Posted (Tina) in All Posts on February-9-2008

Today was incredibly tough.

As of last night, we were trying different strategies for Ella’s feeds. Mostly, we have tried changing the volume and frequency of the feeds. After trying many remedies, we found some solace late today when we basically feed her very slow. We use the food pump and feed 35ccs over an hour, with a 30 minute break, throughout the entire day until her continuous feed at night from 11pm – 7pm. This means that she is hooked up to a food pump pretty much all day, but we are not sure what else to do.

This past weekend in the hospital, we tried Mylicon drops (simethicone) and that did not seem to help. So, we also tried Colic Calm, a homeopathic solution that is supposed to ease the pain. Neither of these seem to have much of an impact for Ella. Maybe this means that it is not gas?

We have started to think that it may not be so much a food preference either (dependent on the type of formula), but it is definitely something related to feeding her (volume, pressure in her tummy, gastrointestinal pain, etc.).

I know that many of you are mentioning breast milk. Trust me, it is not the first time we have considered it. But, we have a challenge based on Ella’s condition. The breast milk along with 5 days of formula is what caused Ella to go back to the hospital (fluid retention that resulted in respiratory distress).

Breast milk and the Similac Advance both have their fats in a long-chain triglyceride form. This causes more fluid to be excreted from Ella’s lymphatic system. If you remember, when Ella was in the midst of her chylothorax, using breast milk significantly increased her fluid issue over a 24 hour period. So although it is generally the best for a baby, it may not be the best for Ella based on her condition. The other issue, quite honestly, is financial. As many of you likely know, breast milk can often be as expensive as a mortgage payment. However, if we felt that breast milk would solve Ella’s problems, we would be more than motivated to figure out a way to make it work. But in these circumstances, it could actually make it worse for her simply based on the way her body digests it.

Here is an excerpt from an article that may explain it better (“Management of chylothorax in children” by Elizabeth C. Suddaby):

“The goal of nutrition therapy in chylothorax is to reduce the flow of chyle through the thoracic duct. Since it is mainly long chain fatty acids that are absorbed from the intestines via lacteals and enter the central circulation at the thoracic duct (Shils, Olson, & Shike, 1994), enteral intake of long chain fats must be severely limited. Thus, dietary management includes complete gut rest with parenteral nutrition, relatively fat-free enteral feeding, or very low long-chain triglyceride-high medium chain triglyceride (MCT) enteral feeding (Beghetti et al., 2000; Buttiker, Fanconi, & Burger, 1999). Medium chain fatty acids (6-12 carbons in length) are absorbed directly into the portal system and do not enter the lymphatic system (Shils et al., 1994).”

Also, the superior vena cava is an integral part of moving fluid from the lymphatic system. Considering that Ella’s SVC is collapsed, this increases the amount of fluid build up in her head. This is what we are seeing more these days related to fluid build-up. As Ella’s body grows more and more collateral veins, this should improve.

When Ella was diagnosed with chylothorax and SVC syndrome back in August, they placed her on Portagen. The fat blend is 87% medium-chain triglycerides and help those who do not efficiently digest or absorb conventional fat. Ella tolerated Portagen just fine, but it is not intended to be used as an infant formula and is not considered nutritionally complete.

Upon going to the hospital last week, they wanted to take a look at the food and the role it played in her fluid retention. So, their first choice was Pregestimil, since this one contains 55% medium-chain triglycerides. Unfortunately, Ella did not tolerate this food. Their next choice was Alimentum, which is a lactose-free hypoallergenic formula that is specifically created for fussy babies that exhibit colic symptoms. Also, 33% of the fats are in the form of medium-chain triglycerides. So, this is one of the reasons they are trying to see if this will work, even versus breast milk.

A slight difference in Ella’s fluid issue: she used to accumulate lots of fluid in her pleural cavity and it was very evident on a chest x-ray. Even last week when Ella had excess fluid, her chest x-ray looked great, but her blood labs showed that she was too “wet” and that is why her respiratory status was being impaired.

Since she has been in so much discomfort throughout the day, she had frequent meltdowns that made her sweaty, turn bluish and require a temporary increase in oxygen. When she is not feeding or is sleeping, her heart rate and saturations are fine on 500ml of oxygen (her baseline). So right now, it does not appear that she is having a fluid retention issue or respiratory issue. This is purely a feeding challenge. However, we have to be very careful about what we feed Ella, so as to not cause more of a fluid issue.

In between the episodes, the door bell rang and we received more flowers and a care package from some work friends today. That was so sweet of them to think of the three of us.

Along with increasing the feed time, the only other distraction we found for Ella was the television (check out the commercial in the picture – – wouldn’t you want to learn about 30 minutes of relief?). The TV would work temporarily and provided a brief break from the crying spells.

We have a follow-up appointment with Dr. Kays on Tuesday and the pediatrician on Wednesday. At this point, no one has been able to give us any direction since Ella is such a mystery. Please pray that Ella will overcome this feeding challenge and that God will bestow His wisdom to us.

Please pray for endurance and perseverance for myself and Josh. Ella is such a blessing and it hurts to see her in pain and feel that there is nothing we can do to help her. Also, that there is no one except the Lord himself that knows the mystery of Ella, since she was created by Him. Please help us petition for His knowledge and wisdom.

Luke 18:1
Then Jesus told his disciples a parable to show them that they should always pray and not give up.

Auntie Shannon on February 9th, 2008 at 7:46 pm #

You guys continue to amaze me with your endurance and faith. We will form our family cirlce of prayer tonight and ask the Lord to give you guidance on Ella’s feeding or simply just fix it himself! She is such an absolute joy and to have her upset has to be so painful. I will find those videos today and get them off in the mail on Monday – maybe she will like a little Baby Motzart. 😉

Hugs and Kisses (give Ella a big smooch from us).

Auntie Shannon

The Lizotte Family on February 9th, 2008 at 7:56 pm #

It hurts to see guys under such duress. I will pray for the doctor visit to produce new ideas for you. There must be something new you can try, she is thriving even if she is struggling. Each day you post is proof that your Ella kicks butt.

Georgia on February 9th, 2008 at 7:59 pm #

I will be keeping you guys in my prayers, though i dont personally know you i am the parent of a CDH survivor. Something has drawn me to your blog, i love following Ella’s story, what an amazing girl she is!
I feel for you right now, i was here w/ my daughter, even down to the type of food, she would only tolerate Alimentum. We actually ended up switchin her G-tube to a GJ tube (to her jejunum) totally bypassing her tummy since she was always in pain or having reflux. She was on a continious 24hr very low volume drip..Of course was a hastle, but worked for her! just thought i would share! I will be keeping your whole family in my prayers! I cant get enough of her pictures! love that smile!!

Chambers Family on February 9th, 2008 at 8:44 pm #

After I posted my comments yesterday — I was trying to figure out how to delete it. I knew that you guys had already thought of EVERYTHING! Sorry for my “fix it” post. I can’t imaginge how hard this is to not have some kind of answer to get your little one out of pain. I know we all wish that we had a magic wand to wave over Ella and make her feel better. I will read and re-read my posts from now on before hitting the submit button. Thanks for all the information is this post – it was amazing.


Joel Snyder on February 9th, 2008 at 10:25 pm #

Ella, Sorry to hear that your day didn’t go well. I am just getting ready to go to work. Taco and Manny are glad that Grandpa is home and said to say hello. I am praying for the answers on the feeding and fluid issues for you tonight. Josh and Tina take care and know that you are doing your best for Ella. I am saying a special prayer for you. Love,Grandpa!!!!!!!!!!!!!

Char and Jim Jordan on February 9th, 2008 at 10:43 pm #

This is really difficult. It reminds me of a baby with colic. They can do alot to make life unbearable. We are praying that the answer will come soon and things will get better. We love you. Aunt Char and Jim

Julie Dudley on February 10th, 2008 at 7:57 am #

I was introduced to Ella’s blog through the Miller’s blog and I have read Ella’s entire story thus far. I am the mom of a CDH survivor, Kylie. Ella is adorable and her story is so much like my daughter’s with ECMO, chylothorax, SVC syndrome, NISSEN/G-tube, etc. that I felt I had to let you know. When Kylie came home from the hospital after 5 1/2 months she was on oxygen and continuous feeds with 30 minutes off for the day as well. It was what we had to do to help with her digestion. Kylie’s chylothorax drained chyle (sp??) for over a month and at that time she was on TPN only. She was also on 30 cal. feeds for a long time. I will say it was a hard time but she is now four and doing extremely well. We had our time of going back to the hospital/ventilator as well into the PICU. They always said feeding would be a huge issue. Please email me if you would like to talk further. Ella is beautiful and you two have handled everything beautifully. I think of you guys often. Take care.
Julie Dudley, Kylie’s mom

Racheal Morris on February 10th, 2008 at 8:38 am #

This may sound crazy…but check out Askdrsears.com for info about goat’s milk and making a goat’s milk formula to be more nutritionally complete for an infant.
Goat’s milk even has small and medium chain fats.
I was on goat’s milk as a baby due to lactose intolerance and I just chalked it up to some crazy 70’S medicine but found some interesting info on this site. Could be crazy talk like I said ,but maybe it could work for Ella Bun.

Julie's friend Motormouth on February 10th, 2008 at 10:08 am #

Praying for you all. You might ask your doctors about soy-based formula — I don’t know the fat structure of it, but it helped my *very* gassy baby.

Laura Marold on February 10th, 2008 at 11:29 am #

Dear Josh and Tina, I am a parent and I can certainly relate to your feelings for your baby girl. How difficult this is for you! Please know that there are lots of people like me keeping you in their prayers every day and some days all day long.
Love, Laura M.

Tammy on February 10th, 2008 at 1:02 pm #

Sweet Ella, the beads of sweat on your little forhead make my tummy hurt!
Blessed baby…you are all amazing and I read about your days and know that I have not one thing to complain about.
I won’t provide any “pearls” as I’ve never been in this situation, even with a colicky baby. The only part of this I can understand after having a critically ill baby for more than a year, are the feelings of helplessness and desperately wanting a clear cut answer for relief of your childs pain. There is nothing harder!
I will pray for speedy relief for Ella, and comfort and peace for you and Tina.
If a commercial provides even a few minutes of relief get that one on replay!!!!!!!!


Nina on February 10th, 2008 at 1:46 pm #

Just want to send my blessings to your family.
I found your blog while doing a search for chylothorax–which was one of the numerous challenges my daughter faced in her first few years of life. She too was born with a diaphramatic hernia–among other things–it just wasn’t discovered until after birth.
She had to 3 different bouts with chyle– which was not only hard due to feeding issues, but also because the whole time she was in the NICU (nearly 4 months), I was pumping around the clock so that I could breastfeed once she was of the ventilators. The thought of my milk contributing to her problems was tough.
I have been in very similar shoes and just want you to know that there is light at the end of the tunnel.
We still face many medical issues, but for the most part, Jade is a happy, thriving 5 year-old.
You are doing a wonderful job–keep up all the good work. I know how hard it can be at times.

Many blessing


Jenny Morris on February 10th, 2008 at 5:50 pm #

This will sound strange, but I know it has been done before. Have you considered ‘skimming’ the breast milk? I recall reading about this on the lalecheleague.org website, or in one of my LLL Leader journals. A mom named Trish was pumping for a baby boy named Bobby who had a chylothorax, she basically pumped her milk and then centrifuged it to have the fat rise to the top, which was then removed. I believe she did this for several years. I seem to recall that the mom was an RN in this instance. Will put your family on my prayer list!

Kristyn on February 10th, 2008 at 6:59 pm #

I pray that you find some relief for Ella’s feeding issues. Please let me know if you would ever be interested in extra bags for her feeding pump–from the picture they look the same as what we used. I have a box with 30 unopened bags that we never used and would love to send them to you if you could use them. Many prayers to you!
Kristyn, Leah’s mom (R-CDH)

Kara on February 10th, 2008 at 7:29 pm #

Humphreys are amazing. They are all natural and helped with everything from teething to sleeplessness. They are basically chamomile. Anything is worth a try. Also, when Kailee was 6 months she was into Lamb Chop. It would have her transfixed for 20 minutes, which is a lot for you. She also liked Winnie the Pooh.

Jennifer S on February 11th, 2008 at 10:20 am #

Hmmm… if it were available would you consider private breast milk donation? Is there a way that this might be beneficial to your daughter if it were possible to get it? My Charlotte is exclusively breastfed at 6 months old now and I might be able to help if your and your doctors thought it was a good idea to try. I already pump a few times a day and could add more sessions if there was a chance it could help.

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