Half Birthday

 eating peaches

Sweet baby is 6 months old!  The actual date passed when we were in the hospital, but I wasn't feeling like chronicling her milestones at that point.  Like so much of this journey, we are living 'flipsides'....weary but encouraged, saddened but hopeful. The Lord has already done more than we knew to ask or thought to imagine for Lilah, for our marriage and our family, and for so many who walk this with us.  

The day of her diagnosis, I remember crying that "I will never know her". What I meant was; I thought I would never know who she was intended to be.  The beauty of this looking back is:  this is exactly who she was intended to be on Earth and... I do know her! She has a personality, and it's pure, and sweet, and wonderfully made.

At 6 months, she loves people, her 'lovey', her paci, and (most recently) tasting graham crackers.  She is starting to really appreciate lights, toys, and music.  She has a healthy fear of her brother:)  She loves to hold hands! She lights up with any attention, but does not demand it. She HATES having her oxygen put in her nose and she really dislikes having shirts pulled over her head.  Generally, she is most incredibly sweet spirited, gentle, and the embodiment of innocence. 

Milestones will always be tough for me.  I cannot help but to compare her to the 'typical' in my head.  And the older she gets, the wider the gap.  I want so badly for her to be able to engage in her environment...to reach, roll, sit, and crawl.  I want to be able to carry her on my hip as I did her brother.  I want to worry about how new teeth will hurt her and if I am giving her 'new foods' in order.  I have the most incredible ache in my heart to hear her voice.  But, we also rejoice.  Her life has been spared.  We have been given this gift.  Lilah continues to delight and surprise.  Her body has proven to be stronger than once thought and she is engaged and attentive far beyond expectations.

Cheers to 6 months!  Hard, yes.  But, so SO worth it.

Garrett is obsessed with CARS.  Seriously, it is bordering on pathological.  He woke up this morning asking for "Tire-Eye McQueen"  (a CARS character) and it spiraled out of control from there...

  The background is that although Garrett got several very nice Christmas presents, the 3 die-cast cars Paul gave him were SO his favorite.  He goes everywhere clutching them in his fat little hands:).  He will hardly put them down to let me put his hands through a shirt, he takes them in the bath, and has mastered holding his cup sandwiched between two cars.  Paul is so proud, but I'm ready to ring his neck.  Here's why:  Garrett is using them as psychological warfare against me.  I do have a flair for the dramatic, but I'm not even exaggerating here...he hides them, or loses them, or eats them--I don't know.  There is a favorite every few days and that is always the one that winds up missing.  Nothing will do until we find that one! The kicker is...we usually can't find it.  The hours spent searching are eating up what little sanity I have left.

Then, like the "we said we'd never" kind of parents we are, we go out and buy him a replacement.  But, because Disney has marketing ninjas, every time this happens, the store is sold out of  "green car", "Ramone", or "Doc" and only has a more obscure version like "Bug Teeth McQueen".  You kind of have to have seen CARS, but basically Disney has made dressed up Cars that coincide with scenes from the movie.  So, Garrett ends up with "Tumbleweed McQueen" as a new favorite, until he looses that one and the cycle repeats.

This is turning into a long story, but I'm getting somewhere.  Today I was not overflowing with motherly patience and snapped when he asked me for the 600th time, in a terribly whiney 2 year old voice, for "Tire-Eye McQueen".  I felt terrible, thought he was going to cry, and then he said "I want Tire-Eye McQueen Mommy".  AHH!  So, I left Paul (who was very busy with work) with Lilah and Garrett and I raced out the door to drop some cash on a replacement.  We arrive at Toys R Us and he is beaming....so excited to be on an adventure with Mommy to get a new Tire-Eye McQueen (which they did not have, of course).  We load up several other cars in our basket and head to check out, with Garrett saying "ooh, thank you mommy" and .....I DON'T HAVE MY WALLET!!  I am frozen at the register in total panic about how I'm going to explain this to him, but he took it very well--until I strapped him in the car seat (think he thought my wallet was in the car...as this too has happened).  He then threw the most impressive fit in history (his anyway).  Snot-blowing, tongue-curled, head-banging sort of fit...all the way home and all the way back to the store.

We get the new cars, and peace in the valley is restored.  And as I was putting on his PJs he said, "I want Tire-Eye McQueen, Mommy."  :)

Happy Birthday Gina!

It's amateur blogger Paul here.

Well, we are extremely thankful for several reasons.  After 11 days Lilah finally made it home.  She also made it home in time for Gina's birthday tomorrow!  We finally took some pictures of our sweet girl.  They were taken yesterday at Children's Hospital and they were the first real smiles that we have seen from her in quite a while.  

I can't tell you how much how Lilah's smile can completely change my day, but hers always does mine.  We feel so proud of her.  She has the sweetest and most gentle spirit that I have ever known.  She is also uniquely content just to be with us. This little girl has changed my life in so many ways and I could never even begin to articulate them.  After 36 years of life, Lilah has taught me how to live.

I also want to say a few things about my beautiful wife Gina on her 31st Birthday.  I think that maybe this is a 21st century way of professing my love for her so here goes.  This is what I know.  I loved Gina before Lilah was diagnosed with her condition(s) but I have come to love her more deeply than I ever knew were possible.  She is not only the love of my life, but she has become my best friend.

I have always felt that when something happens like what happened to Lilah, that the mom bears the heaviest burden.  Its not that the pain is necessarily any less for a dad, but I feel that for a mom, it's different.  Gina has carried and still carries the heaviest of burdens with the ever present list of uncertainties that Lilah faces every day.  Simply put, Lilah is going to have to beat the odds.  

Nevertheless, Gina continues to love.  She continues to care for Lilah and Garrett with her whole heart and she continues to be an amazing wife to me.  She also chooses the most difficult task of feeling the full weight of the good and the bad.  It's much easier to run from things like this, or to medicate them in a million different ways, but she does the hard thing and the right thing.  She feels the pain and she waits for the Lord to pick her up.  I have learned so much from her in this way.

The hope in all of this is that God has proved faithful to her and to us in this storm.  God's grace is real and He is an ever present help in trouble as it says in Psalms.  We have literally felt God's presence in some of the darkest days and God has ministered to us through the gift of your prayers.  

Happy Birthday Gina.  I love you!

Paul

Home !!

We made it:)  Lilah is great and seems glad to be home.  I'm in the throws of getting medicines filled and supplies organized.  I will update more when the chaos subsides....

The update is that we are still in the hospital with Lilah, but she was moved from ICU to a regular room this afternoon.  Her fever (which had been very high for days) is gone and she is starting to get some Pedialyte through her new feeding tube.  She came through both the scheduled and the "redo" surgery very, very well and was able to be take off the ventilator more quickly than we had even hoped.  Even her doctors seemed pleasantly surprised at her strength.  She will start to get formula through her feeding tube tomorrow, and as those tolerated, her IV nutrition can be stopped and the huge central line in her neck can be removed.  They are closely watching her lungs and her blood counts....and we are hoping to be home this weekend?!

We are very thankful that it has gone well (for the most part), but very weary of long days in the hospital, being separated from each other, and just the continuing enormity of our situation. We've spent 1/4 of the last 4 months at Children's Hospital and our house looks like the ICU.  Home health came today to teach me how to use and care for her feeding pump and tube.  The very hardest days for me are always when we get new medical equipment and then bring her home from the hospital.  It's a mix of total exhaustion and sheer panic, as in "how in the @#$* am I going to be able to do all this?"  I know other families do it, but don't know how.  I can't hardly imagine that things will ever level off to normal, and the honest truth is I don't want any of this to be normal for us.

We have come to the conclusion that the whole 'God does not give us more than we can handle' is not applicable here.  I have so long ago passed the point of what I can handle, that I can't even remember where it was.  Clearly, the Lord has given us far more than we can manage alone--so that we will rely on Him.  Thankfully, He continues to sustain us through each day.  

I keep forgetting my camera, but Lilah looks well-pale and with 6 million wires/bandages (actually, 15), but good considering all she's been through.  Despite valiant attempts by all her caregivers, she is not giving up any smiles yet!  Thanks to her Dad's persistent insistence :), her pain is well managed and she is resting peacefully....like an angel.

Lilah back in surgery

This is Elizabeth Myatt, friend of the Burches.  They wanted to let you all know that Lilah has had to go back to surgery this morning. Her G-tube is was not working properly and the surgeon tried to change it out in Radiology but was unable, so they have had to take her back to surgery to fix it.  I just heard from Gina and Lilah is out and doing well, they are waiting to see her.  Lilah also has a fever that they are concerned about and is so hungry, she has not been able to eat since yesterday morning.  Please pray that she "wakes up" well from the anesthesia and is able to come off the ventilator quickly. She did great after surgery yesterday, so they are hoping for the same today.  Will let you know of any developments, as always...Paul and Gina so appreciate your prayers on behalf of their daughter.