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.
We met with Lucas' nurse and a dietitian named Melissa who sat us down and explained that the 2nd test had come back with elevated levels and that it was confirmed that Lucas was indeed a PKU baby. Melissa gave us a quick run down as to what this was, explained that Jeff and I were both recessive carriers, touched on Lucas' future diet and then she got down to the big reason she was there. She was there to teach us and the nurse how to properly mix and store the special formula that Lucas would need to eat. I was shocked.
My plan from day one was to breast feed my baby and that plan had already taken a hit because Lucas regressed around Friday where he would not eat, meaning a feeding tube had to be put in. I was still reeling from that when Melissa explained that Lucas would still have some of my breast milk but that bottling my milk was going to be the best option to control just how much of my milk Lucas got. That is about when I broke down crying.
Jeff and I came home and held one another as we sat there trying to wrap our brains around something that we honestly knew very little about. I cried at the unfairness of it all. After over 5 years of trying to get pregnant, after fighting through 3 weeks of bed rest at home & 12 days of bed rest in the hospital, after an emergency c-section at 35 weeks, we now had to face this? I was so hurt, so mad and so scared for my sweet little boy.
We called our parents and had them come over so we could break the news, and to us we needed the support even if I wasn't in a frame of mind to accept the support. As always our parents where amazing, putting aside what had to be their own fears to offer us support and encouragement.
That night I felt so raw on so many levels and I think Jeff did to. Nothing was right in our world that day but we held each other knowing no matter what we faced we had an amazing sweet little boy who depended on us pulling ourselves together and doing what needed to be done.
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.
We met with Lucas' nurse and a dietitian named Melissa who sat us down and explained that the 2nd test had come back with elevated levels and that it was confirmed that Lucas was indeed a PKU baby. Melissa gave us a quick run down as to what this was, explained that Jeff and I were both recessive carriers, touched on Lucas' future diet and then she got down to the big reason she was there. She was there to teach us and the nurse how to properly mix and store the special formula that Lucas would need to eat. I was shocked.
My plan from day one was to breast feed my baby and that plan had already taken a hit because Lucas regressed around Friday where he would not eat, meaning a feeding tube had to be put in. I was still reeling from that when Melissa explained that Lucas would still have some of my breast milk but that bottling my milk was going to be the best option to control just how much of my milk Lucas got. That is about when I broke down crying.
Jeff and I came home and held one another as we sat there trying to wrap our brains around something that we honestly knew very little about. I cried at the unfairness of it all. After over 5 years of trying to get pregnant, after fighting through 3 weeks of bed rest at home & 12 days of bed rest in the hospital, after an emergency c-section at 35 weeks, we now had to face this? I was so hurt, so mad and so scared for my sweet little boy.
We called our parents and had them come over so we could break the news, and to us we needed the support even if I wasn't in a frame of mind to accept the support. As always our parents where amazing, putting aside what had to be their own fears to offer us support and encouragement.
That night I felt so raw on so many levels and I think Jeff did to. Nothing was right in our world that day but we held each other knowing no matter what we faced we had an amazing sweet little boy who depended on us pulling ourselves together and doing what needed to be done.
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