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.