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."