Up to 2

Nicholas is doing well today.  He is now back up to 2 bottles a day.  His nurse gave him his first bottle around 2 pm today and I will give him his second tonight at 8.  He took about 15ml from his nurse.  That is pretty good considering it was less than 24 hours since his previous bottle.  His mommy gave him that one and he took 25ml from her.

I helped Nicholas' nurse give him a catheter this afternoon.  They have to use that to get a urine sample to make sure the antibiotics are fighting off the infection.  So far 1 of the bacteria that was found is gone but there is still 1 left.  Nicholas will be on his antibiotics for 10 days instead of 7 just to be safe. 

Nicholas will probably be moving over to the intermediate side in the next week or so.  He could be moved over there now but since he's had the infection and he is still having spells from time to time they wanted to wait and make sure he is ready because they don't want to have to put him back on the intensive care side once he goes to the intermediate side (which we've seen that happen before to other babies).

Positive 24 Hours

Nicholas has done well since being turned down to 1 liter.  They do go up to 2.5 liters and they go up on his oxygen when he gets his bottle but other than that he's on 1 liter and his oxygen is between 30-40%.  They just go up on his flow and oxygen so he's less likely to tire out and have a spell.  Some babies, even when they come home, only need oxygen for their feedings.

Last night Nicholas took 35 out of 40 ml from his bottle.  He took 30 ml the day before from the nurse so he's moving in the right direction.  He is still only getting the 1 bottle until he gets his stamina back.

Nicholas was also given a crib today.  This crib is white and not metallic like the previous 1. 

They also did an ultrasound to make sure everything was ok with his kidneys and that came back negative.  They will also run a test while he urinates before he comes home to make sure everything is ok in that department too.

Nicholas currently weighs 5lbs3oz.

1 Step Closer

At 11:30 am this morning Nicholas' flow was turned down to 1 liter.  He was having residuals after his feedings and Dr. Bridges thinks that with all of the oxygen going in it could be making it a little harder to digest his food.  So far Nicholas has done well on the 1 liter.  I posted the title 1 step closer because if he can stay on this (1 liter) he's that much closer to micro flow and he can come home on that. 

His nurse today didn't give him his morning bottle because he still doesn't have all of his strength back and he gets very tired after taking a bottle.  Mariah and I will be the only ones who will give Nicholas his bottle today. 

Nicholas currently weighs 5lbs5oz.  Here is a little bit of information that most of you probably are not aware of: Nicholas has now been alive and in the NICU for 80 days. 

Almost

Nicholas is almost back to where he was before he got the infection.  He took his first bottle since Saturday night today and he drank 30 ml.  His nurse said he was out of breath when he was finished but when it was time to feed him again she said he was looking around wondering where his bottle was.  She said he was even smacking a little, lol. 

They also ran another urine test to make sure the infection is gone but we won't know the results until tomorrow.  Until it is confirmed Nicholas will remain on the antibiotics.  He's only had 1 spell today and his nurse said it wasn't bad.  They turned his flow down last night to 2 liters and other than that 1 spell he's been fine.

This was the picture we were going to post on Christmas day but he wasn't feeling well and it didn't seem appropriate at the time to post it. 

Getting Better

Nicholas is almost back to where he was before the apneic spells started.  Dr. Harlan said they may turn down his flow tomorrow (he's currently at 2.5 liters) and his oxygen is down to about 30%.  Dr. Harlan also said they are going to run another test just to make sure the urinary tract infection is gone.  They are also going to up Nicholas' feedings as he is getting very feisty and he is still only getting half of his regular feedings.


Nicholas was measured last night and he has shot up to 17 1/2 inches!!!!  The last time he was measured he was about 15 1/2 inches.  In the very near future he won't be able to wear his preemie clothes any longer.  We will make sure that the preemie clothes he received for Christmas will be worn first. 

Great News

Nicholas is back on the nasal cannula.  Dr. Cox said Nicholas was moving around a lot and he decided to go ahead and try him on the nasal cannula. So far so good.  Nicholas has also received his first feeding since Saturday night at 11 pm.  He seemed to enjoy it too : - ).


Nicholas currently weighs 5lbs2oz.  He lost a few ounces because he wasn't allowed to eat.

Improving

Today it was confirmed that Nicholas does indeed have a urinary tract infection.  He's been on antibiotics for over 24 hours now and he has slowly been improving.  He's starting to get more and more active which means he's starting to feel better.  The plan is to put Nicholas back on SIPAP this afternoon because he's getting better and they're weaning his support on the ventilator.  In a day or two he should be back on the nasal cannula.  They will also give him some milk today (through the tube) but for now it will only be half of his normal feedings and tomorrow he will resume the full amount again.  Nicholas has also received a blood transfusion because they had to take his blood several times to check and make sure he's still recovering.  Once Nicholas settles back to where he was and a couple of days have passed they will resume giving him bottles.  He is still dealing with the infection but he is clearly feeling better. 

Of course this put a halt on our plans to finish the nursery as we have spent the majority of the past 2 days at the hospital.  At 1 point last night it got to where the doctor would walk by and check on both Nicholas and us, lol.  1 of the nurses asked us at about 9 pm if we wanted some coffee because she said we looked like we were about to fall out.  We ended up leaving last night around 1 am but we asked his nurse to call us as soon as the results came back from the 24 hour lab work (which was at 4 am).

A Christmas to Forget

Christmas is my favorite holiday.  It always has been and probably always will be.  It was especially fun as a child and waking up to see all of the presents Santa Claus had brought me the night before.  It is with this in mind that I begin to tell everyone what happened on Nicholas' first Christmas.

Mariah and I left the hospital on Christmas Eve about 10 or so to come home and go to sleep.  About 11 I decided that I didn't want Nicholas to be alone on Christmas because like I said I have always enjoyed it and I didn't want him to be alone on his first Christmas.  I went up to the NICU and his nurse asked me if I wanted to hold him and I of course said yes.  Well, Nicholas had an apneic spell.  The nurse stimulated him and I held him again and again he had another spell.  This time I told her I wasn't going to hold him if he's going to keep on doing that.  Then Nicholas started having spells while he was lying in his crib.  I mean he was having them 1 after the other with about 2-3 minutes in between.  They would stimulate him and his numbers would go back up and the fall right back down.  At 1 point there was a nurse holding him up and just waiting to stimulate him to prevent the spell from happening.  He was constantly having to have more oxygen too.  His face was very white and he had very little response to anything that was being done to him.

The nurse then called Dr. Harlan and it was then decided that Nicholas was going to be put back on SIPAP and that Dr. Harlan was going to come in.  They went ahead and started Nicholas on antibiotics in case he had an infection.  Dr. Harlan ran some tests and he said we wouldn't know if he had an infection until the noon test comes back.  Although there is still 1 test that hasn't came back to confirm it yet Dr. Cox seems to think that Nicholas has a urinary tract infection.  It should clear up in 24-48 hours if that is indeed what he has.  Nicholas did not last very long on SIPAP.  He had to be put back on the ventilator after having several spells this morning.  Nicholas also won't be fed until tomorrow at the earliest because he's on an iv and is being given the antibiotics.

This all started happening around 11:30 on Christmas Eve and at about 2am Mariah called (she was worried) and I told her as much as I knew.  She immediately came up there and we stayed at the hospital until 5:30 am this morning and went back around 12 today.  I'll post the latest as soon as we have something definitive. 

As of now they're saying Nicholas probably got the infection from his own skin.

Christmas Eve

Nicholas had a good night last night.  No spells were reported and he's also having a good morning too.  He is being put in his chair more and more every day and he seems to like it.  Nicholas only took 10ml of his bottle this morning for his nurse but that has been the norm as of late. 

The plan is to finish painting Nicholas' nursery today and have his crib assembled tomorrow.  I'll post a picture on http://www.ourlittlesaint.info/ as soon as his nursery is complete.  It should be posted on there by Monday night if everything goes according to plan.

A Little Tired

Nicholas is doing ok.  They went back up on his flow to 2.5 liters because he had a couple of spells and they didn't want him to tire out.  His nurse tonight said she thinks that when they tried him on the micro flow it took a lot out of him and he's still trying to recuperate from that.  He also had an eye exam yesterday and that usually takes a lot out of preemies.  Hopefully, they'll be able to wean his flow back down to 2 liters soon.

Nicholas currently weighs 5lbs2oz. 

An Update on Yesterday's Status

Nicholas is doing ok.  He has readjusted to being back on the 2 liters.  They actually had him on 2.5 liters for a little while but were able to wean him back down.  Nicholas isn't taking very much of his bottles lately but we know it's a slow process.  We've read and heard that it takes some babies 3 weeks or more and he's only been getting them for 1 week.


Nicholas currently weighs 5lbs!!!!!!  I believe he's trying to catch up with Santa Claus : - )

Nicholas Meets Santa Claus

History Repeats Itself

Unfortunately, Nicholas had to be put back on the 2 liters of oxygen again.  He was having several spells around 7 and he also had to be bagged.  It is still a positive sign that he was tried on the micro flow.

He also only took 15ml tonight during his feeding as he was probably tired from the spells.

2 More Big Events

The most important big event happened today.  Nicholas is being tried on micro flow oxygen.  He was on 2 liters of oxygen but that is used for babies with apnea and his spells haven't been apnea related.  Nicholas is currently getting 190 ml of oxygen.  This is a huge jump from where he has been for about the last week and a half.  To put this in perspective: babies can be sent home on this type of oxygen.  Keep in mind he may have to go back to 1 liter or more depending on how well he does in the next couple of days but he is moving in the right direction.

The second big event was more special to me when it happened because I was a part of it.  Nicholas took his entire bottle last night and I was the one who fed him!!!!  His feedings are up to 42ml and he took 47ml!!!!  Nicholas had previously taken the entire bottle only for the nurses until last night.  I hope he takes the entire bottle tonight for his mommy because she deserves to feel that kind of elation too.

A Special Request

This is out of the ordinary but it is extremely urgent.  Our preacher's niece is in critical condition and I am asking that everyone who reads this to please pray for her.  Michael has helped us tremendously in this difficult time and has given updates on Nicholas regularly during our church service.  It is with this in mind that we do the same for him and pray for her as he does for Nicholas. 


Her name is Hannah Harmon.  Please don't forget to ask God to help her.

Still Okay

Nicholas is still okay.  He is not having many spells but they are fluctuating on his oxygen needs.  Nicholas also received a bath this morning and his nurse said he did not like it at all.


Nicholas was measured last night and he is now 39 cm or almost 15 1/2" long.  He has grown almost half an inch in the past week.

Ups and Downs

Nicholas is having an okay day today.  He's had a couple more spells than he's been having but Dr. Harlan said that is typical to see ups and downs and it should decrease in the near future.  Nicholas also had an x-ray last night and his nurse said it looked about the same as the last one. 

Mariah put in her notice at work today that she will be quitting January 13.  Nicholas won't be able to go to day care until he's at least 1 year old and who else could take better care of him than his own mother?  Mariah will look for a part-time job to work on the weekends and I will take care of him while she's at work. 

Nicholas currently weighs 4lbs6oz. 

I will be posting the link to Mariah giving Nicholas his first bottle from either 1 of us tonight.  Sorry for the delay but it takes a really long time to upload.  Check back on http://www.ourlittlesaint.info/ around 7:30 pm and it should be there.

A Surprise

Tonight, Mariah and I were given a timetable when Nicholas will be coming home.  Dr. Harlan said Nicholas will be ready to come home around the time when he's 37-38 weeks gestation.  Basically, Nicholas will be coming home within the next 3-4 weeks!!!!!  They will know a more definite time in the next 7-10 days because the older he gets the more he will progress.  Dr. Harlan did say Nicholas will come home on a monitor (a big relief for us) and he's uncertain whether or not Nicholas will come home on oxygen.  That will of course depend on how well he does in the next few weeks.

Mariah and I are both excited and nervous about Nicholas coming home.  As is the case with preemies we will "room in" before we bring Nicholas home.  "Room in" means that we will stay at the hospital in a room and take care of Nicholas for a full day and night so we will be comfortable in bringing him home.  We may "room in" for 2 nights but that is yet to be determined. 

As I have posted on here before we won't allow visitors for the first few weeks that Nicholas is home.  We just don't want to take a chance of him getting sick and having to go right back to the hospital.  We also ask that when we allow visitors that no more than 2 at a time come.  Also, please do not bring children when you come.  Nicholas can't go to daycare because of other children and it would not make sense to put him in the very environment we are keeping him away from.

3 Big Events in 24 Hours

The first big event that happened was that both Nicholas' nanny and nana touched Nicholas for the first time.  They both only touched his head and we made sure they put their hand sanitizer on before touching him.  It is a big event because they are the first people to touch him besides the NICU staff, Mariah, or myself. 

The second big event is that Nicholas was tried on 1.5 liters of oxygen for the first time today.  His saturated oxygen was fluctuating so Dr. Harlan said to just put him back on 2 liters.  That is a good sign that they have tried him as it usually takes several attempts before it works.

The third and perhaps biggest event is that Mariah and I finally bought Nicholas' crib and dresser today.  We of course didn't want to leave him for a long period of time but we needed to go ahead and get his nursery ready because he will be coming home very soon.

Did you know that 95% of babies who grow up in homes with pets are less likely to get asthma or have allergies?????     

Last One

Today, Nicholas received his last immunization shot for a little while.  The next shot he will receive will be his RSV shot but that won't be until he's ready to leave the NICU. 

Nicholas has also had a good day today.  He hasn't had very many spells and he's also taking his morning bottle in full every day.  Last night he took 25 ml when I gave him his bottle.  Nicholas is definitely making progress with taking his bottle.  He is starting to form his mouth in an "o" shape around feeding time to let us know he wants his bottle and he even smacks a little : -)

Nicholas currently weighs 4lbs5oz.   

A Big Jump

Nicholas' feeding last night with Mariah went well.  Nicholas took 28 ml out of 37 ml total.  He went from 3 ml during the first feeding from Mariah to 28 ml in 2 days.  Mariah tried giving his bottle while he was sitting up on her lap and it worked much better.  Nicholas' nurse suggested that.

The only down side to Nicholas getting his bottle is that he gets a little more tired than he used to but that is to be expected.  His lungs still aren't 100% and he's taking a bottle earlier than most preemies do.  Nicholas had a couple of spells today but his nurse put him on his tummy and he did fine.  Dr. Cox didn't seem to think it was anything to be concerned about because they are asking Nicholas to do a lot.

Nicholas currently weighs 4lbs4oz. 

 

We Have to Learn Too

Last night I gave Nicholas his bottle and just as he did with Mariah, he didn't drink very much.  He did take 7ml but his bottle has 37ml in it.  It is an improvement from the 3ml he took yesterday and we know it will take some time since most preemies don't start getting a bottle until they're 34 weeks and he's still 33 weeks (development). 

Mariah and I also learned last night what can happen when you hold a baby incorrectly.  We both let Nicholas' head tilt forward too much and both times he stopped breathing.  He did not have to be bagged or anything like that but it definitely taught us a lesson.  His nurse said it is a general rule that our airway is about the size of our pinkie and that we have to make sure he stays straight so he can breathe properly.   

Nicholas received his first immunization shot today.  He cried for a few seconds but quickly stopped.  Nicholas will be getting shots tomorrow and Friday for more immunization.  Some of the shots include immunization against pneumonia and hepatitis.

On Monday, Mariah and I will be shown different techniques on how to feed Nicholas.  This is all very new to us and as Nicholas learns to take the bottle we have to learn how to give it to him as well. 

Nicholas' Feedings

Mariah gave Nicholas a bottle last night for the first time.  It went okay but Nicholas only drank 3 ml of milk.  The nurse said it could've been because he was tired from the bottle earlier that afternoon.  It also could've been the supplements they add to his 8 o'clock feeding (that has since been changed).  I will give him his bottle tonight and hopefully things will go a little better.  I was incorrect on the post about his time he's given on the bottle.  It's 15 minutes and not 20 minutes.

Nicholas has also been switched from 30 calorie to 27 calorie formula.  He will also be getting 37 ml instead of the 31.  The reasoning behind the change is because when Nicholas comes home he will probably be on 20 ml formula and they are slowly going to wean him down.  They also still want him to get enough calories so he doesn't lose weight. 

Nicholas is still 15" long and now weighs 4lbs3oz.

There is no way this picture wasn't going to get posted : - )

Another Huge Milestone

Last night Nicholas took his first bottle!!!!  His nurse gave him 10 ml and he didn't have any problems.  Nicholas' nurse today also gave him a bottle but this time he was given 20 ml.  Once again he didn't have any problems.  In fact, his nurse said he seemed a little upset that she took it away and he kept his mouth open hoping he could find it, lol.  He will be getting a bottle 1-2 times every day for about 20 minutes and the amount for now is 20 ml.  His total feedings are 31 ml.  His feeding tube has also been moved from his throat to his nose.   His feeding time has also been cut back from 1 hour to 45 minutes because they want him to get used to drinking his milk within 30 minutes because any time after that he will start burning calories.

Also, Mariah will be allowed to feed him his bottle tonight.  This will be the first time either 1 of us has ever fed Nicholas.  We will definitely post a picture Tuesday night.

We both asked Nicholas' nurse today what steps would Nicholas have to take before he came home.  She said his oxygen would of course need to come down to at least even flo oxygen and most babies, when they leave the NICU, don't need this at home.  That is to say if he needed oxygen at home that is what he'd use.  In the mean time there are 2 other amounts Nicholas has to be on before he gets to the even flo.  She also said once Nicholas starts taking the bottle about every other feeding we'll know the time for him to come home is getting very close.  FYI, the nasal cannula is the last step before he won't need any support.

Ask, and it will be given to you; seek, and you will find; knock, and it will be opened to you. For everyone who asks receives, and he who seeks finds, and to him who knocks it will be opened.   Matthew 7:7-8

A Call at 9am

Let me begin this blog by starting with our Saturday night visit with Nicholas.  While on SIPAP we are able to hold Nicholas as long as he is tolerating us holding him.  Meaning, if his stats stay high we can hold him for as long as we want to.  Well, on Saturday night Mariah and I held him from about 9pm-12am and I reluctantly put him back in his crib because we had church in the morning. 

When I got home I set the alarm for 8am with the intention of going to see Nicholas before church but like usual I didn't get up in time.  Then at about 9am I get a call and the caller i.d. said it was from the NICU.  Well, naturally I get nervous any time I see that number pop up.  I answered the phone and it was Nicholas' nurse on the other line.  She said we just put Nicholas on the nasal cannula and he's doing well and we were wanting to know if we can text a picture to you.  This is as close as I can get to the joy it brought me to see that picture: it was like being a child and waking up on Christmas morning and seeing everything you asked for.  I made the mistake of taking my phone in to church and I could barely pay attention because I kept looking at his picture and showing it to Mariah. 


Ask using my name, and you will receive, and you will have abundant joy.  John 16:24

Doing Well

Nicholas has been on SIPAP for 24 hours and with the exception of 2 spells he's doing very well.  He had the 2 spells last night but his nose piece can't be put on his face tight and any time he picks his head up there's a chance it won't be on his face properly.  His nose piece can't be put on tight because that can break down his skin and could cause him to bleed.  It also can't be too loose because it needs to have a good seal.  Dr. Harlan said Nicholas will be on SIPAP for today and tomorrow (Sunday) and if he continues to do well they'll consider trying him on another device Monday.  His nurse thinks he will go to a nasal cannula.

Dr. Harlan also said that if Nicholas were to have any lung related issues they would've already happened.  Dr. Harlan is just hoping that Nicholas doesn't have any moments of apnea (which would just take time to get over if he does).

Nicholas' oxygen is currently at 30%.  Yesterday, when I went in the afternoon, he was at 41%.  The fact that they're able to wean him down is a good sign.  His pressure will be what dictates how quickly he goes from SIPAP to the next step. 

Here is the order they go in to determine what settings to use:

1. They turn down his oxygen.
2. If his saturated oxygen stays around 92-95% for long periods of time they turn him down some more.
3. If his oxygen goes below 40% they start to turn down his pressure.  When that happens his oxygen need may go back up because he's getting less support but usually he adjusts and they wean the oxygen back down.
4. Every 12 hours, sometimes sooner sometimes later, they give him a blood gas.  That shows the doctor and nurse if he's at the correct settings for his current needs.
5. These steps are repeated and tweaked until it is determined what type of support and what machine he needs.

A Subtle Change

Nicholas was put back on SIPAP this morning at 9:30 am.  He was doing well and only had a couple of spells but when I went to go see him this afternoon he had 2 spells back to back and the respiratory therapist looked to make sure the nose piece was on his face properly.  The respiratory therapist, along with his nurse, noticed that the nose piece was a little too big for Nicholas' face and that it probably wasn't sealed all of the way.  They went and got a smaller piece and all of a sudden his saturated oxygen level shot up to 100 and stayed in the 90s for the rest of the time I was there.  Such a subtle change can make a big difference.

Some of you may already know this but when Nicholas is on SIPAP he has what looks like a mask on his face and when they change pieces or readjust the mask they of course have to take the entire thing off.  On these rare occasions we get to see his face without any contraptions covering it up.  Last week he looked just like Mariah as a baby but now it is not as apparent as it was before.  He still looks like her though. 

Nicholas currently weighs 3lbs11oz.  This weight is probably not accurate as they gave him a dose of Lasix to try and help any possible inflammation the ventilator tube may have caused in his throat.  FYI, Lasix makes you urinate frequently.

Nicholas is Like George Jefferson

There are 4 things of importance that happened today.

1. Nicholas had his second eye exam.  Dr. Stokes said everything is improving and Nicholas may develop an eye disease but if that does happen Nicholas will out grow it.
2. Nicholas, much like George Jefferson from the Jeffersons, is moving on up.  He was upgraded today from the incubator to an open crib because he is now able to maintain his own temperature.
3. As I was sitting there talking to Nicholas' nurse this afternoon she asked me if we'd been able to hold him and I said twice.  She then asked me to go over to the other side as she proceed to hand him to me so I could hold him.  I was able to hold Nicholas for 1 hour.  Mariah came as soon as she got off of work and was able to hold Nicholas for half an hour.
4. The most important news of all is that Nicholas' tube will be coming out tomorrow (Friday) barring any major set backs tonight.  They didn't take the tube out today because of they eye exam and sometimes babies get riled up while that's going on.  He will be placed on CPAP when the tube comes out.

Nicholas now weighs 3lbs14oz.

A Little Off Topic

This is a little off topic but it does pertain to Nicholas.  Dr. Lowery told Mariah yesterday that a baby died in the NICU on Tuesday.  The reason she died is because she got an infection.  I know a lot of yall are anxious to touch Nicholas but as you can see it is critical that he does not get an infection and the best way to do that is to limit the amount of people who put their hands in the incubator. 

A Little Different

Nicholas has had an okay day.  They had him on CPAP settings yeterday afternoon and up until this morning.  That's when he had a couple of spells of apnea and they decided to hook the ventilator settings back up so he wouldn't get tired out.  This afternoon they decided to mix things up and every 6 hours Nicholas will go from CPAP to conventional ventilator settings and vice versa.  The reason why they're doing it this way is so he will breathe on his own and then he can rest a little so he won't tire out so quickly.  The plan is to take the ventilator tube out tomorrow and keep him on CPAP because they are not sure if the tube is the reason for the spells of apnea.  They said breathing through that tube is like breathing through a straw.  Imagine how hard that would be to breathe if you had chronic lungs.

Trial Period

As of 3:30 pm today Nicholas was placed on CPAP settings.  The way his nurse described it was that Nicholas is not getting any assisted breaths unless the alarm goes off and then he will get a breath to help him.  When I say the alarm goes off all that means is that he has skipped a breath and not that he's stopped breathing all together.  So basically he's doing all of the beathing on his own minus the oxygen and pressure settings (which are pretty low-29% and 6).  The only catch is that they didn't take the tube out of his throat because this is a trial and they don't want to aggravate his throat by taking the tube in and out over and over.  They were not able to say how long it will be before they take the tube out if he does well. 

As posted before it will all depend on how well he does on this as to what the next step will be.  If Nicholas lasts a couple of days and tires out they will probably just let him rest for a few days and try again.  If the reason why he isn't able to stay on CPAP is lung related they will probably use some sort of steroid.  Just as it has been in the last 56 days we have to wait and see. 

The nurses and doctors have all said in the last couple of days his breathing sounds much better.  They can hear the air moving in and out using the stethescope.  Nicholas has also been very active the last few days and that is a good indication that he feels well.  I hope in the very near future to show you a picture of Nicholas without a tube in his throat from any ventilator.

Nicholas is Paying Attention and His New Stats

Nicholas now weighs 3lbs9oz and is still 15in. long.

A Couple of Days

Nicholas is doing well today.  His episodes are becoming less and less.  His nurse today said he had 4 episodes but 2 while she was doing his "cares" (taking his temperature, checking his blood pressure, and changing his diaper) and he usually gets riled up during that.  He didn't need any help bringing his stats back up.  During the other 2 episodes she had to give him a few manual breaths (press a button on 1 of the tubes) but he responded quickly.  Dr. Cox said it would be a couple of days before they tried Nicholas on the Nasal IMV again.  Nicholas currently weighs 3lbs4oz and will be measured again tonight.

An Update and What's to Come

Mariah and I met with Dr. Cox along with 1 of Nicholas' nurses from the past couple of nights to discuss Nicholas' current condition and what will happen going forward. 

1. Dr. Cox wanted to let us know that he felt the Decadron worked on Nicholas because they were able to try Nicholas off of the ventilator.  Dr. Cox also said he could tell the steroid worked because Nicholas hasn't had any Deacdron since Thursday and that was a small amount (as it was tapered over 6 days) and that Nicholas was still on low settings on the ventilator.
2. Nicholas will be tried on either the Nasal IMV or SIPAP in the next 24-48 hours.  Dr. Cox said he can't really say for certain but he thinks Nicholas had spells due to apnea.  He also stated apnea is common and the only thing that can cure that is time and that Nicholas is close to the point where that would rarely happen (about 34 weeks gestation).  Nicholas' x-rays look much better too.
3. If Nicholas is not able to stay on SIPAP or the Nasal IMV it will all depend on the reason why as to what their next step will be.  If it's apnea they will just give him a few days rest and try again.  If Nicholas needs more oxygen on the ventilator (that's what he'll go back to if it doesn't work on SIPAP or the Nasal IMV) then they will talk to us about possibly using a steroid.
4. The best news yet: Dr. Cox thinks, barring any setback such as an infection, there is no reason to think that Nicholas won't be completely off of the ventilator for good within the next 2 weeks and should be over in the intermediate area in about 3 weeks. 

Dr. Cox also stated that Nicholas is doing well considering how sick he was when he was born and given that he was so premature.  Dr. Cox said Nicholas is improving and continues to grow and there is a very good chance that he will be home, possibly with some oxygen but can't tell that for sure, by the middle or end of January (his due date was January 27). 

New Videos and Picture

There are 2 new videos and 1 new picture on http://www.ourlittlesaint.info/ .  Nicholas is doing well today.  They continue to lower his settings on the ventilator and are planning on trying him again on the Nasal IMV in the next day or 2.  Just to clarify the Nasal IMV was what Nicholas was tried on after he was taken off of SIPAP and right before he was put back on the ventilator.  Mariah and I will be meeting with Dr. Cox tonight so he can answer any questions we may have about Nicholas' current condition and what the plan is going forward.  I'll post his answers on here tonight.  Probably around 10:30 or so.

Not a Good End to the Week

Nicholas has been having several episodes last night and today.  While we were visiting Nicholas last night he had an episode, which was his 6th of the day, so they decided to put the tube back in his throat and turn the settings up on the conventional ventilator.  They asked us to step outside while they did this procedure.  Prior to us stepping outside we watched as they were trying to get Nicholas' heart rate back up (they call it having to bag him).  So we stood outside in the hall for about 15 minutes waiting and worrying.  I told Mariah this is what it felt like waiting outside of the delivery room before I could go in when Mariah was being prepped for delivery.

When I say episodes, I mean the majority of the time Nicholas stops breathing and his heart rate drops VERY low and they usually have to bag him.  He hasn't had as many today but when I visited him this morning he did have an episode.  The nurse thinks it was because he pulled his tube up a little and that's all it takes for him not to receive enough oxygen to help.  The space where the tube has to be is very small.  We used to watch just his saturated oxygen level but now we keep our eyes more focused on his heart rate.

It is with this in mind that we are asking for NO visitors until Nicholas is more stable.  Trust me when I say this: you don't want to see what happens when he has to be bagged.  We will let you know when it's okay to visit again.

A Little Optimism

Nicholas is doing okay today.  He had a couple of spells where he decided to hold his breath but Dr. Cox said that is not uncommon with babies.  Other than the 2 spells he's had a good day.  Nicholas' x-ray looks a lot better today according to his nurse.  She said it's not perfect of course but it has improved.  As a result, they're going to keep Nicholas on the same routine he's on now and hopefully he'll be able to try the SIPAP again.  Dr. Cox also stated that he does not consider Nicholas on the ventilator right now because his settings are much lower than they would be if he were on the ventilator.  Nicholas currently weighs 3lbs2oz.

A Typical NICU Week

Nicholas was doing well on the SIPAP until today.  On 2 seperate occasions Nicholas stopped breathing.  The nurse said he pulled himself back up after the 1st episode but on the 2nd he wasn't repsondent and they had to give him some manual breaths (they've given him manual breaths before even when he was on the ventilator).  I am a little disappointed in that I have to let everyone know that Nicholas is back on the conventional ventilator.  He does not have the tube in his lungs like he previously did but he still has the SIPAP mask on.  The reason why he's on the ventilator is because SIPAP is limited in its range with pressure and manual breaths.  His pressure was at 9 on SIPAP and now it's at 15.  His assisted breaths was at 10 on SIPAP but now it's at 20 on the conventional ventilator.  BTW, Nicholas now weighs 3lbs1oz.  He has lost a lot of fluid (which is very good b/c he was a little swollen).

I posted that title because this is very typical of the NICU.  They get him off of 1 ventilator, then another, and try him on a 3rd but it's too much for him to handle right now.  There is really no way to celebrate accomplishments because at any time something like this can happen.  It is a constant feeling of apprehension. I don't view it as a huge setback and I do know it could always be worse but it's like having something you really wanted slip right through your fingers. 

Not all of today was bad though.  Nicholas managed to mess up his mask and the nurse had to readjust it.  While she was readjusting his mask she allowed me to get a picture with Nicholas' mask off and no tubes in!!!!  Unfortunately, it's on my phone so I won't be able to show too many people now.  If you are wondering what he looks like he looks a lot like Mariah did as a child.  Here's a comparison of what Nicholas looked like at birth and pretty much what he looks like now. 

Pictures on the Website

Sorry for the lack of updated pictures but we prefer not to show Nicholas with the SIPAP on.  It covers most of his face and it also kind of distorts the way he looks.  We will post new pictures as soon as Nicholas moves on to the next breathing device.  For now here's a picture of a baby on SIPAP.  The only difference is that Nicholas has a strap on his chin to prevent him from opening his mouth too much because if he opens his mouth he won't receive the full benefit from the SIPAP.

Hanging In There

Nicholas is still hanging in there with the SIPAP.  Last night, while we were visiting, he gave us a little bit of a scare.  He was struggling for a little while and the NP asked the respiratory therapist to perform a couple of procedures hoping that would help Nicholas out and they did.  Today, Dr. Bridges consulted with a doctor in Columbia and the doctor in Columbia suggested they go ahead and start Nicholas on a respiratory steroid.  This will help Nicholas to breathe easier and with the hopes that he will be well enough to try either CPAP or the Nasal Cannula.  They are also switching Nicholas' headgear on the CIPAP from a head piece to a mask every 12 hours so they don't cause any aggitation to his nose but they may decide to stick with 1 or the other depending on how well he does on each.

What a Sweet Sound

This afternoon both Mariah and I FINALLY heard our son cry for the very first time.  The nurse yesterday said his voice is probably a little hoarse from the tube being in his throat and it is a little but it sounds so good to hear.  Nicholas cries in spurts and there is no need for a clock in the NICU because at 5pm he was moving around and crying like he was going to explode if he didn't get his milk, lol.  His stats were dropping when he was crying and that was after about 5 minutes of crying too but like the nurse said he doesn't have enough reserve to cry without his stats dropping.....yet.  I have noticed that his stats are staying higher for longer while he's crieing.  After the nurse reswaddled him and put him on his tummy his numbers shot right back up.  Dr. Cox also said that his settings are the same on the SIPAP as they were on the conventional ventilator which is great.  The joy in knowing that Nicholas is 1 step closer to coming home is overwhelming.

New Stats

Nicholas now weighs 3lbs6oz and is 15in. long.  He was up to 3lbs8oz but the last 2 times he's been weighed he's weighed 3lbs6oz.  He did have a little bit of residual and he was swollen a little (they attribute that to fluid).

7 Weeks Old

Where do I begin with this blog.  Well, Nicholas has been on Decadron since Saturday afternoon and we haven't seen the drastic improvement we were looking for.........until today.  Nicholas was tried on the conventional ventilator this morning at around 8:30 and has been doing great ever since.  His blood gases look good every time and every time his blood gas looks good they wean him down.  His nurse said they've been weaning him down on his support all day.  When I went at 4 his oxygen was set at 40%, his pressure was at 6, and the biggest thing is that his assisted breaths was at 15!!!!  That means every minute the machine gives him 15 assisted breaths along with what he's already doing.  That is great considering the Oscillator was doing almost all of the breathing for him. 

Now for the best news of all.  Barring a setback tonight (which Dr. Cox does not seem to think will happen) Nicholas will be tried off of the ventilator for the 1st time tomorrow!!!!!!  That does not mean he will be breathing all on his own but that he will go to what is called SIPAP.  That means he will do the vast majority of the breathing on his own but they will probably set it to where he will have some assisted breaths every minute.  He has to do well on the SIPAP for several days before we can get too excited about the ventilator being gone.  I'm just ecstatic that he's to the point where they are going to try him off of the ventilator. 

The only bad part about all of this is that we still won't be able to see his entire face.  I saw the SIPAP on a baby in the NICU and it covers most of their face with what looks like goggles, a tube, and a brace to keep their mouth closed.  This is just minor though.  We will all get to see his face without any contraptions in no time.


Nicholas with his new clothes on 11/27/11. 

Update

Nicholas is doing well today.  They've been able to wean down his oxygen 8%.  The nurse said it would take some time to get the steroids to fully working in his body and they're in no hurry to wean him down because they want to make sure they know if he has just inflammation or scarring too. 

On the website you will see a picture taken this afternoon (Sunday) and a link to Nicholas having his first set of clothes being put on him (that is an airplane on his shirt).  As you can see, he was not very happy that he was taken off of his tummy and put on his back.  After a few minutes though he settled back down.  The picture below shows you what it took to get him calmed down (him holding my finger and rubbing his back). 

Nicholas' First Pair of Clothes

Recently while in the NICU Nicholas' neighbor to the east has been wearing some clothes and after thinking about it for a while we decided to buy Nicholas some too.  We went shopping at the mall and to neither 1 of our surprise most of the stores had nothing.  Before tonight I'd only seen 1 store that had anything but then again I'd never looked for preemie clothes before.  Well, we tried 1 last store at the mall and wouldn't you know that they had a couple of different types of clothes to choose from.  Although the choices were somewhat limited we decided on the 1 that would be the easiest to access while in the NICU.  Nicholas was not too happy when the clothes were being put on him as he is easily riled up but after a few minutes he settled back down.  We will post the video link of Nicholas having his onesie being put on him on the website Sunday.


PS we'd already ordered some clothes for Nicholas before we went shopping tonight and you should start to see them in his pictures in the coming week.

Recap and Current Update 11/26/11

Nicholas was born on 10/10/11 at 11:38 am.  Mariah has been told 2 reasons as to why he was born premature and neither 1 can be confirmed as the sole reason.  1. She has an incompetent cervix.  2. Her womb was infected.  Nicholas was born with inflammation in his lungs.  The inflammation, along with the immaturity of his lungs, is why he needs support breathing on the ventilators.  Nicholas has had the Jet ventilator 2 times and he's been tried on the conventional ventilator 2 times.  He's currently on the Oscillator (similar to the Jet).  After 28 days of needing support on the ventilator Nicholas was diagnosed with CLD or chronic lung disease.  After having his first brain ultrasound Nicholas was also diagnosed with a level 2 brain bleed.  His most recent ultrasounds have indicated that there is no new fluid and the blood is being reasborbed back into his body.  BTW, grade 1 and 2 brain bleeds are nothing to be concerned about. 
Nicholas has also been given Hyrdocortisone 3 times.  The 1st time was to try and prevent the CLD.  Hydrocortisone is the most mild and safest steroid that can be given to preemies.  His last dose of Hyrdocortisone was almost 2 weeks ago and he has been stable for the majority of that time.  However, in the last few days his oxygen and pressure needs have gone up.  His x-rays have also started to look a little worse.  Keeping all this in mind Dr. Harlan, Dr. Cox, and a doctor at MUSC that was consulted by both doctors in Florence all agree that at this point in time the best thing to do for Nicholas is to start administering Decadron.  They all feel that he is kind of stuck where he's currently at and will need a pretty big boost to get him off of the ventilator for good.  Dr. Harlan also said that since he's past 30 weeks gestation (currently at 31 weeks) and since he's bigger it is much more safe to use Decadron now than it would have been earlier in his life.  Over the next 6 days Nicholas will be given Decadron with it being tapered every 2 days.  Either on Sunday or Monday they will try Nicholas on the conventional ventilator to see how much he has responded to the Decadron.  His response to the Decardon will also determine whether or not Nicholas' lungs just have inflammation or scarring.  The x-rays do not show that and this will help to determine what their next steps will be.  If Nicholas only has inflammation then he should be completely off of the ventilator but if there is scarring it will take several weeks to get him off.  They would also give him different types of steroids and they would also be given differently too.  The first 24-48 hours should be a good indicator as to how well the Decadron is working.

NICU visits

Sometimes in the NICU you get a little down.  For example, when you arrive and they tell you Nicholas is needing a little more support today.  That typically causes us to worry as it would most people.  Then again on some visits you get news like we've been able to wean down Nicholas' support today.  Of course that gives us renewed optimism.  They said in the beginning it would be like a roller coaster ride and that is very true.  We were kind of down today about the possibility of Nicholas having to take the Decadron but then we visit tonight and talk with his nurse and she completely changed our thinking.  She just kept saying he's going to be home very soon and he's right around the time when babies just "click" and everything starts coming together.  It's little things like this that keep giving us hope that everything will be ok and the surprising thing is that it's usually from 1 of the people we'd least expect it from.

Tough Decision

Tomorrow, Nicholas will probably be given his first dose of Decadron (dexamethasone).  Dr. Harlan and Dr. Cox will come to a conclusion as to what steroid and what method to use for Nicholas but more than likely it will be Decardon.  Unfortunately, Nicholas is still on the ventilator and Monday he will be 7 weeks old.  Dr. Cox and the other doctors have told us that studies show it's not good to have a person on a ventilator for long periods of time.  Decadron is the steroid we didn't want Nicholas to have to take because it can slow down his brain growth but sometimes in life we only have 1 option.  His brain and other organs, if they are slowed down at all, will catch up in time.  Decadron is 10 times as powerful as the Hydrocortisone he's already been given and its sole purpose is to get babies off of ventilators.  Dr. Cox also stated that Nicholas is big enough now that if he were to get off of the ventilator he would be able to breathe on his own.  The reason why they're considering Decadron or any type of steroid is that Nicholas' oxygen needs have gone up in the last couple of days.  Up until recently he was slowly being weaned down on his support but like before his needs have increased.

Like the title says this was a very tough decision to make but there aren't any other logical options at this time.  I just pray God does not allow any further damage to my son.