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Friday, July 28, 2006

 DAY 121

TURNAROUND

No

BIG TURNAROUND

No

HUGE TURNAROUND

Today marked a huge turnaround in what has been an extremely slow and worrisome recovery from surgery 7 days ago.  Today, Alyssa's blood gas levels were the best ever!   She was holding her own body temperature right where it should be.  Her saturation levels were staying very high.  And this is how the milestone day went…………

8:00 AM - Alyssa on the High Frequency Oscillating Ventilator

8:15 AM - High Frequency Oscillating Ventilator without Alyssa:

8:30 AM - Alyssa on a traditional ventilator  

12:00 PM - Heidi holding Alyssa for the first time since surgery

1:00 PM - Alyssa being very alert and happy

9:00 PM - Alyssa with only a Nasal Canula

Today was a milestone day for Alyssa.

Praise God from whom all blessings flow

Wednesday, July 26, 2006

 DAY 119

STILL FEISTY

Yesterday was a very long day for Jim and Heidi.  They didn't leave the NICU until almost midnight.  Alyssa was wide-awake and not liking the HFOV tube at all!   She didn't have a look of pain, nor was she crying.  But she was determined to extubate herself.  The only way to calm her down was to place one hand on her head and one hand on her hand closest to the tube.   That's what Jim and Heidi did until Alyssa finally went to sleep and they, in return, could leave the NICU for the Ronald McDonald House to get some needed rest.

About 30 minutes later, the nurse called them at their room to tell them that Alyssa pulled out the tube and that they had to re-intubate her!

During the early morning hours, they gave her a drug to calm her down.  They also had to increase the oxygen setting from 32% to 72% to keep her saturation levels up, and the HFOV frequency was increased to 600 breaths per minute.   NOT A GOOD MORNING.

I arrived at the NICU around 9:30 AM, just in time to hear the Neonatologist's discussion with Jim and Heidi.  He was telling them that he was going to send a vile of Alyssa's blood for a test to determine if her remaining adrenal gland was functioning adequately to compensate for the intense trauma that her body was going through.   If not, then he may want to give her a type of steroid to give her body a boost to deal with the stress.  He is consulting with an Endocrinologist on this.  They were also going to send some of her lung secretions (since they needed to suction her mouth and nose almost every 30 minutes) for a test to determine if she has any infections that were not showing up in her blood.   She is getting Albuteral to help reduce the fluids in her lungs and Lasex to help reduce the fluid retention in her body.  Doctor Antune is also considering giving her another blood transfusion tonight.  

I usually set up the following day's e-mail format ahead of time.  For today, I typed in the headline: "TURNAROUND".  I was praying that I would truly see it and be able to use it for today.   But, even though we are not at a point that I could really use those words, I did witness some improvement in her condition during the day that I spent with Heidi, Jim, and Alyssa.  I was amazed at just how "feisty" she still is!

Alyssa was awake from 10:00 to 12:00 and once again attempting to move her body in any way possible to get the tube removed.  As was the case the night before, if someone had both hands on her, she was fine.   So Jim, Heidi, and I took turns gently touching her.

As you placed your left hand over her head and stroked her temple with your thumb, she would hold on to your little finger with her right hand.   Your right hand would be placed on her back while she held on to your thumb with her left hand.  Her eyes looked about and occasionally she would smile.  If she closed her eyes for a moment and you moved, one eye would open up to see if you were still there.   That was the routine and we all enjoyed it.  

Maggie, the primary nurse assigned to Alyssa, saw our efforts and how successful they were.  But knowing that you can't do this for 24 hours a day, she ordered a "Froggy" from the Physical Therapy Department.   A "Froggy" is a large cloth mitten with weighted beads in it that you can place on a baby to give the added security that is needed.  One was sent up and we were able to make the transition as soon as she fell asleep.   Hopefully, this will work tonight!

I needed that special time with Alyssa today and God blessed me.

Lord, we thank you for the many little signs that we are able to witness in Alyssa – signs that help to assure us that she is going to be OK.   We pray that each day now, we will see further improvement and evidence of Your healing hand upon her.  In Jesus' name, Amen.

Sunday, July 23, 2006

 DAY 116

STABLE CONDITION

Alyssa is in stable condition and remains on the High Frequency Oscillating Ventilator.  During the early morning hours, the nurse heard her cry because she had extubated herself (as she often has done in the past).  But this time, they couldn't leave it out – she needs it to live.  Her blood gases (CO2 and O2) are just OK – not bad, but not good.  They gave her a little more morphine to relax her and she went back to sleep.   This type of ventilator is very uncomfortable for babies because the frequency is not natural (over 300 mini-breaths a minute).  If a baby begins to fight it, they often times will give a drug that will temporary paralyze them.   We are praying that the morphine doses will keep her relaxed enough so she doesn't need that!

Alyssa became somewhat alert and opened her eyes later that morning for Heidi and Jim.  But they said she had a terrified look on her face.   Fortunately, for most of the day, she has slept.  On the outside, her body and face have continued to swell.  On the inside, the X-rays showed that her lungs are increasing in capacity (only 3 ribs of space were filled yesterday, today she has 7 ribs of volume).

Dear Heavenly Father

We desperately need You

We need You to hear the cries of our prayer partners

We need You to comfort Jim and Heidi

We need You to heal Alyssa

Saturday, July 22, 2006

 DAY 115

FEELING HELPLESS

I waited for you today
But you didn't show,
I needed You today
So where did You go?
You told me to call
Said You'd be there
And though I haven't seen You
Are You still there?

I cried out with no reply
And I can't feel You by my side
So I'll hold tight to what I know
You're here and I'm never alone

We all felt so helpless today.  All we could do was to hold on to the knowledge that God promised to be with us always – that we are never alone.

At 2:00 AM on Saturday morning, Alyssa's carbon dioxide rates were rising to alarming levels.  She was on the verge of impending respiratory failure.  The swelling in her abdomen from the trauma of surgery (every inch of her intestines was pulled out and examined) was not allowing her lungs to expand.   The care team switched her to a High Frequency Oscillating Ventilator (HFOV) that would pump low volumes of oxygenated air into her lungs at a very high rate and remove the buildup of carbon dioxide. The high frequency made her entire body shake.   The swelling of her body was most evident in her head, turning her big eyes into little slits.

As we took turns today sitting near Alyssa, all we could do was watch and look for any sign at all of improvement.  God blessed Heidi and Jim on several occasions, as they would place their head near to her and softly call her name and she would briefly open her eyes.

And though I cannot see You
And I can't explain why
Such a deep, deep reassurance
You've placed in my life

We cannot separate
'Cause You're part of me
And though You're invisible
I'll trust the unseen

I cried out with no reply
And I can't feel You by my side
So I'll hold tight to what I know
You're here and I'm never alone

"Never Alone" Barlow Girl

All we can do is trust in Our Heavenly Father and continue to pray for a happy ending to this story.

Thursday, July 20, 2006

 DAY 113

OUR WORLD CAME CRASHING DOWN

Our world came crashing down upon us this morning.  At 7:00 AM I sent the e-mail that I have been longing to send for over 100 days, announcing that Alyssa was going home.   Kathie and I left for Dupont at 9:00 in our pick-up truck to go and get Jim and Heidi's belongings that had been accumulated at the Ronald McDonald House for the past three months.  We stopped off at Kathie's parents house about 5 minutes into the trip to drop off a copy of the e-mail for Day 112.   While Kathie was at their door, the song "Praise You In This Storm" came on the radio.  The song, as you know, has been one that we have been relating too through this whole journey.  But this morning, I had a very uneasy feeling come over me as I listened to it.  I didn't want to relate to it any longer!  When Kathie returned to the truck, I asked her to pray with me before we started off on the "joyous" trip once again.   Then, at 9:10 AM I received this text message from Heidi:

Not a good day

Not going home

Belly is big

X-ray tomorrow

Followed by Surgery

At 9:10 AM our world stopped!  Light turned to darkness, songs turned to silence, the wind became still, our minds emptied, and I felt forsaken by God.   I wept as I called Pastor Jeff to ask him to send out e-mails that cancelled out everything I had just written and sent.  The verse that I used to close my e-mail that morning, didn't seem to apply:

Those who know your name will trust in you,

for you, LORD, have never forsaken those who seek you.

for you, LORD, have never forsaken those who seek you.

for you, LORD, have never forsaken those who seek you.

for you, LORD, have never forsaken those who seek you.

It was one of the longest trips to Wilmington yet.  It seemed twice as far and three times as long to get there.  We got to the NICU just before 11:00 AM.   The look on Heidi and Jim's faces were devastating.

We want to get off of this roller coaster, but we can't. 

It was a totally different baby that we looked at today.  The photos from the day before vanished from our minds.  In less than 24 hours she went from looking like a real newborn to being a very lethargic baby that looked frail and sick.   She now had an IV in her head, a tube giving her oxygen taped to her face, a tube to her stomach to decompress the distention, and all the monitor leads once again attached to her body.

For most of the day, we just waited to hear the final plan of action.  We thought a lot about what had changed in the last two days that would have triggered this abrupt reaction.   The Neonatologist was receptive to all of our ideas and checked them all out, but we all came up empty.

As we left this evening to return home, the plan is to do surgery on Alyssa on Friday (she is on the "emergency add" OR schedule). They anticipate going in to remove a portion of her small intestine (where there appears to be a stricture) and, while she is opened up, they will remove the "unknown" mass on her adrenal gland.  They are considering also doing a bone marrow test while she is under the anesthetic.

Her body temperature is still running low.  She is a bit anemic (they are giving her a blood transfusion tonight in preparation for the surgery), and her bilirubin levels remain high. No explanation for why!

Please pray that everything goes well, and we can finally resolve the digestive and tumor issues once and for all. 

Those who know your name will trust in you,

for you, LORD, have never forsaken those who seek you.

for you, LORD, have never forsaken those who seek you.

for you, LORD, have never forsaken those who seek you.

for you, LORD, have never forsaken those who seek you.