Current Tally

Our current tallies in the last week

Ear infections...2
Colds...4
Strep Throat...2
Trips to the pediatrician...5
Trips to urgent care...1
Miles driven on previous trips...440
Hours of sleep for me & Richard...-100

All that said, I think we're all on the mend. Avery still has a runny nose but it is no longer a faucet! Lily is drinking her bottles again so I think her throat isn't scratchy anymore. And little Zoe is now on her third antibiotic, she had a reaction to the first one, then threw up the second one, so we're trying a third. So far so good. Fingers crossed we'll stay out of the hospital and everyone will be back to normal this week.

Finally some videos

Okay I took some expert blogging advice from my good friend Kara a.k.a. McTriplet Mommy on how to make these videos work. Can you see my precious little babies? I have to tell you that today - despite the four colds, two ear infections, feeding issues, and general sleep deprivation in our household I had a moment of sheer bliss when I saw our little Zo-Zo "chewing" for her nurse. It was the kind of joy that overtakes your body, you feel it from the top of your head to the tip of your toes. And I just keep thinking about this little 2 minute moment and that sense of joy keeps coming back and back and back. Isn't it incredible how these little people that WE create can make you feel something so powerfully?

All three of the girls have had moments like this for me lately - especially Zoe because it's like she's decided to hit these developmental milestones one right after the other...she rolled over all by herself this week and now we can't stop her she rolls from one end of the playroom to the other and back again. The night before I saw her roll over by herself she was very restless just rolling side to side, up every hour. I now think it was like she knew she could do this and she was so excited she couldn't wait to show me in the morning. Sure enough I had all three of them in the nursery getting the girls dressed, diapered and hair brushed. I was working on putting Lily's diaper on as she did some move from Cirque du Soleil, and I happened to glance down to my right and there was Zoe on her tummy. It was almost like the time that I walked into her room at the hospital and walked right by her bed to head for the sink to wash up. I got halfway to the sink and stopped and went back to her bed, I looked at her, it was oddly silent in her room. This was odd because at the time she was on bubble CPAP (the step between ventilator and nasal canula) and the bubble CPAP always makes a loud bubbling noise (like a pot of boiling water). I looked at her, saw that she had a canula in and not the mass of tubing that is CPAP and I had to get a nurse to confirm what I was seeing, that she was indeed on the canula. Anyway, my very long winded point is that I did a double take. I saw her, went back to Lily who now I think was trying to mimic the performers and climb up the side of her crib upside down (not really, but sometimes it feels like this) as i try to diaper cream her tiny tush and fasten a diaper around her teeny tiny waist, I think to myself, I know I didn't put Zoe on her belly...OMG she rolled over she rolled over she rolled over!!! I all but drop Lily (diaper cream everywhere all over her legs and feet by now) and practically do a cartwheel in the middle of the nursery. Then she rolls back to her back and then she does it again, she does it over and over....and hasn't really stopped. I think if I let her she could roll from one end of the house and back as long as there was something in her sight that she wanted. I am constantly amazed by this little girl. This child who one year ago today had just had her PDA surgery and was completely snowed on norcuron, nebutol, fentanyl, and probably ativan and was so bloated from fluid retention - we were all praying she'd make it through the night and be one more day towards coming home, one day. Well....here she is!!! WOOOHOOO!!!

I have to say that Avery just makes me laugh 'cause she's so mischievous, I didn't know a one year old little girl could be so spunky. She is so cute when we "turn them loose" at nighttime to go back through the "forbidden living room" to get to the bathroom for bath time, she and Lily both shriek with joy and their little tushies just shake side to side as they crawl as fast as they can...but...they always stop a few times along the way to make sure you're following them or better yet chasing them. Avery has also discovered the dog's water dish and the electrical outlets. Most of the outlets are covered but sometimes we forget to cover one back up after doing Zoe's nebulizer and she'll crawl over towards it, stop about a foot away, arm outstretched and look over her shoulder as if to say "yeah, I'm gonna do it are you going to try and stop me". By far the funniest thing she does is when she imitates Zoe. Zoe has a cough b/c of all the gunk in her lungs (it kind of sounds like an old lady who smokes) and it's especially bad now since she's got a cold, but this morning Avery was on the bed with me and I was getting ready to change Zoe's diaper (she's in a co-sleeper next to our bed). Well Zoe had a terrible coughing fit which of course I responded to with "oh poor baby" pats on the back, etc...to which Avery looked at me and went "cough, cough" (not sure how to actually write the way it sounded, but you get the point) so I said "oh poor baby" and then she smiled and did it again so I imitated her and she did it again. Too cute!

Lily, oh Lily...our little daydreamer. Sometimes I wonder if she needs me. Isn't that a terrible thing to wonder as a mother? But it's like she's kind of in her own little world most of the time and doesn't require me like Avery does. I admit that I am an avid TIVOer of "Jon and Kate Plus 8" and Kate said something the other night about how the kids like going to the doctor because it means they get special alone time with Mommy. So i had to take Lily in to the ped on Tues b/c of her cold and we had to wait in the room a while...well for a kid with a cold, she had a ball. And I finally got that look in her eyes that Avery gives me constantly...that said I love you Mommy and I love this moment together. She is so sweet. Sometimes it's hard for me to even be frustrated with her feeding issues because she'll just sit in my lap in the chair, snuggled up in the crook of my arm and it's like she'll just starting talking to me. Not the loud consonant sounds Avery does, but this sweet sing-songy dialogue she has. Our Georgia PINES parent advisor always says that Lily makes the most beautiful sounds. I had never before thought of baby babble as being beautiful...but Lily's baby babble is beautiful. And that smile...that first thing in the morning smile is priceless...wild hair everywhere...clutching her wubbanub...and she sees us and this grin just slowly creeps across her face and just goes on for miles.

Okay so basically...no matter how frustrated I get sometimes or how little sleep I'm running on...I love my girls so much!!!

One year check up

We went to the pediatrician last week for their 1 year check up which was fairly uneventful (if that can actually be said about a two hour trip to the doctor with three babies). We got pretty much the same report that we expected...Avery is growing and gaining weight fine, she now weighs 17lbs 6 ounces (according to their scale which I don't always think is acurate) and is 28" long. Developmentally she's doing wonderfully, eating well, drinking her bottles well, babbling, crawling, pulling up...so no real worries with her.

Lily is still not gaining weight like they'd like her to. She's 15lbs 13 ounces and 26 1/2" long...so she's only gained about a pound in the last two and half or three months. Her GI doc asked us to add Carnation Instant Breakfast to her formula to boost her calories. I did it, but only for a couple of days because there appears to be quite a bit of sugar in that stuff which my ped agreed with. She mentioned something called Benecalorie so I asked GI and they said...instead try to add 1 to 2 cans of Pediasure. So, my baby who struggles to drink 16-20 ounces in a day of her formula is now supposed to drink an ADDITIONAL 16 ounces of another drink? Yea, right! That's gonna work! Normally I am really happy with how responsive the GI doc and his nurse are to my questions (there are many almost weekly) - but this one just made me mad. The whole problem with her weight gain is her trouble with drinking her bottles. She's a great solid food eater so my ped said well boost her calories with her solids and I said okay, but what about hydration, to which she said make sure she eats lots of the watery foods like applesauce (which has no calories!!!!) Ugh, sometimes this whole feeding thing makes me crazy! I am trying to get the GI doc to do a referral to his nutritionist but he just wants to keep waiting and see what happens with her weight by our next visit at the end of the month. Anyway, other than that she's doing well developmentally...crawling, babbling, pulling up. Her reflux is pretty much under control which is always a good thing. We're getting her an OT (occupational therapy) evaluation in a couple of weeks due to my concerns about her sensory processing issues. I think some people think I'm overanalyzing her personality and development, but I feel in my gut that she's got some issues going on that need to be addressed, not ignored. Several months back I worried that she might be mildly autistic due to some traits that she had at the time, which she has now pretty much outgrown...but I still think there is something going on with her. So, I'm hoping for some guidance on how best to help her after the evaluation. For now I continue to approach her with calm and less stimulationg, not more when she has her moments.

And last but most certainly not least, little Zoe Rose...she is doing amazingly well!!! Except she needs to not gain anymore weight. We got to cut her calories at our last GI visit which I was very glad about and our ped has now added "obesity" to her chart...I'd like her to add a disclaimer that reads "due to severe chronic lung disease and side effects of the life saving steroids she has had to be on". I know her weight will all even out over time. She's still on the steroids for her lungs but even with the last wean in November and her increased activity during the day she is losing some of her puffiness. According to the ped's scale she is 18lbs 2ounces (which I don't believe, according to my scale she's pushing 19lbs) and is 25 1/2" long. It's kind of funny seeing how we visit so many different specialists and they all weigh her and measure her and everyone gets something different - she has even ranged in length from 25 to 26 inches depending on who measures her. Anyway...she's doing great. Staying around 1/2 to 3/4 liters per minute on her O2, as my other post said, she can now roll over all by herself and is sitting by herself for short periods. She still has quite a bit of strength to build up in her arms and legs...but she'll get there. Our PT said she can tell Zoe is used to someone holding her because of how she sits and the fact that she doesn't really have the reflex to catch herself if she falls over(we're always there to catch her).

As far as follow ups for Zoe go - we'll continue to see the pulmanologist every 6 weeks as he monitors her progress, lung development, O2 requirements, and meds. We have feeding therapy at home once per week and at this point Zoe is not taking anything by mouth...no bottles, no sippy cups, no solids. I've taken the advice of other moms of multiples who have preemies with feeding issues and am trying to make eating a fun experience. Whenever Avery and Lily eat, Zoe is in her high chair right next to them, watching and I hope learning. One night I just rolled up her sleeves, put some oatmeal and some yogurt on her tray and just let her play in it - it took her a while to realize it was even there and her fingers did eventually go in her mouth so I thought okay, I'll try this again. The next time I gave her a spoon (just like her sisters) and dipped it ever so lightly in the oatmeal and handed it to her...it too eventually went in her mouth and she kept sucking on it. So I gave her a little more and then a little more. I let her control it. This is my standard practice at the moment. The amount she gets is not even measurable, but at least she's putting something in her mouth. I got a little full of myself though one day and I attempted (after much spoon sucking on her part) to give her a small spoonful myself...well she acted like I had poisoned her! She gagged, turned red in the face, then turned her head to the left and fell asleep (this is a behaviorial tactic of hers when she is in a stressful situation, she turns to the left, breathes heavily for a few minutes and then is fast asleep...however, if it is during a feeding session and she is in her high chair, as soon as you unbuckle her belt she wakes up!) I know this will be a long, slow process for her...and I keep going back to what Dr. Kupke told me last March - that her progress won't be measured in days but rather weeks and most likely months. So I just have to make sure that I figure out how to balance being patient without just giving up or "cutting her too much slack".

Her ENT appointments and work at the Speech School will also continue as we try to assess what her ACTUAL level of hearing loss is and develop her language skills. Behaviorially she acts as if she's maybe mild to moderate in one ear and moderate to severe in the other...according to testing she's severe to profound. Is this due to the fact that developmentally her brain just doesn't fire quickly enough for the test to pick up the response to sound? Or that to some degree she is still learning to locate a sound eventhough her body language clearly tells me that she hears it she just can't find it? The good thing is that Dr. Herrmann is not in a rush to do a cochlear implany. He wants to give her time to grow, for her lungs to get stronger (b/c surgery means intubation), and for us to keep testing her. I'm glad I don't feel pressured at the moment and we've all seen here at home how incredible her progress and growth has been since she's been home.

Zoe will also be getting an OT evaluation to help her with her fine motor skills. her PT has really helped her a lot and our feeding therapist is an SLP...but now that she's stronger I think we need to fill the OT gap as well.

And finally, we'll get getting an endocrinology consult soon due to some issues that may be going on with her hormone levels. I am very eager to see this doctor and hope they can get us in soon...she is doing so well in so many respects I want all her bases covered and monitored!

So that's the big one year report on the girls. We've survived the first 3 1/2 months of RSV season and have 3 1/2 more months to go. We appreciate everyone's understanding in our limiting visitors and our outings (we don't go anywhere except the doctor). The holidays were fun, but there was definitely something missing in that we did not go to Mema's with Richard's family and we haven't seen our neice or nephews in months. This breaks my heart because I miss them so much...but they and their parents are great and understand how critical it is that our babies make it through this RSV season. I don't think I've ever looked forward to Spring as much as I am now...I can't wait to get out and show the girls the world!!! I want to go to the Zoo, the park, just to get out of the house with them and introduce them to ALL of their family and friends will be a dream!

But that will have to wait....three and half more months. So far we've gotten by, until today...Avery has an ear infection and Lily has the sniffles (picked up at the doctor for their well check up last week)and we had to get Avery swabbed for an RSV test....please don't let it be RSV and please, please, please don't let Zoe get sick. So far we've kept Avery and Lily away from Zoe which breaks my heart because I so worry that she's left out so often due to her developmental delays and the fact that she just can't quite play with them yet. I always make sure that they are with eachother throughout the day and it is just the facts right now...Zoe isn't independently mobile and the other two are. I know in my heart that they will all bond in time and will all be close, but I just feel such guilt about her not being able to enjoy what they enjoy. But then...I try to go back to what a good friend told me that our realities are diferent even when we grow up in the same household. This is what Zoe needs, this is what her reality is, and it's okay...she'll get there. Avery and Lily are always quite curious about Zoe or at least all the things that are attached to her like her feeding tube, her nasal canula, her hearing aids, her pulse ox...all these things that they want to grab and shake and put in their mouths...Oh and Zoe grabbed her toes for the first time too! I remember before she left the hospital we were working with OTPT to get her to notice that she even had feet - and now even she is trying to pull her pulse ox off :)

I realize that this post and gone on and on and on so maybe that will make up for my dry spells the last month or so. I have so much more I want to write about...namely the whole feeding and psychology of it all...but I'm still working on that post. For now take care and hopefully these videos will start working!

You've waited long enough

To all my faithful readers...thank you so much for leaving your comments. I love to see who's reading and keeping up with us. I love that there is such a mix of family, old and new friends, triplet moms, preemie moms, and so on.

And Taryn...yes, of course I remember you, how could I forget one of our favorite nurses? What's funny is that the day you left your first comment I had just come across the note you left for us when Zoe was discharged and I was going to email you to say hello...so I'm glad you beat me to it!

Hammer and Missy...at least this addiction won't harm you in any way...except it may make you postpone having kids :)

I'm sorry it took me so long to get this up. I have some really good excuses though:

1. We have been without a nurse for Zoe for the last 11 days - I'll save that story for another post - it's a doozie!!

2. Zoe had outpatient surgery last week to get her peg tube changed out for a mic-key button (and yes Kara I do love it! but am terrified of it coming out!!!)

3. Zoe also had to go to the ENT doctor last week to get retested in the sound booth (still showing severe to profound hearing loss) and in the process of #2 and #3I got strep throat and was quarantined at my mom's house for 2 1/2 days!!!!

So anyway, here you go but I've got to do these slideshows and videos in a few parts for reasons due to my amateur blogging, downloading, and uploading skills. I've got some great professional pics of the girls that my sister took one afternoon...but her files are so darn big I can't upload them very fast...so I'm hoping our "super cool auntie nomi" can maybe send me some photo files that are a little smaller??? I'm full of excuses today aren't I? Maybe I'll just keep stretching this out so you'll keep coming back and back and back :)

Anyway...here is the first set of pictures from our princess party and a few from Christmas. The girls first real Christmas (no isolettes, IV's or jaundice lights!!!). So, enjoy and keep reading!!! Their one year well baby check up is tomorrow...

Holding photos hostage

I've decided to hold my photos and videos hostage until you tell me who you are. I'm so curious to know who keeps up with my girls. Are you a long time friend or relative? A virtual friend? A preemie mom or triplet mom? Let me know who you are and only then will I share our December photos :)