The Deep End

A First

Nicholas has taken all of his bottles for the last several days but today there was a first: he spit up.  His nurse said it was okay because he hardly ever burps when we try to burp him and this time he just happened to spit up when he did burp.  She did not seem worried and she guessed he spit up about 10 ml. 

Nicholas has only had 1 spell today.  His nurse attributed his bad spell yesterday to the versed he was given for the MRI.  She said Nicholas was probably very relaxed by the versed and that could've been why he wasn't able to bring his sat back up.

Nicholas' oxygen is currently at 75 ml and is turned up to 175 or 200 for his feedings so he won't tire out.

A Little Relief

Nicholas had his brain MRI today and we are very happy to report that nothing is structurally wrong with his brain.  All this indicates is that there is nothing major wrong with his brain.  He could still have learning problems down the road but they won't be able to detect that for a while (years). 

Nicholas is also taking all of his bottles very consistently too.  It took all 30 minutes this afternoon for him to take his bottle but that could've been due to the MRI and him not getting as much rest as usual.  He has also been having desats that we were not aware of.  A couple of them required stimulation or more to get him to respond.  Nicholas can't come home until those types of desats stop.  It could be that the cafcit is wearing off but they can't be certain yet. 

Up to 4

Nicholas did well with his bottle last night, this morning, and this afternoon.  He took all 85 ml in his bottle this morning and last night and a little over 70 ml this afternoon.  He will be getting 4 bottles starting today.  His schedule will be at 4 and 8 am and pm. 

4 for 4

Nicholas has taken at least 72 ml or more in each of his last 4 bottles!!!  He took 85 ml from the first 3 and 72 ml from his last 1 at 4 this afternoon (the minimum he has to take is 70 ml).  If he takes 70 or more tonight from his 12 o'clock bottle then he will start getting 4 bottles tomorrow.  Dr. Harlan said Nicholas could be home as soon as 10 days but we think that is a little too optimistic.  We think it will probably be more like 2 weeks just because he still has to be taking 6 bottles and of course they will be back to back and that will require a lot out of Nicholas. 

Nicholas will also be getting his RSV shot next week on either Monday or Tuesday.  He will probably get circumcised next week as well.  

Due Date

Nicholas is having another up and down day on his bottles.  The past 2 days he's taken 33 and 34 ml from his 8 am bottle and 85 ml both days from his 4 pm bottle.  Both mornings he was upset that he was woken for his bottle but in the afternoons he was wide awake and eager to eat.  Both of his nurses today said that maybe 4 pm is "his time" of the day and that's why he does so well during that time.


His feedings have been changed once again.  Nicholas will be getting 85 ml and instead of being fed at 8, 4, and 8 he will be getting fed every other feeding (8, 4, and 12).  The plan is to go straight to just bottle feeds after this transition.  If he takes 70 ml from his bottle during each feeding he won't have to get any from the tube.  We are assuming that the ot will work with Nicholas during his 4 o'clock feeding because she will be there from 3:30-12 and that would be the only time he gets a bottle during that time.

Nicholas currently weighs 8lbs2oz



FYI, this was the day Nicholas was originally supposed to be born (1/27/12).

A Very Good Sign

Nicholas took 60 ml last night and the occupational therapist was there to show us some stretches we can do to help Nicholas.  She also helped stretch the nipple of the bottle when it was clogged and made suggestions as to when to change the way he was sitting/lying. 

Nicholas took 33 ml this morning from his bottle.  He wasn't very awake and that was probably the main reason why he didn't take very much.  His nurse also said he could've gotten too comfortable in his mommy's arms. 

Nicholas took 85 ml from his bottle this afternoon!!!!  The most impressive thing is that his oxygen wasn't turned up prior to him getting his bottle.  I was aware that no one had turned it up but I just wanted to see if he really needed that extra support and he did not.  One of his previous nurses said that when you go down or up an additional 25 or 50 ml it doesn't make a huge difference and that is the main reason why I wanted to see what would happen.  He had no desats and didn't really get tired until the very end  (30 minutes).

Nicholas' feedings were changed from 80 to 90 ml but his doctor today wrote it for 90 ml.  Nicholas' nurse thinks he wasn't aware of why they made the change and it should be corrected.  Dr. Harlan also said it is very possible that in the next few days they increase Nicholas' bottles to 4.  Once he is consistently getting 4 a day then they go straight up to 6.  His amount given through the tube will also vary once they establish how much he can take with each bottle.  For example, if Nicholas consistantly takes 60 ml then that will be his minimum not to get anything form the tube but if he takes 40 then he would get 20 from the tube.

An Okay Day

Nicholas is having an okay day.  His schedule got a little mixed up this morning because his nurse didn't have his bottle ready and Mariah had to leave to go to work and she was only able to give him 20 ml.  When they changed nurses his new nurse gave him another bottle at 12 and he took 50 ml.  She wanted to make sure he got his 3 bottles and he has been getting them at 4 but since the ot is working with Nicholas tonight she decided to hold off until 8. 

His feedings have changed a little too.  They have changed Nicholas' feedings back to the higher calories and lowered the amount so he won't have to take as much.  This should also help to speed up him coming home as he should be able to take more bottles since he's not having to drink as much.

Nicholas did have 1 spell this afternoon but the nurse seems to think it was caused by reflux. 

Starting to Click

Nicholas took 85 ml from his bottle this morning and 75 ml from his bottle this afternoon.  They have also decided to give Nicholas 3 bottles starting today.  They won't be continuously feeding Nicholas every hour from 12-6am like they have been either.  Instead, he will be given his 95 ml with the tube at 12 and 4 so he will be hungry at 8 (his bottle time) and he'll still be able to rest.  They also went down on the calories of his milk from 25 to 20. 


Nicholas currently weighs 7lbs15oz and is 19 1/2 in. long.  Expect his weight to go down a little in the next couple of days as he won't be getting quite as much and there will be less calories too.

Day 105

Nicholas is having a good day today.  He took 60 ml from his afternoon bottle yesterday and 40 ml from his bottle last night.  This morning he took 30 ml but that was probably because he's continually getting fed throughout the night so he probably wasn't very hungry.  His oxygen was weaned down to 150 and he has done very well so far. 

COMPLETE!!!!!

Sunday Afternoon

Nicholas took 60 ml from his bottle this afternoon.  He may have taken more but we have to get the nipple just right and it can come out too fast or too slow and it wasn't stretched enough.  When we got there he was wide awake and fussing as he knows when it's time to eat, lol.  Starting tomorrow (Monday) the ot will begin working with Nicholas every night at 8.  Hopefully, Nicholas will be consistently taking a large amount every time in the very near future. 

Two bottles in one day

After the occupational therapist's session with Nicholas yesterday, she recomended that Nicholas be given 2 bottles daily.  Today Dr. Cox oked her recommendation, therefore Nicholas was given a bottle at 12pm and 8pm today.  His mommy feed him both times and he took 70 ml at 12 and 35 ml at 8.  His microflow is currently set at 150 ml and he weighs 7 lbs 11 oz.  Nicholas now has a favorite new hobby - swinging!

Impressive

Nicholas is having another good day.  His nurse was able to turn his micro flow down to 150 at 1 point but turned it back up to 175 before his eye exam.  Dr. Teed said his eyes were progressing very well.  The o.t. gave Nicholas his bottle this afternoon and he took 47 ml in 15 minutes.  She said she thinks he would've taken about 75 ml in the allotted 20 minutes if he was awake and more alert (he was sound asleep when she first got there).  Today was also her time to assess Nicholas and she is going to recommend that starting Saturday he starts receiving 2 bottles for 20 minutes each time.  The o.t. also said his reflexes are good and his head turn is also good.  Nicholas is definitely heading in the right direction.

Conference

Mariah and I met with Dr. Bridges and several people who work in the NICU today.  Here is what was discussed.

1. Nicholas' eye exam went very well today.  Dr. Stokes will be back in 2 weeks to check on Nicholas again.  Dr. Teed, the opthamologist who performed the procedure, will be in Florence tomorrow and will exam Nicholas.  This was Dr. Stokes' idea and it is just to confirm what he has seen himself.
2. Nicholas is still on micro flow and is between 150 and 200 ml depending on his needs at the time.  Even with his eye exam today he's only had 1 spell and they didn't have to turn him up higher than 200 ml.
3. The OT will be working with Nicholas again starting tomorrow.  During that time she will observe and decide how many bottles Nicholas will be getting from then on.  She also said that every week day an OT will be working with Nicholas so they can get him taking bottles regularly asap.
4. This is just speculation and Dr. Bridges said don't hold him to this but he said Nicholas could be home anywhere between 2-4 weeks.  Nicholas may come home on oxygen but that will all be decided between now and when he's only on bottles.

This is all very good news.  The OT said starting Monday (1/23) she will be there from 3:30-11 and that she will work with us every week night at 8.  Please do not ask to come during this time. 

Nicholas has been in the hospital for 101 days and we have been at McLeod or MUSC every day since Oct. 8.  It seems almost too good to be true that it's almost over.

He's Almost There

Nicholas was put on micro flow this morning and is doing very well.  Micro flow is 1/4 of a liter and Nicholas is on 200 ml.  They also turn his support up during his bottle but they have always done that.  We'll know by tomorrow if he was ready for micro flow or not because the first 24 hours are usually when the spells would occur if he needed more support. 

The only thing that is left now (if he stays on micro flow) is his bottles.  He took 32 ml this afternoon and that is very good but he has to be taking his entire bottle and that is 90 ml (3oz).  He will have to work up to that amount and he'll also have to get quicker because he needs to be taking his bottle in 30 minutes.  Anything after 30 minutes and he'll start to burn calories.

Even though it sounds like a long ways off with his bottles it's really not.  As long as he improves on his oxygen needs then the OT can work with him and he will learn how to take more milk more efficiently. 

Mariah and I will have a conference tomorrow with the doctor and nurses and we will have a better time table of when Nicholas will be coming home.  It should be within the next few weeks.

Still Doing Well

Nicholas is having another good day.  He is only having desats when he is having reflux.  Nicholas is still at 1 liter and at 30% oxygen.  He took 20 ml from his bottle this afternoon.


Nicholas now weighs 7lbs. and is a little over 18" long.

Remaining High

Nicholas has been getting bottles for a very short time the past 3 days and he's been gradually increasing his intake.  His saturated oxygen level is remaining high and that is also very important as that will dictate when they can wean him down again.  The first 2 days he was given a bottle for 10 minutes and he took 10 and 15 ml.  This afternoon he took 20 ml in 15 minutes.  15 minutes is the max. time right now because that is half of what his normal feeding time will be and we don't want him to tire out.


Nicholas has been to 2 different NICUs now and in both instances you see the same thing: a lack of parents.  We do see some every now and then but usually it's not very often.  Then there are some parents who don't go at all.  We've asked nurses in both places about this and they said that the parents usually don't start coming until they're getting closer to going home.  It's just sad to see.

A Talk With the Nurse Practitioner

Nicholas is having another good day.  He is still on 1 liter and at 30% oxygen.  He started receiving bottles again but only 1 a day and only for 10 minutes.  We spoke with the nurse practitioner and voiced our concerns about Nicholas being pushed too hard too soon because he was just weaned back down to 1 liter on Friday.  She assured us that they will go slow and won't go above a specific amount before they try Nicholas on 2 bottles and that probably won't be until Wed. at the earliest.  We just don't want Nicholas to regress due to being so tired from taking bottles but we also do know how important it is that he does still take them.  Like the np said it is a very fine line. 

Before Nicholas comes home they will perform a MRI to see if there is anything to be concerned about now or in the future.  There has been nothing so far to indicate there is anything to worry about but this will show more than the ultrasounds can and will also give Mariah and I a clearer picture of what to expect in the future. 

Nicholas currently weighs 6lbs13oz.

Mariah and I would also like to thank everyone who has helped us out through this very difficult time.  We can not say thank you enough for being there for us.  We are very blessed to have such good friends and family. 

Saturday

Nicholas is doing well today. 

Trying Again

Nicholas was weaned down to 1 liter this morning on his flow.  So far he has not had any spells.  Nicholas has also had his feedings changed.  They are as follows: 8,12,4,8 (during the day) Nicholas will be fed 70ml for each feeding and from 12am-6am he will be fed 21ml every hour.  His milk will also be coming from a different machine that has a bag attached to it.  They will also do his "cares" during the day during those times and at night he will only get his "cares" if he is awake.  This was changed to let Nicholas get the most rest so he can grow and get better.

Eye Exam

Dr. Stokes did a follow up eye exam today with Nicholas and he was VERY impressed with what the injection has already done.  He had to check to make sure he had the correct baby, lol.  Everything is regressing and going as expected thus far.  Nicholas will have another eye exam next week too.  His eyes have to be checked frequently because if his condition worsens then he will have to get another injection asap.

Nicholas has not had very many spells today either.  He had a couple after his eye exam and his nurse turned his flow up to 3 liters but after he settled back down she was able to wean it back down to 2 liters.  Nicholas did have 1 desat. last night but he brought himself back up and that is 1 of the things he must do consistently before he can come home.

Readjusting

Nicholas is getting settled back in at McLeod quickly.  He's back down to 2 liters on his flow and that's where he was at before the trip to Charleston.  McLeod has listened to most of the suggestions by MUSC thus far.  The only 1 they were hesitant on was the bottle feeding.  They asked if we were okay with Nicholas still receiving his bottles and we opted to wait.  We would just like to see if that is the reason why he seems to be stuck on the higher flow. 

The new changes involve a diuretic daily, a change in the steroid being used in his respiratory treatments (this will go deeper in his lungs and there will be more of it going in), and of course to hold off on the bottles for a little while.  These changes were suggested by the pulmonologist.

Nicholas currently weighs 6lbs6oz and is 17 3/4" long.

So Far So Good

So far the injection has worked on Nicholas' eyes.  He will be checked again next week either by Dr. Stokes or Dr. Teed.  This should be treated just as any other accomplishment in the NICU and that is cautiously.  What I mean is that there is still the possibility that this can come back as it has happened to other babies before.  Do not think that Nicholas is in the clear because the injection is working right now. 

We were also told by the doctors there that Nicholas is far from coming home.  That is a little disheartening but at least we know a little better what to expect.  1 month after his due date would be a big accomplishment according the doctors at MUSC. 

They did make several suggestions as far as the treatments and feedings that Nicholas has been receiving and we will update that as soon as we hear from McLeod what their plans are.

Another Surprise

This afternoon we found out that Nicholas has Retinopathy of Prematurity (ROP).  He will be taken to MUSC tomorrow morning (Friday) and on Saturday he will be given a shot to help correct this problem.  The shot has a success rate of 75% but they may have to give it to Nicholas more than once if it does not work.  They should be able to tell within 3-4 days if the procedure has worked or not.  He may have to stay at MUSC for 7-10 days depending on what the doctor says.  Nicholas will have to be rechecked by the same doctor who administers the shot.  It is possible that this could go away in a couple of days but rather than wait and see they think they should go ahead with the shot.

This is a very serious matter.  Nicholas could eventually go blind if this procedure does not work.  Dr. Cox thinks that the cause of this was Nicholas having to stay on the ventilator for so long.

There may not be any blogs on here for a while and I suppose word of mouth will be the only way you will know what is going on.    Please pray that this procedure works.  He has been through so much as it is.

With a Little Help

Nicholas took his entire bottle today (50 ml) with the help of the Occupational Therapist and his mommy.  It took them the entire 30 minutes but he took the whole bottle.  Hopefully, that trend will continue when it's just Mariah and I giving him his bottle.

Nicholas hasn't had very many spells today and usually his alarm only goes off when he's holding his breath to use the restroom or when he's stretching. 

Nicholas currently weighs 5lbs14oz.

Okay

Nicholas is having an ok day today.  He's been having a little more reflux than normal so they went up on his flow to 1.5 liters.  His oxygen is still at 40%.  The Occupational Therapist worked with Nicholas today while giving him his bottle.  She will help Nicholas learn the proper way to take the bottle as well as teach Mariah and I the correct way to give him the bottle. 

Nicholas is currently 17 3/4" long.  He weighs 5lbs10oz.

Dr. Harlan talked to us last night and he said it is looking Nicholas will probably be coming home around his due date and probably not before.  It is a little disappointing but we know it's all in Nicholas' best interest.

12 Weeks Old

Nicholas is doing well today.  He only took 10 ml from his bottle this morning and as a result we will be getting a consultation from the Occupational Therapist in the near future if Nicholas' intake does not increase.  Nicholas must be taking full bottles at every feeding before he can come home and it is imperative that we learn as quickly as possible the correct method to give him his bottle. 

Nicholas' nursery is almost complete.  We still have to hang his pictures and name on the wall and the mattress will be here tomorrow.  Those are the only 2 steps remaining.

Nicholas currently weighs 5lbs10oz.

Happy New Year From Our Family to Yours

25 then 40

Last night Nicholas took 25 ml from his bottle.  This morning he took 40 ml from his bottle.  It was not surprising that he didn't take as much last night because he had his previous bottle about 6 hours before.  It was encouraging this morning that he is almost back up to taking the full amount. 

There have been a couple of people asking about visitors when Nicholas comes home and as of now there is nothing concrete as to what we will do.  We will discuss this with the NICU doctors and go from there.  It is RSV season and since Nicholas was born so premature he is at a very high risk to get severe RSV (which some babies die from).  When we do come to a conclusion we will post it on here before he comes home.  Nicholas has already spent a lot of time in the hospital and we will do WHATEVER it takes to prevent his rehospitalization.