The past couple of nights have been really good. Harli's episodes have slowed down and out of the ones she is having she is recovering more on her own.
Today the doctor and nurse practitioner did not make any changes. They left her feedings where they were and she remains on 1 liter of oxygen. She continues to have a few episodes, but they are farther apart and most of them are not requiring stimulation.
Today was a big day for both Harli and Blair. A professional photographer came in and took pictures of Harli and Blair for the newsletter which goes out to the people who donate money to Riley. They also interviewed Blair, and in return gave Blair a CD with all the pictures which they took.
Today our little girl weighed in at 4lbs 8ozs, which is a large jump for Harli. On Thursday they are going to try to do a little breast feeding to see how Harli handles it, I know that Blair is very excited and I wish I could be out there. Our little girl is getting so big, but still has a long way to go.
I am sorry there are not going to be any pictures on here, I am having some computer problems, but hopefully tomorrow I will be able to get a few extras.
Thursday, March 8, 2012
Tuesday, March 6, 2012
March 6, 2012
Harli had another good night last night. She continues to have a couple episodes, but she is recovering own her own on most. Harli also has started having most of her bowel movements through the night, which does not bother me at all.
Today went very well for Harli. The doctor, which we got another one today, and our nurse practitioner did not make any changes with Harli. Her feeds remain the same and she remains on 1 liter of oxygen, and they are still adding caffeine and iron to her milk. She made it through the day with only a couple of episodes, and those came after her eye exam.
Harli handled the eye exam better today than she did two weeks ago. She is still rated as a 1 (1 the best 4 the worst) but they are going to do another eye exam next Tuesday to be on the safe side. There were a few little problems they found, and we were also told that 90% of the premature babies rated at a one out grow the problem. They explained what they found, but it is much easier to just ask for your prayers once again rather than trying to explain the situation because I'm not really sure how to put it into words.
Harli's weight dropped a little bit today, down to 4lbs 5.5ozs. Our nurse was not surprised with the amount of bowel movements which she had last night. Even though she has lost a little bit of weight she is looking so good, and she looks like she is getting bigger with each day.
"I will carry you in my arms, just like a father carries his child." Deuteronomy 1:31
Today went very well for Harli. The doctor, which we got another one today, and our nurse practitioner did not make any changes with Harli. Her feeds remain the same and she remains on 1 liter of oxygen, and they are still adding caffeine and iron to her milk. She made it through the day with only a couple of episodes, and those came after her eye exam.
Harli handled the eye exam better today than she did two weeks ago. She is still rated as a 1 (1 the best 4 the worst) but they are going to do another eye exam next Tuesday to be on the safe side. There were a few little problems they found, and we were also told that 90% of the premature babies rated at a one out grow the problem. They explained what they found, but it is much easier to just ask for your prayers once again rather than trying to explain the situation because I'm not really sure how to put it into words.
Harli's weight dropped a little bit today, down to 4lbs 5.5ozs. Our nurse was not surprised with the amount of bowel movements which she had last night. Even though she has lost a little bit of weight she is looking so good, and she looks like she is getting bigger with each day.
"I will carry you in my arms, just like a father carries his child." Deuteronomy 1:31
Monday, March 5, 2012
March 5, 2012
Harli had a pretty smooth night last night. She only had a couple of episodes, which she was able to correct on her own.
Today there were a few changes made, but not many. They raised her feedings from 35ml to 37ml, because of weight gain. They have also started adding iron to her milk. Harli had blood work this morning and her red blood cell count was a little low. They also saw that her body is trying to produce its own blood so they are going to hold off any blood transfusion at this point.
Blair got to do non-nutritive breast feeding again today and it was more successful than yesterday. Blair was also able to hold Harli for a large portion of the time she was able to be in the module. Our module was closed for a few hours for surgery on another baby. Which allowed our nurse the chance to hold Harli for the first time. Harli had three episodes today, a couple of those were very quick episodes that she brought back up on her own.
Harli weighed in today at 4lbs 6ozs, and today was the first day that she has been weighed on a portable scale. Now that she is not in the crib any more she gets weighed on the portable scale not in her bed like she has in the past.
"God is good all the time, all the time God is good."
Today there were a few changes made, but not many. They raised her feedings from 35ml to 37ml, because of weight gain. They have also started adding iron to her milk. Harli had blood work this morning and her red blood cell count was a little low. They also saw that her body is trying to produce its own blood so they are going to hold off any blood transfusion at this point.
Blair got to do non-nutritive breast feeding again today and it was more successful than yesterday. Blair was also able to hold Harli for a large portion of the time she was able to be in the module. Our module was closed for a few hours for surgery on another baby. Which allowed our nurse the chance to hold Harli for the first time. Harli had three episodes today, a couple of those were very quick episodes that she brought back up on her own.
Harli weighed in today at 4lbs 6ozs, and today was the first day that she has been weighed on a portable scale. Now that she is not in the crib any more she gets weighed on the portable scale not in her bed like she has in the past.
"God is good all the time, all the time God is good."
Sunday, March 4, 2012
March 4, 2012
Last night did not go as smoothly as the past few nights, but there were no big problems. She had more episodes than she has had in a while, and more of them required stimulation.
This morning was not much different. Harli continued to have episodes, some requiring stimulation and some she was able to recover on her own. The nurse practitioner decided not to have her blood work checked, to see if she is low on blood, since she has her weekly blood work tomorrow. The last time her blood work was done she was a little low, but wondering now if she is getting a little tired from having to work harder. Her color was a little more pale today, which has not been the case since right before she got her last blood transfusion. They did raise her oxygen up from .5 liters to 1 liter to see if that would help. They also weight adjusted her caffeine for a little added support. Harli continues to be having problems with her nose getting congested due to the dry air in the module. Until last week she was always on humidified air and now she is not.
Blair and I both got to hold Harli for a large amount of time. Blair also got to do non-nutritive feedings which were not very successful. Harli almost seemed as if she could not breathe very well so she really was not into doing anything but trying to breathe. They have continued to suck her nose out, but are not able to get everything cleared up yet.
Harli weighed in at 1950 grams, or 4lbs 5ozs. She has gained a little over 200 grams in the past week and a half. She is really starting to fill out and her strength is amazing to witness. She definitely has her own personality. Harli did get moved into a crib today!
This morning was not much different. Harli continued to have episodes, some requiring stimulation and some she was able to recover on her own. The nurse practitioner decided not to have her blood work checked, to see if she is low on blood, since she has her weekly blood work tomorrow. The last time her blood work was done she was a little low, but wondering now if she is getting a little tired from having to work harder. Her color was a little more pale today, which has not been the case since right before she got her last blood transfusion. They did raise her oxygen up from .5 liters to 1 liter to see if that would help. They also weight adjusted her caffeine for a little added support. Harli continues to be having problems with her nose getting congested due to the dry air in the module. Until last week she was always on humidified air and now she is not.
Blair and I both got to hold Harli for a large amount of time. Blair also got to do non-nutritive feedings which were not very successful. Harli almost seemed as if she could not breathe very well so she really was not into doing anything but trying to breathe. They have continued to suck her nose out, but are not able to get everything cleared up yet.
Harli weighed in at 1950 grams, or 4lbs 5ozs. She has gained a little over 200 grams in the past week and a half. She is really starting to fill out and her strength is amazing to witness. She definitely has her own personality. Harli did get moved into a crib today!
"I will never leave you or abandon you." Hebrews 13:5
Saturday, March 3, 2012
March 3, 2012
Harli made it through another night with just a few episodes. A couple of those episodes needed stimulation, and a couple did not. The top of her bed remained off throughout the entire night, and she managed to maintain her body temperature.
Today was not much different. Her top of her bed remained up, and her temperature remained good. The only change the doctor and nurse practitioner made was to raise her milk from 34ml to 35ml to adjust for her weight gain. She remains on .5 liters of oxygen at about twenty-one percent. Harli had a total of three episodes throughout the day, but none of those episodes required stimulation. Her nurse and nurse practitioner said they were not worried about her episodes because she still is not suppose to be here and they should slowly start to get less.
Blair was able to do non-nutritive feeding again today, and Harli seemed to be interested again. The session lasted about fifteen minutes, and Blair continued to hold her for a total of an hour. Blair has also been holding her every time Harli gets fed. It is much different now that she is dressed and is on room air because now Blair and I can hold her whenever we want and for however long we like.
Harli weighed in today at 1920 grams, or 4lbs 3.5ozs. She is continuing to gain weight and tonight they were going to put her in a crib, but there were no empty cribs to be found. So for the time being she is going to stay in her bed with the top off as long as her temperature does not drop and she continues to gain weight. There really is not much difference between her bed now and a crib so we are not out anything by her staying in there for a few more days.
"God is good all the time, all the time God is good."
Today was not much different. Her top of her bed remained up, and her temperature remained good. The only change the doctor and nurse practitioner made was to raise her milk from 34ml to 35ml to adjust for her weight gain. She remains on .5 liters of oxygen at about twenty-one percent. Harli had a total of three episodes throughout the day, but none of those episodes required stimulation. Her nurse and nurse practitioner said they were not worried about her episodes because she still is not suppose to be here and they should slowly start to get less.
Blair was able to do non-nutritive feeding again today, and Harli seemed to be interested again. The session lasted about fifteen minutes, and Blair continued to hold her for a total of an hour. Blair has also been holding her every time Harli gets fed. It is much different now that she is dressed and is on room air because now Blair and I can hold her whenever we want and for however long we like.
Harli weighed in today at 1920 grams, or 4lbs 3.5ozs. She is continuing to gain weight and tonight they were going to put her in a crib, but there were no empty cribs to be found. So for the time being she is going to stay in her bed with the top off as long as her temperature does not drop and she continues to gain weight. There really is not much difference between her bed now and a crib so we are not out anything by her staying in there for a few more days.
"God is good all the time, all the time God is good."
Friday, March 2, 2012
March 2, 2012
Harli made it through last night with four episodes, two requiring stimulation and two she brought back up on her own. Last night Harli's temperature got really high so they ended up popping the top on her bed. Harli's body temperature never changed after they popped the top which is awesome.
Today the doctor and nurse practitioner made a couple changes. They lowered her oxygen down to .5 liters per minute. They did not do this until six tonight, but when we left at nine she was handling it very well. They also upped her milk from 32ml to 34ml due to the weight gain she has had. She spent the whole day with the top off her bed, and she was able to maintain her temperature and also able to gain weight, which is what everyone was most concerned about.
Blair got the chance to do non-nutritive feedings again today, but they did not go as well. Harli did not seem as interested tonight as she has in the past couple days. Everyone said that was to be expected since she actually handled it better the first couple of times than they thought she would.
Harli weighed in today at 1870 grams, or 4lbs 2.5ozs. She had a considerable amount of weight gain which surprised everyone. She continues to gain weight, have bowel movements, and maintain her temperature which is the most important things right now. Hopefully this weekend she gets moved from her bed into a crib.
"I am your shelter and a place of safety from your enemies." Psalm 6:13
Today the doctor and nurse practitioner made a couple changes. They lowered her oxygen down to .5 liters per minute. They did not do this until six tonight, but when we left at nine she was handling it very well. They also upped her milk from 32ml to 34ml due to the weight gain she has had. She spent the whole day with the top off her bed, and she was able to maintain her temperature and also able to gain weight, which is what everyone was most concerned about.
Blair got the chance to do non-nutritive feedings again today, but they did not go as well. Harli did not seem as interested tonight as she has in the past couple days. Everyone said that was to be expected since she actually handled it better the first couple of times than they thought she would.
Harli weighed in today at 1870 grams, or 4lbs 2.5ozs. She had a considerable amount of weight gain which surprised everyone. She continues to gain weight, have bowel movements, and maintain her temperature which is the most important things right now. Hopefully this weekend she gets moved from her bed into a crib.
"I am your shelter and a place of safety from your enemies." Psalm 6:13
Thursday, March 1, 2012
March 1, 2012
Last night was a pretty good night for miss Harli. She did have four episodes throughout the night, two of those required stem and two did not. She continues to sleep well throughout the night.
Today was a better day for Harli. She only had a couple episodes, which not all of them required stem. The doctor and nurse practitioner did not make any changes, so she remains on the one liter of vapotherm and 32ml of milk. They have continued to keep her wrapped in blankets since they have the heat turned down in her bed. When they have her wrapped up in the blankets there is not much movement since her arms and legs are all bundled up.
Today Blair got to do non nutritive feeding again, which Harli handled great. She is getting closer everyday to be breast feeding. It is amazing to see how much Blair enjoyed it! Both of my girls are doing so great, and I am so thankful.
I got the chance to kangaroo Harli tonight for almost two hours. During our kangaroo session Harli's vitals remained perfect until the very end. She had an episode that was a little longer, but with a little bit of stimulation she took back off.
Harli weighed in at 1790 grams, or 3lbs 15.5ozs. She is very close to the magical 1800 grams. Once she hits 1800 grams they will raise the top off her bed to see how her body temperature maintains on room temperature. If her body temperature maintains they will consider moving her into a crib.
"I will never leave you or abandon you." Hebrews 13:5
Today was a better day for Harli. She only had a couple episodes, which not all of them required stem. The doctor and nurse practitioner did not make any changes, so she remains on the one liter of vapotherm and 32ml of milk. They have continued to keep her wrapped in blankets since they have the heat turned down in her bed. When they have her wrapped up in the blankets there is not much movement since her arms and legs are all bundled up.
Today Blair got to do non nutritive feeding again, which Harli handled great. She is getting closer everyday to be breast feeding. It is amazing to see how much Blair enjoyed it! Both of my girls are doing so great, and I am so thankful.
I got the chance to kangaroo Harli tonight for almost two hours. During our kangaroo session Harli's vitals remained perfect until the very end. She had an episode that was a little longer, but with a little bit of stimulation she took back off.
Harli weighed in at 1790 grams, or 3lbs 15.5ozs. She is very close to the magical 1800 grams. Once she hits 1800 grams they will raise the top off her bed to see how her body temperature maintains on room temperature. If her body temperature maintains they will consider moving her into a crib.
"I will never leave you or abandon you." Hebrews 13:5
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