Nov
07
    
Posted (Tina) in All Posts on November-7-2010

We’re so sorry to all the loyal Ella fans that have been patiently waiting for an update. Wow, there is so much to catch up on. Where do I begin?

Health-Wise
Ella has been pretty stable.

I noticed in mid-to-late September that Ella was doing her pass out spells on me again. Slowly they started to occur more frequently, then once per day, then multiple times per day. Based on my past experience in working with her pulmonologist, it is typically fluid retention. So on Sept 23rd, we gave her a dose of Bumex. Within a few hours, she had some huge diapers which confirms that was likely the case.

We went to see the GI doctor the next day on Sept 24th. At that point, we were still having trouble with Ella using EleCare. So, he prescribed MCT Procal powder to try and ease Ella’s retching and discomfort with feeds. He wanted me to try all three formulas with the MCT Procal powder to see if it would help; he was suspecting that she might have dumping syndrome. On the other hand, I was skeptical with the dumping syndrome diagnosis, but I just knew that feeding seemed to be very rough these days. At this visit, she weighed 13 kilos (28.6 lbs). I did express frustration that no matter how I seemed to feed Ella (multiple bolus feeds, water diluted in the food or straight water flushes, food pump at night or not, etc, etc, etc), it just seemed like nothing I did was making much difference. He noted that if none of the formulas with MCT Procal were successful, he’d like to hospitalize her for more tests and worse case scenario, change out her G-tube for a GJ tube.

Two and a half weeks later, we went to get Ella’s SVC checked via ECHO and see the pulmonologist. Even during that routine day long visit to the hospital, Ella was retching several times throughout the day. On the lunch break, we left the building so I could get some real food and I fed her. I had to stop 3 times within 10 minutes while driving, just to clear her airway from her retching up food and secretions!

The ECHO showed that the SVC pressure was a bit higher between 5-6 versus 2-3 on the last ECHO in late June. Nothing too alarming – but not headed in the right direction. The more alarming finding was that she weighed in at 13.7 kilos (30.14 lbs). There is no way that she would gain that much weight in 2.5 weeks. Her pulmonologist agreed that it was likely fluid retention. I explained when I had given the Bumex and that she had come close to passing out again, but had not quite yet. I was going to wait until that happened. Sure enough as I write this post, she passed out twice just the other night on Nov 4th. So the next morning on Nov 5th, we had to dose her with Bumex again.

The pulmonologist was more concerned with the retching, especially because it was not dry retching. We were having secretions and formula come up. This presents a high risk for aspiration and gave him great concern. So he pushed for the GI plan related to feeds. I told him that we were trying EleCare with MCT Procal, then Peptamen Jr with MCT Procal, and Nutren Jr with MCT Procal. So far, the EleCare with MCT Procal was not working. He let me know that he would call the GI team and apply pressure that this was a problem that needed to be worked out sooner versus later.

At this point, I was pretty fried from the constant discomfort and retching after each feed. Most of you probably don’t know what that experience entails, but trust me, it is very tough and heartbreaking to see Ella so miserable. So I decided to get online and do research. There have to be other parents that are experiencing the same issues. After surfing for awhile, the first significant finding was a method to wean children off of tube feeds. This is something that many parents try all the time with our conventional therapy methods, but the reason this was different: it was an approach used in Europe that is very successful and different than our approaches here in the US; most children go from 100% tube feeds to 100% oral feeds within 2-3 weeks. Wow!

As far as Ella is concerned, she still has some medical causes for using tube feeds and we have not even been able to get tube feeds to work successfully, so she is not ready to be weaned off of tube feeds. BUT, I found tremendous hope in these findings for the European approach – when Ella is ready, we are going to try this approach. I agree with the philosophy much more than the approaches I’ve experienced via therapists so far. As a bonus, I not only found this on another blog – but a blog for another CDH girl that was struggling with tube feeds – so now I can connect with her mom when I decide to try it with Ella. On that note, I did reach out to this mom and one of her questions in her email to me was asking if I had tried a blenderized diet. What is a blenderized diet?

I started googling and came across tons of blogs with tube fed kids that use this and report less retching than commercial formulas. Basically, it is taking regular foods and mixing it in a high speed blender to nourish your child. Ella had never had real food for her nutrition and it sounded like lots of work each day, but if it would solve her discomfort and retching, it would be worth it. As a side note, I’m going to post information about blenderized diets as well as weaning of tube feeds in another section of the site for parents that want to read the detail and educate themselves on an approach that might help their kid. For the rest of you, I’ll spare you the details.

I found a few recipes and was prepared to contact her GI doctor and nutritionist to ask if they would let me try this option with Ella. Although Ella had never consumed real food for her nourishment, she had an allergy test this past summer and passed with flying colors. That is usually the biggest concern. When I called the nutritionist at the hospital, she confirmed that many parents used a blenderized diet and noted that the hospital already had a recipe that I could [email protected]#@?? Excuse me, why had they not offered this option in the past? Here they wanted me to try 3 formulas with MCT Procal and if that didn’t work, they were prepared to hospitalize her and do invasive tests and even mentioned switching to a GJ tube. If I thought about it too much, it really irritated me. So, I just accepted the standard recipe, tried it and knew that I would likely change some of the ingredients if Ella started to show any promise in this approach (example: recipe calls for vegetable oil, but olive oil or flax seed oil is more nutritious). So what happened?

The retching was significantly less, but not eliminated completely. When we saw her pediatrician on Oct 27th and gave him an update, I mentioned how the morning feeds seemed to be worse. He had a great idea: give Ella more soluble foods in the morning (banana, milk, oatmeal) and use the other ingredients later in the day. He thinks that her system is slower and doesn’t function as optimally as it should. Giving her proteins and other more challenging foods after no food overnight might be causing the challenge with the morning feed. Sure enough, he was right. His other two suggestions: use honey instead of karo syrup/agave nectar due to how the stomach breaks down those foods. Use the MCT Procal powder because it is a good way to add a high amount of fats and calories with just a tablespoon of powder.

-We’re not feeding with the food pump at night.
-Ella is being fed 6x per day; 1000ml of blenderized diet and 300ml of free water flushes.
-I make two different blenderized foods: breakfast and lunch/dinner meals.
-Real food caused constipation for Ella, so we add Miralax to the blended foods.
-We’re using milk, grain and fruits for breakfast.
-We’re using protein powder, baby food meats, baby food veggies, flax seed oil, honey.
-We’ve added apple cider vinegar since that is known to help GERD.
-We’re adding MCT Procal to help give a high amount of fats and calories to the food.

Even as I type this, we’re still tweaking things to try and come up with the optimal schedule/ingredients. But I have to say, this is the most pain-free eating experience that Ella has had so far. She has always detested feeds and would whine when she saw the syringe. Now, she is often times smiling and active after feeds. Praise God!

She has maintained at 13.7 kilos and is scheduled for a follow-up ECHO and pulmonology visit in the next few months. We’ll see what happens, especially if we have to keep using Bumex!

Developmentally
I feel like I almost have a different kid. She went from a baby to a little girl by the end of October.

First, she was starting to stand on her own, and continued to crawl around and climb the stairs at the beginning of October. She learned how to climb back down the stairs too. Then all of a sudden by the last week of October….drumroll please…..Ella started to take her own steps and walk! Currently, she still requires an object to pull to a stand, but then will let go, take a few steps and fall down! It happens so fast that we have not had a chance to catch it on video. But as she strolls toward the holidays and continues to get stronger each day, we’ll be sure to capture video and share with all of you.

It just seemed to happen like a light switch – much faster than we all expected. To give you an idea: her physical therapist saw her in mid-October, skipped one week of therapy and came back 2 weeks later. She had all these exercises printed out for me to work on with Ella. She came to see her and Ella took a few steps. Her therapist was flabbergasted and proud that all those exercises she printed out were no good, all at the same time! She was in shock and agreed that Ella has taken us all by surprise!

Also, Ella decided that she does not want her binky or frog. I thought that would be a long time habit, hard for her to break. Literally just one day, she decided that she wanted nothing to do with it. Leading up to it, I had taken the binky away during the day because she would constantly chew on them, breaking down the material into small chunks that would come off. As a choking hazard, I decided to only give her a binky when she went to sleep. After a few weeks of that trend, she just decided that she didn’t want the frog or binky at all.

Along with that change, Ella started waking up at nights with typical toddler behavior. She wanted to be held, rocked and put back to sleep. Yet half of the time when you would lay her back down, she would wake up and scream again. In the past, you could hand her the frog and binky to self-soothe. Not anymore. So after a week or so of this behavior and many sleepless nights, we decided to let her cry it out. I think that is hard for any parent, but especially hard when the pulse oximeter is beeping loudly along with the crying over the monitor. But we decided that if the pulse oximeter was going off too much, we would go into her room and turn up the oxygen, but that Ella needed to figure out a way to soothe herself. The first night, she cried and screamed for an hour straight. It has gotten easier, but is still a challenge. I think if she could walk and talk, she would ask me to sleep with her. This is why it seems to be a typical toddler thing.

Since Ella is not chewing the binky throughout the day, she decided that she wants to chew her hands. So the skin breakdown on her hands and face around her lips and cheeks is really bad. That behavior along with the dry, winter air is causing her poor hands and face to be so chapped and red. Ouch! We keep using Desonide and Burt’s Bees Wax (we are limited in our choice of products because of the oxygen and because Ella is likely eating whatever we put on her hands and face). We just keep applying and applying…

To get my attention, Ella has been grabbing for my face to turn it to look at her. The only problem: sometimes her hands catch my eyes or earrings. Or she thinks that the harder she uses her hand, the better the response. Well needless to say, it hurts a lot of the time. Yikes, this one is tough to get her to understand.

Not much happening on the verbal/communication front these days – most of the developmental strides are with starting to walk and the “big girl” moves like ditching the binky. Oh, and also just the wonderful, 3yr old tantrums that are fairly constant when she does not get her way. It seems to be on a regular basis each day, and the only thing that makes it probably a bit more challenging: Ella doesn’t know how to communicate. So sometimes it is hard to give her what she wants or to negotiate with her, when you don’t know what she wants and are unsure of what she understands. Hopefully that will improve as the years pass…for now, it just makes those 3 year old tantrums even more fun!

Other Family Updates
Yes, we are cuckoo. We added another member to our family of the canine variety. We decided that it would be good for Lola to have a sister to play with each day. We went to the Denver Dumb Friends League and rescued a very cute German Shorthair Pointer named Lucy. Since she already responded to her name and had such a cute name (Ella’s cousin is named Lucy), we decided to keep the name. So now we have Lola & Lucy. From the start, these two dogs bonded and are the best of friends. It is really cute and disgusting to watch them play, groom and sleep together. Lola is happy to have a buddy to keep her company all the time.

Grandma West and Richard came out for a visit over Halloween. Josh had earned some time off from work for all the late nights he’s been putting in, so that worked out well. We had a great time as a family going around to various landmarks in the Denver area and surrounding mountains. We ate at the Denver Chop House and visited Downtown Denver, the Denver Zoo, Evergreen, Blackhawk/Central City, Garden of the Gods. And of course, we used the RV to transport everyone comfortably. Grandma had a great time helping us get in the ghoul spirit and doing various crafts as well as dressing up Ella in her tutu and passing out candy to the trick-or-treaters. And of course, we had to play the Wii.





Finally, a highlight of October: we found someone to provide respite care! Respite care is basically babysitting for special-needs kids (one of our benefits from Medicaid). We’ve had Medicaid since September, but have not had anyone to provide respite care. In this case, respite care can be provided by anyone that we trust to take care of Ella (family member, friend, etc.). One of Ella’s therapists from the school district found out that we did not have anyone and offered to distribute our need to all the teachers and para educators in the school district. Sure enough, a young grad that takes care of moderate to severe needs kids at the local high school offered to babysit Ella. We’re so excited. Definitely a blessing to our family. We’re looking forward to date nights again — we haven’t had one since Aug 2009.

Another blessing this past month: another mom of a CDH kid emailed us after happening upon Ella’s blog. She thanked us for Ella’s story and simply shared that her daughter was born at Shands, her healthy was sketchy at times, she was developmentally delayed, but she has exceeded all of their expectations: she is now 15 and a freshman in high school. Getting that email was so cool. Sometimes when you are in the midst of the day to day trials, you forget the bigger picture. I know we’ve provided hope to parents that are just getting the diagnosis of CDH. But to hear from another mom of a 15 year old CDH survivor just provides hope for our journey and Ella’s future days.

Josh had this upcoming Monday off, so we decided to get in the RV and head to the mountains for a change of scenery, last minute. Although it was warmer in Denver and we probably should have stayed there to enjoy it while it lasted, we opted to go camping for the weekend. That is where we are writing this post. Looking out at the gorgeous mountain scenery and enjoying family time.

It was kind of funny – Josh started to feel a bit of altitude sickness when we first arrived due to lack of oxygen. Then he realized that he could create his own trip to the oxygen bar! Thanks to Ella for letting Dad use some of your oxygen. After about 30 minutes, the headache and nausea subsided.

Looking forward to this holiday season…we will try to update with any new developments sooner versus later!







Laura Blackwell on November 7th, 2010 at 10:16 pm #

This is a great update. So fun to see her changing and growing in the pics. I needed this reminder of how GOOD GOD IS right now. Thank you!

Daphne Close on November 7th, 2010 at 10:30 pm #

I cannot tell you how BLESSED I was by reading today’s blog. To God be the glory for your testimony of His faithfulness to your family.

Jim and Char Snyder-Jordan on November 7th, 2010 at 11:09 pm #

Thanks for letting us see her and pray for her continued success and your strength

julie kirk on November 8th, 2010 at 2:41 am #

speechless…love u ella

Lesli Richards on November 8th, 2010 at 3:16 am #

I’m so glad you posted! I was just about to call you and see what was going on! She looks so terrific…good for you for following your gut on the feeds. I remember being so frustrated with Luke, when I’d figure something out on my own, and then the doctor would say “Oh, a lot of people are successful with that!”….Couldn’t they just save you some time and give you ALL the options? Don’t worry about the stalled out speech…if they are working on big gross motor milestones, usually they focus on that. I promise you, there will come a day when she is jabbering away at you, and you will think, “We should have stopped speech a long time ago.” Take it from me! Have you tried using PECS (Picture Exchange Communication System) to find out what she wants, so she has some way of telling you without getting frustrated? We made little pictures of familiar things, laminated them, and put velcro on the back and put them on a little board. Luke would pull the one he wanted and show it to me (usually while screaming) I’d say the name, and try to get some attempt. Like for banana, eventually I’d get him to say “ba” (this was after working at it for months)……the main thing was that it cut down on the tantrums, because he had a way of communicating his needs. We also did the schedule for the day like that…made everything that would happen all day onto cards and he could see the schedule…that was huge, because he knew what to expect, so it made transitions easier. I know that some people don’t want to use them because they are afraid the kids will become dependent on the cards and not learn to talk, but I’ve never seen that happen with any of the kids I know. Anyway, if you want to try it, google PECS and you will find tons of pictures already made up.

Love Josh’s Halloween Costume…that’s awesome! I’m glad things are going well for you… we still pray for Ella every day! (and her terrific mom and dad!)

Laura Brown on November 8th, 2010 at 6:24 am #

Thank you so much for your post! I guess you know now why they say breast-milk is best, not just because of the human bonding factor, but because formula is awful. I am so happy that you can feed Ella with solid foods! I also concur that the speech will come. There are thousands of options available for you. PECS is one, iTouch and iPad have several options as well. I’m sure you will find something that is preferable to a slap in the face. =)

Marge (A Friend in Indiana) on November 8th, 2010 at 6:46 am #

Great to see Ella; she is such a beautiful little lady; definitely changed from the last we saw her. Good to hear all the news and developments; thanks for sharing all.
Have a Blessed and Happy Thanksgiving as we all add our own special thanks to God, for the treasure of Ella.

Lee Ann on November 8th, 2010 at 6:46 am #

Praise the Lord! Your post has made my Monday! 🙂 Thank you.

Loren Lizotte on November 8th, 2010 at 7:18 am #

It sounds like you are doing awesome work Tina. Ella looks amazing, I know you will please as she continues to make new strides in life. As for the tantrums… hey it just shows that she is a normal kid!

Ellie Brown on November 8th, 2010 at 7:53 am #

Ella looks so grown up these days. She has made it so far, it’s great to reflect on the journey she has already taken, and how far she has already come.

Anne on November 8th, 2010 at 8:17 am #

So incredible to see her standing at the window. She has made so much progress. Delighted to hear that date nights are back in the picture. Incredible parents need some couple time!

Jennifer Tenney on November 8th, 2010 at 8:32 am #

I am so happy to hear of all of Ella’s wonderful progress!!! I love seeing all the pictures-she looks so beautiful and happy!
Hugs,
Jennifer

Christe Mitchell on November 8th, 2010 at 10:27 am #

Wow, can’t believe how much Miss Ella has grown and taking steps…. That’s Awesome! Thanks for the update. Keeping you all in my thoughts and prayers. -Christe

Julie on November 8th, 2010 at 10:34 am #

So good to hear such good news!
Have you ever heard the song “Shine” from Signing Time (a children’s show that teaches basic signs, sometimes airs on PBS)? If you haven’t heard it, you can find it here: http://www.signingtime.com/resources/music-songs/, click on the link for Shine. It always reminds me of Ella. I think you could easily insert her name: Ella will do what Ella will do when Ella is ready to do it…

(The song also makes me cry for some reason just about every time I hear it.)

Denise on November 8th, 2010 at 10:46 am #

Ella is amazing! I am so blessed by your postings. Sending you hugs and prayers from San Jose. You are my hero. God bless!

Laura Marold on November 8th, 2010 at 12:06 pm #

Amazing pictures of Ella standing and soon walking. Just amazing! Love, Laura M.

Katy on November 8th, 2010 at 2:38 pm #

Wow, walking! I can’t wait to visit again and see this for myself. So glad that you are taking steps forward and seeing Ella improve. My love to all of you.

Leslie Braun on November 8th, 2010 at 5:57 pm #

I am so blessed by the good news for Ella! She is doing so good and I am so happy for your family! Reading your post has brightened my day! Blessings and love to you all!

Sherry Martinez on November 9th, 2010 at 12:06 am #

hello tina I hope you remember me baby caydens mom i wanted to share with you with the communication factor we too had that problem very much its frustrating to say the least. cayden has learned sign language just the basics like eat, more, drink, and please our teacher and pt shows us what they are and they have made a huge difference. also a picture book of her favorite things so she can point to the pictures to try and tell you what she wants. I cant tell you what a relief these tricks have brought to our household. I hope I help I try not to get in your way as Im sure things can be hard enough I just always hoped we could be friends. hugs to you all sherry and baby cayden

Linda on November 9th, 2010 at 3:30 pm #

So glad to hear all the changes with Ella. I was beginning to have really bad Ella withdrawals so I was thrilled when I saw an email from you. Continued blessings coming your way.

Roslyn Dahl on November 10th, 2010 at 10:24 am #

What an uplifting blog! I’m so glad you discovered the blenderized food option and that it is working for you. In case you need more resources on this topic go to:http://www.oley.org/tubetalks.html — scroll down to the section on “formula homemade/commercial”

Also on this page is information on weaning from g-tube feeding. It’s at the very bottom, so you’ll have to scroll down even further.

I hope this is helpful!

Check out the rest of the site as well. The Oley Foundation offers free information and peer support to families like yours with a member on home tube or IV feeding.

Our web site is posted at http://www.oley.org. For a good overview, click on the “New to Oley” button.

Feel free to call/email me if you have any questions or would like to meet another family in a similar situation.

Warm regards,
Roslyn Dahl
Oley Foundation Staff Member
[email protected]
(800) 776-OLEY

Jessica M. on November 10th, 2010 at 2:32 pm #

Tina, Thank you for your caring and understanding when you stumbled across my blog yesterday. I think you have been through enough that you can give any wisdom or words that you know without me being able to say you don’t understand. I can’t even express how much someone understanding that sometimes I just need to vent the emotions that life with Madison and everything else brings. I do love my family very, very much. I love my God even more, I just don’t understand the suffering right now. I don’t know if I ever will. But thank you again for your words of understanding and support!

Jess

Jennifer on November 11th, 2010 at 5:53 pm #

What a FABULOUS update! So excited to hear about all the advances!!!

Audrey was on a Blenderized diet. I started becasue of retching and it ended up being a turn-around for her developmentally AND the means for her eating orally as well. We used MCT oil instead of powder and if it wasn’t so expensive, I think I’d still be putting on her regular food for the calorie boost! Another major ingredient was coconut milk (canned) but I honestly can not for the life of me remember what it’s benefit was! I can look back through paperwork if you’re interested.

Anyway, just SOO SO SO pleased to hear such great news! Keep it up Ella and you go mom and dad, super parents!!

Liz Nelson on November 11th, 2010 at 10:50 pm #

what a great update! Ella looks beutiful and I can’t believe how much she has grown. WTG Ella on your first steps and climbing the stairs. She is an amazing little girl. So happy that you are able to feed Ella solids from the blender. Shane actually takes Apple Cider vinegar and it works wonders.
love the new doggie. Lola and Lucy look so happy!

devon roell on November 17th, 2010 at 11:52 am #

nice reading an update on litte Ella. What a doll! We have been doing blenderized diet with Camden for a while now…but not helping the retching. I do know that is WAY more healthier though, so we will stay with it. Totally understand the watching your child retch continuous. Awful =0( Our problem is all tests show he is ok, so we do not have any idea.
Thanks again for the update, love to hear how she is!!! God is so good..

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