Posted (jooosh) in All Posts on February-27-2011

Hey there Ella fans. It’s been awhile since I posted. Tina’s been doing the lion’s share of keeping you all updated, but I felt prompted to give an update.

Ella was in a real honeymoon period right before our last post. It felt like we had things dialed pretty good and overall she was doing well. I think it’s always my hope that, after a big surgery, that we’ll get a good long break between any issues. It’s also a pretty typical trend of Ella’s to not let this be. We’ve had some decent stretches over the last 3+ years that were relatively uneventful, but nothing that really gave us a chance to escape into what one would think as “normalcy”.

I share this to say that this stretch only lasted a week, and right after our previous post, Ella starting to show new signs of trouble. All day last Sunday (2/20) she was grunting throughout the day, almost like she was constipated. The weird thing is that she wasn’t. She was also showing signs of discomfort after feeds, which caused her to pass out. There were symptoms of what we thought was reflux as well. Ella would often start coughing after a feed, as if something was in the back of her throat. All these symptoms were a bit disconcerting.

This trend continued to intensify throughout the next day (Monday) which really started to cause concern. Ella passed out a total of 4 times on this day. I was feeling anxious enough to request that we head off to the ER to get some tests done, but Tina didn’t feel she was in a real emergent situation, plus we did have multiple checkup visits already scheduled that week. I trust Tina’s gut in these situations and know that she had a good feel for Ella’s state. We agreed to see how Ella behaved the next day. Tuesday came and unfortunately it was the same as Monday: grunting, coughing, and, once again, passing out 4 times.

The one thing that did give us some solace was that there were moments where Ella was behaving normally. She was consolable, but there was no denying that something was going on inside her and it was causing severe discomfort.

On Wednesday Ella had a followup appointment with a neurologist. She had an MRI of her brain when she was in the hospital in January. This was the appointment to discuss details around the results. I was at work that day but Tina emailed me a list of questions that she was going to ask the doctor. Just consuming the reality of the questions we were going to ask was overwhelming. To give you a taste, here’s the list we came up with:

  • How does Ella’s brain compare to a “normal” brain her age?
  • Is the global cerebral atrophy the same or different than the NICU scan?
  • When the atrophy shows that the brain is smaller than it is supposed to be, does it stay the same or can the rate of growth change? In other words, is she a certain percentage smaller, like 40% smaller and we can expect that to remain constant or can it change? Can it get better or worse?
  • Are there any environmental factors that impact global cerebral atrophy?
  • I know you cannot predict and Ella can always surprise us, but I’m trying to get a realistic perspective of what I can and cannot expect my daughter to accomplish as she gets older. What do other children look like with this diagnosis, as they age? What types of things are they able to do or not do? Can you share some examples of different outcomes you’ve seen.
  • The best plan of action: continue OT, PT and Speech Therapy and try to make the connections for simple tasks?
  • Do we IQ test at school age, like 6-7 years old?
  • Is this the type of diagnosis that goes along with Mental Retardation?
  • Do we ever need another MRI? or only if we see further neurological symptoms? What are symptoms that I should be aware of to indicate that further testing is needed?
  • What are the next steps for Ella (what is her health care plan neurologically)?

I highlighted the the item above because it’s the question that, in my opinion, stood out more than any other. We knew since being in the NICU with Ella that she sustained some brain damage. We also knew that it was pretty bad, but it’s never been clarified how bad. With this latest MRI though, we were hoping to get more insight.

The images below show the structural part of a normal brain and the part of Ella’s brain where her injuries occured, likely due to lack of oxygen. But the MRI does not tell you how the brain functions. The neurologist compared it to opening up the hood of a car and looking at the engine and its various parts. Doing that is not going to tell you how the car is going to run, but in can give you some insight. More importantly, they use developmental scales in various areas to test children and see how their brain is developing. Here are some other tidbits we learned:

(this is a normal MRI image, grabbed from Medscape.com as an example)

(this is Ella’s recent MRI, frontal view, reversed right to left)

  • You can see the part of her brain that died off due to a stroke in the upper left side of her brain (seen on the right here).
  • Ella’s brain is about 20-30% smaller than it should be for a child her age due to global cerebral atrophy. The white matter should be tight like cauliflower, pressed all the way to the edges of the skull. See all the extra fluid and how it is open and flowery? That is the global cerebral atrophy that makes her brain smaller.
  • Ella’s head circumference is on the growth chart; this means that her brain has grown as she has aged. The doctor thinks that it will continue to grow, based on the NICU MRI and the recent one. This means that unless we see neurological symptoms that are alarming, we do not need another MRI and her brain is expected to grow and maintain a 20-30% deficiency as she ages.
  • The corpus callosum is the main transverse tract of fibers that connects the two cerebral hemispheres. It is made of more than 200 million nerve fibers. The primary function of the corpus callosum is to integrate motor, sensory, and cognitive activity between the left and right hemispheres. Ella’s corpus callosum was the area most impacted by lack of oxygen. It has thickened since birth, but it is not the thickness that you normally see for a child her age, so she basically doesn’t have the amount of nerve fibers that would be ideal for learning and growing developmentally. This means she will be able to learn certain associations (like she has with walking), but learning simple tasks and associations takes lots of repetition, therapy, etc. and there is no guarantee which types of tasks she will be able to grasp.
  • Since the MRI only shows the structural part of the brain, the neurologist pulled out the Denver Scale (a test for screening cognitive and behavioral problems in preschool children). The scale reflects what percentage of a certain age group is able to perform a certain task. Tasks are grouped into four categories (social contact, fine motor skill, language, and gross motor skill) and include items such as smiles spontaneously (performed by 90% of three-month-olds), knocks two building blocks against each other (90% of 13-month-olds), speaks three words other than “mom” and “dad” (90% of 21-month-olds), or hops on one leg (90% of 5-year-olds). Ella scored between 12-15 months old in gross motor skills and 6-9 months old in the social contact, fine motor skill and language areas.

Tina received assurance from the neurologist that she expects Ella to continue to move forward and make progress, albeit slow, just like she has over the past few years. The doctor also noted that society no longer uses “mental retardation” for classification these days, but instead would use the term “developmentally delayed”. However, the neurologist also made a point to state that the professional community does not use this terminology any longer either because it gives the impression that Ella is simply delayed and that she will inevitably gain these skills, which she very well may not. So, the doctor labeled her as “intellectually and developmentally disabled”.

Knowing that Ella will continue to move forward, but not at a rate allowing her to catch up with other kids, Tina pressed the doc for a more specific answer even though it would probably be tough to swallow. After talking back and forth Tina pinned the doctor down by asking this question: “So when my daughter is 16 years old, will she probably only function at the level of, let’s say a 5 year old?” The doctor nodded and responded, “That is a reasonable assumption. Put it this way, Ella will not be 16 years old and functioning like a 14 year old”.

Ugggghghhh….the reality of this was like a punch in the gut. I knew this punch was coming, but I just didn’t know how bad the punch was going to hurt until now.

OK…so before you go off and start thinking about telling us how doctors don’t know exactly the outcome, and that she could surprise us, and that we never know where she’ll end up, and it’s in God’s hands, and it’ll be ok, and that she’s amazing…well, your right…all that is right…and we know this truth. BUT the reality of the moment is that we have an amazingly sweet precious little girl with a brain injury that will affect HER and US for the rest of our lives. We don’t know what the future holds, but the impact of this revelation provided by these details is deep.

Seeing Ella deal with her physical issues along with this news just really wrecked me. It’s been real heavy for Tina and I to process and I thank God that we can at least cling to each other through it.

On top of this, Ella continued to have her spells after the feeds so I ended up taking Thursday off work to help out. It can be so absolutely exhausting taking care of Ella, and I’m only doing it part time! I can’t believe the Superwoman Wife that I’m married to that does this full time and also maintains any sense of sanity!

Ella had a GI appointment scheduled for Friday morning but after consulting with the docs earlier that week, they requested that we see the surgery team as well. The GI docs were concerned about the possibility of issues related to the procedure in January which is what prompted them to have us consult with surgery. In addition, they had Ella take a chest xray prior to Friday, just to make sure her diaphragm was still intact.

While driving to work on Friday morning, I talked to Tina as she drove Ella to the hospital. Our conversation was thick with emotion around our daughter’s current situation. I was less than a mile from work when I was consumed by my wife’s mood and my own despair. My current state of mind convinced me to call off going to work that day and instead head to the hospital to be there with my family.

Upon arriving I hugged on my little girl while the GI doc talked through her symptoms and some possible ideas hoping figure out the cause of her issues. Her chest xray looked good – diaphragm still in place. There was no clear direction on what Ella was dealing with, and, as usual, she kinda stumped the doc on what path we should take. On top of that, we had already tried a variety of things to help Ella out and the majority of his solutions covered those same actions. Reviewing Ella’s condition with the surgeon also yielded the same results.

They did agree that Ella should come back in for an upper GI and small bowel series with contrast to determine if there are any obvious reasons for her issues. Tina will be taking Ella in tomorrow (Monday 2/28) for this test that will literally take all day.

Even through all this we decided to take a break on Saturday and escaped in the RV with some friends. We went up into the Evergreen area and had lunch at BeauJo’s. It was nice to get away and Ella did pretty good with minimal episodes.

As of today, it seems that Ella’s symptoms have subsided a bit (Thank God!), although she did pass out once this evening. We’ll see how the test goes on Monday. Hoping they don’t find anything that would require another surgery.

A couple items to share on the lighter side:

  • Ella walked over to the cat and pet her on the back for the first time. It was so awesome to see Ella do this on her own and with such intent.
  • While Tina was sitting on the couch, Ella decided to pull herself up onto Tina’s lap with minimal assistance. Once again…very cool.
  • Ella is now able to climb onto her bounce and spin zebra on her own!

It is the moments like these that are so incredibly cherished.

Heavenly Father: Thank you for your sovereignty and for being the creator of the universe! We know you have a plan for Ella Renae, and it is not to harm her, but your plans are to give us hope and a future. Lord, instill in us that hope so that we may trust in you daily. We praise you Lord for our sweet child. Bless her and heal her Lord. We pray that your Kingdom will be greatly impacted by her life. We pray these things in Jesus name…Amen

I’ll leave you all with something that God put on my heart a few weeks ago during my own personal spiritual wrestling: The verse isn’t “Be still and FEEL that I am God”, it is “Be still and KNOW that I am God”.

Rachel Pate on February 28th, 2011 at 5:34 am #

You know that Jesus is saying..“I am with you. I am for you. I am in you.” So simple, yet so profound. He is with me – “He will never leave nor forsake us” (Joshua 1:5). He is for me – “If God is for us, who can be against us?” (Romans 8:31). He is in me – “I have been crucified with Christ and I no longer live, but Christ lives in me” (Galatians 2:20). Praying for you in Atlanta,

The Brittain Family on February 28th, 2011 at 5:49 am #

🙁 Tx 4 sharing.

Dana on February 28th, 2011 at 6:54 am #

Of every post I have read over the last three years… This one is the most heart-wrenching. Sorry to hear this news. It has got to be heavy on the on the heart. Sweet Ella is loved by many — A true Miracle of life.

Pat Hadden on February 28th, 2011 at 8:43 am #

Well, this is who Ella is. For now. How she will change and grow is uncertain. But you do have the certainty of your love for her. And that is what she needs most.

Eve Johnson on February 28th, 2011 at 8:46 am #


Anne on February 28th, 2011 at 9:01 am #

You remain on our prayer list. Be still and know that I am God is my personal mantra as well. It brings me great solice during anxiety and difficult times. The two of you are incredible with such a team spirit. With God you can move mountains.

Liz on February 28th, 2011 at 9:11 am #

You all always amaze me on how strong and faithful you are. I have to say this was a hard post to read. We are always thinking of you and have you in our prayers.
It made me really happy to read about Ella walking up to the cat and petting it. My prayers are that one day I wil be reading about her running and chasing after Lucy and Lola

Lori on February 28th, 2011 at 10:07 am #

I have been praying for your sweet Ella for so long now. I am not sure how I came to “know” Ella but I am glad that I have had the chance. I will continue to pray.

Shannon on February 28th, 2011 at 10:07 am #

Love that precious angel. A true gift from God. You guys continue to amaze and inspire me. Give my sweet niece a smooch. xo

Julie on February 28th, 2011 at 10:13 am #

I have a friend who has a daughter (almost 5, I think) who was born without a corpus callosum. The outcomes for children with this condition (Agenesis of the Corpus Collosum or AGG) vary WIDELY, but I’m sure she’d be happy to talk/correspond with you about her experience if you think it might be helpful with Ella. (A couple things you’ve said rang a bell about her experience with her daughter.) Let me know, and I’ll connect you.

eva on February 28th, 2011 at 10:50 am #

I am a friend of Shannon’s and part of the growing prayer army of Christian soldiers lifting up Ella for healing and the two of your for continued strength, grace and faith in God and His miracles! This post moved me way beyond tears but also fills my heart with faith that God is writing our story and He alone knows how each chapter will turn out…all we need is FAITH!

Heidi Ham on February 28th, 2011 at 10:53 am #

Thoughts prayers and awe of your family…the light all of you are to every person who knows you…the inspiration you bring to each of us is a gift I cherish… bless you all!!!

Veronica Johnson on February 28th, 2011 at 11:58 am #

Oh my friends, Steve forwarded this post to me. I am sad with you. I feel my head trying to make sense of it all and trying to find hope that maybe it isn’t true… but it is, and it makes my heart sad. I haven’t looked at the blog in a while and was surprised by how much Ella has grown. She is absolutely beautiful. Much love (and energy and courage) to you! V

Tammy on February 28th, 2011 at 3:34 pm #

It has been a while since I have written a message to you, but have continued to follow Ella’s amazing progress! Ella has jumped so many hurdles, which doctors “predicted” she would not. I have worked in the field of medicine for 35 years and have seen so many wonderful things happen which knocked the doctors “predictions” right out of the ring! Hold tight to one another and let your amazing faith shine through.

Brad on March 3rd, 2011 at 8:28 pm #

josh, i’m blessed to know you and even more blessed that i’m able to have worked with you. your story and writings have always tugged on my heart-strings, especially having kids of my own. i will certainly send some kind words out to those that’ll listen.

Sherry Martinez on March 9th, 2011 at 3:13 pm #

I dont want to say anything stupid to you guys. I would just like to tell you josh that you are a real man for staying with your family and being there for them everyday. I like it that you as a man gets how hard it can be. Caydens dad walked out on us going on a little over a year now and i run a full time daycare as well as care for cayden and his older siblings. you stepping up to the plate is such a refreshing thing to see and yours and Tinas strength to be there for each other and to care for ella is a wonderful thing to know about. I have no insurance and no family or friends close by so reading your blog and writing to you always helps me get through my day, week, or month. I hope someday I will be blessed enough to meet you all if you would be willing to do so. Hugs to you all sherry and baby cayden martinez

Lesli Richards on March 27th, 2011 at 6:11 pm #

Thinking of you and praying for you, today, little West Family….Love you guys.

Devon on March 31st, 2011 at 12:52 pm #

Im so sorry about the news. God bless you all! =0( I was holding in the tears until I got to your prayer. thanks for sharing with us. She is looking so grown up and she is so pretty!!
Devon, mom of Camden cdh survivor

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