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.

I was being ornery today and pulled out my feeding tube! 

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.

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.

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

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.

"Faith is being sure of what we hope for and certain of what we do not see."  Hebrews 11:1

March 10, 2012

I wanted to apologize for not keeping up on the blog this past couple of weeks.  There just does not seem to be enough hours in the day.

Harli has been doing very well.  She continues to have her few episodes throughout the day and night, most of those episodes are very quick and do not require stimulation.  The past couple days the doctor and nurse practitioner have not made any big changes.  The only change to speak of is they continue to weight adjust her milk, meaning when she gains weight they raise the amount of milk she is getting.  She continues to grow and at this point Harli weighs 4lbs 13ozs.  I was not able to be out here for a few nights this week due to construction on the house and I could not get over the changes which she has made.  She is starting to look more and more like a new born, even though she still has a long way to go to catch up with their weight.

The doctor and nurse practitioner continue to have Blair attempt breast feeding.  Some days go smoother than others, but we are trying to stay positive and keep telling ourselves that it will happen when she is ready.  She seems to have the whole suck, swallow, breathe portion of the breast feeding down its just trying to get her to keep doing it for more than just a minute.

Hard to imagine my wedding ring once fit around her arm!

The picture on the left was a mold of Harli's hand when she was a month old, the one on the right was done at two months old.  She is getting big!

Our nurse and Blair gave Harli a bath earlier this week.

Looks like she is thinking.

"Wait patiently for me, and I will hear your cry."  Psalm 40:1

March 9, 2012

Last night Harli had a rough night.  She had six episodes, none requiring stimulation, but still more episodes than she had the previous twenty-four hours.  (Harli had gone twenty-four hours with no episode.)  Not real sure what is causing the episodes again, but could just be the fact that she is a preemie and she gets tired very easy.

Yesterday Harli had a great day.  They raised her milk from 37ml to 39ml and she seemed to handle that change very well.  Other than the milk the doctor and nurse practitioner did not make any changes.  Blair got the chance to breast feed for the first time.  On and off for a fifteen minute period Harli was able to do the whole suck, swallow, breath which is what most preemie's have problems with. Then again late last night Blair did non-nutritive feedings with Harli, but I guess Harli was so tired that she would not stay awake.

Harli weighed in at 4lbs 8ozs, which is a pretty significant jump.  She continues to get bigger and stronger with every day, now if we can continuing to have days with no episodes we will be doing good.

I apologize for the blog not getting done at night and the fact that there are no pictures of verses.  We have been doing construction on the house and this week and there have been very late nights, and since I do not have internet at our house I can't just jump on and write the blog before I go to bed. I will try to get some pictures on either late tonight or tomorrow.  I do continue to ask that you pray for our family for the strength and endurance throughout our challenges.

March 7, 2012

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.

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

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."

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!

"I will never leave you or abandon you."  Hebrews 13:5

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."

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

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