February 7, 2012

Harli had a good night last night, she only had two episodes and handled her feedings very well.  Harli's night nurse told us that she slept most of the night with not a whole lot of activity.

When Blair arrived in Harli's room she was sound asleep.  When the doctor and nurse practitioners made their rounds they told Blair that there would not be an eye appointment today. They first had to have the eye specialist meet with Harli and then hopefully next week she will get her first eye exam.  I am not really sure why they need to meet with Harli because I do not think she is going to tell them anything outside what the doctor already has.  They raised Harli's feedings up from 21cc's to 23cc's.  She is starting to handle them very nicely.  They decided to leave her on the three liters of vapotherm for another day with the hope of trying to lower it again tomorrow.  Harli is starting to have very consistant bowel movements, which means she is keeping Blair busy.

Blair said that the rest of the day went very smoothly with Harli only having one episode as of six thirty.  Blair got to kangaroo Harli for a couple of hours, which I am sure absolutely made her day.  Once the kangaroo session was over Blair got to give Harli a bath.  Blair was very excited today that Harli took her pacifier and actually sucked on it until she feel asleep.  This is a very big step for Harli because before when she would take the pacifier she would quit breathing.  Blair sent me a picture of the pacifier in Harli's mouth and it looks almost as big as her face.

Today Harli weighed 2lbs 12.5 ounces meaning Harli gained .5 ounces since yesterday.  Not a big weight gain from yesterday, but once again we will take what we can get. 

"I will fulfill My purpose for your life, Harli, because my mercy endures forever." Psalm 138:8

February 6, 2012

Last night was another good night for Harli.  She only had a couple of episodes which she resolved on her own.  Our nurse told me that Harli pretty much just laid there and slept most of the night.

When Blair arrived over in Harli's room this morning Harli's nurse told Blair that she had an episode at seven thirty this morning.  Harli did recover on her own, and settled down immediately.  When the doctor and nurse practitioners made their rounds they discussed whether or not to raise Harli's feedings.  They decided to leave her at the 21cc's again today to allow her body to adjust even more.  The doctor did decide to take her vapotherm machine down from four liters to three liters to see how she reacted.  He talked with Blair and told her that Harli did a good job this past week of gaining weight, but he would really like to see a little more.

Harli had a very good day after they lowered her vapotherm machine down to three liters.  She had one episode from eleven this morning until we left this evening at eight.  Blair over heard our doctor and one of the night doctors talking when they were making their rounds this evening.  The night doctor asked our day doctor why they do not move Harli to module five, but our day doctor told her that the family had become very familiar and like the nurses in this module and he was going to keep her here until he did not have a choice.  Now Blair and I are really hoping that we stay in module three because we have built some very nice bonds with our nurses.

Harli's weight today was up a little at 1230 grams, or 2lbs 12 ounces, and I would like to thank Denver for correcting me on my weights.  I have been miss typing the weights when I have been converting them to pounds from grams.Harli had a dirty diaper at every three hours today except for the one at eight, which is the one I had to change.  I knew deep down that girl really loved me!  Tomorrow Harli has her first eye exam and we pray that everything looks good.

February 5, 2012

Today was a much better day for Harli.  Over night she only had two episodes and both of those happened around feedings so they are thought to be from reflux.  She had one bowel movement over night, and other than that we were told it was a pretty quiet night.

This morning when Blair and I arrived in Harli's module the nurses could not wait to tell us what Harli had done first thing this morning.  When the nurses were in the front of the module getting reports from the night nurses they kept hearing a noise but could not figure it out at first.   Come to find out it was Harli crying in her incubator, and they could hear her clear in the front of the module, which is pretty amazing since she is all the way in the back.  The nurses told us that as soon as a nurse would walk over there and lift up her blanket to look in she would shut her eyes real quick and stop crying.  Then the moment they would put her blanket back down she would start crying again.  They said this went on for about a hour and a half.

Today there were not many changes with Harli.  She had about three episodes total for the day and two bowel movements.  They did not raise her feedings since she is having a little bit of a reflux problem.  Harli did loose a little bit of weight, she weighed in at 2.11 lbs.  Since today is Sunday they measured her and she was 14.5" long, which means she grew .5" since last Sunday.  We can not get over the difference in her size, especially when you compare pictures from today to a month ago.  Even though she looks bigger she still looks so small compared to the full term baby in the bed beside her.

They are talking about raising her feedings again tomorrow and then on Tuesday they will check her vision. They say that even on full term babies the eye is not fully developed so they will start checking Harli's eyes to see where they are at.  I am praying that we get good results, but it is something they will have to continue to check for weeks to come.

Taking Harli's temperature.

February 4, 2012

Well the roller coaster ride continues, Harli started having her episodes again last night.  She only had a couple for her night nurse, and she had a couple bowel movements.  Today though was a different story, but before I get to that I will start at the beginning.

When we got to the room Harli was laying there sleeping, and right off the bat she had an episode.  When I got looking though I think it had more to do with positioning because her chin was tucked tight to her chest.  Harli's nurse repositioned her and everything went smooth for a little while.  They raised her milk from 16cc's to 21cc's which means she was on full feeds now.  The nurse practitioner came over and removed Harli's pick-line around noon, and could not get over how well Harli was progressing.  They debated whether they should up her milk slowly or just do give it to her at once.  The decision was made that she had handled her milk very nicely this week even when they raised her feedings.  Needless to say hind sight is twenty/twenty.

They raised her feedings at eleven and she handled it very well.  She really did not have any big episodes just one small one that she corrected on her own. When they checked her residual at two she had a little milk left, which is not uncommon after they raise her feedings, but when we got back to the room she was having difficulties.  She started having several series of episodes where her heart rate was dropping into the fifties, and of course our nurse was at lunch and the other nurses were trying to figure out what was going on.  Finally one of the other nurses realized she was having reflux, and yes it is kind of like the acid reflux which we adults get.  Since Harli has a feeding tube the top of her stomach is always open and the extra milk which she is receiving today kept coming back up.  Harli did not know what to do when the milk started coming back up and she would just quit breathing.  When our nurse returned from lunch they lowered her syringe so it would gravity feed slower than normal, which helped her tremendously.  Our nurse started explaining in more detail about her reflux and how it was causing her episodes.  Let me remind everyone that this is another very common thing among premature babies.  I wish they had a list of things to expect to help Blair and I cope with everything that goes on.

Our nurse explained that tomorrow they probably wont raise her feedings up and by not doing so it will give her stomach some time to grow and adjust to the larger amounts of milk.  She explained that this is something that will probably last until Harli is about thirty-four weeks of age, so we have some time.  Harli did much better tonight when they fed her at five and she seemed to be doing very well when we left at eight.  We can not get over though how much Harli has grown and how she is starting to get the baby fat that most babies are born with.  Harli weighed 1280 grams, or 2.13 lbs.  If she puts on the same amount of weight tomorrow she will have blown through the two pound mark in a week.

This picture shows everything Harli is attached to and if you notice her IV pole is now gone since she does not have her pick-line anymore. 

February 3, 2012

Last night Harli had a great night, she did not have any episodes where her heart rate drops.  She had a couple times where her breathing slowed down, but she corrected herself.  She had a couple of bowel movements and our night nurse reported that she was a wiggle worm all night.

When Blair and I arrived in Harli's room this morning she looked great, she was sleeping and her color looked very good.  When the doctor and nurse practitioners made their rounds and heard that Harli's heart rate had not dropped since her blood transfusion they were very surprised.  The doctor told us that was great news, and he is hoping that maybe with her size now she will not have many more episodes.  They upped her feedings from 12cc's to 16cc's, and still getting the extra calories added in.  The doctor told us that they were going to pull one of the liquid foods she was on and give her a clear liquid tonight and tomorrow, if she handles that well then they will pull her pick-line either this weekend into the first part of next week.  They were very pleased with the weight gain that she had for the week so far and the doctor was very interested in how much she weighed today.

I had the opportunity to kangaroo Harli again today, and her vitals remained very good throughout the whole two hour session.  This was the first kangaroo session that I have had which I did not fall asleep, which is a big milestone and kept the nurses very happy.  Blair had the opportunity to give Harli a bath today with a wash cloth which went very well.

Harli had one large bowel movement throughout the day, and still did not drop her heart rate throughout the day.  She had a couple times where her breathing got low, but she correct it herself.  She handled the 16cc's of milk very nicely and had hardly any residual left when they fed her again. Harli weighed in at 1180 grams or 2.9 lbs. She keeps growing and getting stronger and is now starting to get chubby cheeks which is adorable.

This is a picture showing how Harli gets her milk.

"Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your request to God. And the peace of God, which transcends all understanding, will guard your hearts and minds in Christ Jesus." Philippians 4:6-7

February 2, 2012

Last night was a very rough night for Harli. Around two this morning she lost all her energy and started having episodes which were very difficult to get Harli to wake up.  Our night nurse asked the doctor to see if they could do blood work to figure out what was causing the problem.  When the blood work came back there were no infections, but her red blood cell count was low again.  They decided to give her another blood transfusion, they started the transfusion at seven thirty this morning.  Harli was given the blood over a three hour period, which during the blood transfusion she was not able to get her milk.  The transfusion ended at ten thirty this morning and Harli was able to eat at eleven to get her back on schedule.  They did more blood work after the transfusion and now her red blood cell count is where it needs to be.

The doctor did inform Blair that the blood transfusions are not something to be worried about.  Harli is still to young to produce her own blood, and with the amount of blood they take twice a week for labs they expect her to get low at times.  The doctor said she could have anywhere from eight to fifteen blood transfusions before she is big enough to start producing her own blood to keep up.

Once Harli received the blood she had a really good day. I got to kangaroo Harli for two hours, and during those two hours her vitals remained very good.  Getting to hold Harli was exactly what I needed today, and hopefully I get the chance to hold her again tomorrow.  She did not have a bowel movement today so I am sure the night nurse is going to have fun.  Throughout the whole day Harli did not have one "brady", where her heart rate drops, but she did have a couple of times where her breathing slowed down.  The night nurse thought the one time she was trying to have a bowel movement because she could hear her grunting. Then Harli got the hick ups and she had trouble breathing during those.

I hope that Harli continues to show great progress throughout the night, and rests a little so she can grow.  Since receiving her blood she did not lay still except for the two hours which I was holding her.  Our nurse said after seeing how much the blood changed her energy they will probably start checking her red blood cell count weekly to see if she needs another transfusion.

Harli weighed in at 1120 grams or 2.75 lbs, which is up two ounces. We also have to take into consideration that some of the weight is because of the blood which she received, but we will still take every ounce we can get.

The tape and pad on Harli's right hand is where her IV was placed for her blood transfusion.

"For it is God who works in you to will and to act in order to fulfill his good purpose." Philippians 2:13

February 1, 2012

Today was a good day for both Blair and Harli.  I called over on my way to work this morning and Harli had a good night.  She had four episodes, only two requiring stimulation, and she had two bowel movements. 

When the doctor and nurse practitioners made their rounds they are still very pleased with Harli's progress.  Harli's nurse practitioner brought up the amount of episodes she is having, but the doctor said he was not worried because they were inside the range of her episodes.  The doctor is still confident that her episodes have more to do with positioning than anything else.  He did say there are a couple times when she has episodes it is because Harli falls asleep and quits breathing, but in either case they are normal for a premature baby her size.

They raised Harli's milk from 8cc's to 10cc's and started adding calories today.  The doctor and nurse practitioners are very pleased with how she is handling the milk, and with the bowel movements she is having.  They upgraded her diaper to the next size up, which to me was surprising since it seemed like the old diaper was still to big.  I guess that is why we leave these decisions to the professionals and not the Blair and I.  Harli's weight was down a little at 1050 grams, or 2.5 lbs.  Hope these calories they are giving her does the job and allows our little angel to start putting on weight and gaining more strength. 

Blair continues to get better with each day.  She only has a few more days where she has to pump and dump her milk, and I'm sure it will make her feel much better when she starts pumping for a reason.  Blair was able to kangaroo Harli for two hours today, but Harli had two episodes while she was holding her, I think Harli misses the chest hair tickling her to keep her awake.  Blair said it was very scary, and the nurse was not sure if Harli feel deep asleep or if they were caused by positioning.  Blair said other than that it was amazing, so I am glad she is enjoying her.  I can not wait to get out there and hold her myself. 

Pray that Harli continues to grow and put on weight and that hopefully soon the doctors and nurses can remove her pick-line.  That will be another big milestone when we get to that point.

The diaper on the right is her new diaper and if you look at some of the pics it covers more than half her bottom.