The One True Specialist

If you have seen the recent tweets in the lefthand column of the blog then you know that William had a bronchoscopy performed Thursday morning. The good news: The procedure went well and the pulmonologist was pleased with the immediate findings. A small sample of lung tissue was taken to study further and to detect any possible infection. We should know more on those results later.

The bad news: Since the lungs appear to be anatomically normal, it led us to also meet with a neurologist and geneticist. Our neonatalogists have dicussed the need for these consultations for several days, so it was nice to go ahead and have them while we were at the same location as those specialists. Basically more tests (MRI, genetic blood testing, skeletal survey, etc.) will be conducted in an effort to determine why his breathing ability seems to be inhibited and if his muscles can perform properly or whether his condition is simply due to his prematurity.

It has been a long few days filled with uncertainty, fear, sadness, prayer, pleading with the Father for healing, and in the end hope in the resurrection and the eternal.

Several years ago, when John Eldredge wrote his book "Waking the Dead," he focused on this statement from Jesus in John 10:

The thief comes only to steal and kill and destroy;
I am have come that they (his sheep or disciples) may have life, and have it to the full.

Also, later in I John 3, the disciple says that Christ came to destroy the devil's work.

This reality has never been more true to me than now -- Satan REALLY wants to harm me, my wife, my son, and remove anything that's a blessing from God in this world. He isn't playing around and he doesn't care how it occurs or whom it injures. For him, the more death and destruction, the better.

So, we turn to God through the gate of our good shepherd and protector (Christ) for he has the authority to lay down his life and take it up again -- and praise God that he has done so! He will use this same authority one day for me and my family to raise us up again. In the meantime, the Father, the Son, the Holy Spirit and the church love and comfort us. And for that we have no words.

a word from Will

Gooood Aaafternooon, Auuustin!...this is Will, live from the NICU. Rumor has it that my parents are doing a lame job of giving everyone the 4-1-1 these days so I am taking matters into my own hands. Of course we should cut them some slack as I am sure they are crazed, running around to get my room just right and finding me super fun toys to play with.

So, everyone keeps asking "when are you going to blow this joint?" Trust me, if it wasn't for all the attention I've been getting from the cute nurses and the Doc they call "The Baby Whisperer", I would have been out of here weeks ago. Oh yeah, well, there was that other small detail...breathing on my own...which, speaking of, I have been doing A LOT of these days. In addition to eating...and pooping...and smiling...and pooping...and smiling more when everyone tells me I am "sooo cute", especially when I am "Milk Drunk" (see pictures below), and "sooo big" (um, okay so only here in the NICU do you get nicknamed "Moose" because you weigh over 5 lbs...5 lbs 8 oz to be exact...I won't even mention that I only look like a moose because some of the others are the size of chihuahuas!)

Like I said, I've been breathing like a champ...even had my oxygen taken away. I've also been eating so well that they removed the feeding tube, which I have to say was not only unattractive but awkward (who eats through their nose?!) I also did both of these activities and more while staying warm which they say is important (of course who wouldn't be warm when you are wrapped up like a burrito?! Seriously, I haven't seen my hands for a week!)

And I had been doing all these things super well...so much so that The Baby Whisperer and his Sidekick said that I would be going home SOON. (Thus, why Mom and Dad have been a little preoccupied) But then this word kept being thrown around...circumcision...um, yeah, sounds ridiculously painful, am thinking now "why would I want to go home with these people?"

During my thinking time, I start to get a little chilled, a little winded, and my poop which had been so lovely hours before is now questionable. My nurse starts doing the typical NICU song and dance in my honor...the one that goes "oh, two steps forward and one step back"...um, I didn't mean to dance backwards but I guess I have. So, two more steps are needed for me to go home. My poop has checked out as stinky but normal so now I just have to warm up and wind up. Pray that I do that soon as I think my parents are getting loopy from all the hand washing and hand holding. They want me home STAT. And, well, I have decided that I can be a man and face the "Big C" if it means going home with the coolest Mom and Dad ever (just sayin')

Before I forget...a big Thank You for your prayers. Mom and Dad tell me all about them. Everyone here says I am a Miracle (um, sounds much better than a Moose) and I believe them. YEAH GOD!!!!

-Will

Amazing!

Excellent news!  William was just placed on a nasal cannula to provide supplemental oxygen!  This is truly amazing considering his condition just five days ago (Saturday night) when he was again having intermittent full lung collapse and the settings on his high frequency oscillating ventilator were being increased.

Thank you everyone for your prayers!  God has definitely been at work in our son's life.

Dana or I will send a more thorough update in the future and hopefully be able to include some pictures of him.  One quick detail: One of the nurses yesterday said, "This is a miracle!  Going from the doctors not knowing exactly what was wrong on Saturday and Sunday to a nasal cannula in such a short time frame is incredible."  Another nurse tried to corner one of the doctors yesterday and admit that it was a miracle.  The doctor wasn't ready to give that proclamation yet, but we certainly will.

As we celebrate today, we also grieve with friends.  One is burrying her fiance and others have an adopted son still in Haiti.  After yesterday's earthquake, we don't yet know news about his condition.  We pray God's blessing and peace on them all.

Extubation Jubilation!!!

Okay, so it's way more AWESOME than it sounds (ex·tu·ba·tion (kst-bshn) n. the removal of a tube after intubation of the larynx or trachea) and a big step for Sir William, who only last night was scaring the pants off his parents with high oxygen intake, alternating lung collapse and very fussy behavior (granted I would be even more agitated if I had to actually miss a meal!) But today is a new day and one that we are REJOICING in. Mark and I prayed that desperation prayer last night...you know the one where you actually confess that you are powerless and need serious help...the ones that God loves because it actually means we are at the end of ourselves and are seeking His will and not our own...that ONE. We also cried out to hold our baby (I mean "really" hold our baby...not this touching-his-head-and-toes-pretending-stuff) and guess what...

GOD ANSWERED. We had 30 sweet minutes with our son.




















How it all went down...
About 3:30 this morning, Will thought it might be fun to pull out his breathing tube (he's been threatening it for awhile but decided to do it when Nurse Practitioner Nancy was on duty, knowing she's a sucker for reckless behavior) and when he did, she decided to give the C-Pap machine a try (still gives oxygen, but allows him to do the work) He's been up for the challenge for 8 hours now and doing well. Given the two days he had prior to this, there is still a chance that he will tire and have to go back to more assistance. But for now, we are all in Extubation Jubilation!!!

Also, a pediatric pulmonologist will be stopping by to see him today to see if we can get better understanding of why his lungs collapse sometimes and why, mysteriously, it will alternate sides. Please pray for wisdom for him and our team of doctors.

Once again we are reminded of God's faithfulness and are praising Him for one more day with William, along with our answered prayer to hold him. We are also thanking Him for all of you who have also diligently prayed and held him from afar.

-Dana

MOOSE

Our favorite NICU nurse who has nicknamed Will "MOOSE"...am hoping it's only because at 5lbs 1oz he's one of the biggest in there...had the best time making him a plaque (plaster) of his little feet last night. He, on the other hand, was not as big of a fan! She's the same nurse who staged this fun New Year's Eve picture and who spends hours caring not only for Will's physical development but nurturing his spirit as well (oh yes, and training these new parents!) As we were leaving left last night, she mentioned a Kutless song about "what faith can do", saying that it was definitely meant for Moose and that we should try find it. Turns out it was on the radio when we got in the car and we definitely agree...see what you think.

Heidi, we are so thankful for you and are praying for you and your sweet family today.

Celebrating God's Blessings!

After 3 long weeks of being able to only touch William's hand (and, occasionally, the top of his head) through his tiny isolette doors...well, there was that one diaper change that I got to assist in - you know, the one that he decided to hold his breath for and that brought the emergency team running...we finally had the opportunity last night to snuggle with him! His hands were held close to his heart; his head resting in the palm of my hand. Ahhh...sweet comfort for him...and US!

I left the NICU ecstatic, thinking we had just had our best day yet (read on as it got even better today) and, oddly, the chorus of James Taylor's "How Sweet it is to be Loved by You" popped in my head. Not completely odd after I thought about how loved I felt that moment...loved by sweet William, loved by my amazing husband, loved by you, the friends and family who have prayed countless prayers for us and our son, and, most importanly, loved lavishly and unconditionally by God. How sweet it is! How truly blessed we are.

Earlier this week, I was wrestling with God (not that I thought I could win or anything), questioning His purposes, struggling to understand why He allows suffering (especially when it involves a sweet infant), and wondering how I would reconcile my faith with my current reality. Certainly God can heal William...but will He? Does He want to answer our prayers? (rhetorical question of course) What if the answer is NO? Fortunately, God can handle my questioning, my anger, my disbelief for a time and then He scoops me up as His child and reminds me that He hasn't promised me a perfect life (or as my Dad and I used to jokingly say when I was kid - "who said life was fair?!") - at least not here on earth - but He has promised to love me, to hold me, to never leave me or forsake me. He is GOOD. If our prayers get answered in the way we wish, HE IS GOOD. If they do not, HE is still GOOD. He gives and takes away, blessed be His name. I share this only to offer comfort to those who may struggle with the same questions. I also want to share scripture that has encouraged me the last couple of days.

Philippians 4: 6-9 (stated plainly in The Message):
"Don't fret or worry. Instead of worrying, pray. Let petitions and praises shape your worries into prayers, letting God know your concerns. Before you know it, a sense of God's wholeness, everything coming together for good, will come and settle you down. It's wonderful what happens when God displaces worry at the center of your life. Summing it all up, friends, I'd say you'll do best by filling your minds and meditating on things true, noble, reputable, authentic, compelling, gracious - the best, not the worst; the beautiful, not the ugly; things to praise; not things to curse. Put into practice what you learned from me, what you heard and saw and realized. Do that, and God, who makes everything work together, will work you into his excellent harmonies."

So...to continue you on with sharing God's blessings! This morning we met with one of our doctors who we just love and he shared that Will's chromosomal test and the metabolic screening both came back negative. He also showed us an X-ray from yesterday where Will's lungs were completely open, PERFECT (and to see the delight on his face when he showed it, we knew it meant as much to him as us) He is not out of the woods yet...but certainly it news to CELEBRATE! The next step is to wean him from the ventilator (they are estimating a week or so) so please continue to pray for that as well as prayers that he does not get an infection (which is common after having been in the NICU for this amount of time)

Mark and I cherish your friendship and are thankful that we have you to share this journey with. We feel your prayers of comfort and peace!

Dana


JT Lyrics...

How sweet it is to be loved by you
How sweet it is to be loved by you

I needed the shelter of someone's arms and there you were
I needed someone to understand my ups and downs and there you were
With sweet love and devotion
Deeply touching my emotion
I want to stop and thank you baby
I just want to stop and thank you baby

I close my eyes at night
Wondering where would I be without you in my life
Everything I did was just a bore
Everywhere I went it seems I'd been there before
But you brighten up for me all of my days
With a love so sweet in so many ways
I want to stop and thank you baby
I just want to stop and thank you baby

How sweet it is to be loved by you
How sweet it is to be loved by you

Uncertainty . . . Except for One Thing

I suspect that no one wants to have a serious conversation with one of their child's doctors on New Year's Day night.  Dana and I didn't really have much choice about it, though.  That conversation was followed-up by another one today with the neonatologist who was on duty when William was born.

Both of those conversations provided us a better picture as to William's current condition and some possible future treatments.  Below is an update of his condition.  If you did not realize before, his condition is critical. 

William is now 18 days old.  He was born at 31 weeks, 6 days, so that would make him 34 weeks, 2 days now.  The doctor today told us that it is rare for 31 week babies who have been outside of the womb for this long to still need this much breathing assistance.  (William is currently on an oscillating ventilator at moderate settings.  This ventilator is the strongest mechanical assistance that is provided.  If he progresses, he will can "graduate" to a conventional ventitlator, cpap mask, and eventually a nasal cannula.)  His lungs also continue to deflate sporadically in different locations.

In these circumstances, and in a search for answers, the doctors will begin discussing different treatment options (vitamin A injections, stronger steroids), consulting with specialists, (pulmonologists, neurologists) screening for chromosome abnormalities (We hope those results will be known this week), and rescreening for any birth disorders (The State of Texas does a screen for 29 disorders and the first result returned the possibility of a metabolic disorder.  We should know the results of the second screen soon, also.)

It is still possible that William's respiratory system has not fully developed and we pray that is the case.  However, with each passing day that becomes more difficult to believe.  Obviously, starting to discuss the above mentioned options is very difficult for us.

It is hard for us to scrub-in for NICU visits each day, make the long walks to and from his incubator, have private consultations with doctors, listen to negative news, and not lose heart.  We would both rather have William healed than to experience some sort of emotional comfort, so it is hard to sound selfish; but we do need peace and hope.

Thank you for your prayers and your kind words.

This week I further learned the truth in this statement by Peter to Christ at the end of John 6: "Lord, to whom shall we go?  You have the words of eternal life."