30 March 2012

The Blip...

Remember how I talked about how the home stretch can mean different things?  Well, his home stretch is starting to show us what it means.

The first type of home stretch was when you're going and going and going and then suddenly there's the finish line!  -- Yeah, that's not Samuel's home stretch...

The second type I mentioned was when you see it for quite a while before you finally get to it! -- Slowly, but surely progressing?  Also not Samuel's home stretch, he's a quick little baby...

Finally one where you see the finish and then you're sent off into a different direction -- Yup, this one is Samuel's home stretch!  As of yet, who knows how many detours we'll have to make on the way to the finish line, but we just made one.

What I didn't tell you when writing that post is that we thought Samuel would be coming home today (Thursday).  Well, that didn't exactly happen, everything was going great for it until yesterday, so this was a very sudden detour indeed.

In order to fully explain I have to back up to Tuesday night.  We opted to have Samuel vaccinated and as discharge was getting closer and closer we decided to give them to him on Tuesday.  So Tuesday night, during the first cares of the night shift, we gave him some immunizations.  Of course he didn't entirely appreciate it (and by that I mean turning beat yet and crying as loud as he could with each shot), but that's to be expected.  Most people, child and adult alike, don't really like shots.

Tuesday night he was extra grunty (preemies come as a small bundle of grunts, I mean squeaks, ok, so they just makes lots and lots of special preemie sounds).  Which meant I didn't hardly sleep.  On Monday I had started sleeping in Sam's room so we can be nursing in the middle of the night as well.  Him grunting and fussing just a little all night made it mighty hard for me to sleep.

That morning he only took 20mL of his 50mL bottle, then the next feeding he nursed very lazily.  Samuel was also being very grumpy.  He seemed to calm down some so we tried to do his 90 minute car seat check (mainly to see that he keeps his oxygen up while in the car seat) and failed it within the first 10 minutes.

Then he seemed better, he ate really well at the next feedings, we managed to do the car seat check again and he passed with flying colors.  He seemed a little more content again.  Then night shift started.  The first feeding for night shift he woke up an hour late.  Now I understand flexibility in scheduling, but he was waking up like clock work up till that point, him waking up a whole hour late was unusual.

We gave him a bath, checked him over and Ben settled down to give him another bottle.  Again he only took 20mL of the 50mL, not a normal thing for Sam to do.  We put him back down in his crib, checked his temperature again and decided to bundle him up warmly.  They swaddled him in 2 more blankets with hot packs and then laid another blanket on top.  They also put a hat on him (infants temp control through their heads).

Based on when he took the bottle he was due to eat again at 1:30am, but maybe earlier as he ate so little.  He didn't wake up to eat at the next time, at 1:45 we decided to try to wake him up to eat.  We got him into position, but no matter how hard we tried, he just wouldn't.  We managed to get him to latch and swallow some milk that I squeezed out, but that was it.  The decision was made, we were going to have to put a new tube down his throat and he was going to get moved into an isolette (you know, the one that he wasn't ever in before because he went from the fancy one to the bed).

******continued writing on Friday******

With that decision I decided to go to sleep, so I laid down on the little sofa/bed thing they have the rooms and passed out almost immediately and didn't wake up until 6:30am.  It sounded like things were pretty calm while I was sleeping, Samuel took the tube feeding well, then right before I woke up the nurse managed to give him a full bottle.  So that was great to hear, that meant that he was on the rebound, eating for himself again.

So I pumped, headed to the shower, grabbed breakfast and tried to relax a little.  We dilated his eyes at 7:30 for his eye appointment (he was not happy about that, it took 2 nurses to get his eyes open enough for the drops...  At 8am (this is all Thursday morning now) the decision was made to see how he does back in the crib.

The belief was, as mentioned already, that it was a reaction to the vaccines, with that the doctors thought that if we can just help him get back to his normal place we should be able to take the supports used to do that away and he should be fine.  So out with the crib.  After he was in the crib I realized I never took a photo of him in that isolette than he only spent about 5 hours in (but he'd never been in one like it before).  Oh well...  You could say I was somewhat tired and stressed feeling at the time.

The opthamalogist then came around 8:30 to do the eye exam.  They were trying out new equipment that actually takes video of the exam from his perspective.  The tricky thing they were finding is that even though the doctor can see things just fine, if he didn't have the linse lined up just right, it didn't show up on the monitor.  He couldn't however look at the monitor to see because that would point the camera at the monitor.  Overall they seemed to like the new equipment they're trying out and that "issue" is more a matter of practice than anything else.

My hope going into the appointment was that his eyes would continue to check out as immature (which is exactly what they are still, as he isn't due for another month to be born!) and we would be told to he'd be seen in 2 weeks.  Well, that didn't exactly work out that way...  They found some beginnings of retinopathy of prematurity on the outer edges of both eyes.  It isn't much yet, so we are now on the weekly appointment schedule.  How many of you know who Stevie Wonder is?  Yeah, ROP (retinopathy of prematurity) is why he went blind.  Now with this kind of monitoring we are able to catch ROP soon and there are procedures that can be done when it is caught at the right stage that can prevent blindness.  Hence weekly appointments.  If it looks more concerning in a week, we'll be going in even more frequently.

So that wasn't exactly the news I wanted to hear from that check up.  But we have a preemie and with that comes all sorts of fun preemie things.  I know my worrying about it isn't going to help at all, so I have decided not to be worried.  Samuel is doing fantastic despite these "blips."

Yesterday (Thursday, the day after the long night), he was back to his normal Samuel self again.  He was being feisty during cares and checks (definitely did not like his diaper getting changed again), demanded food when he was hungry (which I think he was playing catch up for not eating much the shift before, he only had 2 1/2 of the 4 feedings) and was just overall a more content and happy baby.

Along with putting him back in a crib they weaned him back off of oxygen by 3pm.  So he is no longer on oxygen again!  They aren't sure if they will be able to keep him off, so they might train me on the monitors and oxygen this weekend, just in case he goes home on it.

Last night we also had some fun.  He was being fussy after his 6:30 feeding.  I had already tried to burp him and only got littles ones out of him (he can sure burp loud though, don't let his size fool you!).  I tried holding him and he didn't quiet down.  As he just ate, I didn't try feeding him because he showed me that he was clearly done already.  I tried holding him in different positions, but nothing seemed to help.  So I checked his diaper.  Sure enough he'd pooped.  I started cleaning up, had a clean one under him, had pulled out the dirty one and was just about to finish wiping when he squirted out a bunch more.  It kind of sounded like a ketchup bottle when it's almost empty and it squirts out a glob more...

Well he really squirted and got his sleeper dirty, his swaddle sack dirty and his sheet dirty...  So I took that recently fresh diaper out and put a truly fresh diaper under him, closed it up real quick and just waited while he grunted and pushed the rest out.  This was also happening at shift change, so when the night nurse came in I let her know what happened and said that this might be easier to clean up with a bath.  So that's what we did!  The little guy got 2 baths for 2 days in a row!  That normally doesn't happen, but he was a messy little pooper....

That is basically what our little blip was.  We went from being told he'll likely discharge on Thursday to being told the earliest he can discharge is Sunday (which is code for he MIGHT go home Sunday, but it easily could be after Sunday).  So we are back to not knowing how much longer we'll be here, but knowing that he is receiving excellent care and we only want to bring him home when he is truly ready to be brought home.

After all, can you imagine how much of a basket case I would have actually been in if we were home?  As it was, I was slightly emotional as this was happening in the middle of the night, but I very tired from trying to not fall asleep and just wanting to sleep, but wanting to make sure Samuel was ok.  When I woke up I was able to simply be extremely grateful that it happened before we were discharged.  I know I keep saying how the staff is here great and I truly mean that.  I know I don't have to worry about Samuel here.  Today he's still doing great and I'm doing great and we are just hanging out waiting for him to show us he's actually ready to go home.


Oh and those of you on facebook, the crib did beat him home.

27 March 2012

Quick Note

So I just wanted to tell you all about how amazing Samuel is.  Of course I think that, I'm his Mom.  However the nurses and lactation consultants seem to agree.

He needs no aids to latch.
He latches himself (I just guide him to latch correctly)
He has perfect form
He does not drop his oxygen while nursing, rather he brings it up really high and keeps it there!

He has perfect form
He has great oxygen levels
He has been doing it correctly since he received his first bottle last week!

He wake up so well for his feedings and does just an amazing job.  The Lactation Consultants and nurses were all amazed that we don't have to use any aids to get him to latch.  The nurses are thoroughly impressed with how well he eats from a bottle as well.  They would love for Samuel to give the other preemies lessons on how to eat.

We have truly been blessed with an amazing little boy!

The bottles are so that he still takes in some fortified milk every day, this helps him with his energy level and his weight gain.  After we leave the NICU, we'll work with our pediatrician on how long we will continue giving him bottles.  Right now we are to give him 3 bottles a day (that means he nurses 5x and will take a bottle 3x).

If he gains weight a little better than last night, we should be home in a few days!  Prayer for everything to go smoothly and that he will have received all the care he needs before heading home!

25 March 2012

The "Home Stretch"

Before you get too excited about the title of this point, I want to give you a running analogy.  For those of you who don't know, I got into running about 2 years ago and love it!  It is very addictive I think!  I need to get back out there, because I would love to run a half marathon sometime this fall.  Alright, digressing...

Anyways, different races have different kinds of home stretches.  Let's talk about 3 different kinds.

  1. Some races you run and run and run, then all of a sudden the finish line is there.  You couldn't really see it coming, it just sort of pops up out of nowhere.  Then you're finished.
  2. Other races you can see it for miles until you finally finish it.  Those aren't nice because you can tasted the finish, but it feels like it's being kept from you like candy on a string attached to your hat. No matter how far you go, it just never feels like it gets closer.
  3. Then there's even meaner races (right now I am thinking of the San Diego Rock'n'Roll Marathon I did last summer).  In that race (while I was in a lot of pain because my knee hurt like crazy) you could see the finish around mile 22sh I believe, but then you had to run around this peninsula/island thing and you couldn't see it for a few miles.  So cruel!  It was sooo close, you could see it not that far away, then you had to run where you couldn't see it....
So, how does any of that have to do with Samuel going home (some day)?  Basically I say we are on the home stretch because we have now been given the orders to feed orally whenever he is awake (on Friday we could feed him orally twice a shift and that went very well).  Remember how one of the big things is that he has to be on 100% oral feedings with 2 days of weight gain?  Yeah, we are getting really close.

The problem is, even though we are getting really close we really don't know what close means...  Does that mean he will start eating orally and gaining weight well and we'll be home within a week?  Maybe!  Or is his energy not quite up to snuff and after eating more he will be sleepy more, thus keeping us here past Easter?  Maybe!  We just don't know at this point, it is too early to tell.

Oh and remember how I mentioned that his oxygen levels haven't been as spectacular as before?  Yeah, we got to get that more under control too.  How long will that take?  I have no idea.  Maybe within a week or maybe not until after Easter.  So, yes, we are in the home stretch and we could be going home very soon (note to self, get that car seat installed!), but we could also be here for several more weeks.

What I do know, is that we want him healthy and strong so that he can handle what life at home means.  That's a life without monitors to make sure he's breathing and has his heart rate where he needs it.  It's also a life where being too tired to eat is not an option, there will be no more tube feeding (which is not a favorite of his anyways).  We are simply thankful for the excellent progress he has made so far and we just pray that he will continue moving forward no matter how quickly.... or slowly!

Samuel means "God heard" and we surely know that God hears all our prayers, including the ones about Samuel!  We have definitely been blessed with an amazing staff at this NICU, which is one way that God has heard our prayers!

22 March 2012

Long Time, No Post...

I know a week and a half has gone by since I last posted.  Here's a good rule of thumb, if I haven't posted recently, that means not much has happened and what has is what is expected.  As is the case since the last post.  Besides I am constantly busy doing things as well, which I will explain more in this post.

So he started nursing last week on Monday and he has taken in quite a number of full feedings since starting.  We have not been given the orders yet to do 2 attempts a shift, but he is started to do awesome at 1 attempt a shift.  They look for things like taking in a full feeding while nursing (not needing to supplement with a tube feeding), waking for all feedings and desiring to suck or nurse at all feedings.  Basically all the criteria they looked at to start him nursing, they look at all over again to add a feeding per shift.

That may seem silly at first that they use the same criteria, but it really makes a lot of sense.  Remember how the milk in the tub feeding is being fortified with extra calories?  Well, when we nurse, he isn't getting the extra calories, as there is really no way to fortify the milk as it is coming out.  Also, nursing takes a lot of energy.  What you end up with is a baby using a lot more of his energy in one shot instead of throughout the day AND he's getting less calories to draw from.  That makes for a very tired baby after nursing.  When we first started nursing it was very common for him to sleep through 2 or 3 feedings, whereas before nursing he was awake for pretty much all his feedings (sleeping through an occasional feeding very seldom).

After about a week and a half of nursing he is starting to be awake more again for his other feedings.  He is still not as awake as he was before, but he is making progress in that direction and is getting close.  As the staff here tells us, it is very common to be put in a holding pattern like this, as the baby develops, gets stronger and has more energy.

I would also like to add that he has been getting full feedings in when we try to nurse.  He knows exactly what to do and he wants it!  In fact, yesterday morning we weren't sure if we were going to nurse or not, and as we had to change out his clothes (he had peed out his diaper) I was holding him.  He was being somewhat fussy, so I was trying to hold him in different ways to find one he liked, and well, he liked being positioned to nurse.  I think he was very confused that he couldn't just nurse with my clothes in place like normal...  So we nursed and he did great!  Samuel sure knows what he wants!

The other "big" news is that he has now been back on a nasal canula since last Friday.  I don't remembered if I mentioned this or not (but guessing I did), but it is extremely common for this to happen, especially when the parameters change and they start nursing.  With all his energy being used on eating, he doesn't have as much energy to keep his oxygen up!

One of the doctor's was in looking at him 2 days ago and suggested giving Samuel some medicine that would help him get ready of the extra fluids in his body.  While it is normal for babies to be on and off and on and off of oxygen, he is needed a little more support than in the past.  Even on the CPAP that oxygen was generally set at room air or slightly above (21%), but this time he's in the 30s% for oxygen on the nasal canula.  The doctor said that if the lungs and wet it can cause them to need oxygen, then he went on to explain a condition some preemies have that have to do with the lungs and moisture.  He didn't think Samuel has been exhibiting signs of this condition because he hadn't really needed much oxygen in the past (and as I was very tired when he was telling me about it, I have no idea what it was...).  Now Samuel is getting some medicine to help him rid himself of extra fluids (his legs and feet have been kind of puffy, showing extra fluid retention), and as he has shown an ability to gain weight despite the meds, they are giving him some more.

The doctor told me that nothing he says can prepare parents for the amount of pee, that made me laugh. He's had some rather large wet diapers and we have had to change his clothes and bedding a little more frequently...  :-)

Last weekend was also the weekend of 2 baby showers.  I'm sorry if I did not invite everyone I intended to, I have been really preoccupied and tried to get everyone invited, but that doesn't always happen.  The showers were really good and we had company from out of town come.  I did leave Ben to entertain them, as I am rather busy with Sam.  Ben's Mom came out for the first time, so it was great for her to see Sam.  My Grandma was also out for the first time, which meant it was the first time we had 4 generations together (though we didn't get a picture of my Grandma, Dad, myself and Samuel together... oops!).  My Dad was born the day after my Grandma's birthday and Sam was born the day after my birthday, so that is a neat "family tradition."  Ben's cousin also came out with her 2 girls.

Let's just say, between Samuel starting to nurse (and not knowing which feeding time he is actually going to nurse) and the baby showers I got very off on my pumping.  Actually during the last 3 days I have pumped just over half of what I was pumping up till then.  So this week I have been extremely busy pumping like a crazy person to get my supply back up.  Today has already been better, but we'll have to see how the rest of pumping goes the rest of the day to be sure.  I know that Samuel is nursing and taking some of the supply himself, but he's definitely not taking half of my supply away with 2x nursing and at first it actually caused my supply to increase.  Nothing produces milk better than a nursing baby!  But considering I am just 3oz behind where I was at at supper time yesterday, today is already looking MUCH better.

That's all I have, Samuel is doing great and hopefully in the next day or 2 I'll actually update my facebook photo album as well...

12 March 2012

Nuzzling, Nursing and No More Canula!

Time has just been flying past!  I feel like I had just posted yesterday, but alas... it's been a whole week!  There have been a few developments since last Monday, mostly dealing with eating.  :-)

For the Moms' planning on nursing their babies they encourage doing something called nuzzling once the baby is showing to be awake more and the need to suck on something.  Basically you position the baby as if you were going to nurse, only you had pumped out all the milk you could just before this.  You don't want to have too much milk there, because the point isn't to actually swallow the milk (though the baby might do a bit of this too, just the nature of things when you are constantly producing more milk), the point is to simply get used to the idea of being there (of course sucking and licking is encouraged!).

So last Tuesday we were given the go ahead to start nuzzling!  Basically Samuel's spent most of the time just hanging out there making occasional sucks from time to time, but last Saturday he was going to town!  He was eager to suck as much as he could!

Today I came into the NICU and was informed we've now been given the green light to start nursing!  Yippee!!  So basically starting today we are going to try to nurse one feeding in a 12 hour shift.  There are 4 feedings each shift.  As many of the nurses and lactation consultants have been good to warn me, this part of the NICU experience can be the most frustrating.  Yes, it's not fun to see him hooked up to a bunch of machines (which right now he's hooked up to practically nothing), but I think this is frustrating because Moms have expectations of the baby simply taking to it quickly when this is rarely the case with preemies.

So I have decided that whatever happens happens!  Which has been my attitude with Samuel pretty much the whole time.  I clearly can't control what happens, if I could have he wouldn't have come out in January!  This morning was our first attempt and lets just say, he was not really up for it.  I think he was more awake about 10-15 minutes before we starting trying to nurse, by the time we started finally he was falling back asleep (our nurse got called away briefly and that threw us off, that's ok though because as we do it more I will feel more comfortable to take ownership of just going for it).  We are about to try again this evening and he is usually very awake at this next feeding time, so we'll see if he's up for it this time.

In other news we took Samuel off his nasal canula last weekend!  This means he is doing great with his new oxygen parameters.  Ok, great might be a slight exaggeration, but he's doing good enough not to need it, he has his great moments with oxygen and then his not so great moments.  Next weekend when he turns 34 weeks gestationally, so I won't be too surprise if he's back on a nasal canula within the week, but that is all a part of being in the NICU!

We thank God every day for the amazing progress and growth Samuel has been having!

05 March 2012

Eyes, Crib, Nasal Canula

So a lot has happened since the last time I wrote, and I am sorry for not updating sooner!  Let me start with last Thursday, March 1st.

Thursday was a busy day for the little guy!  It started with a visit from a friend of mine I met on Iowa Ambassadors of Music (I went on that the summer after high school, we toured Europe as a band and a choir for about 2 weeks), so she is from Iowa but currently lives in New Mexico.  We got along really well on the trip, but this was the first time I'd seen her since then!  Well, she arrived shortly after they had dilated Samuel's eyes for his eye exam with the opthamologist.

Eye exams are pretty standard procedure in the NICU with preemies.  Preemies are at rist for something called Retinopathy of Prematurity (ROP).  Basically when this occurs the blood cells formed incorrectly.  In fact that just went crazy forming vessels and can actually cause the retina to become somewhat detached.  This is a very bad thing of course if it happens and can cause blindness.  If they catch ROP in the early stages there is a procedure they can do to try to prevent blindness.  So around 30/31 weeks gestation they get seen by an opthamologist who then sees the baby every 2 weeks until the due date (more frequently if he sees something of concern).

During his eye exam the doctor's special head gear he uses actually has mirrors on it that allowed me to see into Samuel's eye (of course I had to looking at exactly the right spot, so if he moved slightly I had to move more greatly to find Sam's eye again, but the work was worth it to see inside of Sam's eye!).  The doctor's verdict was that he has immature eyes, which is completely normal for his gestational age.  So for now, and hopefully until his due date, we'll be on the every other week routine.  We are happy to know his eyes are developing normally!

That afternoon he took a bath.  So he had a pretty busy day for a 5 week old baby who hasn't even reached his due date yet!  Ben was somewhat annoyed because on Wednesday Sam didn't seem interested in sleep all day, then he had such a busy day on Thursday, that both nights he was fast asleep by the time Ben arrived at the NICU...  Oh well, he'll see plenty wakeful moments with Sam soon enough I'm sure!

Friday he got moved into a crib!  So that was very exciting!  With him in a crib instead of the isolette, we have easier access to him and are allowed to pull him out to hold him at our discretion.  We were asked, however, to let him sleep if he is sleeping, so that he gets the maximum amount of good sleep possible.  He's been doing pretty well in the crib so far, though they heightened noise volume and amount of lights was an adjustment for him, it's not so muffled and dark as it was in the isolette!

The next big change was to his oxygen parameters.  They set the parameters for his oxygen saturation levels (which is what we look at to see his apnea spells) based on his gestational age.  So far they have pretty much been set at 85-92%.  However at 32 weeks gestation (which was Saturday) they go up to 90-95% and I was told at 34 weeks it will change one last time to 96-100%.  On Sunday we switched his parameters to the 32 week benchmark.  It's very important that they monitor this because having too much or too little oxygen can cause eye problems in the future.

Yesterday, the first day with the new oxygen parameters, he did really well.  In fact, when we kangarooed in the afternoon he seemed to want his paci, so I gave it to him.  It was during his feeding (a time when he's tended to drop his oxygen levels) and he did not drop them at all while sucking on it. Which impressed me because he was sucking on it quite vigorously for about 40 minutes!  He was sucking on it so hard the nurse could hear him on the other side of the room!

Today has been a different story with the new parameters.  In fact all day he's been up and down with his oxygen.  Every time the nurse went to grab a nasal canula to give him oxygen, he'd bring it up and keep it up for a while.  Finally this evening we put him on a nasal canula (you see adults with these in public, the clear tube that hangs on their ears and sticks in their nose).  This is very common when the parameters change.  In fact most of the time his oxygen dropped, it would have been in the perfect place for his old parameters.  It was great to see him so interested in his paci, this is a good sign for the oral feedings that will hopefully start little by little in the next 2 weeks.

We are pleased to know that Sam is progressing quite well and nothing that has happened as been out of the ordinary.  Today he's been kind of fussy, so I kept picking him up to hold him for a bit, then putting him back down to pump.  Before I'd finish pumping he'd be whining again and I would pick him up.  Welcome to parenthood, right?