Recovering well

It's Paul again:

Well, Lilah's surgery went great today and we are very thankful!  After a busy morning, we handed Lilah off to the surgery team at 11:15 am.  I would like to say that I was steadfast and strong but I was not.  Handing her off was incredibly tough (Gina and I were both saying how we feel like we aged 10 years today).  The surgery seemed to go on forever but was over by 2:30 pm and we were able to see her in the PICU by 3:30 pm.  She gradually began to wake up and her sweet blue eyes were open by 8:30 pm.  She was breathing so well on her own that they were also able to take her off the venelator.

Thank you again for your continued prayers for Lilah.  Please continue to pray for her as her body heals in the coming days.  

Your prayers have been a gift to Lilah and and to us.  

We love you and thank you!

 

Surgery Today

It's Paul here. We have had a unexpected change of plans and Lilah's surgery has been moved to this morning. I just found out a little while ago when Dr. Kennedy stopped by to let us know. Thank you again in advance for your continued prayers for Lilah today and in the coming days. Also pray for Dr. Kennedy and his team. The surgery is, as our great cardiologist said, 'is no slam dunk.' We dont anticipate any complications but with everything that Lilah has on her plate, it definately makes things more challenging. They will be taking Lilah to the PICU after surgery for recovery. We will keep you all posted as soon as we get a chance. You have blessed us by your love and prayers. Thank you!!!!

Update

No surgery tomorrow...it's been postponed until next week. The very condensed version of the story is that we are having a hard time getting all the right people lined up for the surgery at the right time. Until then, we are trapped at the hospital:( It is maddening to be without a plan! But, Lilah is being well cared for by her amazing cardiologist and wonderful pediatrician, as they try to set up the best case scenario for her. They are watching out for her as if she were their own, and Paul and I are so grateful.
Paul always reminds me, "there is a God, and it's not me". He is soviergn in all things, and He has a plan that is perfect. We are awaiting that plan.

Well, we sure didn't make it far into 2009:( Lilah is back in the hospital. Her swallowing study on Monday revealed that she was aspirating, which is medicalese for 'getting food in her lungs'. This is a big deal...hard on her body, causing lung damage, and setting her up for infection. Praise the Lord for protecting her from getting pneumonia up until this point! So, we are at Children's doing some more pre-operative tests and awaiting surgery for a permenant gastric (G) tube.

We've done everything possible to avoid this outcome. It makes me so sad to think of my sweet baby with a hole in her belly and it removes the one thing that makes her like a "normal" baby--eating. And I don't think that hanging a bag of formula, on an IV pole, hooked to a pump is going to give me quite that 'warm and fuzzy bonding' thing that happens when you feed a baby. But, like so many other things, I'm going to have to get over it. It is comforting to feel certain that this is the right choice for Lilah....she's definately aspirating and it's no longer safe to feed her.

Please pray for us through this. The hospital is a hard place to be and I find myself fearful of the downward spiral that can happen as one procedure leads to another. Memories of coming in for an ear infection last Septmember and finding ourselves in the PICU with heart failure are still very fresh. Pray for God's protection over Lilah and for wisdom for her doctors and nurses. Also, please pray for Garrett. Our sweet boy has endured a lot of change and uncertainty in the last few months. I wish I could be two places at once, giving both of my babies 100%. Pray that Garrett would not feel anxious or fearful, but secure and important. We are still waiting for some test results, but it looks like the surgery will be Friday at 1pm. I will update when/if things change. Thank you, sweet friends, for loving us well.

Christmas Pictures

The kids and I just got back from 3 weeks at my parents!!! Paul was there the first 2 weeks and then left to go hunting (seriously, I'm not joking) and get back to a little thing called 'work'.  Anyway, we had a great, relaxing time and survived many minor/near emergencies....the packing and drive there, both kids had terrible colds, we thought G broke his foot (x-ray was clear), etc.  

We are back and in full swing...lots and lots of appointments for our little girl this month.  The best Christmas gift around here is that Miss Lilah seems to have blossomed a bit. That little angel is such a gift to our family. She seems much more alert and interactive, loves to be talked to and coos back, is very interested in her brother and her new toys, and like any girl, herself in the mirror:) She is eating pretty well and up to 12.6 lbs!  Most importantly, she just looks great to us.  When we got the news and diagnosis of her chromosome disorder a few months ago, it pretty much ripped the bottom out of the 'bag of hopes' that we had left for her.  We were bracing ourselves for a child that was unable to do or even enjoy anything in life.  But, she is smiling, giggling, loving her brother, reaching for toys, and has briefly held a few rattles.  We are thanking the Lord for his mercy in showing us these developments and allowing us to hope so much more for Lilah's life.   Many thanks to all of you who continue to intercede on her behalf.  I truly believe that your prayers have changed her life and I feel a special bond with anyone I know who prays for her....so bring your favors here, we owe you a few!   

We made it through 2008! That in itself is a miracle:) We have had quite the year and it makes me reflective....here is what I am learning:

-my family and dear friends love me more than I appreciated and far better than I deserve.

-I love, love, love my minivan.  It is the best car ever created and no amount of teasing from 'haters' can dampen my zeal! 

-even the worst things are better by the light of day than the dark of night.

-life is short and fragile, and full of indescribable joys and wrenching pain.  none of us deserves either, nor are we exempt. 

-now that I have two children, I understand how it is possible to love two such different little people equally.

--you absolutely never know what pain people carry with them.  I'm trying to be less judgmental of the rudness of random strangers...maybe their daughter was just diagnosed with an incurable heart defect, too.

-I love Motown and Oldies music (in addition to Country, which I already knew).  It makes me happy.

-I love my husband more than I knew possible and am so thankful we are on the same team:)

-God is faithful and his love is perfect and what He wants from me is trust.

-joy is a choice and it's "cutting off your nose despite your face" to choose anything else.

We had a blessed Christmas.  With each passing day, we are less fearful and enjoying both Garrett and Lilah more fully.  As always, we covet your prayers.  We have seen miracles, big and small, throughout the past year and we are looking forward to 2009.

Christmas is here! Christmas is here! I love it for all the obvious reasons, but Christmas seems even more special this year...we are with family, my littlest angel is so happy, and my biggest angel kind of "gets" it this year. As I've mentioned earlier, we been forced to "slow down" in lots of ways and it's made us focus on all the important parts of Christmas without getting caught up in the business.

One of the things we have been focused on is trying to teach Garrett about the reason for season.:) It's hard to know what he understands because he's at the stage where he just repeats what he's been told. But, I think he's getting it...Garrett made the nativity angel say "hallelujah" and then he said "I love you Jesus". I am clinging to this moment in the midst of the terrible twos:)

The fact that God sent his son, purposely, to die for me hits even closer to home this year. It is incomprehensible to me. As someone who is facing the possible mortality of my own child and begging for her life, I can't understand offering my son to pay the debt of the human race. It is a love beyond reason..a love that gives us a hope and purpose.

For God so loved the world, that he gave his one and only Son, that we may not perish but have everlasting life.
John 3:16

Thank you for reading this...I take it to mean that you love us and intercede on our behalf. I am soaking up the love this Christmas-feeling loved well by my husband, our children, our family, and our friends....feeling loved perfectly by the best present ever given..this night...thousands of years ago. Merry, Merry Christmas!