January 31, 2012

This morning when I called the NICU to see how Harli's night went I got a great report.  She only had three episodes and only one of those episodes required stimulation.

When Blair talked with Harli's nurse this morning she filled her in on the amount of episodes she had over night.  Harli also had a couple of bowel movement throughout the night which are always a great sign. When the doctor and nurse practitioners made their rounds today they were very satisfied with the progress Harli is making.  The doctor told Blair that they were going to raise Harli's feedings from 5cc's to 8cc's because she was tolerating them nicely.  They are then planning on raising her feeding to 10cc's tomorrow, and then Friday they will start adding extra calories in Blair's milk.  They add the extra calories in the milk so they do not have to keep doubling the amount of milk, but Harli can still get the amount of calories needed to grow.

Blair was able to kangaroo Harli for two and a half hours.  The nurse mentioned that Harli's vital signs were perfect during her kangaroo session, which always makes us feel good.  Harli had a few bowel movements throughout the day, which is a good sign the intestines are working properly.  The more milk they are giving her the more bowel movements she is able to have, we continue to pray that her intestines continue to heal properly.

Harli is still on four liters on the vapotherm machine with twenty-four to twenty-eight percent oxygen.  The doctor came by tonight and told us that he is not concerned about her still being on the vapotherm machine, but he wants to hopefully get Harli off the liquids this weekend into the first part of next week.  Once she is off the liquids and completely on milk they will remove her pick-line to help avoid any infections.  The doctor mentioned that one reason he still feels that Harli is having her episodes is because of positioning.  He said her neck muscles are not strong enough to hold her chin up and occasionally she puts her chin down and blocks off her airway. He said hopefully she will continue to grow on the milk and then her breathing issues will hopefully be dissolved.

Tonight I was able to take Blair out for a nice dinner for our anniversary.  This is the first time to date that both of us actually went somewhere together other than the Ronald McDonald house.  It was nice to get a chance to be the two of us away from everything even though it was only an hour and a half.  We were able to enjoy ourselves at dinner with no interruptions.

We got back into Harli's room and were able to help with care at eight.  Harli had another bowel movement and I was not so lucky to get out of this one.  I did try, but between our nurse and Blair there was no choice.  Harli has once again gained a little bit of weight.  She weighed 1,060 grams or 2.5 lbs, we will take every ounce we can get. Harli finished the day with a total of four episodes, two of those episodes did require stem.

This is what our nurse made us last night for our anniversary.  We thought it was AWESOME!

January 30, 2012

This morning when I got up I called to check on Harli and got a good report from Harli's nurse.  Harli only had three episodes last night, and they did not all require stimulation.  I talked with Blair this morning before work and she was doing great. 

Blair was with Harli when the doctor and nurse practitioner made their rounds.  They said they have plans to up her feedings on Wednesday, and if everything goes good they will increase them again on Friday.  The doctor and nurse practitioner's said that Harli is having less episodes, and of those episodes she is requiring less stimulation.  The doctor said that they would like to see her gain more weight on a day to day basis, but they did say they would take what they could get. 

Blair got the chance to kangaroo Harli today for three and a half hours.  The longest session to date for either one of us, can I say that I'm jealous.  Blair said that while she was holding Harli the monitor started going a little crazy and she was starting to get very nervous.  One of the nurses walked over and picked Harli up to find out that her leads had fallen off.  Blair said that was as scared as she had been in a while.  Blair said other than that Harli's vital signs were great throughout the whole kangaroo session. 

Last night was a very rough time for myself.  As long as I was busy doing things around the house I was handling it decent, but the moment I stopped my emotions would start.  Blair and I were able to talk until she fell asleep with her phone on viberate, then she could not hear me trying to call her.  The good news is that Blair was able to get a full night of sleep, the bad part was that she did not hear her alarm to wake up and pump.  Today was my first day back to work, the work part went well, but the part of missing Blair and Harli was difficult.  I was able to get a couple pictures today of Blair holding Harli, and Blair did a great job of keeping me updated to any changes. 

They weighed Harli today and she weighs 2.4 lbs.  The doctor wanted more weight gain and he got it, she gained two ounces since yesterday.  Blair mentioned that her weight might be down tomorrow after the bowel movement she had tonight.  I guess it was a good thing I was not on call for that one.  Harli did have five episodes today, which was up a little, but the nurse said that a couple of them were due to other things.

All bundled up

Adorable

My two favorite women

Blair, Harli, Ashely (our nurse)

All stretched out

They changed all the cords and pads on her chest and stomach.

P.S. Tomorrow night the blog might be a little late.  I am taking Blair out to eat for our anniversary.

January 29, 2012

Today was both a good and bad day for the Culy's at Riley.  Blair and Harli both had good days which is the most important part of the day.  The only bad part of the day is that I had to come home so I can start going back to work.

Harli's nurse told us that Harli only had a couple episodes over night, and only one of those episodes required stimulation.  Harli is still on four liters of vapotherm, which is keeping her very content.  She had a couple bowel movements overnight, and had a couple more throughout the day.  Her color has gotten to the point where she looks like a full term baby, now we just need her length and weight to catch up.  Harli was very active again today, and kept the nurses on thier toes by having to keep trying to bundle her back up. 

The doctor raised her milk up to 5cc's from 3.5cc's every three hours.  When they checked to see how much she still had left before feeding her more she always had less than 1cc. The nurse said that they do not get alarmed until she has the same amount of milk left which they are feeding her.  They are still talking that they plan to have her on full milk by Friday if everything goes smoothly.  Every time they raise the amount of milk she is getting they back down the amount of fluids. 

I ask that you pray for our family during this transitional period.  It is not easy leaving Blair and Harli in Indy, but also understand that it is something that has to be done.  Blair's dad was able to come down and stay with Blair the first three days of the week and her mother is going to be able to come and stay the last two days.  I am planning on getting out their as much as I can throughout the week, but still have not set a schedule.  We continue to thank everyone who is keeping our family in their thoughts and prayers.  It has given us great comfort to know we have the support of people all over several communities.

This attempt failed, she liked it but forgot to breathe. 

January 28, 2012

First of all I wanted to answer a question that I received throughout the day.  In some of the pictures Harli has a patch on her head, this patch is her IV they placed for the blood transfusion.  They originally tried in Harli's foot but were unsuccessful. Since she is so small the easiest place for an IV is the head and that is suppose to be the least painful, even though it looks horrible.

Today was a day that the Culy family needed.  We had a good report from our nurse, Blair was feeling so much better and was able to visit Harli.  Last night Harli only had two episodes and only one of those required stimulation.  There were not many changes throughout the day.  They did raise Harli's vapotherm machine from three liters back to four liters per minute.  They did not see much change the last time they tried this, but figured it was not going to hurt her only help.  They did mention again about putting her on CY-PAP but decided they would wait and see how she responded to the four liters of vapotherm.

Harli was quit the wiggle worm today.  It did not matter which way the nurses laid her, she would decide it was not the way she wanted.  Harli continues to have the strength to move her head from side to side, but occasionally gets stuck in the middle.  She did not mess with her tubes at all today which was very surprising.  Harli has been having more frequent bowel movements, she had one at eleven last night, and another one at five this morning.  Harli's IV that was in her head was removed last night after it quit taking saline.  Harli for the most part has been eating all her milk even though they had raised it from 2cc's to 3.5cc's.  They are hoping if everything goes good this week by Friday they will have her on full milk and no more liquids.  We will continue to pray for a successful week, but will not get our hopes up incase it does not happen.

Tomorrow they will measure her length again.  Today she weighed 2.1 lbs which is up one ounce from yesterday.

Harli giving it all she has to stand up.  Not sure she is ready for it though. 

All of a sudden she got camera shy.

Relaxing now that she is free.

Kind of looks like she is in a straight jacket.

"So do not fear, for I am with you; do not be dismayed for I am your God.  I will strengthen you and help you; I will uphold you with my righteous right hand."  Isaiah 41:10

January 27, 2012

Today when we woke up Blair's rash had really subsided.  She still had it on her legs and arms, but her chest and face were now clear.  Her mastitis was not giving her any trouble either which is a huge relief.  She did however decide to stay back at the room another day so she could rest and continue to let her body heal.

When I showed up at Harli's bedside I got a very good report from our nurse.  Harli only had three episodes over night, which she resolved two of them on her own.  When the doctor and nurse practitioners made their rounds they were very satisfied with the progress Harli has made, they did not have any tests planned for Harli they just raised her amount of milk she is getting every three hours.  She was raised from 2cc's of milk every three hours to 3.5cc's.  Harli seemed to handle the extra milk well, leaving between .5cc's to 1cc every three hours.

I brought Blair lunch today, which is the first time I had remembered to do that all week so I was very proud of myself.  I think I scared the life out of her when I came walking into the room.   It was very nice to see that the rash had gone down even more in the few hours I was away.

When I arrived back in Harli's room I was able to kangaroo Harli for a total of two and a half hours.  I have no clue what I'm going to do next week when I have to go back to work and wont get my cuddling time with Harli.  Today was the worst kangaroo session Harli has had to date, and it was not because of her episodes.  She would not hold still long enough for me to take my nap.  She moved from side to side, she even fell down my side and to the back part of my shirt, which was very awkward to pull her out.  Her numbers were very good though and she seemed to be enjoying herself which is all that really matters.

When I did Harli's care tonight at five she had a small bowel movement which was very nice to see, and yes I tried getting out of the diaper change again but was unsuccessful.  Our nurse was able to keep Harli on her back all day until about five thirty tonight when she started throwing a fit.  They are trying to keep Harli's head as uniformed as possible by having her stay on her back as long as possible everyday.

When I arrived back at our room tonight Blair's rash is almost completely gone.  She has her normally color back and she was in a real good mood which was very uplifting to see.  I think she is going to try to venture out tomorrow to the hospital, so I hope that she is out of the woods and she does not have to keep fighting this.

One of the few times today we were able to keep her limbs contained. 

She finally got her legs out.

One arm and one leg will do for now.

Finally decided to just let her be free for a little bit.

Got her contained and her head held in place.

"Therefore do not worry about tomorrow, for tomorrow will worry about itself.  Each day has enough trouble of its own."  Matthew 6:34

January 26, 2012

This morning when we woke up Blair had a rash all over her body so we made a trip over to the ER to have it checked out.  We found out that Blair is apparently allergic to the antibiotic she has been on so they gave her some benadryl and switched her antibiotic.  I guess the good news this morning we did not have to spend much time updating information at the ER and also at the pharmacy.

8:30a.m. I stopped by to check on Harli while I was waiting on the pharmacy to fill Blair's prescription.  Harli got her blood transfusion last night, and she also had a rough night with several episodes.  Most of Harli's episodes were corrected by herself, but the number keeps increasing.  I guess when the doctor and nurse practitioners made their rounds this morning they decided to leave her on the vapotherm machine for another day, but depending on the number of episodes will make the decision whether or not she gets switched to CY-PAP.  The doctor and nurse practitioners are hoping that once her body gets adjusted to the extra blood that her episodes will decrease.

I brought Blair's prescription back to the room and stayed with Blair most of the day.  I called periodically to check on Harli, and got all good reports.  Blair's rash has spread in some spots but has gone down in others.  Her fever is as low as its been since Tuesday so I am assuming the benadryl is working now we just have to be patient that the rash disappears.

4:00p.m. I headed over to Riley to check on Harli and the nurse gave a pretty good report.  Harli had three episodes to that point and only two of those episodes needed stimulation.  While I was standing at Harli's bedside her nurse practitioner came up and checked on Blair and so did one of her day nurses which meant so much.  Harli slept most of the time I was there, but at six tonight Harli decided it was time to wake up and move around.  She spent an hour and fifteen minutes moving around as much as possible, it wore me out moving from one side of the bed to the other to see her face.  When she was done moving though she crashed and had another episode which did not require stimulation.

I ask that everyone continues to pray for our family and especially that our spirits stay positive.

January 25, 2012

So today was another interesting day here at Riley, when you think that things are going to calm down you better think again.  When we woke up Blair's fever was back and so she stayed in the room.  I headed over to Riley and was there pretty early.  Harli's nurse told us that she had a rough night last night, she had quit a few episodes but thankfully she was able to resolve most of those on her own.  When I lifted the John Deere blanket to see how Harli was doing I opened it to her big eyes just looking up at me.  She was wide awake and wanted everyone to know it, she wouldn't hold still for anything.

The doctor and nurse practitioners made their rounds and were very concerned with the increase in Harli's episodes.  They are not sure what is causing them, but they had three ideas.  The first idea is that Harli's red blood cell count is low, meaning she would need another blood transfusion. If this is the case that might explain why she tires down and forgets to breathe.  The second idea would mean to check her white blood cell count and see if she has an infection from her pick line.  The third idea is that because of her premature nature she can not control her head and drops her chin which cuts off her air way, but her brain can not comprehend that so she does not move her head back up.  The doctor ordered blood tests to be done to see which one of the three ideas it was.  The blood was written to be drawn at 2:00p.m. after her kangaroo session with her daddy.

11:00a.m. Harli's care times have changed now that she is being fed milk.  Instead of doing her care every four hours we do it every three because she gets fed every three hours.  When I got in there to change her diaper our nurse noticed that she had a "HUGE" bowel movement.  We had to change everything, from her diaper to her blanket.  I tried telling our nurse that I had to go eat lunch but she did not let me out of the situation.  I then tried convincing her that I took care of all the wet diapers and Blair said she was going to take care of all the dirty diapers.  I guess our nurse has figured me out though, since I ended up changing her diaper.

I got the privilege to kangaroo Harli again today for a two hour session.  Once again while holding her she did great until the end when we started to put her back.  She had another "brady", when the heart rate drops, which we stimulated her since I was in the process of picking her up off my chest.

2:00p.m. Harli's nurses drew her blood and sent them to the lab.

2:30p.m. Blair and I made a trip back over to the IU Emergency room since her fever had spiked to 102 degrees.  We had more success over there today since it only took us a total of an hour which was much better than our first visit of three hours.  The nurse practitioner took a look at Blair and it was pretty obvious that her mastitis was back.  The nurse gave her another antibiotic to take with the one that she was previously taking.  While taking this new antibiotic though Blair would have to pump and dump since it will get into Blair's milk.  I even checked with the pharmacist, Harli's nurse practitioner, and even Harli's doctor.  They all concluded since Blair has so much milk on stock that it would be safer for her to dump the milk over the next ten days.

5:30p.m. I was able to get Blair's prescription filled at the pharmacy here at Riley, which has made everything more convenient.  I did notice thought that the lady who works the desk at the pharmacy called me by name, which I do not think is something to be proud of.  Anyways I was able to get the medicine over to Blair so she could take them and get back to bed.

6:30p.m. The lab had Harli's red blood cell count finished and her results were low enough to where they wrote for a blood transfusion.  They will give her thirteen ml over a three hour period starting at eight tonight.  While doing the blood transfusion they will not feed her milk so Harli will miss her feeding at eight, but should still get her feeding at eleven.

9:15p.m. Harli's white blood cell count is still not finished and I  am waiting on a call from our nurse.  As soon as I find something out I will add it onto tonight's posts and highlight it in yellow, so if your reading this and you are curious check back.  The nurse was going to check again at 9:45p.m. and call me if she has the results. Harli's nurse just called and said her white blood cell count is good so there is no infection.  Let us pray that the blood transfusion allows Harli to have more energy and less episodes.

9:22p.m. I am done writing tonight and now I will add the best part.

Finally got her legs free.

Just proving she can move however she wants

Stretching out her legs

Nap time they got her all contained except one leg.  Blair made a good point about this picture, when she is all stretched out her whole body does not fit in the picture anymore.

"For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future." Jeremiah 29:11

January 24, 2012

Last night was a late night waiting up for the final x-ray result.  The worst part about the wait was when I called in to get the results the night nurse informed me the x-ray technicians never discuss the results with the night staff.  So pretty much I waited up all night for nothing, but Blair was able to get a good nights rest which is important.

Blair and I arrived in the module quit early and waited for the doctor and nurse practitioners to make their rounds to finally get results.  The results were good and the test showed no signs of a hole in the intestine, what an answer to prayer.  The doctor did inform Blair and I that the hole was healed but they would still have to keep a close eye on the intestine over the next three to five weeks.  The doctor explained that most of the time when an intestine heals it will shrink at that spot of the intestine causing it to back up the process.   He told us that if her intestine shows signs of it shrinking that they would then have to go in and remove that section.  He said the good part of this situation is in three to five weeks she should have some size on her to where the surgery will not be as hard on her body.  I just pray that she does not need any surgery and she starts growing and putting on weight.

Now that her intestine is healed they started her first feeding at 11:00a.m. and they will start her off on 2cc's every three hours.  The doctor told the nurse practitioner that their main goal for the next three weeks is to put as much weight on her as they can.  I can about guarantee this will be the only time you will hear a doctor say their patient needs to gain weight.  They have switched Harli's care around to match them up with her feedings so instead of changing her diaper every four hours it will be every three hours allowing Blair to get more practice:)

I was able to kangaroo Harli today, which really lifted the spirits.  Today was a lot different than the first time I got to hold her because she was much more active.  She still does not know what to think of the hair and today I think it was bothering her, she kept moving and pulling which was perfectly fine with me.  The session lasted about a hour and a half and if everything goes good through the night hopefully there will be another session tomorrow for one of us.

This afternoon Blair spiked another fever and we are not sure if it is from the mastitis or from the folliculits.  We were able to get her back to the room and get her on some medicine to help break the fever.  She is doing much better now, but still has a slight fever.  In the morning if Blair isn't feeling back to par then we will be making a trip to the emergency room to figure out if this is related to the mastitis or if she has picked something up.

Tonight was an earlier night at the module because they were bringing in another baby by helicopter.  I am not sure of the circumstances, but will be praying for the family.  This will be the second new arrival into our module today with only one baby leaving.  Blair and I were talking tonight and we are not sure if module three is a module for sicker babies, but our module is the only one that stays full most of the time.

To this point of our journey you can see what the power of prayer can do and Blair and I can't thank you enough.  Every day I remind myself God is good all the time, all the time God is good. 

The look says it all, I guarantee Harli is wondering what she just got laid onto.

Harli looking at Blair who is about to change her diaper.

January 23, 2012

Today started out a little slower since Blair and I over slept and did not get to Riley until a little later.  When we got their it was right before the doctor and nurse practitioner's made their rounds.  We talked to our night nurse and we did not get a very good report for the over night.  Our nurse told us that Harli had six episodes during the night that required stimulation (when the nurses actually have to reach in and wake Harli up so she starts breathing again).  This is more episodes than Harli has had in a twenty-four hour period since she got her hole in her intestine.  While the doctor and nurse practitioner were making their rounds, which by the way we have a new doctor for three weeks, they had decided to turn her vapotherm machine back down to three liters since four liters did not change the amount of episodes she was having. The doctor said that since the x-rays of her lungs showed they were expanding perfectly having the machine set at four liters would not make a difference.  They also decided that they would keep track of her episodes and if Harli has more than six episodes in a twenty-four hour period that require stimulation they would talk with the surgeon about putting her on the CY-PAP machine.  The CY-PAP machine will give Harli a little extra stimulation, which should help her remember to breath, but can not be done if her intestine has not healed.

Once the doctor and nurse practitioner had left our nurse got curious and started looking at the episodes that were reported by the night nurse on the monitor.  To much surprise there were none that were recorded by the monitor so our nurse isn't sure what was going on, but said that she was going to check into things.   There were a little change in plans on the Upper GI that was scheduled today because they found out in order to do a full Upper GI Harli would have to go downstairs to the operating room.  Since the doctor did not think that was a good idea they decided to give the dye through her feeding tube and let it start at her stomach and follow it from there. They took an x-ray of Harli's stomach at 12:00p.m. and since everything looked good they gave her the dye, they took another x-ray and then took x-ray's every four hours.  She has another x-ray at 12:00a.m. and if that x-ray looks good then her intestine has healed.  If the intestine has healed then they will start milk in the morning which will hopefully allow Harli to start putting on weight.  The results from the x-rays so far are very good and show no signs of problems. I doubt that either Blair or I get any sleep until we get a phone call with the results of the final x-ray.

During the day Harli had a total of four episodes, but only two of those episodes required stimulation.  That is a great improvement since yesterday, but Harli still has a long road ahead of her.  She spent most of her time today on her right side since that allows the intestines to work faster on a new born, which is something we learned today.  Her activity level was high all day today, but she did not pull out any of her tubes.  Harli's weight remained the same today as yesterday which isn't a big surprise.

Talked with Dave Kennedy's family and they had nothing but positive information. It sounds like there is a very good chance that they might be released this Friday, which is an answer to prayers.  I ask that you keep them in your prayers for their child to continue to heal and to give the parents relief that the surgery went well.

Harli was completely out this morning when we arrived.

Harli posing for the x-ray technician.

All sprawled out

January 22, 2012

When Blair and I arrived over in module three this morning we found out Harli didn't have a real good night.  The doctors were not sure if Harli is getting tired or if her blood count levels are low because last night and this morning her energy levels were down.  They ended up turning the vapotherm machine up to four liters, which it has been set on three liters since she was taken off the ventilator.  They are going to check her blood count in the morning to see if she needs another blood transfusion, or see if she is just tired from all the breathing and moving that she does.  Harli laid pretty still most of the morning which is something we have not seen in over a week when the doctors found out she had a whole in her intestine.

9:00a.m.-4:00p.m. Harli did not have one episode during this stretch of time, so it was very apparent that by turning up her vapotherm machine to four liters helped.  Around noon Harli started regaining much of her energy which was very comforting to watch.  Harli has now turned into a normally preemie, she loves her belly.  Every time today when the nurse tried putting her on her back she would through a huge fit and just quit breathing.  So now it is a constant battle from side to side and on her belly.  Even though occasionally they have to put her on her back to see how long she will tolerate that position to help keep her head uniformed.  Today I was able to witness Harli "attempted" to roll, which was very unsuccessful but interesting to watch. I will give her credit that she does try to get what she wants she just does not quit have the strength.

The nurse did the usual Sunday routine and that is to weigh and measure her length.  With much surprise she gained two ounces over night which puts her weight even to her birth weight.  The biggest surprise was when they measured her, she has grown two inches since last Sunday.  The nurse couldn't believe it and actually double check herself to make sure she had not made a mistake.  So now our little girl is 14"long and weighs 1lb 14ozs.

Tomorrow is a big day for the Culy family.  They are going to do Harli's Upper GI, where they give her the dye and take multiple x-rays throughout to make sure the dye is going through her system properly.  They have not set the time which this will take place, but I was told if they are able to do this procedure first thing in the morning we should have results tomorrow.  If the results are positive then they will start Harli on breast milk, but if the results are not positive then they will have to discuss surgery to fix the intestine.  If the Upper GI does not take place until later in the day then we probably won't know results until Tuesday morning.

I ask that you continue to pray for our family, and keep us in your thoughts tomorrow as this is another pivotal moment in Harli's growing process.  I also wanted to thank all the friends and family that have been able to come and visit or who have been in touch with Blair and I. It is amazing to see first hand the power of prayer and support.  Thanks to everyone

Sleeping peaceful most of the morning.

One of the poses I got after changing her diaper. Legs sticking straight out.

When Harli realized I was done changing her diaper her legs fell and she started falling asleep. 

January 21, 2012

Today was another busy morning at Riley.  It started out with Blair and I going to the emergency room because Blair has started getting little bumps on her stomach.  After spending almost three hours waiting on the doctor we found out Blair has folliculitis, and the doctors think she got it from her c-section.  The doctor and Harli's nurse practitioner said it was not uncommon for people to have infections from surgeries because of all the different things that are laid on their stomach.  We found out that Blair is still allowed to be around Harli because if Blair was contagious then Harli would already have the symptoms since she doesn't have an immune system.  We finally arrived at Harli's bedside around 11:00 a.m. and we got a very good report from her nurse for both the morning and the night.

There were not many changes with Harli today, other than the fact that she is not having as many episodes.  The episodes she is having are farther apart and she is starting to catch herself more times then the nurses are having to wake her up.  The nurses continue to say that Harli is improving every day and they are very glad to see the progress she has made this past week.  We are still waiting to have Harli's upper GI on Monday and still praying for good news.

This is a shorter post tonight as there was not big news in module three, which was relaxing.  I hope all of you are doing well and my family thanks you again for all the prayers and wishes.

Not very happy about having her diaper changed.

A little happier now that she has on a clean diaper.

All warm and cozy and taking a nap.

Our night nurse took the time to make sculptures of Harli's hands.  She had to do two sets because the first ones broke, but the second ones turned out absolutely amazing.  She is so precious and already has her mommy and daddy wrapped around her finger.

January 20, 2012

So today was a great day both with Blair and Harli.  Blair woke up feeling better but made the decision she would stay in the room for another day. So I ventured over to Riley by myself, when I entered Harli's room the vapotherm machine was still set the way it was the night before.  The night nurse gave me a good report, and Harli was still laying on her belly.  The nurses have decided that Harli is now like all other preemies meaning she will now sleep on her belly.  I was with Harli most of the morning and there weren't many changes.  The nurses informed me that the module was going to be shut down at 12:30p.m. for another surgery so I just sat back with Harli until I had to leave.

While the module was closed today from 12:30p.m. thru 5:30p.m. they worked with two of the babies.  The baby that had surgery yesterday was taken off the EKMO machine which is an answer to prayer.  The doctors gave his parents very good news, but I wasn't able to talk with the parents long enough to get more details. Please continue your prayers for the little baby and his family during his recovery.

I never saw Dave Kennedy's niece but I ask that everyone continue their prayers for her baby and for the family.  With the surgery their baby went through they will have a very long road ahead, but I know with the prayers and support their baby and family will make it through this difficult time.

Blair found out some great news today about her mastitis.  Since Blair is allergic to penicillin the antibiotic the doctors put her on were going to cause her to pump and dump her milk.  I had Blair text me the name of the antibiotic so I could show Harli's nurse practitioner who took the name of the antibiotic and went and talked with a pharmacist, who told her that Blair would not have to pump and dump the milk.  The nurse practitioner told Blair and I that they had to watch some of Harli's blood levels in order to feed her the milk but so far she would be alright to drink the milk.  We just have to put a mark on the label so they know which milk was pumped while on the antibiotic.

Tonight I got a really good picture of Harli when the nurse was changing her diaper and its amazing how much energy that girl has.  When the nurses reach in and start moving anything that girl starts squirming and doesn't stop until they get their hands out.  The doctors are still on schedule to do Harli's upper GI on Monday (when they give her the dye) and I am praying that we get good results from that.  Depending on what time of day the Upper GI is done and what the results are will depend if they can start Harli on breast milk Monday, Tuesday or at all.

Please continue your thoughts and prayers for our family!  Love you guys and thanks for the support thru this part of our journey.

AND NOW FOR THE BEST PART!

Harli is still weighing in at 1lb 12.5ozs.