We need to buy a new vacuum. (If anyone wants to help, Sears gift certificates are great )

Though we thought we wouldn’t need one, we need a monitor. He’s in our bedroom, which is on the main floor – door always open, just a few feet away – but with the dishwasher going, or the washer downstairs (sometimes), the tv or microwave or anything, really… we have trouble hearing him.

Baby vomit is kinda scary. Not the vomit itself, but the process of vomiting. He did it earlier today for me… too much gas and out it *all* came… nose and everything. He didn’t even flinch! Just kinda sat there, it happened, and he kept sitting there like nothing had happened at all. I know tossing up breastmilk is supposed to be the easiest for them, but still. Scared me *way* more than him. (don’t worry, he’s not sick)

We cleaned the house up today. The counter is no longer overflowing with stuff, neither is the coffee table. Floor is swept, things are put away, dishes done, laundry done even! It feels good to be here again.

The gas is getting better, slowly. We really do think it’s the Poly-vi-sol that’s making him so uncomfortable. We’re going to try starting it up again tomorrow but at half the dose twice daily (what they’d been doing at the hospital). If things get worse again, we’ll lower/multiply it again. Ideally I’d like to not have to give it to him at all. I think it’s unnecessary.

Ken went grocery shopping today. He said it was really weird to be in the jeep without me. He’s not driven alone since Ethan was born. I was, I can admit, kinda scared to be left alone with Ethan. What if something happened? Y’know. However, Ken left right after feeding him, and he and I snuggled up and slept for an hour or so until he woke up hungry. He ate, and it was really nice to have to not worry about anything. Not about getting things done in time, not about what’s coming up next, not even about cleaning or cooking or anything. It was *our* time. I enjoyed myself thoroughly. Ken got home shortly after his feeding and we both agree that not having to drive 3-4 hrs every day is a HUGE weight off our shoulders.

We’ve discovered that, along with hating to have his diaper changed, he doesn’t like being laid down after eating. I wonder if a full tummy on his lower GI is part of the pain problem. I lay him down for a bit after his feed this afternoon and while he’d been calm and happy while I held him he was almost instantly unhappy and uncomfortable lying down. I held him for a bit longer and that helped for when I put him in his bassinet. We’ll have to ask Dr. Cooper tomorrow.

I wonder how much he weighs now.

Little update on how things are going…

Ethan sleeps most of the time. He has about 2 wide-awake and alert times during the day. Between 2-6 am for 2-3 hrs and the same in the pm. He’s sleeping well in his bassinet, though we’re going to need to pick up some flannel material to make some bigger sheets to swaddle him with. He’s eating every 2-2.5 hrs and taking more than the minimum 440mL/24hr (usually around 530mL). We’re interested to see how his weight changes on Monday (first appointment with his Ped.). Feedings are for 30 min maximum at whatever he’s willing to take (ranges from 25-60mL). He’s easy to tell when he’s hungry cause he does all the typical hungry baby stuff – he opens his mouth really wide, he roots, he brings his fists up to his mouth/chin, he looks around for boobs/bottles, he shakes his head back and forth (we asked in the NICU – most all babies do this “searching” for a nipple to latch). He’s been crying and drawing his legs up around his tummy, tensing and turning red with straining around feed times too. We thought it was gas, but he’s on Mylicon and that doesn’t seem to be helping much. We think it may just be hunger, but it may indeed be gas (he’s pretty tooty sometimes) and he needs a larger does of the Mylicon. We’ll bring it up Monday with Dr. Cooper. He’s also on Poly-vi-sol which may be making digestion hard since it’s got iron in it. It also may be the NeoSure we’re fortifying his milk with. It shouldn’t do that, but we’re going to try switching to another brand of preemie formula (when the free can arrives – they love giving away free stuff, don’t they?) to see if that helps. We didn’t want to, but we’re going to fortify (it’s very little – 3/4tsp/120mL – raises the calories from 20 – breastmilk – to 22) until he gains more weight. With as much as he’s been eating the past few days though on the ad lib schedule, he should be gaining well. He was discharged at 5lbs 13oz so we’ll see what his weight is on Monday (though with a different scale it may not be an accurate comparison).

We’re going to give him a bath today to help his tummy, and practice some belly massage to see if that’ll help. We’re also going to have some belly-time this afternoon so we can practice our head-lifting skillz. He’s pretty good already though, but practice makes perfect.

We slept pretty well last night – finally. We’re alternating feedings so we can each get some more sleep, though once Ken’s back to work we may be doing a 2-1 kinda thing.

A few thoughts:

Babies are hot! We fell asleep yesterday afternoon on the recliner with him on my chest and damn but I was sweaty after we woke up/moved! No wonder pregnant women are always hot!

Ethan is, as objectively as I can be, just adorable. I look at him, then at other babies in the nursery and now those in adverts for the zillion baby products that companies want me to buy, and he’s as cute as the photo-friendly babies. He’s like our own little Gerber baby (though his sensitive skin pimples do detract somewhat – I’m hoping the lack of tape on his face will help with that).

I need to shower.

Ethan has a little bit of diaper rash. It’s a small patch, and has happened since we started using baby wipes instead of the hospital “clean” cloths and water. We’re going to switch back to those for a while then try another brand of wipes. Sensitive skin indeed!

We’re home, and exhausted. We ended up rooming-in for an extra night and the “bed” was wretchedly uncomfortable (we’ve slept about 6 hrs in the past 2 nights). We did, however, get to bring our entire family home though. Our house is now a home. We’re going to bed.

YAY!

No time.
Gotta run!

…so if you call, please leave a message (else how would we know you called?).

Today was unexpected.

We went in and tried nursing to slightly more success than yesterday. He latched, but it didn’t last because he keeps closing his jaw (thus pushing everything out). Our nurse, bless her heart (she’s quite nice, but some of her comments have seemed… off), suggested that my nipples don’t stick out much and I should try to make them do that more to help him nurse. Well DUH! I’ve been trying… they don’t… that’s what the shield is for. (In her defence, she mentioned that I should work with the shield more until Ethan’s better at forming my breast into the shape it needs to be for his little mouth.) He sucked well on the shield, and got *some* milk. We stopped after 15 mins cause we still needed to feed him. I proceeded to piss off Ken by asking him to feed Ethan while I pumped. I had reason to pass him off, but he had reason to be pissed. We’ve kissed and made up though.

We had some spontaneous monitor training today. We’ve decided to play it safe and go with the monitor, even though neither of us thinks he needs it and I’ll be pretty darned surprise if it goes off on a genuine alarm (instead of the false alarms we’re expecting). We’ll only use it when we’re sleeping, likely… possibly if I can get a few household things done while he’s napping sometime. However, the only time he’s dropped within the alarm range in the past two weeks has been during feedings – and those don’t count. We have it anyways, and Lorraine said it was our choice so I’m wondering if we get to decide when we don’t need it, instead of the dr deciding. I’ll have to ask tomorrow.

The reason for tonight’s last minute monitor training is that we’re expecting thursday (maybe friday) to be discharge day!!! He fed all day today without tubing once! The tube was out, in fact, all day. If he can continue to bottle-only for the next few days and still gain weight, we’re in the clear. He’s been getting much better at bottling each day it seems, and even Ken and I can get a full bottle into him (with struggle at the end – but so do the nurses).

Along that vein, we’re going to be “rooming in” Wednesday night. They have a room, adjacent to our nursery, that’s entirely self-sufficient (bed, bathroom with shower) that you spend 12-24 hrs in taking care of your baby without nursing help. It’s supposed to simulate what caring for your special needs baby will be like at home. We’d hoped to avoid it, since we don’t think we need it, but it’s being strongly recommended. Good thing we’re both engrossed in books, because the tv stand is there but no tv. *shrug* Maybe it’s being fixed. The bed’s tiny (single) but we’ll manage. We’ll be sleeping most of the time anyways since we’re hoping to leave early thursday (Lorraine likes it that way so that we can get home, get settled, then still have time to call with any worries/questions/problems). Ken’s going to take all of Wednesday off because we’ll be baking all morning to get our “Thank You” present done for the unit. We’re making lots of things. Our goal is to make ch. chip oatmeal cookies, meringues, butter tart squares, gingersnaps and snickerdoodles. I’m hoping to get the butter tart squares and meringues done tomorrow so they have overnight to set further. The ch. chip cookies shouldn’t take me too long, and hopefully leave time for me to do laundry and pack our overnight stuff while Ken makes his gingersnaps and snickerdoodles. I’ll also need to cut out the fabric for the booties I want to make for Ethan for his going-home outfit. Hat’s done, mittens are done, booties and blanket are not (though the blanket is just a rectangle of fleece).

Oy, I need to get some rest!

Here’s your Moment of Ethan (and Ken).

Today went alright. Good and bad.

Good was Ethan. We swung by Babies’R'Us and picked up an Isis breast pump and a nipple shield to try. Had lunch and picked up a game at the mall too. He was tubeless again, which is nice to see. When we got back we tried the pump to get things flowing, then the shield to see if he’d latch. He did, and sucked some. I don’t know how much he got but it was in his mouth and the tip of the shield so I take that as encouraging. We had to stop because we had to leave enough time and energy for him to finish a full bottle as well (which took a lot of work, frustration, and time). That was the bad part too. By the end of his feeding I was so frustrated because it felt like I had to force him to eat (which I did because they can’t tube him after he’s eaten most of the bottle because he’d throw it all up). I hate doing it because he’s so tired and upset and does.not.want.to.eat. I literally have to force the nipple into his mouth and sometimes bend it so that milk will go into his mouth and he’ll swallow and start sucking for a bit. I hate doing it. It feels so wrong! It feels like we’re just making his feeding experiences into negative experiences. That’s very counter-productive, in my mind. Ken feels like this too. I don’t know what to do about it though. The sooner he feeds well all day, the sooner he comes home and we can take more time and take it more easily. We’ll still have to get him to eat it all, but perhaps we can do it without forcing him?

We left early to get groceries and supplies for baking. We’re going to bake a whole mess of cookies and squares for the nursing staff for Ethan’s discharge day.

I also learned how he reacts to me eating jalapeno peppers. I’m off spicy foods for the next… while.

The answer is… no. Not yet. But we’re *so* close!!

We chatted with Lorraine yesterday about how things are going. He’s had quite a step-up in his bottling skillz the past few days (yesterday and the day before he took 5 in a row! – though not always the whole bottle) and she’d like, instead of sending him home sooner with the tube option, to keep him a few extra days and see if he can master the bottle completely. We agree.

He’s also had practically no alarms the past few days, so it’s possible (still not likely, but possible) he may come home withOUT a monitor! She said she’d let us decide on that one, depending on how comfortable we were with having/not having it. We’re going to wait a few days and see how he does.

He had his eye exam yesterday and is “completely vascularized” (Ken thought he heard “almost” at the beginning of that statement though – so I’m not sure which) which means a big huge thumbs up from the Opthamologist. He’ll have a follow up exam in 4-6 wks, but otherwise we’re (almost?) clear of the ROP monster. *knock on wood* (just in case)

He’s going to be getting immunizations the next two days. They’ll give him 2 (maybe 3) shots per day with some tylenol to dull the pain. He’ll be getting the Pneumococcal Conjugate vaccine, Polio vaccine, Diphtheria Tetanus Pertussis vaccine and Hepatitis B vaccine. He may or may not also get the first of his monthly RSV shots before he’s discharged (we’re not sure yet).

He’s supposed to have his MRI done today. It was supposed to be done this week and kept getting put off and put off. We saw a note, though, from Lorraine saying he “must get MRI done friday!!!” The MRI is a more accurate look at his brain than the ultrasounds, and now that he’s a big boy they can take him down to the 2nd floor to do it (ultrasounds are done at bedside).

So it’s looking like discharge might be Monday or Tuesday of next week. Lorraine wanted to see how he did over the next few days with his feedings, and we want to see how he does with alarms. They want us to room-in before we go (we’d not wanted to since it’ll be so uncomfortable with us and we’re very comfortable with his care), so we’ll see how that goes.

Last night we finally tried on the outfit I made for him. It’s *way* too small now, but at least we have a picture or two. It’ll go into a memory box of “you were once *this* tiny!” stuff. Now remember, when I first designed it, it was supposed to be about 2″ too long (to allow room to grow). He grew! I’m starting to think the booties I’ve made one of (cause they look *huge*) are going to be the right size afterall (for discharge). I’m going to take the one in tonight and see how it fits him.

Otherwise there’s not much else to say. I have to run to the post office again because there’s a package waiting for us – we have no idea from whom though because the writing is so messy on the card. Mo lo something? *shrug* we’ll see. The weather’s also nice (it’s been cloudy and rainy the past few days) so I think today we may do our video diary of a day in the life of NICU parents. We’d planned on sending a copy up to my Dad for his birthday, but it doesn’t sound like they’ll be able to hook up a VCR to his TV. Lea’s looking into that though. Speaking of Dad, he’s doing alright. He’s been hallucinating and they think it’s because his sodium level is really low. They upped that a few days ago (when I last talked to Lea/Dad) so hopefully that’s working. It sounds like when we go up at Christmas that Dad’s not going to be able to touch Ethan, and unless he can get a day-pass out of the hospital, he can’t see him either. It has to do with a staph bacterial infection he picked up at the hospital called MRSA. It’s not a threat to healthy people, but Ethan’s not going to fit into that category for a while yet. They test Dad weekly, though, to see if it’s cleared up (they don’t treat it with antibiotics because it’s starting to become resistant to them) or not. Hopefully it will. He’s prepared himself, though, for the possibility of not being able to touch Ethan. We’ll have to see closer to Christmas how that’ll go.

Mkay, there’s lots to inform so bear with me.

I talked with Lorraine this morning. Ethan’s doing well. So far today he’s taken 3 feeds in a row. 5am was about half the bottle, he was wide awake at 8 so Margaret tried again and he took the whole thing, and I guess he took one at 11 too (don’t know how well, but it’s still progress). His feeds have gone up to 52ml now. Lorraine’s upping them so agressively because she’d really like him to go home on as little calorie fortifiers as possible. We totally support that! She had a long chat with Dr. Cooper (Ethan’s to-be-Pediatrician) who’s said she’ll be pleased to have Ethan as a patient. I expect they talked about lots of things, one of which being that Ethan may come home still using feeding tubes. I’m sure if she had any doubts about that she’d have mentioned it. His MRI is scheduled for this week, but Lorraine still didn’t know exactly when (not a big deal). He’s also due to have another eye appointment tomorrow and Ken and I think he’ll show a lot of developmental improvement. He now looks directly at us when he hears us, and looks in our direction even if he can’t see us (if we’re too far away or behind him). We should, likely, be signing the forms for Ethan’s first set of immunizations tomorrow. They have to dig around to find the forms (likely because they don’t, as often, have a baby being discharged old enough to get their first set of shots).

Peek-a-Boo!

Last night before shift-change (when it’s usually quiet and all the nurses are waiting for the time to pass) we were chatting with the nurses in our nursery (2) about Ethan’s care when he comes home. We learned quite a bit. We learned that until he’s 7lbs (normal newborn weight) he’s too small for the sling. I’ve discussed this with the sling and she’s going to quietly wait for him – in the closet. We learned that infant head supports like this jeopardize the safety of car seats. We’re going to be taking it out of Ethan’s before he comes home. We can still use it, however, in his swing.

The really great info I have is what happened yesterday. The first yippy happened when, after his 5pm feed, he was asleep in my arms. Dreaming, and making all sorts of faces. Some of which were smiles and some included laughter. What a wonderful sound!! I also found that, at least on one side, he’s got a dimple in his cheek!! I don’t know if it’ll last his whole life or not, but it’s there!

The second yippy happened later, after shift-change. Caroline (night nurse – very nice) mentioned that last night was a bath night. I asked if they ever actually bath the babies in a tub, as opposed to just sponge baths (which we’ve done already with him). Yes, they do, would we like to? Silly question! So we had our first, proper bath last night. We stripped him down and pulled off all his leads and his feeding tube. If you look carefully, you can see the rings from the leads on his chest and the tape moustache mark. He, apparently, has very sensitive skin (which would explain the pimples on his face). Ethan loved it! Even though there was a florescent light right above him (we bathed him on the counter next to the sink and the cabinets above have under-cabinet florescent lighting – and he generally hates bright lights) he was quiet as a mouse, wide eyed, and fairly still (instead of squirming all over the place like he does when he’s upset). When we first put him in he made quite a few air bubbles (hehe) and then settled in and enjoyed himself. He was pretty mad once we took him out and he got cold for a brief second. But quiet and happy again afterwards as he snuggled with Daddy and took his feed (tube – since we didn’t want to over-stress him).

All in all, yesterday was a pretty stellar day for this Helberg family.

I would have written this earlier, directly after Lorraine called, but we were rushed for time and needed to get going.

She said his caffeine is only “therapeutic” now (he’s outgrown his dosage) so they’re going to stop giving it to him and see how he does. Cross your fingers tightly for this one, since if he does well without it then we have a good chance of him coming home withOUT a monitor. This would be a very good thing. Monitor’s constantly have false-alarms (they’re overly sensitive) and they’re literally as loud as your smoke detector.

She’s upped his feeds again, to 48ml, and lowered his fortifier calories to 22cal (it was at 24, regular breastmilk is at 20). The closer to breastmilk the better. She’s also said that we can go ahead and try breastfeeding now. Full’o'milk nursing, instead of the non-nutritive stuff. Now that he’s bottling better perhaps we’ll have a more successful time getting some latch-on-action. If not, that’s alright, but I’m hopeful.

Tonight he took 41ml from us by bottle. It’s an all new parental record, so we were pretty excited.

He’s going to have an MRI this week (better results than a head ultrasound) to check on the progress of his hemorrhage and see if any signs of PVL (Periventricular Leukomalacia) have developed. Again, cross those fingers.

He’s going to have his eyes checked again by the opthamologist this thursday. So far his retinas have been “immature” and they haven’t been able to tell if he has any signs of ROP (Retinopathy of Prematurity). He’s been really good with directing his eyes and looking directly at Ken or myself when we talk to him, so I’m hoping they’ll give a definitive answer on the ROP.

The best news of all is that Lorraine wants to “discuss our discharge plans” this week. She wouldn’t say for certain, but it sounds like perhaps we can bring Ethan home next weekend!! Don’t hold me to that, yet, because it’s far from certain, but things are definately pointing in that direction. Excited doesn’t even come close to how I feel.

And now… your moment of Ethan.

We got, in the mail, some more statements from our insurance company last night. They come every so often, telling us how much money is being spent (and shouldn’t we be grateful!) and that it’s being covered by our plan. Last night’s, however, said they weren’t going to cover the surgery Ethan had (though we had confirmation at the time from the surgical staff that it’d be covered) and that we will be owing somewhere to the tune of $4500. They also mentioned, previously, that they weren’t going to cover a few of his x-rays (that were under my name, for some reason), though they’re covering the same kind of x-ray earlier in that same week (he had lots of them to check his lung status). We’re talking to the insurance people about it, and we’ll see if we owe anything (which we shouldn’t – I expect this is just a mix-up). The stunning thing, though, was we got a statement from the hospital’s expenses for Ethan’s first month. The hospital is charging our insurance company approximately $250K for it (none of which is being charged to us).

*falls over stunned*

Granted, I know they charge ins companies more than they would if it were people paying out of pocket, but still… yikes! Thank goodness for health insurance!!