Learning to use my Voice

Let me start by saying that, as much as I like to talk and talk openly about anything and everything now, I used to struggle to voice my opinions and questions to medical professionals. I am not sure why, maybe in my earlier years I used to think they are the ones who went to school forever so they must know everything about what I need them to know about. Well I do believe many doctors have a well rounded education, I also now know that we need to voice concerns and it is okay to ask the doctor to explain themselves and/or explain how I am feeling about what is going on. Well I have been struggling with trusting Luke's metabolic team since before Christmas but had kept pretty quiet about it, thinking that they are the experts and they will let us know what needs to be done. 

Since Christmas Eve Luke's phe levels have been well below the "safe" range which is not immediately dangerous but it also not ideal for helping him grow. These low phe levels are caused by Luke not getting enough protein (which he gets from breast milk) so we have been adding more breast milk to try and bring the levels back up. 

Now we have a few things working against us in all of this: 

1. Luke is a growing baby who is having random & unannounced growth spurts as is perfectly normal and expected
2. We live in Spruce Grove, so we take his heel pokes to the local hosptial who then transfers it to the Stollery Hospital the next day, who then takes a day (sometimes 2 days) to give the results to the metabolic doctors and then we make an adjustment to his feeds (about 3 or 4 days behind when the levels were taken.

As you can imagine 1 + 2 is equaling a nightmare for trying to stay on top of Luke's needs which is very challenging. Over Christmas and New Years it seemed like everything conspired to work against us. Due to holidays getting his tests into the lab was difficult and took longer to get results and Luke had a growth spurt over the holidays. So this means his phe levels tanked big time. We are talking his phe level was down to 6 at one point (we want him much higher - more like 200).

Jeff and I talked frequently together and with family about how it just seemed like the metabolic team was not doing a big enough increase to get him back up. I gently mentioned it at one point but didn't push when the dietitian made an increase on breast milk smaller then we felt it should have been. But I found my voice on Friday. After hearing that his levels had gone from 87 to 55 despite an increase I had to say how I was feeling.

I explained my concerns and how I do not understand why they are not more concerned about Luke's continued low levels and this lead to a very enlightening & helpful conversation with the dietitian. She explained that they would only be concerned about levels around ~50 or lower - as this is where non-PKU people are. However it would be a concern if his weight is not increasing as it should. I also suggested an extra heel poke for the week ahead due to Luke getting his two month shots on Monday - she was very receptive and told me she thought that would be a great idea. I hung up feeling like she was willing to listen to my concerns and ideas and she treated me as someone who has a say in what Luke's plan is.

Over the weekend we weighed Luke and we were so pleased to see 8lbs 7oz on the scale! However today I spoke to the dietitian and this is not the great news they had hoped to hear. He has slipped down again on the growth chart and that is not what they (or anyone) wanted to see. 

So what does this mean? Well it would seem that the time spent with levels lower then they should have been he hasn't been able to pack on the weight. So they have increased the calories that he gets from his PKU formula and we will see if that paired with an increase in breast milk will result in a better weight next week - if not we will need to talk about supplementing my breast milk with some regular formula or possibly just adding some PKU formula powder to every breast milk bottle to give it a higher calorie content.

All this on top of Luke's first set of immunizations has lead to me feeling slightly overwhelmed by it all. I have my moments where I hate PKU with a fierce passion but then I also have come to accept it as part of our normal. It wont be going away, so I just need to keep adjusting and keep adapting - just as all new Moms need to do. Thank God we have such an amazing support system around us and I have so many fantastic people who lend me their shoulder and their strength. 

So I am going to leave with a quote that saw me through many hard days in my infertility journey.