Good Night Lily Belle

April 7th, 2013

     Lily Belle Litchford, gifted to us on March 27th, 2013 at 6:40pm, passed into the loving arms of Jesus today, April 7th, 2013 at 6:00pm.  We give thanks to our Heavenly Father for His mercy on Lily Belle, His grace on us, and for His peace which passeth all understanding.  Her mother and I, as well as so many others, will miss her so very deeply until that day when we will meet her again in glory.  Our pain is far to intense right now for words. I simply don't have it in me to write much for now.  I only want to say that we feel your prayers, and we so very much appreciate everyone's kind words and well wishes.  We ask only that everyone  please continue to petition The Lord on our behalf for comfort, strength, guidance, and peace.  We acknowledge everyone's love for our daughter, and count it a privilege to have had so many care so much for Lily.  Tonight she is broken no more.  She is whole, and in the care of our Savior.  She only now is fully aware, and fully understands our love for her, and Christ's love for all.  The time has now come for us to mourn.  Please understand Lily's mother and I will need time to grieve.  I may not post for a while, until I find the right words, but I want all to know that we have been deeply affected by those who have read this blog and have responded in prayer and kind words.  Good night my precious Lily Belle.  Know that we love you, and will continue to love you, forever and ever.  Until we meet again on that day.

Love,
-Brian (Lily Belle's Dad)

Lily the Ladybug

April 5th, 2013. I promised to post some pics.  So here are a couple of Lily Belle in her ladybug jams.  After another apnic episode last night, she is having a decent day today.  Thank you for your prayers. Please keep them coming!

Lily and Her Mother

April 4th, 2013


     Three days, that is what God gave us.  Three really good days with no breathing episodes and perceived progress with Lily's feeding.  Three days of much needed emotional reprieve and rest while Lily not only did well, but seemed to be improving.  We so desperately needed it, and God provided it.  It is the result of all of your prayers, and proof that God is listening and responding.  It is also, in part, why I haven't blogged in the last couple days.  I didn't mean to keep everyone out of the loop, but frankly I have been tired, and not feeling quite as deeply emotional for the last couple days.  It is important to me to keep these posts pure, transparent, and honest.  Therefore I don't ever want to force it.  Going forward, from time to time, I may just post a few short updates here and there, or maybe a picture or two, whenever I don't feel super inspired.
    Anyway, we've been doing so good, and even started to see glimpses of normalcy, as we saw what it might feel like to just have a normal healthy newborn around instead of our spectacular little flawed miracle. Then last night Lily had a tough night.  No apnea, but this time we are seeing the results of her weak and malformed heart.  Ironically, the improvements we thought were being made with her feeding, are exacerbating her heart conditions.  You see, her mother and I are not the only ones suffering from broken hearts, so is Lily.  As the almighty God as my witness, I so wish that I could trade her kind of broken heart for mine.  God gives to us the burdens He purposes for each of us as individuals, and we must learn to accept it.  Lily has her burden, and I have mine, her mother has hers, and you have yours. Lily's hospice nurse came today and examined her, listened to us, and answered questions. Her nurse has been wonderful, by the way.  She takes the time to actively listen to all our questions and concerns with genuine compassion, and we appreciate this with all our hearts.  Healthcare workers truly are a part of the healing hand of God, and nurses are often the part that actually touches those in need of healing.  Evidently, the stress involved with using the bottle to feed Lily causes strain on her already weak heart.  This inhibits her heart from distributing oxygen to rest of her body, and causes her blood oxygen saturation to plummet.  As a result, last night, her pulse-oximetry monitor would go off every half hour or so, keeping mom and dad, not only awake, but stressed out all night.  It was a really hard night, as we are at a point where the lack of sleep is literally painful.  
     Today, Lily is weak, having strained her cardiovascular system so much last night. Heather and I are again exhausted, both physically and emotionally.  I have to say that Heather is a remarkable woman.  I thank God for giving her to me as my help meet and soul mate.  I feel truly grateful to have her as my partner, especially now, in a time like this.  She has, it seems, nearly unlimited strength to keep caring so diligently for not just Lily, but all of us.  I truly believe that she will sooner work herself to death, than to neglect even one need of our children.  And she gives me support, love, and encouragement, even when she is totally spent.  Being both a wife and mother, is such a wonderful burden, and women are wonderfully designed to the task by the very designer of the universe.  His genius is exemplified in His most beautiful creation known as woman, and none better displayed than in a woman who has placed her faith in her Creator. My wife is a great example this.  And, she is an example of how no one has your back more than a Godly mother.  She will readily sacrifice her everything for her children, and will NEVER desert them, regardless of what it may cost her.  I am doubly blessed, in that I have a Godly mother, and so do my children.  So does Lily Belle.  I am so thankful for my wife.  Oh how I fall short of the honor God has bestowed on me , by giving me her.  I couldn't make it without her, I wouldn't want to.  I love her so very very much.
     Lily is slightly better this evening.  Today, in response to the cardiac strain caused by the bottle feeding, we went ahead and had a feeding tube placed.  It looks so terrible and uncomfortable, and causes Heather and I to feel for Lily.  However, Lily has adjusted well, and is taking to it well.  Certainly better than I would take to a tube shoved down my throat.  But my Lily Belle makes it look so easy.   She is now resting, having just been feed her biggest meal yet.  I've told of her strength before, and here is yet another example.  Our hope is that she will have an easier night tonight with as little strain on her heart as possible.  I find myself thankful to Lily yet again tonight.  This time for inspiring me by her strength, and for reminding me of the blessing on both our lives that is her mother.

-Brian (Lily Belle's Dad)

Perfect Parents

April 2nd, 2013

      Good afternoon!  Sorry, but dad just didn't have it in him to blog this morning.  In fact, my morning with Lily was necessarily cut short, very early, because as it turns out I am mortal after all.  The fact is that dad is simply exhausted, and I guiltily slept for at least 6 strait hours from about 4:00am to just after 10:00am this morning.  We are out on Lily's first outing, and I am sitting in the car with her while Heather is enrolling Daisy for kindergarten.  I really don't like waiting in the car, evidently neither does Lily.  So to pass the time, I'm writing.  Lily is doing well, and hasn't had any breathing episodes in over 48 hours now.  Even so, Heather and I just can't quite bring ourselves to allow her to spend more than a few minutes at a time out of our arms.  This concept has been the subject of much conversation between us, Lily's parents, for the last couple of days now.  We need sleep, but fear of what may happen consumes us, and we can't bring ourselves to put her down. We feel that we must keep watch at all times so that, if she starts to slip away, we can both immediately be right there with her.  My heart nearly stops with fear at the very thought of my not being with her when the time comes.  It would make me the worst dad in the world, if I missed that moment just so  I could sleep a little, right? This is in addition to the regular  stuff that all new parents struggle with, which is that babies cry when you put them down.  The temptation is always to give them whatever they want, because we  love them and want them to be happy.  We, as parents, don't want them to be upset, especially when they are so small and innocent.  So we spoil them.  Which, lo and behold, makes them rotten! 

    The other night, we were talking about this very subject, and a thought came to me.   As a joke, I said "well, it doesn't really matter of we spoil this one anyway, so spoil away."  I am sorry for how morbid that sounds.  I am really only realizing how morbid a joke that is, as I see it written before me right now.  But, I suppose it serves to give a glimpse of the atmosphere around here as of late.  Anyway, I got to thinking a little deeper about what I meant by that.  What is it, like any attempt at humor, that leaves us thinking, "yea that's true".  In this case it is because we know that Lily will not live into adulthood.  I realize that doesn't make the joke any funnier by any means, but bear with me here, there is a point developing.  The thing that makes a parent a good parent, is not our ability to keep our kids happy all the time.  Nor is it preventing them from being upset or disappointed.  But a good parent is one who can best prepare their children for adulthood.  Our job as parents are to mold, groom, train, discipline, and prepare our kids to cope with an unloving,  hostile, depraved, violent, and dying world.  At the same time we are to teach them how to find joy, kindness, contentment, peace, and love in such a world.  Many times this means purposefully depriving them of the things they think they want.  And yes, sometimes it can even mean allowing bad or even hurtful things to happen to them, in order to teach them important lessons about life.  These concepts would do little good if we did not, at the same time, teach our kids from God's word about: kindness, forgiveness, grace, mercy, and the love of Jesus Christ.  These things are what make a good parent.  Like nearly everything else that is truly good, it requires restraint and self-discipline from us as parents, to achieve.  The poorly conceived joke about us and Lily Belle only reflects that we get to be off the hook on some of these self-restraining  parenting exercises.  The humor is an attempt to relieve the excessive strain caused by the notedly heavier burdens required of us due to Lily's condition.  But once again, the situation with Lily points us to the very valuable parenting lessons taught by our Heavenly Father's example.  He is, after all, the only truly perfect parent.  

     God sometimes allows us to reap severe consequences for our actions in order to teach us important life lessons.  (Hebrews 12:9-11).  God, at times, even punishes us in order to save us from our selfish and destructive behavior.  The Bible tells us that He does this because he loves us. (Proverbs 3:11-13).  Also, as we know all too well,  God allows us to experience trials in our life in order to strengthen us, and to accomplish His purposes in us and through us.  (Romans 5:3-5)   As a matter of fact, the Word of God tells us we should be grateful for trials, because they are how God accomplishes His purposes in us.(1 Peter 1:6-7).  Needless to say, we, like children, do not by nature like or enjoy suffering.  At times, the suffering we experience while God is working on and through us, seems far to difficult to bear.  But God promises that if we will be patient, place our faith and trust in Him, in due time He will "strengthen, stablish, and settle you" .  (1 Peter 5:10).  We can lead our children to better understand these Biblical concepts later in adulthood, by following God's example in our own parenting.  It will not only help our kids in the immediate by teaching them right and wrong and so on, but it will enable them to recognize how God is dealing with them later in their adulthood whenever they are facing trails.  

     I apologize if I'm starting to get a little too  "preachy" in this post.  But due to the trial we are experiencing with Lily at this time, I am spending a considerably greater measure of my time and attention on prayer, reflection, and study of God's word.  As a result, that is what is coming out.  (Luke 6:45).  We want so badly to be perfect parents for all our children, even though we know we can't always be.  Through the reality of Lily's limited time, God  has provided motivation for us to try even harder than ever, to be obedient to God's word in how we parent.  We sometimes let ourselves become  lackadaisical because we take the time we have with our children for granted.  Lily has shown us how foolish this is.  We pray that everyone will stop for a moment and internalize this truth: that time is limited, and we must not let the opportunity pass to make the sacrifices necessary to teach our children life's  important lessons.  Our thanks goes out to all who have responded to these blog posts.  It is extraordinarily uplifting to hear how so many people have  come to love for a little girl that they have, in many cases, never even met.  What a miracle!  Maybe there is hope for mankind after all.  Lily Belle causes me to be so hopeful.

-Brian (Lily Belles Dad)

Fearfully Optimistic

April 1st, 2013

     Lily is doing better this morning. There I said it, and I am going to allow myself to believe it.  Allow me to explain.  Back and forth we've gone in the last 5 days.  In between periods where Lily seems to be doing well, and we start to think things are improving, and then horrible ordeals where she crashes.  Then, suddenly, we are convinced she won't make it through the night. To use the cliche' of "it's been an emotional roller coaster", doesn't come close to illustrating the emotional beating we receive every time it happens.  Yesterday morning started with one of these episodes, probably the closest call since her first few hours in the hospital.  Heather was convinced, all morning, that Lily wouldn't make it through the day. She continued to labor with her breathing all throughout the morning, and we continued down the emotional road of believing this was our last day with her. But, she finally started to level out around 11:00am and we went on to have a really good day.  She started breathing more regularly, and started to show signs of appetite.  Heather, who had been working with her so very diligently for days, finally started getting some real success with feeding her with an oral syringe.
      By late last night into early this morning, (keep in mind we don't really sleep these days,) the conversation started to turn toward the optimistic.  And we started to get really scared.  Scared of the the pain, you see, because to begin allowing yourself to have optimism means setting yourself up for even greater disappointment and loss.  Is that weird?  It's just how we felt/feel.  As soon as the words start coming out of your mouth that speak of any kind of future like; "maybe if she keeps doing better, she can...", suddenly the dooming reality of Lily's condition comes popping out, right in your face, like one of those cardboard cutouts of a menacing bad guy that gun ranges use to train cops. (Sorry I watch a lot of movies. They probably don't even really use those things. But, I digress).  The truth is that even those conversations hurt so very badly.  Much less the reality of going through these ups and downs.  So the question becomes; do we allow ourselves to be optimistic?  Or do we continue to guard our selves in order to temper the pain when our worst nightmare finally becomes reality? Then we look at our daughter.  Lily Belle is so incredibly gorgeous, and she has a way of drawing you in.  She gives you such a great blessing,  just by looking at her.  True beauty does this to us, whether it is music, nature, or art.  And Lily is truly a great work of art, sculpted by the most skilled artist that ever existed,  The  Creator.  And let me testify to you, that He really outdid Himself on this baby girl. The conclusion Heather and I come to is this: it is definitely worth it to be optimistic.  It helps us to become vulnerable, so that we can fully enjoy and appreciate Lily while she is here.  There will come a time, maybe very soon, maybe not as soon, when we will have nothing left to feel, but mourning.  We have decided to do our best to hold off those feelings until the appointed time.  Needless to say this is an extremely difficult concept to put into practice, and we fail multiple times everyday.  But, Heather and I are helping each other to cope by back-and-forth reminding each other "not yet sweetheart, she's still here".  The overall point is that, the risk is worth the reward.  Why should we allow fear of disappointment rob us of the opportunity to fully experience love and beauty? I think we shouldn't.  The situation for us is kind of intense and extreme due to the circumstances.  However, I think there is a message in it that can apply to nearly all the relationships in our lives.  
     Every day we tend to let cynicism prevent us from allowing ourselves to be vulnerable to other people.  The risk that we take, when we attempt to place trust in people, is often too great for us to actually do it.  And although we may not want to admit it, the truth is, we are simply afraid of getting hurt.  As a result, we ourselves tend to become the offenders.  By keeping people at arms length, and always super protecting ourselves by pushing people away.  Sometimes we let ourselves become the ones who downright mistreat others.   Ironically, it is because we don't want them to get close enough to mistreat us.  The truth is,  people are inherently selfish.  And nearly everyone is capable of failing you.  In fact, they inevitably will.  That's right everyone WILL fail you at some point or another, just like inevitably Lily WILL leave us someday.  It may even be today.  We must learn to accept this, and say: I will love people anyway.  Just as we have said we will love Lily Belle, completely, anyway.  It won't be easy, in fact I find it is impossible for me.  It requires my Savior's help.  It is not my strength, but His, that enables me to say:  I will accept the pain that comes with being optimistic.  I will endure the heartache that comes with loving someone who is no more perfect than I am.  It is not I, but Christ who strengthens me, that makes this possible. (Phillipians 4:13).

     So here we are this morning, feeling optimistic about Lily Belle.  We are going to have the nurse hold off on the feeding tube, and try to continue to feed her orally.  We have used less oxygen in the last 24 hours, and we are excited about that.  We are looking at Lily right now with great expectations.  It is wonderful, and we are so scared.  Heavenly Father give us strength. Thank you Lily Belle, for helping dad this morning, to learn how to love you, and others, more fully.

-Brian (Lily Belle's Dad)

Good first morning Lily Belle Litchford!

Easter Lily

March 31st, 2013 11:00am

    Happy Easter! Another first for Lily.  We are so proud she made it to celebrate our risen Lord with us today!  This morning, once again, my heart is full.  I have in my arms, as I type, my very own Easter Lily.  More beautiful, pure, and glorious than any other that graces the alters and crosses in countless churches around the world this morning.  

    Although I had done it before, last night I couldn't help reading all about Easter Lillies on the Internet. The trumpet shaped white flower, that shares a name with my daughter, has over the centuries, come to symbolize purity, virtue, hope, and life.  I can't help but to draw the obvious parallels to what my Lily means to me.  One only needs to lay their eyes on her sweet, serene face to see that she represents the picture of purity and virtue among all of human kind.   This brings me to something that our pastor said while praying with us the other day.  This stuck in my mind, because I don't think I had quite thought of it this way before.  He was thanking God for everything about Lily, and he said "thank you Gracious Heavenly Father that Lily will never know sin."  What a wonderful, relieving thought!  To experience this life without ever knowing the darkness of sin!  Even though Lily's battle with her broken and imperfect body, (which like all disease and death, is ultimately the result of all mankind's sin,) she will never be able to understand and experience the darkness that comes with willingly disobeying God.  This gives me great joy, as a father, for her.  It frames a picture of her as representing, like the Easter Lillies, the most pure and virtuous among us.  It also serves to reveal  by contrast my own filthy sins.  Oh how I, like my Heaven Father, hate sin.   I reflect the sentiment of the apostle Paul "O wretched man that I am! Who will deliver me from this body of death?" (Romans 7:24).  Why do we do it?  Why serve self, when we have the opportunity in this life to serve Christ and others?  Because we like Paul, and everyone else, wrestle with our depraved, self serving, sin nature, and we cannot overcome it.  But, there is hope.  The love that fills me for this perfect child with a broken body reminds me of the love of my Heavenly Father.  He looks on us with uncomparable compassion and love. This hope, is where my Easter Lily points me.  The hope we have in Christ. Who loved us so much that He took on the full consequence of our sin for us.  He fought and won the battle we cannot win, the battle of sin and death.  Just as I would, in a heartbeat, take the burden Lily carries so that she could have life,  so Jesus did for all of us.  She helps me to understand that better than I ever did before.  

    Lastly, Easter Lillies symbolize life.  It is not just this  physical life, but the eternal life promised to those who believe on Christ unto salvation, and sealed by his defeat of death which we celebrate this morning.  Jesus rose from the grave, and he has promised that we also will live again with Him, and those believers who have gone on before us, forever.  My Lily has made me begin to think about life a little differently than before.  First to appreciate the gift of this life, because the measure of it is so short.  Just this morning we had another breathing episode, and for a full 20-30 minutes Heather and I again held her hands, and did our best once again, to make sure she knew that, if this was her time, she would pass directly from our arms to those of her Savior Jesus, and not for one second would she be alone.  It was a tough battle, and she fought bravely.  And once again she decided not yet.  Almost immediately, the other kids were up and in the kitchen digging through their Easter Baskets.  The three of us got up and went in to join them, not wanting to let that experience go by without all of us being together.  I hope we continue to appreciate the present like that even when Lily has gone on.  Also, she brings me to think about the eternal life we have in Christ.  I find so much comfort in knowing we will be reunited again with her someday, and that she will be in the loving care of Jesus until then and forever.  Our Easter Lily  continues to minister to us every second. Thank you Lily Belle for ministering to me yet again.  And thank you Lord, once again for revealing yourself through her.

-Brian (Lily's Dad)