Future Appointments

Well the holidays are almost over and than we will be back to going to doctor appointments.
This Monday we will do our 3rd ear testing with Ella at Kauri Sue. I am going to try and make sure I feed her before we go in and hope I can keep her asleep. They are thinking she is failing the tests because shes awake and a wiggle worm. So if I can get her to not move hopefully this will be the last test.
We also have an appointment for Brayden this week with Kauri Sue. The Physical Therapist thought it would be a good idea to have Brayden checked also just to make sure he is growing and doing things on time. So Wed someone is going to come to our house to evaluate him and than we will be going into Kauri Sue to have his health evaluated. Brayden has always been ahead of schedule so we are not too worried. But its good to have him looked at just to make sure.

December appointments. This is where is going to get hard.

Ella is scheduled for a CT scan and neurosurgeon appointment on December 13th. This day we will look at Ella's current shunt and make sure its draining as its suppose to. We will also be looking at the fluid behind her brain to see if the shunt is taking some of the pressure off with the shunt. If the shunt is not helping the fluid on the back of the brain, they will schedule a surgery date to go in and put a second shunt on the back of her head.

Next Ella will go back to the heart doctor on December 14th. We will be doing another ECHO and seeing how things have progressed over the last month. The goal has been to get some weight on her, Dr Martin said that the more weight we get on her the better, she wont have to do open heart surgery and she will only have to block the artery with a spiral wire. If she does not gain the weight than we may have to look into open heart surgery and using a cork type of device to close the artery. If we end up in this situation it MAY cause other heart issues. Right now we are going to keep our schedule open the week of Christmas. So depending on DR Martin hopefully surgery after Christmas but before January. The only reason why we would want to get it done around those days is because both my parents are off of work and can help me out. Matt has no vacation time or sick time at work. So getting any time off is pretty much a NO. So with the help of my parents and Matts we will get through it.

Hard times have slowed down for a moment, but I know its going to be getting hard again very soon. I am just glad that we have supported Family and Friends to get us through all of this. The one that needs the most support, love and prayers is my precious miracle girl. Its amazing how strong she is and how fast she gets over things. Ella may be going through a rough patch right now, but we will get through this and she will grow up knowing what she fought when she was a baby.

I had to take this from my friends page because I believe it.

“So we fix our eyes not on what is seen, but on what is unseen, for what is seen is temporary, but what is unseen is eternal.” 2 Corinthians 4:18

Thanksgiving

This year we went to my parents first and had dinner. My parents make such a wonderful Thanksgiving dinner, I loved everything. The best part was sitting down with My parents and each of us going over what we are thankful for during dinner. Being asked that question I have hundreds of things I am thankful for, I cant just say one thing. But currently my highest thankful for would have to be my children, they are my heart and soul. Ella has been doing really good. I am so glad to see her doing things she would normally be doing at this age. She does have a slight delay, but with the help of Melinda our Physical Therapist we will work on things. Last night Ella discovered her tongue, its cute to watch her. She also started to put her binkie in her mouth all by herself with no help. If I am laying with her and playing on my cell phone, sometimes she will take it out of my hands to play with it. I think she is actually trying to get attention from me, mom stop what you are doing and look at me.
Anyway, back to Thanksgiving. After eating dinner at my parents and visiting for a bit, we headed over to Matts Parents. We had a second dinner with them, everything tasted great their too. Aunt Terri and our cousins brought us a big kitchen garbage bag full of clothes for Ella. We are sure thankful for the help with clothes, kids grow out of clothes so fast its hard to keep up. Our friend Natalie has been helping us also with clothes for Ella. We are so thankful for the help. While we were at Matts Parents Brayden was playing with his cousins and Marian, he loves being the center of attention. While he was playing with the toys their he came across a small toy toilet that belonged i a doll house of Marians. He would flush it and play with it, does this mean he may be interested in potty training? Hmmm we shall find out soon. Brayden has carried it around with him since Thanksgiving. Hope its a sign of get me out of these diapers so I can use a big boy toilet. After Matts parents we were so sleepy and drained that we went home and hung out. About 9:30pm Marian and I decided we would go to Walmart and find a few birthday presents for him. Thinking we were going to be fighting a BIG crowd of people, cars lined up across the street from Walmart and parking lot full. We came across a parking spot really close to the doors. We went inside and yes there was a lot of people, but it was almost as if we were going there on a Saturday. It wasnt bad at all. The only difference I saw in going on Thanksgiving was that instead of standing in line for 30 minutes on a regular day and only two lines open. All lines where opened and we didnt have to wait for anyone. We were in and out of walmart faster than we ever have been. We will have to remember that for next year. Next was going home and sleeping till 6am. Ella decided that she was going to stay up all night being fussy and not wanting to sleep. So I pretty much stayed up all night with her, got up at 6am. Marian and I went to Fashion Corner in Draper with our BFF Jamie. We were going for Boots and a jacket for me. First 100 customers got a free $10 gift card. We got there at 7:30am store opened at 8am, no lines at all no one was even standing outside. So Jamie suggested going to beans and brews real quick to get coffee. Now keep in mind when we left there was no line we could have been first in line. As we headed back to the store we noticed a lot of people outside. The line had started while we were gone, awesome enough it wasnt a 100 people. So we stood in line and waited for about 15 minutes. The longest wait ever, boots flashing in the back of my sleepy eyelids. Finally the line started to move. All three of us got our gift cards and headed in. We all kept losing one another, but in the end we all got in line to pay together. Marian got a really cute purse free with the Gift card she got and some sunglasses. The jackets went way to fast so I ended up not getting one but I was able to get 2 boots, one pair free with my GC. Jamie was able to get boots, shirt and I was so tired that I dont remember what else haha. We all had a great time, I cant wait to go next year! This

Matt stayed home with the kiddos and reported that Ella didnt do so good. But Brayden was great.

Till Next year!!!

Ella sleeping after surgery

Toys

Ella started a new thing today, if i put a rattle, Binky or toy in front of her she will take it out of my hands and play with it.

Monday 5th discharge

We were so excited to be able to take Ella home. Ella had a pretty good day and again that night she started getting really sick. Every time she would have a bottle she would have the runs and even vomited all over her and I. She was very fussy and we couldnt calm her down again.
I called and talked to a neurosurgeon that was on call it was about 6:30am. I felt like I was talking to a wall. He was half way asleep and didnt make since on what he wanted me to do. So instead I hung up and called the pediatrician, the doctor said that I should get her back up to Primary Childrens and be looked at. This stay ended up being a 3 night stay with no progress. No diagnose, no answers nothing. I felt like we were sleeping at the hospital as they the bill tallied up! The doctors didnt know what to do but send us home. So we are home and continuing to get better.

I met a few people along my experience that placed a strong strength in my heart. Its amazing in bad times like this who comes in your life. I was taking a much needed break and started to walk the kids down to a play area on the 3rd floor. A lady happened to get in the elevator with us and she happen to look over at me while I was trying so hard to keep strong. She asked if I was okay, and suddenly the tears started rolling. I told her about Ella and how worried I was about her. She came out and asked if we could talk some more. Come to find out she was the Chaplin in the church. We went in a room with one other  Chaplin and we said a prayer for Ella. I have never felt the stress, worry and anxiety lift off my body as we talked and prayed for Ella. It was an amazing feeling.

I believe that people come in our lives at good and bad times. Those bad times strengthens us up to keep moving. That night i had so much courage, I look back at that day and know that everything will be ok as long as i keep myself strong.

I want to personally thank my husband for giving me breaks, my parents for visiting and bringing us dinner, To everyone that called about Ella and prayed for her. Also thank you STG for the pretty flowers you sent Ella, they are beautiful.

Please continue the prayers as we continue to see how Ellas health goes. Your love and support means the world to us!

Hospital and Shunt placement

This is going to be a hard blog update on me, Bare with me.

November 1st 2012 Ella started screaming from about 10:30pm and continued on for the next day. Matt got up and walked around the room with her, I took her downstairs in the recliner, held her tight, changed her diaper, nothing helped. We decided that we would wait during the day to see how things progressed. Later that day we were still dealing with the screaming and I decided to call an on call doctor to see if we should go to the hospital. The doctor said that it was up to me as the parent. If I felt inside that this was not normal for Ella than I better take her. So Ella and I left around 7pm on November 2nd and headed up to Primary Children's in Salt Lake City. We arrived in the Emergency room, which is always a headache because all you do is wait around. But we finally saw a doctor and they suggested we get a CT scan done on her to check her Dandy Walker. (Screaming a lot can sometimes mean an infant is having pressure in the brain and its causing a headache) Ella did a great job in the CT scan, she was looking all over trying to figure it out.
About a 30 minutes later a neurosurgeon came in and talked to me. I didnt have a good feeling about this talk. She started to tell me that between the CT scan done a few months ago and the one today, that fluid had doubled the size in her brain. Ok so this is where I couldnt stay strong. She said that she will need to admit her to the hospital and do an emergency shunt at 8am November 3rd. I was pretty upset and it seemed like anytime someone would try to talk to me I would start crying.
Going back to when she saw the neurosurgeon the first time I was told she wouldn't be needing a shunt that she should be great, that sometimes children are born with fluid but never show signs or never need a shunt placed. What happened between that visit and this emergency visit is unknown to me. About 2 hours later they finally took us up to a room we shared with another mom and her child. I had requested for a big bed, so Ella and I could cuddle together. My heart was so hurt all night, all I could do is look at Ella and see that she had no clue what was going on and that she was ok. The next morning approached. A nurse came in and said its time for surgery, I carried Ella in my arms, 2 floors down and to the door of surgery. The nurse said I will take her now, she will be okay we promise. I gave her the biggest hug and kiss, as I wiped the tears from my eyes. I had them take a blanket that her Grandma Cowan made for her into surgery to comfort her and know I was there waiting. The doctor had said that the surgery would last about a hour. It had seemed like forever, I was pacing all around the waiting room, crying, praying, thinking of her. What seemed to be like 2 hours ended up only being a 15 minute surgery. The doctor came in talked to me and said everything went well and that I could head back and see my girl in 20 minutes.  Again me pacing the floors with a tissue next to my eye as I waited. I went back and saw my Ella, She was in a little baby crib, her eyes were open, but so confused as to what was going on. I could see a bandage on top of her head, one behind her ear and one on her belly. We went back up to the room, this time I wasn't able to hold her. But I was able to stay by her side and let her know I was there. Ella had a hard rest of the day and night. They had her on morphine, lortab and Tylenol to help with the pain. The next day we woke up and I couldn't believe it. Ella was smiling, kicking all happy. It had been a few days since I saw her happy face.
That morning the doctor came in to talk to me and said that  he felt that she would need a second shunt placed in the back of the brain. That the first shunt would help the top of the brain, but he was unsure about the back. So we were scheduled for surgery Monday. Monday came and the doctor had a ct scan and xray done on Ella at 7am. At 8 am he came up and said that he thinks she may need one, but wanted to hold off to see if the first one would help drain some of the fluid n the back of the brain. So he decided that we could be discharged and make an appointment to see him next month.