Today was the big day.....the day of the eye exam.
I was a nervous wreck for some reason. I didn't really sleep all night. I don't usually go to sleep until the wee hours of the morning anyway, but last night was worse. It was 4am and I was still awake. Everyone in my house was dead asleep. I decided to turn off my computer, turn off the tv and try to go to sleep. That didn't work. I laid in the complete darkness, just crying....thinking about my baby girl. I really don't know why I was being so dramatic....I'd never really acted like that before. I guess that's where I'm really blessed....I get somewhat of an escape from the stress of the NICU, because life at home is crazy and I have a husband and 3 kids at home to keep me busy and occupy my mind. I think that's how I stay sane, being able to not have to think about the NICU 24-7 (even though it really never leaves my mind). I just kept thinking about how she's 4 months old tomorrow. And even though the time has gone by relatively fast.....it has been so long and I just want her to come home already.
She spent Halloween in the NICU
She spent Thanksgiving in the NICU
She spent Christmas in the NICU
She spent New Years in the NICU
She spent her 1st, 2nd, 3rd and will spend her 4th month birthday there.....
I guess at that time I was laying in the darkness crying to myself last night, I was just tired. I ended up falling asleep at about 6am, only to wake up at 740am to get Makai ready for school....and I never really went back to sleep after that. I woke up still crying, and staring at the clock. I had been told that Dr. Larson, the optimologist, would be there at 9am to do the eye-exam. I called the nurse before 9am and asked her to PLEASE get more specific answers from the optimologist. For the last few eye-exams he's been saying she's a zone 2 developmentally, and stage 2 ROP. I wanted to know if she was at least almost at a zone 3, or if she was still far away. I didn't want just a broad answer of zone 2. She assured me she would get the clarification and that she would call me right after the exam. That was it, that was all I could do....I had prayed, cried, begged....and all I had left to do was wait for the results.
9 o'clock came and went....10 o'clock, 11 o'clock......seriously??!! No call. Ova and I ended up going into the NICU and my heart was pounding. I had been really emotional all morning (probably a mix of anticipation and lack of sleep) and I had that knot in my throat. I'd pretty much decided that I was going to cry either way. If her eyes were developed, I would cry because I was happy.....if her eyes weren't developed I would cry sad tears. It didn't really turn out how I expected. We walked into her room and there was a paper sitting on her table. It was the notes from rounds from that morning. On the top was written:
Almost zone 3
Follow-up in 1 week
When at zone 3, ok to go home with oxygen
Then her nurse walked in and said in a very happy voice "did you hear the great news?" She proceeded to tell me that Dr. Larson said she is so so close to zone 3.....he even said it was so close he could smell it! The happy and excited attitude of her nurse took that knot out of my throat and I didn't even cry (shocker!)....just another example of why I LOVE the NICU nurses!! Even though it wasn't the best news....it was good news because it meant she has made progress and we are so close! My attitude changed and I was so happy! Dr. Larson also said that her ROP is already getting better! Such a good sign!
Another HUGE bit of good news. They weined her oxygen! They had been writing in her orders that she doesn't tolerate less than 1 liter of flow....but when I was talking to Anjanette about it the other night, we realized that they never really ever tried going less than a liter. We can't rightfully say she doesn't tolerate it if we never let her try. So yesterday they turned her down to 3/4 liter......and she did so well with that that today she went down to 1/2 liter! HUGE PROGRESS!!
Basically all we're waiting for is next Wednesday's eye-exam (hoping she's at a zone 3)
and
That she goes 7 days without any bradicardic episodes (she's on day 3 now)
That could mean that potentially she'll be able to come home as early as next week. I can't believe it! Her lung disease has definitely been a huge struggle....but I am SO SO SO grateful that that really is her ONLY struggle! Way to go my little fighter, you're amazing and I love you so much!
I was a nervous wreck for some reason. I didn't really sleep all night. I don't usually go to sleep until the wee hours of the morning anyway, but last night was worse. It was 4am and I was still awake. Everyone in my house was dead asleep. I decided to turn off my computer, turn off the tv and try to go to sleep. That didn't work. I laid in the complete darkness, just crying....thinking about my baby girl. I really don't know why I was being so dramatic....I'd never really acted like that before. I guess that's where I'm really blessed....I get somewhat of an escape from the stress of the NICU, because life at home is crazy and I have a husband and 3 kids at home to keep me busy and occupy my mind. I think that's how I stay sane, being able to not have to think about the NICU 24-7 (even though it really never leaves my mind). I just kept thinking about how she's 4 months old tomorrow. And even though the time has gone by relatively fast.....it has been so long and I just want her to come home already.
She spent Halloween in the NICU
She spent Thanksgiving in the NICU
She spent Christmas in the NICU
She spent New Years in the NICU
She spent her 1st, 2nd, 3rd and will spend her 4th month birthday there.....
I guess at that time I was laying in the darkness crying to myself last night, I was just tired. I ended up falling asleep at about 6am, only to wake up at 740am to get Makai ready for school....and I never really went back to sleep after that. I woke up still crying, and staring at the clock. I had been told that Dr. Larson, the optimologist, would be there at 9am to do the eye-exam. I called the nurse before 9am and asked her to PLEASE get more specific answers from the optimologist. For the last few eye-exams he's been saying she's a zone 2 developmentally, and stage 2 ROP. I wanted to know if she was at least almost at a zone 3, or if she was still far away. I didn't want just a broad answer of zone 2. She assured me she would get the clarification and that she would call me right after the exam. That was it, that was all I could do....I had prayed, cried, begged....and all I had left to do was wait for the results.
9 o'clock came and went....10 o'clock, 11 o'clock......seriously??!! No call. Ova and I ended up going into the NICU and my heart was pounding. I had been really emotional all morning (probably a mix of anticipation and lack of sleep) and I had that knot in my throat. I'd pretty much decided that I was going to cry either way. If her eyes were developed, I would cry because I was happy.....if her eyes weren't developed I would cry sad tears. It didn't really turn out how I expected. We walked into her room and there was a paper sitting on her table. It was the notes from rounds from that morning. On the top was written:
Almost zone 3
Follow-up in 1 week
When at zone 3, ok to go home with oxygen
Then her nurse walked in and said in a very happy voice "did you hear the great news?" She proceeded to tell me that Dr. Larson said she is so so close to zone 3.....he even said it was so close he could smell it! The happy and excited attitude of her nurse took that knot out of my throat and I didn't even cry (shocker!)....just another example of why I LOVE the NICU nurses!! Even though it wasn't the best news....it was good news because it meant she has made progress and we are so close! My attitude changed and I was so happy! Dr. Larson also said that her ROP is already getting better! Such a good sign!
Another HUGE bit of good news. They weined her oxygen! They had been writing in her orders that she doesn't tolerate less than 1 liter of flow....but when I was talking to Anjanette about it the other night, we realized that they never really ever tried going less than a liter. We can't rightfully say she doesn't tolerate it if we never let her try. So yesterday they turned her down to 3/4 liter......and she did so well with that that today she went down to 1/2 liter! HUGE PROGRESS!!
Basically all we're waiting for is next Wednesday's eye-exam (hoping she's at a zone 3)
and
That she goes 7 days without any bradicardic episodes (she's on day 3 now)
That could mean that potentially she'll be able to come home as early as next week. I can't believe it! Her lung disease has definitely been a huge struggle....but I am SO SO SO grateful that that really is her ONLY struggle! Way to go my little fighter, you're amazing and I love you so much!
7 comments:
Awesome...I've been thinking of you ask day how her exam went...keep up thee good work baby girl...call me
Yay for Baby Katea!! Monica we love u guys and hope things get better real SOON!!!
Almost there baby Katea!! Sending luvs your way =)
Monica you are such a strong woman. We are only given trials we can handle right. I want to come see you and baby Katea when I get home.
Yay! Keep up the good work, baby Katea!
have they tested her for reflux? my preemie was having bradicardia episodes often. In fact we would go 5 days without one and then he would have another and we'd be back to square one. It was so frustrating and disheartening. They finally tested him for reflux, and when we started to treat that his brady's stopped like magic!
Thanks everyone for all the love and support! It has helped so much!
To anonymous:
Yes they did test her for reflux, they did both and Upper GI and a swallow study with her. She does have reflux, but they said it's not severe enough to need intervention. We just have to hold her upright for at least 30 minutes after every feeding. What was the remedy that worked for your son? I'd LOVE to know!
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