We are home,you have no idea how great home is until you can't go there.Home is where we feel safe,and where we heal.I won't forget how lucky we are to to keep this little girl.I see in her ,a will to live,I mean really fight to live and make it look easy.We all wake up everyday and assume our heart will beat,carry oxygen to our body and do what we do,but we should all realize how lucky we are to have today and tomorrow.I saw so many children who fight for every day they have at that  hospital.They have much less quality of life than we have everyday,but they smile,and don't complain,they are just happy to be living,and say hello to a stranger.I am so very gratefully for my children,and that I get to learn so much from them.I am so gratefully for so many people who care about us.Hug your kid's everyday! Thank god for kid's,and thank god for all of you who care about this little girl with the new heart that won't give up.

Bless her heart forever and ever !!!!!!  everever!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!

OK,mommy needs to take an anxiety pill and get something done here!I need to get something done because I am losing it!

I found the doctor who is in charge of Preslee's post surgical care[lucky],and asked her if there is anything we can do,she is not getting any care for the things that concerning .She said her X-ray is what is worrying her.I told her that the X-ray was taken from bed in the morning,when Preslee was in pain from no med's and had gotten sick,and had to cough but wouldn't because it hurt.She told me she did not know the X-ray was taken from bed and they are not as accurate.So I asked her can we take another one because she has been working hard and coughing,loosening a bunch of stuff.She said we only have 20 minutes for the day.Lets go now.We had the X-ray and it was much more clear and accurate.She said no one can improve that much in one day.Preslee worked hard doing everything she doesn't want to do,so I think it paid off,and the previous X-ray was done inaccurately and made her lungs look worse than they were.With this result the doctor said we can go home and continue the exercises and med's 

I just got a visit from the nutritionist about proper diet at home for anemia.She asked me if I knew which foods contain iron?I replied yes.She then asked if I had ever given Preslee a multi-vitamin?I said yes every day.She said that surprises me because she is anemic.I said she is anemic because she has just had heart surgery with no transfusions,and I am very capable of providing her with an iron rich diet at home.She told me I need to learn to look at labels,and where they are located on the boxes.Anyone who knows me knows that my whole family was on a gluten-casein free diet for 4 years,and what I know and have done with nutrition.I did not get sent to the hospital with a unnourished unhealthy child.

Then they send in a respiratory specialist to work with Preslee,using the same breathing machine we have been using in the room,then tell her to cough.Wow that's what we were doing without a specialist.He said I will be back in 4 hours to help her again.I have just had it,I want these people to go away and let me be mom again.We don't even see surgeons anymore just stupid nurses changing shifts every 4 hours that don't even read her chart.Her heart is doing fine its the after care now and I want to take my baby home.I hate it here!

The doctors have looked at Preslee's chest X-ray and echo.  The echo looked good, however, the X-ray shows cloudiness in the lower portion of the lungs.  This means that she needs to work hard on her breathing excersies and expand her lungs. to make sure its not fluid in her lungs,not good.  Since her heart seems to be fine, I think she would be so much more comfortable at home.  Other than the X-ray,her blood pressure,and pulse oxygenation,is stable,and heart is working well getting adjusted to the new conduit.She is still anemic,but that's expected.Doctors will keep here till it's safe.Today is ruff everyone's nerves are shot.I feel we could take this over at home soon. 

They are also changing her pain med's since her stomach obviously didn't like to one she had been on.

More to come...

Preslee had a very rough Thursday night.  She suddenly got sick to her stomach around midnight and threw up all of her midnight pain med's.  Her vomit had a little blood in it and that concerned everyone.  The doctors wanted to skip her 4am pain medications since she didn't have anything in her stomach and the pain med's would just make her sick again. 

She was in a great deal of pain having lost two rounds of the meds, but she just had her 8am meds and they seem to be kicking in and giving her some relief.  She is eating a little this morning and has been up walking around the floor.  Some pictures have been added to you can see her beautiful face.

She had a chest X-ray and an echocardiogram this morning and we are waiting for the results.

She just got sick again.  Well, I got to go.

She is hanging in there, further and further from the dangerous stuff, but feeling the reality of what she has just been through.  She did some more walking, coughing and visiting today and she is exhausted.  She is pretty aware everything, she said "I guess I didn't get any of the risks, right?"

The cardiologist was just here and again talked about the pulmonary artery branches having significant narrowing due to the conduit having been so small, the dammage has extended and somthing will need to be done to enlarge them more than the graphs that were done during surgery.  As soon as they do an echocardiogram tomorrow, the first since the conduit has been replaced, they will decide how soon they will need to intervene.  Most likely they will have to go in and put a stent in on both sides of the artery branches.  Doctor said this would not be for at least 6 weeks.

That's' it - bye for now and thank for all your prayers, I believe someone was listening!

The little trooper is moving along well, she just got up and took a walk around the courtyard, and  is doing more and more coughing with her pillow to her chest to get those lungs moving. She isn't getting any morphine anymore so it is painful and sore, not just the incision, but deep in her chest.  She is still so tender, with broken bones along with everything else, but she's doing what ever they tell her to anyway. The doctors are so happy with her will to push herself, she really wants to get better not just stay comfortable.  That's why the title of this entry is her I think I can,I think I can,I think I can,and so I will,yes I will!!!!!!!!!!!!!!!!!

After moving from ICU no one checks regularly on my daughter, I am very frustrated and probably tired too.We have been here 3 hours with one nurse to ask about what she needs and never came back with it, PAIN MEDICATION!  There is going to be one angry mother on them tonight, because someone needs to be taking care of this little girl.

Her insicion from surgery looks great,it is clean and no higher than the last scar.  It's not the priority but it's important, to do the work without making it any larger than necessary.

I want her to get well and get her out of here ,as she said this morning she is over it. Don't worry they won't let us!

I am so proud of how strong she is.  She is a  fighter!She is starting the healing now.

Preslee is sitting in the rocker in her room,a little uncomfortable but got up,with help and is off most lines now.They are talking about moving her to recovery and out of the ICU today maybe.They are going to help her walk later a little.The night went well no big problems.As for me,not much sleep,but what do you expect? I am amazingly fine right now though.She is going to feel much better with all this uncomfortable stuff out.

 The doctors made rounds this morning and discussed all together Preslee's progress.She is steady and stabilizing well enough to remove her catheter,her pace wires connected to her heart will be pulled out,along with her drainage tubes which are draining all the excess fluids from the heart area,they are painful to remove.She will also have the biggest IV in her neck pulled out today.She will begin drinking fluids and try some soft food later.

The surgeon's reported Preslee was on the heart and lung machine for 73 minutes,23 minutes with the heart stopped on fibrillation.They said there was allot of scare tissue to get thru all throughout the heart and arteries area,so after replacing the conduit they placed a piece of gortex material over it before closing her chest to help make it easier to get to the next time it needs to be replaced because of its texture ,no scare tissue will adhere to it.

Today 'she is over it',her words,her personality is coming back,she says some funny things,like all I want for Christmas is an icecube or anything that turns into water.

Its 11:30 PM and I am sitting right next to my miracle daughter,she wants to know what's going on,and she finally was given some ice chips for her aching ,dry throat.

She is still getting allot of attention,and is hooked up to so many cords and lines,and IV in both hands,and in her necks main artery,along with 2 drainage tubes,oxygen,and a blood oxygen monitor.Its allot to see and believe.

Her coloring is quite pale due to anemia and loss of blood,but the test results just came back testing her platelets,oxygen in the blood and red blood cells count. The..results were higher than after surgery,so her body is doing its job well and hard at work making more blood to replace what has been lost today .Over all she is doing well ,but has a long way to go,but she is trying hard to push it along.

Her surgeon mentioned that the conduit he replaced was not only way too small,but also badly deteriorated,both inside and out,so I guess it was in serious need of replacement,right now!The old conduit was size 18mm and the new one he replaced it with is a 22mm.This one she will most likely not outgrow,but chances are it will need to be replaced again from expected deterioration with time ,no avoiding that,but it should last along time ,and lets not worry about that now.

For now she is resting with a few special stuffed animal friends....Goodnight ,sweet dreams,Preslee

Its almost 8 o'clock,and Preslee is asleep for a bit after getting sick to her stomach from all the morpheme medicine.....wait she just got sick again,it hurts her chest so much just to cough or dry heave,but the cough is good for her lungs because it gets things moving which helps prevent infection.they are giving her something for the nausea now.They plan to get her moving around a little bit tonight,because tomorrow she has allot of lung and breathing exercises to do,and get her up out of the bed.I think she is doing well,lets just keep going that direction.she needs some rest, its been along day!!!!!!!I am staying here in her room tonight,my baby's heart surgery is over.

Its five pm now and she is recovering in the ICU,doing very well.They took out her breathing tube ,and her lungs are breathing on their own.She is in and out of sleep,and desperately wants water ,because of the breathing tube making her throat so dry,but they wont let her yet.She is talking and alert off and on.she looks so good to me,I cant believe it.She still has the drainage tubes on both sides of her chest,but has not yet needed a blood transfusion.she of courses in some pain but chooses to cough with a pillow to her chest anyway she is tough and brave,and makes me beyond proud and gratefull they say the next 24 hours are very important and anything can change but she is doing above average so far.Now I can breath!

We arrived at the hospital at 6:30 this morning.  Preslee was feeling calm and relaxed.  Nice, cheerful nurses.  They took her back at 7:45am and we kissed her goodbye.  She was heavily sedated very quickly after the anthesiologiest gave her Verset.  Doctor Underlieger came and spoke with us - reassuring us that she was in good hands and he would take care of her.  He told us it would be about 5 1/2 hours of surgery once he is in the O.R.  Then another 2 hours stabilizing her and until she reaches the Intensive Care Unit (ICU).  The doctor told us he felt good about replacing the conduit, but the most difficult and dangerous part was cutting through the scar tissue.  The conduit could have grown into the breast bone and lungs - getting the conduit out could cause a great deal of bleeding.  If it causes too much bleeding, they will need to put her on the heart and lung machine through an artery in her groin.  (She will surely be on the heart and lung machine, but this just dictates how they hookup the bypass)  This seems to be an extremely complicated surgery, but he assured us that he has been performing these surgeries for 20 years and he will keep her safe.   He also mentioned that he would be calling Dr. Starnes to give him an update.  Dr. Starnes was the surgeon for her first two heart surgeries in LA. The doctors are good friends and that is a comfort to us.

I didn't cry until I shook the surgeon's hand.  I felt like he was our angel - sent to fix our daughter's beautiful heart.  He was so calming.  

She is feeling pretty special about having a website of her own,we love her ,all of us,so much and I aprecieate everyone who she loves and loves her,and every one helps her in her recovery,she is very lucky to have all of you! tHANK YOU !

Today is August twentieth ,Preslee Avalon Clark will be going in on tuesday August twentysecond for her third open heart surgury,which will be her last surgury I hope for a long time.She is well prepared,and calm, and has much love and support from so many people who love and care for her and we are so gratfull for each and every thing that everyone has offered and made available for her .Tomorow is blood tests and tours, and meeting with the surgeon,preperation and a good night sleep.