Well...despite the fact that the babies NEVER leave the house...and despite the fact that Marty and I are avid hand-washers...despite the fact that we both change clothes when we come home from work AND take showers...despite ALL of that, the FUNK has reached our household. Anderson came down with it last week. Snotty, snotty nose, cough, fever...poor baby was pitiful. Poor Mommy was TERRIFIED. I can't lose the fear that they put into you in the NICU that when your preemie gets sick, it's automatically life-threatening. I freaked out. I think our Dr.'s office probably laughs at me--I've called at least 4 times since last Monday. The good news is that it's a viral illness, so no meds, other than a little Tylenol, were needed; the BAD news is that it came around again! Anderson got better for a few days, then got worse again. No fever the 2nd time around, but more snottiness, and the cough became a more "chesty" cough. However, it didn't stop there--last night, Marty came down with it, too. This is even WORSE news for Mommy; this meant she had to care for both babies all night last night, and will do it again tonight--YUCK. I'm already exhausted, and pretty much counting down the minutes until I start feeling bad myself.
The worst news is that Amelia's surgery has been postponed. I called her surgeon today to let them know everything that has been going on, and they decided they want to play it safe. She has been exposed to both her brother and Daddy; odds are, she's going to get sick. It would be tragic for her to come down with this, say, the day AFTER heart surgery. Since it's a fairly elective procedure at this point, they decided to push it back to Sept. 15th. In some ways it's heartbreaking to me; I had mentally prepared for this week for SOO long. Now, I'm back in waiting mode, which gives my mind just enough time to wander again, which is never good. But...I completely understand with the doctors' decision, and I agree with it. It just seems too risky given the germs in this nasty household!
So...we're clearing the air in here--literally, since the weather is perfect for opening a few windows right now. I'm just picturing all the little germs flying right out the door with the breeze. Just hanging out, waiting for the funk to leave. Hoping I have the energy to get through tonight--might even need to make some coffee! Sigh...
Here's a fun pic...I was playing around with Ms. Amelia a few nights ago. I think she's making an Elvis face in this picture...
And here's a video of a very happy Anderson (as always, please ignore the hick Mommy chatter):
Keep us in your thoughts, please, as we try to kick the germs. All joking aside, we're very scared of how sick Ms. Amelia could get if she caught it...
Well, I'm sure you guessed...going back to school has really cut into my computer time! This update is LONG overdue!
Starting with going back to work--it's going SO well! The babies love Mrs. Susan (the nanny); every single time I've come home, they've always been happy and/or asleep; I've never come home to anyone crying with her. This is TRULY a miracle; someone is always crying around here! :) She works hard to keep them happy, and they are just that. As for me, I think I'm doing really well with having to leave them every day! I just really love my co-workers (love you girls!), and being with them all day honestly makes it so much easier. I also really kind of like my job (*gasp*!!!)--it's a very, very fast-paced, busy job, especially at the beginning of the school year--so I stay busy from the minute I arrive until the minute I leave, which is good. I truly value the time I'm with the kids at night--I think before, I took it for granted. I always get home about an hour or more before Marty, and I *LOVE* this; it's Mommy Time! Of course I love when he gets home, too; the babies love their daddy very much, but I get that little bit of time to myself, just like I used to have. SO...overall, things are going well!
As for Amelia's surgery...she's having the procedure done on 9/2. This is a Wednesday, according to her doctor, she should be home by the following Monday. The surgeon was really nice, and put us at ease about the procedure. It's just a super, super common operation (it's what pediatric heart surgeons do the most of!), the procedure itself will only take 20 minutes, and hopefully she'll recover well and come home quickly! I'm just excited at the thought of her a) not needing oxygen anymore, and b) being able to gain weight faster. The little girl likes to EAT; she's eating way more than Anderson was at her size! She just burns all of her calories off because her heart is working too hard. We're banking a lot on this "fixing" her, so as scary as the whole thing is, it's a good thing. I do have to admit to some serious freak-out episodes. The thought of being back at that hospital is NOT a good one, even though I realize it's a different situation altogether. I was reading the little Children's Hospital welcome information that we got at her consultation, and I realized that we will be stopping at the SAME check-in desk in the PICU as we had to check in when they were in the NICU. I realize that, to some, this probably seems like a minor thing, but if you've ever spent any real time in the NICU (or in the hospital in general), you realize how HORRIBLE I felt! I broke down in tears, and I tear up EVERY time I think about it! I'll see the same nurses, the same doctors...not that I didn't like them when I was there, but I was banking on never being back. It just brings back a LOT of rough memories for me. I'll live, though, especially if it makes my little girly better.
The babies are doing great! Anderson is a strong little man--he loves to stand up ALL the time! He can bear all of his weight for long periods of time, and he gets mad if you make him sit down! I took this picture of the little guy in his bed. He did NOT pull up like this; I was just holding him up, and helped him use the railing to stand on his own:
I think he'll walk early. :) He loves to be on the go; he loves to squeal, talk, and play rough. He is about 13 pounds now, so he's still a little man, but he's so much fun!
Amelia is my sweet, sweet girl. She is so full of personality! She's seems like such a little contradiction; she's SO small that people who see her expect her to act like a newborn! I'm sure it's odd for them to see this 6 pound baby talking, laughing, grabbing things, holding up her head...she's amazing. She is SO, SO happy; she smiles almost constantly. Unfortunately, sometimes she'd rather smile and talk than eat; I have to literally avoid eye contact with her when I'm feeding her occasionally because if she looks at me, she starts smiling, and milk runs out of her mouth--then she'll start talking. :-) It is ADORABLE, but obviously we're trying to get her to gain as much weight as she can, so it's not such a good thing. She's so good-natured...which is good because sometimes Anderson just...isn't. :)
Here are a few pics of everyone:
Thanks for reading, and for thinking of our babies! I'll be better about updating; at least on weekends!
We got some news about Ms. Amelia and the issues with her heart. After her echocardiogram and appointment on Monday, our cardiologist told us that her PDA (hole in her heart) was still medium-small. He said that he felt like they had given it plenty of time to close on its own, and that he wanted to confer with his colleagues to get a general consensus on whether or not she should have surgery to close it. The pros of having the surgery are that it would cause the pressure in her lungs to decrease, which would allow her to breathe better, and to get off of her oxygen, as well as give her the best possible long-term outcome for her lungs. The cons are, obviously, her size, as well as the fact that she JUST started doing well with eating and gaining weight. He told us he'd talk to his colleagues and get back with us by the end of the week.
I got the call this morning--they all concur that she needs to have the surgery. The benefits outweigh the risks, and they feel pretty comfortable with the procedure. Normally, this can be done out-patient by threading a catheter with what is essentially a cork into the ductus (hole in the heart) and closing it. However, because Amelia is tiny, there are serious risks with attempting to use a catheter; her veins are TINY, and if there were problems threading the catheter, it would end up being worse than just having regular surgery. We go for a consultation with the surgeons on Monday; I will get explicit details on the surgery then. They did tell us to expect her to be in the hospital for at least 1-2 weeks.
My heart is broken. Even though I'm reasonable, and I know that this is for the best, it hurts me to think of her having surgery on her teeny tiny heart. I also have near panic attacks just THINKING about being in the hospital again. Someone once said that being in the NICU truly causes post-traumatic stress disorder, and I believe it. The thought of parking my car in that parking garage, taking that STUPID shuttle over to the hospital, walking through those doors again--it puts me over the edge. And all of that doesn't even TOUCH my fear of the "what-ifs"...I cannot stand the thought of anything happening to my sweet little miracle.
Amelia is so, so strong. I knew this the day she had her hernia repair, and she immediately extubated herself and breathed on her own just fine. She has come though SOOO much; this is just another small bump in her road, I'm sure. I just love that little girl more than life itself, and if, God forbid, something happens to her...I'm not even going to think about it.
Please, please pray for our little angel baby. I'll update again with the details of the surgery after our appointment next week.
We had our first double doctor's appointment yesterday--to the NICU Grad clinic. UK's NICU has a follow-up program for all of the long-term patients. We take Amelia monthly, and Anderson every 2 months, for a visit. During the visit, the babies see a dietician, a social worker, a neonatologist, and possibly a physical therapist/occupational therapist. The purpose is to monitor the babies' development, which we really appreciate because we're first-time parents, and we have no idea what is normal, and what isn't. We were a bit nervous about taking both babies to the doctor at the same time, but it was just fine. Both were pretty tired, hungry, and fussy by the time we left, but overall it went well!
Here's the scoop on the babies:
Anderson: The doctor was THRILLED with his development! She said he didn't even remotely look or act like a preemie, which was music to my ears. He weighs just over 12 pounds, which is still small, considering he's 3 1/2 months adjusted, but they were not concerned at all. Since he sleeps through the night, his weight gain has slowed some, but they are okay with that (and we're so glad!). He has some increased tone, which is extremely, extremely common in preemies, but they were very happy with his head control and motor skills, which was awesome because I've been SO concerned about that! He looked so good that the doctor said he doesn't have to go back until APRIL! That will be when he is 1 year adjusted! Very exciting; one less doctor's appointment is a good thing in my book!
And speaking of Anderson...we have exciting news! Anderson can now ROLL OVER (belly to back)!! I'm sure a lot of you moms to term babies think this is no big deal, or that he's doing this a little late, but for a preemie, this is FANTASTIC! Especially with his increased tone issues. I have to confess that I did another little "boot camp" kind of thing, where we worked on it for a few days--we went from me guiding him to roll over, to me kind of helping him get on his side, to him just doing it all on his own. He loves doing it, and always smiles as soon as he flips--he hates tummy time, and loves when we cheer for him after he rolls. Such a cutie!1
Amelia: Amelia weighs about 5 1/2 pounds now. She is gaining so slowly, but steadily. In fact, her rate of gain increased this past month, which is good. She's just so petite all over that she's not going to be able to gain much faster than that. They want us to start weaning her from her oxygen (that's a whole other story altogether), which scares the living daylights out of me. We were told to start immediately by having it off while she's awake, but I'm going to wait until Monday, after her cardiologist appointment, to even consider doing it. The cardiologist seemed to think oxygen was a good idea for her right now, so if he thinks it's important, it's not coming off quite yet. I'll add more about all of that after her appointment on Monday. They also want us to start mixing her 24 calorie formula with some 27 calorie formula, which I hesitate to do because she has such a sensitive stomach. I agreed to give it a shot, with the disclaimer that, if she starts puking again, I stop immediately. We haven't started that because yesterday she had some stomach issues (both ends, actually)--maybe some kind of stomach bug? I don't know...but I'm not changing anything right now. Overall, though, they were pleased with her development as well. She'll go back in a month for another oxygen check. We felt good about the visit, overall!!
I've been wanting to add some videos, and this seems like a good time! I have to add a little sidenote, though--I am SUPER annoying! I try so hard not to talk much when I video the babies, but if I don't talk and distract them, they just stare at the camera. I wish I didn't sound so "hick", or so screechy, but I guess I'm just both of those things. Please forgive the annoying mommy in the background!!
Here's Amelia waking up and smiling/talking a little bit. She usually has more to say, but the camera totally distracts her:
This actually happened awhile ago, but I'm just now getting around to posting about it. Last weekend, we decided we had had ENOUGH of just sitting in the house; we both take turns getting out and about, but never get to go anywhere all together. We decided that, since we got the portable oxygen tank for Amelia, that we'd venture out to get ice-cream. Mind you, Marty, Anderson, and Amelia stayed in the car while I ran into Graeters, but still--we got out! We'd never all been in the car before, and needless to say, it was FULL. As soon as we can afford it, we're going to have to spring for a bigger vehicle. My little Civic isn't cutting it, for sure! When both carseats are in there, the passenger seat must be scooted as far forward as possible; not very comfortable for someone who is 6'5!! We also discovered that Marty would never be able to drive with all of us in the car, because the seats have to be so far forward. Not a good situation!
Anyway, the trip was a success, with only a small amount of fussing by Amelia that was quickly fixed with a pacifier. We were gone and back within probably 45 minutes, and all was well! We got even braver this past weekend and went to *gasp* Target for about 10 minutes to get some new sunglasses for yours truly, and then to Starbucks. Amelia is really not supposed to be around "large crowds" of people yet, but both places were fairly empty, we didn't stay long, and it CANNOT be any more disgusting or germy than the many doctor's offices that we visit--that is a guarantee. It feels really good to get everyone out of the house for a little while, too.
Here are a few pics from our adventures out--please ignore how insanely horrible I look:
First off...my trip to Cincinnati for a work conference was definitely a success. I missed the babies, but knew they were in good hands with Daddy and Nana, and the girls that I went with were so much fun! We enjoyed eating at all kinds of restaurants all over Cincinnati, and even took a stab at Salsa dancing (okay...some of them did. I mostly watched...). The conference itself was better than it had been in the past two years, which was good for all of us. I came back relatively refreshed, ready to go back to work, and so excited to see the kiddies!
So...I get home, and it's time for Amelia to eat. I go over to her bed...and she's SOOO active! She looks straight up at me, and smiles this enormous, enormous smile! What a welcome home, right? I fix her bottle, get her changed and up, and start to feed her--and she won't eat because she is TALKING to me! I was gone three whole days--just three--and Amelia changed from a sweet, but fairly quiet, calm baby, to a wiggling, smiling, TALKING little girl! Sounds pretty cheesy, but I had tears in my eyes while she was "talking" to me that day. I hadn't seen her so active and alert before; she definitely had a huge personality. She's been that way every since, too. I've learned that she is a VERY happy baby; she has an easy smile that comes pretty much any time you talk to her! It's so hard to put into words, but it's almost like she just "woke up". It made me realize all over again what a miracle this little girl is. She's just truly amazing, in every way. She's 3 1/2 months adjusted (almost 6 actual!), and only a little over 5 pounds...just truly miraculous. Don't even get me started talking about how, according to numerous doctors, she's not even supposed to be here...
Here is a series of pics of Amelia smiling and talking to me yesterday. What a sweet girl:
One of the purposes for starting a blog, for me, was to have a record of some of the experiences we have with the babies. Every day, little things happen that make me smile, and I always think, *this* is what parenthood is all about! I know that these little moments will change as the babies grow up, so I want to take some time periodically to just share what they're doing that makes me smile at that given time. For now, here are my favorite things:
* When Anderson first wakes up, and he's still all bundled in his swaddle blanket, and opens those huge eyes. He looks like a little sweet deer; as soon as you look at him and smile, he smiles SOOOOO big! I literally live for those morning smiles.
* I shared this one previously, but when you wake Amelia up to eat, and she's swaddled, as soon as you unwrap her, she stretches SO big...it's sooo cute.
* When I'm getting ready to feed Anderson, and he knows it's time to put the bottle in his mouth, he opens his little mouth in anticipation and kind of makes a soft little grunting noise. It reminds me of a baby bird; it's so sweet.
* Amelia is just now really starting to smile. Her smile is so wonderful; it looks like a little half-moon. It looks and feels different from Anderson's, and I love that it's uniquely hers.
* I LOVE that Anderson loves all of his Lovies! He absolutely adores all of his little blankies; any time you hand him one, he grabs it with those chubby little hands and just hugs it! He eats it, he holds it with his hands AND feet, he rubs his cheeks on it, he smiles at it...he truly loves his Lovies! I absolutely love watching him with them.
* When it's time to feed Amelia, and you tuck the burp cloth under her chin, she knows it's time to eat, and she sticks out her tongue, trying to lick anything and everything around her. She's like a little snake, or a lizard; SO cute!
* When I'm trying to get Anderson to settle for a nap, and I'm holding him, I can tell when he's ready to fall asleep because he makes tiny sucking noises, as if he had a pacifier in his mouth. Sometimes he manages to suck on my shirt, or the back of his hand, but it's just a sweet sound.
Of course, I have to add a few pics! :) One is Ms. Amelia with one of her newest obsessions; her hands. She LOVES to eat them, which means we do some serious baby handwashing in this house! The other two aren't the best, but they're Anderson with his Lovies. Unfortunately he's NEVER still with them, so they're action shots, and not the best angles, but you'll get the idea.
I'm the mom to three-year-old twins Amelia and Anderson. Amelia has an as-yet unidentified, very rare form of dwarfism that affects her size, kidneys, brain, and heart; Anderson was recently diagnosed with an Autism Spectrum Disorder (ASD). I'm also an elementary curriculum coach, wanna-be fitness enthusiast, avid reader, and sometimes-raving lunatic.