July 28, 2011 - more...

So here we are a little more then 4 weeks since her surgery. For the most part she is doing great. We have been having troubles with her sleeping and pooping. They put her on more probiotics and little improvement. She went back to the dr yesterday and she sent us to havenher stool tested and they put her on antibiotics. I will he glad when wenget her stomach straightened out. She is very uncomfortable, however she is smiling a lot more then she ever has before. We are still fighting the sleeping battle and have been trying to keep herup during the day so she will sleep at night but that hasn't worked so well. I hope that by tomorrow night we see improvement in her sleep patterns. Kenny and I have started taking turns getting up with her so we both can get some sleep...but mostly we are walking around like we got hit by a bus...thank you Jesus I have not been working.

We went to the cardiologist today and he thinks she looks great. Because of all of the stomach issues he decided to keep her on the heart meds. He said her numbers look great though. The only thing is she has a mitrovalve that has opened. I guess when you are born everyone's is open and shortly after birth it closes, Ellies closed and then reopened after surgery. They are unsure if it will close again on it's own so they are going to keep an eye on it and if it hasn't closed in a year they will close it when they take pictures of her hart using a cathider in a surgery like procedure. She will have to be anesthetized and a cathider will be inserted in her leg and will go up to her heart to take pictures then if that mitrovalve is still open they can close it using the cathider. My heart sank when he told me this but he says they take these pictures one year after every surgery and the mitrovalve opening is common...however...she will go home that day. I will still pray it closes on it's own and we don't have that issue. God is good all the time.

July 22, 2011 - Sleepless in Shelbyville

Dear sleep...I miss you...I haven't seen you in several days. Every time I begin to visit you Ellie calls on me and I have to stay. I pray I see you soon, my little Ellie is having some tummy troubles that is keeping her from visiting you for long as well. As soon as we get her back on track we will both come for a visit. Sincerely, Sleepless in Shelbyville

The probiotics have made her stools more like baby poop but she is still pooping numerous times throughout the day.  She is up all night and never sleeps more then 2 hours at a time.  The Dr says she should be sleeping about 14 hours a day; 2 naps and 1 longer time during the night.  This is far from what she is doing.  She sleeps for about an hour and is awake for 2 hours.  During the night she may sleep for 2 hours and then is up for 2 hours.  Each time she wakes she fills her diaper.  I think I am going to buy some of those baby gas drops and try giving them to her and see how it goes.  Thank you JESUS this is happening while I am not working.  I could not imagine having to deal with no sleep for 3 days and teach my class.  However, she coughs now and no pain, and she can tolerate being on her stomach for a few seconds before she complains.  God is soo good.

July 19, 2011 - probiotics

So I took Ellie to the doctor today and she thinks that Ellie's digestive track is aggravated by the antibiotics she was on and that is why she is having all of this diarrhea. So she put her on probiotics. If Ellie is not doing better by Thursday we are going to take her to Kosairs outpatient to have some tests done in her number 2....lol. Hopefully the probiotics work I want Ellie to feel better. She has been through enough. She is being VERY cranky, and needy...I am not sure if that is Ellie Mae diva or if that is Ellie isn't feeling well.

July 18, 2011. - Still having diarrhea

Ellie is doing great...I Am amazed that we are already 3 weeks out from surgery and I have my smiley baby back. I know adults who wouldn't have been as strongthroughputt such a massive surgery. We went to the cardiologist last week and he said that Ellie is doing so well that if she continues to do so well she could be off of all her medications before the end of the month. WOW!!!!! God is good. They weighed her while we were there and she was only 10 pounds and 12 ounces...she is still a little bitty...lol

However, little Ellie has been off of her antibiotics since Friday and she is still having diarrhea on a regular basis and she ran a really low grade fever yesterday. I am taking her to the dr tomorrow...I am sure it is nothing but it is better to be safe then sorry.

Oh BTW Ellie is laughing now. It is the cutest thing ever...I LOVE smiley babies!!!

July 11, 2011 - What a great day!!

It has been soo nice to have Ellie home and the stress of surgery behind us.  Even though she is recoperating from major surgery you really can't tell by looking at her.  She looks just as happy as she did before surgery.  The only way I can notice is when we move her certain ways or when she coughs.  It really hurts her to cough.  I wish there was some magic pill I could give her that would take the immediate pain away from movement and coughing.  Tylenol seems to keep the bulk of her pain away but she gets a dose of loratab at night before she goes to bed so she doesn't move the wrong way and jolt her self awake in pain like she did the first few nights.

Life is getting back to normal.  Yesterady we went to chirch and then out to dinner.  Then we went for a walk in the evening.  FYI - for those who do not know...ELLIE loves to go for walks.  At the hospital she wanted to be in the wagon because it was kind of like talking a walk in her stroller at home.

Today she went to the pool and got her feet wet and then went for a walk in her stroller this evening.  Our neighbors are amazed at how well she is doing and can not believe she had open heart surgery just 2 short weeks ago.  Praise the Lord everything went smoothly and she is healthy and we are able to continue on with our lives.  I pray the families who are still at Kosairs or who just got there continue to do well.  I pray a blessing on them and encourage them to draw near to you for strength.  Through you all things are possible, Ellie is my proof.  Thank you lord for all you have done for the Ashton family...

Twp days before surgery we have family portraits taken...here are some...

July 9, 2011 - First full day home

Thank you to everyone for your thoughts and prayers throughout this entire process.  This was one of the hardest things we have ever had to go through.  I never wish anyone to have to watch their child go through something this horrendous.  Knowing that you were all here praying and thinking about us made it just a little bit easier.  I am having trouble with posting comments on your comments and sending e-mail to you.  I appreciate everything.  You can not imagine how much you mean to us!!

Ellie is doing great and is loving being home.  Last night she got a bath and we scrubbed the sticky tape and glue off of her.  She got lotioned up (except for where the incision is) and rocked to sleep just like she used to before the hospital.  You can tell she is glad to be home.  She is still a little sore and complains a little when she is moved no matter how careful we are, however, you can tell she is doing a whole lot better and glad to be home.

My posts on here will begin to get fewer as we begin to relax and enjoy life a little more now that this surgery we have been anticipating for the last year is over.  We have been so consumed by the surgery we missed the little things.  I will still post updates from time to time and would love to keep in contact with you all.  If you would like to stay updated and do not have facebook (because I am on there all the time) please send me your e-mail address and I will be glad to talk with you.  Here is my e-mail: address
faith.ashton@jefferson.kyschools.us

Nurse Kristina I would love to stay in touch with you and have no way to message you.  Thank you for showing such compassion for my little angel.  I know you see a million children every day and yet you still treated Ellie like she was special.

July 8,, 2011. Finally home

The dr came in this morning and we finally got to go home. I am actually blogging from my couch. Ni will blog more later...I am tired right now. Thank you everyone for your prayers and thoughts for our family through one of the hardest things I ever had to go through...the rest of my life is all down hill.

July 7, 2011 - this and that

12:44am. Ellie had been running a low grade fever all afternoon and had been really fussy. I was holding off on the pain medications because the doctors said by this point she should be on Tylenol or Motrin to relieve the pain and she is still taking loratab. However, I am told that children with down syndrome have a lower tolerance for pain and need more pain medications to relieve the same amount of pain that a typically developing child might need. So anyway, I had the nurse give her tylenol and took her for a walk in the wagon. I was beginning to think that we would have to stay another day because she was still cranky and still running a low grade 101.1 fever. While we were on our walk we ran into the doctor who said as long as the fever doesn't get any high and as long as her blood work came back good we would be going home tomorrow. That made me feel a whole lot better. That is until I remembered I still had a really cranky baby. I had the nurse change her dressing on her central line and give her some Mylacon drops and yet she still would not sleep. By the way the morning nurse was either a horrible nurse or really busy, I still haven't decided which one I will claim to. So when the evening nurse came in she suggested we try loratab and with great success my cranky baby was a little more easy going. Then she noticed the dressing the morning nurse had put on was already falling off and pullng out the central line. We had to get a chest x-ray to make sure the line was still in place. If it wasn't it would have to be taken out and she would miss her doses of antibiotic the dr wanted her to have or they would put the antibiotic in the IV in her head which the dr didn't want to do. Or another possibility was more infection die to the exposure of the central line. So we had to jump through those hoops. Only to find out (PTL) the line was in place and no damage that we could see at the moment had beedone except for some inconvenience issues. All the while that was going on I waas washing he dirty bottles and discovered that one of the breast milk bottles had someone else's name on them. Meaning I had fed Ellie someone else's breast milk. How in the heck that happened I do not know however now to make sure Ellie wasn't exposed to anything the other mother has to have bloodwork done and background check to make sure Ellie is ok. Just one more thing for me to worry about. So now here I am, thanking god th central line was in place, praying the other mother was healthy, praying the doctors say Ellie can go home tomorrow, praying that when we go home there are no complications and last but not least praying I get more them 2 solid hours of sleep tonight. I will blog when I know more tomorrow. Night everyon!

July 7, 2011 we almost went home

Last night Ellie decided she should run a random fever of 102. Then we gave her Tylenol and it went away and didn't reappear. So when the doctors came in this morning they said that they were going to send us home today but because of the infection in her incision and the fever spike last night they do not want to send us home until she has been on the antibiotic through her IV until at least tomorrow as long as she doesn't run a fever. They do not consider it a fever until it is 101.5. She has been hanging out at 100 for the last hour or so. She also hasn't had any loratab since yesterday and no tylenol since 9:00 pm last night. I am dreaming of dreaming...in my bed.

July 6, 2011 - getting settled into the new room

The doctors came in this morning and said they think her incision is definitely infected. It started oozing puss this morning and they have ran a culture on it to see what kind of infection it is. They are going to remove the stitches from the spot where the drain tube was and press on the incision to see if they can press out the puss instead of slicing it open to drain it instead. They said other then that they tink she is doing great. They said if she keeps up on this path she will be out of here in a couple of days. Yeah, I do not think her or I can take much more of staying here and being woke up every hour for something stupid that could wait till the morning. She looks soo good today. I gave her a bath and got her dressed in real clothes. We even took a walk around the hospital with little Mae riding in a wagon. Thank god for her. Praise the Lord she made it through this horrible surgery with little damage.

July 5, 2011 - eviction from the ICU

Yeah, we are finally on the floor. I almost thought we wouldn't make it. Ellie continues to run a fever on and off and have diareah. They kept the central IV line in her neck and the IV line in her head. She is still on the really strong antibiotic but they can not find the source of the infection. There are several possibilities but no defineates. I know we will be here on the main floor for at least 2 days if not longer. They are concerned that there is an infection in the incision but it is on the fence so they want to watch it because if there is it could be a staff infection. Like I was telling the dr. if a staff infection and pneumonia was all that happened to us...we have no problems. Considering the alternative (death, permanent pace maker, stroke, brain damage...ect)not to mention all the countless things that I have seen other children come into the ICU with....we got off pretty easy if you ask me....Thank you Jesus for my MANY blessings. Ellie continues to play and eat but has yet to smile or coo at me. It will probally break me down into tears when and if she does. Thank you all for being a blessing to me...god bless

July 4, 2011 - happy 4th of July

They want to keep Ellie in ICU another night. Maybe we should put in for a change of addrerss..lol (just kidding. If Ellie is going to be sick I would rather her be sick here at the hospital with all the monitors and medicine then at home with me in a panic because I do not know what to do for her. They said they just want to keep and eye on her. She had loose stools and was throwing up last night and one of her counts is high. They would like to take the central line out of her neck today because they said that might be the source of the trouble the only problem is if they take it out they have no place to put an IV back in besides her head. During surgery they tried all of the obvious veins and failed and the surgeon swore there was the best vein people working on her. Anyway, they said they want her to stay another night so they can watch her but if the ICU becomes crowded then Ellie could be bumped to the main floor. However, Ellie played last night with toys and her balloon. I told Kenny to stop at the store on his way in this morning to get her some new balloons to look at. Hopefully we will make it to the main floor before August...lol

July 3, 2011 silent night

Ellie is finally getting some sleep. I am not sure if she has just given into complete tiredness or we finally have the right combination of pain Medes and stomach relief. She has gone for a long period of time without pain meds tonight. She is eating, and pooping, and even playing some. Yes I said playing, that is definitely a sign that she is feeling better. At this moment in time we are definitely looking at going to the main floor tomorrow and one step closer to going home. Tomorrow will be 7 days. The nursing staff and drs at kosairs are outstanding, but I am ready not to be here. I am soo grateful for my path. You always find someone whose path is worse then yours. When the day is over we are sitting pretty high. Ellie will go home with me, she will live a long and happy life. She may have some bumps along the way but I see the future now and she is in it. Thank you Jesus for the many miracles you hae given me.

July 3, 2011 pneumonia

We will be in ICU another night. The suspect pneumonia. We are waiting on test results. If it is pneumonia they said to plan on being here at the hospital for at least another week. What next. She was doing soo well. I will try to remember to count my blessing. Ellie surgery was a success and she is overall doing well. This is just a bump in the road.


Update 6:20pm. Ellie is doing soo much better. She is eating and sleeping and finally went to the bathroom. Her fever is down and they are finally getting some of that gunk ut of her throat/lungs/nose. They said pneumonia is a common risk factor during major surgeries. God is good all the time...he put this song of praise in this heart of mine. GOD IS GOOD ALL THE TIME

July 2, 2011 - ICU again

Well we didn't get to go to the floor. Little Miss Ellie decided to run a fever and be really fussy right after we were ordered to transfer to the main floor. They did some tests and discovered that the top part of her left lung is filled with fluid. They have put her back on oxygen, antibiotics, and put back in her rectal thermometer, and out her backon IV fluids because she decided she wasn't going to eat today. So they decided to keep us in ICU again. She is finally sleeping after an all day fight to get her to do so. She has been uncomfortable all day...poor little girl. I can't wait to see my smiling angel again. I asked if they thought we would be in the main floor tomorrow and they are not sure.

July 2, 2011 6:30 am

Ellie is doing soo well and she is soooo beautiful. I love staring at her. Our room is right across from the nurses station and most of them come in from time to time to see what they are calling "The cutest baby in the unit". At the moment we are still in ICU but I really think we will be moving to a regular room today sometime. She is doing so good. She is off of all the medicine drips. She is taking lasix 3 times a day and morphine every 2 hours as needed for pain. She has been going 4 hours between morphine doses so I think they may be stepping that down this morning as well. PTL for all of his mercies on her. I have really come to be grateful for my blessings. There have been lots of times I have "felt sorry" for myself. Being at the hospital I have realized how blessed we are. Our angel will go home with us and live a very normal life. Since we have been at the hospital there has been a family whose baby has died, and a family whose baby is a preemie and only 12 days old on life support and has gone through heart surgery as well as countless other procedures. Not to mention many other health cases. Also, I have met a family whose 16 year old son was hit by one of those mud race cars at the fair grounds while sitting in the stands. Their family has been up here at the hospital in ICU for over 2 weeks and the end is nowhere in sight and the out come is unknown. I pray for all the families up here. This is the real world...everyday is a blessing, every step is a blessing, every breath is a blessing, and every word spoken could be your last. Thank you lord for my many blessings. God bless the men and women who put their emotions to the side each day as they love and care for these beautiful children.

July 1, 2011 3 days after surgery

Ellie is still doing great. We are staying another night in the ICU. Ellie is having a hard time with pain. They try to take her off the pain drip and she starts getting rally fussy. They have her on morphine now and she finally seems to be having pain relief. They said this is common with children with down syndrome because they for some reason require more sedation when they are needing to be sedated and more pain medications to control pain. They want to watch her one more day. She looks BEAUTIFUL!!!!! I am soo amazed. The dr told me that she is doing better then most children who go through the exact same things. God is good...all the time...he put this song of praise in this heart of mine...god is good....ALL the time!!!