reuben’s adventure

I don’t like being at work, away from Reuben.  He can’t talk, crawl, or even hold is head up all that well but he is infinitely  facinating and fun to look at.  I was telling my boss about how I missed him.  How I found it really sad that I am basically only around for 1/8 of his day (since I get home at 5 and he goes to bed at 8.)  He said something like “yeah, but how much of that time is he awake?”  My boss is a great guy, but I don’t know that he gets it.  It does’t matter to me if Reuben is awake or asleep - I just love being with him.  

E 

Well, Eric went back to work today, so it was the first time Reuben and I were alone together for a whole day.  Everything went very well — we were lucky that Eric got to take three weeks off so we could really get comfortable with how to do everything.  I even re-taped Reuben’s cannula and feeding tube by myself, and Reuben hardly noticed .  The first day we came home from the hospital, Eric and I both worked on that task, and by the end of it all three of us were either screaming or in tears, so we’ve definitely made progress!

Tai, the visiting nurse, was here today and Reuben weighs 14 pounds, 13 ounces.  By the time she comes again on Thursday he may hit 15.  He is nursing really well, though we still have to give him three enriched feedings each day.  The trouble is that he would prefer to nurse and is becoming quite good at making his preference known.  The other night when it was time to hang his 5 o’clock feeding he threw an absolute fit, and we couldn’t comfort him at all until I let him nurse a bit.   I was able to slip the pacifier in after a few minutes, so his tummy wouldn’t get so full of plain breast milk there wasn’t room for the enriched food.  Tonight when we hung his feeding at five he kept shoving Eric’s finger into his mouth and then taking it out and making faces at it.

I keep wishing I could just boil some of the water off the breast milk I’ve pumped so that there would be more calories per unit of volume and use that instead of the formula, but none of the doctors have jumped on that idea.  Then again, they don’t have a deep freeze so full of breast milk that there’s no room left for food for anyone else in the family!  (I can donate some of what I pump later this winter, but I didn’t realize I needed to keep track of when I took Tylenol, etc. at the beginning so can’t donate any of that.)

Nana Higgins is coming tomorrow to keep me company and will stay with Reuben for a while in the evening so Eric and I can go out for our anniversary.  I can’t believe we’ve been married for nine years — especially since it feels like at least 8 of them have passed since Reuben was born! 

We posted some photos of the boy with his grandparents and greatgrandmother.  I think I might even ben in one.

They are under “Reuben at Home & with“  (apparently it cut off the full name)

We get to see Reuben’s weight a lot.  The visiting nurse weighs him twice a week and he gets weighed at every doctor’s appointment.  That seems to be the primary way they tell if he is thriving (that was the comment Dr. Akaragy made before we left - “We know Reuben will do well, but we want him to thrive!”)  This week he has gone up a 6oz between Monday and Thursday - which is 170 grams! (remember the hospital wants everything in metric.  That is roughly 42 grams a day.  At our last appointment they said that between 20 and 30 was great….I think they will cut back on his forumla feedings!

Reuben has been making non-crying vocalizations for a few weeks now, but in the past few days he has really started talking.  Grandma and Grandpa Freese were here over the weekend, and when Grandpa Freese read him a story Reuben just babbled back the entire time.  It was very cute.

Our friend Dan stopped by this morning; the last time he’d seen Reuben was when he baptised him the day he went on ECMO.  He was amazed at Reuben’s progress — we really are lucky that he’s turned into such a healthy boy.

We’ve been having fun the past few days playing around with the different kinds of cloth diapers the 1000 Friends board sent us as part of their baby present.  We figured this is one way we can save money as long as Reuben can’t go to day care.  So far they’re working well, and we especially like that most of the wraps/covers have pretty patterns since the boy is always too hot to wear any clothes — at least he has some form of bodily adornment:).

At the moment Reuben is asleep in his swing.  I put him there because the physical therapist said that back and forth movement is very good for him, but he’s fallen asleep in such an uncomfortable-looking position that I fear he’s going to need some physical therapy when he wakes up in order to be able to straighten out his neck again!  Grandma Freese also found us a ring sling at one of the consignment shops in California, and Reuben is slowly getting used to that.  We need to find one made of tissue paper or something, though, so the boy doesn’t get too hot — he definitely has Eric’s metabolism.  I don’t know what we’re going to do this winter — already he flinches sometimes when I touch him with my chilly hands.

Love,

Jonna, Eric, and Reuben

turning into a healthy baby.  That was one of the comments by one of Reuben’s doctors during his first follow up visit today.  I was shocked at how hard I found it/find it to think of him as a normal baby.  He is “The Boy” - intubated, canulated, ECMOed, etc., etc.  Every time we get used to some set of rules about him, the rules change.

Reuben had an excellent follow-up (in case that wasn’t clear)!  He is gaining weight wonderfully.  In fact, we are even going to cut down a bit on some of his feedings.  He hasn’t been to interested in breast feeding the last few days and they said it was probably because babies were smarter than adults - he wasn’t eating becuase he didn’t need to eat.  So we are dropping one of his night time feedings to see if that will get him more interested in breast feeding during the day. 

They also did a test to see how long he can go with only room level oxygen and he lasted 10 minutes!  That doesn’t sound like much, but when he left the hospital 8 days ago he onlyh lasted 3 minutes!  (lasting means until his blood oxygen level drops to 88% by the way)  We were pretty amazed at how much he had improved.  He still needs his extra oxygen but it is clear that the new lung tissue is growing!

All in all he had a wonderful checkup and they were all very pleased with Reuben’s progress.  I think what we have to get used to now is that he is more like a normal baby than a sick one.  His lungs are still damaged, but it is more like a broken bone healing rather than an acute problem.  Like a mending bone his lungs will get better, we just have to give him time.

One thing they did remind us of a few times was that getting sick would be very, very bad for him.   We need to make sure that we both stay healthy and that we keep his from as many germs as possible.  For us and all visitors that means lots of hand washing and sanitizing.  It means no trips with him to the mall or the grocery store.  And perhaps biggest of all no visits from children going to daycare.  Basically Dr. Klien said daycares are just breeding grounds for germs and that kids really don’t know to be careful enough to let them around Reuben.  Kids often don’t know when they are sick, and they tend to touch everything.  It is tough becuase we want Reuben to meet his cousins, and our friends kids but the doctors said the risk was just too big.  “Next summer, he can play with his cousins” was Dr. Klien’s comment.  So for the next few months our house is a “child free zone” (except when I am feeling whiny. )

I wonder what his next rule change will be!

Eric 

Reuben definitely likes going for walks — on the first one he fell asleep at the end of the driveway, but on the second he stayed awake and looked around a lot.  We discovered it’s easier to go in the evening so we don’t have to worry so much about protecting him from the sun.  We seem to be settling into a routine of going for a walk in the mornings, though.  He does enjoy them, and we’re getting more comfortable switching back and forth between the oxygen tanks.

Reuben seems to be meeting all his developmental milestones, which is great — he’s reaching for things to grasp, follows people around the room with his eyes, etc.  He’s not quite rolling over yet, but he can get halfway there.  His favorite sleep position is to sleep with his top half on his right side and his hips flat on the bed — it doesn’t look to comfortable but he wiggles around until he gets there so it seems like it’s purposeful.  He’s making cooing and talking sounds that are very cute, too.  We’re just so pleased because we were prepared for him to have some developmental delays.  

He’s doing well with his neck-strengthening exercises, too, and we’ve even convinced him to do some tummy time occasionally, as long as he’s laying someone’s chest.

Grandma and Grandpa Freese will be arriving from California at the end of the week and we’re looking forward to their visit — we’re trying to learn how to actually get any housecleaning done while taking care of Reuben:).

Love,

Jonna, Eric, and Reuben 

Reuben really does seem to be settling in well at home.  He still sleeps through the night, though he doesn’t nap much during the day except small cat naps here and there.  He does usually take a longer nap in mid-afternoon, but only if Eric sits down to hold him.  It’s nice for them to have some boy time together.

We had quite a time with the tape holding in his cannula and NG tube the first day, and by the time the visiting nurse arrived today we had quite a patch job going on his right cheek - there was Tegaderm everywhere from his nose to his ear and his chin to his eye, and two layers of it in some places.  But his cannula was staying in!  The NG tube managed to slide out right through the tape twice yesterday — once first thing in the morning.  Then when I got home from walking Annabelle in the evening, Eric was sitting on the couch laughing.  When I asked what was going on, he just nodded at the tube laying on the couch next to him.  I got it down ok both times, though of course Reuben hates it.

Other than that, he seems to be doing normal baby things, which is wonderful.  Hopefully soon we’ll settle into a routine and getting accustomed to transporting him with all of his cords and attachments.  We haven’t gone for a walk yet, either — partly it’s been too hot, and partly I don’t think either of us is quite comfortable and brave enough yet to tackle switching back to the portable O2 tanks.

Regarding the “last hospital day” pictures, some of them are self-explanatory.  The ones with the doctors are of Reuben’s last day of rounds, and then a picture of all of us with Dr. Accaragui, who was also Reuben’s doctor part of the time he was on ECMO.  Nancy, the resident, is kneeling in front of us; she was the resident on duty in Bay 1 when Reuben was admitted and it was her dream to discharge him in Bay 2.  We’ll try to post some more pictures soon.

Love,

Jonna, Eric, and Reuben 

Reuben is getting into the swing of breast feeding…at least recreationally.  He will latch on then either pull off and act annoyed, or fall asleep.  Neither of which really gets him a lot of food.  Despite that he is actually doing very well at breast feeding.  We have to check his feeding tube placement a lot so we are constantly pulling back his stomach contents and he always has a good amount of breast milk in his tummy.  

Of course he gets 500mL of breast milk mixed with formula so he is getting a very healthy amount of calories but it brings a special bond with his mom to breast feed.  It is such a special bond that Jonna can barely find time to eat a meal! Everytime she sits down to do something he starts rooting around asking for a bit of food.  I think that is normal and everything he does which is normal is a blessing!

E 

I think we have taped Reuben’s canula 5 or 6 times already.  Somehow I don’t think babies were meant to have things stuck to their nose and taped to their faces!   This morning his feeding tube just plopped out for no reason which only created a bit of panic.