reuben's adventure

In honor of Harry Potter's birthday today, we think there are several ways in which Reuben resembles Harry.  First, he lived when there was every reason for him not to.  Like Harry, Reuben was saved by several kinds of magic, in Reuben's case:  amazing medical technology, the love of family and
friends, and the power of his own choices.  And, like Harry, Reuben has some distinctive scars, 
though none of them is shaped like a lightning bolt.

When Reuben had the second pneumothorax (tear in his lung) and needed a chest tube to drain air from his chest cavity, Dr. Klein said, "Well, he just wanted all the scars.  Now he can point to his neck (the ECMO scars) and say, "switchblade" and his chest (the chest tube scar) and say, "nine millimeter," and people will think he's led quite a daring life."

Hope you're all staying cool.

Love,

Jonna, Eric, and Reuben

Today the boy suckled for about 5 minutes.  The nurse pulled back what he ate and apparently he got about 10ccs!  Jonna said it was a great experience.  I wish I had been there, but judging from his screams when she called I think I got enough of an effect by just hearing about it. :)   I think the rest of the attempts were not great and he fussed a lot but we think this is great for only having been trying for 4 days! 

It seems like everyday is something new and wonderful!  

 

Today is a big day for the boy.  They turned him down to 1 liter of oxygen a minute.   See, he can go home on 1 liter.   So we have some weanng of morphie, nitric oxide, and adavan but if he can stay stable at 1 liter he is on a level he can come home on.  Of course I bet they try to lower that, but at least we are reaching levels which can be left alone.

It was really hard being in the NICU when Reuben was very ill, but it is almost harder now that he is getting better.  He is awake as much a normal baby, but we are really limited on what we can do with him.  I honstely think his is getting bored sometimes.   If he were at home he would be moving to different rooms with us, going outside, being held, being in a swing, etc.  Here we can pick him up, which is wonderful but the scenery doesn't change, the sounds are pretty much the same all day, and the air is always a comfortable boring temperature.  His little brain needs stimulation.  Still an awake baby is much, much better than a unconcious one.  Every time he cries I remember how heart wrenching it was when he would cry when intubated.  The noiseless gaping of his mouth....this is better!  

Reuben is having a good day.  His nurse figured out how to get his leads to reach almost to the door to his room, so we could put him in his swing facing out the door.  He can watch people walk by in the hallway and look out the window a bit.  He ate and fell asleep happily in his swing twice today.

He also took quite a bit of milk from a dropper while I had my finger in his mouth, so that's good -- it gets him used to the taste and feel of taking food by mouth.  I'm sure he'll catch on to nursing after a while, it's just a big new experience right now.

Cousin Tina stopped by to see us, which was fun.

Eric has gone home for the night and I am staying with Reuben, since I just had two nights off.  (Thursday was my regular night and last night we took an extra night together just because we needed it.)  It's good for me to be here anyway to try to nurse whenever he's in a good mood.    

We are so enormously grateful that he is getting better and is going to live, and that overarching gratitude of course sustains us.  Being here in the NICU, we see every day that not all families are as lucky as we were.  At the same time, Eric and I are both getting very, very tired.  This has been a long haul and the end is not immediately in sight.  We still have big learning curves ahead, with nursing and then again whenever he can come home, learning the regular baby things along with his special considerations like the oxygen tanks and figuring out how to have some semblance of normal life while protecting him from respiratory infections.  It feels like we're running back to back marathons or something.  We so appreciate all your prayers and support.

Love,

Jonna, Eric, and Reuben

Reuben is having a good day -- the nitric oxide is down to 6 parts per million and Dr. Klein is content to wean him slowly.  This is partly for clinical reasons and partly because Reuben has already "bought" his NO for the next 21 days -- apparently the hospital's deal with the company is that the nitric costs $3000 for 4 days, and then the next 21 days are free.  I'm sure that will be just one more gasp-inducing item on the statements that are becoming quite a pile on the table in the dining room.  I started out with a file folder for them and quickly realized that a box would be a more appropriate storage receptacle . . . We are so lucky to have insurance!

They also weaned his morphine again -- he should be off of it within about 2 weeks if he continues to tolerate the wean rate they're using.  

He's still not thrilled about nursing, but we'll just keep working at it steadily.  Since he's only just learned to swallow, I'm sure it's a bit of a shock.  Also, healthy babies get a few days of "practice" sucking and dribbles of colostrum before the milk comes in, whereas Reuben has to deal with a healthy supply.  Even though I pump beforehand, I'm sure he gets more liquid to deal with than a newborn would.

The staff are starting to talk about "when he goes home," though no one is yet ready to say when that might be.  Although that was all we thought about at first, I have to say that now taking him home will probably feel a bit strange and nerve-wracking.  But we're looking forward to Eric's leave and spending a few weeks quietly together as a family.

Love,

Jonna, Eric, and Reuben

So far this seems to be Reuben's view of breastfeeding.  Unlike healthy babies who are intending to breastfeed, Reuben need to have a pacifier in order to get over his oral aversions after being intubated for 48 days.  Over the last two weeks he's gotten much more coordinated with that, and definitely has learned how to swallow (at first we kept having to suction his mouth because he wouldn't swallow).  He latched right on and started sucking, but when he actually got some milk his eyes flew wide open and he started screaming.  I had pumped about half the amount I usually would at that time so he wouldn't be overwhelmed, but today we're going to have me try to do a full pumping before he feeds so that he only gets drops until he gets used to things.

His blood gas this morning looked "beautiful" in Dr. Becky's words, and they're going to wean his nitric oxide to 6 parts per million today.  We also need a bath -- he's stinky again!

Love,

Jonna, Eric, and Reuben

Well, the big news today is that the boy gets to start nursing -- once a day at first while his feeding tube is hung, primarily for recreation and practice.  As time goes on he can try to do more for nutritional purposes.  We're very excited!

He's still statting very well on the canula -- actually he's at 100% all the time.  His nitric oxide has been turned down to 8 and he's doing great with that.

He had physical therapy today and did a marvelous job -- his neck and torso are getting stronger all the time.  He even got to lay on his tummy and practice using his arms to lift his head and upper body, which is something that would be developmentally appropriate for his age.  It's still hard for him to turn his head to the right (it was turned to the left for the 11 days he was on ECMO), but he's getting better all the time.  All in all, he did a stellar job, given that he's only really been conscious for about 21 days of his life.

I know that now that he's doing better many of you won't be checking the blog as regularly, so we wanted to let you know that at some point we plan to have a big party, probably a hog roast,  to celebrate Reuben's life and thank all of you for all of your help and support.  Of course you're all invited!  We just don't know yet when it will be -- we need to give Reuben's immune system time to get ready to meet a lot of people at once, and also for his lungs to heal more so that when he does get a cold it won't be devastating for him.  But there will definitely be a party, so watch for details.

Love,

Jonna, Eric, and Reuben

We should have known when Dr. Klein said "We might go to the canula by the end of the week," that what he meant was, "Let's do it tomorrow!"  I think he doesn't want to promise things he can't deliver, so he doesn't want to make any promises too fast.  Reuben is statting well, and the soft canula is definitely more comfortable for him than the hard tube in his nose with the long tubes extending from his body.  Now we can even pick him up without help from a nurse!  And it's easier to hold him and not worry that his tubes will jab him.  This afternoon, he and mom took a long nap together in the chair, and then he and dad sat down together right after that.  I'm sure he won't spend much time in bed now that he's so easy to move:).

We're not sure yet when we can put him to breast but it should be soon if he continues to tolerate the canula well.

Eric is with him tonight, so I'm going to go straight to bed to take advantage of my night off.

Love,

Jonna

In two of the photos Eric posted you can see the little marks Reuben has on his back that are called hemangiomas (sp?).  When they first turned him over after he was extubated on day of life 48, we saw that he had three little pressure sores on his back, so we started putting bacitracin on them every day.  The worst one at the top of his spine healed nicely, but these others, that seemed littler, just never went away.  

One day I said to the nurse, "Pressure sores are so strange -- that one that looked deep healed right away, but these
surface ones just don't go away."

She looked closer and told us they weren't pressure sores, they're something that may get bigger until he's about 2, 
and then they'll go away.  In any case, no amount of Bacitracin was ever going to fix them!  It's so nice that we're still learning new things about Reuben every day.  Our wonder and joy just don't diminish.  I suppose no parent's ever does.

Love,

Jonna