I Wanna Go Home

There's a song by James (my favorite band, who's concert we had to miss because I was in the hospital and Bennett was only 3 days old) that has the chorus

I wanna go home, right now
I wanna go home right now
I wanna go home, right now
I wanna go home.

That's how we've been feeling the past few days.  I think Chris and I have both been singing it.  The end is in sight, but still a bit unknown.  I think we've been a little frustrated all weekend, and also today.  On Friday there had been mention about maybe going home in the middle of the week.  Chris thought he remembered someone mentioning Tuesday as a possibility.  Well here it is Monday night, and we still didn't seem to have much definitive progress.

Earlier in the day the nurse practitioner said the decision of when we can go home is up to Bennett's cardiologist.  She tried getting in touch with him, but he was "un-pageable".  Finally she emailed back and forth with him and we were able to meet with him a little after 8:00 tonight.

Meanwhile he had another ECHO showing things as being normal for Bennett.  He had blood drawn which showed elevated creatinine levels.  Basically his levels are similar to those of a 10-year-old.  So tomorrow there will be additional tests to try to figure out that issue.  Bennett also had an x-ray.  Ugh, I felt so bad for the little guy- strapped to a table in just his diaper and I had to hold his arms steady above his head.  There was a lot of loud screaming.

As a write this, Bennett is taking his car seat challenge.  This is a requirement of the hospital before he can go home.  He has to be strapped in his car seat for 90 minutes while being on the monitor.  If there are any major drops or peaks to his stats during those 90 minutes, he fails.  What's annoying though is that Bennett's car seat is only rated for babies over 5 pounds.  Since Bennett is still below this weight, we had to buy a car bed.  This allows him to lie flat in the car.  However, it's strapped directly into the car and isn't easily removed.  This means we can't easily remove the car seat to put him in a stroller, etc.  But it was either this or pay twice as much for a standard car seat that is rated for 4 pound babies.

Also before discharge we'll have to meet with someone from nutrition to learn the secret formula to his high calorie breast milk (they add formula powder and other ingredients to turn 20 calorie breast milk into 30 calorie).  We also will need to get his prescriptions filled so that we can have practice drawing them up.  (Currently they have been coming pre-filled from the pharmacy.)  Plus arrangements need to be made for visiting nurses, we need to find him a pediatrician, and I'm sure a million other things.

But back to our meeting with the cardiologist tonight.  I asked when we could go home.  He said this week.  He talked about the various tests tomorrow re the creatinine issue.  Wednesday was mentioned.  And then I asked about if tomorrow would even be an option.    It's a possibility, assuming all the tests and everything else can be arranged!  If it does happen, it will likely be later in the day, but that's ok by us!

If tomorrow does become an option, it's going to be a busy day!  I sometimes feel as if there are a million people coming and and out of the room- nurses, clinical assistants, plebotomists, people from lactation, social workers, doctors, case managers, neurologists, etc.  I think that tomorrow it's going to be even more hectic!

And as an aside, this makes 3 posts in a row where the titles have been songs.

I've got no tubes...

Sung to the tune of I've Got No Strings from Pinnocchio

I've got no tubes
To hold me down
To make me fret, or make me frown
I had tubes
But now I'm free
There are no tubes on me

Yup, that's right.  The little guy lost his feeding tube this morning.  Now he's only connected by the standard monitoring wires, and they do disconnect those from time to time.

We have progress!

So much has happened today! Bennett...

• had his PICC line removed.
• had his pacing wires removed 
• took a bottle at multiple feedings today (yesterday he guzzled one down but then didn't want one at a second feeding)
• nursed from the breast for 20 minutes!!!!!
• and yesterday he had his nasal cannula removed.

On the not so fun side, we just learned that since his car seat is only recommended for over 5 pounds, we'll need to find something else for him until he reaches that weight.  :(  So rather than spending lots of money on a new carrier style car seat that is rated for over 4 pounds we'll probably be buying (through the hospital) a car seat bed that he can use until he reaches 5 pounds.  Hopefully we won't get much rain or other icky weather until he can fit in his regular car seat as I imagine it will be more of a pain to get him in and out of the car.

But maybe some of the best news?  Looks like we're aiming for the middle of the week to be able to take Bennett home!  Since he will still be on some meds we'll start to get training on how to administer those.  I guess now we just need to really crack down and find him a pediatrician.

Ch-ch-ch-changes...

As we were pulling into the parking garage yesterday, we got a call that Bennett was going to be moving out of the Cardiac ICU to "the floor".  So withing about half an hour of us getting there, he was in his new room.  Talk about culture shock for poor mom and dad!  We were used to the nurses doing pretty much all of Bennett's care in the ICU, but now it's pretty much up to us.  Makes sense, but we weren't ready for that.  Combine that shock with a horrible attempt at breastfeeding, and I was a blubbering mess yesterday.

Today was a much better day.  I think it was the fact that we now knew what we were up for.  And we had bags in the car so that if we decided to spend the night we could.  I have a bit of Mommy guilt that I'm not staying there, but they keep saying it's ok.  We decided to go home tonight, but this weekend I think we'll be staying. 

Sorry I haven't updated with new pictures in a while.  They're up on Facebook, but not here.  Blogger is a blocked site at the hospital (or at least access is very limited) so I can only update from home.  I'll try to get some new pictures of Bennett soon though.

Week Two: Sep 30th - Oct 6th

Sep 30^th

When we went in to visit you today we were told that tomorrow your breathing tube would be removed.  I asked when we would be able to old you.  “You haven’t held him yet?” the nurse asked.  We explained that you had been taken away right after birth.  I’m glad I asked but wish that we had asked sooner.  We figured we couldn’t hold you because you were hooked up to so many things. 

Oct 1^st

Yesterday Mumma held you and today Daddy was able to.  It’s still a bit of a process because you’re hooked you to so many things, but we held you for about 2 ½ hours passing you back and forth.  Mumma and Daddy also got to change your diapers today.  And your diaper was the very first one that Daddy has ever changed.

 

Oct 2^nd

The nurse we had today wasn’t nearly as nice as yesterday’s nurse.  She was very afraid of your temperature dropping so we were only allowed to hold you for about 15 minutes at a time.  Your bandage has now been removed and we can see your scar.  Uncle Andrew says you were in a fight with ninjas.

Oct 3^rd

Both Mumma and Daddy had the opportunity to hold you again today.  After going a week without being able to, we gladly take any opportunity that we can.  You’re still very bundled in blankets when we hold you so it’s hard to actually feel you in there, but that’s ok.

Oct 4^th

We’re working towards getting you ready to move to “the floor” (the regular cardiac floor) before you are able to come home.  One thing you have to be able to do is maintain your own body temp.  Tonight they started that by keeping the isolette open.  Today was also a big day because you and Mumma had your first try at breastfeeding.

Oct 5^th

When Mumma and Daddy visited you today, you were still in the open isolette.  We left to go home around 4:00.  Two hours later Uncle Andrew called us and said that you were now in a crib.  What?  We were confused but also way excited.  Way to go, Bennett!

Oct 6^th

You had a great accomplishment today; on your two week birthday- you were moved to the floor.  Mumma and Daddy were pulling into the parking garage when we got the call that you would be transferred.  It’s a much different environment with Mumma and Daddy providing a lot more of your care.

Next Steps

At this point Bennett is doing really well.  Everyone is really surprised at his great progress.  So what's next?  

To move from the Cardiac ICU to "the floor" he needs to be able to maintain his temperature outside of the isolette.  I guess he's doing this well, because they started opening the isolette up last night, and tonight he was moved to a regular crib!  He also needs to be either 2 kilos or 2.2 kilos.  The doctor we spoke with yesterday couldn't remember which it was.  Currently he's right around 2 kilos, but if he has to be 2.2, that means he needs to gain about half a pound.

At some point he needs to learn to take food orally.  I'm not sure if that is a skill he needs to learn before he is moved or if he can learn that when he's on the floor.  We attempted breastfeeding today, but he was pretty sleepy.  But he got to taste some milk in his mouth.  We just need to get him to learn to latch.

As an aside, in everything I've read, I've seen how pacifiers are bad for babies if you want them to breastfeed.  Apparently that's not the case with preemies- especially in Bennett's case where for about two weeks now he hasn't taken any food orally.  The pacifiers are good because they help them learn to suck.  So I guess I have to bite my words (and the urge to throw one out today) and let him have it.

In regards to Bennett's feeding, he was being fed continuous breastmilk through a feeding tube.  Today they changed it from continuous to bolus feeding.  This means they are now timing it to get him used to having a full and then empty stomach.  So they are feeding him every three hours, but to start off that feed took an hour and a half.  When we left they had cut it back to an hour and 15 minutes, and they will continue to shorten the time it takes to feed him until they get to half hour feeds.

Once he is moved to the floor, we're almost home.  He likely will only be there for a few days for us to learn how to  do all of his care.

Once he is discharged, we will probably be back monthly for follow-up with the cardiologist, and depending on how he is doing, that will be changed to less frequently.

So the end is in sight.  We don't know exactly how long it will be, but probably he'll be going home in the next couple of weeks.  Yay, Bennett!

An update

Here are a few updates.  We've both been meaning to post with an update for quite some time now, but sitting down in front of the computer and getting our thoughts down in a coherent manner is difficult.  A few days ago I started making notes to myself of things that I wanted to mention, and it just took me a few minutes to figure out what one of my notes meant.  So, let's get this out before I forget even more.

Bennett milestones-

• He's started getting breastmilk via feeding tube.  They tried this one day earlier in the week and had been giving him too much too soon, so they stopped and started again a couple of days later.  He's now been getting it for a few days with no problems.  They have added some formula to the breast milk in order to give him more calories without increasing the volume of liquid.  They're hoping to help him increase his weight more quickly.  Although I understand the logic behind it, I'm not sure how I feel about this.  Isn't breastmilk supposed to be a superfood that shouldn't need to be supplemented?
• Earlier in the week (I don't remember which day now- Tuesday, maybe?) they turned off the meds that had been paralyzing him.  It was great to slowly start to see him moving around more.  First, his eyes opening, then him reacting to touching his feet, and then moving his arms.  Now he's moving around like a normal little baby.
• On Wednesday he celebrated his 1 week birthday. In true scrapbooker fashion, I made a little sign for him.  I plan to have these every week to begin with, then every month, as a way to show his growth.
• When I was pregnant I knit a pair of socks for him.  We had brought in some other socks/booties but they've all been huge on him.  The hand-knits fit perfectly!  And of the nurses who come by rave about how great they are.  It almost makes me want to knit another pair- except the needles that I used are so tiny it hurts to knit them.
• On  Friday he had his breathing tube removed!  We got to hear him cry.  Such a wonderful sound.  
• Thursday I got to hold him for the first time, and we've been able to hold him pretty much every day since then.  Each nurse has a different way for us to hold him, and some like him piled up with blankets more than others, but it's great to be able to do this.  I just wish I had asked earlier.  We had kind of thought we weren't allowed since there were so many tubes/wires.  I asked one of the nurses on Thursday when I would be able to, and she seemed shocked that I hadn't held him yet.  She quickly made sure that I was able to do so.

Stuff about Mumma-

• Pumping has gotten much better!  There are some better days than others, but overall it's going well.  Monday one of the lactation consultants came by.  She spent about half an hour with me, massaging and squeezing my breasts to work out the clogged ducts.  We got 150ML out of me, compared to maybe the 15-30 I had been getting on my own.  Wow!  I haven't gotten nearly that much since, but it's been going well.  And when I start to have problems I know how to fix them.  And she's come back frequently since then and helps me with little problems I'm having.  Chris and I kid around that Kim is my new best friend.  :)  I was having some problems with my pump yesterday, but Chris and I came up with a work-around.  We'll need to ask Kim if it's a problem with the pump or if it was something with me- maybe another clog or something.
• After the struggles that I was having with pumping, the nurse tonight commented that I have so much milk at the hospital now that I don't need to bring in what I pump at home- we can just freeze it and keep it for ourselves.  I guess it's nice to know I'm already building up a stash.  Apparently I'm a very good producer and I have no issues with my supply.  She also suggested that since I have such a good supply I shouldn't set an alarm at night and that I should let myself sleep, but I disagree with that advice.
• When I was over at the Brigham, the nurses were constantly checking my feet to see if they were swollen.  They never really got that bad.  Monday they were very swollen.  Tuesday they were just as bad.  Wednesday I went over to my OB's office to follow up on some paperwork and asked if a nurse could take a look at my feet.  They brought me back and had me do the normal OB appointment stuff- blood pressure check, weight check, and urine check.  Odd just for swollen feet, but whatever.  Apparently my blood pressure was rather high.  20 minutes later they re-checked and it was fine.  But since it was high my OB freaked out.  No one ever looked at my feet, but she sent me off to have some blood work done and to come back the next day for another BP check. She also wrote me a script for a diuretic in case I was retaining extra fluid.  By the time I got home, without taking any pills, my feet were much better.  The next day, my blood pressure was fine.  This OB likes to worry about everything!
• One nice thing about going back to the OB was that because of the weight check, I was able to see how much I've lost.  But the results surprised me.  On Wednesday, a week after giving birth, I had only lost 5 pounds.  That's not much more than Bennett weighs.  We had just eaten, so that may have accounted for some of it.  By Thursday's appointment I was down another 2 pounds, so I imagine a lot of it was food/water weight.