome. I worry about Charlotte's future, her education, what her cognitive level is going to be, future heart issues. I worry about things I can't change, and I know this, yet I still worry.

Don't get me wrong, there have been many, many happy moments in the past six months. I still find myself tearing at times when Charlotte smiles.  I love watching the interaction between Charlotte and her siblings; it is very, very sweet. The first thing Katherine does every morning is find Charlotte, and the last thing she does each night is hug and kiss her goodnight. I am waiting for the novelty to wear off, but then I wonder if this is just the beginning of a very special sister bond. The way Will grabs Charlotte's thumb and tries to make her smile is positively adorable. The excitement when Charlotte reaches each milestone is immense and shared by many. I find myself already changing for the better because of her; I am more accepting, less judgmental of others. I find myself having more patience and an appreciation of the "little things."

I am so very grateful for all I have. I am also completely, head over heels in love with my little girl. I can't imagine life without her, and look forward to each day with her. I really do feel like she is here to teach all who know and love her something; and I look forward to finding out what that something is. And while it has been a very intense 6 months, the joy I feel as I write this is knocking down the worry and anger. How can you not feel joy when you look into these eyes?

Happy 1/2 birthday Cookie! You are loved by so many.

Sweet potatoes anyone?

We have officially began the solids...Charlotte isn't so sure about it yet, but she is getting better. Katherine and Will think it is hysterical when she spits her food all over the place. It's pretty cute.

"I'm not sure about this...."

"Seriously mom! What are you feeding me?"

"Help me out here, big brother!"

"Maybe it's not so bad!"

"Hey, I think I liked it!"

Princess Charlotte

Katherine thought it would be cute to make Charlotte a princess. I would have to agree, she looks great in a crown!

50 things I am thankful for...

I have so much to be thankful for this year, here are just a few ;-). Keep in mind these are in no particular order.

1. First and foremost, Charlotte's repaired heart.
2. My husband. See my post from November 9th. He is fantastic. 
3. The way Will still holds my thumb for comfort and is the most affectionate 3 year-old one could ask for.
4.  My spunky, bright, red-headed daughter who keeps me on my toes.
5. Chocolate. What can I say, I am a stress eater...and this year has been stressful.
6. Missy. She gets me. 'Nough said. 
7. Charlotte's smiles. They light up a room and bring tears to my eyes. 
8. My mom for baby-sitting just about every Saturday night from the time Charlotte was born until now, in order for Mike and I to have time for "us" during the an extremely stressful time.
9. My kickboxing instructor (Kate) who tries her darnest to counteract the effects of my chocolate habit.
10. Mike's job, which allows me to stay home with our children. 
11. My dad for taking Will (and Katherine) to nature classes every month. They love spending time with their Papa. 
12. St. John's preschool for providing a caring and structured learning environment for Katherine and Will. Their five teachers are fantastic and were particularly wonderful before, during, and after Charlotte's surgery. 
13. Children's hospital for providing outstanding care for Charlotte.
14. Every single person who has prayed for Charlotte during the past 6 months. 
15. My playgroup for providing me moral support and help with my children.
16. My little brother Paul, who the day after Charlotte's Down syndrome diagnosis called to tell me that "people with special needs bring out the best in everyone, and Charlotte will do that for our family." That statement still resonates with me almost 6 months later.
17. Kate and Bill for throwing Katherine and Will a grand birthday party weeks before Charlotte's surgery--it was exactly what we all needed. 
18. My in-laws, who despite the distance, have done everything in their power to make life a little bit easier for Mike and I. 
19. The bond that Katherine and Will have formed with their little sister. I hope this continues forever. 
20. The fact that despite her heart defect, Charlotte was relatively healthy for the four months before her surgery.
21. For Will's ability to make me smile every time I ask him a question and he responds "great."
22. My friend Sarah Halon, who I see so infrequently, yet I feel so close to.
23. For Charlotte's fantastic sleeping habits. 
24. My sister-in-law Erin, who I can bounce my PT questions off of...
25. Andrew and Christine for taking Katherine many overnights this year. 
26. Each person who came to Katherine and Will's birthday party and still haven't received thank yous because they are sitting on my kitchen counter (two months later). I promise you'll get them soon. 
27. My mom and Kate for cleaning my house and filling my fridge the day Charlotte came home for the hospital.
28. For the friends and family as well as perfect strangers who made meals for us and/or send cards/gift cards during and after Charlotte's surgery. 
29. For Charlotte being born during a time when those with special needs are for the most part accepted into society...this doesn't mean we won't have to advocate for her, but it is so much better than it was 20 years ago. 
30. Sammy for making me smile every Tuesday, Wednesday, and Thursday. Alright!
31. My tutoring clients who have stuck with me the past few months, most the past 4 years! 
32. Facebook (I know, I know...nuts, right?) for keeping me in contact with so many people! 
33. Charlotte's ability to breastfeed despite what all the "medical professionals" told me after she was born. She is a rockstar.
34. My children for reminding me what it is like to be a kid. 
35. Missy, my mom, and Kate for rearranging their lives to watch Katherine and Will during Charlotte's bizillion doctor's appointments. 
36. My neighbor Melissa for the moral support. It is so nice to have someone who, though our situations are different, does truly understands what I am going through. 
37. Every person who has left a comment on here, sent me an email, or left me a facebook message. I can't tell you how much they have helped! 
38. The patience and understanding from family and friends each time I fail to return a phone call, send an email, or forget a birthday. I promise this will get better in the months to come.
39. Those who donated blood in honor of Charlotte, as well as those who raised money and walked as a part of Charlotte's web.
40. The Baby Center Community "Down syndrome" message board and "Babies/Children with heart problems" message board...I have learned so much from other parents going through the exact same thing.
41. Charlotte's complaining. She doesn't cry often, just complains. I love it. 
42. Everyone who tells me what Charlotte can do, not what she can't.
43. Tuesday afternoons watching DWTS with Katherine. She is quite the dancer. 
44. Dr. Tweddell for fixing Charlotte's heart.
45. Health insurance. 'Nough said.
46. Every person who went and went online and researched Down syndrome, read a book or an article, or made an effort to understand what we were/are going through. This means so much to us. 
47. McDonald's 49 cent ice cream cones. They aren't chocolate, but what a great, cheap treat! 
48. Coffee Wednesdays. I look forward to it every week. ;-)
49. Lazy weekend mornings; drinking coffee with my husband, eating pancakes with my kids, and nursing my baby....just being normal, since for so long nothing seemed normal.
50. For you. The person reading this. Thank you, thank you, thank you. 

So, in a nutshell, I am pretty dang lucky. My family, my friends, my health, my children's health...so much to be thankful for this year...

I leave you with a little glimpse of what makes me smile every night.

 

Happy Thanksgiving!

My litte roller.....

I went in the kitchen to make lunch yesterday and left Charlotte playing on the floor. I came back 5 minutes later and this is what I found....

Answering the taboo questions...

 You know those questions that everyone wants to know the answer to, but no one wants to ask? I've answered them below.

Question #1: Are you an older mom?
Charlotte came into this world one day after my 30th birthday. Is 30 considered old? I hope not. In reality, 80% of babies with Down syndrome are born to women under the age of 35. It is true that the odds of having a child with Down syndrome increases with age, however more children are born each year to women under 35, therefore increasing the number of babies born with Down syndrome. At age 30 our odds were 1 in about 900.

Question #2: How did you not find out about the Down syndrome before she was born?
We chose not to have the quad screen done early in my pregnancy for a few different reasons; first, I wasn't high risk due to my age and previous pregnancies; second, there is a very high incident of false positives on those types of screenings; and third, it would not have made a difference one way or the other. Mike and I would have accepted and loved any child we had and would not have chosen any other option if we had found our prenatally. It is amazing to me that the termination rate for Down syndrome is 90%, something I can't understand, though that is another blog post.

I did have a 20-week routine ultrasound, and no markers for Down syndrome were found. Charlotte's heart at that time looked healthy. We later found out from our cardiologist that about 50% of AV canals are not found until after the baby is born. At that ultrasound we did find that Charlotte had a twin, and the fetus had stopped developing at 14.5 weeks (talk about a shock!). However, there was nothing that gave any indication of things to come.


Question #3: How did nobody realize Charlotte had Down syndrome until the day after her birth?
 I remember calling Missy after talking to the pediatrician and telling her that they thought Charlotte had Down syndrome. She was in complete shock...she said she had stared at Charlotte for the longest time the day before and had not even a little inkling or feeling that she may have Down syndrome. After Charlotte's birth, like many babies, she was a little swollen. That, coupled with the fact that she had a hat on the majority of the time hiding her ears and neck (her two most prominent features that point to Down syndrome) made it difficult for anyone to suspect anything. Though, as soon as the pediatrician said the words to us, I knew it was true and never questioned it, even though it was a few weeks until we had proof through a blood test.


Question #4: Does this increase your risk of having another baby with Down syndrome? 
The type of Down syndrome Charlotte has (trisomy 21) is not genetic. There are three types of Down syndrome; one of the types can be genetic, but most are purely just a fluke. Some say that are odds of having another child with Down syndrome is 1 in 100 just because it has been shown to have occurred before. However, the geneticist we saw said that our chance of having another child with Down syndrome is the same as any other couple our age. Many ask if we are going to have any more children; the simple answer to that? At this time we have a 5 year-old drama queen, a son in the midst of the "trying 3's", and a baby who just had open-heart surgery...what do you think?


There are more questions, I am sure, but right now I am off to deal with my spunky 5-month old that no longer naps....makes for some long days!  Have a good weekend everyone!

4 weeks ago today...

Four weeks ago today, Charlotte had her open heart surgery. It is still AMAZING to me how fast she has healed. She is back to log-rolling across the family room, pushing up on her arms, and even trying to get her knees up under her. The only difference in her today from 4 weeks ago is the scar that runs down her chest, and even that looks pretty dang good. Check it out.

For those wondering, she didn't have any external stitches or staples. They used dissolvable stitches on the inner layers, then glue and steri strips on the outside. Her last strip fell off a few days ago, and pretty soon we will be able to give her a regular bath again. The little scar underneath the big one is from one of her chest tubes (the other one was on her side). Katherine thought her incision looked like a zipper with the steri strips on, so she now informs everyone that her baby sister has a zipper. Pretty amazing.

Charlotte's Daddy

I am married to a wonderful man. I know that sounds cliche, but I really can not imagine going through the past 5 months without him by my side. I am blessed to have such a supportive partner, and my children are blessed to have such a caring, involved father.

Mike is a hands on father; never questions me when I want to go out and leave him with the kids. After working long days, 2-3 nights a week he walks in the door as I walk out the door to tutor. He bathes the kids, changes diapers, plays board games, reads bedtime stories and all those other things that makes a father a "daddy."

Mike's calm and patient demeanor is a perfect balance for my anxious, sometimes uptight personality. We are truly opposites, but in a good way.

Mike never faltered after Charlotte's diagnosis. Two days after she was born, he very simply said "We raise her just like we raise the older two kids. We are so lucky to have 3 children, there are a lot of people out there that can't have kids." Charlotte is lucky to have such a fantastic daddy, who will always be there for her.

Today, on Mike's 31st birthday, I want to thank him for being the husband and daddy he is and wish him a happy birthday! Love you babe.

Daddy's girls

Will with his dad

Good Friday Morning!!

Check out Charlotte's head control :-)! Her PT was impressed!

Holland

After Charlotte's Down syndrome diagnosis, I frantically searched the web for information. One poem I came across frequently was "Welcome to Holland" by Emily Perl Kingsley. The author uses a metaphor for describing raising a child with special needs. The first time I read it, it was vaguely familiar to me. After racking my brain, I finally connected the poem to a song I had heard a few years before at a concert. David Roth, a folk singer and good friend of my parents, had written a song based on the metaphor in the poem. At the time, I had no idea the song was a metaphor; I just thought it was a nice song about visiting another country. Hah! In my defense, I was young and I am a pretty concrete thinker! I also had never looked at the printed lyrics, just listened. Below are the lyrics, however I urge you to download the actual song from iTunes. Hearing it makes a bigger impact :-).

HOLLAND © 1997 David Roth 

We planned a trip to Italy, we got so darned excited
We bought a bunch of guidebooks and we learned a phrase or two
We packed our bags and off we went, directly for the airport
As prepared as we could be for something altogether new
We’d mapped out all the prime locations, Rome, Milan, and Florence
We connected with our agent about nine months in advance
We knew this trip would change our lives,
We went to classes, husbands, wives
We didn’t want to leave one thing to chance
But when we landed we were in Holland
Italy is what we had in mind
This was not what we’d come all this way to find
We couldn’t change it, we got our baggage
And we began a trip we never in a million years
Could have imagined
We got our footing quickly though, there wasn’t time to take things slow
We got some brand new guidebooks and we learned a whole new language
We met people who we never knew, existing here in Holland
Reluctant as we were with all these unexpected changes
Nowadays we still see everybody all around us
Busy coming and going off to Italy as planned
They’re all bragging what a great time
And they pass around their pictures
We smile and say “your trip sounds very grand”
And when we’re honest we’re exhausted
As we walk the streets of now-familiar towns
A different dream is what we’ve landed here and found
But we have tulips, we have Rembrandts
And we remember that not everyone will know
Such different kinds of beauty

I prefer the song over the poem for a couple reasons. The first, at the end of the poem the author states the pain of the loss of the dream I had for my child will never, ever go away. Maybe I am being idealistic in my thinking, but I do hope that one day I will no longer feel that pain. I have said before, and remind myself often, that I am mourning a loss of a dream, however it was my dream, not Charlotte's. I look forward to discovering Charlotte's hopes and dreams. I prefer the end of the song, which focuses on the beauty of the differences we will get to experience.

The second  reason is words, for me, seem to make more of an impact when in a song and put to music. Already, I have found comfort in this song and have listened to it probably a hundred times in the past few months. One warm summer night in July, after a particularly bad day, I left Mike to put the kids to bed, strapped on my iPod and spent 45 minutes jogging/walking around the subdivision listening to this song on repeat, crying of course. Sometimes a good cry can really help one's frame of mind.

"Holland" by David Roth is on his Irreconcilable Similarities album. Along with "Holland", I also enjoy  "A Little Something More," a song about a young man with Down syndrome. http://www.davidrothmusic.com/index.html

Crazy weekend!

We had a fun-filled, crazy Halloween weekend. We spent the time with family and friends at various Halloween celebrations. The kids all had a blast; though we are still trying to catch up on sleep.

Charlotte continues to do really well. She has been sleeping a little bit better at night, and her usual happy self during the day. She rocked her orange tutu and polka dot tights this past weekend.

Firefighter Will

Pumpkin Girl

Princess Peach

Mario and Princess Peach

And even though this picture isn't from Halloween, I wanted to share it!

A couple of updates!

Hello! I thought I would put a quick post up in order to update everyone what is happening here. It is amazing how "boring" life has become in the past week! I love it! Things are quickly settling down and returning to normal and it feels fantastic.

First, blood donation update! We switched the date to Tuesday, November 2nd. Missy and I, as well as my mom and Kate are going to donate and then go out to dinner. We moved the date up so we will all be able to donate at a blood drive on January 5th. The blood drive is in memory of the grandsons of a dear friend of ours (and my parents). It is going to be held at Ten Chimneys in Genesee Depot. Mark your calendars and I will post more information as I receive it. Also, there are a few appointments left for the evening of November 2nd at the Waukesha donation center.

Second, a Charlotte update. She continues to do really well. Yesterday, she starting rolling over again (she was rolling before surgery, but hadn't attempted it since) which makes us think she is feeling pretty dang good. She doesn't seem to be in any pain, and has been super happy. She is back to her normal schedule--barely sleeping at all during the day, but putting in some good stretches at night. We had a pediatrician appointment today and she received her 4 month shots. Her weight is about the same as it was the day before surgery, which is to be expected. She is in the 70 percentile for height and 13 percentile for weight; she seems to be following Katherine's growth curve! The pediatrician isn't concerned about her weight as she is eating really well. I put a call into her PT today to set up her next appointment. I also scheduled an appointment with the Developmental follow-up program through the Herma Heart Center. Basically, we go every 6 months for the first 3 years and she is evaluated by a Developmental pediatrician, a PT, an OT, and a ST to see if she is on track and receiving the services she needs. They only work with kids that have had cardiac surgeries and have a lot of experiences with babies with Down syndrome.

Mike went back to work today, so I am back to my crazy pick-up/drop-off schedule with the kids for preschool. I have another week off of tutoring and watching Sam; trying to use the extra time to catch up on things around the house.

We are looking forward to Halloween this weekend. Katherine is going to be Princess Peach (she chose this because her "best friend Alec" is going to be Mario), Will a fireman, and wait until you see the super cute little outfit Missy made me buy for Charlotte! I'll be sure to post pictures.

Blood Donation "date"

Donating blood is so important, and unfortunately not many people (myself included) donate on a regular basis. I have vowed to change that about myself, and hopefully take a few people with me. Missy and I want to donate blood in the next few weeks and make a "date" of it. We plan on leaving the kids home with their dads, donating, and then going to lunch. We are thinking Saturday, November 13th. Anyone interested in joining us? Claim Jumpers for lunch? Morning without kids...sounds relaxing!

If you can't join us that day, I urge you to pick another. It is an easy way to help others and doesn't cost anything. Here is the blood center link, you can make appointments right online:
http://www.bcw.edu/bcw/

No more cardiologist until April!

We had Charlotte's post-op cardiologist visit this morning. Everything looks pretty good. Her chest x-ray was clear, she has just a slight murmer (which will most likely always be there), and she no longer needs to take any cardiac meds. The only concerning thing is some very minor leakage from the two new valves. We knew that this was a possibility and is pretty common. They will keep an eye on it, and if they leakage gets worse she may have to go on blood pressure medication in the future for maintence. There is also a very real possiblity that she may need further valve repairs and/or replacement later in life, but we are hoping that isn't until at least her teen years. The cardiologist said that there are kids that have minor leakage after surgery and it never gets worse and no further surgery is necessary. It is just a wait and see.

We got back in April for another ECHO and EKG. We have to be pretty careful that she doesn't get sick during the next 6 weeks, but other than that she really doesn't have any restrictions. Yay!!

It is all about perspective.

The afternoon after Charlotte was born, a nurse came to our room after taking Charlotte's blood pressure and asked us if we had noticed that two of her fingers and two of her toes were fused together. At the time, I was really upset, my perfect little girl had fused fingers and toes? The thought of her going through surgery to separate them was devastating to me. Surgery? How scary! I cried when Katherine had her 2 month shots five years ago, how could I handle my baby going through surgery?

A couple hours later, the pediatrician came to tell us that she thought Charlotte had Down syndrome. Suddenly fused fingers seemed so minor. It is all about perspective.

After being mad at the world and crying my eyes out for three days after the Down syndrome diagnosis, we went for an ECHO. When the cardiologist told us that Charlotte had heart disease and would need surgery during her first year of life, the Down syndrome diagnosis all of sudden seemed minor. It is all about perspective.

Walking through the CICU last week, I saw babies who had been there for months, kids Katherine's age waiting for heart transplants, and newborns who have yet to be held by their mothers because they are so medically fragile. Suddenly, Charlotte's heart defect seemed minor. My daughter's heart had been repaired, she didn't need a transplant. Charlotte went into surgery healthy, and spent a mere five days in the hospital. It is all about perspective.

So many people have told me how strong I have been the past four months. I don't see it that way, I don't feel strong. I did what I had to for Charlotte, and for Katherine and Will. No one asked me if I wanted to deal with all these extra challenges that Charlotte has brought. Do you know what has made it easier? Perspective. There is always some one out there that has it worse off than you, and when you realize that, life doesn't seem quite so bad.

In fact, life seems pretty dang good right now. I can't describe the sense of relief I feel every time I look at my daughter. I know that challenges lie ahead for Charlotte, and we will take them one day at a time.

I'm emotionally beat.

I had really good intentions. I had a topic that I wanted to blog about in my head all day. But, it's going to have to wait until tomorrow. We have had a great first day home today. Katherine had preschool, Will and Mike did some yard work, and I spend a lot of time cuddling/nursing Charlotte and thinking about how grateful I am. We also all (well, except for my eldest) took naps and tried to catch up a bit.

Charlotte is doing well. She is a bit sore, and we have been giving her tylonel to help with the pain. Certain positions seem to bother her more than others. She is eating well, and enjoying the craziness of her silbings. Cooing a lot and offering us a smile or two here and there. Katherine helped me give her little sister a sponge bath today; both my girls seemed to enjoy this, and Charlotte's hair is a bit less crazy now.

As the five of us laid in Will's bed tonight reading bedtime stories (good thing he has a queen size bed!) I couldn't help but get a little teary. I have three, amazing and now healthy children. I have a wonderful husband that has been fantastic through all of this. How did I get so lucky? We are enjoying life over here, that is for sure.

To answer the question of a few today, no the blog is not over just because surgery is. Those of you who know me, know that I always have a lot to say, and Charlotte's journey in this world has just begun. Stay tuned.

We are going home!!

Thank you for all the thoughts and prayers! They worked!!! After five days, we are out of here!

Thank you!

Thank you so much for all the comments, emails, facebook messages, cards, etc. It has helped me a ton to know so many people care! I am sorry I haven't responded to all of you individually, but know I have appreciated each and every one of them!

Tomorrow we have a 7AM ECHO and EKG. After that we have to do a carseat test (basically means that Charlotte has to sit in her carseat for as long as it takes us to get home and they watch the monitors to make sure her stats don't drop) and take an infant cpr test with the nurse. Then, maybe...just maybe we could consider discharge? I am hoping either tomorrow or Tuesday. The nurse told me tonight that no one ever talks about discharge the night before because it jinxes it! They obviously have to be really careful with patients who have had cardiac surgery because even though Charlotte looks fantastic she did just have major surgery on her heart only five days ago.

I'll keep you updated! Thanks again everyone, you have made this so much easier for us!

Want to see Charlotte?

Andrew came to visit last night and he took a video of Charlotte for MaryAnn and Drew. Check it out.

http://www.youtube.com/watch?v=m24r3OBQZCs

Look at how good she looks!!

I can't believe that Charlotte had surgery just three days ago, she looks amazing. I nursed her today a couple times, which made us both pretty happy. She is eating well, and keeping her stats up. As long as she meets her food goals we can start talking discharge in the next few days!!

Anyway, check it out for yourself!

No more tubes!! And, we're moving up!

The final chest tube came out about an hour ago, as well as the pacer wires to her heart. All that is left is an IV in her foot. She is happy and calm. They gave her a dose of morphine when the chest tube came out so she is a bit loopy, but once she sleeps that off the only pain meds she will be on is Tylenol. Plus, the nurse just told us to pack because we are moving up to the general floor. No more continuous monitoring. She is doing fantastic.

She continues to amaze us with how well she is doing, Charlotte is one tough cookie!

Quick update

I will have more to update after rounds, but I wanted to pop on quick because I know quite a few people check first thing in the morning.

They are pretty sure her last chest tube will come out this morning! When that comes out, she can hopefully wean off the oxygen and then she will be much more comfortable. After that, she will just have an IV. It is crazy to think that 3 days post-op she looks so good. I haven't tried to nurse her since yesterday morning because it is next to impossible with the chest tube. She is really uncomfortable when we hold her, so we left her in bed yesterday and fed her there. Crossing my fingers that once that dang tube is out, she will be more comfortable and she can nurse again.

We may have Katherine come and visit today. She really misses her sister! Will has a pretty nasty cold/cough so he is going to have a low-key day at home, in hope that he will be able to recover before Charlotte comes home.

No one has given us an exact discharge date yet, but when our cardiologist came up yesterday, she thought maybe early next week if she continues to do so well. After the tube is out, she just has to show that she can eat to gain weight; which they don't think should be a problem since she was eating well before surgery (which isn't true for a lot of babies with heart defects).

Pretty good night!

Charlotte is down to just her chest tubes, a tad bit of oxygen, and one IV line. Up until this morning she had been eating really well; I tried to nurse her this morning, without success due to the nasal cannula, which ticked her off and now she doesn't want the bottle. Hopefully they can wean her off the oxygen and I can nurse her again in a few hours.

I am anxious for them to pull the chest tubes. I have been told that they are pretty painful every time they move. A nurse yesterday explained it feeling like having a tetnus shot and then moving the needle around inside the muscle. They may come out today, we'll see what they say at rounds.

I slept for 4 continuous hours last night. It is amazing how rested I feel after so little sleep. I think that is more than I have gotten the previous two nights combined, so hopefully we are on an upward trend.

Mike will be over in a bit (hopefully with a LARGE coffee), and after the docs come in this morning I will probably try to go home, shower and spend some time with my older two. I think Kate is taking them to Build-a-Bear today to make a bear for Charlotte. Missy is taking Katherine tonight on their "birthday date" and they may stop by here after shopping. If Charlotte is doing well we may bring Katherine up to see her. Will is going to have to wait a few days though as he has a pretty nasty cough. The nurses have said that when the kids come they can have the Child Life people come and bring activities for them to do, as well as explain anything to them that they may have questions about or be nervous about.

Gotta run, resident just walked in. Have a great Friday everyone, and thank you so much for the thoughts and prayers. She has been doing so well, I am almost afraid to say it out loud because I don't want to jinx it!

Pictures...finally!

Birthday Girl!

Waiting for valet parking after their visit last night.

Sleeping peacefully

Chilling after a bottle

Mommy Guilt

Today I got to pick my 5 year-old up from preschool, take a nap with my 3 year-old, and in a little bit hold my 4 month-old for the first time in two days. Sounds like a pretty good day right? These days it is all about the little things.

Yet, I still feel torn. When I am home with Katherine and Will I feel guilty for not being at Charlotte's bedside. When I am at the hospital with Charlotte, it kills me that the older two are missing me at home. I need to clone myself. I know I can't do it all, and I have accepted that, but it is so hard. It makes me feel guilty every time I leave and Katherine cries and hugs my leg and begs me not to go. I missed Charlotte's first feeding today because I (unexpectedly!) fell asleep while laying down with Will this afternoon. More guilt. I thought I would have all this time, just sitting and watching her sleep. Instead, today has been a whirlwind. When I am not running back and forth, I am hooked to my pump. Which provides more guilt. I have high anxiety about not having enough milk for Charlotte when she starts eating frequently. They said after a day or two I will be able to nurse her a couple times a day but the rest will have to come from a bottle so they can measure her feeds.

Guilt is nasty, and compounded with exhaustion it can make a person a bit emotional. Though overall, we are all doing well. Charlotte looks really good this afternoon. She is off of the morphine, and now on super-strength motrin for pain. As I said above, she ate earlier; my mom was able to feed her 2 ounces which she was eager to have. They think they will be able to take a couple of her lines out later and her oxygen has been cut way down. The chest tube did its job and her respiration rates are good. In little bit I will be able to hold my baby, and that will feel so good.

It was fun to pick up Katherine from school today and talk with the kid's teachers and other parents. Their preschool has been fantastic. Everyone has been amazing and Katherine told me that her class prayed for Charlotte yesterday and today. They made sure she had an extra special birthday as well. We gave Katherine a locket with Charlotte's picture in it yesterday morning. She forgot it at school today and one of the teacher's drove it to our house this afternoon because they knew how much it meant to her.

Will spent the morning grocery shopping with Kate. Kate says she has never had so much fun grocery shopping. He "drove" the car around the store and helped her pick out what they needed. Will is such a chill kid and seems to be rolling with the punches. We both fell asleep this afternoon in his bed, with him holding onto my thumb (he has done this with me since he was a baby and I would nurse him while he gripped my thumb with his entire hand). He is so sweet.

The older kids sent a pumpkin back for Charlotte that they colored. We made sure to take a picture and show them that she got it. So sweet.

Mike and his parents are home tonight having dinner with Katherine and Will. My mom, Kate and I are ordering Chinese. Missy is stopping by later as well.

We are blessed and so thankful that so far, so good. I am going to try and get over this guilt, all us moms are too hard on ourselves, right?

I'll post pics later tonight. For some reason I can't get them to send to my email from my phone. Not much of a signal in the hospital.

Our night

Well, one night down, who knows how many more? Different people tell us different things about the average hospital stay for this type of surgery; anywhere for 3-14 days. Quite the range!

Charlotte had a decent first night. They are staying on top of her morphine. Every three hours you can tell it is starting to wear off because she starts thrashing around and trying to pull out lines. She really hates that nose cannula; they finally had to tape it down. She is also trying her darnest to roll over, though that is probably not the best idea right now. I have had to sit next to her bed and almost hold her down to try and stop her from trying to roll. She is a spunky little thing. Her nurse last night was fantastic, though busy, because her other patient required a lot of care as well.

Unfortunately her chest x-ray showed a collapsed left lung. They were shocked to find this because her O2 stats have been 99-100% since surgery. However, they need to relieve the air from the lung so it can expand again. To do this they are putting in a chest tube as we speak. It will probably have to stay in for a few days. They say the cause is probably injury to the lung from surgery and it should heal fine. 

I didn't get a whole lot of sleep last night. The pull out "couch" in her room wasn't much more comfortable than the floor, and they were in checking her almost continuously. However, I am thankful to be able to be with her, and my lack of sleep is nothing compared to what my baby is experiencing.

Oh, what a day.

Surgery day is over. I think this has been the longest day of my life. The outcome, so far has been good. Charlotte continues to do well. Right now they are keeping her pretty drugged up with morphine and tylenol, which has been helping keep her comfortable. She has a ton of lines in, I have learned a lot about hearts, lungs, respiration, etc. The nursing staff here has been fantastic, very patient in answering all of our questions and so caring with Charlotte. During the day she had her own nurse, tonight it is a 2:1 ratio.

Missy brought Katherine and Will to the hospital to see us tonight. We sat in the lobby and had dinner with them. They are allowed to come up and visit Charlotte, but we want to wait a few more days until she is more alert and doesn't have as many lines. Katherine had a hard time leaving, but Kate assured me once they were about 5 minutes from the hospital she was doing better. Mike left about nine to go home and get some rest, but will be back early for rounds.

Hopefully, if all goes well I will go home for a few hours tomorrow when Mike is here, take a shower and spend some time with Katherine and Will. Depending on when rounds are, I may even try to pick her up from school. We promised them that we could watch Katherine's new Tinkerbell movie and make popcorn tomorrow afternoon.

Not sure how much sleep I am going to get tonight, I have quite the chatty nurse and she just put in an order for an latte with a triple shot of expresso. Yowza! I may be in trouble.

I am forming a love-hate relationship with my pump. I have so much respect for people that exclusively pump. I feel like I have been hooked up to that dang thing half of today! Hopefully it will just be for a few days, and then she will be able to nurse again.

I can say it enough, but thank you for all the thoughts and prayers today. Your messages/emails got me through one of the hardest days of my life, and I/we are so grateful.

Pictures to come tomorrow, once I find my battery charger, the thing is dead!

She is in her room.

Charlotte is settled in the CICU. She is doing pretty good. They gave her a dose of pain meds when she first came in the unit because she was wide awake, pulling at her lines, and kicking her feet.

Mike and I have been with her for about an hour. Her nurse is fantastic; she went over everything that we needed to know. Her cardiologist stopped up and we also spoke briefly with the surgeon. Everyone seems pleased with her progress.

Mike and his parents just went to get something to eat, I am pumping once again, and Kate and my mom are with Charlotte. When Mike gets back, we will switch and we'll find something to eat. I have yet to eat today, so I am starving!

They warned us that tomorrow will probably be the tough day pain wise. They will try and stay on top of it though.

It is so hard to see my baby like this, but I keep reminding myself that her broken heart is on her way to being fixed.

Just saw my baby...

she looks good. The were able to extubate her. We gave her a kiss as they rolled her by. We are now just waiting for them to get her set up in the CICU. Once that happens we can all be with her. Thanks for the prayers everyone, they're working.

12PM

They are just closing right now. Shouldn't be too much longer. They will then extubate her, and then move her to the CICU. We will get to see her for just a minute as they move her, and then have to wait another hour before we can go in and be with her in the CICU.

ETA: Just talked to the surgeon, said everything looks great. Repair went well, and so far so good. I am feeling relieved, yet know that she has a long recovery ahead of her. 

11AM

Amazingly, the repair is finished! Much faster than they expected. The nurse said they were just doing an ECHO to check the repair before the close everything. Probably another 1-2 hours before we can see her on her way to the CICU.

10AM update

Everything is going well. She is on bypass right now and they are just starting the repair. It only took about an hour to put all her lines in. So far, so good.

Took her back at 7:30

They took her back almost exactly on time. Saying goodbye to her was probably the hardest thing I have done in my entire life. Mike and I are now sitting in the surgery waiting room with many other teary parents waiting for updates on their children. While sitting in the holding area before they took her back to the OR, I just kept thinking about all the kids Katherine and Will's age that were around us, and how I am so thankful that Charlotte is young enough to not know what is going on, and will not remember this day.

We had to be here at 6 this morning. Missy came to our house around 5:15 to stay with Katherine and Will and take them to school today. I am so glad she is able to take my place right now and make sure all is well with K & W. It is nice not having to worry about them at all. Thanks, Mis.

Charlotte couldn't eat after 1:30AM, so we woke her up to feed her since she usually sleeps through the night. She was a little hungry this morning, but still in good spirits even though we woke her up. We spent an hour waiting around, I bounced her in the baby carrier to help distract her from her hunger, and she took a little snooze. Thank goodness for that dang baby carrier.

The anesthesiologist came and went over exactly what he is going to do, and then his fellow carried her to the OR. First update is about 9AM from the nurse. They will update about every hour. They are hoping around 9 that they will have all the lines in and be ready to start, but it may take longer if it is hard to get lines in.

We are overwhelmed with all the messages, emails, status updates, comments, thoughts and prayers. Thank you, Charlotte (and us) are very, very lucky.

Off to finish pumping...I feel like this is the only thing I can do to help my baby at this point. I look forward to holding her in my arms and being able to nurse her again.

She even looks cute in a hospital gown!

Charlotte's big sister

Katherine is completely in love with Charlotte. I have yet to see a time when she has shown any sort of jealousy or anger towards her sister(I am sure that will come though). It often brings tears to my eyes to listen to her comments or watch her interact with Charlotte. When we found out about Charlotte's Down syndrome, one of my worries was how this would effect her relationship with her siblings. I no longer have any worries. I obviously can't see the future, but truly feel it will all be okay.

Sister love

Katherine's 5th birthday is the day that Charlotte's heart will be fixed. It kills me to think that I probably won't see my little girl on her birthday. Obviously we didn't have a choice, and I know that Katherine will be fine, but it still hurts. Thank you to all of you that are making Katherine's day special tomorrow when I can't.

Five years ago I was just beginning labor with my little girl. It is amazing how much has happened in those five short years.

Happy 5th birthday baby, mommy loves you!

October, 2005

October, 2006

October, 2007

October, 2008

October, 2009

October, 2010

Surgery moved up. It is tomorrow!

Ugh, we got a call this morning saying we had to come right to the hospital for pre-op, that there was a possiblity they would have to do Charlotte's surgery tomorrow(Wednesday) instead of Thursday. Apparently there was a heart transplant last night that threw the schedule off, and there is another baby in the ICU that needs surgery, but isn't ready for it tomorrow. After being told a few different things, they did tell us that the surgery will indeed be tomorrow morning @ 7:30AM.

We went through the pre-op; it took about 4 hours. We had to do blood work, a complete physical, EKG, and chest x-ray, as well as sign all the papers.

We are home now, frantically throwing together an impromtu birthday party for Katherine, since tomorrow is her 5th birthday. I am a bit bummed that this all has to happen on Katherine's birthday, but what will be will be, I guess. Thanks to my aunt and Missy for quickly decorating, wrapping and figuring out a cake and dinner.

Thoughts and prayers for tomorrow please. I am stressed beyond belief, so very nervous. I just pray that everything goes well for my little girl.

I'll update often.

Charlotte's PT update

Charlotte continues to amaze us with her progress! She is now rolling both ways--back to front, and front to back--and we have had to extend her blanket area on the floor because she was rolling off her mat. When she rolls to her tummy she now likes to push up on her arms. Her neck support has improved dramatically in the last few weeks as well. Her physical therapist was really impressed the last time she was here. She has started to bat at toys and we are working on getting her feet up and keeping her arms towards the center when she is laying on her back.

She also gets to wear these very cool, 1980's style, hot pink, spandex shorts that help strengthen her  hips and legs:

Met the Surgeon

Just a quick update...we just got home from meeting with the surgeon that is going to be doing Charlotte's repair on Thursday. I like him a lot. Very confident, yet  not cocky. Made us feel at ease, explained the repair in detail and let us know that it should be pretty low risk. He went through the few risks of the surgery, mainly being a valve leaking later in life (goes up 10% for every ten years, she will have to be followed by a cardiologist her whole life to keep an eye on this) and possible issues that may require a pacemaker (1-2% chance). He also told us that is would take about 2 hours for the prep, 2-3 hours for the repair, and then an hour or so after wards in the OR. He seemed to think that most kids with this repair, with her good health, go home in 4-5 days (though our cardiologist told us 7-10)--lets hope he is right! He also seemed to think the pulmonary hypertension shouldn't be an issue; most kids with heart defects have it, and she shouldn't have any permanent effects from it. I also enjoyed that he used people first language, and didn't refer to Charlotte as a "down's baby." :-)

What can you do to help?

We have been overwhelmed with support the past four months. We are so thankful for family, friends, neighbors, co-workers, etc. that have offered to help in any way they can. We are preparing for probably the most stressful week of our lives, and are learning that we can't do it all on our own.

Many have asked how they can help, and below I have listed some ideas. Again, thank you so much.

1) Donate blood.
Charlotte wil need 6-8 units of blood during surgery, as well as platelets. They no longer recommend direct donation because if she were ever to need a transplant later in life, if she had our blood it may build up resistance and we wouldn't be able to donate. However, there are hundreds of kids at Children's every month who need blood. Consider donating, even though not directly to Charlotte, but to help another child in need.

2) Send an email or leave a comment on here.
We will be in the CICU for at least a week, possibly two. We aren't allowed to have cell phones in the unit due to interference with ventilators. Therefore, phone calls will be limited. We appreciate every thought or message left for us. It is nice to know we are not alone in all of this.

3) Keep us in your thoughts and prayers.
We need 'em. And lots of 'em.  'Nough said.

4) Offer to have Katherine and Will over for a playdate when we get home from the hospital.
While we are in the hospital, we plan on keeping things pretty "normal" for K & W. They will be going to school, a few birthday parties, gymanastics, etc. Mike and I will rotate coming home nights/days, and we will also Kate helping with school pick-up/drop-off. However, after surgery Charlotte will need to stay pretty close to home and be "germ-free" for 6-8 weeks. Because she will be on bypass, her blood will be filtered and her immunities will decrease. Katherine and Will will need some entertainment during this time, and would love an opportunity to get out of the house!

Gratitude

I am a little disappointed in myself lately. I am usually really good about writing thank yous and making sure people know how appreciative we are for gifts, cards, thoughts, etc.

Since Charlotte's birth I have dropped the ball when it comes to writing thank yous. A few minutes ago I realized it has been two weeks since Katherine and Will's birthday party and I haven't even thought about sending out thank you notes.

I can't wait until life returns to "normal." In 5 days the surgery will be behind us, and hopefully I will have time to get back to things that I like and things I find important. Then again, I do have three children, so I may never find this time!

I am off to print off cards to use for Thank yous. I figure I can write them in the hospital to pass the time.  I hope everyone knows how appreciative we are, we are so lucky to have family and friends that care so much for us.

The thank you notes for Katherine and Will's party should get to you by Thanksgiving! Hah!