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!

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.

Halloween

<--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!!

It is one thing after another....we are (mostly) recovered from the cold, but have had a rough week with Lilah's monitor.  She had to wear a more sensitive heart monitor for 24 hours to see if she was having any irregular heart rhythms.  She was not--Praise the Lord!  I love her expression in the photo above. It says "seriously, are you kidding me with all this?"  I feel like she's wise beyond her weeks (it's good to be ahead on something!), like she's always looking at me with reassurance that she's okay.

Please keep praying for us...for healing for Lilah and for any other ways you can think of because we probably need that, too:)!

I knew we wouldn't be able to keep Lilah from getting sick forever...I just thought we might be able to make it a little longer than a month.  When Garrett came down with the sniffles last week, I was still optimistic.  We took all kinds of precautions, but when he started to look like a poster child for "virus" and I could practically see the germs floating in the air, I knew I was kidding myself.  Sure enough, she's sick:( So far, so good though-she's smiling, eating, and not running a fever.  It's always terrible to have a sick child, but Lilah's condition ups the ante quite a bit.  I'm a nervous wreck, of course, because a little cold is how it all started.  But, her doctor tells me that he thinks she's much stronger now than she was before her last cold and he thinks she'll be fine (but he wants to see us again tomorrow, a Sunday, anyway).  To add to my ulcer, she's lost weight again....ahhh! It really is one hurdle after another.  But, I remind myself that that is life, that God is good, and He is constant and faithful.  And then I go take a nap.

"May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit"

Romans 15:13

Bambi

This is my brother and his latest victim-a deer, no elk, no moose, (let me double check the email)....it's an antelope!  Isn't he cute? I mean my brother:) He lives in Steamboat Springs and is a teacher/coach by day and a hunter/gatherer (as Paul says) by all other hours of his life.  He is living the life of adventure out there in the beautiful wilderness (I'm using wilderness loosely).  And, I'm just kidding about victim-- there is no love lost between me and the animal kingdom:)  I just wish Jeff could come to my house and take care of my squirrels and the coyote that seems to be running wild in the middle of my neighborhood!

this is not his halloween costume:) note all elements of his 'getup'...my shoes, his elmo pj pants, a drool covered shirt b/c he hasn't been able to breath from his nose for a week, a bandana from his grandaddy's time in japan...all in all, he thinks he's hot stuff:) oh, and he's dancing like sumo wrestler to the duck's version of "if you're happy and you know it"

It's good to be two....most of the time:) Garrett is loving life these days. Sure, he is full of plenty of whining, temper tantrums, and fits.  He does his share of bossing, breaking, yelling, and messing....but, he is so fun!!! He's talking a ton ("do what I say", "good morning yaya* baby", "you strong momma").  He has the most beautiful laugh.  Sometimes it makes me laugh, often is makes me teary, but it always makes me smile.  With him, every day is an adventure, every experience something totally new.  We spent 20 minutes today studying an inch worm. He thought it was just the most interesting thing....and, it was pretty amazing.

Paul and I have been thinking, praying, trying to live in the moment these past 6 weeks. Not in the "let's go skydiving" sort of way, more the "focus on today", "be thankful now" sort of way. With all that Lilah's diagnosis brought with it (fear, stress, work, worry, etc), we've been forced, out of necessity, to do what's in front of us and take one day at a time.  This is a good place to be and we are thankful for the continued lesson.  

*Lilah's nickname:)

things have changed drastically around here...my mom left yesterday:( i'm sure you've all heard me say this a million times, but she really is a saint.  she has been here since the day we found out lilah was sick and my sweet dad has come every weekend.  they are the most incredibly selfless people i know and they have taught me how to love my children well.  and, just as important...my children love them!  they have more energy than i do, and do all kinds of fun things with garrett (zoo, greekfest, countless walks, fall festivals, etc).  garrett is just as depressed as i am...he keeps saying "where granna go?" and then answering his own question with "granna in indiana with papa". it's really sweet!  

Miss Lilah is doing great...she's gained 6oz!!! After spending an obscene amount of money on various bottles and nipples, she's now taking a bottle like a champ:)  We went to the neurologist this week and he was very happy that she hadn't had any more seizures.  He said that because all of her tests indicated normal brain structure, we had to assume her seizures were caused my an area of underdeveloped brain matter.  (this is great...best case scenario as far as seizures go)  He hopes that this will resolve itself and our goal is to try and phase out the anti-seizure meds in a year.

We also saw Lilah's pediatrician, love his soul.  He is always incredibly encouraging about her progress! She got the last of her immunizations and reminded me to tell everyone I know to

 get their flu shot:)

Daughter of the King

"How great is the love the Father has lavished on us, that we should be called children of God."

1 John 3:1

Lilah's baptism was such a sweet day.  We are so thankful to be able to dedicate her to the Lord with most of our family and friends there.  It was unbelievably special for us to commit to raising up this child God has given back to us...to love, honor, and know Him.  No pressure, right?!:)

She is doing fairly well.  Our big concerns right now are her reflux (which all the medicines have made much worse) and her weight gain (i.e. "lack of"), which is affected by the reflux. Please pray that a new reflux medicine is effective and that Lilah will learn to take a bottle (so that we can add extra calories with cereal and formula).

Happy Birthday Garrett!!

my sweet sorority sisters send Garrett this Thomas set--he loves it!

Garrett looking at some "extra" things from my dad 

My biggest baby turned 2 on Sunday!  I love this age... truly straddling the gap between baby and little boy.  He is just the most precious thing... beautiful, brilliant, funny, tenderhearted, and kind (mostly).  We love him fiercely and are so thankful to be his parents!
For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."

Jeremiah 29:11

"Miracle Baby"

Seriously....that's what she (Lilah's cardiologist) said at our appointment today.  Dr. Bremer said, "She looks perfect. She's a little miracle baby."  These are, without any doubt, the sweetest words I have ever heard!  And, she's right...her left ventricle is no longer dilated, her heart function is normal, her VSD (hole between ventricles) is smaller and may close on it's own, her ASD is not causing her any problems.  There is still the serious cardiomyopathy, but Dr. Bremer said that, with medication, her body is "clearly well compensating".   Obviously, prayer changes things:) We are truly overjoyed!

And, we are having this little miracle baby baptized, as planned, this Sunday at Redeemer at 11am....with gladdened hearts!

"Shout for joy to the LORD, all the earth. For the LORD is good and his love endures forever; 
 his faithfulness continues through all generations"

Psalm 100:1, 5

"Love bears all things, believes all things, hopes all things..."

1 Corinthians 13:7

I'm finally emerging from the fog enough to return some phone calls and everyone wants to know the same thing:  "how the heck do severe heart defects go undetected for almost 2 months?".  I asked myself and every doctor the same question.  Here's what I know...her heart checked out fine on ultrasound at 20 weeks (they must have just checked to see if she did in fact have a heart), she was checked by my o.b. at birth, many nurses, and at least 3 different pediatricians in the first few weeks of life.  She ate well and gained weight just fine.  

But, for all of you who are worrying that your child has some terrible, as yet unknown, diagnosis...I did have many concerns about Lilah.  She slept a lot, never cried, and was a very noisy breather.  I'm sure there are plenty of babies out there that fit that mold and are fine, but, looking back, I had a nagging feeling about it.  Of course, I brought all those up at doctor visits, but they aren't exactly huge red flags.  Hindsight is 20/20, but I know now that I was really concerned because I mentioned these things to everyone I knew.  But, I always explained them away (i.e., she's just really laid back) because, to me, she looked perfect.  The strange thing is that now, when I look at earlier pictures, she looks sick.

I am not really upset that so many doctors missed it....it gave me an irreplaceable gift.  I got to have 6 weeks to bond with my perfect daughter....to look into her eyes and think forward to cooking together, shopping trips, and a wedding, without the worry or the fear.  That time gave me the chance to fall so madly in love with this little package that whatever lies ahead is absolutely worth it!

Sunny Day

We are doing great...have finally gotten some rest, feel like Garrett's feeling more secure, and the adjustment is getting easier.  Lilah seems to be doing very well.  She is very alert and active and has given her fan club many smiles in the last few days.  The echo we had before we left the hospital showed "normal" left ventricular function, which is amazing!  Her doctors say now it's just a 'wait and see' game to see how the atrial and ventricular defects affect her and if her left ventricle will maintain function with her medications.  We feel like she is doing amazingly well.  Also, they have strongly cautioned  us against any germs (obviously), so we are pretty much quarantined:)

On a side note, Redeemer Church made this sweet announcement about collecting money for us. While we totally appreciate the spirit and generosity, it's not necessary.  What we do need more than anything is your continued commitment to pray for Lilah.  

Life Goes On...

I feel like it shouldn't, but it does.  There is still laundry, football games, celebrity gossip.  It seems weird to me b/c all I can think about is sweet Lilah.  But, I think we are doing an okay job getting back into the swing of life.  There are definitely moments of total sadness, but then I see Garrett and Lilah and remember that they need a mother who is joyful.  It is impossible to look into the face of a child and not feel hope.  See what I mean....:)

Home!!

Well, we survived our first 24 hours home.  It has been overwhelming in both good and bad ways. The good is that she is bettter,  our family is together, my mom is here helping us, I got to sleep in a bed! Lilah is doing well--she automatically just seems better at home, out of that sad hospital crib, and unattached to monitors (most of the time).  The bad is just the adjustment to this new way of life for us...the medications, the monitor, the worry, etc.  Paul has this really wise, old friend (old as in "length of friendship" not years) who has always given him great advice.  His words today, "inch by inch is a cinch, yard by yard gets hard".  Super corny, but so true!  And, exactly where we are, or are trying to be...taking it one day at a time.

I want to thank all of you who have emailed, called, sent cards, gifts, flowers, cleaned my house, visited us in the hospital, brought/sent us food.  We are so humbled by your thoughtfulness.  I am going to do my best to thank each of you personally, but in case it's  2 years until I get to it or you sent me a ham and I thank you for flowers:), I want you to know it has all been so very appreciated.

Going Home

Thy mercy, my God is the theme of my song;
The joy of my heart, and the boast of my tongue
thy free grace alone from the first to the last
has won my affection and bound my soul fast
Without thy sweet mercy, I could not live here...
sin would reduce to utter despair
but through thy free goodness my spirts revived
and He who first made me, still keeps me alive



I have listened to this song a thousand times in the last 10 days...begging for His goodness and mercy. The Lord has heard our cries and answered our prayers. Lilah sleeps peacefully as I write. She is beautiful and her life is more precious and fragile than I could have ever imagined. We have been dealt some terrible news over the course of this nightmare, and we are brokenhearted. We have wept until the tears dried up and wept again. My darkest fears for my children never came close to this. I could write forever, using every synonym for pain and sadness....and yet, there is incredible hope.
God has filled our hearts with promises from His word and we claim those for Lilah. We do not know what the future holds medically. But we do know that she is a child of God, He loves her deeply (far beyond we ever could), and He holds her tightly in the palm of His hand. Lilah is a good and perfect gift and we are honored to be chosen as her parents. We know the Lord has plans for her life, however long it is, and has already used such a tiny baby to change hearts.
There will absolutely never be enough words to thank every single one of you for your commitment to pray for our daughter. Lilah's life, and our life, has been changed by it's power. We have experienced His love through you, the Body of Christ, in such real, tangible ways. We have felt His spirit in the room with us during even the darkest hours. God has taught us that He is good, loving, and full of mercy. And, He is continuing to teach us about trusting Him and finding peace.



Disolved by thy goodness I fall to the ground
and weep for the praise of the mercy I've found

MRI Negative

 Paul and Gina are happy to report that Lilah's MRI this morning was negative.  This means that her brain is structurally normal; obviously, they are so very thankful.  Lilah was unable to be sedated for the MRI because of her heart, but Gina planned her feeding and medicines perfectly and she did not move a muscle through the test.  So, this means that they do not know exactly what is causing the seizures ...but, it's better for all the tests to be normal and not know the exact cause than for there to be something wrong.  Lilah will continue taking seizure medication at home for at least the next year.  They have added another seizure medicine and Lilah has not had a seizure since 10p last night.  They are going to take her central line out today and as long as the seizures stay under control, they may be able to go home tomorrow evening or Wednesday.  They saw another Cardiologist today and though the long term prognosis is the same, and always hard to hear, he felt like she was "holding her own" for now.  

They say every day how they are "so overwhelmed" with how many people are praying for them.  They are confident the Lord has heard them and they want to express "what a gift" your prayers have been to them.  Gina was particularly thankful because she felt like Lilah felt better today.  She said that when Lilah wakes up on her own, she is much more engaged in her environment, seems interested in a toy for the first time, is moving her head better, and is even fussing some...which Gina is thrilled about.  She is glad to know that she cares enough about something and has the energy to fuss.  Lilah has even given up a few smiles today.  

They are beginning to prepare for the transition home and the long road ahead of them.  They are very thankful that Gina's mom is going to stay with them for a while, and they will be so glad to get back to Garrett.  Though they are feeling somewhat nervous about taking Lilah home, they are more encouraged today...just feeling more ready themselves and feeling that she is more ready.  Will continue to update as things move forward.   

Agony and Assurance

The Neurologist came this morning and they are sure that Lilah is having seizures.  She underwent a 24 EEG with a video camera monitoring her yesterday so they could "prove" that the events were seizures.  They were able to capture several "events" while she was being monitored and recorded, this information gave the Neurologist proof that her events were indeed seizures. They have now begun a medication that they hope will bring the seizures to a halt.  Her CAT scan was normal and there was one small area on the EEG that he wanted to look at closer.  So, Lilah will have an MRI Monday to further evaluate.  The Neurologist couldn't speculate on what potentially could be the cause of the seizures and said he hoped not to find anything.  They are hoping the seizures stop, it is hard for anyone to rest when they are fearful that she may have another seizure.  Even though the doctors say that the seizures don't "hurt" Lilah, it is hard for Paul and Gina to think of her going through them alone.  So, they kind of feel a sense of having to keep watch round the clock.  This is tiresome for all involved.    

 

Obviously, they will be in the hospital through the weekend given that the MRI is scheduled for Monday.  Lilah's mom and dad are tired.  The emotions through all of this have been exhausting.  Paul said they were reading a book this morning that a good friend of theirs had given them about Job.  It was saying how Job felt he had been covered in darkness, but had not been failed.  This is where they are...they feel fully fearful and at the same time fully assured.  Trying to balance the intensity of both of these feelings is difficult, to say the least.  They say they feel like there is not really anything they can "do" for Lilah...they can be there for her, love her and comfort her, but they feel a sense of "powerlessness"...and in creeps the fear.  At the same time, they are continually comforted by the Lord and have an "unmistakable assurance" in Him.  They continue to say repeatedly  how "overwhelmed" they are with the support and how "completely  covered" they feel in prayer.  Paul said this verse keeps coming to his mind...

"...if we are faithless, he will remain faithful, for he cannot disown himself." 2 Timothy 2:13  He says they are also hanging on to these two verses when in agony over their affliction.  Psalm 143:1 says "Oh Lord, hear my prayer, listen to my cry for mercy; in your faithfulness and righteousness come to my relief"  and verse 8 says, "Let the morning bring me word of your unfailing love, for I have put my trust in you.  Show me the way I should go, for to you I lift up my soul."  He said these two verses are kind of from different ends of the spectrum, the first is indicative of how they feel in their agony and the second of how they hope that the morning will bring assurance.  This is where they are today.  

Lilah's pediatrician came this afternoon and he thought she looked "good" today, they are always thankful for a positive perspective.  Gina's dad was there "keeping watch" this afternoon while she was resting and Paul was headed home to rest.  Will look to post again Monday after the MRI.  

Just let me sleep

A picture of Lilah taken today by her Aunt Liz.   

Test Results

The EMG was negative.  Thankfully also, it was not too bad for Lilah.  They could tell it hurt her...she got wide-eyed during the first needle stick and grimaced at times, but was actually able to sleep on and off through some of it.  Obviously, they are glad this test was negative.  

The other new development is that Lilah began having seizures in the night.  Lilah had a few events yesterday that in retrospect may have been small seizures, but she had two full blown seizures last night.  The first around 4am and the second an hour or so later.  She has already had an ultrasound of her brain to evaluate due to the seizures and her brain is normal.  She has also had an EEG to evaluate, they do not have the results of this yet, but she did not have any seizure activity during the test.  They have also done bloodwork to try to find the cause of the seizures and it was all normal; furthermore,  they do not feel that it is the cause of any of her medications.  

After these 2 big seizures, it was hard for Gina to sleep...she just wants to sit and "monitor" her.  Will post more as things develop.  

 

**Update - The Neurologist just saw Lilah and said that he is not "convinced" that what she had was a seizure.  It could have potentially been some type of "convulsion".  Since the EEG did not show any seizure activity, he feels the need to "prove" that it was a seizure.  So, Lilah will have a CAT scan to evaluate further.  They do not know for sure, but can't imagine they will leave the hospital today.  They say they feel completely covered in prayer and continue to say thank you.  

Good days and Bad days...

"When you pass through the waters, I will be with you; and when you pass through the rivers, they will not sweep over you.  When you walk through the fire, you will not be burned; the flames will not set you ablaze.  For I am the LORD, your God, the Holy One of Israel, your Savior..."  Isaiah 43:2-3

There is not much change to report today.  Lilah did have a Pulmonologist see her this morning.  He said things were ok and felt that the current Dr's were managing everything fine.  Though there is not any "bad news" per se,  Lilah does not seem as well as she did yesterday.  Her color is not as good, her heart rate has been increased intermittently and she has been sweaty at times.  Paul says they can look at her eyes and just tell she is "sick" today.  She is still "stable" and though she did not have any tests today (x-ray or echo), her Dr's do not anticipate that any of them would be much different than yesterday.  This is just a "bad day."  In light of this, they may decide to keep her at the hospital longer.  She has been off of the oxygen for a while and is doing ok without it.  

Paul kept saying that they love Lilah so much and that they feel so blessed to have her.  Paul said he knows that Lilah will have good days and bad days...they are just coming to an awareness of what she has...and they are sad.  He said that he and Gina have had different emotions at different times...that one will be up when the other is down and vice versa.  They have been glad to carry one another through their "down" days.  Gina did get to see Garrett yesterday and was thankful.  They remain encouraged by scripture and say that they are constantly reading the words everyone is sending and reading them to Lilah as well.  Paul kept saying how kind everyone has been from his work...  that they have really given him the freedom to just take care of Lilah.  He said this has really taken a burden off of him.  Finally, Lilah's EMG is tomorrow from 8-9am.  They will be able to be with her and are glad.  They again ask for your prayers for that test specifically, as well as the results.   Will update as we hear news.

Good News

"Because of the Lord's great love we are not consumed, for his compassions never fail. They are new every morning; great is your faithfulness." Lamentations 3:22-23

Good news to report, Lilah's chest x-ray and echo were much improved this morning. Her lungs look clearer and her heart is not as large. The echo showed that her heart is stronger and pumping "more efficiently" than when this began. The Cardiologist was very pleased and excited to deliver the good news. They are planning on moving Lilah out of the ICU today to a regular room and are working on weaning her off the oxygen.

The plan, at this point, is still to go home Friday after the EMG. Lilah will wear a heart monitor at home that will record her heart rhythms. She has not had any irregular rhythms thus far, and they are thankful for that. Since Lilah has responded to the treatment so well, the cardiologist's plan is to treat her condition at home with medicines for now. She was able to take all her medicines by mouth last night (as opposed to IV).

They are weary today. Paul said this good news has brought with it somewhat of a sense of relief... and for the first time, they feel like they can "let their guard down" a bit. He went on to say, that as they are able to begin to relax...they are exhausted. Gina said yesterday that she couldn't decide if time was moving fast or slow. She has not left the hospital yet, but was going to try to see Garrett today and was excited about that. Paul continues to speak of how the Lord had prepared them for this and he wanted to share something they had read in the weeks before Lilah's diagnosis. It is August 5th's morning devotional from Spurgeon's Morning and Evening. They are both constantly saying "thank you" for the love, concern, prayers, scripture, etc...they feel the support. Will continue to update.

Here are a few picts Paul sent last night...

Tuesday

"I wait for the LORD, my soul waits, and in his word I put my hope. My soul waits for the Lord more than watchmen wait for the morning, more than watchmen wait for the morning. O Israel, put your hope in the LORD, for with the LORD is unfailing love and with him is full redemption."
Psalm 130:5-7

Not much change to report today. Lilah continues to improve and respond to the medicines. The ICU Dr. that checked them in saw them this morning and said he was very surprised at how well she is doing...really better than he ever imagined. He truly seemed shocked and said she has done the very best he could have hoped for. They were all quite thankful to her this. Lilah is nursing great now, another huge praise. There are no tests scheduled for today, chest x-ray and echo will be done tomorrow and EMG (electromyography) on Friday. They are asking that we all pray specifically that the EMG is "negative" and that this is not any sort of dystrophy (degeneration of muscles) or myopathy (muscle disease where the muscle fibers do not function resulting in muscular weakness). Her condition will be more complicated if this is the case, rather than just isolated cardiac defects. If the EMG is positive, they will dig deeper to find out more. Again, this test will be hard for Lilah, so pray that the Lord will comfort her throughout it.

A more exact term for her heart defect that is most concerning is "dilated cardiomyopathy with left ventricular noncompaction." Again, this in in addition to the ASD and VSD. Home health is coming to their house tomorrow to start to get things in place for Lilah to come home...monitors, medicines, etc. They are looking toward letting them go home Friday afternoon, this could certainly change...but, is somewhat of the goal for now. They will be glad to be home, but a bit apprehensive as well. They feel very "safe" at the hospital, and just want to be able to care for her well at home.

Paul and Gina continue to remain steadfast in the Lord, they are "believing" and praying that the Lord will "help their unbelief" Mark 9:24. They say they are doing "leaps and bounds better than any human could do on his own, and that truly they have been given grace they did not have before." They are continually giving Lilah back to the Lord, knowing full well that she is His...as are they. They are encouraged that at only 7 weeks, God has seen fit to use Lilah in such a mighty way. The solidity of their faith through this is amazing. They said they have always known that Garrett is such a sweet and caring little boy, and though this is certainly not what they had in mind for him as a baby sister, they know that he will love her fully, he is the perfect big brother for Lilah, and this is exactly what the Lord has for Garrett. Gina said, "I am not saying that this is what we want...I would love to give it back, but we feel prepared as a family." Oh sweet Gina.

A group of girls met last night to pray for them. This was greatly appreciated and felt by them. They are still feeling very tangibly loved and interceded for. They again say thank you for all the comments, cards, calls, etc...they are getting them all and it is very uplifting. Will continue to post as things change.

Monday Update

"Lift your eyes and look to the heavens: Who created all these? He who brings out the starry host one by one, and calls them each by name. Because of his great power and mighty strength, not one of them is missing. Why do you say, O Jacob, and complain, O Israel, "My way is hidden from the Lord; my cause is disregarded by my God"? Do you not know? Have you not heard? The Lord is the everlasting God, the Creator of the ends of the earth. He will not grow tired or weary, and his understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the Lord will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint."
Isaiah 40:26-31

Paul and Gina wanted me to start with these verses because everything they believe begins with this promise. With that said, Lilah is a little better this morning. They have talked with the cardiologist again and are a bit more encouraged. Lilah's chest xray and echo looked better this morning, her lungs were clearer and her heart did not look as enlarged. This means that she is responding to the medicines they are giving her for the heart failure. They talked to the cardiologist a long time about what these defects mean for Lilah in the long run--specifically the noncompacted left ventricular cardiomyopathy. How can she live with them? Will she have limitations or not? Will her cardiac output be adequate or get worse as she grows? Basically, the lining of her left ventricle is very uneven, causing the beating not to be uniform. Paul said it is too early to know the answers to these questiions at this point. It is kind of "wait and see" for now, however it is good that Lilah's body is responding to the medications so positively.

The neurologist came also. He thinks that Lilah looks "okay." He is maybe a bit concerned about the weakness of her cry, but it doesn't necessarily mean anything in and of itself. All of her cranial nerves are intact and she tracks well. He would like to do an EMG. This is a test that will evaluate her muscles and give them a guide as to what to look for in genetic testing. It could potentially tell them if Lilah's illness falls under any type of "dystrophy." This test is painful and they cannot sedate Lilah because they will need her to respond. Paul and Gina have asked for this maybe to be done on Thursday, just to give her a break for a few days. They would like the information that this test would provide to guide the physicians in their care for Lilah, but it is hard to think about knowingly putting her through this pain. All in all, they were glad that the neurologist did not identify any definite abnormalities and will be awaiting further testing in this area.
As far as endocrinology goes, things seem to be fine also. Lilah's PKU at birth was normal and they have not detected any other metabolic disorders from the blood drawn at the hospital. So they have essentially ruled out abnormalities in this area.

They have not been able to hold Lilah for the past 24 hours. This morning they got to hold her and Gina was nursing her while we talked. She was thankful for this. Paul said they talked about how they felt that God, in His sovereignty, had prepared them for this in the past few weeks. They had both been reading about whether God is sovereign only in good things or in all things. They both know that God is sovereign over all things, good and bad. They know that He is sovereign over Lilah and her sickness. They are comforted in this, and even though they don't understand, they believe that God is good. They were definitely thankful this morning for better news, and it was so great to just hold her and feed her. Lilah seems to feel better, they feel like she knows they are there, and they are doing as well as they could be doing. They feel very tangibly loved by the Lord...they are surrounded by believers at the hospital. The staff at the hospital has been great...so enouraging and hopeful as they walk alongside Paul and Gina through this...this has been such a huge blessing. Gina said she can't imagine how it would be to be in a dark, hopeless environment. The people they are surrounded by at Children's know miracles happen and are a light through this dark time.

They wanted to thank everyone for all the calls, texts, emails, and gifts. They are overwhelmed by the support and feel lifted up in prayer. At this point, the goal is to see Lilah improve enough to be able to take her medications orally and be able to go home and see where things go from there. We'll continue to update as we know more.

Pray for Lilah

This is Elizabeth Myatt posting...a good friend of Paul and Gina's.  They wanted to let all of you know what's going on with them.  Lilah is in the ICU at Children's Hospital with what started last week as a cold and turned into a respiratory infection requiring IV antibiotics.  After they were admitted to the hospital yesterday, they did a chest x-ray where it was found that Lilah's heart was enlarged.  They then did an echo (ultrasound of the heart) yesterday evening and Lilah has been diagnosed with several cardiac defects.  She has a ventricular septal defect (VSD - a hole between the ventricles), an atrial septal defect (ASD - a hole between the atriums) and Left Ventricular Non-Compaction (where the heart muscle is not "compact" and has many holes in it). The last defect is the most serious.  Lilah is in congestive heart failure because of these defects and they are giving her medicines to manage the heart failure.  They are going to start a central line (IV right to her heart) tonight, so they will be able to give her medicines and draw blood easily.  They have had a very hard time starting IV's and drawing blood since they have been there, and it has been hard for Paul and Gina to watch Lilah be "poked" so many times, so hopefully this will be helpful. 

Also, the Doctors feel like that there may be a "bigger picture" to all of this.  They are consulting with Neurology and Endocrinology to run more tests and see what else may be going on.  As far as treatment, right now they are working to stabilize her heart with medication and continue to run tests for more information.  

When I talked to Gina, she said, "I just wanted you to know that I am ok," oddly enough...I believe her.  She had a strength in her voice that a determined mother has.  She said that of course, they are scared and she is working to not feel hopeless already. I think this has all just come as such a shock.  She said that it is hard to not "roll the tape forward" and wonder what the future will be for her, Lilah, Paul and Garrett.  She said also, that she is so thankful for Lilah and who she is, and that she knows that God is good.  Finally, she said she knows that Lilah is God's child first, but of course this is not what she had in mind for her.  

They are able to stay with Lilah in the ICU and are thankful for that.  Gina's mom got into town this afternoon and of course Paul's family is there.  They are all taking care of Garrett.  If you would like to visit, you can call Paul first and see if it's a good time. (If you do not have his number, leave your e-mail address in a comment and I will send it to you.) You will not be able to see Lilah since she is in the ICU, but you can stop by the waiting room and visit with Paul, Gina and the family.  They will be honest if they are busy and it is not a good time to visit, but the few visitors that they have had have been encouraging...it's always good to see a friendly face.  Gina told me several times that she felt sorry for people, because she knew no one knew what to say and she didn't either.  It's not about having the perfect words to say to them, I think just the physical support of seeing people they love will really lift their spirits.  I think it will also be very encouraging if you leave them comments on here. 

They are going to send updates so I can post and keep everyone updated until they can take it over.  I will let you all know of things as soon as I know.  Please pray for Lilah and her sweet family.  

 

Updates

this is the hot toy right now....the duck sings "if you're happy and you know it". garrett is dancing with his constant companion "monk".

lilah is getting bigger...smiling, getting rolls of chub, looking at toys, and fighting through her first cold:(

garrett is also getting bigger...talking nonstop! he is starting to seem like such a little boy instead of a baby.  we are pretty sure he's brilliant:)

we spent last week at my parents...very relaxing for us (maybe not so much for my folks)!

"School"

here are some pics of the first day of mothers day out.  this was the best i could do:) i tried to get garrett to hold his backpack, but b/c paul wore it to demonstrate he says its "dadda's paapaa".  we have had a few tears, but overall i think he likes it.  it is great for me to have a few hours to do some chores (grocery, cleaning) and eventually maybe some fun things:) and , it's really good for garrett to get out of the house and play with some other kids.  i love to hear new things come out of his mouth....other than a few things he learns from my parents, most everything out of his mouth, until this point, is something i (or paul) taught him.  it's sweet to hear some (very broken) recount of his time there and try to piece together what they must have done.

he's very timid in new places and with new people.  i am so proud of him for being able to do this that you would have thought he got into Harvard:)  just the beginning....

TO school shopping...

we found ourselves in Gap kids yesterday during a spontaneous trip to the mall in attempt to escape the heat.  our little garrett, it turns out, is a big fan.  he chose many shirts and shoes and jeans and even tried them on in the dressing room.  i will never forget seeing him come out with his baggy jeans, trendy t, and his hands in his pockets. i kid you not, he was strutting! he gets it from paul:)

we decided to make a day of it and get him new shoes.  i needed paul's help, as i had already taken him to two shoe stores without luck.  turns out he is not a fan of the foot measurer or the try on stockings.  we ended up with a trusty pair of new balance tennis shoes in a size 7.5 EXTRA wide....Paul said they looked like squares.  now i laugh every time i look at his feet...they are thick:)

Cousins...

...Garrett and Lilah have a lot of them.  L and Maggie are the newest additions to the clan.  Maggie was born to Paul's brother David and wife AnnRose just 5 days before L.  I did not have any cousins my age and I am really thankful that my kids will get to grow up with such a big extended family.  It is crazy!!! (think many 2 year olds running around hitting a backyardagains pinata at a recent bday party).  But, after Paul and I get in the car, the headache fades, and we see the huge smile on G's face....we have visions of what it will be like for the years to come for these cousins--wonderful (i think)!   Our prayer is that they will all (or at least more of them) will end up in Knoxville:)

Growing Up...

it must be bringing home a tiny baby that makes you realize how big your first baby is now:) here are a few pics of him "reading".  and here are a few reasons i think he's growing up....he asks questions, he makes sentences, his smell is starting to change from baby to little (sweaty) boy, he remembers everything (except things like not to hit or scream:), he's tells me how to do things when we play, and he understands all sorts of things that seem way beyond an almost-2-year-old.  it seems like paul and i say this at every milestone....but, this really is my favorite age.  he is such a joy!

1 Month....

I cannot believe my little girl is 4 weeks old! It has flown by, but we absolutely cannot imagine our family without this sweet baby.  She is just precious, but still very sleepy so we kind of feel like we don't know her very well yet.  Here is what I do know...she's very laid back, she's a really noisy person (not crying or even fussing much, but lots of snorts, loud breathing, etc.), she loves her paci, and she does a great job of tolerating her brother's crazy love of her (crazy as in loud, in her face, and totally unpredictable), she's not crazy about baths or cold wipes, and she loves her head rubbed! Here are a few photo updates:

Uncle Jeff

My brother has been visiting us the last few days with my mom and dad.  He lives the life of a modified ski bum (as in, lives in Steamboat Springs, skis every possible moment, but has an actual job as a high school teacher).  We've had a great time and feel so fortunate that he would take a few days out of his vacation to spend with my wild children. He survived very well, and they loved him.  (I am still laughing at him asking me if Lilah ate twice during the day and once at night??:).  

I Will Survive....

grandaddy...

we had 20 pics of Garrett's first bath...this is the only (bad) one of hers
Lilah kind of looks resigned to her fate as little sister, doesn't she??  i do think this was a kiss--at least there were no teeth marks.

I keep singing that song in my head:) Really, life with 2 is going much better than I anticipated. Still--this has been the longest week of my life. Nothing bad, I think it's just learning to get into some sort of routine.  So we haven't figured that out, but I have learned a lot of things this week....about me, my kids, parenting two children, etc.  Here are a few from the top....

1.  having 1 baby is easy- why did i not realize this at the time??? (it's like how everyone tells you you have so much free time and freedom in college and to enjoy it, but you think you are SO busy)

2.  babies are easy, 2 year olds are hard    

3.  there are not enough hours in the day- i suspected this to be true before, but i am sure now

4.  it's always something --the few brain cells i have left are always devoted to the current mini crisis....like whose butt has a nasty rash, why will garrett only eat cheese circles,  will he bite/hit/throw cars at Lilah???

5.  having children is the ultimate gift --at the end of the long day, i am so thankful that God has given me these beautiful babies.  they are all things precious and innocent and good....and i can't wait for another day with them:)

Family of Five

The 5th being my mom, who has been here helping us for 2 weeks...bless her!!!  So far we are doing great. I dare say that Lilah is fairly laid back and we are hoping it continues:) Garrett is adjusting well and we are sleeping a decent amount.  The big news around here (besides baby sister) is that GARRETT got a HAIRCUT!! The pictures of the experience are on my mom's camera, so I'll post them later, but here is the final product...

And here is pretty much what Lilah has been up to (besides eating)....