Movin' on up

(Picture is Mom and Eve...)

Lily is moving up in the world! Today they decided to change her feeds to every three hours. Right now, she is up to 23 mL every three hours and they will up her 2 mL every other feed. She needs to get to 45 mL every three hours, I believe, so she is approaching that! Slowly, but surely. And it appears she is tolerating the feeds and starting to poop on her own. The nurse asked the doctors during rounds if they would consider reducing her suppositories from one every 12 hours to one every 24 hours because she is starting to go on her own and she is taking meds to increase her bowel motility. They will discuss it tomorrow and decide then. Lily now weighs about 5 pounds 2 ounces. She is looking a LOT bigger to me! I fed her two bottles the day before yesterday and one yesterday. Tonight she was a little sleepy for her father, so they tube fed her the rest of the bottle. We like to get her to bottle feed because "digestion starts in the mouth." Tomorrow I'm going to try to be up there for a few of her and a few of Eve's feeds.



(Picture is of Mom and Lily)

Today, I fed Eve at 2 p.m. and she took the whole bottle pretty fast, without desatting and without any bradycardias. THEN, to my immense surprise, she REMAINED awake! She was looking around, looking at me, playing with my fingers...it was so awesome I wanted to cry. Good cry, obviously. I finally had to put her back to get a chance to see Lily before shift change and she was STILL wide awake when I put her back in. She's still clinging to her 1/40th of a liter of o2, but I'm hoping if she continues to sat well during her feeds and during her bed times, that they might try weaning her off of that. As soon as she is able to maintain her temp, take all feeds by mouth and maintain o2 sats without o2 help, she can COME HOME. Lily needs to get up to full feeds, get off her PICC line, take all feeds by mouth and have proper input and output before she can come home. She doesnt have desats when she eats, as a matter of fact they took off her o2 saturation monitor. Other than, that I have no other news. We haven't heard anything about LIly's vertebra. The nurse last night told us her kidney problem she had at birth was hyrdo something...essentially water build up in the kidney and ureter. But the urologist labeled it as "mild" in the renal studies he did and said her renal ultrasound was "excellent". I can live with those descriptive words. NOW, I just want to know if her vertebra will need management and I'm hoping to God it won't. She will definitely have an orthopaedic specialist check her out before discharge and said person will likely have an information consult with Eric and I to talk about her situation. The nurse tonight said ti would probably be informational, telling us to watch for this that or the other thing. But we'll have to wait and see. MORE WAITING...ugh, I hate waiting.

I'm going to try to upload more pictures now!!!

Daring to hope

Yeh, I know. Long time no post. But we were/are daring to hope that Lily is taking a turn for the better and I'm trying to be calm about it and not get all revved up in case things change yet again. Right now, Lily is being fed by bottle about 8 mL of breast milk every 4 hours. So far, it appears she is tolerating it and with the help of a medication and her suppositories, pooping a decent amount. We are still in limbo as to whether or not her troubles are over, or if this is a calm before a storm. We are daring to hope that she will continue to tolerate and they will continue to increase her feeds. Full feeds are 37 mL every 3 hours or 44 every 4 hours. SO, she has a long way to go. But pray she is on the mend and that she will progress quickly through the various stages and get to full feeds so she can have her PICC line taken out and be moved to the intermediate care nursery with her sister. It appears that is the only way that they will allow the girls to "see" each other and "be" with each other. Though not in the same bed, I could and Eric could hold them at the same time if they were both in the intermediate care nursery and they would be in the same area so we wouldn't have to jog between two to be with both the girls. It would be SO much nicer! If Lily does well with medication and suppositories, I don't mind at all if I have to continue doing them both when she comes home. If that's what it takes to get her home. It also appears she has some reflux, so they tilted her bed way up last night. But one of her nurses, Olga, said that there are medications to treat the reflux and that she should grow out of it. So right now, we continue to pray she will continue to tolerate feeds, increase feeds, poop more on her own, and be on the way to moving to the stepdown nursery with Eve.

Eve, the little bugger, still won't let go of her 1/40 of a liter of O2. And when she is on feeding tubes or taking a bottle, she desats and needs to have that upped to about 1/13. I think those equate to about 25 and 75 ccs. But I'm not positive on all the medical jargon. THe 1/40 is the smallest amount of O2 they can give her through the nasal canula, but she just seems to need it still even though it is so little. She is still doing well on the bottle. Eric fed her last n ight and got her to take a lot of the btotle and the nurse finished her up. I fed her the night before and got her to take 25 of the 37 mL and the nurse gave her the rest. We run out of time after half an hour, so the nurses finish up for us. It's looking like feeding sessions will take a while at home! I'm lucky I have a good supply of milk, as it appears Eve is just chugging away at it.

WEIGHT UPDATE: Lily now weighs...drum roll please...4 pounds 15 ounces. That's ONE ounce shy of 5 pounds. Eve, catching up to her sister, is now at about 4 pounds 9 ounces. That's ONE ounce over 4.5 pounds. So Lily has gained almost half a pound since birth three and a half, almost four weeks ago and Eve has gained a FULL POUND since birth! If Lily was taking more feeds, she would definitely have been up a pound I believe and be closer to 5 and a half pounds. But they are both going up and I'm glad for that. Lily can almost wear newborn clothing for babies weighed 5-8 pounds. And for those of you wondering length, the nurse last night said that the babies don't grow much lengthwise in the NICU unless they are there for MONTHS. So she said the pediatrician will be mapping the twins' lengths and giving us what preemie percentiles they fall into when they begin pediatrician visits.

All right, that's all I have time for now. We have more pictures, but until I find the camera cord I can't put any of them up yet!

Food for thought

Eric and I went up to see the girls tonight and held both of them. Eve was moved to the intermediate nursery where she is going to grow, learn to bottle feed better, hopefully get off her nasal canula and try to maintain her temperature by herself. Right now, she is still having trouble sucking, swallowing and breathing all at once. She gets tired and has heartrate decels and o2 saturation drops while feeding. Hopefully with practice she will stop doing that. She is also having temperature maintenance issues and was wearing a onesie, longsleeve/legged pjs and two blankets. OH, and a hat and socks too.

Lily was sleepy while being held today, but STILL very cute of course. AND, after we left, and I left upset because she was still not on feeds and I didn't know what was going to happen with her, Eric called NICU and guess what they said? They had given Lily about 5 ccs of he thinks they said Pediasure. I gather that is the one, not Pedialyte for a tyke who CAN'T go to the bathroom, because that is for kids with diarrehea someone told me. She does NOT have that! Anyway, I HOPE against hope that Lily can tolerate this small amount of food and that she can poop later on too. They are probably going to put her on meds to speed that bowel function up too. Still no idea why it was/is so slow though. BUT, I hope that Lily gets up to full feeds because if she goes tot he intermediate nursery, we can hold BOTH girls at the same time and they can be next to each other, though not in the same crib, and I can't WAIT Until they are able to interact again. It'll be three weeks tomorrow since they were together! Anyway, pray that Lily can digest that stuff they fed her, and from there hopefully digest breastmilk as well. God knows I have enough for the both of them!

And I hope the Eve video below will now work...No new pics yet. I haven't taken them off the computer.

The Poop heard round the NICU...

I'm falling asleep at the computer, so this isn't going to be a long update. BUT, I have to relate the poop heard round the NICU. (It should probably read heard "of" round the NICU, but that wouldn't be the cute reference to the "shot heard round the world, now would it??) Anyway, I was changing Lily's diaper this afternoon and was JUST about to close it up when WHAMMO, so projectile, yes projectile, pooped. It came shooting out, hit my hand, hit the bedding and monitor wires, hit the side of the isolette and THEN managed to shoot OUT the port hole on the side and hit the floor a few feet away. We were ecstatic that she had pooped, and I didn't even mind she hit my hand with hit! The doctors and residents were also QUITE happy, as they had just finished telling me that they still didn't knojw what was wrong with Lily and that she HAD to pass the barium and whateever else was in her otherwise they'd have to give her something to FORCE her bowels to move. (They've been giving her suppositories, but that's not the same.) The neonatalogist told me today that they didn't see any malrotation in her intestines and they didn't think ti was a structure abnormality causing her slow mobility through her GI system. BUT they hadn't ruled out something structural that woul dneed surgery. NOW, I'm hoping that is ruled out because she PASSED quite a bit of stool in that fountain of hers, and after that a bunch more came with the suppository. I totally credit the kangaroo care I did with her. That was the ONLY thing we were doing different the last two days, and suddenly she has stools? I can't believe it is a coincidence. We were told if she stops with her green aspirates *when the pull green stuff out her nasogastric tube, which is in her tummy...* they might be able to start feeds tomrorow.

Eve is doing just the same as before. Still feeding, still clinging to that last, lowest level on her nasal canula. The resident in charge of her, Emily, said they don't know WHY she needs it, it is virtually nothing at all, but the little stinker must just like the feel of it or something. If the NICU gets full this weekend, she could be moving to the intermediate nursery. She won't unless they have to though. All right, now I can't see straight, so I'm off to bed. Hope that whets some peoples' interests!

Still no news...

We still don't know what's wrong with Lily. She hadn't passed the barium yet, and they were still taking x-rays today, so maybe TOMORROW we will have some news on what her situation is. Today I got to do kangaroo care with her -- which is skin-to-skin contact. They basically put her in my shirt, wrapped it back around her and ... that's it. It's supposed to be really beneficial for preemies especially, so I'd like to do it as often as possible. She looked comfie too. Eric took the pictures JUST after she was put in there, so she hadn't found her spot yet. But he had to go feed Eve, so he couldn't get a picture of her when she was just about to come out. It was ADORABLE. Take my word for it! This picture is her getting settled. She isn't quite there yet, though. She ended up turned her head up toward my chin and grabbing my undershirt, which she was sort of sitting in ... in the photo album I'll post some more versions of this time with Lily.

Eve, as I mentioned, had Daddy feed her today! She actually took more bottle from him than any of the nurses. Like 10-15 mL or something like that. Still not a whole feed, but hey! Here is the little lady eating from her bottle. There are some CUTE shots of her afterward too, which I'll also put in the photo album. I'm going to add another video to the bottom of the page too because I needed one of calm, looking-around Eve like we have for Lily. Eve's nurse suggested today that I try holding Eve to the breast next feeding time and giv eher the chance to just get a feel for it, even though we know she won't be able to actually get much, if anything, from it. She said if I didn't do that, I could kangaroo her too. I think both girls could benefit from it. I sort of noticed when I was holding Lily that when she started to breath slower and get closer to her monitor alert settings, if I sped up my own breathing, she did too. It might have been coincidence, but I want to try it again. I'm a little happier today, after holding her, and seeing Eve eat fro the bottle. But I'm still quite worried about Lily at the same time. I'll be going back tomorrow and hopefully I'll find out something on her situation. We shall see.

And as a side note: We have a little boy named Jay in Lily's NICU who is going in to get a tracheotomy tomorrow afternoon. Just keep him in all your thoughts. He's a heck of a fighter, but everyone can use a little extra prayer. Includig his mom Chris and his grandparents. Thanks!

Still no news on Lily, GREAT news on Eve

Well, they were supposed to do the last X-ray of Lily's intestinal system tonight at 9 p.m. and by tomorrow, hopefully, we'll have an answer as to why she isn't digesting feeds and not going to the bathroom. They gave her the barium this morning and in one of the early x-rays the tech noticed some "interesting, extra loops in her upper intestines, near her stomache." But they didn't tell us anything, it didn't appear they had any blocks or anything. She was jostled often throughout the day, so she didn't get picked up by Eric or I today, or really touched much either. We wanted to minimize her stimulation. The resident watching over her DID say they don't believe she has necrotizing enterocolitis, which is GREAT becuase that is nasty business. BUT, they admitted that Lily's problem has them all stumped at the moment. They even asked me about her cords, which one was hers because one looked a little compromised from the pictures they were looking at. But I told her I don't know whose cord was whose, all I knew was at all the ultrasounds they did cord flow dopplers and those always looked fine and none of the doctors seemed concerned about them. SO, yeh, we have no idea what's up with her. The poor kid was tuckered out today and she had some apnea spells because of her full tummy and being flat for the x-rays. She was doing a few stopping spells when Eric and I were watching her, only for 5 seconds or so, and they she would catch herself. But it's scary to see the monitor read "0" respiratory rate and the oxygen saturation dropping...

We got some AWESOME NEWS on Eve, however. The order was signed off on today to move her to the intermediate care nursery, or the step-down nursery! AHHHHH...that's a step closer to home! We attempted a bottle feed at 6 p.m., and she was pretty awake and sucked and swallowed a bit, but VERY little. Maybe 5-10 mL of her like...40ish. She had one episode of heart rate dropping, O2 saturation dropping etc, but I pulled the bottle out and sat her up a bit more and she brought herself back out of it pretty quickly. But she didn't get her o2 saturation to a satisfactory point after that and keep it there, so we gave up the bottle feed and gave her the rest through her tube. I ended up putting her back in because I thought she was being overstimulating. I DID get to change her poopy diaper! EEWWW. But still, it was a first for me! I hadn't changed her diaper before. And I learned how to wrap her up in the blanket and take her out of hte incubator myself. It was cool. I felt good picking her up myself for the first time. I really can't wait until Lily is better and I can do the same with her. I'm SO hoping that whatever was ailing her just went away and when they try a feed she'll digest it, poop, etc. All on her own. She'll just...do it. And we'll never know why she didn't, but it will be behind us and we'll move on and wonder but be thankful. That's what I'm praying for right now! I'll try to post some pics on the photo album too. i think there are few more there now than last time. But I'll post one here too of Eve eating.

Upper GI...

Just a quick update. The doctors are doing an upper gastrointestinal tract test today. They gave Lily barium through her tube and they are going to periodically throughout the day take pictures of her to see where the barium has traveled to. I imagine, and I'm not a doctor, if the barium goes through her system without a hitch, there isn't a blockage to blame for her digestion troubles. I'm going up to the hospital as soon as Mom is ready so I can be there with her and be there when the doctors, hopefully, bring good news! And I want to try to feed Eve a bottle again today and see if she can get the hang of breathe, suck and swallow! Probably not right away, but hey, if she doesn't forget to breathe frequently throughout the feed I'll be happy!

But keep Lily in your thoughts, if you have a spare few, and we'll hold out hope that her system is clear and ready for digestion. I'll let you guys know as soon as I know when I get home. I might be staying in Albany tonight, so you might not hear from me until tomorrow. We'll see.

Cross your fingers and toes...

I'll start with the good news...

Eve is up to full feeds! She is still on the tube feeds, but they are trying her on bottle feeds too because that is what she has to master now. They took out her PICC line (IV type thingy) and she is only on a little O2 to keep her levels steady. They actually said today that she could possibly be moving to an intermediate care nursery if they decide to move someone there soon. That's great and definitely a step closer to being home.

While Eve still needs your support and prayers, Lily needs them more right now. Today, Lily threw up an ugly puddle of dark green, chunky stuff and it was no fun to see. The nurse showed the throw up to the residents who were on today and they came in and checked her bowel sounds and felt her tummy. The bowel sounds were good, the tummy was "nice and soft" but they still don't know what is wrong with her. She can't take any feedings by mouth and hasn't been able to for a while. She keeps on having green stuff come out of her. And she isn't pooping as far as I know without suppositories. I'm getting increasingly worried, naturally, and I would say Google is both a blessing and a curse. Other than THAT problem...she's PERFECT. Breathing awesome, awake and alert, peeing NOT a prob based on that lovely diaper I changed, and she doesn't appear to have any pain or stomache distention either. SO yeh, we're still in the dark about her digestion (lack thereof..) I was HOPING when I saw the vomit come up that perhaps that had been in there and needed to come out for her to start feeding normally. But I'm not sure. They are going to do "tests" on her and I'm probably going to go out of my mind worrying and wondering what is going on. I posted a new video of the little bugger below the posts. She is too cute and you'd never know looking at her that she is having problems. Please, pray for her.

On a side note, the girls are TWO WEEKS OLD now. And I went in for my two week check-up and all looks good. I actually weigh LESS than I did before getting pregnant. Don't ask how I managed that, but I'd say it's largely because I was almost all baby weight (and all that comes with babies...)

All right, off to bed because I think I want to spend most of the day at the hospital tomorrow to be with Lily and see what the results of the tests are and hopefully, God willing, we will get some good news.

A step forward, a step back

So goes the NICU rollercoaster! Eve was back on a little o2 help tonight when we visited her. She has on a nasal canulla, but luckily it's set on the lowest level possible. Her nurse said it isn't a huge deal, she just needed a little help. We tried, for the first time, to bottle feed her, which is wicked hard with an under four-pound preemie, but Eve wasn't having it. She would desat and her heartrate would drop and she'd spit the milk out, etc. SO, after a few rate drops, the nurse decided we'd go the tube route. Eve slept through the rest of the feeding. Thankfully, she seems to be tolerating feeds still. She is up to 22 mL of milk. Full feeds are considered 44 mL, so she is half-way there. Of course, they want the feeds all by bottle or Mommy before the kids go home. It was a bit scary when Eve's monitors went off when we were trying to feed her. The nurse just said, "What are you doing, kiddo? Catch yourself..." I guess the easiest way to explain what was happening is that Eve was "forgetting to breathe" when she was attempting to suck on thebottle. That would, naturally, drop the o2 levels and her heart rate went down from 150s to 70s. I'm trying not to think of that sort of thing happening frequently because it IS so scary. We'll keep praying she gets the hang of it and stops desats etc.

Lily was still breathing fine on her own, and wide awake when we arrived. She was tolerating formula they had been giving her today, which was nice. She might end up being like her Mom who apparently couldn't digest breast milk and needed pre-digested formula. They're going to try her on milk again tonight, but who knows if she will tolerate it. Eric and I both held her tonight. Him while she was being fed by tube and me afterward. I had to hold her propped up a bit, which was quite the arm exercise. Even though she's only 4 pounds 5 ounces or so, you're afraid to MOVE for fear of making their heart rate drop, or their breathing slow or speed up, it's like holding a glass ornament you're afriad of breaking! I'm sure it will get better the more we do it and when I'm not so sore still! Lily has been having apneas and bradycardias, which the nurse said are common with preemies, but she was being a good girl for the most part. She has spent some time on her tummy to help keep her tummy from getting large. They did a test to look at her bowels and it came back normal, so that's good. They are still giving her suppositories to make her go, but the nurse seemed to think it was all normal and nothing to worry about now.

I know it's only been 11 days since they were born, but it's been a LONG 11 days and when I think these kiddos could be in NICU for a total of 8 weeks, or even more, it's really daunting. Then again, they could suddenly turn around and come home in two weeks too. We'll hope for the latter, won't we!?