Here are some rejected, although sweet, Christmas card pictures.  

I keep telling myself I've been too busy to blog, but the truth is that I've run out of words (those who know me well can quit laughing now).  Really, I feel kind of numb.  Paul and I have been saying that for months now, but I mean it this time.  It is the only explanation for hearing that Lilah has "developed pulmonary hypertension, has some fluid around her heart, has to go back on continuous oxygen, and will probably need a feeding tube" and not crying.  She is much better this week.  The oxygen has reversed the pulmonary hypertension, and the fluid is reabsorbing.  Most importantly, she acts like she feels much better the past few days.  It's so sad to me that, while I haven't come to 'expect' these things, I have kind of steadied myself to take them as they come.  I am learning it's one of the keys to survival of this game.  

It's like the game on that Japanese game show where the contestants are trying to make it to the top of the grease-covered mountain and these humongous balls come randomly rolling down.  There is no way to predict what is next or what it will do to you....some balls injure, some knock you flat, some knock you off.  It's impossible to know how the game will end.  But, I'm putting on my helmet, stretching out, and yelling "arragotchee" (the contestants yell something and pump their fist over their head before they begin.  I can't remember the actual word in Japanese...I made that one up.)  All this to say that the rollercoaster of good news/bad news sucks, but that sweet face is always worth it!

God continues to bless us richly in the midst of sadness.  We are so thankful for the sweet, loving way that Lilah is cared for by her doctors and nurses.  These people are amazing-they are kind and compassionate and friendly faces in the storm.  Lilah's doctors are hers because they 'happened' to be on-call when the crisis broke:)...a reminder to us of His sovereignty.  I'm sure it sounds crazy, but He has given us a great joy in this time as well.  The Lord is teaching us what truly matters...and there is a lot of freedom there--freedom to let all the other "stuff" go.  Most importantly, He gives us hope.  A hope to experience His goodness in this life, and the promise of restored, everlasting life.

Here is how you can pray:

1.  We are traveling!  I'm so excited...it feels really 'normal' and I can't wait spend Christmas

    with my family and have a change of scenery.  Pray for health for all of us and a peaceful visit.

2.  That she is comfortable.  It's sad enough that she has all these problems, but it kills us that

she could be in any pain/discomfort (from lung issues, reflux, etc.)

3.  For our insurance to approve a nurse to help on occasion. It stresses me out to

think we are the only ones who can care for her and it's more than a 'babysitter' could handle.

Paul and I are humbled by so many of you who have been praying for Lilah and our family. Thank you, thank you, thank you!

Look at this face....my sweet Garrett!  Having him is like having "in house" therapy.  He is happy, energetic, joyful, and loving. (I could go on for hours about all he says and does, but I will spare you)  I love this boy....so much that it breaks my heart (too).  My mom always says that "motherhood is not for sissys."  This is maybe not the most profound thing she has taught me , but it sure might be the most truthful.  Loving so deeply makes me vulnerable, raw, exposed.  Being a mom is hard and I have the distinct impression that it will get much harder for me.  But oh, the joy is worth it!  Now I have (get) to go play "where Garrett go?" for the 30th time...

The Lord is close to the brokenhearted, He saves those crushed in spirit.

Psalm 34:18

We found out last Thursday that a genetic test run the last time Lilah was hospitalized came back positive for an abnormality. This abnormality, which was most likely spontaneous at conception, has caused a deletion of a portion of one of her chromosomes.  As explained to us today at the genetic counselor, this "altered" DNA is present in every cell in her body and accounts for all of the problems with Lilah's health, and many more that will present as she grows.  Children with this specific (un-named) chromosome deletion suffer from moderate to severe impairments in nearly every area of development and life.  

It has taken us these last several days to gather the strength to both absorb and share this terrible news.  We are absolutely brokenhearted...crushed in spirit and praying fervently for His saving grace.  We are grieving all the plans that we had for our daughter and her life and looking forward with trepidation to all this diagnosis holds.  We feel strongly that we owe it to Lilah to hope for the very best and pray for a miracle, despite her grim "prognosis."

Certainly this looks nothing like the life we thought she would lead, but we are still confident that her disabilities are not an accident. She is a child of the Lord, He loves her even more than we do and He allowed this and has a purpose in it.  

His promises are the same for Lilah-

"For I know the plan I have for you,' declares the Lord, "plans to prosper you and not to harm you, plans to give you a hope and a future."  Jeremiah 29:11

Please pray for us, for peace, hope, and strength and pray for Lilah's life to be full of miracles.

-Gina & Paul

Lilah saw her cardiologist today and got a great report.  Her doctor was pleased that she had come through an illness without any negative effects on her heart function.  She was not nearly as cautionary as I had originally thought about Lilah getting sick.  Obviously she still wants us to be very careful, but Garrett can continue at Mother's Day Out--which I am so thankful for because it took us months to get him to like it and it wouldn't be very fun for me (or him) to drag him along to our countless appointments (Lilah had 16 doctor visits last month!!).  Heart wise, things are pretty much as good as they can be right now, given the severity of her condition.  She is still on oxygen, but Dr. Bremer says it's not because of her heart.  We are trying an inhaled steroid and hoping that gives her lungs the "bump" they need to overcome the need for the extra O2.

It has been a really hard week for me....really sad and totally overwhelmed.  It seems like Paul and I take turns as the comforter and the one needing the comfort as the weeks pass.  I'm sure this is no accident.  

I am constantly reminding myself to take it one day at a time, remain hopeful, and be thankful. I think I forgot to post this, but Paul, Garrett, and I all had normal echocardiograms! We have switched Lilah to some special, anti-reflux, liquid gold, formula...and...she is gaining weight!!!! I have been totally, crazily, obsessed about her eating, so this gives me some peace:) Also, although she is still very hypo-tonic  (low muscle tone), she is gaining more head control by the day!!  And, my mom is here, as great logistical and moral support!  Here is a sweet picture of her (before the oxygen) to remind you to pray:)

Home Again

We made it home late Friday night with oxygen in tow.  I'm definitely grateful to be home to my boys and have Lilah back in her own bed, but really disappointed that she's still needing the O2.  Like last time, coming home makes our situation somehow more "real".  I felt like we had just barely gotten to a place where we were at least getting into a routine and now we have even more equipment and medicines.  That brings the grand total of daily medicines to 10, with half of those given twice a day and some extras on occasion.  Lilah's "equipment" includes and chest strap/electrode contraption for heartrate/apnea for when she's asleep, an O2 monitor around her foot, and oxygen in her nose hooked to this huge O2 generator.  All of these things (and mostly the O2) make it really hard to transport her from one place in the house to another.  One of the many things that weigh heavy on my heart right now is that she has hardly any 'baby time'.  I feel like it's one procedure after another.  She's doing pretty well, but seeing that oxygen in her nose makes her look so sick and absolutely breaks my heart. Pray, pray, pray that we can get her off of it soon!

We are back in Children's Hospital this week:(I have fallen off the blog updates because it has been chaos around here lately.  The quick version is that Lilah started running a fever last Saturday night.  Because of her fragile condition, her pediatrician wanted her checked in the ER.  Many tests, pokes, and hours later, we came home with a "it's a virus. her heart looks good" diagnosis.  Headed to the pediatrician Saturday, as she was still running a temp.  He gave her an antibiotic shot, she had some terrible reaction to the pain (a vaso-vagal response?), turned gray, and Lilah and I headed to Children's via ambulance.  We hung out in the ER to make sure that it was just a reaction to the shot and she was cleared to go home.  Monday, back to her doctors office (in case you haven't picked up on the trend, her doctors keep very close tabs on Lilah) where the O2 monitor reported oxygen saturation levels in the low 80s (you want 100).  So, because she was dependent on the oxygen, we had to be admitted to Children's and travel by ambulance.  

Post chest xray, lots of labs, echo, and EKG...they still say "it is/was a virus".  Apparently, her little body just got worn out from fighting it and is having a hard time oxygenating her blood.  We are in the process of weaning her from it and are hopeful to go home soon (she has to have at least 1 night O2 free for release).

We are doing okay.  This has definitely not been as hard as last time (although the second ambulance ride did get to me:( ).  I'd say we are feeling emotionally tired and missing having our family together.  There is sadness and loneliness that comes every time we are reminded of the hard road ahead.

Lilah looks great, though.  She is smiling today and eating well.  She gives the nurses and lab workers her "opinion" (which is negative!) on procedures, which thrills me to no end.  It means that despite this step back, she has made many steps forward from that terrible day when they told us she was in serious heart failure.

We continue to be thankful for God's goodness and hopeful for the plans He has for her precious life.  As always, we covet your prayers.