At Last Some GREAT News

We have GREAT news to tell everyone: Nicholas' blood vessels have fully developed!!!!  What this means is that Nicholas is no longer at risk of going blind from ROP!!!!!  Today was his last visit for his ROP at MUSC and Dr. Teed said everything was still looking good and that since Nicholas is 53 weeks (as of today) he is no longer at risk with ROP.  As a reminder, ROP is Retinopathy of Prematurity.  Nicholas will have to be re-checked in 6 months at either Stokes here in Florence or at MUSC because he is at risk for being near sited but that is no big deal as both Mariah and I are near sited. 

Below are some pictures of the visit.  It should be noted that the pictures with Dr. Teed are not the actual exam.  The exam takes place with the lights off.  This was done so you could see what he does during the exam.  I wanted to get pictures last time but the battery died just as soon as I went to take the first picture.  Also, there is a picture of Nicholas getting his first bottle of Apple-Prune juice.  He loves it!!!!

Hello Kitty decorations on the exam room wall.

Waiting on the doc watching the Backyardigans.

What's the point of an appointment if you can't keep it???

OMG!!!!  Please be the last time!!!!

How much longer???!!!

I sure am glad I don't have to go through this again!!!!

It's not Campbell's but it's mmm mmm good.

A Busy Week

Last Wednesday morning Nicholas' Nanna, my mother, passed away.  She was 62 years old.  She was buried on Friday April 20.  She loved Nicholas very much and she is the only person who has ever commented on this website.  I hate the fact that she's gone mainly because Nicholas won't remember her but also because he won't know how much his Nanna loved him.  She will be missed by us all but I know without a doubt that she would want us to continue to post updates about Nicholas.  Hopefully, someone will show his PaPa how to use a pc so he can see them too : - ).


Nicholas had an audiologist appointment on Tuesday (4/24/12).  We had to take him to Sumter because he failed 1 hearing test in the NICU and another shortly after he came home.  We are very happy to report that Nicholas only has minor hearing loss and the audiologist seems to think something is blocking his hearing.  We are all hoping that it can be corrected and that he will have 100% hearing (or close to it) in the very near future.

Today, Nicholas saw his pediatrician.  The audiologist said the pediatrician could either treat Nicholas or refer him to an Ear, Nose, and Throat doctor.  His pediatrician said that because Nicholas still needs the help of oxygen that he can't really do anything right now.  He said the cons outweigh the pros but he will re-evaluate after Nicholas' next pulmonologist visit.  Nicholas can now have apple-prune juice (up to 2oz with water added) or dark Karo syrup.  This was ok'd because of Nicholas constipation and hard stools.

Nicholas now weighs 13lbs7oz, is 24 5/8 in. long, and has a head circumference of 17 1/2 in.

We will also be going back to MUSC to see Dr. Teed again so he can check on Nicholas' eyes. 

You're not my PaPa!!!  He wears glasses.  I don't know who you are mister!!!

Nicholas prepares himself for the big test.

PaPa and the audiologist in deep thought.

Electrodes behind the ears and on the forehead.  There's also a piece in his ear.

ZZZZZZZ

3 Times

The first time Nicholas was held by his Nanna.

The second time Becky held Nicholas.

The last time.

More Pictures and a Short Video

That crib sure looks comfy.

It sure has been a long day.

Anybody can sit up......duh.

You mean I have to exercise EVERY day???!!!!

Click the link below for the video.

http://youtu.be/TSnEnlKf9gI

Visitors

As you will see from the pictures below people other than grandparents can now come over.  Please call if you would like to come over and give us a couple days notice. 

Here are some pictures from their visits as well as 1 of just Nicholas.  I should also apologize for not getting a picture of Susan holding Nicholas.  I didn't even think about it until after they had already left.  I'll make certain to get it next time.

How did you get hair on your face?????

I must be handsome to have all these ladies wanting to hold me.

Maybe this nice man will take me outside.

Yeah!!!!  Visitors sound great!!!!  (more people to hold me)

Nicholas and Alley Hang Out

 

This was taken several weeks ago but I just got around to posting it.  As you can see, the cats don't bother Nicholas and he doesn't bother them.  

Some Pictures

Am I shrinking or are my chairs getting bigger???

It makes sense once you see the picture.

I know what you're thinking and the answer is no it's not a real dog.

Chillin

Daddy are you wearing mommy's shorts?????

Don't lie to me......are you SURE you've got me???!!!! (his physical therapist)

6 Months Old

So we have a little bit of bad news.  It's not really bad but it's just a little disappointing.  Nicholas went to the pulmonologist today and unfortunately he decided to go up on Nicholas' oxygen to 1/4 of a liter.  He was on 1/8 of a liter so it's not a big jump at all.  The doctor also said this is not uncommon and he ordered an ultrasound of Nicholas' heart to make sure he didn't have another condition.  Even if he does the doctor would just change the prescriptions of the drugs he's currently taking.  In 2 weeks we are supposed to turn his oxygen back down to 1/8 because the doctor still wants to wean him down.

Nicholas currently weighs 13lbs4oz.


Now for the good news.  Yesterday, when we went to Charleston, we had a little time to spare so we stopped by and saw my sister Jennifer and her son Jace.  This was the first time Nicholas, Mariah, and myself had ever met Jace.  He was pretty quiet and compared to Nicholas he was very light (although they're aren't that far apart in weight).  Here are the pictures we took during our visit.

I thought you said "ant" not "aunt."

Quit smiling and get me my bottle.

Jace: "I don't like the looks of that."  Nicholas: "ooooooooooo"

Nicholas: "What are those holes in the couch for?"  Jace: "Is that my other cousin in that picture???"

Whew!!!  I am so thankful I got my looks from the correct twin.

Luke 11:33-36

"Your eye is the lamp of your body.  When your eyes are good, your whole body is full of light.  But when they are bad, your body also is full of darkness."


That was part of my daily Bible reading last Thursday.  By the time I read that scripture I'd already known Nicholas was going to have to go back to MUSC to be re-evaluated by Dr. Teed.  Before I begin to tell you what happened please keep in mind that this will have no detailed or scientific descriptions of what Dr. Teed told us as we were a little surprised by the news.

We arrived at MUSC around 9:15 am and went over to the Storm Eye Institute and let them know we had arrived.  We had to give Nicholas his bottle in the lobby as he eats at 10 and we thought he would be back with the doctor then.  At about 10:45 we were back in the room waiting when a nurse came in to numb Nicholas' eyes for the exam.  From then until 11:15 am we waited.

When Dr. Teed walked in he started to say something about 2 instances and I said we have already heard.  To clarify what I meant was that I saw on the news this week that there had been an instance where Avastan (what Nicholas had injected the first time in his eyes) was found to be inactive at certain facilities in the US and this was the second time this had happened this year.  Dr. Teed was going to tell us that he'd had to inject 2 other babies again with the Avastan.  After he told us this we still went ahead and asked him about the inactive Avastan and he said those cases were found to be in cancer patients (that is the drugs primary use and it fairly new in babies).

So, after the chit chat was over Dr. Teed took a look at Nicholas.  He said part of Nicholas' eyes were engorged but that the other part was a good ways away from needing to perform any kind of procedure.  Meaning, both places would've had to have been bad for another injection or laser treatment to be done.  He said the laser treatment was probably going to be the choice (if necessary) because once you get to a certain point with the Avastan and it doesn't work another dose of it could make the ROP worse than its current condition.  We also asked if Nicholas would be in the clear after he reaches the 54 week mark (he's currently 50 weeks) and Dr. Teed said if not then it would be soon after.  To clarify the 54 week mark is usually the point where ROP is no longer a threat.  Dr. Teed concluded the exam by telling us that he's planning on coming to Florence on the 20th to see some other patients and he would like to check on Nicholas to make sure everything is still ok.

To summarize, Nicholas currently does not need any procedure done and Dr. Teed will re-examine Nicholas on the 20th.  Sorry there are no pictures.  I wanted to take a picture of Dr. Teed examining Nicholas but as soon as I went to take the first picture the battery died.  Oh well.  We got the news we were hoping for and we can't ask for any more than that.

Here Comes Peter Cottontail

Nicholas got a visit from the Easter Bunny today.  He got several presents including a onesie that says "diaper loading, please wait," "daddy's rock star," and a onesie that has a guitar on it.  He also received several toys and a couple of bunnies.

Here are some pictures of Nicholas with his basket and gifts.

A bunny brought this???  That doesn't sound right.

I'm a little skeptical but I do like what I see.

My room must be bigger than I remember to hold all of this.

That duck looks familiar.

A Visit from Nanny

Nicholas' Nanny came by on Saturday afternoon.  Although Nicholas wasn't able to roll over for her he tried his hardest.  Here is a picture from her visit.

An hour of work wore me out.

A Reminder

On www.ourlittlesaint.info in the background is the first page of Nicholas' discharge papers from the NICU.  I put that on there to help all of you remember his stats and also to remember how he has progressed since birth.  I know it is a little hard for yall to remember all of those stats but for Mariah and I it is like knowing our phone number or our social security number.  We take it for granted that we know all of that and we need to be reminded that yall do not.  Maybe you will see something on there you didn't already know. 


Note that it says he was in the NICU for 122 days.  They count the first day he was there as we do not.  Meaning, from the moment he was admitted that was 1 day (according to the NICU).  It should also be noted that this was his re-admittance back to the NICU because Nicholas was at MUSC for 5 days.  That is where January 10 comes from.

A Visit From Nanna and PaPa

Nanna and PaPa came to visit today (4/6/12).  After about 20 minutes or trying and resting Nicholas rolled over for them.  They are the first, besides Mariah and myself, to see Nicholas roll over in person.  The first 2 pictures are from their visit and the next 2 are shortly afterwards.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

A cat nap with Nanna.

Talking about the Yankees with PaPa

What do you mean they left????

All this took was for me to tell Nicholas I'd leave him alone if he smiled.

The 10 pm Routine

Every night I give Nicholas his 10 pm bottle (unless we switch times and that is pretty rare) and every night Mariah rocks Nicholas to sleep.  Here are some pictures taken tonight (4/4/12) of Mariah rocking Nicholas.

Going to see Mrs. Nappy

Why Does This Rocking Make Me Sleepy??!!

Must.....Fight.....Sleep!!!

Road Trip

We are going to see Dr. Teed Monday morning at 9:45 am.  This will just be to confirm Dr. Stokes' diagnosis.  If Nicholas has to have anything done it will NOT be done on Monday.

Not Good

Today, we found out that Nicholas will have to go back to MUSC.  It is not certain whether or not he will have a procedure done but he has to see Dr. Teed before that is determined.  The opthomologist here said he thinks it would be in Nicholas' best interest if Dr. Teed were to look at Nicholas and determine whether or not his condition is to the point that something has to be done.  We also do not know yet when we will be going.  Hopefully, we will know tomorrow.

A Look at Nicholas' Change in Appearance

1st Week of Life

1 Month Old

2 Months Old

3 Months Old

3 1/2 Months Old

4 Months Old

Almost 6 Months Old (4/1/12)