This is the picture when Blair and I first got Harli home. A day we will never forget.
Sunday, April 29, 2012
April 29, 2012
Just wanted to give everyone a little update. Harli continues to grow and she is continuing to get better with her feedings. Blair still has to take her to doctor appointments a few times a week. Harli is weighing in at 7lbs 14ozs, and hopefully this week she breaks the 8lb mark. I also wanted to get a few pictures on here to everyone can see how much she has grown.
Tuesday, April 17, 2012
April 17, 2012
Some have probably heard that last Wednesday April 11 Blair and I were able to bring Harli home. Where it seems like such a huge step, we are still far from being out of the woods. Harli came home on a heart monitor and also a feeding tube. The heart monitor has only alarmed three times, due to Harli not breathing for twenty seconds. She is still trying to get the concept down of suck, swallow, breathe and until she figures that procedure out we have to be on the feeding tube. Blair is allowed to breast feed a maximum of six times per day and we are allowed to give Harli a total of two bottles per day. Since being home the amount of successful feedings has declined, but we are working everyday with her. We have to keep Harli on a very tight schedule with feedings every three hours, which really cuts into the sleeping time but we are getting the routine down. Since Harli has no immune system, the doctors keep stating that the least amount of people that Harli is around the better off she will be. Please continue to pray for our family and especially for Harli that she continues to grow and develop.
Blair and I have to continue to take Harli to Riley for doctor appointments for the next several months. They are still following the progression of her eyes, hearing, and her growth.
I wanted to apologize for not having anything on the blog the past couple of weeks, but we have been working on the house project which was completed early last Wednesday morning. I will work on getting some updated photos on the blog in the next couple of days.
Blair and I have to continue to take Harli to Riley for doctor appointments for the next several months. They are still following the progression of her eyes, hearing, and her growth.
I wanted to apologize for not having anything on the blog the past couple of weeks, but we have been working on the house project which was completed early last Wednesday morning. I will work on getting some updated photos on the blog in the next couple of days.
Sunday, March 18, 2012
March 18, 2012
Last night was another great night for Harli. She had no episodes and pretty much slept throughout the night. They did have to change her milk fortifier from the liquid, because they ran out of it, to the fortifier that they send babies home on. Just one more step towards getting to take Harli home!!!
Today was another great day. Harli only had one episode, which did not require any stimulation. She did breast feed three times today, two lasting fifteen minutes and the other lasting for eighteen minutes. She seems to be getting the whole routine down, but still continues to get tired.
Harli's length is now 18" long and she weighed in at 5lbs 10.5ozs, which she had a very large bowel movement right before we weighed her so it was no surprise she lost some weight. She continues to grow and they have actually lowered the amount of fortifier which they are giving Harli because of how much weight she has put on. Harli continues to do well with no oxygen which means now we just have to work on feedings and the episodes. I know with time these things will work themselves out.
Please continue to pray that Blair and I stay strong. This has been a very long journey and there is starting to get more and more stress with everything that needs completed before Harli can be released.
Today was another great day. Harli only had one episode, which did not require any stimulation. She did breast feed three times today, two lasting fifteen minutes and the other lasting for eighteen minutes. She seems to be getting the whole routine down, but still continues to get tired.
Harli's length is now 18" long and she weighed in at 5lbs 10.5ozs, which she had a very large bowel movement right before we weighed her so it was no surprise she lost some weight. She continues to grow and they have actually lowered the amount of fortifier which they are giving Harli because of how much weight she has put on. Harli continues to do well with no oxygen which means now we just have to work on feedings and the episodes. I know with time these things will work themselves out.
Please continue to pray that Blair and I stay strong. This has been a very long journey and there is starting to get more and more stress with everything that needs completed before Harli can be released.
I was being ornery today and pulled out my feeding tube!
Saturday, March 17, 2012
March 17, 2012
Harli is continuing to do very well with not being on oxygen. She is still having her "normal" couple of episodes throughout the days and nights, but she has not required any stimulation. She continues to grow, and they continue to raise her milk to compensate for the weight gain.
Blair is now up to breast feeding three times a day. Some sessions go much better than others, but she is starting to get the hang of things. Harli still has a problem not wearing herself out while breast feeding, which when she gets tired a lot of times is when she has one of her episodes.
Harli weighed in today at 5lbs 11ozs, which is significant jump from Wednesday the last time I got to see her. When Blair was holding her when I walked into the module tonight I was amazed at how much our little girl has grown this week.
The doctor and nurse practitioners have not made any significant changes to Harli in the past couple of days. Everyone seems to be very happy with the progress Harli is making, and how her episodes have been fewer, and the ones requiring stimulation have really slowed down.
Blair is now up to breast feeding three times a day. Some sessions go much better than others, but she is starting to get the hang of things. Harli still has a problem not wearing herself out while breast feeding, which when she gets tired a lot of times is when she has one of her episodes.
Harli weighed in today at 5lbs 11ozs, which is significant jump from Wednesday the last time I got to see her. When Blair was holding her when I walked into the module tonight I was amazed at how much our little girl has grown this week.
The doctor and nurse practitioners have not made any significant changes to Harli in the past couple of days. Everyone seems to be very happy with the progress Harli is making, and how her episodes have been fewer, and the ones requiring stimulation have really slowed down.
Friday, March 16, 2012
March 16, 2012
Wednesday night was another good night for Harli. She only had one episodes, which did not require any stimulation. Harli has been doing a very good job with sleeping throughout most of the night.
Yesterday was a BIG day for Harli. The doctor and nurse practitioner wrote orders to have Harli taken off of oxygen. This is the first time to date that she has ever been off of oxygen. She seemed to handle that transition very well. The one thing that I will warn everyone though is in the past when they have made an oxygen change she has never had problems till a couple of days later. That is when her body gets tired from having to work harder, so we will have to wait and see what happens. Yesterday Harli did not have any episodes, but last night she had one very quick episode which did not require any stimulation.
Blair is now doing breast feeding two times a day instead of just one. Harli seems to be getting the hang of the idea, but she gets tired very quickly so its going to be a while before she has enough strength to get the amount of milk which she requires.
I was so excited yesterday about the fact they took her off her oxygen that I never asked Blair what Harli weighed. I figured I better not call her at this time to find out since she is probably sound asleep.
Yesterday was a BIG day for Harli. The doctor and nurse practitioner wrote orders to have Harli taken off of oxygen. This is the first time to date that she has ever been off of oxygen. She seemed to handle that transition very well. The one thing that I will warn everyone though is in the past when they have made an oxygen change she has never had problems till a couple of days later. That is when her body gets tired from having to work harder, so we will have to wait and see what happens. Yesterday Harli did not have any episodes, but last night she had one very quick episode which did not require any stimulation.
Blair is now doing breast feeding two times a day instead of just one. Harli seems to be getting the hang of the idea, but she gets tired very quickly so its going to be a while before she has enough strength to get the amount of milk which she requires.
I was so excited yesterday about the fact they took her off her oxygen that I never asked Blair what Harli weighed. I figured I better not call her at this time to find out since she is probably sound asleep.
Wednesday, March 14, 2012
March 14, 2012
First of all I would like to apologize for not doing the blog the past couple of days. We are still working on our house, and their have not been enough hours in the day. Throughout the next few weeks I am going to try to get the blog typed in the morning.
Harli has been doing very good the past couple of days. She is on .5 liters of oxygen at twenty-one percent, which they are talking about taking her off oxygen by the end of the week to see how she handles it. She is on 44ml of milk, which has increased along with her weight.
On Tuesday Harli had another eye exam, the doctor said that she has progressed a little in the past week but they are going to do another eye exam next Tuesday.
Blair has started breast feeding twice a day. Some days Harli handles the first session very well, but the second session she does not want to try. Today was the first day which Harli tried breast feeding during both sessions.
Harli has grown enough now that she no longer fits into premie clothes. The new born clothes are still fairly large on her, but I am sure before we know it she will grow into those clothes as well. Tonight was the first night which I have gotten to see Harli in a few days and I can not get over how much she has grown.
Harli weighed 5lbs 1.5 ozs today. Those following the blog might be thinking that she only gained .5ozs since Sunday, but she actually lost a little weight on Monday putting her at 4lbs 13ozs. She had not had any bowel movements on Sunday so we figured on Monday she might lose weight and we were right. So since Monday she has went from 4lbs 13ozs to 5lbs 1.5ozs, which is a nice jump in the past couple of days.
Harli continues to have a few episodes here and there. They seem to be getting less with time, but she occasionally dips her heart rate down just low enough for it to register on the monitor and then she brings it right back up. In the past few days Harli has not had an episodes which required any stimulation which is a big step.
Today Riley gave the mothers a baby shower, and my wife and my daughter were both featured on Fox 59 news. If you did not get a chance to see the interview and would like copy and past the link below into your search engine. I can not get it set up where you can just click on the link.
http://www.fox59.com/news/wxin-riley-baby-shower-hospital-throws-baby-showers-for-mothers-in-intensive-care-unit-20120314,0,3207004.column
"Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart I will be found by you." Jeremiah 29:12-14
Harli has been doing very good the past couple of days. She is on .5 liters of oxygen at twenty-one percent, which they are talking about taking her off oxygen by the end of the week to see how she handles it. She is on 44ml of milk, which has increased along with her weight.
On Tuesday Harli had another eye exam, the doctor said that she has progressed a little in the past week but they are going to do another eye exam next Tuesday.
Blair has started breast feeding twice a day. Some days Harli handles the first session very well, but the second session she does not want to try. Today was the first day which Harli tried breast feeding during both sessions.
Harli has grown enough now that she no longer fits into premie clothes. The new born clothes are still fairly large on her, but I am sure before we know it she will grow into those clothes as well. Tonight was the first night which I have gotten to see Harli in a few days and I can not get over how much she has grown.
Harli weighed 5lbs 1.5 ozs today. Those following the blog might be thinking that she only gained .5ozs since Sunday, but she actually lost a little weight on Monday putting her at 4lbs 13ozs. She had not had any bowel movements on Sunday so we figured on Monday she might lose weight and we were right. So since Monday she has went from 4lbs 13ozs to 5lbs 1.5ozs, which is a nice jump in the past couple of days.
Harli continues to have a few episodes here and there. They seem to be getting less with time, but she occasionally dips her heart rate down just low enough for it to register on the monitor and then she brings it right back up. In the past few days Harli has not had an episodes which required any stimulation which is a big step.
Today Riley gave the mothers a baby shower, and my wife and my daughter were both featured on Fox 59 news. If you did not get a chance to see the interview and would like copy and past the link below into your search engine. I can not get it set up where you can just click on the link.
http://www.fox59.com/news/wxin-riley-baby-shower-hospital-throws-baby-showers-for-mothers-in-intensive-care-unit-20120314,0,3207004.column
"Then you will call upon me and come and pray to me, and I will listen to you. You will seek me and find me when you seek me with all your heart I will be found by you." Jeremiah 29:12-14
Sunday, March 11, 2012
March 11, 2012
Last night was another good night for Harli. She did not have any episodes, and she continues to have bowel movements.
Today there were no big changes from the doctor or nurse practitioner. They did raise her milk from 39ml to 40ml to adjust for weight gain. Harli remains on one liter of oxygen at twenty-one percent. Little miss Harli did have a couple of very quick episodes today, which she brought back up by herself. Harli did not have any bowel movements today, so the night nurse might have fun tonight.
Blair got to breast feed today which went better than yesterday. Harli seemed very interested for about ten minutes before she got tired and decided she just wanted to lay there. I guess why work for the milk when she is going to get it one way or another.
Harli weighed in today at 5lbs 1.5ozs and measured 17.5" long. She continues to grow with each day, and continues to have fewer episodes. I would expect her weight to be down a little tomorrow since she did not have any bowel movements throughout the day.
Today there were no big changes from the doctor or nurse practitioner. They did raise her milk from 39ml to 40ml to adjust for weight gain. Harli remains on one liter of oxygen at twenty-one percent. Little miss Harli did have a couple of very quick episodes today, which she brought back up by herself. Harli did not have any bowel movements today, so the night nurse might have fun tonight.
Blair got to breast feed today which went better than yesterday. Harli seemed very interested for about ten minutes before she got tired and decided she just wanted to lay there. I guess why work for the milk when she is going to get it one way or another.
Harli weighed in today at 5lbs 1.5ozs and measured 17.5" long. She continues to grow with each day, and continues to have fewer episodes. I would expect her weight to be down a little tomorrow since she did not have any bowel movements throughout the day.
"Faith is being sure of what we hope for and certain of what we do not see." Hebrews 11:1
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