Rough nights...

Well, after 2 very successful nights, we've had some very rough nights. I finally figured out that Gretta's crabbiness in the evenings and during dinner was really her asking to go to bed earlier. I started putting her down around 6pm and she's much happier! Once she's down, I'm able to get dinner with Emma Kate and deal with her hook-up and bath easier, and getting her to bed is so much easier. The first two nights I tried this, Emma Kate also had pretty good nights, just waking maybe once needing consoling, and then a couple times where she settled quickly on her own. But man, the last two nights have been horrendous. She's definitely got night terrors- she wakes up (sometimes as often as every 30 minutes... for hours) and cries, screams, flails around in the bed, and is seemingly inconsolable. Trying to help seems to make it worse, and doing nothing (unfortunately) also makes it worse. It's like there's nothing we can do to make it better. I had a night like that by myself, and it was emotionally and physically exhausting. Last night seemed worse, and it was just incredibly frustrating to be so helpless. The poor thing got so worked up that she started coughing and ended up throwing up in the bed. Of course, while she's throwing up, she's still sort of flailing around, and it was next to impossible to prevent a huge mess. It was awful. Just awful. I feel so horrible for her. I guess the theory is that these kids don't really know what's going on, and they don't remember it when they wake up, but still, you just want to make it all better!

So, tired Mommy and Daddy dragged the girls into town for Gretta's 4 month well-baby checkup (this is the first time her pediatrician has officially seen her as a patient, we've been seeing out-of town docs so far). She's doing awesome, and a lot better than he was anticipating, considering how she spent the first 3 1/2 months of her life! He was really impressed at how strong she was, pushing up, and almost doing a bit of an army-crawl across the table. He figured she had been held so much of her life that these things may be delayed, so he was really happy she was so strong! She weighs 14 lbs 9oz, and is about 25in long, putting her in the 75th percentiles I think. The way the morning worked out, she was supposed to have slept on the way into town, but she never did fall asleep... then she was wide awake through her exams and our discussions about how Emma Kate was doing, then she finally fell asleep towards the end. She had about a 10 minute nap before waking up to get an oral vaccine and an injection! Poor little girl, she was NOT a happy camper! I felt so sad for her, just breaks my heart. But we are relieved that she is so healthy and progressing so well! The doctor was also really pleased to see Emma Kate at her best so far, and after listening to her chest, he said she sounds just about normal! (*almost* normal) So that was great too. I got a lot of great pictures today and will hopefully post them soon, we've been so busy trying to get so much done around here that it's hard to find the time, but it will happen soon!!!

Getting settled in

Well, we seem to be finally settling back in at home, after 2 weeks here! With some help from Nana, we were able to clean just about everything in the house except for vacuuming upstairs, and about 90% of the hospital stuff and new items are sorted and put away! It feels so much better to finally have regained a little organization (well, as much as you can have with a toddler and a baby in the house I guess). We've had some issues with Emma Kate's sleeping throughout this whole ordeal, and it has gotten a little bit better since being home. She's still not quite back to normal (she was a great sleeper prior to this happening) but she's doing better- every few nights she has a "good" night where she only wakes 3 or 4 times crying, and only some of them require soothing. Last night she woke at about 9:30 crying pretty bad and somewhat inconsolable, but after that, she woke at 10, 11, and 12 with a little fuss and settled easily on her own. From then on, it seemed quiet and she even tolerated a diaper change around 4am. She woke up at about 6:45 in a pretty good mood and ready to go! It's good that she will sit in the bed and play or talk with me until it's time for her toooobs to come off, and then it's pretty straightforward after that.

Emma Kate is doing well with her nutrition- she has gained weight (even over just the last week she gained 0.26kg) and I am waiting to hear from her GI doctor about reducing her calories in the TPN again- if we continue doing well, hopefully she will be off it in another 2 weeks or so. We're so ready to have her back to normal again- I'm afraid she's gaining too much too quickly (think OCD in horses...) and she's already outgrown about 75% of her fall/winter wardrobe we bought just a couple weeks before she went into the hospital! Her vocabulary is growing by the day and she will occasionally sit and talk to herself and just spout off a bunch of her words like she's having a conversation. Also, I just noticed this morning while brushing her teeth that she is getting both of her bottom second premolars!! Holy cow!

Baby Gretta has a checkup on Monday and we're anxious to see just how very much she has grown... she's outgrown much of her wardrobe as well, and all the old clothes from Emma Kate are getting into summer items for the next size bigger! So much for reusing all her clothes again, this little one is growing by leaps and bounds! She has become quite chatty, is grabbing for toys and holding them to look at, she watches Emma Kate's reading videos, and is generally a jolly little elf! She does still have her moments of being a pterydactyl, but we're trying an early bedtime for her and that seems to make the evenings much better for everyone involved!

Monday night

It's been soooo busy around here since coming home- I wanted to update more often but it just hasn't happened! I came across some pictures from back before we came home as well as some since we've been back, so here are the good ones-

Emma Kate visiting with Duncan, the therapy dog. She was a little shy around him, probably more shy of the handler than the actual dog, but still fun to visit!

Giving a ride to her doll in the pink wagon, it made a good transition for her from riding in her own wagon all the time in the hospital to walking and pulling someone else in the little wagon
This is as close as we will ever come to having our own pigs
Playing in the playroom down the hall from our room at RMH
See, that double chin is a recent thing- it's just starting here... I think it's that darned IV nutrition doing weird things... what the heck do you expect when you're running glucose and soybean oil right into the vein?!?!
Gretta resting with PopPop a few days after the dreaded bug
Wearing Mimi's slippers, so silly
Making sure the baby stays happy
Here we are just a few days after coming home, breaking out the stroller for a walk! It was a bit on the chilly side, but worth it to get out in the fresh air!

Baby Gretta sitting up on the sofa, gotta find the same picture of Emma Kate to compare... this baby is soooo big!
Having fun in her pop up tent
Gretta found her toes!!!
What else do you do with the holes in the top???
We broke out the jumparoo- it's the best toy ever!
Exhausted after all the fun jumping (well, not so much jumping... her toes don't quite make it far enough to the floor yet...)
Emma Kate showing off all the features of the jumparoo

Sweetness...
The best way to keep your head warm in the winter
Yes... Emma Kate couldn't resist it. She LOVES the jumparoo! Can't believe this thing is still standing after the abuse she gave it the other day... :D
We're all doing well and finally getting to sort through stuff and clean the house bit by bit. Vacuuming was awesome. Even cleaned a bathroom today. Emma Kate's little noisy breathing she's had for a week or so has finally seemed to go away, hopefully just another remnant of this upper respiratory thing that I seem to be fighting STILL. We'll update more later!

Quick update

Just a little note, gotta make use of time that both girls are asleep!! It practically never happens... Emma Kate had a cap and dressing change this morning, and she handled it really well- she had a lot of anxiety about the discomfort of pulling the dressing off, but once it was off, she recovered pretty fast and was fine again. What a relief to be done with it for another week. It's just so god awful. Also had labs drawn to make sure everything is still ok. We went into Roanoke to meet with the pediatric GI doctor we had seen briefly when Emma Kate's TP tube got vomited up right before we headed back down to Wake Forest in December, he's going to help us manage the PPN and get her off of it as quickly as she can manage without it. He seemed pretty pleased with how she has been doing, and is reducing her calories for the next shipment. We also get to reduce the hours she's hooked up, so she'll only be on it for 12 hours! That's just a little before bed and then off when she wakes up! It will be so much more manageable!

Emma Kate is still making some noise with her breathing, but I still think it's just gunk she's not fully clearing with a cough. She's gotten a little tired of coughing "on command" and when she does follow through with it, it's usually a weak little "pretend" cough that doesn't do anything. We spoke to Dr. Rutter's nurse, and we're going to watch her for another couple of days. My sore throat and cough have gotten better just recently, and I'm hoping hers will do the same.

Daddy goes to work again tomorrow, and we're hoping for a nice weather day so all of us girls can get out and make some good ol' vitamin D!

Settling in at home

We've been home for a few days now and are still trying to settle into a routine- We're still having to hook Emma Kate up to her PPN (partial parentral nutrition now, since we've reduced the calories from her total requirement...) around 3 or 4pm, which means we have to have someone specifically dedicated to following her around on her leash after that, until she goes to bed. We've got some friends to help out with those hours for a couple of days that Greg works, but what we can't necessarily have help for is the nighttime hours- Emma Kate still requires some soothing in the night, and she's currently on a pretty strong "Mommy" kick. I'm trying to manage keeping Gretta asleep and help Emma get back to sleep when she gets upset. So far the nights have been pretty rough and sleepless for us all (well, maybe Gretta still gets some good sleep...) but last night was actually pretty good for Emma Kate- she woke several times and either moaned, cried, or called out for Mommy but each one lasted only a couple seconds before she was back to sleep on her own again. Of course, every time she does it, we wake up and get ready to crawl in with her, but each time she was quiet again before we climbed in with her. (Sometimes it seems that we disturb her more by crawling in, so if it's not necessary, it's probably best that we just stay out) Around 5am, she got upset and it got worse instead of better, so we had to intervene, and she was pretty restless until she decided she wanted to get up around 6am.

We had a somewhat productive morning in the house, starting to sift through boxes and throw out trash and such, but I feel like we hardly made a dent- this house is still just a total wreck. It was very satisfying to accomplish a little bit though! After lunch, we headed into town- I went ahead and got checked out for this upper respiratory thing I've been dealing with for over a week now- the huge coughs at night are also keeping everyone awake at times, so I figured I needed to make sure an antibiotic wasn't in order. Just ended up with Flonase and some weird type of cough suppressant that I'm not quite comfortable using without some research first. Then we went in to see Emma Kate's doctor- she's had a respiratory thing going on for about the same period of time, and again, I didn't want her to go without treatment if she needed something else. She's had a big reduction in her nasal discharge over the last few days, but her breathing has become raspy again, like she needs to cough really hard to clear some junk. She will cough for us, but it's usually a little one and if it clears the noise, it comes back shortly after. Didn't seem to need any antibiotics, but we're going to continue her ciprodex nebulizer for a few extra days to be sure the granulation tissue isn't coming back and causing problems. It's a little disconcerting to have had her breathing so silently for a couple weeks, and now to be making all this wet noise when she breaths. Hopefully we're at the end of the run for this respiratory funk and she'll start quieting down again soon.

Tomorrow we have a cap/dressing change on Emma Kate's PICC line (fun. fun.) and will go in to see the GI folks in Roanoke in the afternoon. Hopefully we'll get a further reduction in her calories or possibly cut back the hours the PPN is running so we no longer have to chase her around in the evenings. Seriously, it's really hard to keep up with her sometimes, and it definitely puts a cramp in her independence. Keep your fingers crossed for us!

Gretta is doing great, chubby as ever, and mostly a jolly little elf. Except when we're in the car that is. I can't believe that both of our girls are so upset by car rides as babies. It makes things very uncomfortable for sure! She's getting so strong, sits well with a little propping up, and is grabbing at toys. She's having fun handling some infant toys and crinkle books, and we even set up the jumparoo for her the other day, and she has a blast in it! Plus, Emma Kate loves to show her all the features and how they work. She even got in it several times the other day and really gave those springs a workout! I can't believe Gretta is already pretty darn snug in her cloth diapers, and seems not so far off from wearing the ones that Emma Kate is about to bust out of as well. These girls have done such a lot of growing over the last 3 1/2 months! We're going through all the clothes at a ridiculous pace too, it's just amazing! And Emma Kate's vocabulary is taking off like a rocket all of a sudden- she's learning new words left and right, and the thing I think is hilarious is that she has always called Sophie (one of the cats) Fhoo fhoo- just recently she started saying it much more similar to Sophie, and now she has decided (because we so often call her Sophia Maria) that she will only call her MARIA! She says it with such enthusiasm it's hilarious.

These girls are just so amazing, how empty our lives would be without them!!! More pictures and possibly video next time I have a few minutes to post!

WE ARE HOME!!!!

Can't believe I finally get to post this... we made it home!! (And the even bigger joy is the fact that I can stress over things other than whether or not Emma Kate will be able to take her next breath, or which of a bazillion medications is due next.) We had a long, stressful morning finishing up the packing and getting the room clean- it was especially difficult because the TPN delivery the day before came so late that we hooked Emma Kate up really late... which translates to a late morning disconnect. I think it was around 10am that we were finally able to unhook her and no longer had to have one person dedicated to chasing her around on her "leash." We finally got everything in the cars (thank goodness it worked out to have a second car available and additional help getting home!) and we headed out. It was a bit of a slow start, having to stop to nurse Gretta after only about an hour, but it was good to finally be making progress towards home. Emma Kate did great, aside from about a million chants of "all done" but little Gretta was not a good traveller at all... she had 3 or 4 naps of about 30 minutes each, and for all but one we woke her up with our uncontrollable coughing... argh! About half the trip was spent screaching and the other half was spent asleep or content. It was difficult to say the least. That little girl just does NOT like being in the car! I even ended up riding in the back to keep the girls occupied and there was very little I could do to make Gretta happy. We stopped 3 times along the way, and it seemed to be enough to make Emma Kate happy just to get out of the car (it was frigid!) and walk around, stomping some snow for a few minutes. She really did well.

When we finally arrived home, Emma Kate was soooo excited to see the house and know that Daddy and the kitties were inside! She ended up staying up quite late, she was so happy playing with her toys and opening a few gifts that were waiting here for her. We set up the room to allow me to sleep in the bed with Gretta and Greg to sleep with Emma Kate on the air mattress on the floor. She had a great night, seemed to sleep pretty soundly as far as her nights go! Greg had to get up at 4:30am to get ready for work and I climbed in with Emma Kate and loved a little cuddle time. She even "slept in" till almost 7am and woke up well, which is always so wonderful!

Emma Kate has settled right in, loving her vacuum, doing laundry, playing with a new little dollhouse, loving on the kitties, and helping with Gretta. She's still got quite a cough from this respiratory thing we're all fighting off, and I can't wait until she clears it and has that wonderfully silent breathing again- what a blessing that is. I pulled out the video camera to record her talking on the phone, pretending to call Daddy and saying "Daddy........ home......dinner" as if telling him dinner was ready- it was too precious! When I went to replay it for her (she loves to watch her movies) I was reminded that I had actually recorded her breathing the day we took her to the ED on Halloween. It was really scary to see her breathing that hard again and I am so incredibly thankful that we don't have to go through that any more. How terrifying.

We are set up here at home to continue her TPN/lipids, and have a home health nurse coming weekly to pull blood and change her PICC dressing. We're going to be working with a local pediatric GI doctor here to manage her TPN and feeding, and we will meet with his office on Wednesday. We're hoping that he will be able to arrange things so that we don't have to run any TPN while Emma Kate is awake, which will make life so so so much easier. It's just so hard to have to have one dedicated person to chase her around with the pack of fluids and pumps when she is hooked up. It would be much easier if she was big enough to carry it herself! Until then, we're still working on eating eating eating and drinking drinking drinking...

The weather was nice enough today for us to get out for a nice walk with the girls for the maiden voyage of our double stroller, it was wonderful to get out in the (chilly) fresh air and to walk! We're looking forward to even warmer weather this weekend and to be able to get out even more!

It's WONDERFUL to be home!!!!! And so wonderful to feel secure about Emma Kate's airway!

Wednesday evening

Well, we couldn't resist yet another trip to the aquarium yesterday, and I swear Emma Kate enjoyed it as much as she did the first time! She just has a blast there and continues to talk about it through the rest of the day and well into the next. She's really fond of what she calls "Big Mike" the alligator, but more in concept than actually sitting there and marveling at him. :) Just loves the frog bog too- so much fun!

Her scoping was this morning, and everything looks much the same as it did the last time- just that same little piece of granulation tissue reformed, otherwise pretty "boring" in there, which we love. The piece was removed again, and we're going to nebulize some ciprodex for a few days (hopefully this won't cause too much drama) and see if it will keep it reduced. We'll be back March 15th for another scope to see how things are progressing. So...... (drumroll) it seems Mimi got her birthday wish, and we are going to attempt to go home!!! After some really painful issues dealing with the GI folks and arranging for her PPN/lipids, we look like we're all set up to continue this at home with some pediatric GI guys in Roanoke supervising. We immediately started packing things up but it seems there's no bottom to the bucket- we constantly find more and more stuff to pack and organize and clean. I guess the one upside to having gotten her PPN/lipids delivered so late today is that it will force us to wait until at least 9am before we can leave (we can not take the pumps with us so we have to travel in her window time) so at least we will have a few hours to finish up in the morning. So hopefully tomorrow night we will be settled back in at home in Virginia! It just seems so surreal to think of being at home and comfortable... hopefully Emma Kate will settle right in and have an easier time at night being back in that environment, although it has been so long since she has been home, she might feel like it's just another stressful change... I just hope it will be an easy transition for her. Now just to get everything shoved into the cars and actually survive the long drive home... We are thrilled to say the least!

Monday morning catch-up

Well, there's a good reason I haven't updated in several days- Friday evening, the stomach bug claimed PopPop... and knocked him fully out of commission. Just mere hours later, Mimi was in the same boat, and really hit hard. I managed to fend for myself and the two girls through the night (thank goodness it was overnight and the babies slept through the time that would have been most difficult to manage them!) and tried to be low-maintenance all day Saturday. Thankfully, by Sunday, they were both up and moving around and eating a bit, although Mimi is still not quite fully recovered and gets worn out easily still. Hopefully another quiet day will help, but it's hard for anyone to get much rest during the day with these two little ones to take care of! :)

Emma Kate is doing great and is getting harder and harder to keep up with- especially when she has her toooobs hooked up. Luckily she gets hooked up later in the day now (around 3:30pm) so we only have several hours to manage them before she goes to bed anyway. But it really does make it difficult to do anything other than follow her around- it's not like she wants to just stand by your side while you prepare some food for her or get a drink or anything... She's been a little clumsy lately and seems to be hitting her poor head on everything from the floor to the wall to the table in the kitchen! Don't know if she's still just getting her bearings or what, but that poor little noggin has taken a beating. Both little girls have had some snots for the last several days or so- not constantly running, but goopy sneezes mostly. It certainly hasn't slowed Emma Kate down, but hopefully it will not hinder our scoping scheduled for Wednesday morning- we're hoping that is going to provide our ticket out of here!!! We don't want to delay it! We're all having a little bit of upper respiratory irritation this morning, probably the same thing the girls have been dealing with. Just one more sickness before we leave...

We're still working out details of going home on TPN/lipids. I'm hoping to talk to the GI department today and see if we can knock her calories back again, since we've sort of stalled out on her appetite again. It would be great to have a bigger window too, how nice it would be to only have her hooked up for a couple hours before bed and overnight... She still has issues with swallowing liquids (even the honey thickened water makes her choke still, so we have to make it extra thick) but she seems to be doing well with purred foods pretty consistently. She even ate 1/2 of a cheddar cracker with peanut butter the other day- that was momentous! But yet she seems to choke on oatmeal... doesn't make a lot of sense. It's been very frustrating to find high calorie healthy foods to get in her- she will only take 1-2 ounces max in a sitting, and sometimes that's a bit of a struggle even. Most baby foods are 40-70 calories in about a 3-4oz serving, so you see my dilemma, right?? I'm still working on her calorie counts for the last week to see how she's doing- looks like we are at about 300-350cal/day on a really good day right now. It's all a bit of a guess though... I mean really, what is the caloric content of 5 cheerios anyway??? Or one slice of banana??? And she really just wants to drink 0-calorie water instead of the 355calorie/8oz Boost drink we have for her. Argh.

Emma and the laundry

Here is Emma doing the laundry at RMH. Our room is by the stroller in the back. Further down the hallway is our kitchen and behind daddy taking the picture is the playroom.

Ok, buckle in for some picture updates! Again, I managed to load them in backwards order...

Here's Gretta all dressed up and ready to go! (Our friend Catherine made the girls knit hats, and Mimi grabbed Emma's for Gretta, but it was sooo cute! She looked like a little 20's flapper)

Gretta with PopPop
Either that scale is waaaay off, or that sweater is really really heavy!! :)
Shopping- Emma Kate has always enjoyed browsing stores and has been so good about looking at things and then putting them back, never asking to take anything home. Well, today I found this little toy like one she had so enjoyed in the hospital, and I told her to take it to the counter so we could buy it. Just mere seconds later, she said "buy-it!" several times... uh oh!
She got such a kick out of the frog bog at the aquarium
Now THAT's a happy baby... :)
Arts and crafts time- RMH has a fully stocked and incredible art room- it is a blast for adults too!
Reading with Aunt Val
The girls hanging out
Elephants!!
Emma Kate in front of PINGU! I swear, it was him!!!
Out at the zoo
Swimming polar bear- these things are HUGE!! She was going around and around in the current, splashing backwards into the water
Hiding in the tunnel
Our little lost polar bear baby has found its mother! Good thing there was some mighty thick plexiglass between them though...
Kira and Gretta

Emma Kate trying out all the rockers

Hiding...
Puppet show!
Hiding in "kitty jail"
And... you guessed it, hiding! (This time- underNEATH!)
And yes, again, HIDING!
Safari craft time, putting the nose on the monkey
Pimp daddy squared
Emma Kate's new faboo look
Chillin' with Ronald
Getting ready to climb the wall
Showing off her new hat with Aunt Val and Gretta
Beautiful girls Kira and Gretta
Emma Kate getting her Elmo mailbox all set and ready to go for a ride in the car
Having fun with Uncle Chris