we're expecting that she'll get off the IV antibiotics tomorrow. barring any growth in the blood cultures from a few days ago. (which everyone expects to come back clean.)
this evening she was still having de-sats, but no more than she had on the vent. i'm hoping they'll keep her extubated for at least a few days to give her a chance to warm up those lungs and really get them going. (also, to save them from additional scarring that can occur while intubated.)
her diaper rash is getting a little better, but the skin is still really broken down and it looks so painful!
she got another visit from uncle rob today... yay for visitors! too bad she's so small and can't really be held yet... but soon...
we're hoping that tomorrow she'll be stable enough for kangaroo care again. i'm trying to talk my mom and mike into trading off our kangaroo time so they get a chance to hold her. i'm not sure if she'll tolerate it- but she used to do really well while being held. lately she's been so finicky!
here's your nightly wren fix:
look at her little face! you can almost see it!! (they took the tape off of her chin and attached her feeding tube to the vent tubing. they have her on IV antibiotics now. they've stopped the nebulized ones. they sent off her blood for a 3rd culture. if nothing grows (again!) then they will take her off the antibiotics. her poo is a little more solid- which is good. and she's still tolerating feedings. they've lowered the peep setting on her vent to 6. it was at 7. it has something to do with the expelled pressure I think.. I can't keep straight what all the settings do. her average number(of all her settings) is about an 8-9 usually. for them to pull the tube it needs to be at in the 6-7 range... so she's close! :)
but, thadd and i have talked about it, and we would definitely rather have her on it a LITTLE too long, than have her extubated and then intubated again.
we're headed up there this morning to catch the rounds.
the nurse said that they are in fact planning on extubating her tomorrow! we're planning on getting there about the time the docs do bedside rounds so we can hear about her plan. (i've got to figure out some sort of schedule!)
thadd wasn't feeling too hot tonight... so he didn't get to go see her.. it was sooo hard for him!
her diaper rash was really much worse this evening. tomorrow i'm going to talk to the nurse about changing her every 2 hours. we need to clear up this "rash"! right now her touch times are every 4 hours... so she's only getting changed that often... she needs it much more than that now. she's a mega pooper! she poops and poops and poops! i'm actually a little worried about it- but, you guessed it, "it's normal"!
she actually lost 10grams today... but who's counting? they said they actually expect her to lose quite a bit once they take her off the vent again. breathing is hard work! so i'm bracing myself for those numbers.
as a brief aside about pumping i would like to say- it sucks! i totally know why people don't breastfeed/pump- it sucks! (haha... that's sort of a play on words and i didn't even plan it. aren't i clever?) i waited about 4.5 hours between pumpings today and one half of my body was unhappy! it was a hard-lumpy-tender unhappy... an almost unbearable unhappy! i was at the hospital to see wren and i actually had to sit in the car for 15 minutes pumping to relieve some of the pressure. i got 80ml out of the offending lactation tool. then, as soon as i came home, about an hour and a half or 2 hours later, i got 150ml from that same side. and i probably could have gotten more.. but i'm just going to set my alarm for 3 hours and WITHOUT fail take care of business. ouch! i had to use a warm compress and massage just to get everything out and relieve the hard- lumpy-tender-discomfort.
the little bird had a great night/morning! i got to speak to one of the doctors today about some of her changes...here's the scoop.
her vent settings are now down to 20 breaths per minute. this is down from 40. they've also adjusted some of the other settings, that i don't quite understand, down as well. the doc said they're almost at the minimum they can do with the ventilator. that we could probably expect her to be off of it in the next few days!!! yay my little breather!!! :) he said that if she didn't do so hot, and was going to need to be re-vented that we would know within 24 hours of extubation. if they take her off the vent they will also have to find a new way to administer the gentamicin that she's currently getting through her nebulized treatments. the doc said they'd work with rt on that and figure something out. (he said he doesn't want to leave her vented for longer than necessary just for the sake of the antibiotics because the vent could also be exacerbating the situation with the infection... infection clings to foreign things much easier to our bodies..)
they're redoing the blood culture from last week. apparently it grew something (a bacteria that is common for picc lines) after about 5 days. the doc said that this is usually classified a "contaminate". so, he's redoing the culture to see if anything grows again... he said she's not acting sick, so he trusts her more than the result. i was also comforted to hear him say that he didn't want to put her on unnecessary antibiotics- whew, that's a relief!
she does have a diaper rash right now. it popped up overnight. it manifests differently in preemies than in full term babies. (from what they tell me.) she actually had what looked like a pin prick on her bum- it bled! as well as a huge swatch of reddish raised area. (instead of the usual "rash" that you would see on a baby). the nurse explained to me that because their skin is so sensitive and thin it acts differently.
he expects her to reach a kilo soon! yay! he also said that we should really only look at the weekly trend in her weight gain/loss. that if they weigh her with a full diaper at this point it can change the results. they do want her to gain about half an ounce a day from here on out.
her feedings have been upped to 7ml/per hour. she's going to be a fatty soon enough!
they've also ordered the prolacta! yay! it's in her chart now that that is what she will be getting. prolacta is the hmf that is actually made from milk. according to the people who make it it is 6 times more concentrated than regular breastmilk. this is a great alternative to similac hmf. i think there is a time and place for formula- but just like most things... it is SOOO abused! (sidenote: i found that the omega 3 from algae that one of the docs was big on me switching to is actually made by enfamil. imagine, formula companies making supplements. i have to hand it to them for at least acknowledging the necessity for omega 3's in our health. i'm sticking with the nordic naturals. it's 3rd party tested and i trust the brand.)
more updates soon!
on a high note she gained 50 grams last night!!! YAY! that's a big gain for her, and puts her at about 2.3lbs! my big girl- right? :)
still good on digestion, tolerating feedings, and on the hourly 6ml. i'm hoping they'll be able to get her back to every 3 hours again soon... it just seems more normal.
the gunk in her tube has been less and less. though there is still a little there. i believe she'll be on the breathing treatments followed by the inhaled antibiotics for a few more days, then they'll re-test.
her Co2 was a little bit up from yesterday, but trending downward.
she got to meet her uncle rob today! it was so cute to see them together. he was so terrified of breaking her and jumped every time she moved. :) in a few months when she's fattened up a little bit i'm sure she'll be less intimidating.
uncle rob and wren
wren had an ok day today. in the morning they decided to up the frequency of the breaths that she is given by the vent. this is a minor setback, but caused her oxygen to be weened down most of the time to about 26%... which is great! (we're worried about the oxygen because of her eyes- remember about retinopathy?) anyway, the doctor said that wren just decided to "take a little vacation" and that they'll give her whatever help she needs. overall she said she's still not worried about her... they she's pretty normal.
I also talked to the doctor about the long term effects of the vent. she said that she would really like to see her off of it within 2 weeks, because it does cause scarring of the lungs. :( but, children's lungs grow until they are 7... and by the time wren reaches 3 the damaged part would make up such a small percentage that we wouldn't be able to tell any difference between her and another child. (good news.)
about the hmf (human milk fortifier). when I asked the nurses about this, then the resident, they all looked at me like I had 3 heads or something. they didn't seem to understand why I would even question it. they deferred me to one of the upper level doctors. that doctor was great! she said there is actually a company that somehow condenses human milk to pack lots of content into smaller quantities of milk. hmf made of hm! she said that similac also makes one.(this would be what I'm choosing NOT to give my baby).
she was just covering for the weekend- so she said she would check and see what they're using. we're going to touch base on it later today.
when I spoke to the doctor she said the main thing is nutrition- which thankfully wren has NO problem with! her little digestive system is working great! between 6.19-6.20 she gained 20grams. she had had some loss(which is "normal")- but is now back to 2.2lbs.
they also got back a culture on her lung secretions. it came back growing a little something. they aren't calling it pneumonia... but fwy gave her albuterol (sp?), like what is found in inhalers, to open up her lungs- followed by an inhaled antibiotic. this should last about a week- happening every 8 hours. it does speed up her little heart- but they said there are no side effects.
she hasn't had any blood work recently, but she was looking a little orangey the other day- I expect her back on the light therapy soon.
today she got to meet her gigi and pop for the first time... they were a little surprised and said she seemed smaller in person. i think she seems bigger in person. :) i guess seeing a 2lb baby for the first time is a bit of a shock for anyone! she loved them both and they got to spend some good time "containing" her. :) hopefully, we'll have some cooperative nurses and they'll be able to hold her a bit before they leave next weekend. (if she gets off the vent it makes everything easier. but she just isn't listening to me yet!)
gigi and wren
pop and wren
they've upped her feedings back to 13ml... but they've put the pump on continuous.. rather than for just an hour. it seems really pointless though, because she still has all the same bradys. whatever, it doesn't hurt anything for them to do it that way, so i don't care.
they're also using milk fortifier. which they were a little weird about when i asked what it was. after some research i've discovered that the number one ingredient is cows milk. it also contains soy. (which has hormonal side effects in babies and children.) they said they did this to give her more calories before she would actually be able to tolerate an equivalent amount of calories in a higher quantity of breastmilk. (if i explained that at all!) anyway, if you've seen my little picture over in the margin on this blog you know how i feel about giving cows milk or formula to babies and kids. i'm a pretty big stickler on the breastfeeding front. (although to say all my opinions on this subject would no doubt offend more than half of you, so i'll skip it unless you would like to talk about it... in which case i'm happy to discuss it with you. :) so, as much as i would like her to get the extra calories, thadd and i are really torn about this. we plan on talking to the doctor about it tomorrow. preemies already have so many long term effects to worry about... i just can't see adding to that.
her lungs still have a bunch of gunk... the cultures have come back clean though... so they're going the "it's normal" route. (just like with everything. i swear, the girl could turn neon yellow and start flying and they'd say it was "normal for a preemie"!)
her eyes still have gunk too. it's "normal".
today she tried to climb out of her little "nest". the nurse thought it was pretty funny, and added an extra barricade. the only problem with her little spurts of athleticism is the ventilator... which she could pull out... and have to be intubated AGAIN! she also picks her head up and turns it, which runs the same risk. as well as actually grabbing the tube and pulling. she really wants it out of there.
they also took the picc line out today. YAY! no IV's or lines on her anymore. (though this will undoubtedly change before too long. it's just inevitable. but for now she is free.
i'm sure i'm forgetting so much. i've got to start keeping a notebook with me everyday when i go in to talk to them and visit her... the days and tests are all running together now... it's so overwhelming!
on the breast milk front i'm still doing ok. pumping is a huge hassle... but i'm doing it for wren. :) (thadd says to say it with a smile- the best motivation is false motivation.) i'm getting over 200ml every session now. i'm planning on sending some to my recipient mommy/baby in washington as soon as i get the cooler. one cooler that i send will hold what i pump in a day. right now what i'm pumping in one day will feed wren for 73 feedings. (about) our freezer at home is already full. we're planning on getting a deep freeze this weekend sometime. by the way, if i know you and you need breast milk- let me know! (or if you know anyone who needs it.) i'm just really blessed with supply- and size j boobs at this point! seriously though, i realize what a blessing it is, and am so thankful that that at least is something that i don't have to worry about.
people keep telling me how strong they think i am, or how proud they are of me... i'm flattered really... but what else can i do? i feel like i should be so much stronger...i've had some breakdowns lately. (wren's horrific wednesday for one.) poor thadd gets to deal with an emotional preemie mommy and postpartum nutcase on top of it! (he's doing a great job by the way...love the man.)i just don't think you guys realize how vulnerable i am right now. helpless to help my baby! grr. i'm sure it's normal. but let me just say, if i seem strong to you- i'm really not. i'm just doing what you would do if you were in my situation.i almost don't know how i'm going to make it day to day... especially when she has a bad one. but we all do what we have to i suppose.
I'm exhausted and a bit overloaded..
tonight was the most horrific thing i've ever experienced. watching her writhing in what they called "discomfort" was so unbearable. and there was nothing i could do. i suppose this is what any mother would feel, particularly a mother who isn't able to even hold her child when she wants to... feed her child... or comfort that child... that is the hardest part of all of this. i can't bear to watch her get upset- and i'm totally helpless to stop it. i know that discomfort and unhappiness are all part of the human condition, but it just doesn't seem like something a 2 week old baby should have to go through. (that's how i see it as a mom anyway.) it made me so depressed to see her like that... so, no pictures tonight.
she did ok on her back for a while when we did containment and she had her binky. but not great. she's still on sipap. it is giving her 30 breaths a minute. they won't go any higher- so if she needs more they will have to ventilate her again. she's on 11ml every 3 hours. and they've taken her completely off IV nutrition! yay! they are keeping the picc line open for a while.... with potassium chloride. ick. they'll also keep the IV in her leg open. (it was used for re blood transfusion yesterday.) but good news on the feeding! also, pooping is going well! she gets a blood gas tomorrow(to check her co2).. which is something else that could put her on a ventilator. :( hoping it goes well!
wren got a blood transfusion, it's really normal. her blood count was low. her platelets were at 66000. that's low but ok for her. since she's not at risk for brain bleeds (that much) anymore they will only give her platelets if they're below 30k. they said when babies are born they stop making blood for 9 weeks. (interestingly at her size she only has half a cup of blood) the doc said we can expect her to need 4-5 blood transfusions during her stay. between her not making blood, and what they have to take to test.
they also had to put her on sipap. it's like the cpap- but it gives her more breaths. they found she was needing more and more oxygen lately so they did an xray. they found that her lungs weren't inflating all the way... so they upped the cpap from 5 to 6 and that wasn't enough. so they switched to the sipap.
they think her lung problems are possibly caused by an infection. the doc said an infection manifests itself as a fever in us, but can show itself through lung problems in a preemie. they took a blood and urine culture and we'll find out the results in 48 hours.
on a good note she's tolerating her feedings... and gained 40grams since yesterday!
on a good note she is now going to be getting 10 ml! yay!
and I may have found a recipient for my milk! a mom in Washington is interested. I just emailed her all about me.. she may decide to wait until I'm off the bloodthinners in 4 weeks.
add me feel.) I can't wait to be myself again.
I got to hold her for an hour tonight. as soon as she snuggled into my bosom as started sat-ing (o2 saturation) over 100!! they usually keep her between 88-94. so she got to go down 10%on the oxygen they give her. it was really touching to be able to soothe her. I'm still getting anywhere from 100-120ml each time I pump. it's really hard for me to remember whn I pumped last. I think I'm pumping about every 3-4 hours. the lactation consultant said that I could go up to 6 hours at night as long as I pump 8-10 times a day. I woke up in pain at about 4.5 hours last night.. no way I could sleep for 6!! I'm so excited to hold her tomorrow- though I'm still trying to get thadd to do it! he's really nervous. it's cute. I'm nervous too- don't get mer 6!! I'm so excited to hold her tomorrow- though I'm still trying to get thadd to do it! he's really nervous. it's cute. I'm nervous too- don't get me wrong! and it does hurt my heart to have ALL those tubes and wires coming off of her. I'm SO jealous of women who can have healthy babies! (not that she isn't healthy- but you know what I mean) I guess I should say full term babies. so- remember the blessing that is 3rd trimester discomfort!! it's something that I may never get to experience for myself. bummer. but I know that having wren at all is a blessing in itself... I guess we all have something to envy if we let ourselves. it's about learning to be content with what god has given us... whatever the situation. i've recently been reminded by a wise woman that each of our individual situations prepare us for some purpose. thadd and I losing max, and now going through this trial with wren, it helps us to really be able to work with others... and hopefully help them through similar problems.
I'm posting pics on facebook until I go home. then I'll tidy up the blog. the pregnancy blog will become the preemie blog. ;)
today we went during her "touch time" to see her. it was hard because she was unhappy the whole time! but it was nice to be able to help with her care. thadd got to take her temperature and change her diaper... I got to soothe her. I'll be posting more updates/info/pictures.... just as soon as I get to a computer...
they're sending me home on Tuesday I think...
I've been pumping every 3 hours or so.. I've been getting about 4oz or so each time. they seem impressed.. but hey, have you seen these things? they're huge! my H bras are way too small. as soon as I get home I have to order some new nursing bras... I guess I'll order size k or l or something... maybe I'll wait till I get fully engorged to order them. I'm totally open for pumping tips. it seems they I'll be pumping for about a month or more exclusively. (until she works out how to breath/suckle/swallow all at the same time). the lactation consultant was less than helpful... I have no clue what I'm doing here- she pretty much said "page me when you start breastfeeding". :/ grrr. at this point I feel like nursing would feel more natural.
ok... off to bed... have to get up in a few hours and pump.. wish I could hold my little bird.
if this isn't fixed by the meds she'll have to have surgery where they clamp it off through her back. :/ please pray that we make it over this next hurdle- the PDA closing. we're just taking it one day, one step at a time.
another risk is a brain bleed. this could happen at any time. there's nothing to treat it, nothing to prevent it. it is what it is. they gave her platelets today. (my low platelets affected her). this is all they can do- just try to make it so that she can clot easier if it does happen.
(my platelets came back at 36000, they delivered her within 3 hours.)
all of my labs are still normal. praise god! and it seems all my organs are functioning fine. I had an ultrasound to check for clots yesterday. so basically feel like I'm wasting these poor peolple's time because everything says I should be healthy. (except my random pain/bp issues) but it does beg the question- when do I come back? clearly my body can have allthe signs for a while without actually manifesting the disease... soo- when I'm at home and getsome high bps -should I rush in? I could be in liver failure- or fine for another few weeks (apparently)..
yesterday they gave me a pic line. (sp?) it's usually for chronically ill/ elderly/diabetic patients... but they also wanted to punish me before I left. :) really it's a good thing.. but I don't have to like it! (it's a line that goes in my arm and dumps out just before my heart. it's for IV/blood draws/ and antibiotics/nutrition if I need it. those of you who know me can imagine how disgusting the thought is to me- I have a hard time with IVs.. but as long as I don't look at it/ think about it/ and let thadd do the care for it/ I might not go insane! it's freaking me out!!! it should last the remainder of my pregnancy. it's pretty permanent. so- no more sticks for me! sticks for me.
speaking of that.. my new "plan" is a daily plan. dr. hill said that today we'll make a plan for tomorrow- and the next day plan for Thursday. she said we're taking tiny baby a steps. so, hopefully I'll be able to go home soon. as long as the pre-eclampsia stays at bay. (thank you lord!) they're "leaving me alone" for 24 hours"... then they'll start doing labs again.
it really makes no sense to me - or the docs- how I can feel sick but have normal labs... it's like "fake-out".... my bps the last few days have been fine too- 116/60s... totally normal! (from the 150s/90s)
I'm ready to transition home! I feel stupid being up here when I'm "fine". but definitely feel like everyday is a gift to wren at this point. praying that the abdominal pain and headache stay away!
I'm shooting for a diagnosis of divine intervention. :) as long as those organs stay quiet wren gets more time inside! I just wish I could go home!
they're thinking I may get to go home after all. since my labs keep coming back normal... I'll have to keep doing the 24 hour urine tests -woo-hoo! but if I can be ok, and wren can be ok... our prayers have been answered! :)
my bps have been all over the place- but since there's no "trend" they say that's ok.
I'll keep y'all posted as I find stuff out. they're re-evaluating me midweek to make the decision on home or not.
I'm not sure why my last post came out in parts- I hope it doesn't start doing that everytime- what a hassle.
thanks to the lansings and the bookers for the visits yesterday... and all the vittles!! never you fear- I will not starve on terrible hospital food as long as I have friends looking out for me!