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Saturday Morning – Turning One Last Stone

AUTHOR: | POSTED: 11/22/14 9:54 AM
CATEGORIES: Blog

Thank you so much to everyone who answered our call for thoughts and prayers yesterday.  They worked.  The stridor is gone and Nicholas didn’t have to be intubated.  Last night was a little rough because he wasn’t allowed to nurse.  The doctors wanted his tummy empty in case he did need to be re-intubated.

He’s eating now.  Albeit through a gavage tube—I don’t think he cares.  He’s not hungry any more.

Now that yesterday’s swollen airways are on the mend we turned our attention back to the original problem of randomly collapsing lung lobes.  Unfortunately, this morning’s chest Xray revealed a collapsed upper right lobe which was the original problem that landed us here.

Ugh.

Sean and I informed the neonatology and pulmonary team on Thursday night that if after extubation the lung problem re-emerged we would need to move Nicholas to Cincinnati Children’s (one of the premiere pediatric pulmonary hospitals in the country).  After this morning’s Xray they offered to flip one more diagnostic stone before we go.

Nicholas is currently on call for a chest CT angio with contrast.  They are looking to rule out an errant blood vessel running off of the aorta that may be placing unnecessary pressure on the upper lobe of his right lung OR a malformed bronchial tube that is not allowing air to flow to his upper right lobe.  If they find no structural abnormalities they will facilitate the transport for us…hopefully…later today.

If they do find an abnormality–well–we will cross that bridge if and when we have to.

You all, I cannot express how unsettled we are.  There is a lot of unknown in our immediate future not to mention the possible logistical nightmare of tending to a critically ill child hours from our home and our other five.  They all have needs and our older four are getting theirs met by people other than their parents.

It’s amazing how mom guilt can be so devastating.

Sean and I continue to be thankful for the help of my mother, his mother, our old babysitter, Valerie; our new baby sitter, Erica; and our family and friends who are on call for whatever we need.  It’s comforting to know we have help.

As always, please continue to hold Nicholas in your prayers.  He is comfortable this morning and for that, we are grateful.

Oh…and I will update our Facebook page later this afternoon when we have the results.

*****

Drew was able to meet his little brother last night.  It was a special moment.

Our alpha and our omega.  (During "No Shave November")

Our alpha and our omega. (During “No Shave November” no less.)

 

 

Friday Morning Update…Looking for Some Urgent Prayers

AUTHOR: | POSTED: 11/21/14 11:12 AM
CATEGORIES: Blog

Nicholas was extubated this morning after his chest xray showed an almost  complete recovery in his lungs.  But, as we are learning one delicate medical situation can often lead to another.   It appears Nicholas’ airway is quite swollen due to irritation from being intubatedtubated.  He is wheezing like he has a monstrous case of the croup.  He has been placed on an aggressive steroid to bring down the swelling in his airway.

Please pray that this works.  He is really struggling and if it doesn he will need to be re-intubated.

More in a few hours.

 

An Update and A Moment of Levity

AUTHOR: | POSTED: 11/20/14 9:36 PM
CATEGORIES: Blog

First Sean and I want to continue to thank everyone for their continued thoughts and prayers.

Nicholas’ chest xray this afternoon indicated significant improvement.  We expected that would be the case given his current state of intubation and direct tracheal therapy.  I will tell you that watching your child struggle with being on a ventilator is a special kind of torture.  He gagged a lot on the tubes last night, but as the day progressed I think he became more accustomed to the feeling of the tubes going down the back of the throat.  (The feeding tube –gavage tube–is also threaded through his nose and down the back of his throat.  No fun.)

Did you know that an intubated baby cries silently?  You can see them crying but there is no sound.  Think silent scream.  It’s a sight I could have lived the rest of my life never seeing again.  (Ryan was intubated for eleven days following his premature delivery in 1997.  Even though we’ve been here done this it is still very, very difficult.)

Regardless, we are grateful that Nicholas seems a little more peaceful tonight.

Although his chest xray was improved, the pulmonologists agreed it would be better to keep him intubated for at least one more day.  I think they are hoping to slam dunk a recovery.  Sean and I agree.  The last thing we want is to extubate him only to have to intubate him again because he wasn’t quite where he needed to be.

Tomorrow the pulmonologist will rescope his airways to have a second look for reassurance.  The findings from that exam combined with the results of a chest xray scheduled for early Friday morning will help the doctors determine if he can come off the ventilator tomorrow.

Sean and I are very leary of the forty eight hours following extubation.  We are hoping and praying that this treatment worked, but in the back of our minds we are fearful that it’s been merely some sort of band aid.  If Nicholas comes off the vent and continues to improve we will be on our knees with gratitude.  If Nicholas comes off the vent and his pulmonary condition diminishes we will be on our knees in prayer…and most likely on our phones arranging a move to a more specialized pediatric pulmonary facility.

We would prefer the more positive outcome.

So, if you are the praying type please pray for continued improvement.  I will let all of you know as soon as I know what our treatment plan is for tomorrow so you can join us in praying for a way out of this.

*****

A moment of levity…

I know many of you are new to this blog.  Usually the content is a little less dramatic and a little more fun.  One thing Sean and I learned during our IVF mix up ordeal is to look for humor, smiles and moments of laughter even when things are at their darkest.

In short, humor has probably saved our sanity more than once.

Case in point, today I was having some problems pumping.  You see, Nicholas cannot nurse while he is intubated so I have to pump the breast milk in order to keep my supply going.  This morning one of my boobs took a temporary time out.  I have no idea why but it just flat stopped working.  And when I say flat…I actually mean the opposite.  There was nothing flat going on in my physique today…except it was only on one side.

Think cyclops.

Anyways, I consulted with two lactations consultants in hopes of finding a solution when one of them, in an attempt to rule out a breast infection asked me…

LC –  Have you been cleaning your parts?

Me -  (Confused) Uh…yes.  I mean… I’ve been taking showers.

LC – (Laughing.)  Not THOSE parts.  The parts to your breast pump.

Me –  I REALLY need to get some sleep.

The lactation consultant agreed.

*****

Resting peacefully tonight.

Resting peacefully tonight.

Update…and A Little Something about His Name.

AUTHOR: | POSTED: 11/19/14 5:28 PM
CATEGORIES: Blog

Thank you all for your prayers and support.  I think they are working.

Nicholas tolerated the procedure like a champ.  The pulmonologist who performed the broncoscopy was quite impressed with his strength.

Here’s what we learned today…

  • There are no physical malformations or abnormalities with Nicholas’ airways, lungs or esophagus.  That’s good news.
  • There are no signs of infection in his lungs.  The fluid they were able to suction was crystal clear.  (We kind of already knew this as there has been no indication of infection in his blood work. They are culturing it anyways.)  Also, good news.

It is still the opinion of our pulmonologist that Nicholas’ troubles are a result of not fully eliminating the fluid from Nicholas’ lungs during the birthing process.

To treat the lungs more efficiently Nicholas is currently intubated and on a ventilator.  The purpose of the ventilator is to help him fully expand both of his lungs allowing air to move freely, thus drying them out.  In addition, by helping Nicholas inflate his lungs the aerosol medications will be better able to reach the parts of the lung that had been previously collapsed.

Nicholas is being fed through a gavage tube (tube up his nose and down to his tummy) while he is on the vent.

Tomorrow his chest xrays will be repeated at noon.  We are expecting to see massive improvement.  If his condition is improved he will be able to come off of the vent.  If not?  Well…one day at a time.

Please pray for him.

*****

About His Name…
Sean and I really struggled with a name for our boy.  Then, a few weeks ago, I caught an update about Sir Nicholas Winton on 60 Minutes.  Sean and I were both moved by his story.

In short…

Sir Nicholas Winton is a British humanitarian who organized the rescue of 669, mostly Jewish, children from Nazi-occupied Czechoslovakia on the eve of the Second World War, in an operation later known as the Czech Kindertransport.   Winton found homes for the children and arranged for their safe passage to Britain and he did so by utilizing a monstrous dose of determination.   (Wikipedia)

When Sean and I orginally learned about Sir Nicholas and what he had done we were incredibly inspired.  We can only hope that our Nicholas Winton will grow up to become as principled and compassionate.

Plus…it fit.

We both have a soft spot for people who save children.

 

*****

Thank you again for all of your prayers.  More tomorrow.

Peace to all of you.

Nicholas after this afternoon's procedure.

Nicholas after this afternoon’s procedure.

 

 

Urgent Prayer Request….Again.

AUTHOR: | POSTED: 11/19/14 11:03 AM
CATEGORIES: Blog

Nicholas’ chest xray this morning was worse.  Complicating matters there is now left lung involvement.  (Up until now the problematic areas of collapse  had been limited to the upper and middle lobes of his RIGHT lung.)

He is undergoing a broncoscopy between 2-4 this afternoon.  It also appears it is likely he will be intubated and placed on a ventilator 24 to 36 hours following the procedure.  He will be sedated during the broncoscopy and will most likely need to be sedated during his intubation period.  (He’s kind of a spunky kid who without sedation would probably give extubating himself his best college try.)

I just stood at his bedside and watched them place a new IV in him for the procedure.  They were giving him sucrose (sugar water) to release endorphins to help with the pain  and I was helping him suck on his binky while they stuck him. Remember how I wrote I was fighting the instinct to grab my baby and run from the room?

Yes.  That.

We are hoping for some answers as a result of this procedure.  Is it some sort of crazy virus that isn’t responding to the antibiotics?  Is it a malformation of his larnyx that is somehow allowing breast milk into his lungs while he feeds?  Is it a genetic disorder of some sort?

An answer would be nice.  A safe route through this procedure is what we are praying for today.

Please join us.

Thank you.

*****

From last night…wide awake and kind of wondering “What the heck?”