Saturday, July 14, 2012

7.9

     We were discharged Thursday afternoon!  Finally we could take Thomas home, pick up the other kids from the grandparents' house, and just be our little family.  It was such a relief coming home even though the temperature was 105!  Lily couldn't wait to see us and gave me the biggest hug ever when I picked her up.
     That was our first night at home and everything went surprisingly well.  Besides the fact that I just started another year of not getting enough sleep!  Thomas woke up about every 2 hours or so to nurse and get his diaper changed.  On top of that, Lily woke up three times and tried to sneak into our bed.  Of course she woke up while Thomas was actually sleeping.  If it was going to be this hard to get them to bed, the least they could do was wake up at the same times!
Lily the BIG sister!

     Then Friday came.  This was the day that I was expecting a call about Thomas' heel prick results.  We got the call around 1:00 in the afternoon.  It was Barb (dietitian from UIC) and she was calling with the results since our regular dietitian, Dianne, was out of town.  Here's the conversation...
Barb:  "Hi Kelly, I was just calling with the results of your baby's blood test."
Me:  "OK"
Barb:  "His results were 7.9. (Right now, I'm wondering is that high?)  It looks as though this baby also has PKU."
SILENCE
ME:  "OK.  I was ready for the results but was really hoping for a negative." (I'm crying inside and hoping to hold myself together while I'm on the phone)
Barb:  "Are you ok?"
Me:  "Yeah.  I've done it once, so this time should be easier, right?" (Andrew overhears and runs to Ryan to give him the news)

     Barb and I continue to talk about how to start Thomas on formula and when I should take a new heel prick test.  Once I get off the phone, I broke down.  I couldn't help it.  I just started crying.  Ryan was on the computer and told me, it's no big deal, we've already been there.
     This I know.  We've already been down this path.  A path that I never wanted to revisit.  A path about me second guessing myself.  A path where I blamed myself.  A path where I wondered how the future of my child would be.  This is an uncertain path.  Yes, we'd been here before but each path is different.
Thomas using a bottle for the first time with his Periflex.

     This time, I wondered would I go back into post-partum depression.  God I pray not.  This time, I wondered would Thomas be so sensitive to phe like Lily?  Would Thomas love his formula like Lily?  Would I get lucky and be able to get Thomas' levels on track as easily as it was with Lily?  Yes, the diagnosis is the same, but that doesn't mean that everything is the same. 
     This time, I'm a little more prepared.  I'm not being blind sided and I'm not ignorant about PKU and the challenges.  I may doubt myself at times, but I refuse to go down the same exact path as I did before.  I know that I can do this.  I might have to remind myselft multiple times daily, but I really can do this. 
Chloe feeding Thomas his second bottle of Periflex Infant!
     We later gave the news to the kids.  Andrew and Chloe completely understood the news and gave me hugs and told me everything was going to be just fine.  They looked at Lily and said "Now Lily knows another person with PKU and she knows she's not alone!"  How do kids have such wisdom?!
Lily heard the news and started jumping up and down "Yeah, baby brother have PKU like mine!  We're both so special!"  Are kids just born knowing what to tell their moms as they're wonding if things will be ok?  My three older kids just gave me the courage that I needed to take the news.  They reminded that life is bumpy at times, but that just makes the journey a little more exciting.


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3 comments:

  1. Hugs to you! Lilly will be great at helping out with Thomas now! They will be able to grow up together sharing the PKU life and having someone besides mom to turn to when it gets tough. While it will likely take some adjusting, you have been here before but this time you are much more equipped to handle such a diagnosis.

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  2. Keep your head up! You are a great mom and you have the knowledge this time around. Kids are so wise!! That touched my heart that the older two knew to think of their little sister having a PKU "pal". I have a 7 month old with PKU who is extremely sensitive to phe so far. When he gets sick, his levels shoot up. When he's teething, same thing. We are actually in the midst of a Kuvan trial at the moment with hopes of a little less fluctuation in levels. I have so much to learn yet. I really love your blog. Hugs to you!

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  3. Just found your blog. I have a 15 month old nephew who also had PKU. This was my sister's first child and they are in the same boat about having another.

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