Zoo 08/25/12

This weekend was Matts work party with STG, they had the event at the Zoo. We had all three kids with us, it was a lot of fun. Brayden was unsure of what he thought about the animals. But he had a lot of fun looking at them, I think he would have had more fun if he could have pet them. Ella did pretty good, she didnt want to lay down in the stroller. So we let her sit up in the stroller, she had a lot of fun looking around. She did good till the end of the day and started crying and wanting to go home. She cried most of the drive home. We also had a few friends over to celebrate Matt's birthday. Ella did great, she slept most of the time, but stayed awake for some looking at friends. Brayden enjoyed the night with his girlfriend Lexi. They stayed up together and played till almost 1am. They didnt stop at all, they just kept on playing. We thought they would fall asleep a lot earlier than that. Marian was also able to spend the weekend with us, she had her best friend Lizzy over. They had a lot of fun dressing up and playing games. It was nice to see all my children having a great time with friends.
Ella started talking a little over the weekend also, she is now 9 weeks. Ella also started to take my hand and hold it up to her chest with her hands. She holds my hand so tight that I cant let go. Ella is also recognizing mirrors and toys. I put a mirror on her car seat and she looks at herself in it and smiles.

We had a great weekend, next week is Ella's neurosurgeon appointment. We are looking forward to some answers on the fluid in Ella's brain. We will update as we get answers. Thank you all that follow the progress of Ella. She is doing so great and I pray she continues to stay on target!

2 Month Wellness Visit

Today was Ella's 2 month Wellness visit. Ella is now 8lbs 13oz 21 inches long, her head measures 15.6 inches in the 69% centile. A month ago her stats was 8lbs 2 oz , her head was 15.3 inches in the 68% centile. The doctor said she is very strong, shes holding her head up and she is very alert, shes right on schedule as far as milestones. Ella got 3 shots today and so far shes doing great, she is to the age now that she can have 1ml of tylenol.

More to come.....

Another weekend

We had a pretty good day yesterday. Ella did great all day, we even went to our cousin Tiffany Earls wedding at the La Callie. Ella was asleep most of the time, but awake a little of it. She was able to meet family that she hasn't met yet. Than it all went down hill as we got in the car and headed home. Ella cried the whole way home. She hates the car and hates her car seat so much. But as we got home Matt got her out of her car seat and all the sudden she was great and back to sleep.

Tonight Sunday we are going to celebrate Ella's Dads birthday which is on August 21st and my fathers birthday which is the 27th of August. Let the fun begin!

What is Dandy Walker Malformation?

Dandy-Walker malformation (DWM) is a brain malformation that occurs during embryonic development of the cerebellum and 4th ventricle. The cerebellum is the area of the brain that helps coordinate movement, and is also involved with cognition and behavior. The 4th ventricle is a space around the cerebellum that channels fluid from inside to around the outside of the brain. DWM is characterized by underdevelopment (small size and abnormal position) of the middle part of the cerebellum known as the cerebellar vermis, cystic enlargement of the 4th ventricle and enlargement of the base of the skull (posterior fossa). DWM is sometimes (20-80%) associated with hydrocephalus, in which blockage of the normal flow of spinal fluid leads to excessive amounts of fluid accumulating in and around the brain. This leads to abnormally high pressure within the skull and swelling of the head, and can lead to neurological impairment.


Home page: http://www.dandy-walker.org

Delivery

It seems like it was yesterday that Matt and I walked down the long hall, to the surgery room to deliver Ella. I looked in a mirror watching Ella be born. It has been 2 months since she was brought into this world to us lucky and grateful parents. Ella has been a joy to all of us and we are so happy and grateful for her. We love you our sweet daughter!

8 weeks and update

Ella is turning 2 months.... I can not believe how fast time passes. It feels like we went to the hospital and I was waiting to get a C Section. My kids are growing too fast. Its weird to think I am STILL recovering from the C Section and shes getting bigger. We are so proud of her accomplishments and pray that she continues to give us good signs.

As of right now.... Ella is very alert, shes staying away more during the day. She looks directly in to our eyes and smiles at us. I will talk to her and say Hello, are you going to smile for me pretty? She lights up and gives me the biggest smile with the cutest dimples. I decided that since she is so alert to put a hanging toy in her car seat for her to look at. The toy makes music and it helps so much with her being fussy in the car. I also attached a mirror to the car seat. She enjoys looking at it, a few days ago i even noticed her smiling at herself in the mirror. Ella has been trying really hard to roll over on her back. She accomplished the rolling over on her side a week ago. She is also starting to find her voice. I have been trying to get it on video, but by the time I get the video ready she has decided to stop. Ella has also started to suck on her hand. When I dont get her binkie to her fast enough, she puts her hand in a fist and puts it in her mouth. I have also noticed that she uses her arm to suck on too. Ella has started to hear a lot more. I notice that when shes asleep she has become a light sleeper. If she hears Brayden talk or scream or if Baxter our dog barks it wakes her up. She has even woke up to the voice of Matt talking. So we are working at lowering our voices and trying to make it a quite environment for her.
Update on her health. I received a call directly from Ellas Doctor. I am amazed at how sweet and caring her regular doctor is. He always makes the call, he never has a nurse or someone else make his calls. I have never had a doctor care so that much. He upped Ellas Zantac to see if maybe she just needed an increase of her medication to make her feel better. He also suggested to start doing things for colic in case she is also suffering from that. He suggested that during the day to try and keep things quite, curtins shut, and tv on low. He is wondering if shes getting too stimulated in the day and its making it hard for her to calm down in the evening. So we are going to try the higher strength of Zantac and try to do things in the day to make it not so loud for her. We go to the doctor on the 23rd to get a wellness visit and will review it than.
On Sept 4th we have our appointment with the neurosurgeon to get a second opinion on Ella. We feel that we didnt get enough information from the previous neurosurgeon. Hes one of those doctors that uses DR terms and doesnt explain it in people terms. So we didnt get very far with him. I am hoping this doctor can explain things better to us and make us understand Ellas condition.

I am going to keep this blog updated hopefully on a daily basis. I am hoping that as Ella grows that going back on the blog can help us in her future, and also to raise awareness of her disability.
Thank you for all of you that read, I appreciate all the support we receive from Family and Friends.
My parents in all have been very supportive as far as watching the children and helping when they can. I really appreciate them and their love for there grandchildren. Marian, Brayden and Ella enjoy their grandparents and their love to them. I know in my heart that my children will grow up like me knowing how much their grandparents loved them and how much they cared about them. Makes me miss my grandparents, I had so much fun with them. I miss those days of having sleepovers at their house and waking up to my grandpa making his fantastic Eggs and the smell of coffee. My grandma feeding their yellow bird and just the love they had for me. I miss you Grandma and Grandpa! I am happy I have the memories and I am able to share them with my kids as they grow up.

Hard days

I havent wrote for a few days due to things have been pretty challenging. In the last few days I have hardly had time to sit and ponder by myself. Brayden has been in EVERYTHING, it seems like when I say not to do something, he is in something else he shouldnt be. Ella has had to be held a lot lately, and her reflex has become worse between 5pm and 9pm every night. She screams the whole time and arches her back. I feel bad for the pain shes in, I emailed the doctor this morning to see what we do next. I am hoping an increase of Zantac or a different medication to make her feel better. On a good note we finally got a double stroller, I am very grateful to the family that gave it to us. I now have away to get to all the doctor appointments for Ella and I, without worrying how I am going to carry them both. We planned on having our children this close, but never realized how hard it was going to be with them so close in age. Its a lot like having twins. They both have to be held at the same time, a child in each arm. I would never change it for the world though. They are so precious and they are such a joy. They both have brought so much happiness in my life. It has been a joy having a step daughter also. She has been a major help with the kids. I am thankful for her also.

Fun Weekend

Good news so far!

I have been measuring Ella's head on my own to see if there is any growth. So far since her appointment on my end I haven't seen any growth, which makes me feel grateful. I have made a new appointment with a better neurosurgeon Dr Marion Walker for Sept 9th. We will learn more on this appointment about her. Shes doing so well so alert, smiling and she even put her whole hand in her mouth and was sucking it today, thinking it was her binkie. Yesterday she tried to roll over while my mom was holding her. Shes so smart and right on track. I love you princess!

7 weeks

Ella has turned 7 weeks, it really is amazing how fast time goes by. In a week she will be 2 months old, it seems like yesterday that I had her. Ella did very well yesterday, but today has been a harder day. We (Ella,Marian and Grandma) decided to go to Gardner Village this afternoon to look at some jewelry from our friends Carolynn and her husband. They own there own company and design there own jewelery. While we were there we looked around at other shops and also saw a small farm of animals. Ella did very well while we went and looked around.
Later in the afternoon we decided that we would take the kids on the tracks and head for downtown. It was Ella and Braydens first time on tracks. Brayden looked confused like he didn't know what was going on. Ella was asleep most of the time. We ended up at gateway while Marian and Brayden went and played in the fountain. Ella was smiling at me and making great eye contact. She is such a sweetheart, we decided we would get back on tracks and head to the city creek. While we were on our way Ella started crying, screaming and we couldn't get her to calm down. With 45 minutes worth of crying we finally got to the car and she had calmed down. We started to think about it and we had forgotten to give her Zantac for her acid reflex. As soon as we got home we gave her medication to her and she calmed right down. It really scares me when she has symptoms because I have no clue what to look for with DWS, I told Matt at the time if we couldnt get her calmed down we may have to take her to the hospital. I am so glad that she finally was able to get calmed down.
Last night at about 8pm I received an email from Dr. Marion Walker hes one of the best neurosurgeons at Primary Children's. He said that he would accept Ella as one of his patients to call and make an appointment with him. So we are going to call on Monday and get her an appointment with him to have her seen.

Acid Reflx

Today is a new day... Ella has continued to have Acid Reflex symptoms, adding hours of crying and arching of her back. I talked to her doctor and he suggested going to the store, buying an liquid form anti acid and give her 2ML of this. So we did and ever since Ella hasn't cried, shes been sleeping most of it. So I will be giving the doctor a call and having him send in a prescription of Anti Acid to get her started. Its nice to not see her crying and hurting all day finally after 6 days. This is a picture of Ella with her medicine all over her face, Grandma and Mommy made it messy.

On another note Ella looked up at me today, I smiled at her and in return I received the biggest smile from her. Shes got these cute dimples on each of her cheeks... LOVE HER!

Pediatrician visit

Today we decided that we would make an appointment to have Ella looked at for Vomiting and spitting up. Vomiting is associated with DWS, along with a lot of other symptoms. We were unable to get in with the neurosurgeon, so we made an appointment with Ella's pediatrician. The doctor diagnosed her with Acid Reflex, he said that he would rather not start her on any medication at this point. But if she started to develop more problems arching her back and screaming more in pain. That he would start her on an anti acid medication.
The doctor said that if it was the DWS that she would be vomiting non stop due to the pressure in the brain. Ella's head is still measuring big and we will watch that. If it gets too big the neurosurgeon will have to put in a shunt to drain the fluid. The doctor said she is looking really good as far as smiling and being alert (good sign)

We are so proud of her accomplishments so far and pray things keep going this smooth. Love you Ella!

Not feeling well today

Today has been a hard day for Ella. One of the signs of DWS is irritability, vomiting. Ella has thrown up 3 times since last night and has been extremely fussy. I called and left a message for the neurosurgeon. He said that those are signs of the DWS but that his way backed up and wouldn't be able to see her till the 23rd. I was thinking to myself, that is WAY to far away, I can not put Ella through that or let it go that long. There suggestion...... Take her to the ER. I decided being the parent and all to wait and see if she has anymore symptoms and if she throws up one more time I will call her regular doctor. I have decided I will call her pediatrician tomorrow and see if he can give me a referral to get a second opinion at the Riverton hospital, since it is closer to our house. I have a hard time with having a doctor that just says take her to the ER, instead of taking care of her himself. Hoping to find a good second opinion.

Symptoms

This weekend I have been noticing little things in Ella that the doctor said to contact him if Ella had any of the DWS symptoms. DWS means Dandy Walker Syndrome for those of you that dont know. I will be using the this for short. Friday night around 1AM I started listening to the way Ella was breathing. She would take two deep breaths, than stop breathing for a few seconds and then keep repeating the same breathing pattern. I got scared and thought it would be best to wake her up. I picked her up, put her on my shoulder, changed her diaper and kept trying for about a half hour. Ella didnt wiggle or move for about a half hour. Finally she had some movement and woke up.

Today I fed her a bottle and about 10 minutes later she threw up the whole bottle. Not knowing if this is concerning with her syndrome. I emailed Dr Brockmeyer to see if or what we should look for or if I need to bring her in to be evaluated. So far I have not received a reply, but being Sunday it might take till tomorrow Monday to get a response.

On a good note, When we have tummy time with Ella she now raises her head up. So far we are headed to make one of the many milestones!

Pictures of Ella

Today I have decided to share some pictures of Ella. Lately we have been doing some tummy time with Ella, she has been doing so well about trying to lift her head all by herself. So far so good, keep up the hard work Ella. We love you so much and know you are so strong, I have dreamed of Brayden and you my whole life. I always knew I would have children, since I was little. You both are my world and beyond.

First Neurosurgeon Appointment 08/03/2012

We had an appointment at 3:30pm yesterday with Dr Brockmeyer, Neurosurgeon at Primary Children's in Salt Lake City. We had an CT scan done on Ella, and than we went back to talk to Dr Brockmeyer about the results.

Dr Brockmeyer said that Ella does have fluid on the back of her brain. He diagnosed her with Dandy Walker Malformation. He said as of right not her head is just a little bigger than normal, that we will not need a shunt right now. He said we will measure again in 1 month and go from there. The doctor said that right now we wait to see how she develops. She could be normal, somewhere in the middle or in a wheelchair. We don't know right now, the best way for us to know is if she reaches her milestones. As I was driving home from this appointment I started to think of other questions that needed to be answered. I found the doctors email address and this is what I asked and what was answered by the doctor.

1. Is it possible that Ella could pass away from DWM?

Extremely unlikely 

 

2. What types of symptoms should I call into your office about that is concerning?

Pressure symptoms, including irritability, vomiting and significant sleepiness.

 

3. If Ella ends up needing a shunt will this decrease the size of her head or will she have to live with her head being bigger than normal?

 

A shunt would reduce head circumference.  We will try and avoid putting one in unless she absolutely needs it.

 

Our next appointment with Dr Brockmeyer is in September. I will be updating this blog as appointments or other important things come up. 

The BIG day!

At 22 weeks we had an ultrasound scheduled to find out what gender our baby was going to be. Matt thought for sure it was going to be a boy, as I was saying it was going to be a good. The news came "ITS A GIRL". We were so happy and excited. The ultrasound tech said I will go get the doctor to go over things. As we waited we were talking about how excited we were to get a girl and that we were going to name her Ella. The doctor came in the room, looked at the ultrasound pictures. He had this look on his face like something was wrong. I was starting to get pretty nervous, wondering what was going on. He asked if we had been told anything about our baby having fluid on the back of her brain on previous ultrasounds. I replied no, we were told our baby was healthy and right on schedule.The doctor explained to us that our baby had quite a bit of fluid on the back of her head, that it was considered to be Dandy Walker Syndrome. The doctor looked at us and asked if we wanted to terminate. I looked at the doctor and said I dont think so, we will deal with whatever comes our way. Matt and I decided to go home and immediately start looking up dandy walker syndrome. Which we later found out was the wrong thing to do because the internet gives the highest possible symptoms. Every ultrasound we would get every 5weeks we would hear the same thing. We may have to deliver her up at the University of Utah and have her transported to Primary Children's in Salt Lake City. She may have to be rushed into brain surgery, when she is delivered. I had a lot of sleepless nights, a lot of days where I would cry off and on. Wondering what things will be like when she is born. How we will cope with our baby having dandy walker.
My doctor Bryant Brown had decided it was time to schedule a C Section. Due to Ella having Dandy Walker and with my amniotic fluid being at 27% when it should only be at 24%. The day came on June 22, 2012 Ella Pauline Dignan was born via C section. It was unknown what we had up against us, when Ella came out Matt had gone over to her to make sure everything was okay. As the doctors were sewing me up, I kept thinking to myself what is going on. Why am I not being able to see my child. Ella was taken to NICU, Matt was told that he needed to be with Ella. I was not told anything about Ella. I had no clue what was going on. As I was there being sewed and stapled up, I kept wondering why she was being taken to NICU. I keep the thought in my head thinking her dandy walker must have ended up being really bad. Finally I was taken to my room, still with no answers as to where and what was going on with my baby. Finally I was told that Ella had to get a CPAP that her lungs had quite a bit of fluid in them from the C section and she would have to be in NICU for a few days. I was told that I couldn't go down and see Ella in NICU until my body wasn't numb anymore. Finally after 8 hours of not seeing my baby, I was taken down by a wheel chair to see my sweet baby. I talked to a pediatric doctor and she said as far as she could tell Ella was not having any neurological signs of dandy walker. She gave me a neurological surgeon number and told me to call them and set up a date to have Ella evaluated. Ella was finally released from NICU after the 3rd day, we both stayed in the hospital till the 4th day, than was released to go home.