We started a new diet plan on Friday the 16th that was a big deal, it was a big step. We went up to a very high amount of breast milk, high enough that since that Saturday he had only had phenyl-free formula fortified breast milk leading up to the Tuesday following that diet change. We had been adding the phe-free formula to every bottle of breast milk so that Luke gets the extra calories he needs to catch back up on his weight growth.
Well as of Monday the 19th he weighed in at....
9lbs 6oz!!!
*Cue Mommy doing a happy dance in the hospital and praising her big baby*
The dietitian was pleased with this weight increase and we just needed to wait to see what his levels are from his Sunday heel poke following that change. The Sunday heel poke would reflect 3 days at the high level of breast milk and when we got those results we would have a good guess as to how high his levels had gone and make a new adjustment. It seems like a great thing that we went all breast milk for so long but the truth is that it was (once again) an effort to cause his levels to go high so we can get closer to his balance.
Well 2 hours after the dietitian and I spoke about his weight gain over the week and how he was doing with the formula fortified bottles she called me back (this is on Monday the 19th) and said that they had had a meeting about Luke and his plan and that they as a group felt they had to make some changes due to what they suspected Luke's levels would be at. So after thinking that the plan we were on was great, they changed it. Sigh.
Wei-Lynn is the dietitian we have been dealing with since Christmas and she has been great at listening to me and talking things though with me. Well during the phone conversation about the new diet plan she explained that infant formula (such as Similac) has a higher phe content then my breast milk and that the team felt Luke needed the phe boost... now this is where I went what?!? My PKU child needs more phe? What the heck?
Well there is a reason for this, we must keep Lucas on the Phenyl-free formula for a few reasons (a big one being that we have to keep him liking the taste because if we stop it and then need to add it back in he may not take it - which could be very dangerous to his health) BUT by giving him a phe-free bottle everyday we were taking away from his phe intake. So the plan was made on the 19th to start adding Similac formula to his breast milk bottles which shocked me and what was even more shocking was that Wei-Lynn warned me we may have to replace some of the breast milk bottles with all Similac formula bottles.
Fast forward to the 22nd when we got Luke's labs back from Sunday which were, as the team guessed, very low again (21 phe for those keeping track). SO I got the new diet plan - making this the third diet change in a week for us! Luke now has one bottle of phenyl-free formula, one bottle of Similac formula and then the rest of his bottles are breast milk with Similac added (but only up to 770ml of breast milk a day). Seem confusing? Yeah it always takes me reading the email a couple times to get it down pat.
Another curve ball? The dietitians are frequently changing the concentration of his formulas as well - meaning I have to follow specific recipes for his bottles (not necessarily the one that the formula bottle says). Here is the email I got to confirm his diet plan:
I did have a few questions which we managed to clear up but needless to say this is a lot to take in and adjust to. In the end all that matters is that we are all working towards the same goal: Keep Lucas healthy and happy.
Sorry for the delay in posting - it took longer to write up then I thought and this latest change has actually been a bit of a hard pill for me to swallow with replacing breast milk with formula, as it is just not something I ever thought I would have to do - especially with my oversupply of milk & Luke's PKU. But that's the way things work; just keep adapting. Thank God for friends and family who help us so much, there are days I couldn't do it without their love and support.
Well 2 hours after the dietitian and I spoke about his weight gain over the week and how he was doing with the formula fortified bottles she called me back (this is on Monday the 19th) and said that they had had a meeting about Luke and his plan and that they as a group felt they had to make some changes due to what they suspected Luke's levels would be at. So after thinking that the plan we were on was great, they changed it. Sigh.
Wei-Lynn is the dietitian we have been dealing with since Christmas and she has been great at listening to me and talking things though with me. Well during the phone conversation about the new diet plan she explained that infant formula (such as Similac) has a higher phe content then my breast milk and that the team felt Luke needed the phe boost... now this is where I went what?!? My PKU child needs more phe? What the heck?
Well there is a reason for this, we must keep Lucas on the Phenyl-free formula for a few reasons (a big one being that we have to keep him liking the taste because if we stop it and then need to add it back in he may not take it - which could be very dangerous to his health) BUT by giving him a phe-free bottle everyday we were taking away from his phe intake. So the plan was made on the 19th to start adding Similac formula to his breast milk bottles which shocked me and what was even more shocking was that Wei-Lynn warned me we may have to replace some of the breast milk bottles with all Similac formula bottles.
Fast forward to the 22nd when we got Luke's labs back from Sunday which were, as the team guessed, very low again (21 phe for those keeping track). SO I got the new diet plan - making this the third diet change in a week for us! Luke now has one bottle of phenyl-free formula, one bottle of Similac formula and then the rest of his bottles are breast milk with Similac added (but only up to 770ml of breast milk a day). Seem confusing? Yeah it always takes me reading the email a couple times to get it down pat.
Another curve ball? The dietitians are frequently changing the concentration of his formulas as well - meaning I have to follow specific recipes for his bottles (not necessarily the one that the formula bottle says). Here is the email I got to confirm his diet plan:
Hi Tatrina,Lucas’ new plan:
- Continue with 1 feed a day of Phenyl free 1. Ideally, 100 ml at least a day
- Switch out one bottle of breast milk for Similac Advance. The recipe for the Similac Advance = 16 grams powder and add 90 ml water.
- Let’s continue to concentrate the breast milk with Similac Advance (3 grams powder for every 100 mL).
- Do AAQ bloodsdraw on the same day you do Lucas’ bloodspot. It would be best to do the AAQ before his feed.
- I have attached the requisition for AAQ for you to take to the lab when you do his bloodwork.
Let me know if you have questions!
I did have a few questions which we managed to clear up but needless to say this is a lot to take in and adjust to. In the end all that matters is that we are all working towards the same goal: Keep Lucas healthy and happy.
Sorry for the delay in posting - it took longer to write up then I thought and this latest change has actually been a bit of a hard pill for me to swallow with replacing breast milk with formula, as it is just not something I ever thought I would have to do - especially with my oversupply of milk & Luke's PKU. But that's the way things work; just keep adapting. Thank God for friends and family who help us so much, there are days I couldn't do it without their love and support.
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