"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

December 22, 2011

Slowly but Surely

I got a call on Sunday while I was at church, from the NNP.  She just wanted to call and give me the updates on my baby Katea and to let me know what changes they had made and what the plan was for the upcoming days.  She told me that Katea has been doing so good.  They decided in rounds that they were going to turn her oxygen down 1/2 liter the next day(Monday)....and then another 1/2 liter every few days as she tolerated it.  And hopefully within the next week or so, she'd get down to 2 liters and we'd get to start breastfeeding.  She also told me that they were going to do a follow-up chest x-ray to check the PDA in her heart, and they were going to do some growth labs, just to make sure her body was functioning properly and that her blood levels were good.  They scheduled to do all those things next week, on the 29th of December.  I was excited of the thought of her progressing....but at the same time, I was a little surprised that they all the sudden changed the plans and decided to try and move a little faster than we had been.  Especially since baby Katea DOES NOT like to move fast, and she doesn't tolerate it very well.  I found out that Dr. Melleske's two weeks were up and that it was a new neonatologist on for the next two weeks.  When I went to the last rounds, they told me that that would be something that would frustrate me.....just how differently everyone practices.  Everyone is excellent at their jobs, but they all approach things a little differently.  To be honest, I was a little worried when I heard they were going to start moving a little faster and weining her oxygen quicker than we had been, but things have actually been ok and I'm even more grateful for baby's primary nurses who spoke up and let them know what is best for Katea, afterall, they know her the better than anyone because they work with her all the time!
Sunday night when I got to the hospital, Meredith was there!  Yay!  We love it when one of our primary nurses are there taking care of her.....Baby Katea had some visitors that night, and she got a lot of loves from her uncles and auntys!  First, Sau and Suliana stopped by to see her.....they haven't been in for a while and they were so surprised at how much she had grown, and how big she was.  They were so excited that they finally got to hold her too!  She had quite a big scare while they were there, she brady'd and de-sat'd and it lasted quite a while.  She didn't take long to get her heart rate back up, but it took a good 3 minutes to get her saturations up and her color back to normal.  When she has those episodes, you can totally see it in her skin color....she goes greyish and her lips turn purple...it's pretty scary to see!   When that happens, we just have to stimulater her....move her around, rub her back, pat her bum....do whatever we can to get her to take a deep breath and start breathing again....I imagine it was pretty scary for Sau and Suliana, but they handled it well and didn't freak out!

After they left, Kina and Tina stopped by to visit.  They had just gotten out of a meeting and wanted to come and see her.  They have been so supportive with everything throughout this whole ordeal, and we're grateful for them.  They too were surprised at how big she had gotten...and they were so excited to finally be able to hold her.  Baby Katea didn't have any bradicardiac episodes while they were there, but she did de-sat a few times and it took a while for her to come out of it.  I just kept saying...."and that's why she's still in here....she's so not ready to go home yet." 

After they left, I stayed for a while longer......baby didn't have a good night at all.  She was yo-yo'ing a lot on her oxygen saturations and her Fi02 was a lot higher than her norm.  She was being a naughty girl!  She kept swallowing and coughing....and after she'd cough she'd hold her breath and that's what would cause the desaturations.  She was having reflux.  Meredith tried moving her feeding pump time from an hour to an hour and a half, and that seemed to be helping.  That meant pumping her food directly into her stomach over 90 minutes....when they would like her to be getting it in 30.  She's the boss!  She'd never had an issue with reflux(heartburn) before.....but they did increase her feeding again this week, by 4ml.  So from 40ml to 44ml every 3 hours.  Maybe that 4ml was just enough to cause the reflux.  Who knows?!  They also figured out that she can't be vented right after her feedings.  Usually after feedings when all the milk has been pumped into her stomach, they vent the tube....to help her get out any air bubbles that might be in her stomach....it's just a way to let her burp.  Since the tube is directly in her stomach....she moves around and it sends the air out of her stomach through the tube and into the little syringe that's venting her....it actually makes a burping sound as the air comes out of her stomach, it's pretty crazy!  And she always has air!  They used to vent her right after her feedings, because that's what most babies need, but she's different and can't handle it.  If she's vented right after, she'll push all the food back out the tube and she doesn't tolerate it being re-fed to her....so we don't vent her.  Meredith just watched her really closely that night. 

Monday when I got there, I was told that baby continued to have a horrible night.  So Meredith suggested to the NNP not to wein her oxygen down that 1/2 liter they were planning.  They agreed and just kept her where she was and watched her closely.  Stacey, another one of her primary's was there on Monday morning.  She said that baby had actually been really good for her.  She was awake a lot during the morning so she had her out of her crib and was playing with her and doing her exercises.  I was so glad to hear that she was having a better day!  Monday night Meredith was back......she started being naughty again that night.  She did have another bradicardic episode that she required help resolving, she's been having at least one a day for a few days now.  When I was holding her, I kept hearing a watery sound and I didn't know what it was....I thought that maybe some of the humidity from the high flow drained into her nose and she was choking on the moisture (because that is a real risk) but Meredith suctioned her little nose and didn't get anything at all.  She was just still choking and gagging and fighting to keep her food down....that darn reflux :-(  Needless to say, she yo-yo'd quite a bit with her oxygen saturations because of the reflux that night again.  They could give her some medications like prilosec or zantac or something like that, but they're really trying not to because even though those types of medications work really well, they mess with the pH of the stomach....and we don't want to do that.  So far she's been clear of NEC, and we don't want to do anything that might cause it.  So my poor baby has to suffer through the darn heartburn... :-(

Even though they had scheduled to do the chest x-ray and the growth labs on the 29th, they ended up doing them on Tuesday.  Since there had been such a drastic change in her oxygen needs and stability, they wanted to make sure she wasn't getting sick.  The chest x-ray came back good.  No swelling or pressure.....sometimes such severe lung disease and respiratory distress can cause strain on the heart, but her heart looked great!  The PDA was still open, but they told me it was a tiny hole....so small that it couldn't be affecting her breathing....and they were pretty confident that it would close on it's own.  That was great news!  The labs all came back perfect as well....it didn't show any signs of infection, or any indicaiton that she was getting sick.  So with those results, they were able to cross-out a lot of possibilities or reasons for her yo-yo'ing.....and it's just back to reflux and her lung disease.  She had a rough time right before I left, just gagging and coughing....causing her to de-sat....so we put her in her bouncer chair and she finally calmed down and went to sleep.  The chair sits her up high enough that maybe it doesn't let the food come back up to her throat, causing her to gag....she stayed there and slept in her bouncer, and then I left.

Today(Wednesday) when I got there, she had just gotten her eye-exam.  The results were not really what we wanted to hear.  She's still at a zone 2, which meant her eyes are not developed.....and her ROP(retinopathy of prematurity) had gone from a stage 1 to a stage 2 in her right eye.  That was not good.....the higher the stage of ROP, the more damage is done to the retina and the developing blood vessels.  The optimologist said that it was still mild, but they're going to watch it closely.  Stage 3 is where they start to worry a lot, and stage 4 means blindness.  The thing about that is that oxygen is what affects the ROP....high levels of oxygen cause more increased levels of ROP.  Baby Katea has been on oxygen for almost 3 months now and with every wein of her oxygen pressure....her Fi02 goes up.  The higher the Fi02, the more damage could be done.  It's a visious circle.  Now we really can't wein her oxygen until her Fi02 comes down quite a bit....especially since she's been sitting between 33-39%.  Patience, patience, patience and prayers are what we need!

Other than the reflux, the progression of ROP in her right eye, and her bradicardic episodes....she's doing extremely well.  She's growing like crazy, weighing 5lbs.11oz. today.  I bet she'll hit the 6lb. mark by Christmas....that'll be exciting!  Whenever I feel like I start to get burnt out or frustrated, I just think of how lucky I am that she's alive....she has no brain bleeds...she has no heart problems....she's only on 2 medications right now, and they're not even really medications....she's getting a multivitamin and iron.  They've stopped her hydrocortizone and her caffiene and she's doing great.  The only thing she's struggling with is her lungs and her eyes.....and those will develop eventually....on her time.  We just have to keep on waiting and being patient....and counting our many blessings!  Come on baby Katea, we love you....we're so proud of you for the amazing progress you've made....and we'll keep praying for you!  We understand that everything will happen in your time.....but can you hurry up please!  haha :-) 
All this breathing is making me so tired! 

1 comment:

Paula said...

GAH! Eye maturity and ROP were our nemesis in the NICU. Callen was there 3 weeks longer than he could have been because of eye maturity and oxygen needs. He was down to 1/8 liter of flow and his fi02 was 21%. Because he needed that tiny bit of flow and home oxygen can't be blended we sat there and waited. I'm so glad he was able to come home without oxygen. It was worth the extra few weeks. Just remember that once Katea is off oxygen her eyes will be able to mature faster and at stage 2 ROP it can heal on its own. Callen was zone 2 stage 2 forever! As of last week his eyes are fully mature and the ROP is gone. We will continue to keep you all in our prayers.