Tuesday, November 25, 2008

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

Tuesday, November 11, 2008

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:)

Sunday, November 9, 2008

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!

Wednesday, November 5, 2008

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.

Saturday, November 1, 2008


<--This is how the evening started.  I borrowed an amazing peacock costume for Garrett to wear and have been unable to get him to wear it despite various bribes (I think Paul had been telling him it was girly:).  So, we defaulted to Bob the Builder because Garrett already had the stuff.  In a way that only makes sense to a two-year-old, he acted like we were dipping him in hot oil!  Trick-or-treating went only slightly better...I think he actually made it to the door of three houses.  I am constantly amazed at the will kids have...you would think candy would motivate him to let his guard down and 'get into it'.  
In his defense, he has another cold and ear infection! Poor guy!  We are praying that Lilah is able to avoid it, but I am prepared this time:(

Garrett was able to "rally", and loved being back home to sort through the candy and give it out to trick-or-treaters at our house.  He tried to take some candy that looked especially good to him out of their pumpkins a couple of times:)  

<--Here's how the night ended...a success!!