Little Miss Darcie Do: Who I am.

With her friends on World Down Syndrome Day showing off our blue and yellow DS colors. 

In honor of our 2nd world Down syndrome day with our Darcie we teamed up with the International Down Syndrome Coalition to crash the blogsphere. They are sharing many wonderful blogs about people with Down syndrome. The theme is "Who I am" so we decided to share a little bit about Miss Darcie Teagan O'Daniel. 

The funny thing is that Darcie is still a mystery. Her future is wide open and we don't yet know what she will like or want to do. Just like any other child we will have to wait and see what develops, where she will lead us, and what she will become. 

What we know now is that she is a girl that likes to smile. She is easy going and doesn't complain much but she will tell you how she feels about things. She is a strong fighter with crazy hair and she can light up a room. She likes to dance and snuggle. She has been through a lot but she never gives up.

Rocking lots of socks and her Down syndrome shirt. 

She likes to eat and we haven't found anything she doesn't like yet. Tonight she ate spinach and goat cheese and was fussing at me because I wasn't shoveling it in fast enough. Even though she eats a ton she still weighs less than 12 pounds at 13 months old and does not have a single tooth. She is doing things in her own time.

Our World Down Syndrome Day cake. 

She is really good at holding her head up now and rolling over. We are getting close on being able to sit unassisted. She likes to talk and her favorite words are dada and bub for her dad and brothers. She just learned to shake her head and nod but she just does it randomly. It is really cute. 

She is a sister, cousin, niece, daughter, granddaughter and friend. She is loved and important and never a burden. We are blessed to have her in our lives. 

Lots of socks. Like socks, some people may be a little different, wacky or colorful. They come in all shapes, sizes and colors but we are all still similar no matter what our chromosomes are like. 

Here is the IDSC video Who I Am.

http://www.youtube.com/watch?v=9VG7dh5W40I

Little Miss Darcie Do: The big day. My Dallas vacation

July 17th 2012

Today is the day Darcie gets her broken heart fixed. It is exciting and terrifying all at once. We have spent lots of time together doing family activities and making awesome memories. I hate to leave the other kids but we know the coming days will be difficult and we need to focus. It would be too hard for the other kids to see Darcie right after surgery and too hard for us to take care of everyone in a crowded hospital room in the CICU. Taylor, Cameron and Kaylynne are staying home with Grandma, Tabitha and Sarah to watch out for them.

Things got stressful before we even left for Dallas. We have double insurance for Darcie and the two companies were disagreeing about where she should go for surgery. Her primary insurance wanted Dallas and secondary wanted Tulsa. All of our doctors told us Dallas was the place to go so that is where we decided to take her. Secondary insurance tried to reschedule her surgery for many weeks later in Tulsa and I threw a fit. She can't wait for surgery. Now secondary insurance is refusing to pay their part because we wouldn't change plans for them. The insurance companies and the hospital can fight it out. I am doing what is best for my baby and she needs surgery now. Her cardiologist said we can't wait and we will not.

We spent Sunday at the water park with the family so we could all be together having fun. We planned to leave for Dallas Sunday evening and stay at Ronald McDonald House that night. We had to be at Children's Medical Center at 7:30 on Monday morning for pre op testing. After we had it all planned we found out that to stay at RMH we had to be there early for check in and tours. We would have to leave no later than 2:00 in the afternoon and we would have missed our last family day together. So we turned down the room for Sunday night, spent the whole day with the kids and left for Dallas at 3:00 AM. It was worth driving all night and no sleep to get an extra 12 hours together. We arrived at the center just as the sun was coming up. We drove right to our early appointment, arrived at 6:30 AM (an hour early) and got checked in for testing. It was freezing in the cardiac unit even though it was July in Dallas. The air conditioner was broken and wouldn't turn off.  We had sunburns from the water park and had not slept the night before. We looked pretty rough but we were glad to be safe in the place where they would fix Darcie's heart.

Dad looking worried and tired. Waiting in cardio clinic to start pre op testing.

A little geek humor to try to lighten the mood.

Waiting to be sedated for Pre Op testing

So tired.

The plan was to do a sedated EKG and ECHO then send us to RMH to rest. Darcie was supposed to come back the next morning and be admitted for surgery in the afternoon. When they sedated her for her tests she had a reaction to the chloral hydrate and her blood pressure and respirations dropped. They had to stop the testing. The room filled with people who were working on her and they needed her to wake up. It was terrifying. They had us rub her body all over with a cold wet cloth to try to get her to come out of it. It took a long time for her to start to wake up. They decided she was too fragile and admitted her early and moved her surgery time up. 

This was just before it all went wrong. 

Come on Darcie you can do it. Wake up!

Still out. You can tell I was stressed by my clenched fist. 

Scary asleep.

Cold wash cloth made her angry but that was a good thing. 

Finally starting to cry. Mommy was rubbing her with a cold cloth and Daddy was watching her monitor.

EKG

After getting over that scare we stayed in her room and finished surgery prep. We didn't really sleep. I remember pacing a lot and taking lots of pictures of my sweet girl. I just wanted to hold her but she was hooked up to everything so I spent a lot of time holding her hand and kissing her. She was vomiting a lot and she was so tiny but she still held on tight to our hands. We had a good laugh when they tried to get a urine sample with a urine collection bag. She kept peeing out the side and making a big mess. I finally held her in the air when she started to go so it would go in the bag. Then we had to wait, with Darcie naked, dangling in the air, for the nurse to come remove the bag. 

We were worried about her being sedated after the experience the first time. The staff told us they had called in their best anesthesiologist and he knew her history. The nurse said this was the guy the staff always called when it was their own family being treated.

Admitted to the Cardiac floor until surgery.

Darcie and Daddy love. 

I Heart My Cardiologist socks from Socks 4 Surgery. 

Grandma love.

Hanging with her Tubie Bear. 

Kisses.

Holding Daddy's hand.

Holding Mommy's hand.

More kisses.

They sent the hospital pastor in to speak with us. When it was time to take her to surgery he walked with us. He was trying to comfort us but he let it slip that he had been sent to us and one other family who were going in for very serious surgery that day. It made me nervous that our situation was that serious, that they felt we might need extra help to deal with the events of the day. I was determined to hold back the tears and be strong for my girl but turning her over to the nurse and walking away was the hardest thing I have ever done. 

Walking to the surgery floor.

Waiting for the call. 

Darcie's patient file.

Sing to me Daddy.

Technically we were in surgical waiting room #13. They decided to skip that number though so it goes from 12 to 14.

Got your nose Dad.

These are the pictures the Pastor took of us. We wanted to have one more of us all together just in case. I think we faked smiles pretty well. 

Beautiful girl.

Here we go.

One last kiss.

Our last glimpse of her as she heads back with the nurse.

Darcie is a super tough, strong, determined warrior. Our little wonder woman kicked CHDs butt. She had a amazing medical team to help her. She is such a fighter she went through surgery in record time. She did excellent in recovery and instead of being admitted for three to six weeks she was released the same week. 

Here are the surgery updates I sent from the hospital:

Surgery updates

July 16 2012

6:47 am We arrived safely. Sitting in cardiology clinic waiting for them to open.

at Children’s medical Center

5:15 pm

5                        Finally getting a chance to update. The phones don't work up here on the 8th floor so I haven't been able to call, text or update. First let me say Miss Darcie Do is fine and sleeping comfortably. We are on the cardiac floor in room 8265, admitted a little sooner than planned.  The hospital is amazing. Wonderful staff, beautiful facility and I am 100% certain we are in the best place for Darcie to get treatment. It is freezing here which is odd with it being summer in Texas. The central air works very well and we need to go purchase sweatshirts or we will freeze in the rooms. It seems the system is malfunctioning and the air conditioning won't shut off. It is an interesting mix to have goosebumps along with our sunburns. We met Darcie's surgeon and love him.  

Meeting Darcie's surgeon. The man who would soon be holding my daughter's heart in his hands.  

5:35 pm   
       

We have had a change in plans. Miss Darcie gave us a bit of a scare this morning during pre op testing. When they sedated her with Chloral Hydrate she had a reaction to it and went into a very deep sleep and her blood pressure dropped too low and her O2 was lower than we liked. We suddenly had a room full of people working on her and they were whispering so that I couldn't hear what they were saying. That's not a good sign. What I could hear I didn't like. They were talking about the massive size of her VSD and low pressures. They kept saying she was too fragile and talking about her heart failure. They had to cut the Echo short and skip the sedated EKG. She needed to wake up fast or we might lose her.

It took way too long but she finally came out of it and we got her pressures back up. They were able to get what they needed from the Echo and did an EKG after she woke up. We are cleared for surgery but they will be watching her even closer. Instead of spending the night at RMH they admitted us. They said she is too fragile to go anywhere at this point. She has been vomiting a bit but mostly sleeping. They said she is dehydrated so they are giving her fluids. She has her IV placed and they moved her surgery up. She bumped the surgery that was scheduled to be first tomorrow as hers is more urgent now. She will go in at 7:30 AM instead of the late afternoon. She now weighs 7 pounds 2 ounces. Surgery is expected to take 4 to 6 hours. We were told to expect to stay in the hospital for 3 weeks or longer.

And we have informed her she is never allowed to scare us like that again.

8:48 pm  
     

Saw all of the different team members who will be working on Miss Darcie in the morning and she is still cleared for surgery. Going for an X-Ray soon. I am feeling a bit anxious but holding it together pretty well. Mom and Harry have gone to RMH to get us checked in. I refused to go to because the thought of leaving her made me burst into tears. But I will try to sleep in the hospital room.

July 17 2012

4:30 am     
  
They did her last surgical scrub at 4 AM and they started her IV fluids for surgery. Won't be long now.

9:14 am

We handed our little bundle over to the surgical team at 7 am. We just got our first update at 9. Doing well and she was talking to them until they knocked her out. Got the 2 additional IVs installed with only 2 sticks a piece. That's pretty good for her. The hospital just delivered a huge stack of emails for Darcie. Thank you all.

10:05 am

Wow. 10:00 update. Her heart is repaired. They have finished patching the holes in record time. They are double checking to make sure she has no leaks and then they will start to attempt to close her up. Little Miss Darcie Do is a superstar!

In the CICU family waiting room. Waiting for our next surgery update call.

10:32 am

Makes my heart very happy to see my beautiful baby on the IDSC For Life site this morning. It brings her family much joy to look at this photo while she is in heart surgery. This photo was taken the day before her first hospital admission for failure to thrive. She was admitted and got her NG tube the next day.

11:09 am

11:00 update is the best ever! We got to see her. She is finished and she did great. We got to peek at her when they wheeled her from OR to CICU. I touched her little leg. It is a very strange feeling to ask permission to touch your own baby but we were so worried about doing anything that might hurt her. She will be getting settled for about an hour and then we can go sit in CICU with her. I am so happy!

Waiting in the hallway to see her on her way from OR to CICU. Looking a bit anxious. 

Here she comes!!

Our first glimpse of her. She is a bit swollen but that's our girl. 

11:23 am

They are moving us into the cardiology ICU room number 207. We will be in there in about an hour.

Settled into her room. Her eyes are open but she will be unconscious for a while. They have put lubricating gel in her eyes so they don't dry out. 

2:07pm

2:00 update. Darcie is amazing and so is her surgical and recovery team. Her blood pressure is a bit high and her hemoglobin levels are low but everything else is better than expected. Low drainage and swelling at this point although that may increase as her body recovers from the trauma. They closed 2 of the 3 holes. They fully closed the large inlet VSD with a dacron patch and sewed the ASD closed. The muscular VSD was small and hard to get to so they left it alone. It would have required a larger incision to reach it. It should close on its own eventually. They were able to fully close her chest. She looks wonderful. So much better than what we had prepared ourselves for. She is responding to our voices and touch already. They are giving her morphine so she is not in pain. She is just resting. I had to leave to get checked in at RMH. Grandma is keeping her safe. RMH is so beautiful. I feel like I can sleep for a while now and not worry so much. The stress is easing. My Darcie is ok. I have no words to describe how happy I am.

Surgery notes. 

Darcie with all of her equipment. 

That's our girl. 

Talking to Darcie's awesome nurse. 

This picture always makes me cry. We had been so worried for so long. We finally felt like she would be OK and we had a big celebration hug. So many emotions all at once. Most of all relief.

Our first look at her battle scars. Top is surgery incision, right is the two sets of pacemaker wires and left is chest tube. 

Breathing tube removed now on oxygen. 

She didn't get to wear her onsie or socks for a few days but the hospital staff loved them. 

4:50pm 

at Ronald McDonald House of Dallas.

Thank you RMH. You are amazing! I got some good sleep for the first time in a while.

July 18 2012

11:47am

Sorry we have gone so long without an update. Things have been very busy and my phone doesn't work well in the hospital. Darcie had a rough night. She was hurting and had to have morphine 4 times during the night. She has settled down now and grandma is watching her. Harry and I have come to RMH to sleep for a little and eat. It's hard being in the CICU because you can't bring food in and they don't have a bathroom or shower in the room. We have to leave for all that stuff. I can sleep some in the room but it’s in a chair and not very restful. We may get to move to the regular floor tomorrow if she keeps doing well. They are moving us to a different CICU room today. They need the bigger room close to the RN station for another child that needs to be watched more closely. In hospitals I have found that the bigger the room is the more serious the health issue. So I am glad we are moving to a smaller room with less equipment.

Your own blanket, toys and a pretty hair bow makes things a little better. 

Removing the chest tube.

After bandage change, chest tube removal and stitches, and getting her pacemaker wires tubed and taped she wasn't very happy. 

It was good to see her awake enough to get mad at the doctor. 

Do you want to hold her? Yes more than anything! 

Don't cry momma!

Daddy's turn. As soon as he got her she put her hand on his face.

She even opened her eyes to look at him. You can see her hair is as spunky as ever standing up in a curl.

The look on her face says a lot. I think she was telling daddy what a hard day she was having. 

Grandmas turn. 

Look at that sweet face. She was worn out. 

July 19 2012

1:34am

Nursing tip 101: Do not tell an emotionally fragile mother that she can't see her baby who just had open heart surgery. It causes panic attacks and tears.
I have been very happy with everyone here and they have taken good care of us. But this is my first gripe.
Nursing mothers get a food tray delivered for free. This is especially important in the CICU because you can't have food in the rooms. They deliver food to the waiting room and you can step right outside and eat. You have to be in the computer system as approved for that or they won't deliver and you have to go down to the cafeteria to get food and eat. That takes way too long for this momma. I don't want to be gone that long. I called today to get my tray and they said I wasn't in the system and they couldn't help me. I have been in the system and getting food delivered since Monday. They said no they will not deliver.
So Harry brought me some food when he came back. I went out to eat it real quick and they locked me out. Told me I couldn't go back in for a half hour. I tried to call Harry and have him and our nurse let me in but he didn't answer his phone (phones are kinda spotty here.) Then I got worried that something had gone wrong with the baby and I had a right proper melt down.
When I finally got back in I said I would not leave again and I have refused to set foot off of the CICU floor since.
The nurse checked and said I am still in the system and that shouldn't have happened. I am ready to get out of CICU and go to a real room.

2:40am

Darcie update: They moved us to a different CICU room. We are now in room 3212. This is our 3rd room change in 3 days. They had discussed moving us out of CICU today but her blood pressure is still too high. They are giving her more meds to try to control BP. They removed her breathing tube on the 17th and had hoped she would have good O2 just on room air but she still needs oxygen. She is down to 1 liter though. They also removed her chest tube and catheter on the 18th. They took out the two IV lines in her groin and she wiggled out of the IV in her right foot. So she is more comfortable with less tubes bothering her. Her lungs are a bit wet and goopy after removing the breathing tube and chest tube and she had to be suctioned a few times. As of 4 AM Wednesday she is getting formula through her NG tube. She got a visit from PT and ST. PT gave some tips for positioning her. ST tried to get her to take a pacifier (not happening) and a bottle (Darcie said no way). So unfortunately she has a major gag reflex and some oral aversion issues. Hopefully we can work on that because I would really like to see her start nursing again. She was too upset today though. We got more details about her surgery as well. While they were in there they had to do a small repair on her tricuspid valve. They had to cut part of it to reach the holes to repair them. They were able to do the mini Sternotomy so she has a smaller incision. She is making good progress and is happier tonight. Not needing as much pain meds and sleeping better. Also she had a major poop so her tummy is doing better. The best part of the day was that without so many tubes we were finally able to hold her. I sat with her and rocked for several hours and so did dad and grandma. She still loves to snuggle even with all that she has been through.

Pacemaker wires out.

Getting a poopy changed. 

Feeling better. It was so good to see that smile again.

I think she likes her Elmo balloon. 

2:24pm

Miss Darcie is doing so well they have moved us to the regular cardiac floor. We are now in room 8270 and hopefully we are done moving around now. We had 4 different rooms in 4 days and we are ready to be settled. We can now eat in the room and it has a bathroom and a couch to sleep on. They removed Darcie's pacemaker today. No heart block so she doesn't need the pacemaker. She is still a bit goopy and needing to be suctioned but her chest x ray looked better today. Her blood pressure is still a bit high but getting better with the med adjustments. Yay Darcie. You are super girl. We can have visitors now so hopefully soon we will see everyone. We all have missed each other. The kids made videos for Darcie before we left and when I play them for her she turns to look at them and seems to feel better. We sent Darcie's photo to them and Cam said she still looks cute even with all that stuff on her face. Kay wanted to carry the picture so she could hold Darcie. So cute!!

On the move one more time. Onto the regular cardiac floor. 

All settled. Glad to be back in a big crib. 

11:42pm

Darcie now weighs 7 pounds 9 ounces. Some of that may be fluid retention but it's still pretty exciting. She is off oxygen and now breathing room air and her O2 levels are above 90. And she got visitors today. She saw her brothers and sister and grandma Jo and Aunt Tabitha. Awesome day. She is still doing amazing.

A few of Darcie's get well letters from her friends.

Siblings visit. 

Grandma Jo visit. 

Tabitha visit.

Taylor holding his smallest sister.

July 20 2012

8:31am

Doctors just did rounds and said Darcie is making everyone’s job easy. She is doing so well we are amazed. We got to see her X-rays from this morning and her lungs look clearer. They explained the Mini Sternotomy incision to me. They saw through the sternum to open the ribs and when they put it back together they hold it all in place with wires. We saw the wires in the X-Ray. They look like figure eights. Because there is no muscle right above the sternum the incision is less painful. Her blood pressure is good. They did labs this morning and are checking on hemoglobin levels. She is no longer on Digoxin or antibiotics. They switched from morphine to loritab and tylenol for pain and she hasn't needed much of that. They are saying we may get to discharge much sooner than expected, maybe next week.

Happy and settled in the big crib.

Free from IVs!

One more echo.

10:57pm

The doctors shocked us by discharging us today. They said she is doing so well she doesn't have to stay for another week. Great news but I was feeling a bit overwhelmed by the sudden change of plans. The speech therapist had just been in and told me she would see us 4 more times so we could work on getting her off the NG tube. That's not going to happen now. We didn't have the medication we needed and one of the prescriptions needs to be compounded so it takes a while. We needed to get her feeding pump set up. We were very unprepared. We went to RMH to regroup. Darcie did not do well in the car seat. Even with padding the straps and loosening them they put pressure on her chest and hurt her. She has been screaming and we can't get her to stop. The loritab doesn't help. I'm not sure what to do. The hospital said to bring her back if she was in pain. If she cries a lot her heart rate and blood pressure go up and her O2 goes down. She has been crying for 45 minutes, she is sweating and red. I hate to drag her and the other kids back over there and sit in the ER all night. Looks like Harry is going to bring her over to the ER by himself while I stay here with the sleeping kids. She was actually in the hospital longer for her NG tube placement than for her heart surgery. I am all for getting out of here but this makes me worry that we are moving too fast.

Ready to leave the hospital. She is wearing the outfit we had planned for her to wear home when she was born but it was way too big for Miss Tiny. It was still a bit big at almost 5 months but we made it work. 

Kay got to pick out a beads of courage discharge bead for Darcie. 

She got a shamrock because she is our lucky Irish princess. 

Love these lights and the butterflies. 

July 21 2012

12:10 am

Harry and Darcie are at the hospital and she is being seen. Of course she fell asleep when they were walking back to the exam room. I still think it is good to get her checked though. The nurse told Harry he was right to bring her in. Harry said Darcie was blowing raspberries at the doctors. 

10:55 am

The doctors checked Miss Darcie out early this morning and said she is ok just having some trouble with pain. They said we should limit travel which is difficult with a four hour drive to get home. RMH is letting us stay another night. Hopefully an extra day to rest will make it easier for her to tolerate the drive. 

8:51 pm

Medieval Times Dinner & Tournament Dallas

Turns out this is 5 minutes from RMH and we had the opportunity to attend. Pretty cool.

10:24pm

It seems we hadn't had enough excitement this week so we spent the evening with Dallas EMTs. Not for Miss Darcie this time but for Mr. Cameron. We had the opportunity to go to the Medieval Times because it is 5 minutes from RMH. 20 minutes into the show Cameron had a severe allergic reaction to the horses. Swelling, trouble breathing all the fun stuff. We stepped out and asked where we could get some benedryl and the manager insisted on calling the ambulance. Cam got a breathing treatment and they wanted to transport him to children's medical to be checked. We decided to take him home and give him allergy meds. He is doing better now. They gave us free passes so we can come again next time we are in Dallas. I am ready to go home now.

July 22 2012

2:40am

Miss Darcie had a much better day today. We rested a lot and she has been smiling and happy. Cameron is feeling better after his adventure at medieval times. We are ready to get home. Plan is to leave after lunch.

1:19pm

Heading for home!

5:20pm

Jennifer was at O’Daniel Castle.

We are safe at home!

July 23 2012

8:35pm

Today is our first day back home after heart surgery. It is also Miss Darcie's 5 month birthday. It also happens to be 1 year from the day we got the phone call from the doctor letting us know Miss Darcie existed. Pretty exciting events.