Tuesday, March 31, 2009

look ma, no cannula

seriously--this is the boy who had a ventilator breathing for him 4 days ago and 50% of his bowel removed 2 weeks ago.  what a rockstar. 
(this was after the oral-gastric tube was pulled, but before the n-g tube was placed--also before I cleaned up his chin--so I got this rare tube-less picture)

a few minutes later...
Ryan's been changed to elecare---a fancy schmancy formula and he is up to 3 mL/hr and doing well.  I finally got to kangaroo him today--exactly 2 weeks after the last time I held him (the day before he got so sick).  There were too many days in the past 2 weeks when I truly thought I'd never get the opportunity to hold him again--I'm so grateful to see him acting like he used to--quietly alert, content, sucking his hands or his pacifier, just being a sweetheart.  The neonatal doctors have signed off on him and now he is just being taken care of by the pediatric surgeons who are monitoring his digestion.
And of course Nora, who, by the way, was also on a ventilator 4 days ago is now healing nicely and just practicing being cute: 
Thanks, Elizabeth, for the sweet hats--they fit beautifully.

Monday, March 30, 2009


Ryan: tolerated his food well yesterday, so they increased it to 2 mL/hr today, but are concerned it's going thru him too quickly, so they will probably change some things tomorrow.  he is back to the cannula today and doing well.  I gave him a bath today, but couldn't kangaroo with him b/c the bath was enough excitement for the day--hopefully tomorrow.  best news--follow-up brain ultrasound today was normal! (NEC and the infection increased his chances of PVL, so they wanted to do another ultrasound about 2 weeks after he was diagnosed with NEC)--still no PVL, thankfully.  Here's our sweet boy:

Nora: now off the cannula.  was very alert today--posed for a few pictures since she was sporting some new clothes.  First, though, this is how I found her sleeping this morning--she's a bit of a diva, huh?

Caitlin: just to round out the crew...

Sunday, March 29, 2009


I got to give Nora a bath today for the first time (not her first bath, just my first time bathing her).  She is doing well--no changes, but she can't wait to get to eating again--one more week until the treatment course is over, then no more antibiotics and she can get a full belly again.  She feels so much bigger--she's 3 lbs 14 ounces right now.

Ryan looks good too.  He's back on the CPAP, but doing better on it than he was on the cannula yesterday.  He started breastmilk again--same as before 1 mL per hour.   I pray he tolerates it this time.  He was doing well when we left--no leftover milk in his belly and he was pooping so much that he now has a itty bitty baby sized ostomy bag on his belly.  we should be able to hold him and/or kangaroo with him tomorrow. He's 4 lbs 1 ounce right now.

Ryan may be dealing with something called short bowel syndrome--that's the expectation from the surgeons since he lost half of his intestines due to the infection.  They expect he will need partial IV nutrition to maintain his nutritional needs.   I pray he does much much better than expected and surprises everyone.  Basically, with the amount of small intestine that he has remaining, it's difficult to say how he'll do--some kids do great and their intestines somehow adapt--others don't do as well.  With his extent of loss, he will be slow to transition from the IV nutrition to oral over months and months--but the key is getting him on as much nutrition via his gut as possible (either eating by mouth or via a tube into his stomach) b/c longterm IV nutrition is not good for the liver--and the sooner they start putting food into the gut, the more likely the intestines are to adapt.  John and I have been reading up on this quite a bit--some of it is hard to read and some of it gives us hope.

Saturday, March 28, 2009


our first boring day in a while, thank God. no changes so far, really.  i got to kangaroo with Nora for an hour or so today--much more enjoyable with her off the ventilator.  i hope i can hold Ryan soon.  Ryan is just over 4 pounds.  Nora is just under 4 pounds.

Friday, March 27, 2009

True Story

when we arrived today, Nora's medical team said that she'd be extubated later this afternoon b/c she didn't need the ventilator anymore--yay.  We talked to the surgical team and they weren't convinced that Ryan was ready to be off the ventilator--I was OK with that, he's been thru enough, let's wait till he's clearly ready.   Brown, a friend from church, came and prayed for the babies this morning.
At lunchtime, I said to John that I thought it'd be cool if they could both come off their ventilators at the same time.  John said "well, that's not going to happen." When we got back from lunch, Nora was again complaining about being on the ventilator--her nurse called the docs to tell them she was ready and they said it would be done at 2pm.  So, it's 2pm and all the docs and respiratory therapist and a few nurses gather around Nora, getting ready to pull her vent tube to extubate her.  All of a sudden, Ryan's alarms start going off--his oxygen sats are down to 40%.  i'm freaking out.  his nurse starts to assess him to find out why he's not getting enough oxygen suddenly---then I hear "he's extubated!"  The docs leave Nora before she can be extubated and go to Ryan.  Turns out, he literally slimed (or is it slimmed?  what's the past tense of the verb "to slime?") the tube out of his mouth--the tape holding it in place got too loose from his mouth gunk and it just came right out.  They were paging the surgery staff to find out what to do and one of the neonatologists suggested they just see what he does without the ventilator since he was breathing on his own at that point.  So, they put a cannula on him and get him settled in and see what he does.  First he starts having a bit of trouble and one of the surgeons says that he won't be able to hold his own on the cannula.  Another surgeon says that he might be able to do it-he'll let us know within the first hour or so, she says.

Then, they turn to Nora, get her extubated at about 2:30 this afternoon--it takes her a while to be happy about it, but she finally is.
We left at 4ish-Ryan's blood gas was fine after being off the vent for an hour. both were still doing OK on their cannulas.  I called at 6pm and Nora was breathing room air, just using the cannula for air flow into her nose.  Ryan was doing fine on minimal oxygen and was comfortable still breathing on the cannula.  I called at 11pm and there haven't been any changes still.

So, that's the story.  Even though they've been separated for 5 weeks, they are most certainly twins.  what are the odds that Ryan's tube would literally fall out the exact moment they were taking Nora's out?  anyway, we'll see how Ryan does--it's clear that he may tucker out and need either the CPAP or the ventilator again.

Other news is that they stopped Ryan's feeds at about 1AM in the morning since he spit up a bit--they'll retry milk in a few days and see how he does.  if he still has trouble, they might try a pre-digested formula to see if he'll do better on that.

Thursday, March 26, 2009


Ryan is eating breastmilk and so far so good.  he is getting very tiny amounts--1 ml per hour via a pump.  He's so funny when he opens his eyes and looks around--he looks so suspicious of everything.  i guess i would be too if I'd been through what he's been through.  He has no other IVs other than his central line, which will stay in very long-term.  so he is looking pretty good.  he's comfortable and they are weaning him off his agitation and pain meds over the next few days. once he's off the ventilator, we can hold him-- i can't wait. oh, and he stopped needing his diuretics as well.

Nora, on the other hand--very uncomfortable and she is making it clear that she HATES that et tube in her mouth for the ventilator.  Now, today, they've added another antibiotic for pneumonia--she was on it two days ago and it was stopped, but now they think that she has pneumonia again--so we've got her being treated for a bloodstream infection, staph, with vancomycin, presumptive NEC with vancomycin and gentamicin and pneumonia with gentamicin and zosyn. ugh.  I did get to kangaroo with her today and during the 90 minutes I had  her, her oxygen requirements went down from 30% to 23% (they were 50% yesterday)--until she started wretching and gagging on the et tube--it all ended very abruptly and horribly and she was pretty pissed about it, but she ended up being OK.  I don't know if i'll be able to do that again until she is off the ventilator.  I'm just going to be praying that she can get off the vent really soon.  she is so so uncomfortable on it.  on a positive note--her oxygen requirements and ventilator settings are lower today than they were yesterday--her color is good again (she got more blood overnight)--and she is back to complaining a lot about her discomfort, so that is a good sign as far as I am concerned.

Wednesday, March 25, 2009


(Sadie--if you are reading--i added a comment to your comment on the post below--thanks for your questions)
Ryan: still better.  started back on caffeine so that he might do better on his breathing. he pooped, which is good--if he does have some more bowel movements, he will be fed a tiny tiny bit to see how he tolerates it--this should happen sometime within the next few days. otherwise, we were told he'll be in the hospital for 3-4 months to tweak his feeds.  he'll be on long-term IV nutrition, at least to provide some of his total nutritional requirements.

Nora: i don't know.  they don't know.  now today, they're back to treating her for presumptive NEC. and a blood infection, that might be a contaminant and not a real bug causing her to be sick? and a pneumonia? maybe?  basically, they don't know.   she looked worse to us today again.  she's getting puffy from being septic, like Ryan, but not as bad as he was.  she's on an awful lot of oxygen.  the medical team says she looks better to them today.  i don't really agree.

Tuesday, March 24, 2009


Ryan is doing good things.  He is continuing to pick up his breathing and they are backing off on his diuretics b/c he's nearly back to his usual weight/size.  They are starting to give him opportunities without the ventilator assistance a couple times a day--he totally flunked his trial this morning.  he's a ways off from getting the ventilator tube out of his mouth, but he's moving in that direction.  they are starting to hear his gut wake up a little bit and gurgle, so that's a good sign as well.  
His eye exam yesterday was OK, not great.  some mild ROP--but the ophthalmologist says it's the type that often resolves on it's own--but he'll need follow-up, as do all preemies.  he advised me not to worry about it.  i won't.  i have too many other things to worry about.

Nora opened her eyes for me today finally.  She looks better, color-wise and was acting a bit more feisty today--kicking and showing she wasn't happy with how she was positioned.  She's still on the ventilator and is still acting sick, but overall i think better.  She does have an infection.  her blood cultures were positive for probably staph. but she's on the right antibiotics.  They aren't sure where the infection is coming from---lungs and gut are suspects. she is back to not getting her feeds in case the gut is the source of the infection. Her eye exam showed no evidence of ROP, but again, she'll still be following up with the eye doctor b/c she's a preemie.

Monday, March 23, 2009


PM: first, we are weaning our blogging down to once per day--just a heads up.  this is the last post for today.  no change in Ryan--he's doing pretty well.  when he is awake he is taking additional breaths beyond what the ventilator is doing so that is good.  Nora deteriorated pretty quickly today and has been put back on the ventilator.  she has aspiration pneumonia, it seems.  she hasn't opened her eyes or responded to me at all today, which is not like her at all.  she is getting a transfusion as i type this, which should help her out a bit.  here's hoping she perks up quickly.  if  we weren't living this nightmare, i would think we were making this up.

AM: when we came in this morning, Nora looked awful. she was having lots of episodes of apnea (not breathing) and was very pale and lethargic. They had to put her back on the CPAP machine to help her breathe and she is not better. Now, she's even more floppy and not responding to much of anything--if she doesn't improve, she will be back on the ventilator. They are doing a workup on her to find out if she's infected--another spinal tap, another set of blood cultures, another urine culture. please pray for her.
Ryan is still looking better-his weight is down and they have been able to go down on his ventilator settings even more.

Sunday, March 22, 2009


We spent the day at Ryan's bedside--I am constantly prodding his nurse and talking with her about every little thing.  she's been so very gracious.  We didn't speak with the surgeons today at all, really, so all of the following is based on the nurses observation and also from what she told us that the surgeons told her.
Ryan's peeing a lot still--this is very good for a few reasons--1- it means he is still getting good blood flow to his kidneys and -2-he is peeing off some of the excess fluid (his weight was up again today from yesterday).  today he peed off more fluid than he got put into him via his ivs, so hopefully tomorrow, his weight will be down.  He has been off the dopamine, which was helping him keep his blood pressure up, for the past 24 hours--so, it's good that he's holding his blood pressure up without the meds.  they were also able to go down on his ventilator settings, which is great.  he's awake today, finally.  His eyes are open and he is responding to our voices.
Lastly, according to the nurse, the surgeons are now thinking that this piece of possibly-dead bowel may slough off itself like a scab instead of needing further surgery--we'll talk to the surgeons some more about this tomorrow.  So, there are a few answered prayers here: lower ventilator settings and maybe the dead bowel issue as well.   They really need to get the fluid off him, but not too fast, so let's pray for that as well as continued recovery in the other areas I've mentioned.  
Nora's doing fine as far as I can tell.  She is resting most of the day.  She is still nursing well once per day and tolerating her feeds that they restarted yesterday.  She still hasn't pooped and I really need her to have a healthy poop so that I can be reassured that she isn't dealing with NEC.  She has an eye exam tomorrow to check for retinopathy of prematurity.

Saturday, March 21, 2009


8pm: we met with one of the surgeons later in the afternoon.  we came away from that discussion feeling very deflated about Ryan's progress. very deflated.  they are not happy with how high his ventilator requirements are right now.   also, one of the parts of his large intestine that's still in looks dead--they don't know if it is for sure, but they're keeping an eye on it (it's the part that's sticking out of his belly right now)--he doesn't exactly have extra intestine right now and they are really hesitant to go in and resect even more.  They are trying to get the fluid off of him slowly--it's part of the inflammation and infection he is fighting...but the fluid is in his lungs, hopefully getting some of it off will help with his ventilator settings--so please pray he is strong and they can ease off on the ventilator a bit.  Also pray that he doesn't have any more dead bowel in there--we really hoped that they'd gotten it all out originally though we were warned that he may need multiple surgeries.  we really do not want him to have to endure more of this. he's been thru too much already.

1PM: Ryan looks better today to me. He is less puffy. It's looking more like the baby I knew a few days ago. He is moving more--his arms and legs and he's sucking the tubes in his mouth a bit, though he doesn't seem in pain--he hasn't opened his eyes yet and they don't really want him to--they really are keeping him pretty sedated so that he can rest and heal. They showed us his abdomen today where the surgical site is--it doesn't look as bad as I thought. I haven't talked to the surgical team yet today though.
We finally have some good news: they have ruled out NEC for Nora! Turns out that the area on the xray that they were concerned about from yesterday was probably stool--you'd think that in this day and age, they could discern healthy stool from deadly bacterial infection, but whatever. they are slowly restarting her milk today and I will try to nurse her once today. It's hard to celebrate this though, b/c Ryan was looking just fine on Tuesday night and early Wed morning before this all happened so suddenly, so it doesn't reassure me very much when they say she looks fine. I hope she starts pooping some healthy-looking poops, then I will start to let my guard down about her some.

8AM: I spoke to the nurses a few times overnight. They finally were able to get a PICC line in Ryan, so now they can draw his blood tests off his central line instead of poking him 100 times a day--this was the 4th attempt at that PICC line yesterday, so I'm glad that's over. The nurse said he needed more blood products overnight. He's still peeing, so that's good. His heartrate is down to a desirable level in the 160s -- it was over 200 the 24 hours after his surgery--so that is good.
I still don't have any new info on Nora. She's had 3 xrays since 3pm yesterday and I don't know the findings on any of them--we're not used to being left without info b/c at the other hospital, information was passed on to us very quickly, we had much more interaction with the lead physicians and it just seemed like communication was better. I know here at the U, there are more people and resources, but it's just a hard adjustment to make for us as parents. We are trying to get there early today and speak with the team when they are rounding. she was resting comfortably, still breathing without any help, when i called ths morning.

Friday, March 20, 2009


2PM: They are one month old today. Here are the updates.
Nora: still breathing independently. Head ultrasound today was unremarkable--no PVL. we are so so glad. belly less full, which is good, but abdominal xray shows an "area concerning for NEC." (NEC = necrotizing enterocolitis, what Ryan has)--this is a new development and exactly what I've been fearing the most. They are continuing to hold her feeds and give her broad-spectrum antibiotics. Basically, they're treating her like she has NEC.
Ryan: is still fighting. he's starting to move his legs and toes some--I pray he isn't feeling pain associated with all of this (I think that's my biggest prayer right now, honestly, I don't want him hurting). Head ultrasound today showed no bleed and no PVL. He is still on lots of support to keep his blood pressure up. He's clotted off a few of the IV lines they had and they are having a hard time getting the IV access they need to get all his meds in him and get all his labs that he needs drawn. he got a few transfusions yesterday and overnight. They said he'd get worse before he gets better due to all the stress and injury from the infection and the surgery--he's definately worse, but the surgeons said he's not worse than they'd expect him to be.
Please pray as you are lead. thanks.

Thursday, March 19, 2009


11:55PM: just held a very fussy Nora for about 1.5 hours or so--I'm worried about her--she's usually not this fussy, though she's had a rough day with all the pokes and tests and the ambulance ride and all. her belly is definately bigger and of course, with her being so fussy I wonder if her belly is bothering her. she's still breathing without any assistance at all. They are giving Ryan additional fluid to help keep his blood pressure up. We are sleeping, literally directly across the hall from the babies (I use the term "sleeping" loosely here). I am going to try to get some rest. I miss being at the other hospital--I know this is where the babies need to be right now, but the other hospital is better for me emotionally. but, whatever, my emotions are the last thing I am thinking of, really. I appreciate the comments and prayers. I'll post an update sometime in the morning or sooner if things change.

8:30PM: just went and checked in on them. Ryan's blood pressure is dropping and they are now giving him meds to help keep it up---please pray--this part really scares me.
Nora is settled in, sleeping peacefully. I noticed that she is breathing completely independently--no cannula, no oxygen, no nothing. She looks great still. I'm going to go kangaroo with her.

8PM: sorry for the late update. lots has happened. Ryan had surgery, an exploratory laparotomy, and survived, which I am so thankful for. He had about 1/2 of his intestines removed--it was "liquefied" according to the surgeon, so we are thankful he got his surgery when he did. He is now back on the conventional ventilator. Some of his IV lines are now out b/c they put in a central line. He looks better to me. He has a large horizontal incision across his abdomen and two ostomys (ies?) where the open ends of his intestines are--he will be on bowel rest for 4-6 weeks, then they will try to reattach the two ends of his intestine. fortunately, he looks pretty good. unfortunately, he lost a lot of his bowel--including the ileocecal (sp?) valve--this could pose some problems with him being able to eat and digest normally in the longrun, but it's hard for them to predict how much. He is having another head ultrasound to check for bleeding and PVL tomorrow, which he is at increased risk for now with all of this going on. He is very puffy looking because he's so sick....it doesn't really look like him right now. We are at his bedside holding his hand and touching him as much as possible. He was given paralyzing meds, so he's not moving now--he'll probably start to clear those meds tomorrow and then they might be able to back off on the sedatives.
Now for the other news---Nora is here to rule out necrotizing enterocolitis--this was what I was hoping and praying to avoid. Her belly was a bit bigger today than usual according to her docs--no other symptoms. They stopped her oral/n-g feeds at St Joes and started antibiotics just in case. They said they wouldn't have done it if Ryan wasn't so ill--they are being more cautious than usual. We requested they look in to transfering her to the university hospital now, while she's still doing well in case she deteriorates and needs surgery quickly, like Ryan did--they were able to transport her and now she is next to Ryan in the NICU here. So far, her demeanor is good, she doesn't look sick--she was really angry about all the tests they ran today. Her spinal tap and cultures are fine so far. If she still looks good in 3 days, they will probably stop the antibiotics and start feeding her by mouth again. Let's pray that she just has regular old gas in her belly like the rest of us. I'm going to go hold her tonight. I'm thankful she was able to be transported here--now we at least have 2 of our kids in the same place again. Her head ultrasound to check for PVL has been moved up to tomorrow just because they do things differently here, i guess. please pray that this ultrasound is very boring and that they see nothing abnormal. i don't know if we can handle more bad news.

1:30PM: Ryan was examined by the UM surgeons and they decided it best to operate now instead of waiting for him to get worse. We spent some time with him while they were getting him stabilized here at the U. He is in surgery now--they took him at noon and it's now 1:30. They said it would take about 2 hours but they had a lot to do in that short time. I called to find out how Nora is doing and she's still healthy, thankfully.

AM: So far, Nora is OK. I'm worried about her, of course, since Ryan seemed wonderful until 8am yesterday morning. Any hope I had about their previous trajectory is now gone--I see how quickly things have changed. She is staying here.

Ryan has just been switched to the regular ventilator at about 6:30am this morning--they needed to do this to transport him and he finally looked good enough to try that. his blood gasses are actually better on this ventilator now. his belly looks better, less distended this morning, to me and his color is much better. he is still very sick. he is going to the University now (at about 9am) and will have surgery sometime this week most likely--we will know more once the University surgeons see him (they are at this hospital too and have already seen him here)--it is very likely that he will need multiple surgeries to remove the dead part of his intestines. John and I stayed here overnight. We are going to the University with him after we change our clothes quickly.

thanks for your prayers for Ryans healing and that Nora stays healthy.

Wednesday, March 18, 2009

Ryan is very sick

update at 6pm: he perforated his intestines--he now has a tube stick out of his abdomen to deflate it since it was filling with air and preventing him from breathing (and preventing the ventilator from breathing for him). they want to transport him to the University hospital for monitoring and in case he needs surgery but he has to be more stable first. he has been thru so much today. he has lines in both arms, both legs and one in his head. he has been cultured and spinal tapped and poked more times than I can count. this is very scary. please keep praying for Ryan. Nora is doing well today.

morning post: Please pray for Ryan. He has necrotizing enterocolitis and is very sick. He's just now being put on a ventilator again. They are watching him closely.

Tuesday, March 17, 2009

change of plans

No brain scans this week--they are being postponed for another 2.5 weeks--no new date yet.  The current attending physician says that doing them now won't change their management and they'll need to be done again in 2-3 weeks anyway.  That's not bad news or good news.  I guess it's one less thing to worry about this week though.

They have eye exams coming up on the 25th.  checking for ROP, I presume, though I haven't asked if they're looking for anything else.  Let's be praying for miraculous, unremarkable exams.

Ryan is doing great on 1.5 L of flow via cannula.  Nora had to be turned back up to 1L as she didn't tolerate the decrease they tried yesterday--they'll try again in a few days.  Both babies did well nursing today.  Nora, in particular, nursed for 15 minutes--their nurse said that's better than many fullterm newborns--it takes a lot of energy and coordination to do all of it, especially in babies that can't breathe totally independently without trying to suck and swallow at the same time....so they can only try once per day right now and both babies need additional oxygen while they try to nurse otherwise their oxygen levels drop too low.  next week we'll try twice/day/kid.  once they get nursing established, they'll start on bottles and transition off the n-g tube feeds over the course of many weeks.

both parents are exhausted. i can't think of anything else right now.  thanks for reading and praying and supporting all of us.

Don't forget the March for Babies--- click here to donate or join our team.  i've been asked to clarify that this money does not go to our family.  It goes to the March of Dimes.  The walk used to be called WalkAmerica--I remember doing this walk with my mom as a kid.

Monday, March 16, 2009

whoever said...

"don't cry over spilled milk"--was obviously not referring to human breastmilk.  I'll spare you the ugly details behind that comment.

Anyway, both babies are gaining--Ryan is 3lb 1 oz (was 2lb 15.4 ounces 2 days ago)--Nora is 2 lbs 15.5 ounces (was 2lbs 14.7 ounces 2 days ago)--they are both up to 28cc of milk every 3 hours and tolerating their feedings very well.  The neonatologist says this is a huge accomplishment--to get babies getting nutrition via their guts, pooping and peeing appropriately and gaining weight is such an important thing for preemies.

They are weaning down the flow of air into their noses now.  They started this morning and there were very few alarms today, so I think they did well.  Ryan is down to 1.5L/min of air via nasal cannula.  Nora is down to 0.75L/min of air via nasal cannula.  Nora had a little trouble maintaining her oxygen level while nursing today--she forgets to breathe.  Ryan decided he would rather sleep than nurse today, so we will try again tomorrow.

They are both still in little incubators called isolettes, but the temp inside the isolettes isdown to nearly room temp now as they are able to maintain their body temperatures better (it started out at body temp when they were first born)--so a few more fractions of a degree lower and they will be out in a regular crib, still bundled up all the time.

Visitors Sunday: Amy L, Wayne and Pat
Monday: Grandpa, Emily

Saturday, March 14, 2009


I walked in this morning and the NP said nonchalantly "you can try nursing them each once today if you want....they won't do much but it's fine to try."  This was one of those moments I've been waiting for.  I was so excited (they'd previously told me it'd be another week and a half before we could attempt)--that seems like an affirmation that they're doing really well.  So we did nurse--both babies latched and nursed for a few seconds at a time--the RN was impressed with them nursing at only 31 weeks gestation.  This is also a big deal for me as I've been feeling pretty helpless with them being in intensive care and here's something that only mama can do, so it was a great pick-me-up after a rough day yesterday.

Additionally, they were moved into a quieter corner of the NICU today so that they can get more rest.  Previously they were basically inside the nurses station because they were the smallest babies in the NICU, but now they are stable and "just convalescing" so they are moved to a less acute bed.  that's more great news.

Weights are up, but again, not as much as we'd like.  They're supposed to gain an ounce every few days and they're not.  They are gaining though--still a hair under 3 lbs each--hopefully they'll hit that 3 lb mark by Monday when they get weighed again.

Here's the babes in their new duds....aren't they cute?

You can't really see Ryan's "Property of MOM forever" onesie, but it's super cute.  He was too comfy and sleepy to bother by the time we got the camera today.
Nora is so chilled out now--she really is not that same fussy baby that screamed bloody murder with the CPAP a couple weeks ago--she is still acting appropriately, not lethargic or anything, just crying a lot less.  I think she's way more comfortable without so many interventions and pokes all the time.

Thanks to our growing March for Babies team!!  Keep the add-ons coming and invite more people as well.  the more, the merrier.

Visitors Friday: Jaimie
Visitors Saturday: Steph, Auntie Joanie

Thursday, March 12, 2009

Thursday's update

IVs are OUT!  if you go back and look at the pictures, you can see that Ryan had a PICC line in his right leg for TPN and Nora had one in her right arm--no more!  they are IV-less as of this afternoon and just on oral feeds now.  They were both weighed and are now 2# 15 oz each (no gain for Nora--small gain for Ryan), which was a bit disappointing, so they are now adding more calories to each feeding.  They will continue to get weighed every 2 days.  They are too cute in their preemie clothes, which really are too big for them--I'll try to get a picture soon.

So now, they are working on growing bigger to put on weight and growing older so that they get better at breathing.  I'm told that in about 1 week or so (around 32 weeks gestation) we will attempt nursing a couple times a day with each baby. Right now they are getting pacifiers during their n-g tube feedings so that they can associate sucking with a full belly--they are both demonstrating a strong suck, so that is really good.

Lastly, both are due for their second routine ultrasound of their brains in 1 week (on the 19th)--the doctors are looking for evidence of PVL--I would by lying if I said I wasn't worried about this--I think, particularly with Nora, since she was so sick immediately when she was born--I worry that she was deprived of oxygen for some time--I've asked the neonatologist about this and he didn't really comment either way. he thinks the risks of PVL at their gestational age is only about 1%.  Anyway, we could really use prayers for this--i'll be sure to mention it again as the dates approach.

Also, I'm still in need of teammates for the March of Dimes March for Babies---I have a three-person team right now and we can definitely do better.  It's a family affair, so bring the kids--it starts at 9am, so should be over by naptime, right? see the entry below for further information.  I would do a better job of trying to get participants, but I'm not very creative right now (or ever, really, if you know me) and I'm tired, so I'll just continue begging--PLEEEEASE???!!!

Wednesday, March 11, 2009

Overdue Updates

OK, lots of good stuff coming at you.  John and I are both really encouraged right now at their progress.  Basically, both babies are progressing similarly, except Nora's a little bit better at breathing than Ryan.  Nora is breathing room air, but the cannula pushes the air directly up her nose.  Ryan is on a smidge of oxygen (he's at 23%--room air is 21%) and is doing great--off the CPAP totally for the past 5 days.  Both babies' o-g tubes were out once the CPAP was stopped and now they have naso-gastric tubes (n-g), which are much more comfortable for them.  They are both getting 16cc's of milk every 3 hours and, as of yesterday, their milk is being mixed with "human milk fortifier" to give them extra calories and nutrients.  Their milk will be mixed with the fortifier for at least a few months.  Yesterday I changed tons of nasty diapers--yay!
IVs should be out TOTALLY within the next 5 days!  They stopped the IV nutrition already and babies are both just on some sugar water for the next couple days while they adjust their feeds a little bit. 
Nora is now 2 pounds 15 ounces (born 2 lbs 8 ounces).  Ryan is now 2 pounds 14 ounces (born 2 lbs 11 ounces).  They think that the reason that Ryan is not gaining weight as well as Nora is that he's been burning more calories trying to breathe than she has.

Also, now that they are both breathing so well and the staff doesn't have to watch them breath so much (to make sure they aren't working too hard to breathe), they are now dressed!  I'm going to go shopping and get them some preemie clothes.   They are both getting a "preemie head"--very flat on the sides--from laying on the sides of their heads so much--they are starting to do some "head shaping" and encouraging them to lay on the backs of their heads more.  Problem is that each of them has strong preferences for laying on the sides of their heads--it helps them breathe easier when compared with laying on the backs of their heads.   hopefully the headshaping helps with this.  Here is little miss Nora--she has a little halo-looking circle pillow that she lays on--this is part of the head-shaping.
waving hello...

Ryan in clothes
And, just to end with a funny story: I tried on my pre-pregnancy jeans yesterday.  the end.

Monday visitors: Amy W, Elka, Julie
Tuesday visitors: Grandpa Wayne
Wednesday visitors: Nana, Aunt Patty

Saturday, March 7, 2009

March of Dimes March for Babies

This was the one real constructive thing we could think to do with all our nervous energy.
We are walking for the March of Dimes in the March for Babies at the end of april.  I am the team captain (self-appointed, of course!)--and I need some teammates--there's more info below, but PLEASE consider joining our team--let's make tons of money for this great organization that serves to prevent preterm births and birth defects and to promote awareness of neonatal health concerns (and more).

The March of Dimes, March for Babies has more information about why to walk and where your money goes and what their organization does at this website.

Join our team "Walking for Nora and Ryan" or make a donation toward our team if you can't walk (I hate soliciting, but I will for this). please, please, please.  Let's get a great big team together and do good things together!

Weekend Update

Still wonderfully boring--boring is good.
I didn't get a chance to talk to the neonatologist today, but in speaking with the nurse, all is well.  Both babies are still tolerating the increases in their tube feeds every day.  For the first time today, Ryan held a pacifier in his mouth for quite a while without forgetting to breathe--previously his heartrate would plummet every time he tried to suck the pacifier, so this is some progress.  I kangaroo'd with Ryan today--what a sweetie he is--he just cuddles right in and sleeps.  Every once in a while if I talk, he'll open his eyes and turn his head toward my voice.  Today, the plan was to not put on the CPAP, but instead to just watch him all day and see how he was doing--so, when I call the NICU tonight for my nightly report with the third shift nurse, I'll be able to see how he did--I don't want to push him before he's ready, but it's such a big step to get off that CPAP.  We're told by the respiratory therapist that even if he does get off the CPAP, he may tire out and need it periodically again (they told us the same thing when he came off the ventilator 2 weeks ago)--they'll just watch.  I think they tell us that so that we don't get too down if he does tire and need the CPAP again.

Nora slept the whole time i was there today, but John got to kangaroo with her when he was there later in the day-unfortunately he got fired from kangarooing as Nora started having 'events' during their time together--but not until they'd spent nearly 2 hours together, so that's still some good time with daddy.  She is now above her birth weight for the past few days (maybe I mentioned that in a previous post? i don't know).  By the way, who knew 'kangaroo' was a verb?

Thanks again everyone for your prayers--by all accounts the babies are doing as well as could possibly be expected for their gestational age--just 2 weeks ago, they were both on ventilators! As for me, I've had a few good days in a row after a string of bad days.  I know John is beat b/c he's back to work in the midst of all of this.  Caitlin needs more time with me, that is evident. so I'll need to work a bit harder to make that happen--she's a trooper though.

Visitors: Maria and Kevin visiting with the babies and John.  Nana visited with the babies and me.  (Big sister was coughing yesterday, so no visits from her for a few days at least)

Friday, March 6, 2009

Playing with a Full Deck...at least our 3 year old is...

From Daddy:

Having a 3-year-old sometimes gives us all the laughs we need to distract us from our worries. Like when Jessica was still in the hospital, and she offered Caitlin a roll from Mom's food tray, and Caitlin nonchalantly said, "no, that looks terrible."

Well, when Jessica came home from the hospital she was pumping breast milk for the babies and Caitlin was extremely curious and asking mom about every little thing that she was doing. Moments later Caitlin asked me to go to the basement to get one of her baby bottles. I thought nothing of this because Caitlin is always taking care of her babies.  Later on, while I was doing the dishes and Jessica was on the phone, Jessica was snapping her fingers to get my attention and pointing to the corner of the family room. There was Caitlin, sitting on a chair with her shirt pulled up and two decks of cards on her chest with the bottle in her lap. Thankfully she only tried it with the cards and not the actual pump! Anyway, Caitlin's ensemble in the picture above is what happened when Uncle Dan allowed her to pick out her own outfit.

With Dad back at that not-so-interesting-thing-they call-work, Jessica is pulling double-duty on the kangaroo care. Here is a great picture of the three of them back together again for the first time since Nora and Ryan's birth.

In other news, both of them moved out of their first isolettes. Their new ones are for slightly more stable babies. They are now up to 8ccs of milk at each feeding and tomorrow will move up to ten, and they have outgrown their blood-pressure cuffs and moved on to the next size. Here is a picture of all the monitors the hospital uses to make sure each baby is safe. 
Add Image
And finally, Caitlin got to see her brother up close for the first time last night.

Thursday Visitors: Aunt Julie and Jaimie
Friday Visitors: Jaimie and Grandpa

Wednesday, March 4, 2009


well, it was John's last full day with the babies.  I'm so glad we got to spend these past 12 days together with the babes during the day. I will be flying solo tomorrow.

Updates on the babies:
Ryan--did not pass his 9 hour off / 3 hours on CPAP test yesterday.  By the 8th hour off the CPAP, he started "alarming." So they didn't make any changes today--but, from my observation, he did way better today.  I didn't hear his alarm go off at all at the end of his 9 hours.  otherwise, they did increase his feedings today and will continue to increase his milk and decrease his IV fluids over the next 8 days (assuming no pitfalls) to "full feeds."  he is still super cute :)
Nora--they turned down the oxygen flowing through her nasal cannula today to see if they could get away with a bit less.  She did OK, but I suspect there will be no real change in that tomorrow.  Every time I checked on her today, she was chewing the cannula, so that could be why she wasn't doing stellar.  She's much more calm now--still complains with diaper changes, mouth care and anytime anyone fusses with her, but settles quickly.  She's on the same track as Ryan with regards to meals.  she is still super cute :)

Niki came to visit us today.

As for me, I'm getting comments from friends and family on the blog and in real life noting how strong I am--fact is, I'm not.  if someone asks me how I'm doing, I cry.  If I stop to think for a moment about these babies, I cry.  As I type this, I weep for these babies.  I hate that they are struggling to breathe air that they should have no exposure to for another 2 months.  I hate that I couldn't provide them a safe home for a full 9 months.  I hate that their birthday was the worst, hardest, scariest day of my life.   My babies are in the hospital for an undetermined amount of time.  I start to think about all the "what ifs" that they may face in the coming months or years.  It's hard to breathe.  I hear the NICU alarms and beeps in my head when I'm home constantly.  My womb is empty and my arms are empty---it's just not right.
Fact is that I am not strong.  I've never felt more helpless, scared, inadequate and lost--I even feel guilty, like it's my fault, even though in my head, I realize that's not the case.  I don't know what happened on Feb 20th, the day they were born, which frustrates the scientific side of me, endlessly.  But I do know that we are being held up by a faithful God (whom I am angry with at the moment, I confess)--He has given us some peace and calm in this storm and has assembled an army of friends and family to take care of our practical needs so that we don't have to worry about things like making dinner, grocery shopping, care for Caitlin, rides to the hospital, etc.  Nora and Ryan are doing well for their gestational age and making good strides beyond expectations.  So, while I appreciate the thoughts that I am strong, I would like to take the opportunity to share that only God deserves that glory.  He is getting us through this.  Otherwise, I don't know where we'd be.  We can't imagine facing this alone.

Have you not known? Have you not heard?
Lord is the everlasting God,
the Creator of the ends of the earth.
He does not faint or grow weary;
his understanding is unsearchable.
He gives power to the faint,
and to him who has no might he increases strength.
Even youths shall faint and be weary,
and young men shall fall exhausted;
but they who wait for the 
Lord shall renew their strength;
they shall mount up with wings like eagles;
they shall run and not be weary;
they shall walk and not faint.

Tuesday, March 3, 2009

no news is good news

Just a quick update on the babies.  nora is still doing great on her nasal cannula and feeds, her bilirubin actually went down--just plugging along, no real changes.  the past 2 days she's been way more subdued--I guess she doesn't have much to complain about now that the CPAP is on hold.  Ryan is improving on the CPAP--he is down to just 3 hours at-a-time, twice a day.  The rest of the time he's on the cannula and he does well on it.  We expect that if he does well overnight tonight, he will be on cannula all day long starting tomorrow---we're hopeful--he seems much more comfortable on the cannula (he's got sores in his nose from the CPAP).  Ryan's also doing well with the M.E.N. -- but his bilirubin went up a bit more, so he'll probably be under the bili lights again after the next blood draw if the trend continues (which it is expected to).
In 2 more days they are going to start advancing the feeds and giving them more--so they should start gaining more weight at that point.  Right now they are both gaining weight finally, but are both about 80 grams shy of their birth weights still.  

Each day we are spending 1-2 hours kangarooing with them which is supposed to help them breathe easier, sleep better, help my milk supply--John has one baby and I have the other and we switch each day--we also read that babies who are kangaroo'd are discharged sooner than babies who are not.  So we think it's worth every minute and we wish we could do it longer, but inevitably after 1-2 hours we either need to pee or we are overheating (they wrap us up in warm blankets with the babies on our chests) and need a break.

John is going back to work on Thursday, so I will be there with both babies all day, then John will come up to the hospital after work and after picking up Caitlin from preschool.  the juggling act gets much more difficult as we  add a full workday for daddy into the picture, add a family dinner at the hospital somedays and hope that Caitlin can sit still long enough for John to spend a bit of time with the babies.  This is only the plan for 2 days since I still can't drive until Saturday--after that, we'll be able to switch up and separate our times a bit more.  Thanks to my parents and Aunt Julie for driving me to the hospital in the next few days.

Once John is back at work I will be the lone parent during the weekdays.  My schedule will look like this (once I can drive--starting next week):
-get Caitlin to school--usually at 9ish
-hospital at 9:30/10AM and listen to rounds and get updates from the RN, MD, NP and resp therapist.  greet babies if they are awake.
-10:30 pump
-10:45 baby care for both babies (diapering, take temps, clean their mouths, which get gunky)
-11am-1pm Kangaroo one baby
-1pm lunch
-1:45 baby care for both babies
-2-4pm Kangaroo other baby
-4ish pump again
-then either leave to pick up C from preschool or  wait for John and C to come to hospital (this part will vary depending on the day)
-if I'm still there at 5pm, will do baby care again
It'll be very busy days--but I'm so thankful we're able to be so involved in their care.

Thanks for continuing to lift us up in prayer--we feel it.  we really do.

Visitors today: Kathy

Monday, March 2, 2009

From Daddy: It seems that our little Nora has gotten a reputation for being feisty. Although they originally wanted to have her go part time cannula part time CPAP, Nora would have nothing of the CPAP. They tried putting her back on the CPAP and she threw such a fit that it was defeating their oxygen goals anyway. So...they put her back on the cannula and she has been fine ever since (it's been 48 hours now). This morning as the docs and nurses were all doing rounds the NP called it this way, "by her choice, Nora is exclusively on cannula."

Additionally, to all the nurses' dismay she has figured out how to turn from her belly to her side, which prompted the NP to jibe, "that's impossible for your gestational age!"She has pulled out her feeding tube four or five times (once with just her tongue and lips). Her nurse said, "uh-oh, you're a bad girl Nora." To which I quickly responded, "she's not a bad girl, she just makes some bad choices." This won't bode well for me when she is two, but will come in handy when she is a teenager and needs to set some boundaries with the boys!

Ryan, on the other hand, well, he is just laid back like me.

Both babies are making good progress, eating a little more, breathing a little better, and fighting their nurses a little harder. (The nurses here are very gracious and appreciate the spunk.)

Meanwhile, a special thanks to Uncle Dan who took on a weekend watching Caitlin so we could come up here unfettered. Both child and caretaker (I'll let you figure out which one was which) came out of the experience all the better for it.

Visitors: Katherine