Doctor. Doctor.

[Michele]

Yeah so after I held him for 1.5 HOURS this morning for his 10am feeding and all he did was sleep...I tried to rouse him gently, not-so-gently and nothing. He wouldn't even go near my breast. I was really hurt and so I didn't go back for his 1pm or 4pm feedings (I also had some errands to do today). The nurses tried to bottlefeed him his 1pm...and he took the whole damn thing! In 20 minutes!! How do I not feel like a failure?? I feel like I'm not good enough to be his mother, but the NICU nurses are. And they are going to try again at 7pm, but we're not supposed to go then (nurses shift change) and we're going to a friend's house for dinner...so if he does it again, I miss it and am not part of it again.

I feel like I have no part in any of his progress. It's my fault he had to be born early...and I'm doing nothing to make it any better. This sucks. Don't get me wrong, I'm very very very grateful that he's done so well and is still doing above what the docs predicted. I am really grateful for that...but none of it is because of me.

I hate this NICU/premie/post-partum blues emotional rollercoaster.

[Michele]

Tonight was even worse. We went in for the 10pm feed. I decided not to try to breastfeed, but that I would try the bottle....I figured why put myself through more torture if he'll take the bottle...

Yeah no. He started sucking great. Then he spit up everywhere. Then when I offered the bottle again, he went apneic, hypoxic and bradycardic....to the point where he became dusky and everyone became very concerned. I've never seen him do that before. He's never stopped breathing before. I lost it....I tried hard not to let it look like it though. I feel really really beat down. Right now I feel like I don't want to do this anymore. I hope that I feel differently in the morning....

Today is "shittiest day ever."

[Michele]

15 Sept 2006

I fed him today with a bottle!!

I went in this morning with a clearer head. My plan was to learn *with* Daegan...at his 10am feed, his nurse today (a nice one!) had finished all of her other babies early because she was determined to help me through this. She heard that I was a little upset yesterday and planned to help. We sat together and she showed me her technique...really, there is a technique to this...ways to position Daegan, how to hold my hand with the bottle....how to also hold his cheeks and chin at the same time...and between the two of us, he took his whole 10am feed from the bottle. Smile I stayed with him most of today so that I could get a better feel for him...usually I visit for only a few hours (1-3h) at a time. His 1pm feeding was gavaged as planned and then I fed him his 4pm feeding. He did have one of those scary episodes about halfway through, but his nurse was very calm and talked me through what to do and then encouraged me to try the bottle again after he recovered. And he did ok. After his 1pm gavage feed, I did leave him to get some food...and when I was gone, he had a scary episode that required flowby oxygen....I was glad I missed it. It freaked me out to hear about, but his nurse made it out to be not a big deal...that all premies like him do it... I think we were spoiled by how well he was doing that now he's acting more like the other premies I don't know how to react.

But overall it was a good day!!

And the vax: I told his doc I declined it for now, she confirmed that I understood it would make him "behind" (schedule wise) and that I understood the risks and left it at that. It was very non-confrontational.

And as for breast feeding: I emailed the lactation consultant. There is only 1 in the whole city and she isn't at our hospital...and our hospital is the big medicaid/wic center so people use free formula and don't breastfeed here so there isn't really anyone here that knows what they are doing/talking about. I'm waiting to hear back from her, but in the meantime, I am going to not try the breast at the hospital...and just work on bottles...when he comes home we can tackle the breast.

[Michele]

Today:

Today is a not so good day.

When I got there this morning, Daegan was very snotty. He sounded very congested in his nose. He also just looked poo-y. I had the nurse suction his nose and she got a bunch of boogers...he also was having a lot more bradycardias and desaturations (to the 70s)...and was staying low on his spO2 (mid 80s)....so she told the respiratory therapist and his nurse practioner and they decided to do a sepsis workup and culture him for RSV. When the resp therapist suctioned him for the culture, she got a whole shit-ton of crap outta his nose. They did blood cultures, CBC, CRP...his hematocrit was low...but it's been low and it wasn't any lower, but they decided that since he was "clinical" to transfuse him. His CRP was ok though. He really tuckered out trying to bottle his 10am...we ended up gavaging half of it. We gavaged the 1pm and 4pm because he was just doing crappy. After his transfusion he seemed to perk up...and he sucked down the 7pm feeding in less than 10min....a huge first for him....but after he started to look crappy again, and was desat-ing and brady-ing...I think they might end up putting him on nasal O2. It's really sad to see him like this. And it sucked watching him getting stuck for blood and IVs and he had crappy veins that kept blowing...and he would cry and cry...but I stayed around so I could hold him and rock him...I didn't want to leave tonight. And Russ is on call...on his birthday, even...and he was/is getting slammed! So he wasn't able to be around much...but he kept telling me how glad he was that I was able to be there for our little guy. I also requested that they give him my fresh milk from today, instead of the frozen stuff that is from two weeks ago. I figure if he's sick, then I must be exposed to it, and I feel healthy so I must be making antibodies to it...and they should be in my milk....and they should help him. The nurses and the nurse practioner didn't really think so, but they said they'd give him the fresh stuff if it would make me feel better.

Oh and the lactation consultant emailed me back and I think she sounds really knowledgable and nice. I hope Russ agrees that the $$ is worth it.

Go Gators! I hope they win tonight.

[Michele]

So he started to get better, and his RSV cultures were negative, blood cultures were negative...bloodwork ok. Yesterday he was doing pretty good, taking all feeds by bottle!! And even latched when we tried breastfeeding. But last night his temp started to increase and this morning he was sick again. He's been ~99F all day. They drew more blood (cultures, CBC, CRP) and swabbed his nose for viral isolation. His CRP was elevated, his WBC and bands were also up...so they started him on vanc/gent...and placed an OG tube because he keeps going apneic and brady-ing...and he's not doing so great trying to suck on the bottle...though he did great when he was latching on to the breast today...he just keeps going limp, blue baby on us. The docs don't seem nearly as worried as I am. I'm freaked...the nurses are so calm too. Nurses who haven't seen him in a while keep talking about how great he looks and how strong he is and how he's doing better than they expected...and I'm freaked! Anyway, we'll just keep waiting.

New pics!

[Michele]

Little buddy has pneumonia. He's on CPAP and has an IV in his head.

[Michele]

So it was the resident on call last night who made the pneumonia diagnosis and the call for the CPAP. When I got in there this morning, the RT, nurse and nurse practitioner were all a little annoyed that he was on CPAP...and took him off. He was put on nasal O2. The attending spoke with me today....this is the first time in 4 weeks that we have spoken with the attending...all of the other times it has been the intern or nurse practitioner (apparently this is the only attending who talks to parents...he's the nice/good one that the nurses are sad is leaving)...and he wasn't calling it pneumonia...yes there are some changes on the xray, but it could just be consolidation and not pneumonia....his concern is the bacteremia/speticemia...it's a meticillin SENSITIVE staph aureus...but Daegan is on appropriate antibiotics (vanc/gent....swtiching off vanc for nafcillin)...they are going to reculture blood tomorrow. All viral cultures/isolations were negative. His CRP and CBC were relatively unchanged, but slightly better than yesterday. On the O2 he has had significantly less apneas/bradys...maybe it's that the antibiotics are kicking in too. He looked exhausted to me today when I got there this morning. Poor kid just looked wrecked....but I held him...and kangaroo'd him...and he slept and slept and slept...and he seemed better this evening. I came home to let the pups out (Russ is on call) and I'm going back to sit with him some more...I hate being home alone anyway.

The IV in his head vein blew today, and the new one is in his hand. The head IV is so scary looking. I should've taken a pic...but I'm kinda glad I don't have permanent proof.

Up and down and up and down and up and down and...

Up and down and up and down and up and down and...

2 more weeks until that, honey....

[Michele]

Daegan's second blood culture came back positive...same Staph. Ugh! So now they are adding another antibiotic...rifampin. Kris, don't tell Thomas or he'd probably fly down here and beat them senseless. This poor child has been on 4 abx now for this one freaking "easy" Staph (which shows appropriate sensitivity to all 4 abx with MIC<2). They stopped the gent Friday, and instead of just adding that back in for synergy, they picked yet another antibiotic! And his poor veins are shot and they are having trouble keeping an IV...and a PIC line is out b/c of the blood infection (thank goodness because it'd be just another source of infection I'm sure.) They even shaved a part of his head for an IV.

Good news is that he is back to nippling his feeds...he's taken the bottle last night and today. And he latched and breastfed for about 1 minute today! He has been weaned to 21% O2 (basically room air) but with low flow. He only had 1 brady/apnea yesterday...hopefully that can continue!

Once he clears the infection (I'm trying to stay positive...but I'm scared shitless he's gonna die...probably just normal mom-anxiety), he should be able to come home. He has to have 7-14d of abx after the negative blood culture (next culture is Tuesday) and no apnea/bradys/desats for a few days. That is assuming he doesn't get another infection or some other setback...ya know like an antibiotic resistant bacterial infection, or C.diff from all the abx, or thrush or something.

You can probably tell I'm not in a very positive mood. I'm having a bad day...I'm not just sad like I've been...today I'm pissy and grumpy and mad and depressed and I just want to quit...and if one more person tries to tell me all the bright sides to the situation I'm going to go postal! Can't a person just freakin' bitch and be mad and hate the situation...and that's it?!?! I just wanna hear, "yeah it sucks...this blows."

I can't do any less than I'm already doing...I've stopped worrying about the house, cleaning, cooking, laundry...I don't worry about any of it. I make time for me...I do crossword puzzles/sudoku puzzles, I read celebrity gossip, I get lunch with friends, we watched the Gators beat Kentucky at a friend's house...and I visit 'il duce' (one of Daegan's nicknames). I've started making a point to kangaroo him daily (thanks jlynnb)...so I'm pretty much doing what I can for him, me, Russ and the pups....but I wish I could take a vacation from me....go to a time when none of this was going on.


Ugh. I'm sure I'll feel better in the morning, or in a few days.....but right now, I just wanna bitch.....and chill the beer so I can have one.

[Michele]

I went in theis morning and he's doing much better! He was off O2, adn had nippled all of his feeds well and had no bradys...however when I read the chart I noticed that they had noted edema in his legs...he was wrapped up when I got there and didn't unswaddle him b/c I was feeding him....so I look at his legs and the right one is much more swollen than the left and he's painful on it and not movieng it...(I'm kicking myself b/c I thought it hurt him 2 days ago and I thought they were swollen but Russ and the nurses convinced me otherwise...I'm soo sticking to my intuition now). He has more swelling up in the hip/groin area...and it's kinda firm....I wait impatiently for rounds so I can talk with the docs...

The nurse practitioner (NP) and attending (MD) walk over and the first thing the NP says to me is "would you consent to an LP?" WHAT?!?!?!? Then she starts going into about how we should look for a septic focus b/c his 2nd culture was positive...and then the MD piped in that maybe we sould back up and look at the leg first since that could be the source...so the plan was to xray the leg and the chest (why the chest? I don't know)....xrays are clean. So she (NP) comes back and wants to do the lumbar puncture and I declined. She can't give me a good enough reason. She doesn't want to miss a meningitis...but he has no symptoms...he hasn't bradyed in 24h, and hasn't needed O2...and is acting much better....she claimed that he was agitated all night and that can be a sign...I said he didn't seem agitated to me in the time that I was there (about 6-7 hours at that point...he was sleeping in my arms...very out)...then she tells me that staph aureus meningitis is really rare...and that if she gets a neg culture she couldn't completely rule it out....so what the hell is the point of doing it anyway?!!? I asked! And the reason to spinal tap and culture would be to treat with higher doses of abx and for longer...I said no to the LP. I said I would revisit it if he was getting worse or the 3rd blood culture was positive. I'm annoyed she pushed the issue so much....she didn't convince me it was indicated. AND I have no reason for his leg...and she wasn't going to investigate his leg further!! WHAT THE HELL!?!? At that time he has started to move it a little and the color was better and I was able to do passive range of motion and massage and he wasn't complaining so maybe it's getting better... I guess I'll see in the morning. I gave his night nurse strict instructions to call if anything changes. I was nice about it though!

If his leg looks the same or worse in the morning, I'm going to request an ortho consult and additional imaging (ultrasound/MRI). It just sucks now that I feel like I have to be there all the time to make sure he gets the care I want and doesn't get a bunch of extra tests...last night they thought it was a fluid retention problem (it's not symmetrical) and did a renal panel and started weighing his diapers to make sure he was peeing enough... the kid pisses like a racehorse!

Overall though, when I left tonight, I felt comfortable with where he was at.
I'm annoyed about his leg, but he really does seem to be doing better sepsis/brady/apnea wise...and he's off O2 and bottlefeeding!

[Michele]

Last night Daegan developed a nodule/mass in his groin and the resident and NP thought it was an abcess....looked and felt to be in the exact location of the inguinal lymph node...and no other node was palpable around it....yeah, that's also what the attending thought. I hate that I'm being a non-attending hater.... Russ is a resident and I was an intern last year....but somehow on the other side it's different. OK not really, and there really is no excuse...I just suck. But anyway, so since the lymph node was nice a big and the leg is still swollen and the foot is more swollen...they ordered an ultrasound. No results yet. But the plan is unless the find an abcess to drain...we're just going to wait for the blood cultures....if they come back positive and we have no lesion to drain, then we go to MRI. They're also getting an ID consult.

He's doing great otherwise. He's such a little trooper to have to put up with all of this...and his IV's keep blowing, so they have to restick and restick...I think an IV started all of this in the first place...he had a catheter in that leg...lower down but still that leg...I found a few case reports of children with Staph aureus femoral osteomyelitis and myositis from small wounds on their distal extremity...not that I think the nurses are doing a crappy job...it's just a risk of being stuck with a needle. So I'm hoping that if we get negative blood cultures and we don't have an abcess to drain....that I can get him home on PO anitbiotics after a week or so of IV antibiotics. So he doesn't have to keep getting stuck. I think I may be getting ahead of myself, but I have to keep looking to the future.

I hate sitting there rocking him...I mean I love sitting and rocking him...just not there. It's so soothing to me and him...and I want to fall asleep with him...I did today....and was woken up and told I can't do that....if I feel sleepy I need to "take a break." It made me mad...Ugh...he's my freakin' kid and I don't like being told what to do around him/with him. I hate that I have to follow rules in caring for my own child....take his temperature, change his diaper, then you can take him out and hold him, make sure he's swaddled, put on his hat, make sure there are 15 freakin' blanket layers between you so you can't possibly connect/bond...ergardless of the fact that I have a hotblooded boy who hates being all bundled/hatted 'cause he overheats.

GRRRR!! I just want him home!

[Michele]

ID doc wanted an LP but still wants to treat as if meningitis...still not exactly sure why we need the LP then...but anyway I'm sick of quesitoning. If it will make them comfortable so he can go home faster, so be it. Ortho consult wanted an MRI. Neo attending on-call makes the decision that only attending consults will do... (he was kinda a jerk about it though ) (A BIG thank you to the spouses of the folks called in tonight...I know it sucks.)

MRI showed osteomyelitis and myositis after the rad attending was called to read it. And then after the peds ortho attending was called in and the peds surg attending was called in, they decided no surgery...long course of antibiotics.

After Daegan was sufficiently starved (incase of surgery) he took his bottle like a champ! The little guy is sooo tough...he really is such a trooper. I would have given up by now if I was him, but he's still screaming at the nurses and docs, fighting with his hands, kicking his good leg....

Things pending: blood cultures from Tuesday 26th AM, and LP cultures from Tuesday 26th PM.

All else is good: WBC normal, CRP has been decreasing (still elevated but down to 2 from 10), temp has been normal, no bradys/apnea/desats, taking the bottle well.

I was a wreck before, but now that we're not looking at surgery I'm better....though a PIC line seems to be in his future....once the bacteremia clears....I hope though that he may be able to go home with the PIC line once the cultures are negative......we'll see....

[Michele]

His little leg looked better today...so *fingers still crossed* hopefully this means the antibiotics will work.

He nursed for 10 minutes today! It was really cool!

Without further ado....









Can you believe how big he is???? He has started to OUTGROW some premie clothes!

[Michele]

So it looks like the antibiotics are working. His little leg doesn't hurt as much! Before even if I just held him wrong, he would scream unconsolably (is that a word?)...then I could soothe him...now he doesn't scream!!! I mean if you crank his hip/leg around yeah he still hurts, but it's not just if you bump him like it was before. YAY for improvement! The plan for a PICC line isn't going so well...they aren't able to get one....so it's looking more and more like we are going to be headed for surgery. The peds surgeon though is really nice and awesome...so at least if he has to have the Broviac placed...I like the guy doing it. Daegan's crit has been steadily dropping...so to prepare...Russ went and guts-up and donated blood! And he didn't pass out! Being the good little ophtho resident...he can't handle more than two Q-tips worth of blood... Hopefully Russ' blood checks out ok for Daegan...I hated him having to get the transfusion before...and you know it's weird....because I give blood all the time...so I'm sure there are lots of other good people...non-dirty, non-crack-smoking, non-shooting-up, healthy people...who give blood...but still having to have foreign stuff injected into your body is scary. So they are planning to do the surgery once we get the clear from Russ' blood...basically they just have to make sure he doesn't have any weird antibiodies and that he is CMV negative...cause they don't know that they are going to "need" the blood, but we figure it's better to be prepared....I can hear my FIL now: "Proper planning prevents piss-poor perfomance."

Our Il Duce is living up to his nickname ethnicity and eating like an Italian! Little guy screams at meal time...I think he'd be better on a q2h schedule...or at least if he was getting more food q3h....but I'm working on it....when I feed him he eats 60cc consistently...some nurses aren't as good as me...ha ha...read a few posts up....j/k...but really I do feel like I'm getting the hang of him.

The neo and the NPs all keep saying....antibiotics for a llllooooonnnngggg time....but the ID keeps saying 4 weeks minimun...which would only be 3 more weeks from now. I hope that they let him come home with us even if he still needs IV meds...I can do it...Russ can do it....I can take him to a freaking clinic twice a day if they want...but I want him home!!!

He really looks good...and he's been more alert and awake when he's "up" than before. He's 6 weeks old already! He is starting to get the newborn acne though...yuck...

Me: I got a plugged duct again...I hate pumping. I hate it. And so I let it go too long....ugh...they plug up, hurt, I ache, get a fever, have to pump a lot..and it goes away. But it sucks! I finally got new shields...I think they are amazing!! They have really made a difference in the past two days!

I took the test for my LA state vet license yesterday. I had to drive 4 freakin hours for a 25 question multiple choice test...and drive 4 hours back. Why it's only offered in one part of the state is beyond me. California does it too....it's stupid. Really there isn't such an over abundance of veterinarians that you need to make it hard to get a license....seriously..... at least I passed. I don't have to do it again. Now I just have to send in my national board scores and set up and do the 8 week preceptor/shadow period and I can work. Goodness we need the money.

About working...I've been thinking about the whole daycare thing...I have to be concerned about RSV in Daegan for a while....I'd hate to stick him in daycare in the middle of RSV season his first year of life.....so I was thinking about waiting...that means though that I won;t start shadowing until April/May and then working/getting paid until June...that;s a long time. We'll need the money sooner. So I've been thinking about ahving someone come to the house to watch Daegan. That way I can still limit the contact he has with germs... How to find someone??? My friend here said she'd watch him tues/thurs...that'd be good, but her son goes to daycare...so then I think that I'm not really limiting...her son would be the perfect little fomite! I think I'll ask around the NICU nurses...they might know someone...

Russ is on Ophtho this month!! YAY!! He's happier...and he's been off by 4 everyday...Praise to the powers-that-be that he chose this specialty!!! I am blessed!

[Michele]

Daegan had his surgery today for the Broviac....ugh...I hated the wait. It's soo unnerving...I was a wreck all morning...and he came through it well. Sometimes the little neonates have to stay on a vent or with O2 after anesthesia but he did great and was breathing fine on room air! His belly is a little upset, he spit up his vitamins and milk all over me! Oh well...more where that came from I'm sure!

I hope all is well with the line. I really am getting pretty damn sick of that place...and all the different opinions on how he's doing/what's wrong/how long to treat/what way to treat/how to follow up...and all the damn restrictions...ya know? I just want my damn kid!!!! But he's doing well...


Oh and I LOVE ophtho!!