"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

February 24, 2012

Aye, aye, aye.....HER EYES!!

When baby Katea left the NICU, her eyes weren't completely mature yet.  That hardly ever happens, espeically when they're going home on oxygen because high levels of oxygen can damage the blood vessels that attach to the retina and could cause blindness.  They went over with me before I went home, how important it was that I not let her high-sat, because the longer she high-sats, the more chance for damage.  I was comfortable with watching her saturations at home and making sure they stayed within the parameters that were safe....until her eyes could completely mature.

Being here at the hospital, I've been a nervous wreck about it.  She's been on extremely high levels of oxygen a lot, and it scares me.  In the ambulance ride from her pediatricians office to Primary's, they had her oxygen and 100%, and she was satting 100%....if she would dip lower than that even by 1%, they would turn it up more.  I was so nervous.  I explained to the EMT about her eyes and how she can't be on high levels of oxygen, and he wasn't too familiar with ROP, or the damages that could be caused by the oxygen, so he just kept it high because his main concern was to keep her saturations stable.  My heart was pounding the whole ambulance ride, nervous at the oxygen level....and that we had to go back to the hospital again.

When we got to the emergency room, I immediately explained to them the situation....they understood and changed the parameters of their monitor to beep if it went out of the range of 88-98%. 

When she was finally moved up to a room, I explained again....they changed the parameters of her monitor to beep, but with a different nurse every single day and them not used to having to deal with someone who can't have high levels of oxygen, she's definitely not monitored like she should be....and everytime she high sats, my heart drops.  She has to get albuterol treatments and when the nebulizer blows into her face, she's always at 100%.  Getting a treatment every 4 hourse meant she was on high levels of oxygen at least every 4 hours...and even some other times when she wasn't getting the treatment....that was WAY TOO MUCH!!  She was supposed to have her eye exam follow-up appointment on Tuesday, I didn't know what was going to happen since we were here in the hospital....but I thought that maybe, we could still keep the appointment since the eye-exam was supposed to be here anyway.  Not such luck :(  Their schedule was too full to come to her room to do the exam...so they rescheduled it for Thursday.  They said that if we were still here, they would come to her room...and if we were already discharged, to call and have them overbook him for that day to make sure she got seen.  I was so bummed that I had to wait another 2 days before getting her eyes checked, but what could I do??  Thursday came and I sat here waiting all day long.  Bright and early in the morning when I woke up, I asked them what time the optimologist would be here.  They said he didn't have a set time, that he would just come when he had a minute, but that he knew he was coming.  I waited patiently all day long.  At about 430pm, I asked them to please call and ask....there was only 30 minutes until their office closed and I was worried they weren't going to come.  Sure enough when the nurse called, they told her they didn't have time that day.  I lost it.  I totally cried and broke down like a crazy lady.  They told the nurse that they rescheduled it for Friday (which was today)  I think because of the big scene I made, they pushed it a little more than they had been, because bright at early at 7am, the optimologist was here in our room ready to do the exam.  Finally, I'd be able to not panic so much.  Praying and hoping he would just tell me that Yay!  Her eyes are mature...no need to worry about oxygen levels.....that's what I was hoping and praying....but that is NOT what happened.

The exam was super quick, and very invasive.  I never actually saw one done in the NICU because everyone advised against it.  I watched this one.  OMG, I can't even explain what they did to her poor little eyes.  It's crazy, and now I know why they advised me not to watch in when I was in the NICU.  The results were not what I wanted to hear.  Her ROP is back to stage 2, and now she's developed PLUS DISEASE.  He said that even though her ROP had gotten worse, he could see the blood vessels going through and almost reaching zone 3.  Not what I wanted to hear...because really, it's the same thing as when we left the NICU "almost zone 3"....except it's worse because now she's developed PLUS DISEASE.....uugghh, poor baby girl.

I did a google search on what plus disease is, because I really had no idea....and this is what I found:

Plus DiseaseAs ROP progresses, more and more shunting occurs in the neovascular tissue at the retinal vascular-avascular junction. This increased retinal vascular blood flow results in dilation and tortuosity of the major retinal arteries and veins in the posterior pole - a development described as "plus disease". For an eye to qualify as having plus disease, these vascular changes must be present in at least two of the four quadrants around the optic nerve.

So now, all my worries of the high oxygen levels were real.....her eyes are still bad, and we still have to watch her oxygen levels until her next eye exam which is in 2 more weeks.  :(


Christa said...

Oh so frustrating and I'm sorry you had to see that. I hope her eyes get better. There is nothing like having your baby look at you and say mama for the first time. I will be praying for you and her eyes. As far as the hospital. I had a few issues/complaints about one dr that was awful. The day pediatrition would say one thing and then the night one would come in and change everything and I was in tears. I demanded to speak with the high up people about it and it was so helpful, so if the nurses or dr's aren't helpful don't be afraid to complain. It sounds like you are sticking to your mothers intuition and I hope that things start looking up soon. And thanks for your previous comments. I will say that I think that visit helped me as much as it did you! It made my week and situation so much better. We had a good night at NICU parent group and I told everyone that you said HI! I complained that you never got a survival kit and we made cute scrapbook pages.

Jessi said...

I found your blog after you commented on the IMC March for Babies page. My daughter Quinn was born at 25 weeks, weighed a little less than a pound, and spent 130 days in the NICU. It sounds like you have great support, but if you need anything more let me know! My email is jessicarlson@gmail.com and my blog is http://www.thewhinesellers.blogspot.com/
If you want to see how things can look a year plus after the NICU. Good luck!

Allie Wadsworth said...

Monica I'm sorry you watched that! I watched Ivy's eye exams a few times and it was always so sad. As for the Plus Disease, Ivy has it. From what the ophthalmologist said to me, it means that at one point the ROP progressed quickly. It may not still be doing that, but at one point it was. If crying is what it takes to get that doctor up there, do it! Insist on the best care for Katea. You're her advocate and she deserves the amazing care she got at IMC. Insist on getting another eye exam this week. I think you'd feel better! Love you guys. We are always thinking of you!