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.  

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!