Parenting PKU

I spoke with Melissa the dietitian today and despite a large  increase we did about a week ago (which we were all sure would send his levels higher) Lucas`phe levels did not do the big jump we expected. He stayed on the lower end of the safe levels. This has to be because of another growth spurt which Jeff and I agree explains the 2.5 hour feeding schedule.  This is wonderful news and we were able to increase his breast milk intake again! ** I am doing the happy dance as I type this ** To give you an idea of what it means to increase his breast milk intake here is an example of a day of bottles: On average Lucas has 8 bottles a day so that would mean, for example, of these 8 bottles on Saturday four were breast milk (400ml) and four were the PKU formula (330ml). So he is, on average, taking more breast milk then formula :) We hope this trend continues!! Wishing everyone a very very Merry Christmas & A Happy New Year!!

Well Lucas is 6 lbs 8 oz today which is great! Little man has come so far in growing which is great because with his levels being so low there was a chance he wouldn't gain. We have increased his breast milk again and we will likely have these results Monday to see how high his levels have climbed - we hope this is the perfect amount but there is a chance it might be a little too much. Lucas smiles more and more everyday and really reacts to Jeff and my voice. He can now sit in the swing and it is hard to tell if he enjoys it or if it annoys him, he makes lots of noises - squeaks and little cry/whimper noises. He is also starting to react to people who he sees often like Grandma and Grandpa. We have a camping trip planned for August for a family reunion and it is amazing how I am already thinking ahead and wondering where we will be with his levels and what he will be eating. But those are worries for another day, today I am just going to bask in his baby smell ♡

Lucas went through a growth spurt a week ago and we have learned that this would actually greatly effect his levels. When we met the dietitian she mentioned that things like illness & growth spurts would lead to fluctuations in his phe levels and this was proven true. He went from right in the normal range down to the lower levels of where we would want him to go. Now it isn't life threatening dangerous to dip down in levels but in order for Lucas to continue to grow we had to get the levels back up which was done by adding more breast milk to his diet. This was nice as we were able to leave the breast milk levels high so far and as of Thursday last week we were back in the good range for his phe. Now today, Tuesday, we are back way down. Sigh. It's a bit like a roller-coaster.  Now all we wait for is the green light from Melissa the dietitian to go down to only testing his levels once a week which would mean only one heel poke a week but this will have to wait for h

While visiting a doctor's office for a standard procedure for Lucas I had panicked moment when they went to give him Infant Tylenol. I realized I had no clue what medications he would be allowed, only that there was many he would not be able to have due to ingredients that would effect his phe levels. We stopped them from giving it to him and I placed a call into his dietitian to inquire. The Tylenol is fine, as it has no aspartame.  This served as a strong reality check for me that this is something that will happen in his life and I will have to find ways to adapt and make decisions based on the knowledge I have of his condition. This is where again I am thankful for our health care system where I am able to call his clinic and they can help us out.

Well our little man is now four weeks old and getting closer to his due date! Almost time for the doctors to stop adjusting him to gestational age - now they will just adjust his age starting from his due date. But we don't care about that! Lucas is 4 weeks old to us!!! The last week Lucas has been going through a growth spurt which has made things a little interesting on the PKU front as it has caused big changes in his Phe levels. When he goes through a growth spurt or when he gets sick he will need higher levels of protein to keep up. This meant we increased his breast milk intake by quite a bit which hopefully will help him put some more weight on. He weighed in at 5lbs 12oz on December 4th and we will have an updated weight on Thursday this week. As people can guess we have decided to bottle feed Lucas due to needing to closely monitor exactly how much breast milk he is getting vs how much formula he needs. He still gets my breast milk, but this just means I pump and bot

The Monday after Jeff and I found out that Lucas had PKU we went into the Stollery Hospital in Edmonton to meet with Melissa and the rest of Lucas' team of doctors. Lucas has 2 metabolic genetics doctors, 2 dietitians (including Melissa) and a few resident doctors.  First they sat us down and did an in depth family tree for both of us and asked us many questions about family and siblings. We learned that there was a chance that all of our siblings would be carriers of the PKU allele but the chance of them meeting another PKU carrier (and therefore deciding to have kids) is 1 in 2,500. At the moment there is no way to screen for a recessive PKU allele so there is no way to know in advance if someone has the recessive allele.  We got a lot more information on what PKU is (see  here  if you didn't read the introduction), how it will effect Lucas' diet in his long term future and what it means for the immediate future. We discussed the formula that Lucas will be on and what

When Lucas was born he was premature by 5 weeks, meaning he was in the NICU at the hospital overcoming some "preemie" challenges when my husband and I found out about his PKU. I had just been discharged that day, Saturday Nov.15/14, and was trying to come to terms with the fact that I would be going home that night without my baby. As many can imagine I was a mess and not at all impressed that I could not stay. After we had held Lucas and said our goodbyes a nurse came up to us and said a nurse practitioner and dietitian needed to speak with us.  I looked at Jeff and we both knew what this meant. Wednesday that week a doctor came to me and mentioned that some levels of Lucas' heel poke test came back irregular and that not to worry they would run it again. I asked which levels and then quickly googled what it was... then shut my phone and said "nope, that can't happen to us" In that moment however, as the nurse lead us to a private room, Jeff and I knew.

Hello & thank you for taking the time to find and start reading this blog about our journey as we discover what parenting an infant with PKU means for us. Now most people who we talk to (including a fair amount of medical professionals) have no idea what PKU is or what it means to have this condition.  So let's start by trying to explain PKU to those who don't know what this condition is (just like Jeff and I the day the doctor told us that Lucas had it). The following is information provided by  http://www.canpku.org/  which is the Canadian PKU site. PKU is short for phenylketonuria (pronounced fen'-il-kee'-to-nu'-ria) PKU is a rare, inherited metabolic disease that results in mental retardation and other neurological problems when treatment is not started within the first few weeks of life. (Lucas' condition was caught within the first days of his life and treatment was started the same day) People with PKU are missing an enzyme to break down pro