I’m going on a walk down memory lane for this post… harking back to when Henry ate exclusively expressed breastmilk (EBM), prior to his first birthday. We were committed that even though Henry couldn’t breastfeed, I would continue pumping for as long as possible. Our goal was exclusive breastmilk until age 1, or his nutritional requirements necessitated a change.
I had no idea at the time what a challenge this would be when using a feeding pump. When we first brought Henry home from the hospital after he received his ng-tube at about 2 months of age, we had an older version rented Kangaroo model pump for several weeks until our funding provider provided our current pump. The Kangaroo model seemed less sophisticated than our current Infinity pump, but upon reflection this was actually a bonus. It would pump any liquid, at a predetermined rate, regardless of thickness. The dose, rate & volume measurements were likely not that accurate, but at the time I didn’t know it.
About a month later, when we received our Infinity blue feeding pump, provided by our funding source. I assumed that it would pump the EBM without problem. The literature that came with it said was designed for use with commercial formulas, but the people I spoke with said it would pump any liquid.
Things did not go well from the beginning…
After having many headaches from error messages and clogged pumps, and many phone calls with technical service, it was determined that a likely cause was the EBM I was using. I actually had one sales person tell me I should mix commercial formula in with the EBM to make the pump work better! I was floored! Here I was going stark raving mad pumping seemingly 24 hours a day to feed my baby, and here was a women telling me to use Similac! Needless to say… I complained and she denied saying it.
All the sales representatives I spoke with said the pumps should work fine with any liquid… it was the technical service people who said right away that it was likely the EBM. Human milk is unlike any commercial formula – the lipids (fat) within the milk “trick” the pump, clog the tubing, and resist flowing smoothly. The usual solution of letting the liquid rest a few minutes to reduce air bubbles doesn’t work because, by definition, you don’t want to let EBM rest – this is what allows the fat to separate and stick to the tubing. For infants, especially little under weight ones… it’s this lovely fat that you want them to get – certainly not have it washing down the drain.
This was my first real experience of advocating on behalf of my son… and proving to myself that an exhausted, stressed out, medical mom can be a force to be reckoned with! The sales supervisor I spoke with seemed to be under the impression I was a frazzled mom who didn’t know how to use the technology. However after submitting my 4 page letter outlining every problem we had experienced over a 3 week period; copied to our funding provider – he quickly took notice. I’ve included this letter at the end of the post… just for humour’s sake :).
It was at this point we were loaned the Infinity orange version.
The infinity “orange” pump has many of the same characteristics as the Infinity blue model I wrote about previously. However this model was designed specifically for use for small volume feedings, such as in hospital NICU’s. It has a lower maximum rate (300ml/hour) and comes with its own smaller volume food bags, although it can also be used with the larger bags designed for the Infinity blue.
The most important difference is the “human milk” option that can be selected. While the Infinity blue has no option to select different liquids, the orange version allows the user to choose between commercial formula or human milk. The human milk selector reduces the sensitivity of the error messages, allowing for the lipids within the milk to “clog” or “stick” together more than commercial formula would, without setting off a no-flow error. For us… this was the big difference.
Having said that, the infinity orange was not a practical long-term option. The maximum rate of 300 ml/hour meant that at age 5-6 month, Henry had just about outgrown the maximum rate already. We would have had to slow down the rate at which we were feeding him, and for us, this was not an option. 30 minute meal times mimicked typical eating and this was always our long-term goal.
So… as nice as it was to have this option, we returned the Infinity orange. In the meantime, our Infinity blue had been shipped to the technical service department in Ontario for servicing, and while we continued to consistently have errors as long as we used EBM, it was improved once the pump had been serviced (although I’m not sure why!).
Here’s my rather long-winded letter… what can I say – I was a sleep deprived, frustrated, stressed-out mama! I’ve removed the names of the specific people involved.
In follow up to our previous discussions regarding Henry’s EnteraLite Infinity Enteral Feeding Pump (manufactured by ZEVEX; commonly referred to as the Infinity Blue), I am pleased to provide this summary of the problems we have experienced and the information we have gathered regarding the use of this pump with breastmilk. As I indicated, Henry has an NG-Tube and is fed almost exclusively with this tube. We use only breastmilk (no formula) and are committed to continuing with exclusive breastmilk for as long as possible; up to his first birthday or until his nutritional requirements necessitate a change. However we have been experiencing increasing problems with our current pump, and in our search to resolve them, have discovered that the EnteraLite Infinity does not support the use of breastmilk.
When Henry’s NG-Tube was first inserted at BCCH (at approximately 6 weeks of age) we used the hospital’s Kangaroo pump, and continued with a Kangaroo Pet pump when we returned home. Upon acceptance by the At Home Program, we were sent the EnteraLite Infinity (blue) pump we currently use. As his volumes increased, we noticed that the pump’s dosage appeared inaccurate. The pump delivers more than the volume counter reads. For example, the pump is currently set to deliver 112 ml, however approximately 120-125 ml is actual given. At first we believed the inaccuracy was with our bottles and assumed the pump was correct. However after using several types of measuring devices (including the bottles used at BCCH), we concluded that our measurements were correct and the pump was inaccurate. To test this theory, I loaded the pump with tap water; set it to deliver into a bottle, and again it was inaccurate.
At the same time, we began getting “ERROR 63” messages during the pump’s initial self-check. The operation manual did not specify this particular error, only stating that the pump needed to be restarted and should the problem continue then technical support should be contacted. We also noticed that the alarm that sounds during the self-check had changed tones. Our overnight nurse also commented on this change and stated that the other family she worked with had that same pump and ours was now sounding different.
At this stage, I contacted ZEVEX customer support (1-800-970-2337). After speaking with several people we were told that the pumps were definitely accurate but that our problem may be with the breastmilk we were using as human milk can “play tricks” on the machine due to the lipids within the milk. They were unaware if the error message we received was associated with this or not and indicated that the Infinity Orange pump may be a better option. It was recommended we contact our provider for follow up.
Unaware of who our “provider” was, I contacted the At Home Program (888-613-3232); and was told that if a new pump was required then it could be arranged, but I needed to contact our NSS Coordinator. As Karen is on holidays, it is at this point I was put in touch with yourself. Following your advice, I contacted the Technical Service Department for Maquet-Dynamed, the distribution company for our pump (800-227-7215), and they recommended I speak with a Sales Representative regarding the various pumps available, our use of breastmilk and any correlation between this and the pump’s error messages.
I spoke with a Maquet-Dynamed Sales Representative, and she confirmed immediately that the pump is not designed to use breastmilk and this was the cause of our problems. After consulting with her colleague, she confirmed that none of their pumps will work with human milk – they are specifically designed to be used with enteral nutrition solutions. When I questioned why breastmilk couldn’t be used, she said it was because it was too “liquid”. The pump can’t measure the volume of something that “liquid” – it works with “solids”. Not being familiar with nutritional solutions, I asked about the term “solid” and she said that the pumps work best with a canned solution that is thicker than breastmilk. She indicated should we continue using breastmilk, we will experience increasing problems until eventually the pump will not work at all. Her recommendation is to switch to a nutritional solution and mix small amounts of breastmilk in with this solution (she also said that in her 6+ years with the company, no one had ever inquired about using the pump for exclusive breastmilk!)
We are firm in our commitment to continue feeding Henry breastmilk, even though he is unable to breastfeed. From my understanding, the Kangaroo Pet pump we originally used isbeing discontinued as the bags will no longer be produced next year. However as an interim solution for our specific case, perhaps we could obtain a second-hand one to use until either a different pump can be found that will work with breastmilk or until Henry’s nutritional needs change and we need to begin using a nutritional solution.
Over the past couple of months, I have come to understand that we are somewhat unusual in our commitment to use breastmilk and perhaps this is why the problems we are experiencing have taken people by surprise. Personally, I am quite astonished that there appears to be no pump available that supports the use of breastmilk and that the only recommendation from the company is to switch to formula!
Thank you so much for your help – I certainly appreciate your getting involved and helping us to find a solution for our problems. Should you have any questions or need further information, please do not hesitate to contact me. Please feel free to share this information as needed.
Follow Up Notes:
06/08/10: email sent to At home Program
09/08/10: telephone conversation with At home program ; reviewed concerns; she assured other families were using BM with infinity blue pump; she will contact Maquet Dynamed to verify pump specifications
- She indicated (Maquet Dynamed Sales Rep) assured her that pump will work with liquids such as BM.
- We are to contact (Maquet Dynamed Sevice Department 800-227-7215) to arrange for our pump to be serviced.
10/08/10: contacted Service Dept; new Infinity blue pump couriered
11/08/10: new pump arrived; experienced numerous “No Food” errors when milk was still in pump (more than original pump; no self check errors). “No Food” error is due to air in milk that “trips” sensor.
12/08/10: contacted Service Dept; she will consult with Clinical Department and factory.
- Clinical Department indicated that Infinity blue is not designed for BM; the sensors are calibrated for feeding solutions; they recommended trying the Infinity orange since it can be set for either formula or human milk.
- She will courier Infinity Orange to local Service Tech. He will personally deliver and check current pumps.
- Contacted At Home program and provided update.
13/08/10: (Service Tech) delivers Infinity Orange; takes original Infinity Blue; leaves Infinity blue loaner pump.
- Confirmed that self-check errors with original pump are due to (1) error 63: soft ware problem (2) error 99: battery problem
- Says infinity blue bags can be used with infinity orange pump; reviewed how to remove air bubbles from bag and tubing; We can use both pumps for a few weeks to see which will work best for us.
- Initially Infinity orange pump works great – no “No Food” errors at all; concern that pump rate only goes to 300 ml/hr – Henry will outgrow this rate quickly (as we feed him over a 30 min period).
14/08/10: continue to use both Infinity Blue and Orange; blue continues to have numerous “No Food” errors; changed pump once mid feed after many errors, continued with Orange pump error-free.
15/08/10: Infinity Orange has “Error 63: during initial self check; feed continues with no problems.
- Next feed, pump does not display “No Food” when first section of tube is empty – continues pumping until entire tubing is empty and we have to manually stop pump or else it would have pumped air into Henry.
16/08/10: Infinity Orange continues to pump with large air bumbles going past the sensors.
18/08/10: Telephone conversation with Service Tech; can rate on Infinity orange be increased?
19/08/10: Shawn spoke with Service Tech – rate cannot be increased. We are to decide by Monday whether we want to keep blue or orange pump, until our original blue pump is returned (4-6 weeks)
20/08/10: Telephone conversation with At Home program
- She had been contacted by someone from the NICU (I can’t remember the women’s title) at Childrens regarding the pumps; the NICU had been contacted by the lactation consultant we had been in contact with.
- they were going to be placing an order shortly for some Infinity Blue pumps for training purposes and that they have now placed that order on hold until this issue can be resolved.
- she is going to send another Infinity Blue – this time an older one from the Red Cross; there had been another family with issues – not with BM (their child is older and receiving a feeding formula) but they were getting the same “no food” errors continuously; when they received an older replacement pump their issues were resolved; if this is the same for us, then perhaps there is a general problem with these newer pumps that needs to be addressed
23/08/10:Service Dept – confirmed that rate cannot be adjusted on Infinity Orange pump. Orange is a newer model and, according to the factory, it was based on feedback from the blue pump that the breast milk setting was added. The factory informed her that the blue pump cannot be used to pump BM, although some women can successfully use it for that purpose.
- Error 63 during self check with Infinity Orange.
24/08/10: Infinity Blue received from Red Cross. One “No Food” error on second use.
- Error 63 during self check with Infinity Orange.
26/08/10: Error 63 during self check with Infinity Orange. (two times)
- stopped using Infinity blue pumps due to Henry’s vomiting. Unknown if this is related to different pumps. Only using Infinity orange until problem resolved.
27/08/10: Error 63 during self check with Infinity Orange.
28/08/10: Error 63 during self check with Infinity Orange. (two times)
29/08/10: Error 63 during self check with Infinity Orange. (four times)
- Pump did not display “No Food” when first section of tube is empty – continues pumping until entire tubing is empty and we have to manually stop pump or else it would have pumped air into Henry
30/08/10: Switched back to Infinity blue pump from Red Cross (first time using it since last Thursday); two “No Food” errors
31/08/10: Infinity blue from Red Cross: repeated “No Food” errors this morning – stopped using at at 7 errors and switched back to the Infinity Orange; finished feed with no further errors.
21/09/10: Have been using Infinity Blue almost exclusively as Henry has outgrown the rate capacity of the Infinity Orange. Blue pumps tends to work well, however “No Food” errors continue; usually workable however have switched back to Infinity Orange occasionally.
- Infinity Orange has continual “Error 63” message; averaging 1 in 3 times used; has not displayed “No Food” error when it should have and continues pumping until entire tubing is empty and we have to manually stop the pump.
- Telephone conversation with Service Dept: our original Infinity Blue pump is still at factory under repair; factory is doing an indepth analysis of problems. There may be a recall in the future once problem is rectified.
- Informed her of our Infinity Orange concerns; she says that pump model is very new and the models they have at the office are not well used. She will forward concerns with the pump once it is received.