Monday, October 25, 2010

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.

Sunday, October 24, 2010

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/

Friday, October 22, 2010

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!!

Thursday, October 21, 2010

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.

Tuesday, October 19, 2010

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.

Monday, October 18, 2010

We are going home!!

video

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

Sunday, October 17, 2010

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

Saturday, October 16, 2010

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).

Friday, October 15, 2010

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!

Thursday, October 14, 2010

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.

Wednesday, October 13, 2010

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!

Tuesday, October 12, 2010

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.

Monday, October 11, 2010

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." :-)

Sunday, October 10, 2010

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!

Saturday, October 9, 2010

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!

Thursday, October 7, 2010

Surgery Logistics

A week from now, at this time, my 4 month old will be in the middle of open heart surgery. It makes me physically sick every time I think about it. I wish I had a little compartment in my brain that I could put all the thoughts and worries of surgery and recovery in, and be able to go on with my life without it effecting me. I am trying, I am really trying.....not so much for me, but for Katherine, Will and Charlotte. Man, it is hard though. I can't seem to find that compartment.

Many people have asked questions about the surgery and what it involves. Next week will be busy for us. Monday, we meet Dr. Tweddell, the cardiac surgeon that will be performing Charlotte's surgery. He will walk us through the surgery and answer any questions we have. Wednesday, we go in at 9AM for pre-op testing. This will include bloodwork, an EKG, and a chest X-ray as well as signing all of the consent forms. We were told to plan on this taking 3-4 hours. Wednesday is also Katherine's 5th birthday, so after the pre-op testing Mike is taking the rest of the day off so we can do something fun to celebrate. Thursday, the day of surgery, we have to be at Children's at 7AM, surgery is scheduled to start at 8AM.

The surgery itself should take between 4-6 hours, however the actual repair will only be a portion of that. Charlotte's defect is pretty complicated, but in a nutshell, she has a couple holes that need patching as well as one "common" valve that needs to be made into two. According to the cardiologist, the holes will be "easy" the valve work, not so easy. The first hour or so will be spend putting in all the lines and having the anesthesiologist sedate her. It will also take time before and after the repair for bypass. Surgeons can't work on a beating heart, so she will be on bypass for the surgery. For some reason, this is one of the scariest parts for me. After surgery, they will do an echo and she will stay in the operating room until they think she is ready and stable enough to be moved to the CICU (cardiac ICU). She will most likely stay in the CICU for her entire stay, unless they need a bed and she is stable enough to move to a different unit. It is nice that Children's has a separate CICU, as she will not be grouped together with kids coming in with different types of infections that may be contagious and dangerous for her to be exposed to. Depending on how she is doing, she may or may not come back from the OR on a vent. Because she has Pulmonary Hypertension, chances are she may need to be a vent for a few days.

We are looking at at least 7-10 days, possibly two weeks in the hospital. We took a tour of the CICU a few weeks ago; the facilities there are pretty new and really nice. The parents can room in with their child , and each room has a private bathroom for their use as well as a pull out couch. We plan on having one of us there the entire time she is in the hospital. As far as visitors go, we have to fill out a list of who we approve of during the pre-op. We are sticking mostly to grandparents; Katherine and Will are allowed to visit because it is not cold and flu season, however we are going to play it by ear and see how Charlotte is doing. Maybe after the first few days when she is off the vent and most the lines are out, we don't want to scare them, but I do think it is going to be hard for them not to see her for that long.

There is a 90% chance that this is the only surgery she will require. If, for some reason, the valves are still leaking, she may have to have another open heart surgery as a teen/young adult. We pray that this isn't the case. Our cardiologist was very insistent on having Dr. Tweddell do the surgery because "he is the best." She believes that, even though the other pediatric cardiac surgeon is very good, Dr. Tweddell is Charlotte's best shot at not having to have another repair in the future. Fingers crossed.  It gives me a little bit of peace of mind knowing how highly ranked Children's heart center is, and what fantastic doctors they staff. I have said this before, but we are truly blessed to be 15 minutes away from that hospital.

I will be updating this blog often while she is having her surgery and then during recovery. We are not allowed to have cell phones in the CICU, so any messages left on here or emails are much appreciated!

For those wanting to know more than the "just the basics" of her defect, here is a great resource:
http://www.cincinnatichildrens.org/health/heart-encyclopedia/anomalies/avsd.htm

Wednesday, October 6, 2010

Glee

Did anyone see Glee last night? I am a big fan of the show, and yesterday's episode was especially good. Sue Sylvester, the character played by Jane Lynch (who is hilarious!), has a sister with Down syndrome. Throughout the episode we learn that Sue's sister is the reason Sue doesn't believe in God. She feels that God had let her down, because all throughout her childhood she prayed to him to help her sister "fit in," yet her sister still struggled.

Since watching this I have been thinking about what Charlotte's diagnosis means for Katherine and Will. In my optimistic little world that I have been living in, I tell myself that things are different and society has become more accepting to those with disabilities. It angers me to think about my children having to face such adversity; so I choose not to. Charlotte will have plenty of challenges in her life,  and it hurts to think that so many of those challenges may be due to others perception of who they think she is and what they think she should be.

The moral of the story? Stop judging. Stop generalizing. Put yourself in the place of someone else before you make assumptions. Be kind. Practice acceptance. And teach others to do the same....

A little bit of kindness goes a long way.


If you want to check out the episode, here is the link. The last ten minutes were particularly good :-).
http://www.hulu.com/watch/181761/glee-grilled-cheesus

Tuesday, October 5, 2010

Expect, Don't Accept

I posted this link on my FB status a few weeks ago. Those of you who haven't had a chance to look at it, I urge you to take ten minutes and read it. This keynote address summarizes a lot of my thinking the past few months, and applies to more than just individuals with Down syndrome.

 http://www.xavier.edu/familyresiliency/paul-daugherty-keynote.cfm

Monday, October 4, 2010

Don't touch my baby!

The title of this blog is pretty rude, and I apologize. I promise, I am not trying to be rude, I am just trying to keep Charlotte healthy.

I have never been a germ freak. When my two older kids were infants, I didn't make a big deal about washing hands before holding them, or staying away from those with colds. As they grew, I became a fan of the "5 second rule" and let them eat food that fell on the floor.  I never used those antibacterial wipes to scrub down the shopping cart before putting my toddler in it. We have been lucky, they have both been really healthy. I can count one on hand the number of times they have been on antibiotics. Maybe I have built up their resistant from all the grime covered goldfish?

Charlotte has changed me. I am a germ freak. It is so important that she does not get sick. At this point, any illness, no matter how insignificant, could delay surgery. After surgery, her immune system will be compromised and any illness could land her back in the hospital.

I apologize to all you who have wanted to hold and snuggle my baby. And to those of you who want to get a good look at her, but all you have seen is her crazy hair peeking out over the top of the baby carrier and occasionally her big eyes. Keeping her in the baby carrier is my way of nicely telling others to keep their hands off.

There will be a time when all of the health issues are behind us and I will be more willing to share baby snuggles. Until then, know that I am not trying to be rude, just trying to do what is best for Charlotte.

Also, I get a lot of questions about what kind of baby carrier I am using. It is called a "baby beco." It is actually Missy's carrier; after she had Sam she became a baby carrier addict and purchased a few different styles. Lucky for me, she has another one she likes for Sam, so I get to use the beco. It is super comfortable (I can wear it for hours and my back doesn't hurt), Charlotte loves being in it, and Mike will even wear it. I highly recommend it-- http://www.becobabycarrier.com/index.asp

Sunday, October 3, 2010

People first language

A few weeks ago the physician overseeing Charlotte's CT scan asked me if Charlotte was a "Downs baby." I simply replied, "Yes, she has Down syndrome." However, inside I was fuming and had to stop myself from educating this doctor about people first language.

As part of my undergraduate program I had to take a class aimed at teaching those going into regular education about students with disabilities. I had a wonderful teacher who had one goal; to make sure each of us walked away understanding and using people first language.

So, what is people first language? In a nutshell, it is putting the person before the disability when you speak. For example, instead of "autistic boy" you would say "a boy with autism." Instead of "disabled person" you would say "person with a disability."

What is the purpose of this? To recognize the person before the disability. To show that the disability is just a portion of who they are, not all off them. Ten years ago, sitting in that college class, I never knew that something would be so personal to me. After having Charlotte, I feel even more strongly about this. It is something very, very simple that everyone can do to show respect to those with disabilties. I know that this world today is a tad obsessed with having to be politically correct and some may think I am being overly sensitive. However, this is something so SIMPLE that shows so much respect, what would be a reason not to use people first language?

When I look at Charlotte, I don't see Down syndrome. I see a little girl that smiles with her whole face (I love the way her eyes crinkle when she smiles!) and has the same big eyes as her big sister. She is not a Downs baby, she is a baby who has Down syndrome.

And, if you don't believe me about the eyes, check out these comparison pics of my girls:

Katherine, 3 months

Charlotte, 3 months

Saturday, October 2, 2010

DSAW Down syndrome awareness walk

Last Sunday was the Down syndrome awareness walk at the Milwaukee County Zoo. Missy-my best friend, my rock, my support, and so much more-organized a team for Charlotte. "Charlotte's Web" raised over $1500 for Down syndrome awareness, and had over 90 people walking for Charlotte. I am overwhelmed with gratitude for all who participated. I gave out a letter at that walk that encompassed a lot of what I have been feeling the past few months. I have pasted it below, as well as some pictures-courtesy of Cassie Stock (thanks so much for helping Missy!!).


September 26, 2010

Dear Family and Friends,

We want to express our gratitude to you today. Words cannot express the appreciation we feel towards everyone here, and wish that we could thank you all individually for raising money and awareness for individuals with Down syndrome.

Almost 4 months ago, when the doctor told us that Charlotte had Down syndrome, I had a hard time imagining our lives ever being the same. I was devastated, all the hopes and dreams I had for Charlotte seemed to fly out the window.

Today, I still feel that our lives have been forever changed, however, I am hopeful. I have spent the past 4 months researching, reading, talking and emailing other parents of children with Down syndrome, and most importantly enjoying my newborn. Some things I have learned:
  • Charlotte, and other children with Down syndrome, are more like “typical” children than they are different.
  • I cannot predict Charlotte’s potential and future, much in the same way that I cannot predict what Katherine and Will will be like. One day at a time.
  • People with Down syndrome can and do hold jobs, go to college, become successful, get married, form positive relationships…
  • Our hopes and dreams for Charlotte are not what is important, instead we must wait and see what her hopes and dreams are, and then encourage her to go after them.

Today is all about raising awareness for those with Down syndrome. A few months ago, I knew just a fraction of what I know today, and obviously my prospective on things has changed. I urge everyone here from now on, to concentrate on what a person can do, not what they can’t. See a person for who they are, and not what disability they may have. I look at my beautiful daughter, and I don’t see Down syndrome. I see a spunky, happy, smiley almost 4-month old with crazy hair! I cringe when people ask me if she is a “down’s baby.” I want to shout, NO! she isn’t a Down’s baby, she is a baby that happens to have Down syndrome. Down syndrome is only a tiny portion of who she is, one tiny little chromosome should not define a person.

Again, thank you, thank you, thank you! A special thanks to Missy, my “rock” through all of this, for organizing everything today. We are so lucky to be surrounded by so many people that love and care for Charlotte, and for us.

Love,

Emily, Mike, Katherine, Will, & Charlotte










Friday, October 1, 2010

Today's Cardiology appointment

On the way home from Charlotte's appointment today, I decided I definitely needed to start some sort of means of communication to keep family and friends informed. I have been overwhelmed by the support and concern, and at times exhausted at the thought of all the phone calls/emails I have to make after each doctor appointment. I hope this blog solves the problem :-).

Today was our last cardiologist appointment before Charlotte's surgery in a couple weeks. I was prepared for this one, having been through 4 appointments with the cardiologist in the past. They are intense. The doctor is fantastic, I have complete faith in her. She is very knowledgable, and spends about 45 minutes with us each time discussing test results, talking about different options, and answering questions. She explains everything in a lot of detail, using diagrams and anything else necessary to help us understand. Over the past four months I have learned what a complex organ the heart is, and how lucky we are to be so close to one of the best pediatric heart centers in the country. At the end of these appointment I am exhausted--emotionally and mentally.

Today was no different. We started by doing a chest X-ray, which went much better than the last one. They used a contraption that looked like a chair to strap her up, rather than laying her on the table under sand bags. I thought she would freak, but instead she sat there with a big grin on her face. After that they weighed and measurde her--she is up to 11 pounds 12 ounces and 24.5 inches long. Unfortunately her weight gain has slowed down again, to 9 grams per day, so we now have to up the fortified breastmilk to 27 calories an ounce. This was a little frustrating to me, because she seems to be eating so well, but I know the reason is because her body burns so many calories due to the heart defect that she needs a little boost.

The doctor spent 45 minutes or so going over her tests that she had done last month. She had presented Charlotte's case to the cardiac board yesterday, and they all agree that it is indeed the best time to do her surgery. After her last ECHO, they found that her VSD (hole in between the bottom chambers of the heart) had shrunk considerably. This concerned them because she is still showing symptoms and she also have increased pressure in her lungs (also known as pulmonary hypertension), both things that shouldn't be happening with the size of the hole. To make a long story short, we did a barium swallow and a CT to rule out a vascular ring (which they did), and we also did a sleep study to rule out sleep apnea (which she also does not have). They came to the conclusion that there is not a cause to her Pulmonary Hypertension, so therefore is is Primary PH, not secondary. For some reason, in kids with Down syndrome they see a lot of cases of PH for no apparent reason. This causes some concern for surgery. It may extend her stay (we are looking at up to two weeks now), as well as the time she has to stay on a ventilator, until they are able to get the PH under control. They use a couple different drugs to shrink the vessels in the lungs after surgery. The good news is that most cases of PH are reversible if caught early enough, which is why they are doing the surgery now.

We are done with appointments until we meet with the surgeon on October 11th. We are trying our best to continue life as normal around here, for the sake of Katherine and Will. They know that Charlotte is going to be having surgery in a few weeks to fix her broken heart, and that she is going to be in the hospital for awhile. They are excited to have Aunt Kate come and stay with them and take them to and from school.

One month from now this will all be over. I will I could skip the next month, some days I am not sure I can handle anything else, but then again, what choice do I have? One day at a time.

Let's start at the beginning


Charlotte Kenlyn Cornell graced us with her presence almost three weeks early on June 9th at 4:05pm. I started labor with her on my 30th birthday—what a birthday present! She was 7 pounds, 4 ounces and 21 inches long.

The day after her birth, Charlotte was diagnosed with Down syndrome. This came as a shock to us, as we did not have a prenatal diagnosis. A few days later, while still adjusting to the Down syndrome diagnosis, we found out that our little girl also has heart disease. She has a condition called AV Canal, which will require open-heart surgery on October 14th. As of right now, Charlotte's health has been pretty good. She is a darling baby with quite the personality. Charlotte smiles easily, is really laid back, and her new favorite trick is rolling over. She is also a champion sleeper (which Mike and I appreciate!).

We have been through many doctor's appointments the past few months. I feel as if we have visited almost every clinic at Children's hospital! Well, not every clinic--just Cardiology, Gastronology, ENT, Plastic Surgery, Genetics, and Pulmonology. Add in a barium swallow, a few chest X-rays, a sleep study, a bunch of blood work, a couple echos, and a CT and it makes for a fun summer!  However, from all of these appointments we have learned more about Charlotte's heart condition, as well as a few other minor health issues. Right now the biggest concern is obviously her heart, but also her Pulmonary Hypertension. Hopefully both of these things will be improved after surgery. Eventually she will also need surgery to separate two fingers on her left hand and two toes on her left foot that were still fused at birth (this is not related to Down syndrome, she just got lucky...insert eye-roll here!)

 Check back frequently, as it is easier for me to update here then to send individual emails or calls. We truly appreciate all the support--through calls, emails, gifts and meals, and your thoughts and prayers. I also would enjoy any comments left here, those of you who know me know how "web obsessed" I am! We blessed to have so many people that care so much for Charlotte. 

I will update later tonight about her appointment today. We are off to dinner and to shop for the multiple birthday parties Katherine and Will have to attend in the month of October! 

Oh yeah, and just because I love this picture....my beautiful girl: