Tuesday, March 31, 2009
Monday, March 30, 2009
Sunday, March 29, 2009
Saturday, March 28, 2009
Friday, March 27, 2009
Thursday, March 26, 2009
Wednesday, March 25, 2009
Tuesday, March 24, 2009
Monday, March 23, 2009
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
Saturday, March 21, 2009
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.
Friday, March 20, 2009
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
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
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
Monday, March 16, 2009
Saturday, March 14, 2009
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.
Thursday, March 12, 2009
Wednesday, March 11, 2009
Saturday, March 7, 2009
Friday, March 6, 2009
Wednesday, March 4, 2009
Have you not known? Have you not heard?
The 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
Monday, March 2, 2009
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.