5 months post op

Yesterday was 5 months post op. Tuesday she turned 10 months old. Today is 5 months, 1 day post op - she had surgery at 5 months, 1 day old... so she has been post op for as long as she was born pre-op.

I cannot believe it... it seems like yesterday. Yet the one month from when surgery was scheduled to when it happened seemed like eternity.

She gets funnier and more of a personality every day. She scoots herself backwards in her walker and seems surprised when it moves. She holds her bottle better these days and eats anything I feed her. STILL no teeth - I think she is taking after her momma. She still eats up anything Collin says or does to her. She will watch Collin and Sasha (our dog) play chase with the tiny yorkie-sized tennis ball and just laugh and squeal. It's one of the few times I get a real laugh out of her. She's a very somber baby. Her feet still sweat constantly, so do her hands. Sometimes it's hard to tell if her hands are sweaty or if they're just covered in slobber.

I still don't think the enormity of everything that happened has actually sank in, and maybe it never will. Maybe there's a reason it hasn't, similar to why parents aren't allowed in the OR and why people leave the room when a baby has a medical crisis. It's just too heartbreaking, too painful. I was looking back at her pictures today and reflecting on what a tough girl she is, and I saw the ones of her on her ventilator and all hooked up to everything, fresh out of the OR. She's laying there, asleep and helpless, and it's the closest I've ever come to completely understanding what she went through. It's like a bucket of ice settled in my stomach, and for a brief moment I realized exactly what had happened. I have lived with the scars every day, but never fully grasped the cause. My daughter is a miracle, she's amazing, and her strength once again has me speechless.

Joyous thanks and praise to God for Haley Mae - who is kicking everyone's butt in the hospital and doing so well - and to Stefan, who is recovering in smaller steps but nonetheless doing fine. Continued prayers coming their way.

Almost 10 months

I was thinking yesterday, that Lillian is the better part of a year old! She turns 10 months old tomorrow, and Wednesday marks 5 months exactly from surgery. Since she had surgery at 5 months, 1 day old... she's been post-op for as long as she was born pre-op, if that makes sense at all. I can't believe it's all gone so fast.

It's weird to think of her being almost one, because I still see her as so much of a baby. She still uses her swing and bouncy seat, she doesn't crawl, she has no teeth, know what I mean? Like at this age, Collin had been crawling for 2 months, had a tooth, was pulling up on furniture and cruising all over the room, and was in to everything. If we tried to put him in his swing/bouncy, he looked at us like he thought we were nuts. But, he also didn't fit - he was too fat for them!

It's hard not to baby her and encourage her to stay like a newborn - she was small, sick, and helpless for so long, it's almost routine. I was looking at her the other day, curled up in her crib, under her blanket, and she looked very much like a newborn still. She still seems so small in her big crib with her pink fuzzy blanket that I got her when we were discharged from Children's Mercy. It's Lily and Mommy's favorite blanket and it's used almost every night. When she's under her blanket, or in her infant carrier all bundled up, she seems to dissapear and no one would guess she's almost one.

I got to talk to another heart mom from Maryville last week, she is Dr. G's second case ever. She asked if she could talk to someone else who's been there, so St Francis called and gave me her number. There were so many similar things, except her baby is 5 mos old and already bigger than my 9 month old! But her baby has a VSD and they have surgery upcoming, and we talked for probably the better part of an hour. I tried to give her as much advice as possible, but sometimes it's hard to know what to say - even having been through it myself.

Lillian got some red and green themed hairbows the other day and I put in pigtails with the bows and it looked soooo cute. She's also been in her walker for the first time, it's the walker that keeps getting passed from my sister in law, to us, back to her, back to us, with each kid. She's not got a clue about the stepping motion, but she likes Winnie the Pooh on it.

I also wanted to get on here and give a big shout out and prayer request to Haley Mae and Stefan, both of which are undergoing open heart surgery today. Please keep them in your prayers - for a safe surgery and speedy recovery. Thinking of you guys.

More later. Thank you to all who continue to read this and check in on us.

Just babbling

I haven't written in about a week which seems like such a long time, so I figured I'd pop in.
Not a lot to say, really. Lily's legs just keep getting stronger, I hold her hands simply for balance and she pushes from a sit to a stand using her legs. Yesterday evening and this morning she's been rolling over to her tummy a lot more and seeming less pissed off when she realizes she's on her stomach. We had some cartoons on briefly this morning and she flipped over and propped herself up with her arms and was watching the TV from her stomach. It was funny to look at. She gets all excited and bangs on the floor and kicks her legs like a frog and I just know that if she'd build some strength in her arms and realize what they are for she'd be crawling in a heartbeat. She seems to have no interest in her knees, even when I try to put her on all fours to see if she can hold that position she won't bend her knees and ends up on her hands and feet, like if she were to bear-walk. She'd much rather stand than sit.

She's not been a good eater today - she's only ate her morning bottle and about 10 bites of a turkey dinner thing, but at least she napped good this morning. She didn't even seem to want her morning bottle, it took her almost an hour to drink it. Yesterday she took two very short naps that totaled less than an hour. This morning she took a 2 hour nap. Funny how big of a difference a day can make. Last night she must have gotten a frog in her throat cause she was coughing really hard and almost choking on her spit. It was odd - I hope she's not coming down with a cold.

She's getting taller by the minute - things get too short before they get too small. She's outgrowing her infant carrier by length. I was really hoping to hold off on buying another carseat, but I think I'm going to have to. Collin has one in each of our cars that is a forward and backward facing convertible that works from 5-40 lbs, and I was hoping she could use those. She could, but he's still in them. He can't switch to a booster seat until he's 4 and 40 lbs, and he won't be 4 until March, and he's only 32-34 pounds since I can't get the kid to eat anything. By March, Lily will more than likely have outgrown her carrier in length. It's frustrating, because the weight limit on it is 20 lbs and she's not 20 lbs yet and probably won't be by the time she turns 1, so even if we did get her another carseat she wouldn't be able to face forward. She's just too darn tall for her carrier. The height limit is 29 inches and she's pushing 28 already and the shoulder straps are getting to where they need to be moved to a taller slot... and there aren't any more taller slots.

Which means we're probably in the market for another carseat, which is cool because they have a cute pink one at walmart, but we'll need two - one for each car, since I take the kids in the morning and he picks them up when he gets off work. I guess I'm off to check out the babycenterstore.com, since I have a $20 coupon and a free shipping code for them.

On that note, I'm really hoping her christmas dress fits her - it's size 12 months and it might, Christmas is 6 weeks off still I guess and by then she'll have gained probably close to another 1/2 - 3/4 pound. I haven't seen any other dresses that I really like, so I'm crossing my fingers. I guess if it's too big, it's too big... she has good reason for it!

I guess that is all. It's hard getting used to just living life, I still feel like anything can happen at any time with a heart baby. Hard to get rid of that "pins and needles" feeling. As far as I know, our doctor here has not recieved the reports from CMH... I will try to wait until middle-to-end of November and call if I haven't heard from them. I will be a pest, and I do want copies of it all!

Well, off to watch the race. Hoping everyone is doing well!

Here's our little tiger for Halloween.
It went well around here. We took the kids to the city's "uptown trick or treating event" on thursday, where all the businesses on the square hand out candy just for the kids, it goes when it's still light out, from 5-7pm, and the police and stuff are there to keep people safe. It was packed. Lily was good, Collin was awful. He didn't want to do it anymore after about 10 minutes, so we just kept dragging him along - Brandon's sister Karissa and her two girls came with us. His other sister Tiffany and our third neice was going to come, but Sydney was sick so they stayed home. Due to Collin's crappy attitude on Thursday, we did not go out trick or treating last night. The kids went to Grandma's and Brandon and I went bowling. I was on a roll (haha, pun) on my first game and bowled a 126 (don't laugh... heehee... that's good for me...) Then I had a beer, and then another beer, and my bowling game got progressively worse in direct correlation to how many beers I had. Actually, I think I only had two, but my third game was an 87. Go figure.

I took some pictures of the kids in costume, and I posted Lily's here for you all to see. I had a mini heart attack Friday afternoon, after the kids were napping and I got a chance to try to upload all of my pictures. Turns out the (awful, no name, off brand) CompactFlash card I have had corrupted somehow. Insert panicked face here. Neither my computer or my camera could read any of the shots I'd taken. So I frantically searched the internet and found a free trial of a PC photo recovery tool, and spent 2 hours watching it painstakenly pull every.single.image I'd ever shot on that card (even deleted ones) from the depths of the "heavily damaged" (it's words) memory vault. Some of them it was only recovering half of the image, so I must have really messed something up somehow. That or the card just sucks. Thankfully, it recovered all but two of the Halloween ones. Happy Dance. $40 later, I am the proud owner of a new (hopefully better) CompactFlash card.

Anyways, that's just rambling. Lily's been fairly good. I noticed that her feet sweat, a lot. They kind of always have I guess. But it's so bad lately... she has such stinky feet. Every time I'd give her a bath I'd be like... what the heck smells like puke. Seriously. Well, this morning I was giving her feet extra attention and noticed... um... goo.. growing (?) between her toes. Bleccccchhhh. So I get that all cleaned up, and now I think it's intervention time. She's going sockless whenever she can, unless it's too cold, but luckily today has been 75 degrees. I have baby powdered her feet twice today in an attempt to keep them dry. I'm half tempted to call the pediatrician to see what he says... but I donno if he'd have any other advice other than "keep them dry." I hope she doesn't have some kind of fungus infection problem going on. Come to think of it, I might call Monday, just in case.

That's all for now folks. Send us rosy-smelling feet vibes.