Friday

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

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.

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.

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.

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

Nurslings!!

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'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???!!!