2 years old

I have been horrible at keeping this updated. I am so used to using her carepage! It's lilygrace2 if anyone wants to venture over there to read about the last 8 months or so of her life. She's walking, talking, growing - she's up to 50% on the weight charts! 26 pounds 8 ounces as of Friday. She's huge! She's in speech therapy once a month and physical therapy twice a month - she didn't walk until she was almost 2. So they're trying to catch her up in her motor skills.

She sees the cardiologist only once a year now. As of October 2009, she had a completely normal heart report. Size and function were normal for the first time since birth!

Again... her carepage is www.carepages.com and her page name is lilygrace2. I'll try to remember to copy my updates there over to here!

One year post op and 17 months old

Today we celebrate the anniversary of Lily's surgery to repair her defects. I can't believe it's been a year! I remember so clearly what I was doing at this time a year ago - pacing the same-day-surgery waiting room with a sleeping baby, updating everyone constantly, stressing out! If only I could have napped! But it came, and it went smoothly, and I'm amazed at the changes I've seen in Lillian over the past year! She was such a trooper, and she's grown and developed so much! I believe she's about 22 pounds now, not sure how tall. I had to fold up the soft pink blanket I bought her the day we left the hospital last summer. It was kind of my "healthy heart" present to her, and now she's way too big for it! But it was used almost every day over the winter. It's sitting in her closet now and it's something I know I'll keep forever.

As you all celebrate this milestone with me, please keep Tiffany Robinson in your prayers, as Sunday is the anniversary of her daughter's death following a stroke she had post-ToF repair. Her surgery was the same time as Lillian's - you can go back in my updates and read her story.

Yesterday Lily turned 17 months old! She still only has 1 tooth, she's not really talking yet and not walking - but she's getting soooo close! She will bear walk and stand herself up for a few seconds, and then she sits down like "what am I doing up here?" She's very expressive - her facial expressions crack me up sometimes. When she's happy or excited, she gets big eyes and claps and goes "yaaaaaaaaaaaaaaaaaaaaay!" I'm SO not concerned about her speech yet, I remember what a rough start she had and she's so stubborn, she will talk when she damn well pleases. She gives the best kisses. When I go "kiss!" and pucker up my lips, she scrunches up her nose, puckers her lips, and leans in to me. It's adorable!

Our next cardiology appointment is October 6th at 9:45 am. Little over 3.5 months away!

Sorry for neglecting

I got wrapped up in her carepage and kept forgetting to copy and paste posts. Then it became months with no updates and I just let it slide.



In a nutshell, Lillian is doing quite well right now! Her last cardiology appt was in April and it showed normal heart functioning numbers, with slight enlargement on the left side still. Her next appt is 10/6.



She is crawling, she will stand for a couple seconds alone, she cruises furniture like a champ. She is not walking yet, not talking, and only has 1 tooth.



She weighs about 22 pounds right now, which is low on the charts for her age but she looks chunky and huge to me! We are coming up on her turning 17 months old on the 18th and the 1 year anniversary of her surgery and I cannot believe it's been a year, and I'm astonished at the changes in her since her repair.



She has been very sleepy the last few days and it kind of concerns me. She slept Sunday from 9:30-11:15am and then 1pm-3:30pm. Yesterday she slept from 10:45am-12:30pm and then was back asleep 45 minutes later and slept from 1:15-4:15pm. This is quite uncharacteristic of her. Hopefully it's just a growth spurt maybe? Of course with her history I will always worry.

More consistent updates to follow, I promise!

Thanksgiving, snow, december, and the like...

I can't believe it's December already! I've been away from work for 5 days and busy with family and Thanksgiving and such. Now I have a small amount of time to reflect on the week and write an update of sorts.

We had a good Thanksgiving. We visited Brandon's family in Guilford for a bit and then traveled to Kansas City to eat good food with my family. I adore my family and none of them had seen Lillian since her surgery except for my grandparents who housed us while we were down there. They were all surprised and impressed with her progress and how big she looks, to them. I realized this is the first time since late September that I went down there for something other than cardiology.

We woke up to our first snow Saturday morning. I was bummed because I hate snow, and I had planned on doing the kids Christmas pics on Saturday and had wanted to use natural light, and all the clouds were killing that. So I ended up just using black and white backgrounds and artificial light, which is not my forte, and photoshopping them until the white looked White enough.

It takes everything I have sometimes not to obsess about Lily anymore and sometimes I want to just scoop her up and run to the nearest baby scale to make sure she is still gaining weight, still looks good, etc... you know us obsessive moms. Sometimes she looks so big to me but then I remembered, as I put her in 3-6 month size sleep pants the other night, that she is still quite small. Baby clothes are sized so weird - depending on the brand she can and does wear clothes anywhere from 3-6 months in pants to 18 months in shirts. Most of her clothes are 6-9 or 12 months.

I was able to get her a "baby's first christmas" onesie and I was rather excited about that, as Collin was too big to wear any of those things when it was his first Christmas. He was born in March and despite being only 9 months old at Christmas, he was a normal size child and was wearing 12 month clothes. I guess clothing designers assume that any child in size 12 month clothes is at least 12 months old and don't make "first christmas" things that size, because I have never seen one bigger than 6-9 months. I snapped up the last one that size at Walmart last night and put her in it, and she promptly got chicken dinner all over it so it needs washed. It fits, and will probably fit her all through the end of the year unless it shrinks bad in the wash. Gosh, sometimes I forget she will be one next month!

She is getting closer to crawling, she almost gets up on all fours now, she spends much more time on her tummy without crying. I think we are making progress on the teeth, this morning I saw two very distinct bumps. Maybe my child will cut teeth, after all!

I will be calling Children's Mercy again today, as my doctor's office up here still has not gotten her report from the October visit. Is there a wall nearby I can bang my head into? I do think I will be asking the doctor's office about her sweaty hands and feet, just to put my mind at ease. I was going to let it go but it's 20 degrees outside and her feet and hands are still sweating. It's really crazy sometimes - the girl can barely wear shoes because they really make her feet awful.

We definitely have plenty to be thankful for! There were times earlier this year when I wondered if this day would ever come! Our house is festive looking now and we are looking forward to Christmas. Prayers go out to Connor Dickson's family, as Connor (HLHS) earned his angel wings Saturday. Thank you all who continue to read this and check in on us and pray for us - you mean a lot to us!!

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!