Update

Its been almost 3 weeks since Ella's heart surgery! Its amazing how things have turned out. She has been gaining weight (getting chunky), she is very alert and learning new things everyday. She finally started to eat a little bit of rice cereal, but still not too sure about the solids. She has started playing with bigger toys and rolling around more. She even sits up pretty good with a little bit of assistance.
Next week we go in for a follow up echo scan to check on the device that was placed in her artery, it will be good to see how well its holding up.
Thank you for all your prayers during our hard times. I know for a fact all the love has helped Ella get healthy again.

Thank you for being born Jesus

Today for me has been a day of reflecting on Jesus and how grateful I am for everyone in my life. I challenge anyone who reads this to take 5 minutes out of your day and look around you. Reflect on what you have and who you have. I am very grateful for my parents, they brought me up and raised me into a wonderful mother. My kids are my life, I took my 5 minutes to look around today and I could see all the happiness in everyone around me. Sometimes we dont have time to reflect on things around us that should be reflected on. Thank you Jesus for being born and giving me the best parents in the world and a marriage that yes everyone at some point has had to work on things, But My husband is the bestest friend I have ever had. If we could we would be attached to each others hips every second for life. Thank you Jesus for giving me 3 of the most wonderful children. My 12 year old helps and supports me so much, I am very grateful for the spirit in her and the love she has for others.  My other two children are a miracle, at one point in my life I was told I most likely would not be able to have children. Matt and I have had two precious children together. Brayden may be a handful, but his cute personality over joys me. He gives the best hugs and kisses he loves all of us so much. Ella is a miracle, she has been through so much. She is a fighter and she will continue to fight anything that gets in her way. Most days I feel like crying because I want her to do what most children her age do. It takes one person to tell me to bounce back up and know that it will take time. But she will be okay that she has god watching over her. So with all that has been said I am thankful for the love that everyone shares one another and the kindness that everyone has to offer each other. Thank you to everyone that has come to us and given us prayers, love and support for our family and daughter Ella. Today is not about giving gifts or receiving them. Its about reflecting on Christ being born and reflecting on your blessings.

Thank you, Thank you, Thank you

Today is 4 days after surgery and 1 day before Ella turns 6 months. Ella has been doing really good since surgery, she has more energy than she has ever had. One thing that Ella is still not over coming is eating. She is still really low on her feeding. I talked to the cardiologist and she said that it may just take a week to get her back to normal. If she does not get her strength up and start eating better in a week, we will have to return to the doctor and have her checked. It may be that she has become so use to eating less that it has turned into more of a habit. Which we would have to figure out how to get her out of it. Lately she has become more and more excited about playing with toys. She doesnt have many, but with what she has she gets bored easily if she doesnt have something to keep her occupied. We are still having trouble with her eating solids, rice cereal. She wont have anything to do with it. But she is very interested in what we are eating, so we must be getting close.

Before I had Ella and before we started with the surgeries I didnt want to believe that there was good people or I should say a good community of people out there. When Ella had her brain surgery I felt all alone. As I sat in a waiting room by myself with no employees in it on a Saturday morning. I thought to myself what happened to all the good in people. I remember working at my last job and seeing all the help employees would offer for other employees that were going through something similar as I. But I was sitting their all alone and feeling like I was not as important as other moms.

Things have changed so much since I met my two best friends Jamie and Natalie. I started going to a church called SMCC (South Mountain Community Church). I could immediately feel a vibe in my heart of love and compassion . I have never been around a group of people that show that they care about each other.

One of my friends was/is going through a rough patch, and so I started thinking of ways I could help her family for Christmas. I decided to open up a group on facebook called Angel's of West Jordan. In this group I invited others to join around the area to help this family out and give this family a Christmas. I received such a big response I decided that I would ask my two friends to help me with the sight and help more families. We ended up being able to donate to 10 family's that are in need. We have had so many people sending in donations. The biggest of donators is from a paint ball team called Feel the paint. https://www.facebook.com/pages/Feel-the-Paint/108874952483623?ref=ts&fref=ts We have been working with a very sweet guy, I would rather not give his name out unless he feels its ok. This group has also supplied 4 baskets of items to show my 3 friends and I that they appreciate all we did for those family's. So I want to personally Thank him and everyone that donated to our Angel Families. I am so excited to find out how happy he children are on Christmas after they unwrap their gifts.

I also want to send a Thank you to the family that nominated my family to the Sub For Santa this year with Granite School District. I am unsure who nominated us, but I am very grateful for the generosity and love that has been shown to my family in such a hard difficult few months. We were unsure if we would have been able to have a Christmas this year, but with a little help from the community we are going to be fine. The one thing that feels my heart up and brings those joyful tears to my face is all the help we have received.

We also have a surprise visit tomorrow that Matt and I can not wait to see the children's faces. We have had someone donate their time and love to our family. I will not post about this until it happens, and I can have a picture of the event that takes place. But this person knows who he is and you and everyone has opened our hearts up and brought my family such  strength and love.

Thank you ALL for everything you have given us and all the love, prayers. From our family to yours we want to wish you all a Merry Christmas.

Please come back for an update tomorrow on a surprise visit to Ella. :)

Xray of Ella's PDA heart surgery

This picture was taken before the device was placed.... 

This picture was taken after the device was placed, you can see the difference and where the bleeding stopped leaking into the lungs. If you look close enough you can see what the actual device looks like

Thank you!

Its been great being home after such a hard surgery, but I have to say its been an emotional morning too. Last night was not a good night for Ella at all. Normally before surgery Ella would sleep all night without any feedings. Last night we were up 4 times feeding and trying to calm her down. She was in quite a big of pain. On top of the hard night, I decided I would try on her Christmas dress and it ended up being double the size of her. The emotional mom I am right now started crying. Anything that doesn't work out for Ella or anything hard we have to go through with her sends me into an emotional state of mind. I try to be the strong mom, but sometimes I really cant help it.

This is another emotional part of me that I am going to cry writing it. I want to Thank all our supporters and all the prayers from everyone. I never thought we would ever have to go through such a rough time. I always had the mind set that my children would be healthy and that I would never have to face what we have. The thing that really makes my heart strong is people around SLC and in other states (Jen Clark sending baby coupons, Judi Hummel and all my DWS/Hydro parents)  that have not even met my family that is helping us. I have never been the type that likes to ask for help, even if we are down in the dumps. When we came home from the hospital yesterday we came home to a box of diapers that my best friend Jamie dropped off earlier. A couple of families donated over a hundred diapers to Ella, baby lotion and wipes to us. I am unsure who these family's are. But I want to send a BIG shout out to these family's. Thank you very much for your generosity and compassion for my family. I know in my heart one day Ella will read about all the help we (her) was provided in such a difficult time and how much we are grateful for the support. We also would like to thank SMCC (South Mountain Community Church) for their donation. My Best Friend Jamie's group donated a little bit to Ella, to help with surgery. Our hearts are over joyed with how great friends and family can come together and help each other at such hard times. Thank you Jamie and SMCC for all the help and love you have given us also.
A thank you to Festival Of Trees, they came to Ella after surgery and gave her a cute teddy bear that was donated. A little girl named Shaylee designed and made the clothing on the bear. She also wrote a very cute note to Ella to get well. Thank you Shaylee and Festival Of Trees.
I also want to thank my parents. My mom has taken 2 family days off work for us in the last few months and we really appreciate all her love and help with the kids. I don't know what we would have done without your help.
To the doctors, Kauri Sue Hamilton School and everyone else that has done things for us. Thank you, Thank you, Thank you. We are now on a road to success, Ella will soon be able to get back on track and start fighting to get back to what normal children are doing her age. I have faith in Ella and her willingness to learn and get on track. We love you Ella, never give up and always keep moving. You are loved by many and supported by many. Keep up the great strength that you have. We all love you!

PDA Heart MurMur surgery and Hospital Stay

As hard as this is going to be to type, please bare with me. I may make some mistakes in spelling or forgetting something. But I will do my best.

Monday December 17, 2012 we arrived with my 5 month old beautiful girl at Primary Children's in Salt Lake City, Utah at 9:00am.

We did a lot of sitting around for the first little while, but was finally called back to check Ella's weight and taken to a room. In this room they checked her temp, length and even got to put on some baby hospital gown.  The nurse gave Ella some medication that was to keep her blood pressure up and her heart rate stable for surgery. From this room we were taken over to another larger room where we proceeded to wait another hour or so. Finally a anesthesiologist came in and talked to us about what he was going to do during the surgery. That Ella would be put to sleep by oxygen and medication through the IV. He than asked if the nurses told us about a mistake, that they had given Ella someone elses medication for surgery. Matt and I both looked at each other with a blank look " We both said "no what do you mean". The doctor said that there was another Ella in for surgery and that the nurses messed up and forgot to look at the name tags and gave our Ella her medication. As hard as it was to stay calm, we both just asked if it was going to harm Ella in anyway. The doctor said he is not worried and that she should be just fine. Matt and I were pretty upset, but at this point our concern was directed towards Ella.
Next the Dr. Martin, Ella's cardiologist came  and walked us down to the 1st floor to the Cath Lab. We could see where Ella was going to be operated on and we both gave her a big kiss and hug. A nurse proceeded to take Ella as we were taken out the white doors to another room to talk to the doctor.
She said she was going to do everything she could do so that we didnt end up having to have open heart surgery. We signed some consent forms, and was given a pager (just like one I had in high school) and was told the surgery would last 2 hours.
As hard as things were going, we decided that we would go eat some lunch. While eating lunch, I was trying my best to hold back the tears. Matt started to tease me, because thats how he gets his mind off things. Well this didnt help me it made me start crying in public where everyone was eating lunch. Yes, I felt like a little kid that was told she couldnt have a cookie if she didnt eat all her lunch. Than in the middle of it a choir started singing soft music out the door of the cafeteria. I finally stopped crying and than Matt says I bet that choir isnt helping you much are they? I couldnt even look at Matt, I just started crying again. Matt decided that it was finally time to stop picking on me that no matter what he did to make me smile, I was going to shed tears instead. Matt and I decided to head up to the 3rd floor where they can charge your cell phone batteries back up for you while you wait. So as i was sitting there I was able to meet another mother with a child that has needs. It really helped me out a lot to have another parent know what I have and am going through. Her daughter is 7 months and has been through so much. They are hoping they do not have to spend Christmas in the hospital. So I am keeping my prayers open for this family and that their daughter gets strong, able to get home to see what Santa brought her. I am very happy that I met this mother and plan on staying in contact with her through out both our daughters lives. Its amazing how when you are so down and hurting so bad, that someone comes along and knows exactly how you feel. Thank you so much Patty for allowing me to be your friend and be able to share experiences with you. My day felt a lot better being able to talk to you.
Well 2 hours had passed and this little pager went off. So we went back to the first floor to the Cath Lab and of course we were not able to see Ella. But we were able to go into a room with the doctor to find out the outcome of the surgery. Going back to Friday before surgery, Ella had an echo scan and that is where we decided to get the surgery done quicker. Now back to surgery day talking to the doctor, this will make sense in a minute. Doctor started to show us pictures of the surgery and what the arteries looked like before they were closed up and after the device closed it. It was amazing how much blood was taken into the correct place instead of it flowing into her lungs. The doctor was amazed that she was able to get the Cath in her and that she was able to get the artery closed without open heart surgery. Doctor said they would do a Xray later that night to make sure that the device stayed in place. Matt and i was directed to the waiting area on the 2nd floor to wait for Ella to go into the recovery room. We waited only about 15 minutes and our names were called. They would only let one parent go back with Ella, so I went back with her. She was asleep the whole time, except a few times that she got upset in her sleep. Back when Ella had her shunt Ella was nothing like this. She was alert and knew I was there. I was a little concerned as to why she was so out, but I figured maybe the medications worked on her a little different this time. Ella was finally stable to go to her room that we would spend the night in. Ella never woke up fully till about 4pm. She would open her eyes but would it almost seemed like she would hallucinate. She had me pretty scared, so I called the nurse. The nurse didnt seem to think that it was a problem, but that she was going to call the doctors to make sure that it was normal. Come to find out from the anesthesiologist (yet again meds gave to her wrong) He gave her 2 sets of morphine. Doing this could make it last 6 hours in her body and she could keep having hallucinations. As he was talking to me, he was telling me how she was looking around like crazy and than started screaming, kicking her legs throwing a fit. So he decided that he better give her a second dose of Morphine. I told him that I am pretty sure all she needed was her mom, that she was most likely looking for me. She doesnt like a lot of different people holding her and to be in a room full of strangers, I am pretty sure she was confused. So because this doctor didnt think before he gave my 5 month old another dose, he did it anyway. Ella ended up being out of it for pretty much the whole night.
Her oxygen levels would get really low 70;s and the only way they would bounce back up is if we used oxygen. The nurse decided about 11pm that she would take the oxygen away and just have her oxygen level go low. So even with me upset and voicing my opinion and that I would have liked to talk to a on call doctor. I got told no that I couldn't and to deal with it. I dealt with it as much as a mother could, Ella and I got to sleep around 12pm. At about 5:30am Ella woke up out of her sleep and started coughing/choking. I sat her up, put her arm in the air and patted her back. While the nurse sat there and starred instead of helping.  Thankfully Ella calmed down and went back to sleep. By morning her oxygen level was stabled, but she had a small cough. The doctor came to see us and wanted an X-Ray done before we left.. So we went down and had it done, by the time we came back up we were able to get discharged. Dr Martin said that Ella's heart condition was worse than what it showed on the Echo Scan on Friday. That she is very glad we didnt wait any longer to have this surgery done. Her artery was 2mm open, when it should have shut on its own after 24 hours of being born. Ella is now at home with our family, very sleepy and exhausted from everything she had to go through. But I call her my Angel Miracle. She has been through so much in such a short period. I am praying that we will be able to get back on track and start working with her on doing things. Dr Martin said she suspects that Ella will get back on track with after a while with children her age. It will be great to see Ella that eats normal, and doesnt get exhausted as fast. Hopefully she can make it through a full physical therapy appointment after this.

We finally got home and found that we had a box full of about 100 or so diapers for Ella, baby lotion, box of wipes and a $25.00 gift certificate to help us with food, gas and such for her surgery stay.
Thank you to the Angel's that have watched over our family and given us these gifts. They will help us more than you know!

Thank you all for the prayers, love and support again. I truly believe that all the prayers have helped and guided our miracle Angel to getting better. Now for the next few days, we will stay indoors away from the cold and keep recovering. Thank you all again! Love you all.

Hydrocephalus

Normally I would have information faster about things my daughter has been diagnosed with, but I during our last surgery we were not informed correctly about what my daughter has and why the shunt was put in. I really hope that we are more informed in the future.

Before Ella was born I joined a few groups for parents of Dandy Walker Children. I learned so much from other moms on the DWS site and what I may be up against when Ella was born. I have only came across one other family besides us in Utah that their son too has Dandy walker. Hopefully I give the correct information. But he has had 4 shunt surgeries. He was diagnosed with not only Dandy Walker but with Hydrocephalus. After Ella had her shunt put in, the mother asked me if they diagnosed Ella with Hydrocephalus because normally they would put a shunt in the front of the brain to drain fluid from this syndrome. We were only told during the surgery and whole stay that this was put in for the Dandy Walker.
So when we went in Thursday I asked a lot of questions, ones that I didnt even think to ask when she was in the hospital. My main question "Does Ella have Hydrocephalus?" The doctor looked at me funny thinking I should know this question. He proceeded to say that the reason why the shunt was placed was because of the Hydrocephalus. He said that the Hydrocephalus is caused from the Dandy Walker. I was thinking to myself "wouldn't that have been great to know before you placed the shunt?"
So, Ella has been diagnosed with Hydrocephalus which is enlargement of the ventricles in the brain.
I would like to share a link from the Hydrocephalus foundation. There is a link to donate to the research and cure of Hydrocephalus, while its Christmas and I know a lot of families are having hard times this year. We should all donate to this cause, and find a cure for many children out there including my daughter Ella. I wish we could find ways to find a cure for everyone that is suffering from an illness/syndrome, this is one of my biggest wishes!

Click the link to follow and learn more about one of Ella's 3 conditions.

                                 http://www.hydroassoc.org/

Procedure of PDA

Below is a link I found on What will happen in Ella's surgery. Her surgery is at 9am Monday morning at Primary Children's Hospital in Salt Lake City, Utah. She has the sweetest, most caring cardiologist preforming the surgery. Ella lights up when Dr. Martin walks in the door.


http://www.aboutkidshealth.ca/En/HealthAZ/TestsAndTreatments/Procedures/Pages/Patent-Ductus-Arteriosus-PDA-Closure-in-the-Heart-Catheterization-Lab.aspx

Taking the good news with the bad news

Yesterday we had an appointment with the Neurosurgeon for an after shunt surgery check. The doctor has diagnosed her with hydrocephalus which is enlargement of the ventricles in the brain. This is associated with Dandy Walker Syndrome. Doctor was very impressed with Ella and her learning and growth. We will re evaluate Ella in 6 months on her shunt.

Today we were given bad news, which we expected for the last month. But its harder when you hear the bad news in person. Ella will be going in Monday night to have surgery in the Cath Lab. The doctor will try to insert a catheter into her groin, if all goes well and the catheter fits than they have two choices to close the artery that did not close after she was born.

1- Insert a spiral type device
2- Insert a cork type device

Doctor will not know till she see's Ella''s artery to know which one she will need to use. But she is pretty positive that Ella's artery is too large to fit a spiral. So we will have to go with option 2. Option 2 has a tendency to cause more heart problems. If this happens than we will reschedule and have open heart surgery in January. Doctor will know right after she inserts the cork if its going to cause further heart problems.

IF the doctor can not insert a catheter because of Ella's weight, than we will also have to reschedule for heart surgery. 4 weeks ago the doctor put her on less water, more formula to gain weight. During these 4 weeks Ella only gained a pound. She is weighing in at 12lbs which is very small for her age.

If we end up scheduling heart surgery, the doctor is scheduled out a month. So it would be in January, we are doing this surgery as a semi emergency surgery because Ella is hardly eating and not getting the nutrition she needs, she is also not breathing normally.

I broke down when the doctor mentioned surgery, she assured me that this condition will not damage her heart or her brain. She said that we need to get this fixed so she can grow and be able to develop. This makes me feel a little better. But anyone that has a child that has had to watch them go through surgery or go through something complicated knows that this isnt easy on the parent or the child.

We all have had a really hard few weeks with Ella's symptoms increasing and knowing that we were going to have to face this appointment and schedule surgery. We knew when I was pregnant with her what we may face, but it has been a lot harder going through it than just knowing about what we may face.

Our support from everyone is beyond what I thought we would have. Everyday I think about everyone and how much love, support Ella has. The world is not all bad , UN trusting people after all.I wish I could wish us a Merry Christmas and a Happy New Year at the end of this post. But all I can offer is my love and gratitude for everyone that is there for our family.  Praying to Jesus to bless our family with support to strengthen our family and to make sure Ella's surgery goes well. Sending love and hugs to everyone.

Physical Therapy at 5 months

Today we had Physical Therapy, it was an emotional/learning day. A parent with a disabled child always has the thought on their mind of how far along is she delayed? I started to tear and she said that children learn at different paces, however Ella is about 2 months behind on her age. This was really hard for me to hear. On the plus side Ella was able to show Melinda how to roll on her back from her stomach, put her binkie in her mouth, and even hold her bottle. Ella has started to pass toys from hand to hand, but still has some work on that.

This time we will continue to work on everything we have and start to teach her how to sit up in her bouncer.

The Physical Therapist was here for a hour 1/2 and Ella was really good for about 45mins and than she fell asleep. This is caused by her PDA Heart MurMur that will be fixed later this month.

All in all Ella did a great job today, she proved that she can do things. I am so very proud of her and her accomplishments. Thank you Melinda, we appreciate all your time and hard work you do with Ella. You fill our hearts with so much joy.