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.