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)