KG labs

Last week the infectious disease doc called us to give us the results of a another test they ran to learn more about CMV she contracted. One of their concerns was to try to figure out whether she contracted the virus in utero or after she was born. There can be severe complications (including vision and hearing loss) if she contracted the virus in utero.  However, the ID doc found that the counts for the virus were extremely low and we could therefore rule out congenital CMV.  Thank goodness!

However, the virus + alpha-1 together were a bad combo and caused the inflammation of the liver (hepatitis).  Yesterday, we went for more labs and today I got a call from the GI doc with the results. All good news!   Keller's liver enzymes, bilirubin, and a few other counts have all dropped! They still are a bit high but this is still really positive news!  We were anticipating good news because KG is looking so much better!  When we were in the hospital one of our doctors actually showed me how to feel for the liver.  And even though I'm not a professional, I can tell that the liver has shrunk in size significantly!  The whites of her eyes are almost completely white and her little belly is not nearly as distended. She's eating great.  Sleeping well and pooping like a champ!  Go KG! Go!

We will go see the GI doc again in a couple weeks for a checkup and more labs.  So one step in the right direction of healing from this battle with hepatitis.  We are thankful for our doctors!  We can totally feel your prayers and are very thankful!  We will update you all again when we know more in a few weeks.  So, today...we celebrate more good news.  And we give thanks for this beautiful baby girl.

twenty-nine

today was my permanent birthday.  29.  ha!  time has gone so quickly this year.  i feel beyond loved by so many special people in my life and it has been a fantastic year.  i received some VERY special birthday messages, emails, texts, and phone calls.  but none of them compared to this one.  i love this little goober.  here's to another memorable year!


 

three months old

keller grace is three months old already.  this past month has been a whirlwind in every aspect of the word.  we've had some of the highest highs...and the lowest lows.  through it all God has been faithful. my dear sweet keller.  words cannot explain how very loved you are.  i look into your big blue eyes everyday and am filled with so much love and joy.  you are treasured and adored and i'm so grateful that you are ours.  thank you Jesus for this perfect and precious gift.  this past month...

• keller is now 11 lbs 10 oz and 23 inches long.
• she started laughing this month...especially when you tickle her neck.
• keller can put both hands together and reaches out to grab things.
• she is taking three-four naps a day and usually only wakes up once a night...
• she HATES tummy time...but since her liver is still enlarged it's a little more challenging for her to be on her belly.  she doesn't have pain but her little belly is still big its hard for her to balance.
• she usually eats every 4 hours and is awake for longer periods after a feeding
• keller loves being swaddled in her swaddleme blanket.
• she is wearing 0-3 month clothes and size one diapers.
• she learned to like her paci after we went to the hospital.  she only takes it when she's tired.
• keller spent 4 days in children's hospital and was diagnosed with alpha-1 antitrypsin deficiency.
• she coos and makes all sorts of sweet noises.  she's so so smiley.

maternity leave accomplishments

i can't believe that 12 weeks have come and gone.  not only is my sweet baby three months old already, but now it's time to head back to work full time.  summertime was a great time to be home with my two sweet babes.  we spent as much time outside as we could (given how hot it was)!  over the summer...

i mailed out keller's birth announcements.

spent some wonderful time with my parents.  evie & keller loved spending time with their mimi and papa on both of their visits!

wiped out

i fell more and more in love with this perfect two year old.  i laughed everyday and loved every moment i got to spend with her!

i learned that snuggling with my sweet KG is heaven on earth.

we loved getting our farm csa from robinette farms every week!  yummy veggies!

we spent lots of time with my in.laws!  and every moment was treasured!

we took several trips to the local children's zoo.  here is the most recent trip that daddy got to  join us on!  he's been working so hard all summer, so it was fun to get to spend some time with him!

i got to watch evie become the best big sister!  she sure loves her sister!

love my evie girl.

afternoon time was very special all summer long.  i got to spend lots of one-on-one time with KG when evie was napping.

the best part of my summer...lovin on these two.  so blessed.

iDump

Feeling blessed beyond measure.

say what?

alpha-1 antitrypsin deficiency.

huh?  excuse me?  say that one more time please.

alpha-1 antitrypsin deficiency.

what the hell is that?

"The alpha-1 antitrypsin (AAT) protein protects the body, especially fragile lung/liver tissues, from the damaging effects of a powerful enzyme called neutrophil elastase that is released from white blood cells. In AAT deficiency, a genetic mutation reduces levels of the protective protein in the bloodstream. AAT deficiency can lead to chronic obstructive pulmonary disease (COPD), specifically emphysema, and liver disease. A small proportion of children born with AAT deficiency are jaundiced in the early days and months of life. Between 15% and 19% of adults with AAT deficiency develop cirrhosis of the liver after age 50."

you have got to be kidding me right?  did you say genetic disorder?  you told me she JUST had a virus.  how can we be talking about metabolic problems?

deep breaths...  Lord, are you there?  what the hell are you trying to do to me?  can you hear me?  i'm so freaking mad you at you right now.  how could you do this to my sweet baby girl?

lots of tears.  lots of reading about this crazy deficiency.  lots of angry talks with God.  lots of tears.  lots of encouraging words and notes from family and friends.  lots of tears.

and now the good news.  

her liver enzyme levels are decreasing.  she seems to be healing.  she won't necessarily have ANY of the scary symptoms that we have had to read/talk about...but she could.  but if she does get liver damage/disease or cirrhosis...i know we have the best doctors who will recommend the correct route.  if that is a liver transplant, praise Jesus we are an hour away from one of the best transplant hospitals in the world.  praise Jesus that our doctors are taking this seriously.

she just happened to contract the CMV virus as well...which showed its ugly face by inflaming her little liver.  and because of the deficiency, it's slower to heal the liver.  so what now?  we will take KG for labwork every two weeks to continue to monitor the enzyme levels.  as long as they keep dropping we are on the right track.  every two-three months we will go see the GI specialist at Children's.  if the enzymes don't improve...we will talk about a liver biopsy to get a better look at the liver tissue to see what's going on.  then we reassess.  

for now, the whites of her eyes are no longer as yellow.  her skin is pinking up.  her spleen has shrunk in size.  and all of her levels have come down some.  just keep on dropping!!!!

so today, our daughter has a protein deficiency.  she does not have a disease.

tomorrow, i'm going to wake up and kiss her sweet, chubby cheeks and thank the Lord for my perfect baby.

the day after that i will probably yell at God a little bit more.

in two weeks, we will get labs and i will want to punch the phlebotomist in the face for sticking that needle into her little arms.

and right now, i'm going to fix my eyes on Jesus and beg Him to continue to heal my daughter from this virus and protect her little body from any further damage or disease.  please continue to be prayer warriors alongside us.

Sweet Evie

Tonight has been another hard night. Our doctor called to let us know that one of the proteins they tested for on KG was abnormal. Although we don't know what this really means in the grand scheme of things (it could just be because of the infection), it's definitely caused another emotional wave. This roller coaster is painful.

We will find out more this week and next when we meet with our doctors.

Tonight when I was nursing KG I was crying pretty hard. My sweet Evie came over immediately and kept saying "You okay mommy?" She asked me if I wanted a hug and kiss. Which of course i did After that she said "you all better mommy? It's okay mommy don't cry." And stood next to me for 2 minutes and stroked my cheeks and arm to comfort me while I cried.

Lord Jesus, thank you for the two most perfect gifts you have blessed us with. Thank you for Evie's sweet and loving spirit. Thank you for Keller's beautiful smile. Please continue to protect or baby girl. Be a calming spirit to Evie during this roller coaster ride. We trust you. We believe in your healing power. Please comfort us during this time.