Remy has not made any progress in the past two days.  There were some positives but no real progress.  She did produce about 37 cc’s of pee after 42 hours of nothing.  Picture a standard spice container you would get a supermarket, now hold you thumb and your index finger about an inch apart.   That is about how much she filled that container. It’s not a lot.  It was nice to see it at first, and enough to make us smile and feel excited.  But since yesterday there has been close to nothing again.

She is swollen today, very swollen.   Her hands and feet are more bloated than we have ever seen.  She has had to undergo several procedures.   Her chest tubes were moved a few times between yesterday and today.   After what the x-rays revealed, it was necessary.  These tubes move a lot, mainly because the air and fluid surrounding her lungs move.  If you tape a string on a windowsill it will just sit there.  If you open the window, the string is will blow around and sit in different positions, when the wind dies down.   Remy’s lungs are constantly changing condition.  One day the upper right lung will be collapsed, the next it will be the lower right.   Her left lung experiences hyperinflation, because it already functions okay but the oxygen she receives overcompensates.   She experiences acidosis when she does not get out as much carbon dioxide as she is producing.  This affects her acidity levels and is directly related to her kidneys, which are already functioning poorly.  She also gets Pneumothorax, which is when there is air outside of her lungs that needs to be inside of her lungs.  We desperately want to know that the air is inside her lungs, where it should be.  On top of all of this, every time she goes through a procedure of any sort her MAP’s (blood pressure levels) drop down immediately.  Following that, they can take all day to get back up to a desirable rate.

When her MAP’s reach the desirable rate of 39 and above that is when she usually pees.  Problem is, she requires so many procedures and disruptions, that it is a rare occasion her MAP’s can be kept at a steady rate that is pee conducive for her.  It’s like trying to drive a car when one tire is heading east, another west, another south, and another north.

One really great thing is that a cardio surgeon yesterday was able to insert two lines into Remy’s right and left Femoral arteries.  These are the arteries in her right and left groin area.  She is so swollen, so it was a big concern that he would even find them.   He aced it!  What he inserted was an A-Line (arterial line) and another I.V. line.  The A-line is great, because it serves two purposes.  It is used to constantly and accurately read her blood pressure (better than a standard cuff), while more importantly it can be used to drain blood straight from that line.  That means she does not have to get pricked with a needle throughout the day and go through that discomfort and stress. I estimated how many times her blood has been drawn in the last 44 days, based on an average of what I have witnessed.  My guess is about 500.  I take no joy in saying this, but I’m pretty sure I’m close.  The other line allowed us to remove an IV line from her wrist, which was there for quite a while, and was starting to show signs of distress.  We would love to be able to remove her picc line and try a new artery in her leg or somewhere else.   The picc line itself could be the source of infection.  It’s a long shot, yet a possibility.   This is too risky though. She is too swollen and trying to find somewhere to move it to is not practical right now.

Remy has been for the most part, immobile for the past two days.   No movement, no hand grips on Mommy and Daddy’s finger, no toes curls, and no tongue movement when we clean her lips.   It’s concerning and disheartening to witness!   We want a reaction from Remy.   It’s her M.O.  Yesterday, just prior to tapping in to her Femoral arteries I was holding her head and she experienced some heavy twitching.  This was not the movement I was hoping for.  They were most likely more seizures.  She had to be administered a heavy dose of Phenobarb, which also carries a barbiturate.   She had to be administered Vecuronium, a paralyzing agent, and prior to the procedure to ensure she wouldn’t move.   The after affects of the Vec and the continued Pehnobarb injections I’m sure are affecting her mobility even more.  Regardless, we are so anxious to get some sort of movement from her.  Anything!

Today she went trough some more stress.   Both of her chest tubes were removed, and a new one was put in to get some of the air out of her lung cavity, which was a positive thing.  However, it was still more stress on her.  She had to be extubated and re-intubated with a wider tube to help her saturation levels.  It was stressful to watch.

She is finally at rest now with no foreseen activity coming up for at least a few hours and hopefully through the night.   Her blood gases are good.  She received a blood transfusion today.  Her latest respiratory x-ray looked good.  We are hoping for her MAP’s to increase to about 40 or above and stay there.  From there we hope for lots of pee!

On another note we want to mention how even though these times are incredibly trying, we find comfort and kindness in the friends we have made here in the NICU so far.  It is amazing how close you can get to people so quickly, and how a trying situation can bring people together.  We saw our newfound friends Courtney and Avi leave the NICU yesterday with their little girl Charley, after 5 long months of watching their child go through hell and get better.   We miss them already and Mary will especially miss going to see their little girl.  Whenever Remy is having a trying time, Mary found so much comfort in going to see her.  Knowing she is home makes us know that someday we will get to go home too.  We deserve it and so does Remy.   The picture of the empty space at the top of this post is both a hope for us and a tribute to Charley.

6 thoughts on “Waiting

  1. Pete & Mary,
    I pray for Mary and send all positive thoughts your way. Stay strong and believe, she is a little fighter! One day hopefully soon the two survivors Ty and Remy can celebrate together! We love you guys and hope things turn around real soon for Remy! Love, Deb

  2. My heart aches for the nearly impossible few days your family has had, but pray, hope and know that it is all leading to a strong, healthy, baby Remy to take home. Remy is such a tough little fighter, I am in awe of her resilience and your love and devotion.

  3. Prayers to Remy for strength and to all of you to keep on fighting the fight! One day that will be your empty room at the top of this page! ❤ Light and Love<3 xoxo

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