reuben’s adventure

I had to pull Reuben’s feeding tube yesterday because he’s been having increasing vomiting for the past week and it’s gotten to the point where he projectile vomits every time I put something down the tube.  We tried all variables and discovered that it is in fact the tube that was causing the problem — he never throws up when he nurses, but did throw up when I put plain breast milk down the tube, so we know it’s an issue with the tube itself rather than a developing allergy to the formula mix, etc.  The nurse came today to weigh him and will be back on Friday — if he can hold his own with nursing and the small amount of foods he’ll eat or take from a cup, great; if not, we’ll have to see what the docs recommend when we have his high risk follow-up on Monday.  I’m trying not to think about that too much and just hope he can do it himself.

Other than that, Reuben is doing great — he crawls all over the place and pulls himself to a standing position on the steps and is just his usual happy, cheery self.  He had a nice visit in Davenport and I’ll try to post some pictures from that in the next few days.

Love,

J, E, and R

And they always make me sweep for my supper!

But sometimes they let me outside!

Reuben decided to have three top teeth come in at once.  I guess that is good to get them done but it has made him a bit of a crank.  I guess I would be too with bones ripping through my gums but you would think he could take it a bit better!  

Last weekend we took Reuben out for the second time to a non-hospital visit.  It is amazing to realize a 10 month old has only been out of the house (except walks) 2 times when it wasn’t to go to the hospital.  We went to some friends in Iowa City for dinner.  Reuben handled himself very well - although I bet they are still cleaning up the floors.  He loved some white bean spread they made which was very, very messy and very strong tasting.  The only foods he seems willing to take are ones with very strong flavors so maybe baby food is just too bland for him.  Perhaps I should bring home some Indian take out.  

Oh and we always have had dogs and cats living together..I just wanted a catchy title!

Tonight we will work on gettting some current photos of the boy up so check back!

Eric 

Reuben has been invited to be a Children’s Hospital Champion.  This means that they could use his picture and story to help with promotion and fundraising efforts for the University.  We were honored to be asked and delighted that Reuben’s story might help Children’s Hospital raise money to help other sick little ones.  We try to donate to Children’s Hospital as generously as we can, but it doesn’t feel like very much in comparison to what they gave us — a healthy little boy.  We’re glad there’s another way to give back for everything we were given.

I know this blog is supposed to be about Reuben, but one other time I also wrote about Eric, and I feel compelled to do that again.  He is such a great husband and dad, and this weekend he worked on a project he’s been wanting to do for a long time.  Our old bathroom sink had separate faucets for hot and cold water, and Eric was really worried that as Reuben gets older and can wash his own hands, he’d burn himself.  So he replaced the sink with a faucet that has a single spigot so the hot and cold water will come out already mingled.  And while he was at Menard’s he remembered that I’d said I ran out of clothespins while I was hanging out the diapers, so he picked up some more.  I have to admit, he pays much more attention to me when I talk than I do to him!

I’m so lucky to have both my boys.

Jonna

Well, what the doctors and nurses actually say to Reuben these days is, “You look so good!”  But we think they mean that he looks marvelous.

Today Reuben had his nine month well baby checkup and Dr. Endres was just delighted with how he’s doing.  Reuben was his usual charming self — laughing, babbling, snuggling with mama and dada, flirting with the nurses and doctor, and doing his monkey-boy impression as he tried to dive face-first off the exam table.  There were no shots at the nine-month visit, and Reuben was glad for that.

One of his developmental changes is that last time Tai, the visiting nurse, was here to give him his Synagis shot, Reuben got VERY upset.  It used to be that after a shot or other medical procedure he would cry for a few seconds but then shake it off.  This time he seemed to remember what Tai had done.  He cried so sadly and hard after his shot that I had to walk around with him in my arms for a few minutes.  It took me a few turns around the room to realize that every time he could see Tai, he cried harder.  Finally I sat down with him in the rocking chair and he snuggled up against me and looked out the window.  He wouldn’t even look at Tai (she stays for about 20 minutes after giving him the shot to be sure he doesn’t have an allergic reaction to it.)  I thought perhaps he was settling down for his morning nap.  But as soon as he heard the door click closed when Tai left, Reuben sat up and looked around with his old bounce and wanted to get down on the floor and play.

Dr. Endres also referred Reuben for occupational therapy to try to help him get more enthused about eating.  They haven’t called to schedule it yet and we are getting very anxious!  We’re looking forward to it.

Reuben can now officially crawl - at least backwards — and he can move back and forth between crawl position and a seated position.  He also scoots around quite a bit on his behind.  We got the gate up in the kitchen and will soon have to put one at the top of the second floor stairs.  He keeps surprising me with the things he’s learning to do.  The other day I set him on the floor next to the laundry basket and turned my back — when I turned back, he had pulled the basket over and pulled out all the dirty clothes.  It’s so fun to see him learn to do things like that!  I wrote a while back that he had learned to take off his hat, but now he’s also learned to take off mama’s hat, and he thinks that’s just about the funniest thing anyone has ever thought to do.  

We would certainly never have wanted Reuben to be so sick, but his illness has had its blessings, too.  One of them is that we get to spend so much time with Reuben.  Since we can’t take him places, we just organize our lives so that we’re always here.  We’ve been so lucky and blessed that Cornell has been flexible with my schedule and work arrangements, and also that my mom is willing to give so much of her time (two days a week) to watch Reuben.  

I feel incredibly lucky that I get to spend most of my days with him.  I never imagined how much joy I would get from being a parent, and just from being around Reuben.  He is such a bright, cheerful soul and I think he passes some of that on to us.

Love,

Jonna, Eric, and Reuben

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

Reuben is 8 months old today, and he had his first outing for fun.  We took him to Dumont (about 2 hours away) to see his great-Grandma and Grandpa Freese (the original Reuben). We knew we would only take him on social visits to an immediate family member who was unable to travel, because the risk of exposing him to something is just too great. No matter how careful we try to be, there’s just more risk when we’re out and about. We stopped at a gas station so I could go to the bathroom and when I came back to the car, I touched the top of his head before I remembered to use the hand sanitizer — who knows how many customers had touched the bathroom and store door handles that morning, or how many were sick — so I put hand sanitizer on the top of his head, too. He thought that was pretty weird:).

We had a nice visit and both Reuben and grandparents seemed to enjoy themselves. Great-Aunt Marge stopped by for a few minutes to say hello while her grandchildren were at recital practice.

He’s just not a normal little kid, though, in some ways. If anything is strange to him, he just won’t eat. We fed him 4 ounces of enriched food before we left at 8:30, and then he refused to nurse again until he finally took a nap at 2. He wouldn’t nurse again until we got home around 7. That is just not enough food to keep him going on a regular basis, so I think one of the real benefits of us staying at home is that Reuben is comfortable and in a routine and sure to get enough to eat.

Speaking of which, I need to go hang more food for him — it’s a little after 9 and he’s asleep, but we need to catch up on those missed calories. I’ll ask Eric to post some photos of the visit tomorrow.

Love,

Jonna, Eric, and Reuben

Well, I got to sleep through the night for the first time in 8 months last night!  Reuben has been sleeping through the night since he was in the hospital, but I’ve been getting up to hang his tube feeding and pump, so I’m usually up for at least an hour.  But we were inspired by Reuben’s little ECMO buddy Alana, who’s been off her feeding tube completely for a couple of weeks.  The docs aren’t worried about Reuben being on the feeding tube, but we decided that if there’s a chance he could quit having to have that put down his throat, he might appreciate it, and he wasn’t getting any practice with the bottle by getting fed at night.  So we flipped his schedule around so we offer him a bottle every four hours during the day, then hang whatever he doesn’t eat (at the moment 3.9 ounces:), and pump.  Then in the night I can nurse him, and it’s WONDERFUL because I don’t even really have to wake up — I just bring him into bed with  me and go back to sleep.  And he seems to be able to eat in his sleep, too, so we’re all happy.  I feel so awake and alive –it’s amazing!  We’ll go  back to the other way if he doesn’t gain weight this way, but it’s a real treat right now!

Love,

Jonna, Eric, and Reuben