Tuesday, July 15, 2014

Houston, We Have Had Heart Surgery


 Elijah sailed through surgery and is recovering like a champ!

Saturday, July 12, 2014

Sunday, June 22, 2014

We have Returned from the Woods

We have spent the last couple of weeks in the Piney Woods of east Texas with no internet and lots of room to run around.  We have discovered lizards, armadillos, youth camp, water slides (who knew you could break a finger on a water slide?), zip-lining, Blue Bell and watermelon.  Lots of Blue Bell and watermelon. Five of the children practiced their driving skills on country roads.  A sweet local pastor gave us some venison and one child wanted to know if it tasted like moose or bear.  You can take the child out of Alaska, but that Alaska is stuck in there.    We enjoyed the time away to focus on healing and just enjoying the gifts that God has given us in each other.

Sweet baby update:  Elijah only requires oxygen and while sleeping.  He goes for an echocardiogram and cardiologist visit this week and we are hoping to get a surgery date.  The other child hospitalized is doing much better, but will require months of healing.  Here are some shots of what we have been up to.  Thank you for your prayers and notes of encouragement.   Texas is great, but we miss home!




Monday, May 5, 2014

Back for Another Round

(pictures located here)

 to send mail, please contact us at barcaks@live.com for current mailing address.



Friday, June 6, 6:00 pm
Elijah has left the building.

Thursday, June 5, 8:00 am
Sweet baby is doing great.  He will probably go home on oxygen, but otherwise he is so happy!  Hopefully he will be out this weekend and be able to enjoy some of this Texas heat.  Still searching for a place to stay for when we get out of here.  Not updating as much now as another child is in a different hospital with severe hypothyroidism.  So thankful for the Texas Medical Center!

Praise the Lord!   Praise the Lord! Let the earth hear His voice!
Praise the Lord!  Praise the Lord! Let the people rejoice!
Oh, come to the Father, through Jesus the Son and give him the glory! Great things He hath done!

Monday, June 2, 11:00 pm
Not an RT in site today.  Will ask about that in rounds tomorrow.  So flow is still at 2. Elijah passed his swallow study and got to eat today.  So he ate, and ate, and ate.  He truly missed eating!  We are praying about a place to stay, as our time at the Ronald MacDonald House is coming to an end.  We will need to be here a couple of months waiting on and recovering from heart surgery and would like to all stay together.

And without controversy great is the mystery of godliness:  God was manifest in the flesh, justified in the Spirit, sen of angels, preaching unto the Gentiles, believed on in the world, received up into glory.

Sunday, June 1, 10:00 pm
Sweet baby was moved to a regular room today.  Sedation wean should conclude Wednesday.  Flow is 2. He will have a swallow study tomorrow to make sure he is safe to take food by mouth.  He woke around 2 am, but who can complain when it's smiles and giggles?

And can it be that I should gain an interest in the Savior's blood
Died He for me, who caused His pain - For me, who Him to death pursued?
Amazing love! How can it be, that Thou, my God, should die for me?

Saturday, May 31, 11:00 pm
Elijah was awake for over 24 hours.  Awake.  Playing with his toys.  Awake for 24 hours.  He fell asleep around 4 pm this afternoon and woke briefly when siblings and Granny came to visit this evening.  I am hoping he sleeps through the night.  He is off the high-flow cannula onto a regular one.   He will be on 100% O2 until the flow is weaned.  Flow at 2 now.  Pic line was taken out as they do not anticipate needing anymore iv access.  The plan is to move to a regular room in a couple of days.  Ronnie is back and you would not believe the smiles and giggles sweet baby greeted him with.  First time he has lit up like that and responded with such joy.  Glorious.  Just glorious.  Praise God.

Living He loved me; dying He saved me; Buried He carried my sins far away;
Rising He justified freely forever; one day He's coming - O glorious day!

Friday, May 30, 11:00 pm
Dr. Rich said he would get us out of PICU before the end of the month.  He did it with a day to spare. Sweet baby is now in the step down unit.  He will go to a regular room before being discharged.  Flow is at 6 and O2 at 30.  As you can imagine, this has been a very stressful 6 weeks and we are especially thankful tonight for our former pastor Bro. Rick. We thank God for him, for the gift of faith, and for His Sovereignty. Once again, Elijah loves Mommy holding him.

Teach us, Lord, full obedience, holy reverence, true humility;
Test our thoughts and our attitudes in the radiance of Your purity.
Cause our faith to rise; cause our eyes to see Your majestic love and authority.
Words of power that can never fail - let their truth prevail over unbelief.

Thursday, May 29, 11:30 pm
Sweet baby was awake all night long.  All.night.long.  Happy.as.a.clam. He slept all day. He just woke up.  We are going to have a talk about this new schedule.  Soon.  Flow settings are about the same.  IV sedatives are all off.  Only meds are oral.  Looks like Elijah is on the road to recovery.  It will be slow, but we are on the road.

Speak, O Lord, as we come to You to receive the food of Your Holy Word.
Take your truth, plant it deep in us; shape and fashion us in Your likeness 
That the light of Christ might be seen today in our acts of love and our deeds of faith.
Speak, O Lord, and fulfull in us all Your purposes for Your glory.

Wednesday, May 28, 9:00 pm
Great day today!  Elijah was awake most of the day, and I almost got a smile out of him.  Almost.  There was a lot of holding and a lot of cuddling going on.  Feeds started again and the sedatives continue to be weaned.  O2 settings are the same, maybe some weaning tomorrow.  I have told of some not-so-favorite nurses, but the vast majority are pretty awesome.  And there are some awesome RTs also.  There are patients flown in here from all over the world for the medical care.  We have met people from Ireland, Qatar, the Arab Emirates, Ghana, and Nigeria.  One of our favorites is our toddler neighbor, from Mexico, whose accent on his only 3 English phrases sounds like he learned them from a British comedy.  Hilarious.

Speak, O Lord, and renew our minds; help us grasp the heights of Your plans for us
Truths unchanged from the dawn of time that will echo down through eternity.
And by grace we'll stand on Your promises, and by faith we'll walk as You walk with us.


Tuesday, May 27, 11:00 pm
Happy 10 month birthday Elijah!  We celebrated the day by extubating! Thank you Dr. Rich!  That's right, sweet baby is off the ventilator!! Yeah!!  He is on a high-flow nasal cannula, O2 at 65, flow is 12.  He has not been fed since 3:00 am this morning but is getting IV fluids. They don't feed them when they are at such a high flow rate, so hopefully that can go down soon.  He also had a bath today with soap and water, first one in 5 weeks.  Sedation meds should continue to be weaned.

Let everything that has breath praise the Lord; Praise the Lord!

Monday, May 26, noon
Resting comfortably so far today.  O2 50, PEEP 5, rate 12.  Sweet baby is getting a dose of steroids today in anticipation of extubation tomorrow!

The steadfast love of the Lord never ceases;  His mercies never come to an end; 
they are new every morning; great is Your faithfulness.

Sunday, May 25, 11:00 pm
Sweet baby was restless today.  They discovered this evening that a sedation patch they put on him Thursday was missing.  For how long?  No one knows.  Another one was ordered so hopefully that will help him stay comfortable as they are weaning other sedatives.  He was coughing so much this evening he was throwing up. That tube sure irritates his little throat.  Hopefully, they can take it out this week. O2 60, PEEP 6, rate 16.  Plan is to drop the rate to 10 tomorrow.  Elijah should do well with that as he breathes 30-40 now.  Just so you know, Playful Learning Pediatric Therapy back home is amazing!  Truly amazing!

Sing to Him; sing praises to Him; tell of all His wondrous works!
Glory in His holy name; let the hearts of those who seek the Lord rejoice!

Saturday, May 24, 6:00 pm
God is so gracious to give good days after bad ones.  Elijah had a good night.  He has also been awake and comfortable most of today.  Hoping to try pressure trials tomorrow to see how ready he is to come off the vent in a few days.  They were able to reduce his rate today and wean some sedation.  O2 50, PEEP 7, rate 16.  Will miss my right hand as Ronnie heads back to Alaska.

In my uncertainty, Your Word is all I need; To know You're with me every day.

Friday, May 23, 3:00 pm
I am not against re-taping vent tubes when needed.  The tube needs to be placed in a precise location so it helps and not hinders Elijah's lungs.  Re-taping is sometimes painful for sweet baby as the tape also removes a layer of skin.  Some RTs (respiratory therapists) put down a protective barrier to help his skin.  Some RTs  can re-tape with little or no sedation medication. A little taste of my conversations last night:

"His tube needs to be re-taped,"  says new nighttime RT at 10:00 pm
"No, it has been like that all day.  Dr. Rich is fine with it. And Elijah is satting well."
"It needs to be re-taped,  it makes me nervous."
"Really, it's fine."
"I am going to get him a paralytic and re-tape."
"Not necessary.  Plus, he is sleeping, let him be."
Sweet baby gets the paralytic.
"I don't see any measurement marks," says she.
"It's a black line," says me.
 She re-tapes.
"Did you see the line?"
"No, this should be good.  I didn't see any marks."
"There is a black line."
"Well, I didn't see it."
Elijah desats.
"Could we please get an  x-ray to check placement?"
She raises all his vent settings.
"I think we need an x-ray, he was fine before you messed with him."
Continued desatting.
"Can we get an x-ray?  Now?"

X-ray at  midnight shows tube 2.5 cm too deep.
Paralytic.
Re-tape.
"Did you measure?"
"It's good."
"Did you see the black line?  How did you measure it?"
Silence.
"I want another x-ray."

X-ray at 3 am shows tube too deep.
Paralytic.
Re-tape.

X-ray at 6 am shows tube too deep.
Paralytic.
Re-tape.

Praise God for shift change at 7 am.

No big surprise that sweet baby did not make much progress overnight.  On a positive note, the rash is slowly getting better and nothing is growing in cultures.  And I am learning to trust God more and more, minute by minute.

Your great power is shown when I'm weak.  You help me to see Your love in this place.
Perfect peace is filling my mind and drawing my heart to praise You again.

Thursday, May 22, 8:00 pm
Dr. T, "Have you held Elijah?"
"Not for a month."
"You need to hold him."
"Uh...yes, I totally agree!"

It lasted for an hour.  Sweet baby was mad as they had just turned some vent settings down and he was coughing.  A lot.  I went to put him back in bed and saw a gaping hole in his stomach.  Yes, his g-tube button had come out.  While I was holding him.  Epic mom-fail day. His rash looks about the same, no fever. His vent settings went up.  O2 at 60, PEEP at 7, rate at 24.  Tomorrow is a new day.

Thank You for the trials, for the fire, for the pain
Thank You for the strength, knowing You have ordained every day.

Wednesday, May 21, 9:00 pm
Elijah had a good night. And a good day today.  Dr. T wanted to wait another 24 hours before making any vent changes.  Nothing growing in cultures.  Fever is down and rash looks better.  Immunologists came in today.  Preliminary results should be in by Tuesday, and they will repeat the blood tests 3 different times to check trends. Thank you for your prayers on our behalf.

In Your grace, You know where I walk.  You know when I fall, You know all my ways.
In Your love, I know You allow what I cannot grasp to bring You praise.

Tuesday, May 20, 11:00 
Plan is to keep everything the same today on vent settings.  Dr. T wants sweet baby's blood gases stable for 24 hours before any weaning.  Nothing is growing in cultures, but they are taking still more.  Today they say the rash and fever could be due to extended antibiotic use.

2:30 pm
The immune specialists are being called in later today or tomorrow to make sure docs are not missing any underlying reasons sweet baby is not getting better.  Good news is that they don't think Elijah has leukemia.  I know, I didn't realize that was on the radar either.

Monday, May 19, 5:00 pm
We had a rough morning.  First time I have asked that a nurse not come back into our room.  The day nurse is good today, but she is only here for one day.  Last night's nurse?  God must have brought her in to teach me to extend grace.  Sweet baby's night caused him to take a step back in vent settings.  I thought when I left the room after midnight that it would stay pretty calm. Elijah received lots of extra bolus' of sedation, numerous paralytic doses, and major increases in his vent settings due to bed changes, spills, re-tapings of vent tube, incorrect cooling blanket settings, temp probe placements, unnecessary blood gas draws. weighs, and general agitations.  Really?  A paralytic because you want to weigh him?  Like I said, I need to learn to offer grace to others.  O2 is at 80, PEEP is 6, rate is 26.  The new PA here?  Hope we get a new one soon.   Loved the one from last week.  This one wants to go up on all his settings to give more vent support and check blood gases hourly.  Many times I have had to correct the info she gives the doc on rounds in the mornings.  Thank God that Dr. Rich was back today.  We love him!  He did most the correcting today.  He came in a few minutes ago, "Tomorrow, we will go back to the plan we had last week."  Like I said, we love Dr. Rich.  He is a Fellow and only here through the end of the month.  The new Attending today will be here 2 weeks.  We had a different opinion on sedation this morning.  He is supposed to be reviewing it all as it is "quite the cocktail."

The Infectious Disease Team came in today.  Always a little unnerving to see a bunch of white coats in hazmat gear around your child.  This nasty rash and spikes of fever have them befuddled and taking more cultures.   Some of the rashes are contact as sweet baby's skin is so sensitive and the glues and petroleum products are not nice to him.  I was told yesterday that every time they re-tape his tube, it removes a layer of his skin.  No wonder his poor little face looks so bad.  Praying for grace.  For me, but more for Elijah.

Lord, I know You hear my every sigh.  You hear the raven's cry and give the sparrow food.
How much more will You provide  for those You bought with blood and work all things for good.
And when I am weak I find that You are strong and all I really need is Your grace.

Sunday, May 18, 10:00 pm
More fever.  More cultures.  More need for oxygen. More sedation challenges.   More psycho night nurses. You can really tell which nurses do not have children of their own.  O2 is at 70, PEEP at 6, rate at 15. Sweet baby did well today on his pressure support trial of about an hour.  Had some fun visitors (I hope they found their car, parking here is crazy) and awesome pizza for dinner thanks to friends in Tennessee!

Praise God from whom all blessing flow!  Praise Him all creatures here below!
Praise Him above ye heavenly host! Praise Father, Son, and Holy Ghost!

Saturday, May 17, 9:00 pm
Another fever.  104.6.  Re-culturing.  Sweet baby is now on a cooling blanket and we are waiting for a fan to help cool him down.  He did well on his pressure support trial for about 45 minutes today, then spiked the fever.  Hopefully he can do another trial tomorrow, as it is testing to see if he can come off the vent.  Miss holding my Elijah, it's been 24 days since I have held him.  The same amount of time I waited in NICU.  Praying he will be cuddled in my arms soon.  I miss him.

Whatever my God ordains is right, in His love I am abiding
I will be still in all He does and follow where He is guiding
He is my God, though dark my road He holds me that I shall not fall
And so to Him I leave it all

Friday, May 16, 11:00 am
Well, I guess they can't all be good days.  Sweet baby has another fever today so they are re-culturing everything.  Nothing grew in the cultures from Monday and he is still on antibiotics.  Vent settings will stay the same today to see what this new fever is going to do.  The nurse wants a paralytic to re-tape his tube today, so that sets him back some on weaning vent settings and reducing sedation.  I should be thankful she knows her limitations.  I am thankful for the nurses who can do their job without the paralytics.

Generous King, You give out of Your fullness, showering kindness
You give, generous King, mercies unending. love never failling, You give.

Thursday, May 15, 8:00 pm
Another good day for sweet baby.  Vent setting are the same, but they changed the mode.  He is now on SIMV which will allow him to breathe more on his own.  Not sure the mechanics, but it is a step towards weaning.  Sedation is going well.  Well, except for sometimes in the middle of the night when he gets a jittery nurse.

We have received several awesome care packages these past couple of days:  notes of encouragement, kindles, books, art supplies, homemade soaps, a gift card, some cash, and a car to use.  All so appreciated and humbling.  We thank God for the ways He works through His people.

You spoke and our hearts began to beat.  You gave us breath and the air to breathe.
It's all from You, Lord, it's all from You.  You give the morning sun its light.
All that we need Your hand provides.  It's all from you, Lord, it's all from You.
With humble hearts we thank You.  With grateful hearts we sing out.

Wednesday, May 14, 8:00 pm
Good day for sweet baby.  O2 is 40, PEEP at 7, rate 10.  I imagine they will wean 1 on the PEEP per day as long as his sats stay good.  No name for the new bug, rash still covers his body, but no fever.  Elijah received packed blood cells today as some of his counts were low from being sick so long.  Versed was turned off this morning.  Sedation seems to be under control.

Oh no, You never let go, through the calm and through the storm
Oh no, You never let go, in every high and every low
Oh no, You never let you, Lord, You never let go of me.

Tuesday, May 13, 6:00 pm
No name for the new bug yet.  However, sweet baby is doing well today with the vent and the sedation.  O2 is 40, PEEP 8, rate 16.  He is breathing some over the vent.  PEEP should be 4 to come off vent.

And I can see a light that is coming for the heart that holds on, a glorious light beyond all compare;
And there will be an end to these troubles but until that day comes
We'll live to know You here on the earth.

Monday, May 12, 1:00 pm
Looks like sweet baby will be avoiding the medical coma.  Praise God!   The current sedatives seem to be working.  O2 is at 50 and they want to get it to 40 before they start to wean the PEEP, currently at 10, which is high.  There is certainly a special class in medical school entitled, "How to Freak-Out Parents."  The new doc today said that if Elijah's vent settings don't come down in a couple of days they will start talking about a tracheostomy.  I used to like roller coasters.  This one?  Not so much.

3:00 pm
Elijah weighed 18.5 lbs when entering the hospital, he is up to 21.5 lbs. and 27.8 inches long.

10:00 pm
Seriously?  And yes, I have pinched myself to make sure this is not a bad dream.  Sweet baby has the signs of catching yet another hospital infection.  He had more trouble with sedation this afternoon: spiked fever, rash on his body, and trouble keeping his sats up (O2 is back up to 55).  They have drawn cultures from his blood (to see if picc line caused it), respiratory (to see if another vent bug), and various other places on his little body.  They have changed his antibiotic and now he is on 2 different ones.   Sedation wise:  tried morphine today, didn't seem to phase him.  Ativan was added as they are trying to wean the versed first.  The new precedex that was started yesterday is already maxed out.

Come, weary saints, though the tired and weak, hide away in the love of Jesus
Your strength will return by His quiet streams, hide away in the love of Jesus.

Sunday, May 11, 11:00 am
"Happy Mother's Day.  If this new medication doesn't work, we may have to put Elijah into a medically induced coma."  I knew we should have celebrated Mother's Day last week!  A couple of hours after the vec wore off, sweet baby got pretty active.  "A wild man" is the term they used.  He was done with all this 'lay in the bed and be still' stuff.  He wanted out.  They are maxed out on the 2 sedatives he was started on: midazolam (versed) and fentanyl.  He is now also habituated.  So a different sedative was started, precedex, and they will start weaning the others.  Most meds have a protocol listed by his bed.  How much to give, how much to increase/decrease, etc.  I asked to see the protocol for this new one.  "We don't have a protocol for this one, Elijah is in a special class of hard-to-sedate patients.  We are working on protocols."  Apparently, they tell me, children with Trisomy 21 chew through sedatives that would leave me and you on the floor for days.  Something to do with brain receptors most likely.  If this one doesn't do the job, 'medical coma' may be next.  No.  No.  Just no. 

I remember when I stumbled in the wind.  You heard my cry and raised me up again.
But my strength is almost gone, how can I carry on if I can't find You?
As the thunder rolls, I barely hear Your whispers through the rain, "I'm with you."

Saturday, May 10, 10:00 am
The practice of medicine.  An appropriate title.  We have had Dr. M for two weeks.  Yesterday was her last day on this rotation.  She said we would sit this weekend letting sweet baby rest and heal at the current settings.  Today and tomorrow we get Dr. G.  She is only here for the weekend.  "I know what Dr. M said, but we are going to do something different."  Umm, really? because she knows him pretty well.  "Yes, we are going to try on wean Elijah off the oscillator and back to the ventilator.  Today.  Around noon."

9:30 pm
Sweet baby has been on the ventilator most of the day.  His sats are doing well, his blood gases look good:   O2 at 60, rate is 26, PEEP at 10.  However, since coming off the oscillator, there is an area of one lung that is congested.  His is getting regular breathing treatments to help clear that up.  He is no longer on dopamine and hopefully the paralytic will be turned off soon.

10:00 pm
Vecuronium, the paralytic, was just turned off.

And I will praise You in this storm, and I will life my hands
For You are who You are, no matter where I am
And every tear I've cried You hold in Your hand
You never left my side and though my heart is torn
I will praise You in this storm.

Friday, May 9, 12:00 pm
Hospitals are dangerous places.  The new nemesis is named E.coli pneumonia.  Hospital acquired, ventilator induced.  No improvements likely until next week.  Doc said it would have been better if sweet baby had recovered at least 4 days from the RSV before being hit by E.coli.  It would have given his lungs time to heal. This E.coli hit him at the worst possible time, with sick, weak lungs unable to fight it off.  Permanent lung damage?  Probable.  Elijah's lungs should continue grow until he is about 4 years old so hopefully this damaged, scarred tissue will be replaced with healthy tissue.  Going home on oxygen?  Again, a big maybe. Thinking an insane thought today:  we will very likely exceed the 57 days we spent in NICU.

As the thunder rolls, I barely hear Your whisper through through the rain, "I'm with you."
And as Your mercy falls, I raise my hands and praise the God who gives, and takes away.

Thursday, May 8, 2:00 pm
Sweet baby started vomiting this morning.  He now has a nasojejunal tube (NJ tube).  The NJ goes in the nose and ends in the small intestine, bypassing the stomach.  Hopefully this will help keep his food down.

Wednesday, May 7, 2:30 pm
Being intubated on a ventilator comes with risks.  One is that you may catch a bug.  Bugs like to grown in warm damp places, like your lungs.  They are easily introduced there when there is a direct line to the lungs, such as a vent tube.  Elijah caught a bug.  One that causes pneumonia.  The areas of his lungs affected by RSV were clearing, now there are new areas that are worsening.  They are culturing to discover this new nemesis.  In the meantime, sweet baby is expected to get worse before getting better.

Elijah is now on an oscillator giving him 530 breaths per minute.  His MAP (pressure) is 23.  When they were switching him over, there was an increased risk that his heart would stop, that it would be overwhelmed with the increase in pressure.  So many doctors in this little room at once.  And they didn't all fit, there were several in the doorway and hall.  They asked if we wanted him resuscitated in the event that his heart stopped.  Really?!  You are seriously asking me that question?!  Let me introduce myself to you, because, obviously, we have not met before.  

To be on an oscillator, you must remain still, so sweet baby is now on a continuous paralytic.  And increased sedation.  And dopamine to help his heart.  And antibiotics until they discover the bug.  And blood draws every couple of hours.  This can be so overwhelming.  We were expecting him to get better.  Not worse.  Definitely not worse.  But here we are.

I was sure by now, God you would have reached down
and wiped our tears away, Stepped in and saved the day
But once again, I say "Amen",  and it's still raining.

11:00 pm
I would like to say Elijah is resting comfortably.  He looks to be. The term is pharmaceutically paralyzed.  They say the oscillator will most likely cause swelling, esp in his face and head.  His feet were cold and they asked for socks.  Of course, coming to Texas, who packs socks?  Thankfully, my mom had given me some comfy pink ones.  Just don't tell sweet baby when he gets older!  He is also snuggled with his moby wrap as his temp is running low.  Hopefully, tonight will be a night of rest and healing for Elijah.

When trials come no longer fear, for in the pain our God draws near
To fire a faith worth more than gold, and there His faithfulness is told.

Tuesday, May 6, 4:00 am  
Sweet baby is back on NO.  O2 is 75; NO is 10.  He just cannot keep his O2 sats up.

9:00 pm
O2 is 65.  NO is 9.  Pretty much the same, eh?  Yeah, I know.  Sweet baby's vent tube was too deep so he was desatting and parts of lungs had collapsed.  Xrays every day around 3 am to check tube placement, but it can still wiggle around.  The cardiac team was in today and will evaluate his heart for surgery in 6 weeks. Six weeks.  Then surgery.  Then recovery time.  This was not my plan for summer.  Guess I bought that fishing license a little too early.  Phooey.

I have a shelter in the storm when constant winds would break me
For in my weakness I have learned Your strength will not forsake me
O Jesus, I will hide in You, the One who bears my burdens
With thankful hands that cannot fail You'll bring me home to Heaven.

Monday, May 5, 5:00 pm
More.of.the.same.  Vent settings at 80% O2, 7.0 PEEP, and rate of 26.  Baseline sedation rate has increased. Heart surgery will probably be sooner than later, and in Texas.  It is so hard seeing sweet baby sedated, strapped into bed, with no visible improvements.  It is so hard watching him, not breathing on his own, occasionally struggling against the restraints.  Every part of my being wants to pick him up and hold him, to whisper in his ear that it will all be better.  To tell him how much we love him.  It is so hard.  And yet, we were never promised easy.  But He remains faithful.

I have a shelter in the storm when troubles pour upon me
Though fears are rising like a flood my soul causn rest securely
O Jesus, I will hide in You, my place of peace and solace
No trial is deeper than Your love that comforts all my sorrows.

Saturday, May 3, 8:00 pm
Sweet baby's lungs are slow to heal.  The ventilator settings have gone up some, pressure is at 8 (up from 7) and O2 is at 70, rate is 24.  Elijah is not breathing over the vent (on his own) when he is sedated.  When he does not breathe on his own, it takes much longer for the lungs to heal.  If they sedate him less, he moves around too much and they worry that his tube will get displaced.   Several have told me he is a special case.  Trisomy 21 is hard to sedate, pulmonary hypertension is hard to oxygenate.  Is it a problem that his oxygenated blood is being shunted through his open heart valve and not circulating through his body?  Probably.  They will have to do a heart cath to check the size of the PDA.  Portions of his lungs have also collapsed, thus the increase in pressure to try and open them up.  Originally, they thought maybe a week on sedated intubation.  Today marks Day 10 without an end in site.   We wait.  And pray God's healing.

Power to fight temptation, the world and the devil's lies
Jesus Christ has risen from the grave
Purpose in all our suffering and joy that will never die
Jesus Christ has risen from the grave
How can grief remain when our Savior reigns?

You are our hope, you are our joy, You are our overcoming King.
So we sing "Hallelujah, Jesus is alive!"
Risen from death, ascended on high, glorious by the Father's side
So we sing "Hallelujah, Jesus is alive!"

Friday, May 2, 9:30 am
Yesterday was a crazy day.  We enjoyed a refreshing visit in the park with Aunts Cissy and Judy.  They are always a joy, so loving, kind, and generous.  Their eyes just sparkle.  They came bearing gifts.  One gift was the fun time we had getting to know cousin Cindy.  She brought us laughter.  Sometimes in the midst of trials, we forget to laugh.  And laughing is good.  It reminds us of the joy that only God can give. Shortly after our visit, we got the phone call saying Ronnie's dad had gone Home.  No more struggles in this life.  He is in the presence of the King.  And no matter how much you prepare for that moment...you just can't.  Grandpa will be dearly missed.

Sweet baby's lungs sound a little better today.  They are going to try and wean his O2 which is at 60.  His sedation meds are not lasting as long as they were, still trying to find a comfortable spot for him.  The chloral hydrate was working for 7 hours, now only 3. That is in addition to 2 other IV meds.  Hopefully, he won't need it much longer.

Comfort for weary sinners, strength for the struggling saint
Jesus Christ has risen from the grave
Peace when the waves are pounding, when voices of hope sound faint
Jesus Christ has risen from the grave
How can grief remain when our Savior reigns?

You are our hope, you are our joy, You are our overcoming King.
So we sing "Hallelujah, Jesus is alive!"
Risen from death, ascended on high, glorious by the Father's side
So we sing "Hallelujah, Jesus is alive!" 

Wednesday, April 30 11:00 am
God is an awesome designer.  It is amazing the intricacies that are built into each of us, and how unique we each are.  Not much has changed for sweet baby.  His lung x-rays today were about the same.  They tried a new medication to open up his lungs and get the secretions out, but it did not work.  Looks like we just have to let this virus run it's course and support his breathing all the while.  His O2 is not crashing, and it seems they have found a good sedation for him.  He no longer opens his eyes and looks around, but I am trusting that this is the best for his little lungs to heal.  The picc line insertion went well.  They are talking more of heart surgery and where we want to have that done, here or Alaska. They will talk with his cardiologist back home. Praying for discernment for the decision.

Shall I take from Your hand Your blessings yet not welcome any pain?
Shall I thank You for days of sunshine yet grumble in days of rain?
Shall I love You in times of plenty then leave You in days of drought?
Shall I trust when I reap a harvest but when winter winds blow, then doubt?
Oh let Your will be done in me, in your love I will abide.
Oh I long for nothing else as long as You are glorified.

5:00 pm
Sweet baby remains resting.  Even sleeping he is ever so precious.  While he rests, I want to share some blessings with you.  God is merciful and good and provides more than we ever think to ask.  Ronnie and the children went to visit Grandpa and Grandma today.  I was expecting a quiet day.  What joyous surprises the Lord had in store!  First, our dear friend and former pastor Rick came and visited.  A few hours after he left, another dear friend Reed stopped by.  What an encouragement and joy these men were.  Such a glory to talk of Christ, encourage, reminisce and pray with one another, all the while counting your blessings. I absolutely love my brothers and sisters in Christ and treasure the moments spent with them.  So fun catching up on their families as we have been out of Texas for a while.  Also today, Elijah received a lapel pin from soviet cosmonaut Andrei Borisenko that he had with him in the space station on Expedition 28.

The Ronald McDonald house has been another awesome blessing.  Only four of us can stay overnight, but we can all go during the day.  There is a playground, game room, indoor play area, kitchens, laundry facilities, and TV room.  They always have dinner provided by a corporation or an individual family, and most of the time breakfast or lunch also.  Last night was a candlelight, 5-star dinner put on by The Magnolia hotel in Houston.  It was so fancy it made me nervous!  Delicious food and superb service. The Houston Symphony was also there for a performance.  So much fun!  There is always something special going on at the RMH. This week there will there will be a caricature artist and a barn night.

I cannot put into words the immense blessing of family and friends, near and far, who offer physical and emotional support to each of us.  Even if you are just checking to see how we are doing, sending us a note, taking care of things back home, or praying for us, it is so precious.  Your encouraging words and prayers lift our spirits and cause us to rejoice before our King.

And I cannot make a list of blessings with out including my mom.  She is always there for whatever we need. She keeps the children, makes sure they are fed, watered, shopped for and generally spoiled.  All the while still working her job.  She is amazing!

Are You good only when I prosper and true only when I'm filled?
Are You King only when I am carefree and God only when I'm well?
You are good when I'm poor and needy.  You are true when I'm parched and dry.
You still reign in the deepest valley.  You're still God in the darkest night.
Oh let Your will be done in me, in your love I will abide.
Oh I long for nothing else as long as You are glorified.

Tuesday, April 29 8:30 am

Sweet baby.  He is just so incredibly sweet.  I don't know how God gives this incredible gift of love to such a sinner as I, and I cannot fathom the depths of His love for us.  But there it is.  In the midst of this dirty, broken, tear-stained life, there it is.  And it overwhelmingly washes over me and I am in awe and wonder once again.

They tried to bathe Elijah last night and let's just say it was not his idea of a good time.  (Why do they do these things at 3 am?)  He likes to sit in a tub full of water with Mommy and play and splash and smile and giggle.  That was not the scenario.  He ended up 2 full levels of sedation higher.  They said he was 'agitated'.  I am sure that is an understatement.  He leaves around 9am for the picc line insertion.  Should be gone for about an hour.

Oh the deep, deep love of Jesus, vast, unmeasured, boundless, free 
Rolling as a mighty ocean in its fullness over me 
Underneath me, all around me is the current of Your love 
Leading onward, leading homeward to Your glorious rest above

Monday, April 28, 8:00 am
Still trying to find the right amount of sedation for sweet baby.  Yesterday's problems were caused by a nurse giving him a paralytic on top of extra sedation meds.  This morming he was oversedated again.  I feel bad for these new nurses to the PICU, as one told me they get no orientation.  The ones who usually work this unit are awesome, but the new ones are learning the protocols as they go. Seems to make them very nervous when dealing with Elijah.  Last night I was able to stop the paralytic from being given again, but another was given before I could say anything.  My goal is not to tell them how to do their job, but to give background to avoid what isn't working.   This truly is the practice of medicine.

When through fiery trials our pathway shall lie
My grace all-sufficient shall be your supply
The flame shall not hurt you it's only design
Your dross to consume and your gold to refine

1:00 pm
Elijah is getting a picc line tomorrow and that requires an in-room surgical procedure.  It's an IV line that is for long term use as it goes directly to the heart. The phrase long term is just beginning to sink in.

11:00 pm
Elijah is resting comfortably.  His sedation seems to correct at the moment.  No improvement on lungs yet, but that is expected.  Tests show that this is viral pneumonia, so they can stop the antibiotics for now.  The heart ultrasounds will resume when he is off the ventilator.  They want to do surgery to close to his open heart PDA.  Optimally, they want it done within 6-8 weeks of healing from this episode.  However, if he continues to have trouble oxygenating his blood, the surgery may be done here while he is still sick.

The soul that on Jesus has leaned for repose
I will not, I will not desert to his foes
That soul though all hell should endeavor to shake
I’ll never no never, no never forsake

Sunday, April 27, 7:30am
Happy 9 month birthday Elijah!  You remain a joy through the trials and through the tears of watching you struggle and fight for life.  Sweet baby must be sedated to keep him comfortable and quiet while on the ventilator.  It is a fine line to find the spot that is right for him.  However, this morning around 4 am, he was over-medicated and stopped breathing on his own (the vent breathes for him, but he can still breathe on his own).  When he stops breathing on his own, his blood oxygen levels drop, quickly.  And they bag him.  Ever since NICU the bag scares me.  (You have seen it before on shows when they are trying to revive someone.  It provides oxygen at a higher pressure into the lungs.)  This morning he was bagged.  Several times.  I thank God for adrenaline as this is not for the faint of heart.

When through the deep waters I call you to go
The rivers of sorrow shall not overflow
For I will be with you, your troubles to bless
And sanctify to you Your deepest distress


Saturday, April 26, 11pm
Elijah requires a higher level of sedatives.  Today he wanted to roll and squirm, so they knocked him out more.  No more opening his eyes and looking around.  His lungs look worse today and dr.said that's what he expected.

Fear not I am with you, oh be not dismayed
For I am your God and will still give you aid
I’ll strengthen you help you and cause you to stand
Upheld by My righteous, Omnipotent hand

Friday, April 25. 11:00 am
They are trying to wean Elijah off the NO2.  He is being put on BPAP to hopefully avoid sedated intubation.  My heart cries out for the Lord to not need sweet baby sedated. He coughs alot.  They stick long flexible tubes down his nose and throat to suction him.  His lungs have a lot of fluid and they are trying to figure out why.  Echocardiogram every day.  Chest x-rays every day.   Regular blood draws. Constant machines beeping and alarming.  Continuous flow of medical personnel in and out of the room day and night. But we rest in the Lord.

9 pm
This afternoon, after being put on BPAP for less than 30 minutes, Elijah's O2 crashed to 44.  He was then put on sedated intubation.  He is resting peacefully now.  Occasionally he will wake, open his eyes, and stir a little.  But not much.  He has restraints on his arms so he will not pull out the tubing.  As his blood gases allow, they will try to wean off O2, it's at 70.  Also started antibiotics just in case it's bacterial, but they are thinking viral.  The second iv is in his leg as sweet baby has some rolly polly veins that are difficult to get in to and the foot iv was no longer good.  We spoke with all sorts of Dr.s today, including a pulmonary hypertension specialist.  We have a long road ahead, but they expect a full recovery.  But they also encouraged  us to pray as He is greater than they.

How firm a foundation you saints of the Lord
Is laid for your faith in His excellent Word
What more can He say than to you He has said?
To you who for refuge to Jesus have fled

Thursday, April 24
I.hate.pulmonary.hypertension.  Really, really hate it.

Elijah has been admitted to Texas Children's in respiratory distress.  We are now in the pediatric ICU (PICU).  Looks like he has a viral infection and pneumonia.  Sweet baby is such a fighter.  We anticipate being here a while.  Sweet baby got his first ambulance ride last night.  He liked the firemen.  Never thought I would be rushing my child to the same station his grandfather worked at for many years.

And I never thought we would be battling PHN again.

I lift my eyes unto the hills.  Where does my help come from?  My help comes from the Lord, the Maker of Heaven and earth.

Thursday, May 1, 2014

Grandpa

May 7, 1939 - May 1, 2014
He influenced our lives in countless ways.  He was a friend to everyone.  His greatest joys were his grandchildren.  As we were talking this past week, some of his last words to the children were,
 "Do good to people, no matter how they treat you.  Just do good.  It'll make it's way back to you." 
Precious in the sight of the Lord is the death of His saints.  Psalm 116:15

Friday, March 28, 2014

Elijah is 8 Months Old

Joy!  Joy!  Indescribable Joy!
Elijah is a happy baby!  He loves to play, smile, laugh and blow raspberries!  
He is now eating by mouth several times a day, although he is still tube-fed twice a day.  He will take a bottle with a little juice but not with formula (can't say I blame him, that stuff is nasty!).  We would really like to get him taking more liquids so the tube feeding can be history.  He is rolling over both ways and loves to watch his siblings.  He still gets rather car sick, so he usually sticks close to home.  Physical and occupational therapy is three days a week, and still no speech path.  He has hearing aids for both ears, but they never fit.  He gets fitted, two weeks later the molds come in, and he has outgrown them.  Then he gets fitted and two weeks later, same thing.  Rather frustrating.  But it doesn't seem to bother Sweet Baby! 
Thank you for your continued prayers.