reuben's adventure

Reuben is having another good day.  They haven't been able to wean any of his oxygen, so he's still at 75% -- but they also haven't had to increase it, which is good.  He had Lasix (sp?) this morning, which is a diuretic and should help him get rid of some of the fluid he's retaining.  And he's still tolerating the suctioning well.  It looks like his infection is taken care of, because nothing is growing in the cultures.

The nurses keep reassuring us that it's a long process, but that once his lungs heal he'll get better very quickly and surprise us.  We can't wait!  We're very ready to hold him and take him home with us.

Tomorrow we'll have a new team of doctors and residents, who will be on for the next two weeks.  It's a little nerve-wracking somehow.  We'd just gotten used to Dr. Klein and all the others, so even though I know the new team will be just as experienced, it's a little hard to deal with a change.

We've been so overwhelmed by so many people's generosity -- I don't know how we'll ever eat all the food people have been bringing us, and all of it is delicious.  It's so great to just get home in the evening, open the fridge, and pull out some nutritious meal that I didn't have to think about preparing.

Love,

Eric, Jonna, and Reuben

Reuben is having another good day, thank God.  He was stable through the night and has been tolerating the suctioning well, which is good because it helps to be able to get out some of the mucus and some of the meconium that remains in his lungs.  He's down to 75% on his oxygen and they may wean him as far as 65% today, depending on how he does.  It appears that whatever infection he had is being knocked out by the new antibiotic cycle.  They're also backing off on his chlorhydrate, which means he'll be allowed to breathe over the ventilator and move around a bit again, he's just not supposed to "dance around" according to Dr. Klein.  They're backing off a bit on the Viagra, too, which should help with his urine output -- and, I suppose, cut down on the swelling.  They warned us he would gain quite a bit of fluid weight and it's starting to happen.  He now looks like an actress who went way overboard on the lip job.

Eric went back to work today and I'm staying here at the hospital with Reuben.  I can pump in his room, which is wonderful because I seem to get more milk that way.  My milk supply is right where it should be, so when Reuben wakes up I should have plenty of milk to feed him.

I think the sleep deprivation is catching up to us a bit, though -- last night at 11:30 Eric and I both woke up convinced that we needed to pump, even though we weren't supposed to do it until 1:00.  Once we realized it wasn't time yet, it took Eric a minute to convince me we were still in bed and hadn't started yet -- I kept saying, "we have to stop pumping now!"

Thank you for all your thoughts and prayers.

Love,

Eric, Jonna, and Reuben

We just can't say enough good things about all the wonderful people who are helping Reuben through this time.  He has fabulous nurses -- Myrna, Lois, Diane, Kim, and all the others we haven't met or whose names we've forgotten.  They look after him constantly.  Plus they're endlessly patient with our phone calls and questions about his condition.

Dr. Klein, Dr. Foster, and Dr. Tsai are just wonderful -- last night someone changed Reuben's anitibiotic dosage and schedule without Dr. Klein's knowledge and he was "annoyed," as he said this morning at rounds.  Let's just say I'm glad he's never been "annoyed" with me.

And of course, my family doctor, Jill Endres, who was with me the whole last six hours of labor and for several hours afterwards.  She was incredible and really helped me believe that what happened wasn't my fault.  Amy Lindaman, the family practice resident, was also with us throughout the last part of the labor and helped with the delivery.  Mary, the labor nurse, is the one who realized that the hearbeat she was getting at the end was mine and not Reuben's, even though it was really unusual for a laboring woman to have a hearbeat as fast as a baby's.  Last but not least, we couldn't have done it without Cammy, our doula, whom Eric wrote about a few days ago.

We are so grateful to all of them.

 

I know they said there would be good days and bad with Reuben's condition but is still shocks us when he has a rough time.  Today has been good but I think we are still worried about the setbacks from yesterday.   It seems like everytime we get used to something then a new situation comes up!

They have added regular suctioning of the lungs to Reuben's day.  It makes a lot of sense becuase he can't cough out anything which builds up in his chest but we had gotten all used to the precautions to limit his stress!  

I think the lesson is that we can't get used to much about Reuben's condtion, it is a flowing, changing, situation and what works one day may have to be changed the next.  

Of course I also think that is what causes gray hair!   

If you look over under "albums" on the left you can see some photos of Reuben and all of his equipment.  As to the last photo and the abject terror on my face, I wasn't frightened by my first sight of my son's face (on his fifth day of life), but by the fact that the nurse wanted to take his photo when he didn't have his mask on.  I was so afraid the flash would bother him!  That day it didn't, although we wouldn't try this today.

He seems to have been stable most of the day, partly because he's gone to a regular sedation schedule on his heavy medication instead of only when the nurses think he needs it.  That's to allow him to rest and recover from yetserday.  We haven't checked yet on the results of his four o'clock blood gas readings or afternoon x-ray.  Hopefully it will be uneventful.

I hope all of you are enjoying the gorgeous weather and having a good holiday weekend.

Much love,

Eric, Jonna, and Reuben 

Well, they warned us that there would be many ups and downs in this process and yesterday and today we've seen some big ones.  While we were moving home, Reuben's X-Ray showed that one of his lungs was not inflating properly, so he needed to be suctioned, which is very hard on him.  They did get out a lot of mucus and even some specks of meconium, which is good for him, but it's a tough balance because the suctioning is very stressful.

After that he needed more oxygen and nitric, and then his evening blood test showed that he has an infection, so he's been put on a broader range of antibiotics.  He also had to be suctioned again.  He's very heavily sedated now.

Even though they warned us this would likely happen, it's still very hard.  Many thanks to all of you for all your thoughts and prayers.

 

Reuben is having a great day.  His O2 levels are still up in the 90s even though he's only getting 60% oxygen and they've turned down his nitrogen as well.  He's breathing quite a bit over the ventilator but the doctor is comfortable letting him do that for a while since he was knocked out most of the night and well rested.

Apparently he likes his milk -- the nurse said he was waving his arms and sucking on the ventilator tube just before his last feeding but settled down after he got it.  I've got a lot of milk, which is a wonderful blessing.

Uncle Darin and Aunt Sabrina should be here soon to meet Reuben and then Eric and I are going to move home this afternoon.  I'm not looking forward to going home without him -- I've never been in our house without Reuben with me.  But I'm sure it will all work out fine.

Love to all of you and thank you for your continued thoughts and prayers.

Reuben is having a good day -- his oxygen levels have been turned down and he's responding by breathing quite a bit.  We'll see if Doctor Klein continues to let him do that after rounds or not.  Reuben is working on getting better so he can go fishing with Grandpa Freese soon, and Grandpa Freese is working on getting better by having a chemo treatment today, so we're all thinking of him.  And Aunt Laura just went to the hospital so maybe cousin Amy will be born today.  Hooray!  We can't wait.

When we tell people we had a doula with us for the birth we tend to get some odd looks because I don't think anyone knows what the heck we are talking about.  One of my aunts described her as our "ra-ra" - i.e. someone there to cheer us on.   While that is true it also just doesn't describe the full range of help our doula (Cammy) provided.

Basically a doula is there to be someone who knows a lot about the birth process, can run errands, provide support, help us plan for the kind of birth we want, and stay calm.  That last one is important becuase it is impossible for a family going through labor to stay calm.  It is just too exciting, worring, overwhelming, and new. 

Before the birth Cammy helped up develop a birth plan describing how we wanted the birth to go, what we wanted in terms of medical intervention, when we wanted to hold the baby, what we wanted to do about circumcision, medicine, etc.  (even very uncomfortable things like what we wanted to do in case the baby didn't live)  I trust our doctor to the ends of the earth but it is still important to outline what we wanted.  We provided that birth plan to our doctor and talked over all the parts of it with her.  This really put us all on the same page regarding what we wanted. 

When labor started Cammy came over and helped us time the contractions, pack up the car, remember to eat (which was really, really important becuase it ended up being over 20 hours before we saw another meal) and generally make sure we were ready.  She then followed us down to the hospital and then stayed with us through the whole delivery!

Durning the labor she helped massage Jonna, walked with her, encouraged us, stood up to nurses and doctors for us, got our bags, talked to Jonna's parents, and did anything else we asked.  It was great.   For long periods of time it was just the 3 of us.  One of us (me or Cammy - Jonna didn't do much running round) could run for water, or more towels, etc. and Jonna never had to be alone. 

Basically, as far as I can remember, Cammy was a saint!  It made the whole experience much more personal, wonderful and calmer.  I cannot imagine how we could have done those 18 hours without her strength. 

Eric and I just want to thank all of you for all of the love and support you've shown us in the past week (has it really only been a week??? -- Last Friday at this time we were having a non-stress test and determining whether we needed to induce or could let Reuben take a little more time to decide to get born.)

I know there are many of you who have left phone and email messages that have gone unreturned, and I promise that we so appreciate your thoughts and love, even if you haven't heard from us directly.