First off Penelope is now 110 days old, weighs 7lbs 11oz, is 18.75 inches, feeds are 56Q3 of 27 calorie fortified breast milk, she can have as many bottle attempts a day as she can tolerate, and her respiratory support has FINALLY been changed to 1.5 liter high flow with a floor of 80% oxygen. Tomorrow she will go to 1 liter high flow with a floor of 100% and if that goes well, in a few days, she will be switched over to straight oxygen. That's the kind of oxygen she will come home on, so we are super close in that department!
Bottles are going better but she still isn't very consistent. Some feedings she will take 10 of the 56 and others she takes all 56. She doesn't fight it anymore, so we are getting closer. The doctors are giving her another week to figure out if we are going to be putting in a feeding tube surgically before she comes home. Speaking of surgery, the Pediatric surgery residents looked at her hernias today and the inguinal hernia IS surgical. So we need to get everything home ready, do the surgery, hang out for a few days in recovery, and then GO HOME! HOME HOME HOME!
Wednesday, June 8, 2011
Monday, June 6, 2011
Long Time
Sorry that I haven't posted in a few days. There hasn't been much to write about so I decided to take a break. So lets start with the stats, Penelope is now a whopping 7lbs 7oz, she gets 56Q3 of 27 calorie fortified milk, she gets 3 fortified, rice cereal thickened bottle attempts per day. She was moved back to Bay 4 last week at my request. Bay 4 and 5 are the same as far as progress, but 4 is nicer, and since I practically live here, I wanted the nice room. So we have had 6 rooms now, plus the 3 that I stayed in as an inpatient!
Bay 1, Bed 5, 42 days
Bay 2, Bed 24, 3 days
Bay 2, Bed 23, 50 days
Bay 4, Bed 52, 3 days
Bay 5, Bed 67, 7 days
Bay 4, Bed 55, 3 days and counting
Today was the big ROP exam. Last night was a long night, I slept, but I don't feel like I am rested. I woke up at 6 and was at the hospital by 6:30. I spent 30 minutes in the hospital meditation room gathering my strength. A good ROP outcome would mean going home soon, but also probably mean getting a feeding tube put in surgically since bottles are still not very good. A bad ROP exam would mean eye surgery this week (highly unlikely for us at this point, but at least it would a means to an end). A stable ROP would mean 2 MORE weeks of waiting on the eyes, but buy me time on bottles. None of the options were good. We are in the STABLE category. We have been stable for 7 weeks, the next exam is in 1-2 weeks, so I won't know until Wednesday if we are on next weeks list or not. This will mean HALF our stay has been waiting for her eyes. Ugh.
Bottles are still not going very well. She isn't in pain anymore when she takes a bottle, but it takes a lot of convincing to get her to even try. The high flow is causing her to swallow a lot of air, so she was started on Mylicon yesterday to see if we can relieve some of the gas pain. We were all banking on her eyes being a better today and being able to turn down the high flow. The nurse practitioner is consulting with Dr Klein to see if we can go down on the high flow and up on the oxygen level for the same effectiveness. It would at least help us get her a little more home ready, and maybe get bottles to work out more.
So, we sit and wait, and wait, and wait, and wait. Either way, it looks like I will now be spending the 4th of July in the hospital.
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UPDATE! So, Dr Widness says that her eyes are stable enough that we can go home like this and come back for weekly checks. So now we are going to start getting home ready! So they are going to start weaning her high flow to get her on home ready oxygen. We have to show over the next week that she is showing some improvement EVERYDAY on bottles and then I can be taught how to place an NG tube (meaning feeding tube through her nose instead of surgical). If she isn't showing signs of improvement then they will place a G tube during her hernia surgery! I don't have an estimated discharge date, but they no longer feel like we need stay for her eyes! HOORAY!!!!!!!!!!!!!!!!!!
Bay 1, Bed 5, 42 days
Bay 2, Bed 24, 3 days
Bay 2, Bed 23, 50 days
Bay 4, Bed 52, 3 days
Bay 5, Bed 67, 7 days
Bay 4, Bed 55, 3 days and counting
Today was the big ROP exam. Last night was a long night, I slept, but I don't feel like I am rested. I woke up at 6 and was at the hospital by 6:30. I spent 30 minutes in the hospital meditation room gathering my strength. A good ROP outcome would mean going home soon, but also probably mean getting a feeding tube put in surgically since bottles are still not very good. A bad ROP exam would mean eye surgery this week (highly unlikely for us at this point, but at least it would a means to an end). A stable ROP would mean 2 MORE weeks of waiting on the eyes, but buy me time on bottles. None of the options were good. We are in the STABLE category. We have been stable for 7 weeks, the next exam is in 1-2 weeks, so I won't know until Wednesday if we are on next weeks list or not. This will mean HALF our stay has been waiting for her eyes. Ugh.
Bottles are still not going very well. She isn't in pain anymore when she takes a bottle, but it takes a lot of convincing to get her to even try. The high flow is causing her to swallow a lot of air, so she was started on Mylicon yesterday to see if we can relieve some of the gas pain. We were all banking on her eyes being a better today and being able to turn down the high flow. The nurse practitioner is consulting with Dr Klein to see if we can go down on the high flow and up on the oxygen level for the same effectiveness. It would at least help us get her a little more home ready, and maybe get bottles to work out more.
So, we sit and wait, and wait, and wait, and wait. Either way, it looks like I will now be spending the 4th of July in the hospital.
------------------------------------
UPDATE! So, Dr Widness says that her eyes are stable enough that we can go home like this and come back for weekly checks. So now we are going to start getting home ready! So they are going to start weaning her high flow to get her on home ready oxygen. We have to show over the next week that she is showing some improvement EVERYDAY on bottles and then I can be taught how to place an NG tube (meaning feeding tube through her nose instead of surgical). If she isn't showing signs of improvement then they will place a G tube during her hernia surgery! I don't have an estimated discharge date, but they no longer feel like we need stay for her eyes! HOORAY!!!!!!!!!!!!!!!!!!
Wednesday, June 1, 2011
Swallow Study
Penelope has been bottle feeding for a month with very little progress. Last week they started her on Prilosec, and they stopped it yesterday because it didn't help. I have tried every suggestion the staff has given me with no luck. The harder we work the more she fights. Last night I was so frustrated and praying for answers. Someone must have heard my prayers because today's nurse was hell bent on figuring this out. She did a bottle at 9am to asess Penny and then consulted with the doctors. The doctors ordered another speech consult for noon. At noon speech ordered a Swallow Study and by 1:45 Penny was in Pediatric Radiology.
The purpose of a swallow study is to see mechanically how someone swallows and where the contents end up. So Penny had to drink a liquid that would show up on an xray and then have a series of pictures taken while she sucks/swallows. They found exactly what the nurse had suspected. Every time Penelope swallows just a little bit goes down her airway. Think about what it feels like when you have liquid go down the wrong way and then imagine that happening EVERY time you drink! No wonder she hates bottles! So the theory is that if we thicken her milk it shouldn't happen. I am hoping we have figured it out!
On our way back to Penny's room the nurse explained to me why she was able to see what everyone else missed. She is actually part of the feeding study research team. Her role in particular is to evaluate bottle feeding, so this just happens to be her specialty! On top of that there were only a couple things we hadn't ruled out, so it was easier for her to figure out. So tonight I am thankful for Tera and her very specific knowledge! I think I will be nominating her for the hospital's nursing excellence award when I get back to IC!
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