June 25, 2013
There has not been a great deal that has changed over the past week. I am just trying to get bigger and everything else is on hold as that happens.
Respiratory: I am still on CPAP but hopefully moving onto high flow oxygen later in the week or beginning of next week. My lungs look good though and they are keeping me on it because there is no real reason to get me off since I still have so much more growing to do.
Feeding: They have gone up significant amounts on my feeding as I gain weight. Still fortifying with the safflower oil but outside of that eating away. Next week will probably be the beginning of trying oral feeding (first by bottle and then in 2-3 weeks trying straight from the source!)
Growth: I am a whopping 1280grams or 2lb and 11oz! I have officially doubled in size and approaching the 3lb mark. The biggest issue I have is that it is a %of weight calculation that can predict how much I will gain. So, for example, I should gain about 1.6% of my total weight daily which is about 20g/day. If I was 2000grams it would be more like 30grams/day so I grow slower because I am smaller. Darn!
Developmentally: I am really acting like a baby now though. I cry when I am hungry. I look around and love here my Mom and Dad's voices. I am learning to self soothe and learning to take my pacifier. I even will get to start wearing clothes this week.
Overall, doing well and getting better.
Tuesday, June 25, 2013
Monday, June 17, 2013
June 17, 2013 - eye exam, blood transfusion, and weening off of CPAP - oh my!
June 17, 2013
Well, after a week of relaxing and my only job was to grow, they started off with a bang!
Growth: I was up to 1.12kg two days ago and I dropped back down last night to 1.1kg but the dietician is happy because over the week I increased a really good amount from 0.96 to 1.1kg - almost 140 grams! That is a lot for little me.
Respiratory: they have not been working on my lungs of late to focus on my weight so today they weaned me off a little more of the CPAP. They want to get me on the next phase of support (nasal cannula) by the end of the week. From there it is just a few weeks from tube free!
Eyes: the latest check they are doing is on my eyes. The oxygen helps me but is also dangerous for my eyes. There is danger of ROP and they check my eyes to make sure I have not developed this condition. They have conducted a few exams and nothing too concerning so far but my eyes are still not developed enough to completely rule out the issue.
Feeding: they are giving me the max calories a day and I am tolerating that well. I can't start oral feeding though until I get off of the CPAP machine. So cross your fingers I tolerate that well.
Besides all that I had to get one more blood transfusion because my blood count was low. I hope that is the last one! Oh and as you might know mom was diagnosed with hyperthyroidism during pregnancy due to a toxic nodule in her thyroid. My thyroid is a little off now and so they are checking me out for any issues
Well, after a week of relaxing and my only job was to grow, they started off with a bang!
Growth: I was up to 1.12kg two days ago and I dropped back down last night to 1.1kg but the dietician is happy because over the week I increased a really good amount from 0.96 to 1.1kg - almost 140 grams! That is a lot for little me.
Respiratory: they have not been working on my lungs of late to focus on my weight so today they weaned me off a little more of the CPAP. They want to get me on the next phase of support (nasal cannula) by the end of the week. From there it is just a few weeks from tube free!
Eyes: the latest check they are doing is on my eyes. The oxygen helps me but is also dangerous for my eyes. There is danger of ROP and they check my eyes to make sure I have not developed this condition. They have conducted a few exams and nothing too concerning so far but my eyes are still not developed enough to completely rule out the issue.
Feeding: they are giving me the max calories a day and I am tolerating that well. I can't start oral feeding though until I get off of the CPAP machine. So cross your fingers I tolerate that well.
Besides all that I had to get one more blood transfusion because my blood count was low. I hope that is the last one! Oh and as you might know mom was diagnosed with hyperthyroidism during pregnancy due to a toxic nodule in her thyroid. My thyroid is a little off now and so they are checking me out for any issues
Thursday, June 13, 2013
June 13 - day 45 wow!
June 13, 2013
Wow! I can't believe I have been here for 45 days. That at is a long time to be in the hospital! I probably have another good 40 to go :-( I wish I was in mommys tummy instead but cest la vie!
Respiratory wise nothing has changed because they are keeping me on basic oxygen so I can focus in getting bigger which has been a bit of a challenge. I have not gained very much weight in the last 10 days and this is frustrating for everyone. We tried switching me to hind milk which is the last hall of the milk mom pumps which supposedly has more calories...my weight shot up for 2 days and then fell right back down bit that was in a day where I was Really fussy so I could have just burned off more calories that day-the littlest thing can set me off.
So keep praying that I gain weight because that is the key to my success right now.
On a positive note, everything else is going well!
Wow! I can't believe I have been here for 45 days. That at is a long time to be in the hospital! I probably have another good 40 to go :-( I wish I was in mommys tummy instead but cest la vie!
Respiratory wise nothing has changed because they are keeping me on basic oxygen so I can focus in getting bigger which has been a bit of a challenge. I have not gained very much weight in the last 10 days and this is frustrating for everyone. We tried switching me to hind milk which is the last hall of the milk mom pumps which supposedly has more calories...my weight shot up for 2 days and then fell right back down bit that was in a day where I was Really fussy so I could have just burned off more calories that day-the littlest thing can set me off.
So keep praying that I gain weight because that is the key to my success right now.
On a positive note, everything else is going well!
Saturday, June 8, 2013
June 8, 2013 - Stepping Down...
June 8, 2013
Well, it has been an eventful week. The big event was that I moved out of the Main ICU to what they call the "step-down" unit. There are three units Unit A, the Step-Down Unit, and Unit B (the unit where I will eventually get to go home out of). This is a big graduation. It means that I am pretty stable. Closer to going home.
Respiratory: I am on CPAP for oxygen support but on very low settings. They are not pushing me very hard to get off this machine because it is non-invasive and they want me to focus on growing at this point as the critical step not as much on my lungs - I guess that is a good thing??
Feeding: They had to add safflower oil to my diet - yep, shots of pure fat. They are desperate it seems but I will not complain because I know one day, I will wish fat was a little easier to hide.
Growth: I am still at 0.99KG - I have bounced a great deal this week between 0.94-1.0KG. My doctor assures me that this is normal and that all of the sudden I will start packing on the pounds.I will believe it when I see it.
Development: I am working with my pacifier right now. This is a particularly good device for me because I need to practice sucking for future feeding needs.
Also, I am kangarooing like crazy. So fun!
Well, it has been an eventful week. The big event was that I moved out of the Main ICU to what they call the "step-down" unit. There are three units Unit A, the Step-Down Unit, and Unit B (the unit where I will eventually get to go home out of). This is a big graduation. It means that I am pretty stable. Closer to going home.
Respiratory: I am on CPAP for oxygen support but on very low settings. They are not pushing me very hard to get off this machine because it is non-invasive and they want me to focus on growing at this point as the critical step not as much on my lungs - I guess that is a good thing??
Feeding: They had to add safflower oil to my diet - yep, shots of pure fat. They are desperate it seems but I will not complain because I know one day, I will wish fat was a little easier to hide.
Growth: I am still at 0.99KG - I have bounced a great deal this week between 0.94-1.0KG. My doctor assures me that this is normal and that all of the sudden I will start packing on the pounds.I will believe it when I see it.
Development: I am working with my pacifier right now. This is a particularly good device for me because I need to practice sucking for future feeding needs.
Also, I am kangarooing like crazy. So fun!
Saturday, June 1, 2013
June 1, 2013 - Pacifier, crying for food, etc.
June 1, 2013
The last couple of days were really good. I am still off of my vent and doing much better without the tube down my throat...happiness. My oxygen is stabler, I am eating like crazy and in general feel much better.
Respiratory: As I said, I am now permanently off the vent. There is still some fluid in my lungs so they are going to give me a bit more lasix to help clear up my lungs. But so far so good.
Feeding: I now cry when I am hungry and am at ease after I eat. Which needs to be every 2.5 hours. I am up to 24cal/feed which is great. They have intoduced a pacifier during feeding times so that I start associating sucking with feeding times. To start prepping me for a bottle (about 3 weeks from now). I can't have a bottle until gestational week 34.
Growth: Still slow growth. Up to 0.96 KG or 2.1 lbs. Need to get up to 4 to be able to go home. So need to start packing on the pounds.
Mom and I are up to 3 hours of kangaroo time but it is now frustrating to not just be able to be held all the time. Hopefully, soon we will be able to snuggle more and more.
That is the excitement of the last couple of days. Hope all is well with you.
The last couple of days were really good. I am still off of my vent and doing much better without the tube down my throat...happiness. My oxygen is stabler, I am eating like crazy and in general feel much better.
Respiratory: As I said, I am now permanently off the vent. There is still some fluid in my lungs so they are going to give me a bit more lasix to help clear up my lungs. But so far so good.
Feeding: I now cry when I am hungry and am at ease after I eat. Which needs to be every 2.5 hours. I am up to 24cal/feed which is great. They have intoduced a pacifier during feeding times so that I start associating sucking with feeding times. To start prepping me for a bottle (about 3 weeks from now). I can't have a bottle until gestational week 34.
Growth: Still slow growth. Up to 0.96 KG or 2.1 lbs. Need to get up to 4 to be able to go home. So need to start packing on the pounds.
Mom and I are up to 3 hours of kangaroo time but it is now frustrating to not just be able to be held all the time. Hopefully, soon we will be able to snuggle more and more.
That is the excitement of the last couple of days. Hope all is well with you.
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