Wednesday, December 28, 2005
Still around
I'm here, the lowercase is here, the Mister is here. We're taking some time at home trying to get to know each other and how we will live as a family.
And I am battling to make the lowercase an exclusively breastfed baby. Obviously, this is something that is not coming easily for us. I pump but get less than an ounce of milk from both breasts COMBINED. When the lowercase is nursing, there appears to be more milk than this as it runs down his face. He won't latch on. At all. I have to use a nipple shield to "trick" him into thinking it's a bottle. Occasionally after nursing, his diaper appears to be dry. It's possible that there is some slight amount of urine in the diaper, but it isn't always obvious. (This generally happens only once in a day and not every day) The NICU lactation consultants assure me that this is not necessarily a problem.
The lowercase weighed in at 4 lb 9 oz at his doctor appointment on Monday. His next appointment (his 2 month visit) is the 6th. Not looking forward to that as he has to have shots. On the 4th he has to go in to the Synagis clinic to get that shot (to lessen the severity of RSV should he contract it). Today he had a follow up with the opthamologist to test for retinopaty of prematurity. So far, it looks good. The blood vessels in his eyes are still a bit immature, so he has to be retested in a month.
And now, sleep calls.
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Thursday, December 22, 2005
Home again!
The lowercase has been released (again). We have been home for ten minutes. Thus far all is well.
I am a bit on edge and trying really hard to not become a crying emotional basketcase. It is just so scary.
We have no indication of what caused the temperature drop other than the fact that he is little. Everything else checks out alright.
Will try to post more soon. Now? I'm going to try to get some rest.
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Sunday, December 18, 2005
Update on the lowercase
As of this morning he continues to eat well. He responded well to his blood transfusion. He is keeping his temperature up, though he is wearing a onesie beneath an outfit, a knit hat (thanks Jen!) and one of those fleece sleepsack things while swaddled in a recieving blanket and covered with another blanket (Thanks Julie!).
As of rounds yesterday, there was nothing growing in the blood culture, the spinal fluid culture or the urine culture. His bloodwork continues to be normal. He is showing no signs of any infection.
Which leaves us to wonder why his temp dropped so significantly. Our neonatologist posits that this is his one issue of prematurity. He never really had any of the problems associated with being born so early and has been a textbook best-case scenario. Even with this, she swears it is nothing wrong and that he is still doing far better than most. It's just going to take getting some fat on him to help keep his temp stable. The added stress of a new location with no sights, sounds and smells may have been part of what triggered the drop and once cold, he was too tired to move around much which would have generated heat so he got colder and was less able to move -- you see the major downward spiral there.
I don't know when he's coming home again. To be honest, I'm very afraid to bring him home now. Very. I just don't know how I'll get through that fear, but I don't think I have to worry about that just yet.
I spend my entire days in the NICU but will try to post again tonight or tomorrow.
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Saturday, December 17, 2005
The lowercase's return to NICU
I am drained. I don't even think I got a chance to post yet that he had come home. My son was discharged on Thursday around noon -- by the time we completed all the paperwork and had packed and loaded all of his things, we got home at 4:00.
Thursday night he didn't sleep. He was afraid of everything, including lying in his bed. Every time I would lay him down he cried. He wasn't sick, he wasn't hungry and his diaper was clean. He just wanted to be held. So, I held him all night long. And it was glorious. I wish I could do it right now.
Friday morning he was great, but at his noon feeding he just didn't seem to be sucking as vigorously or for as long as usual. And most of the milk was flowing out of his mouth and down my stomach -- essentially I was being used as his pacifier. We changed his diaper and it was clean and dry except for a little bit of yellow from his circumcision. That scared me because I feared it was infected. I took his temperature and kept getting readings in the 96-97 degree Farenheit range. I called his pediatrician. They wanted him to come in.
He cried and cried at the ped's office because he was hungry. Finally after he'd been examined and determined to be fine if a bit cool, I nursed him there (3 pm). The ped. called the NICU to discuss his low temp and did a quick white cell count -- completely normal. The NICU and the ped decided he just probably has a lower internal thermostat.
The lowercase fell asleep in his car seat on the way back home. We left him there so that we could eat something and then I left him in the care of his dad while I took a nap. When I woke up, he was still conked out in his car seat -- both of us were afraid to wake him since he was sleeping so peacefully. We had tucked an extra blanket around him and we felt that he would be fine there.
At 7:00, 4 hours after he'd last eaten, I decided it was time to wake him up to eat. Since he was so tired, I knew he would have to have a bottle as that's less work for him than breast feeding. His skin felt like ice and I was worried but decided to bundle him (swaddled in a recieving blanket and then wrapped in a very warm fleece blanket) to feed. I changed his diaper (wet!) and he didn't fuss. Now, my son has screamed from the beginning at diaper changes. He HATES it. I was (obviously) concerned. I could get only one ounce down him and he was asleep through all of it. And he didn't feel any warmer. If anything he felt colder.
I tried to take his temp with the pacifier thermometer, but it wouldn't read (I don't know if it doesn't go very low or if he has to suck it to make it work and he was just too tired acting to suck it). I took an axillary (under the arm) temp and got a very low reading -- 94.6 degrees F. I thought it must be wrong but knew it wasn't because he just felt so damn cold.
Before calling the ped's office, I decided to do a rectal temp since I knew they would ask me to anyway. It was 94.7. I called them and began prepping his car seat and diaper bag for him to go to the hospital. The doctor called me and said to leave immediately for the emergency room and said she would call ahead to let the NICU team know we were coming in.
So far, they have drawn blood for blood cultures and complete septic workup. They have taken urine. They have done a lumbar puncture to do a culture of the fluid surrounding the spinal cord and brain (looking for possible meningitis that could cause this). And he has had a blood transfusion -- his hematocrit was low (22 when it should be 30) so they needed to up his red cell count.
He's on all the monitors and in an isolation room (all infants who have been home have to be in isolation from the rest of the babies in case they carry something). He's doing great, eating like a champ, and just hanging out. I on the other hand am in hell.
I haven't slept much since he got discharged. I have eaten even less (first because I was so busy and excited and nervous; now because I am so worried that every time I even look at food I feel sick and if I eat it, I fear I will vomit and I know I will have diarrhea [too much information, I know, but I don't care]). Since Thursday I have eaten 1/2 of a sandwich, about 3/4 of a personal pan pizza and one bread stick, and one chicken nugget and a bite of a french fry. I haven't really slept -- maybe 5-7 hours in all that time.
Please...whatever you do when you're in need...do it. Pray for us, think good thoughts, do whatever it takes. I need my son to get through this and be healthy again.
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Monday, December 12, 2005
In which I realize I don't have it so bad after all
Timmy is not home yet (obviously) and we don't know when he will be. He's fine -- was checked for infection (again) and there is no evidence to suggest he has one though all of the results of the blood work/urine analysis and cultures are not in. The part that is in is all normal, so yay for that! He's gained another 40 grams putting him at 17something...which equates to 3 lb 14 oz. Almost four pounds -- only 2 oz (60 grams) to go!
The baby beside us was also supposed to go home today. A little girl. Her parents' first. She was also doing just great. And then they did a head ultrasound. She thought it was routine since Timmy was also having one. Timmy's was his 6 week ultrasound to check for neurological development and ensure there were no hemorrhages (a word I can't spell and am too lazy to spellcheck). His came back clear.
Hers was for another reason. Apparently a nurse felt her soft spot and thought it felt too "full." So...they checked it out. And she has hydrocephaly. They are doing an MRI and a CT scan tonight to determine if there is an obvious cause for the fluid buildup (a blood clot, etc.). She may have her head tapped (like a keg to release the fluid). She may have a shunt to release the fluid. Or she may have to have full out brain surgery to fix/remove whatever the cause of the pressure and fluid buildup turns out to be.
All in all, our room was a devastating place to be today. First I lost it because Timmy didn't want to eat, had dropped his temperature significantly at one point and then had to have an NG tube inserted because his food/calorie intake was not at the minimum level. Then the mom next to me found out about her little girl. And both of us felt like we had been hit by a truck by the end of the day -- so close to home, yet neither of us making it.
Granted, she was hit by a much larger, much more scary truck than I was. Timmy could still be home this week. And I know I still have much to be grateful for. Strangely, one of those things is an overly cautious attending neonatologist who will not let my son come home before he is absolutely ready.
(And in an odd bit of foreshadowing, the other mom and I were talking early in the day, long before she spoke with the doctor. And I said that I was feeling down and followed up with this gem: "Just imagine how you would feel if you were told that she wasn't coming home today after that was already a done deal." Seriously. I said that. Shoot me now. I know I didn't know and had no way of knowing and for that matter neither did the other mom, but dammit -- I wish I could go back and unsay that. I don't want that to be in her memory. I just don't.)
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Not home yet....
Quick update as Mr. W wants his computer back.
The lowercase's paperwork said he would be released Sunday. We were informed of that on Saturday morning and completely freaked out because seriously, are we really ready for that?
Then came rounds. We have a new attending for the next three weeks. She is a bit more cautious (for lack of a better word) than our previous attending. She wants to monitor his weight gain a bit longer after the change from 24 calorie formula (or calorie fortified breast milk) before sending him home.
She said Saturday the monitoring period would be "about a week." It may be less. Who the hell really knows.
He is not on any heart/lung monitors. We have begun referring to him as "Lowercase: Unplugged." So, basically he's just hanging out in an open crib, having his vitals checked at each feeding time, and being weighed once a day. He will be home sometime this week/weekend. We just don't know when. Basically whenever the new attending feels it's ok to send him home and let his pediatrician monitor his weight gain.
(Their concern with his weight gaining is due in part to his lack of body fat. Instead of gaining fat, the little guy just keeps growing longer. He is fatter than he was, but they would have liked for all of his weight gain to date to have gone to fat for insulation against the harsh winter.)
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Friday, December 09, 2005
So little time
I don't have a lot of time anymore. There is so much going on!
We asked during rounds yesterday and it is most likely that the lowercase's homecoming day will be Tuesday. He has only two days left of his seven day countdown, however he is still in his isolette and has to be weaned down to room temperature (he currently lives in 27 degree [Celcius] and needs to get to 26/26.5 degrees). The nurses expect this to take about a day. Then he moves to the open crib. Once in the open crib they will alter the caloric content that he is taking in (from 24 cal/oz to 20 cal/oz). Again, that should take about a day. The extra two days are built in to ensure that he adjusts well to all of this and may not be necessary. The soonest he could come home would be Sunday evening, but since discharges are generally done in the mornings that leaves Monday as the earliest.
Of course a lot depends on new arrivals to the NICU. NICU capacity is 52 babies. Two pods are being renovated so there are 12 fewer beds than normal. Due to several sets of multiples, they are over capacity. (The sets of multiples: Several sets of twins; a set of triplets; TWO sets of quintuplets -- one set born by emergency c-section Wednesday night)
As of yesterday, the NICU has 56 babies (and they did 6 or 7 discharges yesterday alone!). There are two annexes -- the one we are in (developmental, prep to go home) in the pediatric ICU and another in the newborn nursery.
If the lowercase is NOT out of his isolette or weaned down on caloric content by Sunday, he will be transferred out of the NICU and into the newborn nursery (under the care of those nurses and not the NICU annex there) for a day or two so that NICU space can be freed.
One thing that has me in fear...After the Reglan was reintroduced, they also added 5 ml of prune juice per day. He now poops CONSTANTLY. Since he is so regular, they took away the Reglan yesterday. We'll see how he does with just the prune juice helping his motility and if there are problems, he will immediately be put back on the meds. GAH!
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Wednesday, December 07, 2005
The lowercase? Coming home? WHAT???
Ok...so...I might have ovarian cysts. I had some pain, some odd discharge, so I went to my peri's office to make sure there was no infection from the c-section. They found nothing except what, by pelvic exam and external pushing, appears to be a swollen right ovary. Which of course could mean cysts. Which could really suck ass.
I went for an ultrasound today to find out what the hell is going on down there. But for perhaps the first time in my life my bladder was 100% TOTALLY EMPTY! I proceeded to down a 20 oz bottle of water and multiple glasses of water from the water cooler (one of which I spilled all over my arm and leg, the icy water soaking into the velour [maternity] Juicy-knockoff tracksuit I was wearing and leaving me feeling cold and wet for HOURS). And yet still the bladder remained empty...and I almost vomited from the excessive amount of water in my stomach.
When I got to the hospital, my darling little boy was looking as cute as ever. No. Cuter. (Each day I think he couldn't possibly become any cuter, and yet he does!) He refused to latch at the first attempt at breastfeeding and was given a bottle by the nurse. While she did that I prepared to pump. Before I did, it was time for rounds.
Now, I don't want to jump to any conclusions here, but I think my son is coming home. SOON. My assumption is based on a single comment from the attending. He said, "We're looking at discharge early next week...or possibly the weekend."
Things that have to happen between now and then: - The lowercase must begin to regulate his temperature in an open crib (expected placement in his open crib: Thursday or Friday) - The lowercase must continue taking all feeds orally. - The lowercase must have no heartrate/oxygen saturation events for a complete 7 days (it has now been more than 3 days since he has had one). - The lowercase must have his food transitioned from the fortified breast milk or 24 cal/oz formula he currently takes to regular breastmilk or 20 cal/oz formula.
I must do much more than that. I have to wash sheets, blankets, and all manner of bedding. I have to buy a lot more things (like burp cloths of which I have NONE). The things I buy will have to be washed. I have to assemble and arrange things (changing table! cradle!). I have to get the cats' litter box out of my bedroom and into the laundry room and begin seriously preparing them for the new arrival in our home.
I am more anxious now than I have been in some time. So much to do. So much to do.
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Sunday, December 04, 2005
A few snapshots of the lowercase...
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Quick update on the drama
We have been saying to the nurses for several days that we think the Reglan should maybe come back. Saturday's nurse went on a thing about how the goal is not to medicate the kids, all medicines have side effects, he doesn't need it, blah blah blah.
I was upset and another NICU nurse in the hall asked what was wrong. I told her about the residuals and that they started about 3 days after the discontinuation of Reglan. She said, "Sounds to me like he needs to go back on it. Ride his team about it; if the residents aren't receptive to it, demand to talk to his attending. At least get them to consider it in case they haven't made that connection."
It is then time for rounds. I was holding the lowercase, so I couldn't go out into the hallway for them. I sent Mr. W out and am so glad that I did.
The attending was asking residents if there was anything that correlated with the onset of the residuals. All of them said no, that it was completely out of the blue.
Mr. W spoke up and said, "Can I say something?" Of course they allowed him to throw in his two cents. He said, "His Reglan was stopped on Sunday and his residuals started on Wednesday. Is the Reglan something we should consider reintroducing?"
Our nurse rolled her eyes at that point because didn't she just tell us he doesn't need medicine?
The attending then asked the residents what they thought a plan of action should be in terms of the residuals. They each had a different answer. He then said, "Ok, I've heard one correct answer. What do you all think that is?"
They all went through the thing of saying "me, me me!"
The attending said, "The parent has the correct answer."
Reglan was restarted yesterday. So far we have had six residual-free feedings!
I'm not willing to say yet that we're out of the woods, but it is starting to look like it. In addition, the temp on his bed has been dropped because he no longer has to send all the blood to his belly to get the digestion working causing him to be cold and then his body sends the blood to heart/brain at which point he begins to warm up a bit and then realizes he needs extra blood supply to his digestive tract....TEMP INSTABILITY! But, now? No need for that cycle and he's starting to move back to where he was before things got so fucked up. Maybe we will be in an open crib soon. And as the attending said yesterday, "It's not unrealistic to think you could still have him home in a couple of weeks."
Here's hoping he's right.
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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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