February 29, 2012

Last night was another wonderful night for our little angel.  She only had one episode around nine, and then she fell asleep and stayed asleep until five this morning.  I had to thank our nurse this morning for teaching our daughter how to sleep through the whole night. 

Today was an eventful day for both Blair and Harli.  Harli had four episodes throughout the day which is a little more than she has been having.  This could just have a little to do with the fact that she is having to work a little harder for each breath.  The nurse said that with two of her episodes she was able to recover on her own, but the other two required a little bit of stimulation. 

Today Blair was going to get to do something that we have been waiting on for a long time.  She was going to get the chance to do non-nutritive breast feeding.  This is when Blair goes and pumps and when it is time for Harli's normal feeding time they put Harli with Blair to see if she tries to breast feed.  I guess things went better than any of the doctors or nurses thought it would go.  So hopefully with this news it wont be long before she is actually able to start breast feeding.

Our precious angel weighed in today at 1760 grams or 3lbs 14ozs.  Harli has now gained two pounds since she was born.  It is amazing how everyday she continues to impress Blair and I with her strength, we serve an amazing God.  She is possibly just a few ounces away from being put into a crib, wow what a step and change that will be for everyone.

"Jesus told him I am the way, the truth, and the life.  No one can come to the father except through me."

February 28, 2012

Harli had a good night again last night.  She made it through the whole night without an episode.  She continues to have bowel movements, and is continuing to keep her body temperature up as they lower the temperature in her bed.

Today was another good day for Harli.  The doctor and nurse practitioners made a few changes for today.  They have raised her feedings to match with the weight gain she has been having.  They also lowered her vapotherm machine down to one liter.  This is the lowest she has been to date, and if everything goes smoothly there is a chance by the end of the weekend to just be on straight oxygen.  They changed her vapotherm today around one, and when we left tonight at eight she had only one episode, which she brought up herself.

They lowered her bed temperature down to 26.5ºC, once they get her bed down to 26ºC and can keep her body temperature up then she will just be waiting on her weight gain to graduate to a crib.  They had her wrapped in a blanket today to help her keep her weight up, but apparently she has a little to much of my blood in her body because her temperature was at 37.4ºC.  Her body temperature normally runs at 36.5ºC so she was a little warm.  Once they unwrapped her and just put a blanket over her she had no problems.

Today Harli weighed in at 1730 grams, or 3lbs 13ozs.  If everyone remembers the doctors will start considering putting her in a crib at 1800-2000 grams.  Once again this is totally up to Harli and I'm sure she will tell us when she is ready to make that change.  The nurse practitioner told Blair today that when Harli reaches thirty-four weeks they will start the breast feeding and bottle feeding.  It is truly amazing at how well our daughter is doing, but Blair and I both understand that none of this would be possible if it weren't for our amazing God.  Everyone following our families roller coaster ride has given so much support through prayer which has made all of this possible.  We would like to thank everyone for every prayer they are praying.

"Though I walk in the midst of trouble, you preserve my life; you stretch out your hand against the anger of my foes, with your right hand you save me."  Psalm 138:7

February 27, 2012

Last night was another great night for Harli.  She did not have any episodes and slept for almost the entire night.

Today was another good day for Harli, but not as good as last night.  She had one episode today, which she corrected herself.  She continues to have bowel movements.  The doctor and nurse practitioner decided not to make a change on her vapotherm machine since she only had one twenty four hour period without an episode.  I guess this morning Harli was in a very energetic mood because I guess she did not hold still all morning.  She then spent most of the afternoon sleeping.  Early this morning they did more blood work on Harli and she is starting to low on blood again.  I doubt they will give her blood anytime soon though since she is not having much trouble.  Hopefully soon our daughter will be able to start producing her own blood.

Harli gained another ten grams today putting her at 1690 grams, or 3lbs 11.5 ozs.  She continues to get bigger each day, which the bigger she gets hopefully the less episodes she will have. 

"You can know and depend on the love I have for you." 1 John 4:16

February 26, 2012

Last night was a very good night for Harli, she only had one episode which she corrected herself.

Today was a first for little miss Harli.  She made it through the whole day without an episode.  This is a very big step for her, and hopefully we can keep the trend going. Other than not having any episodes it was a pretty quiet day here at Riley. She continued to handle her 29ml of milk nicely and everything continues to move through her body correctly.  Blair stayed in the room today with a runny nose and did not want to take any chances.  Since Blair had the runny nose I chose not to kangaroo just to be on the safe side.

Depending on how tonight transpires they might try turning down her vapotherm machine tomorrow.  That will be another milestone for Harli, meaning it will be the lowest that it has ever been.  They continue to turn down the heat in her bed to see if she can control her body temperature on her own. So far that has been working out pretty well.

Today they measured Harli and she is at 16.25" long meaning she grew three quarters of an inch since last Sunday.  Harli continues to gain weight putting her at 1680 grams, or 3lbs 11ozs.  I hope tomorrow in rounds they tell Blair how much she has gained for the week because I'm sure its a decent amount.  Our little girl continues to take steps in the right direction, and we continue to ask for prayers in support for our family.

"With man this is impossible, but with God all things are possible."  Matthew 19:26

February 25, 2012

Harli once again had a good night last night.  She still only had one episode throughout the night, and handled all her feedings well.

Today was not much different.  Throughout the whole day she had one episode, which she corrected on her own. They raised her feedings from 27ml to 29mls, and she has responded well by taking all the milk. Harli remains on two liters on the vapotherm machine at twenty-five percent oxygen.  We are still waiting on the first dirty diaper since last night though, but I think from the way she was acting that it is not far away.

Tonight I got to kangaroo Harli for almost two hours.  She did have a couple times tonight where her vitals were not the strongest.  Her heart rate only dropped once, but her blood oxygen continued to keep going up and down.  Once we put her back in her bed she seemed to settle down a little.  I do know while I was holding her she seemed to be getting a little bit of water through her oxygen tube which might have caused some of the breathing problems.

Harli gained ten grams today putting her at 1640 grams, or 3lbs 10ozs.  She has had good weight gain throughout this whole week and I can't wait until tomorrow when they measure her to see if she has grown in length.

February 24, 2012

Last night was another great night for Harli, she only had one episodes.  So in a twenty for hour period she had four episodes, which means they left her on the vapotherm machine at two liters.

Today was another good day for Harli.  She only had two episodes, so apparently raising her caffeine has helped stimulate her.  She still remains at two liters on the vapotherm machine, which is running around twenty-five percent oxygen.  She is continuing to handle her feeds nicely and continues to have bowel movements frequently.  Today though she did have mucus coming out of her nose.  The doctor and nurse practitioner said this could be from different things.  One is that the vapotherm machine going into her nose lets a little bit of water through every now and then which could just be loosening things up.  It could also be because she is getting a cold.  The reason they think it is from the vapotherm machine is because her breathing remains strong.

Today Blair got to kangaroo for two and a half hours.  I was planning on kangarooing Harli tonight when I arrived, but instead I was able to hold Harli like a normal new born for the first time.  Kangarooing is pretty amazing, but this feeling topped that.  During both, Harli's vitals remained perfect and it seems like she is breathing a little better.

Tonight our nurse and Blair surprised me with Harli's outfit.  She had a green bow in her hair and had on John Deere socks.  They also retrofitted her outfit to make it look like a John Deere outfit, which looked very nice with her blanket.

Standing with the two most beautiful women!

"Praise be to the Lord, to God our Savior, who daily bears our burdens." Psalm 68:19

February 23, 2012

Last night was a good night for Harli.  She only had one episode, and continues to have bowel movements.

Today the doctor and nurse practitioner made a few adjustments with Harli.  They raised the amount of caffeine to help stimulate her lungs more.  They also lowered her vapotherm machine from three liters down to two liters.  The doctor and nurse practitioner said they would allow Harli to have five episodes and if she had more than five they would raise the vapotherm machine back up to three liters.  When I talked to Blair at 6:30 Harli's had four episodes so it is going to be close.  I guess she will tell us what she wants to do, not the other way around.

Harli gained sixty grams today putting her at 1610 grams, or 3lbs 8.5ozs.  Since she is over sixteen hundred grams they decided to dress her.  Now that she is 32 weeks old they have removed one of the blankets on her bed since she is allowed to have more light.  Blair was able to kangaroo for three hours today and Blair said that she handled it great.  Blair said that she continues to move constantly and does not sleep quit as often.

Our nurse made this for us yesterday.  Its awesome!

February 22, 2012

Last night Harli kind of fell back into her old ways.  She had six episodes throughout the night, which is not horrible, but more than Blair and I would like to see.

Today was a much better day.  When we left tonight at eight she only had two episodes.  The doctor and nurse practitioner decided to leave her on three liters of vapotherm another day before trying to lower it.  Harli continues to gain strength, and loves to move around.  She is getting to the point where she does not sleep all the time, but rather lays there wide awake and looking around.  Harli continues to not like being bundled up, and manages to get herself free every time.

Blair was able to kangaroo Harli today for about an hour and a half. It was not a very long session because I was also able to kangaroo Harli tonight so Blair did not want to push her to much.  (Which at first Blair and our nurse had me convinced that Blair went ahead and kangarooed and I was not going to get to.  I tried to pretend that it did not bother me, but deep down I was crushed.) It is the first time that both Blair and I were able to kangaroo Harli on the same day.  Needless to say we were both having a wonderful day.

Harli gained some more weight today.  She is now at 1560 grams, or 3lbs 7ozs.  They still have held off dressing her until she puts on more weight since last time she lost a little.  Harli is making progress everyday and we continue to pray for her daily that she continues to improve.  I know that everyone is busy in their day to day activities, but Blair and I ask that you not only keep us in your thoughts but also in your prayers.  Throughout our "roller coaster" we continue to be amazed with what the power of prayer can do.

"Come to me, and I will give you rest.  Take my yoke upon you and learn from me, for I am gentle and humble in heart, and you will find rest for your soul. For my yoke is easy and my burden is light."  Matthew 11:28-30

February 21, 2012

Last night Harli did wonderful, she only had one episode.  Our nurse told us this morning that in the middle of the night they looked in and Harli was laying cross ways in her bed.  She had one foot proped up and she was just sound asleep.  There is absolutely no doubt that she is her mothers daughter!

Today was also a very good day for Harli.  She only had two episodes as of six thirty tonight and one of those occured during her eye exam which was not a surprise to anyone.  She continues to have bowel movements and today they raised her milk from 25cc's to 27cc's to catch up with the weight she has put on.  They left her vapotherm machine alone today since she was having her eye exam, they did not want to push her to much. 

The eye exam went very well.  I guess she is a Level 2, the levels are 1-3 one being the worst and three being the best.  They said the blood vessels in her eyes are forming the way they should be and that they would check her again in two weeks.  Blair said that it was the hardest thing in the world to watch with her screeming and crying during the whole exam. Blair said they did not seem concerned about anything, and if they would have found a problem they would be checking her weekly and not every other week.

Blair was able to kangaroo tonight for three hours.  Harli's vitals remained perfect during the three hours and Blair said she was perfect for her.  Blair said that it was the highlight of her whole day. Harli weighed 1500 grams, or 3lbs 4ozs, which means she has put on a little weight since yesterday.  Our nurse and Blair weighed her six different times making sure they had the weight correct since it showed she gained sixty grams since yesterday.  They decided not to dress her today though since last time they dressed her right away and she ended up losing weight.

I absolutely love this picture.

"I will save you in the midst of your troubles." Psalm 138:7

February 20, 2012

Harli was a trooper last night, she only had three episodes.  Our nurse said she pretty much just slept all night, and really only moved when she was getting her diaper changed.

Today was another day to where the doctor or nurse practitioners did not change anything.  They were still continent on leaving things the same to see if she would continue to grow.  She is still on three liters of vapotherm, 25cc's of milk with calories added in.  She continues to have bowel movements. She had one tonight at five, and I was very upset since I was not here in time to change it.  Her weight continues to go up, but just a little slower which is good as long as she is staying healthy.

Today the doctors asked to if they could try a new procedure on Harli.  They were wanting to try an ultra-sound machine hoping it would help locate veins for procedures like an IV or a pick line. I guess they just ran the ultra-sounds machine over her hand, forearm, and feet to see if it helps pick up the veins, or it is something that would not work with preemies.  They were able to see the veins so hopefully they will be able to start using the ultra-sound machine instead of having to poke the preemies so many times.

Blair was able to kangaroo Harli for almost three hours.  I think they both needed this time together, because Blair's smile lit up the room tonight.  Harli's vitals remained perfect the whole time Blair was holding her, and for the most part she laid still and just slept.  Harli weighed 1450 grams, or 3lbs 3ozs again.  Another fifty grams and Blair gets to start dressing her again!

"If we confess our sins, he is faithful and just and will forgive us our sins and purify us from all unrighteousness.  If we claim we have not sinned, we make him out to be a liar, and his word has no place in our lives." 1 John 2:5

February 19, 2012

Last night was much smoother for Harli.  Harli only had two times where her heart rate dropped, which is a very big relief for both Blair and I.  She had a couple bowel movements and other than that she was a good little angel.

Today was not much different.  She had two drops in her heart rate this morning when we first got into the module, but after that it was pretty smooth sailing.  She is still having some periodic breathing, but she catches herself before the monitors would alarm.  The doctor and nurse practitioners left everything the same since she was handling things very well.   She is still on three liters of vapotherm, and getting 25cc's of milk every three hours.  She is continuing to have bowel movements which is a very positive sign.  They did remove her IV today after it went bad and was not able to take fluids. They are back to giving her extra calories in her milk so hopefully she will start putting on weight.

Today they measured her length and she is now fifteen and a half inches long, which is a quarter of an inch longer than last Sunday.  Her weight was 1440 grams, or 3lbs 3ozs.  She is slowly starting to put the weight back on so hopefully here this week they will get to start dressing her again. I know Blair can not wait, she has the outfits washed and ready.  Tonight when Blair and I were leaving the module I think Harli was trying to get our attention because she dropped her heart rate.  I guess she does not like the idea any more than we do about leaving.

We wanted to thank everyone again for their support during this difficult time.  We could not make it through our "roller coaster" ride if not for the prayers we are receiving from so many.  Thank you for everything and please continue to pray for the Culy family.

"For the Lord is good and his love endures forever, his faithfulness continues through all generations."  Psalm 100:5

February 18, 2012

Last night Harli had a rough night.  She had twelve times when her heart rate dropped, and I think she also had nine times when her breathing dropped.  This did not come to a surprise to Blair and I because we were there for the first six times her heart rate dropped.

This morning when we walked into the module our nurse practitioner walked over to Blair and told her about her rough night.  She told Blair that she had already written orders for a blood transfusion and they were in the process of putting an IV in Harli.  When we got over to Harli we noticed how pale she was, but other than that she was doing good.  They got the IV in the first stick, but apparently Harli was able to catch it on her bedding because she pulled it out so they had to set another one.  The second one stayed in and they started her blood transfusion at eleven, it was again scheduled to be given over a three hour period with no feedings during that time.  During the blood transfusion you could see her color coming back to her, but when it was finished she still was having apnea problems.  The nurse practitioner wrote to have her CBC, complete blood count, checked to make sure everything was good. They came back to where she does not have an infection and her red blood cell count is in the correct range as well.  They also decided to change her vapotherm machine from two liters to three liters, and that made all the difference in the world.  Once they changed the vapotherm machine she only had one apnea over the next six hours, which is good for Harli.

Harli did have a couple of bowel movements today and when they weighed her she weighed 1420 grams, or 3lbs 2.5ozs.  Since her weight has dropped they had to remove the clothes until she gets back to fifteen hundred grams. Blair and I decided not to kangaroo today because of how excitement there was. We are praying for a peaceful night for Harli so maybe tomorrow one of us gets a chance to kangaroo.

Harli giving daddy a high five!

"Not everyone who says to me , Lord Lord, will enter the kingdom of heaven, but only the one who does the will of my Father who is heaven."  Matthew 7:21

February 17, 2012

Last night Harli had one bowel movement and four episodes. One of those episodes required much stimulation, but the other three she was able to resolve on her own.  Other than that she had a pretty restful night.

Harli had a really good morning into the early part of the afternoon. She had one episode which she resolved on her own.  The doctor and nurse practitioner's did not make any changes with Harli today.  They left her on the two liters of vapotherm, and left her milk at 25cc's.  They still have not given Harli a blood transfusion, but the later in the night you could tell she is running out of steam.  She had about six episodes from the time I got out here at five thirty until we left at midnight.  Most of those episodes required some sort of stimulation.  Blair and I are hoping that maybe tomorrow the doctors will reconsider holding off on the blood transfusion, but we will just have to pray about it and leave it up to God.

Blair was able to kangaroo Harli for two and a half hours.  While Blair was holding her she had very periodic breathing and Blair had to stem her a couple times to keep her breathing up before they turned into episodes.  When Blair got done kangarooing Harli had a bowel movement, which I still think is a conspiracy, so dad got the chance to change another dirty diaper.  I still say that she had that dirty diaper for a couple of hours but they were just waiting till I got there so I could change it.  She also had another bowel movement later in the night so things seem to be functioning pretty well.  Blair and I are not sure if there was a mistake today when Harli was weighed, but she lost eighty grams putting her back to 3lbs 2ozs.

"God is good all the time, all the time God is good."

February 16, 2012

Harli had a good night last night, once again she had a few episodes but she was able to resolve those on her own.  Our nurse kept Harli dressed all night and Harli was able to keep her temperature steady.  Harli's milk rations also got raised once throughout the night.

Harli had a pretty decent day today.  When the doctor and nurse practitioner's made their rounds they decided to lower the vapotherm machine to two liters per minute.  They also set the schedule for her milk to be raised three times throughout the day, as long as she tolerated them.  Once the vapotherm machine was lowered Harli handled the change very well and just had her normal episodes, but most of her episodes were all self resolved.  At noon today they discontinued the fluids through her IV so the only food she is getting now is Blair's milk.  They are going to leave the IV in her hand so when they write to have the blood transfusion hopefully they won't have to stick her again.  The reason they did not end up giving the blood transfusion today is because they would have to stop the milk.  Since they wanted to get her on full feeds so they do not have to worry about the IV going bad or having to put in another pick line.

Blair had her six week check up today which went very well.  While Blair was at Henry County hospital she was able to walk over and talk with a couple of the nurses she had.  They were very happy to get a personal update on Harli, which made Blair feel good.

Blair got to kangaroo Harli tonight, but it was a shorter session since we were about to fall asleep due to a very short night last night. While Blair was holding Harli her vitals remained decent, but had a couple times when her breathing would slow down a little.  I think she just did not have the chest hair tickling her to keep her awake.  Harli weighed 3lbs 4.5ozs today, so another nice jump in weight for the little fighter.

He replied, "Because you have so little faith.  I tell you the truth, if you have faith as small as a mustard seed, you can say to this mountain, Move from here to there, and it will move.  Nothing will be impossible for you."  Matthew 17:20-21