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Saturday, December 03, 2005
FUCKING HELL!
So I totally forgot I had this whole "computer" thing and it was actually attached to the "Internet" all the damn time....
We have had one hell of a week. We were doing so damn good. Breastfeeding was going better, he was finally starting to wake up and act hungry and yay for learning the things my son does when he wants food, right?
WRONG!
The lowercase gets fed every three hours, hungry or not. He has an NG tube (nose to stomach, but you're smart and know that) that he can be fed through. He also gets fed breastmilk from a bottle, generally when I'm not there. But he was NOT having that whole breastfeeding thing. He would get close to me and promptly fall asleep no matter how much he had been rooting (I think that's a myth. Seriously, the nurses will say he's rooting, but I see nothing) or how wide awake he had been.
So the NICU lactation consultant came up with a plan. Take a four hour time period. During that time, he can eat as much as he wants whenever he wants, but he can ONLY breastfeed -- NO supplementation with milk through the tube. This way he could learn that he's hungry and he has to do something about it. Makes perfect sense. At the end of the four hour period, that feed would be supplemented (or if he didn't wake up to feed at the end of it, we would assess how much he breastfed and supplement him through the tube an appropriate amount).
EXCEPT -- the damn nurse on DAY TWO of this arrangement didn't get it. AT ALL. She let my baby boy go just over NINE HOURS without any measurable amount of food. I kept saying to her "doesn't he get supplemented at the end of hour four?" and she said, "Yes." But she didn't do it. Three hours after hour four, I breast fed him again. He was starving. He fed for about 5-10 minutes, then fell asleep for a bit, but I didn't move him away because he actually NURSED IN HIS SLEEP. And then he woke up and did another 5 minutes or so of active sucking. This lasted from 4:30pm to 5:30 pm. Seriously. And then? At 6:30 pm she said that she didn't want to feed him during shift change at 7, so she'd just feed him early. She gave him 31 cc (31 ml, which is just over an ounce, but um...he doesn't even weigh 3 1/2 lbs yet, so that's a damn lot!) of milk an HOUR after the breastfeeding marathon! Which he did drink.
Do you know what happened next? My baby got BROKEN. Or at least his digestive system did. They check to see how he is digesting food by using a syringe to suck up the contents of his stomach through the NG before every feeding. He had a NINE CC residual at his next feeding. RED FLAG! They did an X-ray of his belly. The resident on duty in the NICU that night thought it looked like a strange gas pattern and worried he might be developing necrotizing enterocolitis (it's scary. I read about it in a preemie book that I have, but I'm sure googling it would be even more frightening and so I refuse to do it). So he wasn't allowed to eat and had to go on an IV and have blood cultures done to look for infection and get precautionary antibiotics. And did I mention that in all of this, the resident on call decided that it wasn't that serious and didn't bother to call and tell us this????
Seriously. DID NOT CALL US. I called at midnight just before I went to sleep like I always do because I will not sleep unless I hear that he is fine. And this is the conversation.
Nurse: Are you calling because we called you?
Me: Um....no....should you have called me?
Nurse: Um....I would have thought so...
Me (interrupting): How is my son???
Nurse: Well, we're not really sure of his status...
Me: Excuse me?
Nurse: Blah blah blah blood work, not acting like himself, lethargic, blah blah blah residual blah blah blah
Me: Um...ok.
I told Mr. W, he called back and asked questions while I threw clothes on. We then drove to the hospital. Where we looked at our boy who looked and acted COMPLETELY NORMAL for a very HUNGRY little boy who is now so damned hungry that he is too tired to be jumpin' around.
We were told that the bloodwork was normal, no signs of infections but they were doing 48 hour cultures anyway and he would be on the antibiotics until those came back clear and the IV would stay in for just a little while longer to make sure that he didn\'t dehydrate from the insane nine hours of not eating anything measurable (remember that he falls asleep breastfeeding, so he likely doesn\'t get much that way, which is what led to the initial decree of FOUR HOURS because four hours is NOT dangerous. Stupid fucking nurse!) Then we went and yelled at the resident for not calling us. She looked like she was going to cry. I did not feel sorry for her. She swears she didn't call because when she got there, she thought the nurse overreacted because his vitals were good, his belly was soft, he was very much a protesting baby when she examined him (he screams over diaper changes, stethoscopes and vitals checks where they prod his belly.) She said she only ordered the bloodwork to ease their tension, but she ordered it stat so she had to think something...
They fed him and before the second feeding? Another 9 cc residual. So that was when the X-ray came in and the unusual gas pattern and the order to not feed him. He did not get fed ALL DAY Thursday. I stayed there from 9 am until midnight. Around midnight was when they said he could begin being fed again. It made me feel better.
We also adjusted the breastfeeding plan because clearly the nurses were too stupid to handle the one we had. We'll eventually get back to it, but whatever.
Then? Another residual. This time 6 cc's. Also it had a chunk of something blue and fuzzy. It scared the shit out of me, but apparently in his rooting he managed to swallow a little piece of fuzz off the receiving blanket he was swaddled in. Still, it is not cool when you hear a resident say "What the hell is that?" I was the one who figured it out. How he did it exactly remains a mystery. But damn. He has been swaddled in that blanket while being bottle fed, so that's another possibility for how it got in his belly.
That residual led to another X-ray. The official diagnosis in all of the X-raying? He's full of shit. Not gas patterns blah blah...plain old the boy ain't poopin' enough. He used to have problems with reflux and was on medication for it. That medication increases intestinal motility so that the contents of the stomach can empty faster and be digested in a timely fashion leaving nothing in his stomach to then go up his esophagus which then caused his heart rate to drop from the pain. But he doesn't reflux anymore. The flap closing off the stomach from the esophogas developed further and doesn't let things back through like it did. So...no more Reglan. And once that was out of his system, the decreased gut motility caused him to not poop enough...
All in all, it was the whole combination of things. But he got taken off feeds yesterday at about 4 pm with the residual. The X-ray showed lots of poop. So, he got another suppository and according to his nurse, "He had a really massive voluminous stool." The X-ray following the pooping showed his system was cleaned out!
But we don't know if they will put him back on the Reglan to prevent this from happening again. I'm worried because every time they stop feeds, his breastfeeding is getting worse and I'll be damned if I have pumped every three hours for the last 4 weeks and 6 days to end up having to bottle feed him! A bottle here and there is fine, but I didn't get a "normal" "natural" pregnancy, labor, delivery, last two and a half fucking years of my life and I DESERVE to have this one thing happen the way God designed it to work! I'm a mammal -- if a fucking RODENT can do this, I damn sure can!
If they don't put him on the Reglan, then it could be quite a while of this feed, wait for the residual, get the residual, X-ray, full of shit, suppository, "massive stool", X-ray, all clear to re-introduce food and let the cycle begin again thing.
(Also, I forgot to mention that his temperature dropped to WAY low the first day of the problems because his body had to get the blood to his vital organs because it thought he was starving and now my son who was self-regulating his temp so well that he was almost to the point of being taken out of the isolette and put in an open crib now ISN"T. We have to watch his temperature extremely carefully right now and they had to turn t he heater back up on his bed and his body has to gradually re-learn the regulation of his temperature. I could cry. I have cried. I will again. And I will kill anyone who tells me that she's doing exactly what the orders say when I was there when they were written and was an active part of coming up with the plan and I KNOW that she is wrong. I seriously caved on that one because I thought maybe the doctors had altered the plan when they reviewed it before signing it into his chart.)
This completely has me thrown. Just last Saturday, one measly week ago, our doctor said he was doing so well and that it really looked like he would be coming home with us in 2-3 weeks max. Now, I just don't know. It won't be the 2 weeks...that would mean he would have to be doing perfectly well now so they could start a 7 day countdown (you have to go 7 days without a breathing/heart rate "event," be eating all feeds either from bottle or breast, and be in an open crib with a stable temp to be released fromt he NICU). Obviously, no countdown is being started today. I'd like to think by this time next week we will be in a countdown or ready to start one, but I'm not counting on it.
Another thing making me mad? A girl who was in our room (3 babies per room in an annex of the NICU...only stable babies who are nearing readiness to go home are allowed) got to go home. The mother was due only FIVE days before I was. Her baby was born at 33 weeks. They stayed in the NICU only 11 days. Here is why I am mad.
The mother smokes. She said she didn't quit because she was going to terminate this pregnancy, so why bother, right? Except that two days before her appointment for the abortion, her insurance got cancelled. Rather than go to Planned Parenthood, she decided it was "a sign" and didn't abort. I think she made the right choice but I think she should have quit smoking right then.
I also think she should have quit shooting up. Seriously. She actually talked about this openly. She didn't go into rehab until August. She now goes to the methadone clinic in the hospital every day. She can't breastfeed because of the methadone. She cried over this one day. I felt sorry for her...for you know, less than a fraction of a second. I quietly said I had to pee and would be right back. I went to the bathroom where I could stamp my feet and cry and get myself together. Because how fucking fair is that???
I did every damn thing right and I'm still in the NICU almost 5 weeks later. And she's home. With her drug addled husband and HEALTHY baby girl. She shoots up almost the entire pregnancy. I haven't even had caffeine in TWO YEARS. HOW IS THIS FAIR???????
So um...how the hell have you been?
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