reuben’s adventure

We just wanted to let you know that we are all doing well after the ice storm.  Our power went out about seven o’clock last night, just as we were about to get Reuben ready for bed, so we just carried on as usual.  We had already thought through everything Reuben needs and realized that we don’t need electricity for anything.  The oxygen runs automatically from the high pressure in the cannisters through the cannula.  We could heat his enriched food if we needed to with the hot water from the faucet (especially since we keep the hot water heater set higher than we should so I can take what Eric calls inhumanly hot showers).  But we had already decided that instead of feeding him enriched food through the tube, we would just let him nurse.   That took care of both his need for warm food and my need for him to eat, since the one thing we do need electricity for is my pump.  We figured he could go a day or so on straight breast milk, and we could reevaluate if the outage went on longer than that.

Reuben thought it was a bit strange to put his pj’s on in the dark, but he seemed to enjoy the adventure.  The furnace is gas, but the blower is electric, so we didn’t know how quickly the house would cool down. It was really pretty warm outside, so we hoped it wouldn’t get much cooler than 40 in the house, and we take Reuben out for walks down to that temperature.  As long as we stayed together in bed under the down comforter, we figured he couldn’t get too cold, so  we bundled Reuben up and put him between us in the bed.  He went straight into a sound sleep, and then Eric played on the NIntendo DS (with batteries) while I read for a while by flashlight.  I think we were all asleep by eight.  

I checked the temperature in the house a couple of times in the night, and by 2 AM it was still 60 degrees.  As my parents pointed out, that’s still warmer than we used to set the thermostat before Reuben came along!  (In fact, we had a funny conversation about this with the nurses while Reuben was in the hospital.  They gave us a big lecture about how everyone thinks they need to crank up the heat for babies, but really they need cool temperatures, especially to sleep.  They told us we should keep the temperature between 60 and 65 at night for him.  When I told them that our thermostat was set to 62 during the day and 58 at night, the nurse just stared at me and then said, “well, okay, you guys might need to crank up the thermostat.”:)). 

I had turned the kitchen and basement faucets, which are on outside walls, to trickle water, but I don’t think that precaution was necessary.  The power came back on sometime between two and three.

We hope all of you are well and safe and have your power back on soon.

Love,

Jonna, Eric, and Reuben

We had another High Risk follow-up Monday. Again it was a wonderful trip full of them saying how great he was doing. He was checked out by Dr. Klein, Dr. Lepp, the physical therapist, the speech and swallow therapist, and the child psychologist. They each gave Reuben a “10″ He seems to be right where they want him to be.

It is good to get their perspective and stories because sometimes we worry. We started on the food program Scott (the suck and swallow specialist) gave us a few weeks ago and Reuben has seemed to fall back rather than moving forward with eating. The first couple weeks he would take a bite or two before turning up his nose, however for the last week or two he has just clamped his mouth shut at every meal. This worried us, as you might expect, so it was refreshing to hear them say this was not uncommon and that we would make it through this eventually. The appointment ended up taking 3 hours with all the different people but we felt reassured afterwards.

Reuben held up really well despite missing a nap, seeing tons of strange people, and generally being in strange surroundings all day. He would cry and fuss but after a few minutes laugh and smile at everyone. I could probably learn something from his attitude.

On the way home we decided we hated our new car seat and would return it. I don’t know if this is normal but the straps were of different lengths which just seemed wrong to me. With uneven straps the right side could be snug with the left being loose. So the next day that went back. On the plus side since Reuben leaves the house so infrequently we were not too worried about not having a seat (as Jonna jokes darkly - if he leaves the house before his next doctor’s appointment it will be in an ambulance and they will secure him.) We tested all the ones at Target trying to find one which was easy to use and eventually decided on a Britax one. Luckily we found it on-line for cheaper than Target was selling it - however it still costs more than our car (well not really but close)

In all reality we have been spoiled with the generosity of friends and family. We have actually bought very, very little for Reuben. We have gotten his first car seat, his high chair, his bath tub, his co-sleeper, tons of clothes, toys, bouncy chairs, his crib, and many other items from people. I hope we have thank you all but if we missed you it was not because we don’t deeply appreciate your kindness but because we are disorganized flakes (which is excusable now that we have a baby around!) 

Reuben’s next trip should be to his “Well Baby” visit….I still love the irony. But he would still love to see any of you who would like to come by the house!

Reuben has made some fun progress in recent weeks.  He has learned to take off his hat, which he does with great glee many times a day.  This is a problem since he has no hair and needs to wear his stocking hat in the house to keep warm, just like his mama.  He loves to throw toys to the floor so that we will pick them up, and enjoys listening to see what sound they make when they hit the floor.  He can easily sit up for long stretches of time, but he often leans forward onto his arms, gets his legs behind him, and bounces his butt forward and back, like he’s revving up to take off.  He really wants to go somewhere but just hasn’t quite figured out how to coordinate everything.  He also loves to be bounced up and down in our arms — I think he would do that pretty much all day if we would cooperate.

The one thing he won’t do is eat.  Using a procedure the speech therapist who specializes in feeding issues recommended, he had gotten up to regularly eating 1-4 bites a day of sweet potatoes, pears, or other first foods.  He was also enjoying his sippy cup.  But for the past two weeks he won’t take a single bite or drink by mouth, except to nurse.  Needless to say we are very glad he has a follow-up appointment at the high risk clinic on Monday, where we will see the speech therapist, Scott, and the physical therapist, Kathy.  We’re assuming that Kathy’s evaluation will be great, since he seems to be doing well in his physical development, and we’re hoping Scott has some suggestions for us.  We’re going to push for him to have occupational therapy services at home to help with his eating.

Hope you’re all staying warm!  Reuben looks adorable in the little wool leggings Eric got him that go up to his armpits!

Love,

Jonna, Eric, and Reuben