"Begin today and write in it your goings and comings, your deepest thoughts, your achievements and your failures, your associations and your triumphs, your impressions and your testimonies. I promise you that if you will keep your journals and records, they will indeed be a source of great inspiration to you, each other, your children, your grand-children and others throughout the generations. Remember, the Savior chastised those who failed to record important events." --President Spencer W. Kimball

November 8, 2011

Progress.....or not??

I've hesitated on whether I should write this blog post yet, or if I should wait it out a little longer.  I just don't want to jinx anything.
As you know, they were able to extubate (take her breathing tube out) on November 4th, that was 4 days ago.  Our goal is to keep her extubated...we don't want them to have to put her back on the ventilator, but that requires a lot from her.  Basically we went from helping her breathe to telling her that she had to do it all on her own.  Of course they put her on a ventilator that had a back up rate to help her if she needed it, but pretty much we're expecting her to do it on her own.  I'm so proud of her, she's be doing amazingly good, and it just breaks my heart to see how hard she has to work to do something that comes so naturally to everyone else. 

She's did awesome for the first day, and then she started having little issues here and there.  The nurses just kept telling me that it was just her being a preemie, and that it was normal.  The bubble CPAP has small prongs that go in her nose, but the ventilator kept alarming because she was keeping her mouth open and the oxygen was going straight in her nose and out her mouth instead of getting to her lungs.  They had to make a chin strap to wrap around her head to try and keep her mouth shut.....that, in addition to the big old hat and tubes going over her head....we almost couldn't even see her little face! :(  She started having ABD's, and having them too often.  ABD stands for Apnea Brady Desaturations....what it means is there are times when she is sleeping and she forgets to breath, or maybe she's just exhausted and stops breathing, and as a result of it her heart rate drops and that causes her oxygen saturation levels to drop way down.  These are normal for babies who were born super early, but the hope is that they will catch themselves most of the time, and that their brains can send a message to their little bodies that help them resolve it and start breathing again on their own, with only a few interventions from the nurse.  Katea was having a lot...some of them she would resolve on her own, and some of them she couldn't.  8 times in one night the nurse would have to go in and rub her pretty hard and wiggle her little body to wake her up and remind her to breathe.  It's so scary to see.  I was in the room last night when she had one of her spells, the nurse was rubbing her and wiggling her and patting her back....and I stood there and watched the monitor as her heart rate and her saturations plumeted.  The nurse had to stimulate her for like a whole minute before she actually woke up and started breathing.  That was so scary for me to watch, because basically she was dying and it took that long for the nurse to revive her.  I started crying.  It just breaks my heart to see her going through so much....I would give anything to carry the pain for her.

She was having so many of those spells that they were actually going to reintubate her a couple days ago, but they decided to try another form of ventilation, the nasal IMV.  This one still has prongs that go in the nose, but they are a lot longer and it forces the oxygen to go down into her lungs.....basically, she's intubated through her nose instead of down her throat.  She did not tolerate that mode of ventilation at all.  The nurses think the prongs that went down her nose were too long and they were affecting her gag reflexes, which in turn caused her heart to drop....so that was just adding more brady desaturations even if she didn't stop breathing.  Again, they were going to reintubate her and put her back on the ventilator, but the NNP wanted to try the bubble CPAP again.  They switched her back again and she did ok for a little bit, but the same problems started happening again.  One last stitch effort to keep her off the ventilator was to switch back to the nasal IMV, but to cut the prongs to make them shorter so they don't make her gag.  She's been on that form of ventilation since yesterday and so far it's working better than the other ways.  She still suffers from the ABD's but they are not as severe and not as many.

The nurse practicioner and neonatalogist came to her room last night to talk with me.  They were telling me that she's right on the border of having to go back on the ventilator, which they really don't want.  She had been doing so well, and not requiring a lot of oxygen....but that changed.  Last night her heart rate skyrocketed, it was above 210, which is dangerously high.  Her normal heart rate is between the 150-160's....so for it to be over 200 meant something was wrong.  The problem is that it could be so many different things.  Her heart rate could be high because she's aggitated, it could be because she's hot, it could be because of her medications.....so many different things could be the cause of it, but all we knew is we needed to find out what was causing it because it wasn't good for her little heart.  They told me that if we work out or get anxious or upset, our heart rate goes up.....that's a normal reaction, but for it to stay that high for long periods of time is so bad....it's like a constant workout that she doesn't need.  The effects of that showed in her measurements this week....she didn't grow in length or in weight :( she was burning so many calories with her high heart rate and working so hard to breathe that she didn't gain weight.  In addition to all these issues she was having, her oxygen needs increased.  At first she only needed like 26-30%.....today she's getting 41%.  When they first took her off the ventilator, she was getting 20 breaths from the machine....they had to go up to 30 breaths yesterday.....and today it's giving her 40 breaths per minute.  Just a sign that she's so tired from working so hard and that she needs a little more help.

Honestly, I'm so extremely proud of her.  All these complications are setbacks, but she's amazing and she's trying so hard.  One of the RT's we spoke with told us that pretty much all babies fail the first time they get extubated......but that the second or third trys are successful.  He told us that if she has to get reintubated, not to take it too hard, because it's kind of expected....and if she's able to stay off the ventilator on the first try, that we needed to count our blessings.  I have such mixed feelings about this whole thing....I know it's not good for her lungs to go back on the ventilator....but at the same time, I want to give her a break.  She's already done an amazing job since she's been off the ventilator....she's lasted 4 days!  I hope and pray that they'll be able to figure out what's making her heart rate so high, and how to lessen her ABD events.  So she'll be able to continue breathing and getting oxygenated without the ventilator and breathing tube down her throat.

One of the main reasons why they haven't put her back on the ventilator is because her blood gases are perfect.  That means her body is taking in and getting rid of the the oxygen and CO2 like it should be.  So besides all the setbacks, her little body is doing what it's supposed to be doing with the oxygen it's getting!  I can't say it enough, she's amazing!

This is the newest mode of ventilation, with the prongs in her nose.  The nasal IMV...she still has to wear the chin strap to keep her mouth closed.

Another interesting thing I learned was that most of SIDS cases are just episodes of ABD that went undetected and didn't get resolved in time.  It's not common for full-term babies to have these ABD episodes, but they can happen.  In preemies it's very common and they forewarned me that I most likely, when the time comes, will have to take her home with oxygen and an apnea monitor for the first several months to years of her life.  How scary!


Aki said...

I'm learning so much from you Monica.....in more ways than one. I love you baby Katea!! Your doing amazing!!!

Kalani said...

Oh, Monica, I can only imagine what you're going through with all of the breathing and heart rate stuff. My girls are on apnea monitors and will have them for the next 6-9 months, and it still scares the heck out of me every time one of their alarms goes off, even though they've been self-resolving for weeks! I remember how terrifying it was when they required stimulation. Love to you and your little fighter, and prayers that she continues to get stronger and healthier quickly!


OMG Monica this post made me so worried and terrified. I can't even imagine. I feel so sorry for Tea fighting this hard, but at the same time I'm so proud of her for fighting to stay alive. She truly is inspiring! & the nurses there, just make me want to hug them and give them millions of dollars for the time and effort they put in, truly miracle workers! I love u and I hope and pray she will overcome this..I will be praying for her to breathe easy, and that she will get a break. :) Much love to you Katea, keep up the will power!!