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!

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.

This is Nuts!

I think Lily will never crawl, I really think she'll go straight to walking. Last night I was sitting with my legs straight out in front of me and had her sitting on one of my legs, kind of straddling it with her feet on the floor. I was holding her hands and next thing I know she's pushed herself to a stand with her legs. I didn't help her at all, except I kept her from falling over.

She's not steady on her feet - as in, I couldn't let go of her hands and expect her to stand up. But every day she gets stronger, I was so surprised that she stood herself right up! When I was changing her to her pajamas last night she was standing up holding on to my shoulders and I noticed that she wasn't holding on for dear life like she usually is, it was more of just something she used to balance herself.

This girl has almost no arm strength - when she's on her tummy she can barely prop her head and chest up. She'll tuck her legs under her like she would if she were on all fours but she'll have her head buried in the carpet. She rarely rolls over. But she'll stand all day if you let her. I tried to get her to take "steps" but she didn't understand the concept of putting one foot in front of the other. Once she gets that, it's only a matter of time.

Even with everything she's been through, I honestly think she will walk earlier than Collin did. He was crawling and pulling up on things at 8 months old, but was content to do that for a long time and didn't walk well until he was 16 months old. I don't think Lily will sit still that long.

Now this is really cool guys...

I am a part of a group of moms that get together to chat and share advice - we have a little message board that we fire questions and stories back and forth. There's girls from all over the world on it. They were a rock of support for me and kept updated through everything when Lily was in the hospital. One of the moms lives in Canada and runs races for charities and the proceeds go to whoever she decided she was going to run for. Anyways, they start back up in the spring and she told me yesterday that she's going to run the very next race in honor of Lily and in memory of Chloe, to raise money for CHD awareness!

I almost fell off my chair! I got tears in my eyes, literally... we have touched people in Canada, that we've never even met! We're going to be getting the word out there and raising money for a cause that is soooo often overlooked in the name of bigger, scarier sounding (but much less common) cancers and diseases. Congenital Heart Defects are the most common and most deadly birth defects that affect babies and there just isn't enough funding and information out there! Did you know that researchers are working on a way to close some defects like VSDs and ASDs through a catheter, or sometimes an incision under the ribs, instead of open heart surgery? Some day, families and babies like Lily may not have to go through what we did!

Okay, that's all for today. Lily was such a good girl last night, I fed her "pumpkins and pears" and it smelled really good, and most of it ended up on her bib and highchair. She cracks me up sometimes!

Halloween is coming

We took the kiddos to Mozingo lake last night for their campground trick-or-treating event. Collin was a ghost and kept walking around all night going "ooooo, oooo, OOOOOO" like a ghost would. All month he's been rambling on about how he wants to be a ghost, the kid could hardly contain himself. He was the perfect ghost.

Lily was a tiger cub and a cute one at that. She sort of looked like a boy in the costume, I even attached a hairbow to one of the tiger ears on her hood and I still heard plenty of "how cute is HE!!" But oh well. I know she's a girl. I didn't get any pictures - the wind has been CRAZY this weekend and it was bright and smoky from all of the campfires. But we are going to the citywide trick or treating on Thursday night, the uptown businesses open their doors for the kids and it's always a good turnout. I promise I will take some pictures in their costumes before the season is over.

Lily lasted until about 8pm before she'd had enough and we came home. She fell asleep on the way home and that was a challenge getting her into bed - I couldn't much let her sleep in her tiger costume so I had to change her. But she did good and woke once around 4 am for food - she hadn't eaten since 5pm so I wasn't surprised. Then she slept in until 9:30! Too bad Mommy can't sleep that long. It seems lately that I wake on the weekends around 7:30 - 8 and I'm up for good.

We had a relaxing day - watched the Chiefs almost win (heartbreaker) and the Nascar race. One day my knight in shining #88 green armor will get me a chase win. Alas, not today.

Just to clarify my previous post - I don't think anything is wrong with Lily. I'm not sure what to think about the CMH ordeal. I'm totally frustrated at their lack of response with such important information. I'm crossing my fingers that the Tuesday report comes in to St Francis quickly and Dr. G can review it and give me his opinion. I know he's not a pediatric cardiologist, but I also know that he knows when something doesn't add up. I will not hesitate to get a second opinion if he thinks I need to pursue that route. Our insurance is covering everything 100% at this point through the end of the calendar year, because we've maxed out our deductible and copayment. I know what symptoms to look for - Lily is gaining weight and is a pink baby at this point, unless something changes I will try to rest easy.

Sidenote to Cassi - thank you so much for your offer, if I need directions I promise I will ask! :)

That is all for now!

Drama drama

Lily saw her doctor back here at home today, for her 9 month well child check and a discussion of Tuesday's appt.

Today she was 16 lbs 12 oz, so I'm willing to bet there's a difference between the CMH scales and the Maryville scales... no way did she gain 4 ounces in 3 days. So I'll say 16 lbs 10 oz and call it good. It's hard to measure a squirmy baby, but she's hanging out at the 70% for height, around 27.5-28 inches, and 10% for weight.

Dr. G seemed frustrated at CMH's lack of detail and timely response. I told him that they were extremely busy Tuesday and Dr. Simon basically flew in and flew out at our appt, she was in and gone in 6 minutes and said that "things looked great." No mention of the enlargement, right ventricle muscle issues, mitral valve leakage - nothing. No details. What had concerned me the most about Tuesday's appointment was that Dr. Simon had said something to the effect of "lily is getting better every time I see her." Which we all know isn't true, because August's appointment wasn't good! So I basically told Dr. G - look, she has no symptoms, I'm going to assume everything is okay. There was still a slight murmur in August and he didn't hear a murmur today, so that would indicate that her enlargement has shrank and her mitral valve isn't leaking anymore.

At this point, Dr. G opened up Lily's file and realized that he hadn't even gotten August's report back from CMH yet. The last thing he ever received from them was about her surgery in June. So they call down there to request that both it and Tuesday's reports be faxed immediately. I go home, I get a call in about an hour from Dr. G - they got August's report but not Tuesdays. The August report they received wasn't even signed off on yet. Brenda (dr g's nurse) said she was giving it 3-4 weeks, that they'd call me when they got it and if I hadn't heard from them within a month, to call Children's and check on the progress of it.

So everyone involved is frustrated. CMH took good care of Lily and I understand that they're is busy right now, but it's irresponsible to delay this kind of information that long. I think Dr. G and Brenda are ready to wash their hands of them - they even said that if (IF) anything else were to happen with Lily or if I were ever concerned/wanted a second opinion that they wouldn't hesitate to refer us to Children's Hospital in Omaha. Dr. G said that cardiology has never been this slow before.

I'm starting to wonder what those reports say, and what the echo REALLY looked like in August, as well as Tuesday. The information we were given in August was not good, but now it seems as if the whole thing is being downplayed. I took it to be something of concern, something to monitor, and obviously we were brought back in 2 months for a reason. I clearly remember Dr. Simon being "dissapointed" - her words - in Lily's echo in August. And then on Tuesday, it's as if they almost wondered what the heck we were doing back so soon.

I'm thrilled if Lily is doing great... I'm willing to just "let it be" at that and move on. But if I find out that I worried and obsessed unnecessarily for 2 months, or if CMH cut corners or messed up anywhere, I'm going to not be so happy.

Okay, off my soapbox.

Breaking free

We went to Kansas City today for a cardiology appointment. I think I held my breath all the way through the echo.

And the verdict is... good news! Things appear to be shrinking back to normal like they should be. She said her weight and color look good. I could hardly believe my ears, I had prepared so much for bad news. I was like, are you sure? Heheh.

Now it's like... now what? I feel like a prison inmate set free, looking at daylight for the first time. This thing has consumed us for 9 months, for Lily's entire life, and we don't know what normal is or how to be normal, there's never been "normal" since the day she was born. It will be so foreign to not have to worry, to just sit back and expect her to grow, to not examine her for blue fingernails and lips. It's a mental adjustment and an emotional overload, but one of the good kind for sure.

God has been so good to us! How different things could have been. I've revisited this whole experience 100 times today... during the echo, waiting for the doctor, on the way home. I've thought about us, and her, and the others who weren't so lucky, and how much we have to be thankful for. I can't even put it into words. I can question "why" and wonder how life isn't what it's supposed to be to no end, but now it is time to move forward. Hopefully we can put this behind us. There are so many things that I wish hadn't happened and I wish I hadn't had to be there to witness, but I can't change it and wouldn't change the person it's made me today. Lily is one tough cookie - she's been through so much more in her short time here than most adults ever will in their entire lives.

Thank you all for your incredible amount of support, your undying prayers... just your presence in our lives has meant so much.

We go back in 6 months. That seems like an eternity!

Just passing time

Our Parents As Teachers chick, Elizabeth, came again last night. Collin just loves her. She worked with Lily first since Lily needed a nap. She was very impressed that she was sitting up finally, and that she was bearing weight on her legs and standing while I held her top half. She noted that she was very steady sitting for someone who just started sitting up, and that she loves to stand! She brought out a blanket to play peekaboo with and Lily loved it - it was white with different animals on it and Lily was fascinated by the animal pictures. I started naming the animals for her and Elizabeth said that was a great thing for me to do, it teaches her association skills. Lily took the blanket from me and held it up in front of her face and Elizabeth was amazed... she said it almost looked like she was trying to play peekaboo with it herself. Her intelligence is obviously there, she only seems to be delayed a bit in motor skills. Elizabeth encouraged us to bring out the highchair and scatter some cheerios or fruit puffs on it and see if she tries to feed herself. She said that Lily seems to be at about a 6 month old's developmental level in motor skills and handed us some sheets about how to work with 5.5 - 8 month old babies to encourage them with their motor skill development, since that's about where Lily is. Otherwise she seemed to be right at her age level for the way she babbles/vocalizes, and interacts with her toys and other people. We will definitely continue to encourage her fine motor skill development - grasping small objects, bringing things to her face, etc. If you put a toy in a box or tub, she will reach in the tub and look for it, and she kept trying to chase after a bottle with macaroni in it that Elizabeth had brought. She was rolling it away from herself and then stretching and reaching for it. I just know that if she could crawl she'd have been chasing that bottle all over the room! Elizabeth said she could definitely see progress from last time and was pleased!

Collin is so smart! He made me proud last night. While Elizabeht was working with Lily she gave him a bag of little plastic cars, trucks, and trains that are different colors to occupy himself with. He took them to the couch and promptly sorted them out by type, not color. He piled all the cars together, all the trains together, etc. She said she'd expected him to sort them by color and what he did was a step ahead of that! She also brought a white shower curtain that she'd written different letters on with a Sharpie, both capital and lowercase, and laid it out on the floor like a mat. She had two beanbags and would ask Collin where a certain letter was and he got a huge kick out of throwing the beanbags to the letter she asked for. She was hugely impressed that he knows all of his letter sounds and if she would ask him to find the "muh" he'd be able to locate the M. He had troubles with the lowercase and she said most kids do, that all toys and DVD's and such seem to only teach the capital letters. But she said she doesn't think she's ever seen a 3 year old be able to consistently identify all letter sounds. And she's been doing this a while, so we took that as a huge compliment. He knows his full name now, first middle and last, and we've been teaching him his address. She worked with him on recognizing his written name and on writing the letters in his name, but he still mostly scribbles. But he can draw simple shapes, like a circle and a square, and made his pointer fingers and thumbs into a triangle last night. She brought out some three letter word flashcards, like "hat" and "cat" and "sun" and had him sound out the letter sounds for each letter to see if he could put them together, and he didn't quite get the sounds to flow but she said that was very advanced and would have absolutely flipped if he could have done that correctly - that's very basic reading! Collin's major area where he lacks is social skills, and that comes from never having been in formal daycare. Our goal is to budget enough room for pre-school next year, it's a huge financial shock to us since we are getting such a good deal from our babysitter, but he would really benefit from it and needs it before he goes to kindergarten.

Well, that's all. I have some smart kids I suppose, and Lily will catch up and I'm sure she'll be crawling and walking before I know it, and I'll wish she was my little baby again! She still has no teeth, she was quite miserable last night, kept chomping on her fingers and had a hard time staying asleep and I fully expected a shiny new tooth this morning, but nope. We are going to Pickering today for a hayride at my sister-in-law's husband's parent's farm (follow that?) so that should be a good time.

3 more days till cardiology!

The wait is killing me.

6 days.

It's the kind of wait that drives a girl insane.

The kind of wait that keeps you up at night, mind racing, tossing and turning. I'm so beyond stressed out... I'm jumping into the deep end, I swear.

I could not sleep last night, for anything! I had this whole post wrote out in my head, and now I can't remember it.

We had a good day

It was just a normal day. We didn't have anything planned - the race and our football game was last night. Usually we spend Sundays eating popcorn and drinking beer, yelling at the TV while guys in too fast cars take left turns all day and bigger, sweatier guys tackle each other over a pigskin ball. However, the nascar race and the Mizzou football game were last night, and were disasters at that. My driver blew a tire 100 laps in and Mizzou slinked off the field with their proverbial tails between their legs, having lost and therefore lost the shot at the #1 ranking.
Needless to say, we went to bed dissapointed, and woke up bored. Thankfully, the Chiefs didn't play today or that would have led to more dissapointment, I'm sure... and I don't need any more of that this weekend.

So what does dissapointment and boredom lead to? Shopping. We went to St Joe and I raided Target and TJ Maxx, and basically stole some baby girl clothes. I got her two winter outfits (pants and shirts), a pair of jeans, and a winter coat by XOXO Baby that originally sells for $50... for a grand total of $46. Rock on. Retail therapy is fun, too bad it's not something we can budget into every weekend.

It was good to get out as a family and feel normal. The kids were good. We clogged our arteries at McDonald's and let Collin go wild on the playgym. I got some McDonald's monopoly pieces that failed to win me any money. Lily charmed everyone she met, and then they both slept all the way home. What more could a girl ask for, really?

Well, that's all I suppose. Counting down the days until cardiology - 9 to go. Let's hope it's a good one!

Another weight check

After the last disastrous weigh in at her shots appt, Dr. Golightly wanted me to bring her back in a couple weeks to monitor her. So I got Lily weighed today, she's up to 16 lbs 3 oz, so that is half an ounce a day for 2 weeks, which is better than 3 ounces in 3 weeks. That ends up being 15 grams a day for the past two weeks, which is the minimum Dr. Simon would like to see. When you account for the 35 days since her weigh-in September 5th, which was the last time it looked like she was gaining at a good pace, and the total of 10 ounces she's gained since then, it averages out to 8.1 grams a day, which is still much lower than the 21.5/day pace she was gaining at.

Some of you may wonder why I worry about this so much, but poor weight gain is often times (but not always) an indicator of poor heart function. So yes, I obsess. It may mean nothing, or it might mean something, at this point we will see when we return to cardiology on Oct 21st. Until then, keep us in your prayers.

Tagged!

This tag comes from Megan at http://isabellagudde.blogspot.com/. Here are the rules...

1. Link your tagger and list these rules on your blog.
2. Share seven facts about yourself on your blog--some random, some weird.
3. Tag seven people at the end of your post by leaving their names as well as links to their blogs.

About Myself
1. I love my small town and hate the big city, but I long for a beach and better shopping.
2. I am fairly organized at work but a total slob at home.
3. I talk to myself, often.
4. I can sing and play the piano, but I never get the chance to anymore because my son wants to play with me and my daughter screams because it's too loud for her.
5. I take everything too personally.
6. I met my husband at Walmart.
7. I am obsessed with keeping Lily's room very clean and tidy... everything gets folded and put away immediately and I'm constantly organizing her little shoes and hairbows.

I don't have 7 friends on blogger yet... :(. But I can tag

The Breuers at http://www.breuerfamily.com

and Kyle and Marilyn at www.marilynjohnson.blogspot.com

Lillian is sitting!

I am so excited for her, I had this personal goal that she'd be sitting by 9 months, and she beat it by two weeks! She is getting better at it every day, too. She can also roll over now, but she doesn't do it often. She loves to sit. She can't get herself into a sitting position, so I have to put her there and then fix her if she falls, but she can hold herself up for several minutes now and it's so darn cute, it makes me smile.

It's so good to have something so positive, to see her doing what all babies her age should be doing! I'm posting new pictures, too!

I think we might have found a solution to the constipation... we've been trying out the Similac Sensitive formula which I guess is sort of new, I don't remember seeing it before really. It's milk based, lactose free (the Gentlease is only reduced lactose). Since I had tried her on the Soy formula with no luck, it hadn't occurred to me to try a milk based lactose free formula... but apparently some babies don't tolerate Soy well either! She seems to have an easier time pooping, with no Miralax! Let's hope it lasts!

I will take her to get weighed this Friday or Saturday, two weeks exactly since her shots. Let's hope the numbers are better this time!!

Finally another phone call!

Good lord they can be slow sometimes. Anyways, Diane-the-cardiology-nurse called me back today and said she talked to Dr. Simon... and Dr. Simon told me to take a deep breath and that she really doesn't think that her weight is cardio related at this point. They really don't see how what was going on in there in August could cause that.

Whew.

They did tell me that she could have just hit a small plateau, to maybe weigh her in a couple weeks if it would make me feel better, to see where she's at. They reminded me that they did take her off the 24 calorie/ounce formula and that could have affected it, and I reminded them that that happened in August and she was gaining fine up until September 5th, so that I don't think that's the case. She seemed like she'd forgotten that this just happened.

Basically they said I could return her to the 24 cal formula if my pediatrician and I think that's necessary, but they really don't at this point. They didn't think much needed to be done, really, unless she starts losing weight.

Okay. I hope they're right and not being apathetic about it all. I'll take it for now.

Phone tag

She said she'd chat with Dr. Simon, but she thinks what they saw going on with her heart in august probably isn't bad enough at this point to cause such a dramatic drop in weight gain, unless something new has developed. She does think seeing GI might be a good idea. She will call me back. It's never ending phone tag.

She also mentioned that every baby scale is different, but it's probably not THAT much different to alleviate concerns - that 3 ounces in 3 weeks is really low and that to be gaining the minimum of 15 grams a day, she needs 7 more ounces and the scales are probably not that much off.

Lillian got all caught up on her shots today, she got her 6 month set. No more until she's 12 months, yahoo! We go to the health department to do them, it's free that way. Free is always better than not free.

When we got there, I figured - hey, they have a scale, let's stick her on it! And you know, I've done the math, obsessive mom me. Dr. Simon said back at the beginning of this mess, they like their "heart babies" to gain anywhere from 15 to 17 grams a day at least (0.52-0.59 ounces) and that normal babies can gain up to 30 grams a day (about an ounce). At the beginning, Lily was gaining anywhere from 15-21 grams a day, and then in the two weeks before surgery, when she was her worst, failed to gain any weight at all.

So today, I knew that since she was 15 lbs 9 ounces on Sept 5th and it's been 21 days, that the bare minimum of 15 grams/day would put her at 16 lbs 3.5 ounces. That was the target, but she's been doing fairly well and gaining at a good pace, I figured it would be more. At least, I hoped.

She was.... 15 pounds, 12 ounces. She's gained a whopping 3 ounces in 3 weeks. I even asked the nurse if that was right - could the scale be wrong? Nope, it was calibrated two weeks ago. Awesome.

That is a full 7 ounces less than the minimum she should have gained... wtf. Since she eats like a pig and gobbles up 6 ounce bottles and inhales whatever solid food she gets with a big sloppy grin... something's not right.

This means one of two things - something's wrong in her intestines that is preventing her from absorbing the nutrients and calories, or her heart is getting worse again, and rather quickly at that. This is a very sudden drop off, she'd been gaining well all the way up into early September. Since she has no reflux, she doesn't act like eating is bothering her, and she has no history of GI problems other than some constipation, my money is on the latter of the two - why would something develop out of nowhere so quickly?

So I've got calls into Children's Mercy and our pediatrician - he returned my call and his nurse wants us to see the GI specialist at CMH... not sure what good that would do. But whatever. What's another test, really. I didn't hear back from CMH today, my call didn't get in until 4pm and my doctor switches hospitals mid-day, she was probably at the south side clinic already. So I get to sit and stew all weekend - will she want us to increase the calories in her formula again, will she want us to come in sooner... etc. Is my baby going to keel over in front of me someday?

Like Robin Williams says, I need a drug that encompasses everything... f**kitall. Maybe they could market it as Fucitol. When you don't want to leave a warm bed on a cold dark morning... Fucitol. When you don't want to go to work... Fucitol. When you don't want to eat or drink... Fucitol. When you don't want to face the bad news that you know is coming... Fucitol.

Wasn't surgery supposed to fix this? I am really at a loss for words tonight, and I don't know why.

Ramblings

The nurse called us back and said that Dr. F thinks we should try increasing the Miralax to 3/4 tsp, up from 1/2 tsp. Her chart indicates that she can safely have 1 tsp every day. I guess we'll try the 3/4 for a while, I'm sure it'll work at first and then I can see her building a tolerance to it and us increasing it again and so on and so forth. I'm about to give up and go back to the Nutramigen on my own, screw it.



Sometimes at night, I just stand and stare at her. I have a hard time laying her down at night and a hard time getting her up in the morning - at night I don't want to let her go and in the mornings I don't want to wake her up, she looks so peaceful just sleeping. Last night she wasn't settling down and I just stood over her crib, petting her hair and running my hands over her face. I'd cradle her cheeks and she'd settle down and look all peaceful and sleepy. I could feel her heartbeat and how quiet it feels, relative to what it was before surgery. I can't help but wonder what's still wrong in there... I try to imagine what it looks like, and if it's working harder that it should be... if it's still enlarged, if her right ventricle is slowly shrinking and becoming blocked. I wonder if she's a ticking time bomb, if one day she's going to turn blue and I'll have to spring into action and race to the hospital. Every day, I examine her, I look at her fingernails, I stare at her lips and temples... "does she look blue to you? no, honey. are you sure? yes, honey, you are crazy... she's fine..." and I know she is, but it's a mother's job to worry.



I treasure these moments, where I stand there and drink her in and know that things could have been so different, I wonder what could have been and how lucky we are. I want to cry for all the mothers who've not been so lucky, whose babies have been through 2 or 3 or 4 surgeries, who've lost their angels and have to find a way to go on. I want to cry for Chloe's mom, and for Elli's mom, and for all they've been through and all they'll never know, and for the blessing of the days they had with their babies here on earth. The pain takes my breath away sometimes.



Thank you to all my fellow "heart moms" and mothers of babies with medical needs, who've been so supportive and know exactly what I'm talking about. We just keep marching on, day by day, and thank our stars for what we've been given!

I'm getting gray hair!

Lily is constipated again! The Miralax just isn't cutting it I guess, it's like she's built up a tolerance! It worked fine for 2 weeks, and now she hasn't pooped since Thursday. So I call the doctor again.

I talk to the nurse... of course my doctor isn't in the office today! *bangs head.* So I had to tell THIS nurse the whole story... again. This is getting old. Now she has to relay that story to the OTHER doctor... like a telephone game! I wonder how many details will get lost along the way. She acted like she thinks this doctor will want us to go back on the Nutramigen.
I don't care anymore. I explained to her, again, why we tried to switch back to Gentlease. We've tried everything to keep her "regular" and nothing works for more than a couple weeks. I'm sick of making her miserable and I'm very wary having her on a laxative... I definitely don't want her to become dependant on it. I think I'd rather drain my wallet than increase the Miralax dose, honestly. Guess we'll see!

Parents as Teachers went well. She said Collin is very smart and Lily is delayed. Well, duh. I think she's going to check on her development next month before anyone refers to anyone who might be able to help her development.

Our follow up since starting the Miralax was today. It went pretty well, and I'm glad we had it because she's developed her first cold. I swear the nurses are lazy... they don't like to strip her down for weight checks unless it's a formal "well child check." I had to ask her to do it... you'd think with how much I've been in there they'd understand that she has a heart problem and it's very important to get an accurate weight. This nurse today was our doctor's head nurse, too, I was surprised.

But anyways, her naked weight was 15 pounds, 9 ounces. She was 14 pounds 12 ounces naked on August 19th, and I don't count the other two weigh ins since then because she had clothes on. I'm a psychotic mom and do the math every time she needs to get weighed... you know, the whole "if she should be gaining an ounce a day, this is how much she should weigh based on her last weight and the number of days since then..." My math came out to 16 pounds, 4 ounces. Which she isn't, but our ped wasn't concerned... he said she's following the same growth curve that she always has and at least she's not dropping off. Actually, at her last weigh in she had jumped up the curve a bit and now she's back down, but we also stopped making her formula extra strength so she's getting fewer calories. I just take what I can get and try not to panic about it. If the doctors are happy, then I'm happy.

He said there's nothing I can really give her for her cold, at her age and with her medical history. He said if it lingers on for days they do make a liquid Claritin that I can give her 1/2 tsp of to help dry her up. I'm going to just let it run it's course... everyone is sick right now, you know?

I mentioned that the Miralax has really helped, she's been pooing twice a day, and last night's was almost runny. We're going to scale back to every other day... he wants to get her on the lowest effective dose. Some babies end up only needing it once or twice a week. Hopefully that's mine, but Lillian doesn't really have a history of making things easier on me ;D.
We have our first appointment with Parents as Teachers next Thursday evening, they are coming to look at Collin and talk to us about him, they have a program for 0-3 years and then 3-5 years old. I'm sure he's doing fine, but it'll be nice to have some interaction with someone else and get new ideas for games and things that will help him get ready for preschool next year. They are still deciding who they'll assign to Lily, they had a new girl they were going to give to her but with Lily's medical history and her developmental delays, I think they're considering putting her with someone more experienced.

That's all for now!

Doctor Tomorrow

Tomorrow we do a follow up with our pediatrician from our impromptu appointment on Saturday. He wants to see how she's doing on Miralax and get a good, naked, accurate weight. If her weight gain has dropped off, it will give us insight to how her heart is pumping and if it is working overtime again.

I'm uneasy giving her Miralax, but whatever helps her feel better and reduces strain on her body is fine with me at this point, I suppose.

Will update following the appt tomorrow.

A downhill turn

A continuation of that ridiculously long post... starting now from when things have taken a change for the worse.

Not the greatest
Posted Aug 19, 2008 4:40pm
Lily had her appt today at the cardiologist. There was good, and there was not so good. She's gained another pound this month, she's about 14lbs 10oz or so, so we're knocking on 15 lbs door. There is no fluid buildup around her heart or in her lungs, so we get to discontinue the Lasix and go back to the regular concentration of formula - no more extra strength! Both of these things should really help her constipation issues and hopefully soon we have a baby drinking normal formula (well, Gentlease) and pooping normally! Hurray for that!
Her surgical repair looks good. There is a tiny, almost immeasurable residual VSD from where her septal wall hasn't quite grown over the patch completely - this is normal and should close with time. The amount of backflow caused by it is insignificant.
Her left atrium is still enlarged more than Dr. Simon was hoping for. This is causing stress on her mitral valve because it can't quite close like it should due to being stretched and there is a small amount of leakage resulting from that. Her left atrium functioning number has gone up a bit more, though, so that is good! It's shrinking slower than we had hoped but it still seems to be improving.

The biggest concern for now is her right ventricle. The wall was thickened up due to all that shunting of blood back into it from the VSD and I guess it's only gotten worse. The muscles have spread up into the ventricle, causing hypertrophy and increased strain. I did some research and this is very similar to one of the other symptoms of Tetralogy of Fallot. Lillian is missing the pulmonary stenosis (at least for now!) and the misplaced aorta that would complete that diagnosis. Dr. Simon said that a normal pressure gradient in the RV is about 5 and Lily's is elevated to 16. This has the potential to develop into a blockage type problem, essentially dividing the right ventricle into two chambers, and those numbers get really serious when they reach around 40 or so. There is no medication we could have given or can give to actually shrink the muscles back down - either it's going to happen or it's not. Dr. Simon was dissapointed, but seemed hopeful that this will correct itself. But that's what the VSD was supposed to do, too. If it does develop into something serious, the only fix is another surgery. Luck is apparently not on our side.

I left pretty bummed. I don't know if I can handle the prospect of another surgery. I feel like this is a test... of my faith, or strength, or whatever. I'm trying really hard not to be pessimistic, but I had a bad feeling about today going into it. I couldn't sleep at all - I got about 4 hours of sleep last night. I feel like we're playing with fire here, like my time is limited and the days are flying by so quickly, marching toward a ticking bomb. What if this just wasn't meant to be? All I want is my daughter to be healthy. I never thought it would be this difficult.

Doctor run - Sep 7, 2008 6:33pm
I ended up running Lillian to the clinic here on Saturday morning, because she hadn't pooped in a week! She was miserable... and of course pretty much all they told me was "well, yeah, she's constipated." Well, duh. This has been such an ongoing problem. It's hard to say what to do, she did fine on the Nutramigen while we were concentrating her formula and she was still on the Lasix. Everyone kind of expected her to do well back on the Gentlease once we stopped concentrating it and took her off the Lasix, but that hasn't been the case. All we could see was a nurse practitioner who we've never met, so I had to explain the whole story and why we switched formulas in the first place. Everyone pretty much agrees that Nutramigen is designed for babies who have a true allergy to the milk and soy proteins, and Lillian doesn't... she doesn't have hives or GI bleeds or anything, it was just much easier to digest and much worth the expense to ease the amount of strain on her before her repair. And since it is so expensive and she doesn't have an allergy, per say, insurance most likely won't cover it. I explained that caro syrup, prunes, apple juice, fruit... nothing is working. Yeah, I could give her caro syrup in every single bottle and prunes three times a day, but that's not good for her.

So before we go back to the Nutramigen, we're going to try 1/2 tsp, a very low dose, of Miralax. We can give it to her in the evening, mixed in 4 ounces of apple juice or something she'll drink. If that doesn't work, we can try upping it to a tsp, and if that doesn't work, I'm fine with going back to the Nutramigen - I've spent a gazillion dollars on this baby already, what's another $200 a month ya know? We'll see I suppose.

She did get weighed, but it was quickly and with clothes on, so I'm trying not to read too much into it. She was 15 pounds 12 ounces, up from 15 pounds 6 ounces on the 22nd of August, but that was with clothes on too. She was 14 pounds 12 ounces naked on August 19th. At first glance, it appears her weight gain has slowed down somewhat, but like I said, it wasn't accurate so I'm trying not to panic. She should be gaining an ounce a day or close to it, and it's been 18 days since the 19th, so she should be about 15 pounds 14 ounces naked, and obviously she's not. She's probably about 15 pounds, 6 to 8 ounces naked. Something like that. But you know us "heart moms," we worry about our "heart babies" over everything... and we have stopped concentrating her formula so that could be leading to the slow down in weight gain, as well.

I really want to clear her system out of whatever is backed up in it. She's been straining so hard to poop that she's been spitting up and getting to where it seems very difficult to breathe. She's been taking huge breaths and they are loud and it's just too much strain for her - it's not right. I get so worried when she gets like that, and I've been noticing it to a lesser degree when she gets really mad or really overly excited as well. Of course I freak out, but she doesn't turn blue and before I totally panic I want to see what this Miralax does and hopefully it eases everything up for her. She's not breaking out in cold sweats or turning blue at all, not that I can see... hopefully it's not related to her heart.

It's hard to sit around knowing that there's something not quite right still, and that it could be getting worse. The waiting game sucks. She's such a personality - she's generally very happy and loves her big brother, when he talks to her or sings to her she lights up. She's not a laugher, but she's definitely learned to squeal and uses this skill almost all day, to where my ears hurt. She loves her swing and bouncy seat, but she's not a fan of the floor and really hasn't made any progress in the learning to sit or crawling departments. Still no teeth, either! I can't believe she is nearing 8 months old.

We are supposed to go back to our regular doctor for a follow up on this Miralax stuff in a week or two, I will update again, then.

An introduction of sorts

My name is Laura, my husbands name is Brandon, and we have two children, Collin and Lillian.

I created this blog as a public way of sharing our daughter's journey, from being born with a congenital heart defect, to open heart surgery, to recovery and follow up and facing the possibility of another surgery.

I've worked on a carepage for her since June, but I wanted to reach a bigger crowd in case someone else is going through this and needs to hear words of support and encouragement. I will start from the beginning, which means this will probably be a very long post, so bear with me.

Jun 3, 2008
Lillian Grace was born January 18, 2008, weighing 6 pounds 12 ounces. We learned 2 days later she had a VSD (a defect in the septum between her R and L ventricles). This has eventually doubled in size since her birth. She is not gaining a lot of weight, she was gaining about 0.7 ounces a day throughout April but that has dropped off again.

Jun 4, 2008
Lillian got a clean bill of health today from her pediatrician. She weighed 11lbs 8oz today, so she was up 12 ounces in 14 days! Yeah! That's right back on track with what she was gaining. She's eating on average 5 ounces of formula now as well, which is much better than the 1 or 2 she was eating... we got some "medium flow" nipples and I think that's helped, it's a bit less work for her. I just wanted to clarify, it wouldn't matter if she gained 10 pounds or nothing at all, the surgery is still a go. Some people have asked if no weight gain would postpone anything, and that's not the case. Her pediatrician wanted 12 pounds by surgery, but that was just a personal goal of his and in no way determines if we'll actually have the surgery. We will. And if she keeps gaining like this over the next week, she will be close to 12 pounds anyways! Everyone is just wanting her to be as big as possible to facilitate a speedy recovery. The bigger the better! Onward to next week and her pre-op testing. Will continue to keep everyone informed.

Jun 9, 2008
Our plan this week...

We'll come to KC on Tuesday night. We're staying at my grandparents but we have a couple stops to make first. We've gotta drop Collin off at my SIL's house, then we go to KC, and then we've gotta drop my doggy off at my best friend's house! 8:30 Wednesday morning is pre-op and then we go back to my grandpa's. Thursday morning (donno the time yet!) we go and get admitted and then we go back to surgery. Sometime on the weekend Collin will get to KC somehow and stay at my grandparent's house with us the next week. We didn't want to be away from him the whole time but we don't want him at the hospital. He'd be bored and it's probably kind of scary looking.

I think I'm going to have access to a computer in KC so I can post updates, assuming there's a place to connect to the internet in the hospital. If I can't, it'll have to wait until I get back to my grandparent's house, or I will have someone log-in to here and post for me.

Lillian was in a better mood this weekend and actually took a 3 hour nap yesterday morning! I have (finally) found a pacifier brand that she will take only when she is sleepy, and that has helped her to sleep longer. Every little thing helps for us right now! Even though we spent most of the weekend cleaning, doing laundry, and packing, it was a much less stressful weekend than I thought it would be because I got to see her pretty smile much more than normal. Please continue to keep us in your prayers, it's going to be a crazy week!

Jun 12, 2008
Change of plans. The lead cardiac surgery nurse died tuesday night. They've all worked together for 25 years and they've cancelled all cardiac surgeries for the rest of the week.

Not kidding.

I'm so pissed off I can't even see straight. I spent all morning on the phone with cardiology and spoke with our nurse and they all reassured me that the team made the right call and trust me, you WOULD NOT want them operating at this point under this kind of stress, blah blah... I've spent so much time and energy organizing this and rearranging my schedule and stressing out. I can't even believe it. I had a feeling something was going to fall through, I can't believe it actually did.

So we came back home yesterday, with the promise that I'll be rescheduled "as soon as possible, we all know Lily's case is more urgent than some of the other kids that got cancelled." But I can see this stretching into July and August and I can't wait that long. I'm not worried about Lily... she'll be ok. I'm worried about me. I can't live like this anymore.

Jun 13, 2008
It's rescheduled!

It's June 19, w/preop June 18th at 10:30am. That's next thursday!!

I told the scheduler she was my HERO. I feel 100x better. I was so afraid of a long wait, and the chips just fell into place and worked out for us.

Jun 18, 2008
We got done with preop today around 11:30, and then got some food lol. She was an angel until they drew blood. They did a physical and asked family health history questions. She checked out healthy and weighed 5.23 kilos, which is 11lbs 8oz, which means she hasn't gained any weight in 2 weeks. But oh well, I guess it's a moot point now. I forgot to ask how long she was. Then they drew blood and I left the room for that, because they needed to get a lot of it and they had to use a scalp vein. She did NOT like that at all. They tried to get a urine sample but the bag they attached to her to get it fell off haha. They did an EKG and a chest x-ray.

We have to be back at 8am and they are planning on starting around 9am. They are doing a surgery at the crack of dawn tomorrow and she is second, so our actual start time depends on how the 1st one goes. The whole process, from putting her to sleep to bringing her to ICU to recover takes about 4-5 hours. The actual surgery itself takes about 2. They will put her to sleep before they start any IV's (thank god) but there will be about 4 or 5 IV's in her, including the main line.

I can feed her formula up till 2am and glucose water or pedialyte until 6am, so that makes me happy, i was worried about having a grouchy starving baby to deal with.

I have to give her a special bath tonight with this surgical scrubby soap stuff. She'll hate it. She still hates her baths.

That is all for now. More tomorrow!

Jun 19, 2008 11:58am
Lillian is in surgery.

They just updated me to tell me that everything is going well, the lines and tubes are in place and they are starting the process. She will be on the bypass machine within the next 20 minutes. I would have updated sooner but it took a while to get wireless internet set up on the computer and connected, and I have no cell phone service in the waiting room.

Children's Mercy is really nice, and I hear they are the best. I am a wreck right now, I was fine all morning until I had to hand her over to the nurses. My mom and MIL are here, and my grandparents. My best friend Bailey and her husband are here. I will continue to update as soon as I hear something and can.


Jun 19, 2008 1:43pm
Surgery UPDATE She is done and closed up, they are moving her to the ICU and it'll be another hour or so before we can see her.

While in there, they also found a small ASD (hole between the atriums) and a PDA - a connection between the pulmonary artery and the aorta that is essential for fetal circulation, but is supposed to close shortly after birth. Hers didn't so he closed it.

I'm so glad it is over and we can begin the recovery process! It will be hard to see her hooked up to crap but it's all to ensure her health. Thank you again for all your prayers!

June 19, 2008 at 06:17 PM
We have seen her, she is in ICU and will be for a couple days. They will keep her asleep all night and try to wake her in the morning. She is hooked up to lots of stuff, i have some pictures I will be uploading. They said she is doing beautifully. Her heart is beating on its own at a steady pace around 155. She is still on a ventilator because she is so drugged up she wouldn't be able to breathe on her own. She looks peaceful. She has her breathing tube, like 5 IVs, a chest tube for drainage, pacing wires in case her heart screws up, and a catheter. All they had was size 3 diapers and they are GIANT on her, its funny. she has her pink blanket and tomorrow we'll bring her her stuffed piglet and some other home-y stuff. Not sure when they will try to feed her. I'm glad it is over and she is stable, thank you all for your continued prayers. Praise the Lord Jesus that everything went smoothly, God is great and I am so thankful. Will continue to update as I know more.

[IMG]http://img.photobucket.com/albums/v76/vitabrevis/Lily%20-%200-12%20Months/IMG_0404.jpg[/IMG]
[IMG]http://img.photobucket.com/albums/v76/vitabrevis/Lily%20-%200-12%20Months/IMG_0406.jpg[/IMG]

June 19, 2008 at 10:44 PM
Night one update. We are going to bed now. We have a room in the hospital's Ronald McDonald family room, it's very close to the PICU and quiet and private. Lily has continued to do well. Her blood pressure rose a bit and they had to lower the amt of dopamine she was getting. She keeps trying to wake up - they've had to double her sedative. Nothing, not even heart surgery, can keep her asleep. They are getting a bit of a kick out of her, although it is way too early for her to be awake. I told them she wasn't a good sleeper, I wasn't kidding. ;D They will definitely let her wake up tomorrow. Her chest drainage is starting to lighten up, but its still pretty red and bloody. They finally got her some diapers that fit :)

I'm definitely in need of major prayers here, though. I met another mom yesterday in pre op who's daughter was having heart surgery today to correct 4 defects. Her surgery was the same time ours was with the other surgeon, and I told her in the waiting room that I remembered her from yesterday and that I was sending her prayers and good luck. Her baby is across the hall from us and we were chilling out in Lily's room and the alarms started going off in Chloe's room. Her heart rate had dropped dramatically and everyone raced into her room and the doctor was moving her around and they wheel in this big cart of heart equipment. I lost it. I had to leave. It's like all the stress from all day that I've bottled up, I hadn't even cried yet, came out and I was shaking and nauseous and bawling. I can't get the image of this baby bouncing around on the bed out of my mind. The chaplain came by to talk to the family and me because I was so upset... the baby's grandma was a trooper and was rubbing my back and stuff, the mom had left for food or something (thank god) and missed it all. They stabilized her and there are still several doctors in her room but its not as frantic as it was before.

OMG, I just kept praying over and over. My confidence is shattered. I'm terrified that something else will happen to her, or to Lily. I kept thinking "this baby is gonna die right back there in the ICU across the hall." They donno really what caused it. It's such a slap in the face, a reminder that everything is so fragile and anything where the heart is messed with is so intricate... anything can happen at any time. Thank you all for your continued love and support. I'm so glad there is wireless internet here. I will continue to check in. Please continue to pray for Lily, and for Chloe. Love you all.

June 20, 2008 at 11:26 AM
Lily would not sleep last night for anything. The night nurse was like, I gave her enough sedative to knock ME out and she was still kicking around! She's definitely hating her breathing tube. Unfortunately it gets like this on the day they try to take it out, they have to wake her up enough so that she can breathe on her own but that makes her aware that she has it and she doesn't like it. I was in her room briefly after breakfast but I had to leave, Lily is upset right now and had tears in her eyes and it was hard for me to handle. They said she was such a fighter all night and into the morning, she was flipping up onto her side and trying to roll over and stuff. Heheh. They're having fun with her, breaking all the rules. I've brought in her stuffed doggy and a crib toy and it's hanging on her crib. Makes it feel more like home you know?

She had some heart rhythm problems overnight so they started her on a different heart med and turned on the temporary pacemaker so they are prepared if something goes wrong. But they said that she hasn't had any problems since they started the new med. I don't know anything about Chloe, the mom has been around this morning and is upset, the chaplain is still with the family and the curtains are drawn. I don't think I want to know. All the nurses can tell anyone is that she's had some setbacks. It really sucks and I am concerned about them. But everything is very overhwelming - there are some beautiful tributes to babies that didn't make it on the wall, and it's a very lovely but depressing place to be. I will feel better once the ventilator is gone and we are moving forward. I have surprised myself at how much I don't want to be with her as much as I thought I would. I am of no help right now since she is frustrated and doesn't understand and doesn't know that I am here. And the more I am here the more it wears on me. It's all very difficult to stomach sometimes. But I'll come back to this and hopefully soon I'll be able to tell you that the breathing tube is gone and we are all feeling better! Much love and hugs to you all!

June 20, 2008 at 01:18 PM
Well the breathing tube is gone! Yay! She is pretty congested and hoarse right now, poor thing her throat is sore from all that. They also took out the g-tube from her nose and the catheter. Now she has an oxygen tube in her nose. She looks better, but she is frustrated and is still upset. I keep petting her hair to calm her down. They will keep her on morphine and then later today and tomorrow start ibuprofen and oxycodone. She still has the pacemaker hooked up and cannot leave ICU until that is gone, so it will probably be sometime tomorrow before she goes to the floor. They drained a ton of mucous from her nose and throat. She sounds like a kitten when she cries. We are making slow progress, though.

On a sadder note, Chloe is not doing well. I talked to her mother... I went to give her a hug and asked her if she's hanging in there and she said no. She volunteered the information, I wasn't going to bother her. But she said that Chloe had a stroke last night and has brain damage, and they're not sure if she's going to live. My heart just breaks for her. Please continue to keep her in your prayers.

04:19 PM
Lily continues to do well. They are trying to feed her tonight, prolly as we speak. We left the hospital for a bit and are back at grandma's, I needed a shower and my grandparents are taking us to dinner. We'll go back in the early evening and I will stay all night again, if I get a room, and Brandon is going to come back to grandma's and then go get Collin tomorrow morning. She is still awake and frustrated, but they have stopped all her heart medications and removed the arterial line from her wrist - so no more blood pressure meds and one less tube! Woohoo! Her heart is holding it's own pace and her blood pressure is being checked every hour. They will keep the temporary pacemaker on in case her rhythm problems return, and they've left 3 or 4 IVs in and the main line IV in case they need to restart the heart meds. They're thinking we'll get to move to the floor tomorrow, assuming all goes well with her heart rhythm all night. So we're still progressing!

June 20, 2008 at 10:42 PM
Well, we have moved to the regular floor! A night early at that. She is down to Lasix (to make her pee), Zantac (to settle her tummy), and Oxycodone and Ibuprofen for pain. She drank a 4 ounce bottle while we were out to dinner. She is still on monitors for her heart, respiration rate, and oxygen levels. We got to the floor and she drank another bottle, took some oxycodone, and promptly threw up. So they had to move her again, change her bedding, etc... she wasn't too happy about that. Then they weren't sure how much pain meds she'd kept down, so they gave her a small dose of ibuprofen just in case. She's sort of asleep right now, not really... but she's quiet.

They took the main line out of her neck and her oxygen tube is gone, so her face and neck are tube and line free! It's a beautiful site. She has adhesive goo all over her and her hair, though, heheh. I am so glad she's doing well but was very surprised they moved her already... I'm nervous that something will go wrong because it seems to be too good to be true. I have uploaded some new pics, from our new "home" on 4th floor. Keep up the prayers and good thoughts! They are working! I do not know anything else about the other baby at this point, other than that she is still alive. I probably will never know her final outcome, since we have moved floors and I am no longer around her family. I can only hope and pray for a miracle. More later!

June 21, 2008 at 07:17 AM
Day 3 has started off pretty well I suppose. I slept in her room last night, as much as I could. The bed for me is really quite comfy but it's hard to sleep in a hospital. I slept solid from 11 to 3 and then they came to take her vitals, feed her, and give her more pain meds. At 4:15 she woke up upset, and threw up again. So after that it was downhill - they had to move her to clean her and the bed up, and they ordered some Zofran for her tummy and gave her some IV Morphine to help with pain since she's been vomiting her oral meds. So after they messed with her for an hour, she was hysterical. She finally got calmed down around 5:30, I dozed off, and they came to take her for an xray at 6. Awesome. When she got back from that she was grumpy and I found out it was because the nurse had only fed her 2 ounces! I guess she was afraid of making her puke again? So I got 2 more ounces and she sucked that down. It's been a struggle this morning, but you know what? I got to hold her. And she fell asleep in my arms and is sleeping now, and that makes it all worth it.

June 21, 2008 at 10:00 AM
Dr Simon has come in and listened to Lily... she says she sounds great! She wants an EKG done later, and really really wants to wean Lily off the morphine, that's not something I can give her when we go home, you know? She said nausea and vomiting are part of the recovery process for many babies, it's a side effect from all the anesthesia. I think she was frustrated at how medicated Lily still is, but I think the nurses were just trying to keep her comfortable. I'd rather have her medicated than in pain. I got a chance to eat some breakfast, it was cafeteria food and was all right I suppose. Looking forward to seeing Collin later, Brandon is picking him up and bringing him to my grandma's house today! Lily is still sleeping and has slept most of the morning. I'm not sure if it's a good thing or a bad thing.

June 21, 2008 at 04:49 PM
Well I don't have a ton more to say. Lily has been awake more this afternoon. I went to spend an hour or so with Collin since he's at my grandma's now. He was more interested in his trains than me! I come back and Brandon said that she pooped her pants good, which is progress since she's been constipated all morning. Going off the morphine has definitely helped her poop more, that stuff is constipating. He said she got frustrated when he moved her to change her diaper and after that she was in a bad mood. But then I got there and the nurse was there giving her more meds and Brandon said that she'd been smiling at him! But she didn't like the meds and so that went away. But I caught a little smile hehe. She has her hands wrapped around some linkadoos right now and she's dozing off. And of course, she pooped again as soon as I got into the room. She also ate 4 ounces for me just a few minutes ago. They just gave her an EKG and are giving her some oxycodone as we speak. I'm off to get some food. More later!

June 21, 2008 at 07:24 PM
Well right after I posted that last update she turned into a monster, she acted really uncomfortable and she was screaming and couldn't go to sleep. They called the doctor up to approve a dose of morphine and of course by the time the doctor got there she had calmed down. So they wouldn't write for anything. Which is fine, I guess.... I just don't want her to be in pain. But I understand their hesitation to give her any more morphine, she really needs to be off it and doing well on her other meds. She's dozy right now, she's been sleeping, I got some dinner. Brandon's best friend and his family and his girlfriend stopped by and got to see her monster fit-throwing episode, and then his SIL stopped by and just left, Lily slept the whole time she was here. So I'm just chillin, I'm pretty tired and hope that we both get some more sleep tonight. The floor nurse said that her chest tube is still draining out a pretty good amount, although it has slowed down, and that we might be in the Tuesday or Wednesday ballpark as far as going home. They need to keep her long enough for it to be safe to take her staples out.

June 22, 2008 at 08:15 AM
Last night was much better than two nights ago! She woke up around 11:30 but all I had to do was give her her pacifier back. The nurse came in around 1 and gave her the IV meds that she is still on - Lasix, Zantac, an antibiotic, and Heparin. She got some ibuprofen then and ate a little bit. She slept until about 3:45 and she got really grouchy, so the nurse gave her some oxycodone - the dose had been available since 3 am but Lily was sleeping soundly then so nobody bothered her. She was grouchy for a little bit but it was nothing like the night before last, she calmed down easier. They came to take her for her chest x-ray at 6am and she didn't fuss at all, I stayed in the room and slept. She was back in 15 minutes and went right back to sleep in her bed. They're going to try to switch to oral Lasix (which is her pee-inducer) today, and wean off the Zantac if possible - hopefully her tummy is all settled down. She has to have the antibiotic until the chest drain is removed. The heparin is to help prevent blood clots and stuff and I'm not sure what the plan is for that, I think she only gets a very small dose once a day anyways. The cardiac surgery nurse came in right after I posted this, and told me that Lily was really close to getting her chest drain out today but that there is still just a little bit too much drainage, so they are shooting for tomorrow. She said that they do send local people home on the same day that drain is removed, if they want, but since we are out of town they'll most likely keep us. She also felt around on Lily's chest and said she didn't have any staples haha. She said she'll leave with steri strips but we don't have to worry about staple removal. Funny - nobody's looked under that dressing so no one really knew. So it looks like anywhere from tomorrow to wednesday. I'm highly suspecting they'll try to send us home before wednesday. She's made very speedy progress. I am very nervous taking her home, I was expecting a much longer hospital stay and I'm still scared something will go wrong. But she's doing well, and this is a good thing I suppose!

June 22, 2008 at 03:37 PM
Lily just keeps trucking along. I hope we get the drain out tomorrow - they said she'll be more comfy after that. She gets ibuprofen every 6 hours and oxycodone as needed. It's hard sometimes to tell if she's in pain or just grumpy, when she gets upset. She's gotta be bored off her mind, I would be if I were lying in a bed hooked up to crap. She just got some more ibuprofen and if she gets grumpy I can ask for the stronger stuff, but right now she has dozed back off. I keep forgetting to ask them the name of her antibiotic.

June 23, 2008 at 09:13 AM
Lily threw up again last night out of nowhere, it was nasty, they finally gave her a sponge bath. I guess 3 times puking is the limit before they decide to clean the baby up. ::) Our night nurse was the same girl we've had since we got here to the floor, and I really like her. Unfortunately she's off tonight. Bummer.

They are pulling her chest tube as I type this. So we are tube and wire free! We will be going home tomorrow. They're going to teach us aftercare later on today. I'm thrilled this is all going to be over. Hopefully her tummy settles down. I can finally put a shirt on her. I'm starving right now and once this is over will be going for food for sure!

She did not like that tube being pulled! I saw it come out and was like OMG - it was HUGE. Gross! But she's got a little bandage over it and a little tee shirt on now and it looks so good to have her in a shirt haha. She's on her way down to x-ray, she LOVES the little wagon rides she gets down to radiology. They said she'll be so much more comfortable now that she's got that tube out. They took the dressing off her incision and she's got steri strips over it - it's scabbed but it really doesn't look that bad, it's not quite as long as I thought it was. So all is well, so far, today!

June 24, 2008 at 10:25 AM
People are coming in and out and checking her out and making sure she's ready. We have to wait on her prescriptions to be filled and discharge papers to be finished. She had a rough night, she was very restless and grouchy. I'm pretty tired. She has ate well today and pooped good this morning. She's wearing a little pink side-snap onesie. The snap things are very handy for getting her dressed and checking on her incision and stuff. Aftercare seems very simple. We're going home with a prescription for Lasix and one for Oxycodone, and I also have instructions to continue the ibuprofen every 6 hours - it also acts as an anti-inflammatory. I can give her a regular bath after her follow up on Thursday - that's 7 days after surgery so it should be safe. She has steri strips over her incision and they'll fall off in about 10 days. No lotion or cream on the incision area for a month, and I can't lift her from under her arms for at least 2 weeks. She is very sore. I have to scoop her up, like supporting her neck and bottom area. It's a little awkward.

She has three follow up appointments with people on Thursday, so Brandon is getting my dog from Bailey and going home this afternoon and I am staying with Collin and Lily in KC at my grandma's for two more days. There is no point in making the drive home and then turning around and coming back in 36 hours. Gas is ridiculous! She is in an awesome mood right now. She's kicking and scooting down the crib, and she's been chattering this morning. It's amazing how resilient babies are. She has bounced right back and is almost normal.

This whole experience has been very overwhelming - it has brought us closer and brought me closer to God. It has taken us through the darkest times, through the heartache of watching other babies suffer, to the joy of watching my baby heal and be given a chance at a normal life. Miracles really do happen, and prayers are answered every day.

June 24, 2008 at 05:30 PM
Well we are back at my grandma's. Brandon left for home b/c he has to work tomorrow. Me and the kids are staying until Lily's follow up appts on Thursday. It's going to be a long 48 hours.

It's such a relief and emotional letdown to be out of the hospital, I'm very physically and mentally exhausted and cry at the drop of a hat. I just can't even believe what we've been through in the past week. I don't think it's hit me yet, I've just been go go go. It makes sense to stay and save on gas, but I miss Brandon already and just want to be in my own bed. I do not want to go back to work. Now her care is up to me and I don't have the security blanket of the nurses. I'm scared and I'm ready for it to be over. It all happened so fast but in some ways, I feel like this has just begun.

June 25, 2008 at 01:14 PM
Lillian has been a different baby today. I don't know if it's because she's happy to be out of that hospital or if it's because she feels a ton better. But she's been smiling and kicking and reaching for her toys. She slept last night from 7:15 to 8 and then 8:30 through the night. She only woke up a couple of times for her pacifier, and then I fed her around 7am. She hasn't seemed to need her oxycodone yet today. She's only gotten fussy when she was bored. She took a 1.5 hour nap this morning and she's back asleep now. She's taken her meds for me good today, just her ibuprofen and her Lasix. I'm really thrilled that she seems so happy - hopefully it keeps up once we go home to OUR house, where she's been before and is probably bored with!

She has a small stitch below her incision where the drain was in - we get that stitch out tomorrow and then she can have normal baths. I already washed her hair, though... it reeked! And a girl can't have stinky hair! I will continue to post with her progress! She's making giant leaps forward every day!

June 26, 2008 at 06:51 PM
We are home! For real! Our home! It feels great!

Lily has been grumpier today, but I've been able to manage it with naps and ibuprofen. She hasn't needed her oxycodone. She had three follow up appts today. She had an ECHO (which they will call me with the results of) and an x-ray (which looked great!) The x-ray is to check the placement of the wires in her chestbone and to make sure there is no fluid buildup in/around her lungs. I asked about her growing bones and the wires and such, and they said that her chestbone will fuse back together down the middle and then grow around the wires! Ack! How's that for weird! They said she'll always have them and they will show up at every x-ray she ever has.

We also met with the surgery team. They removed the stitch where her chest tube was and removed the steri strips. They fall off after 5-10 days and they've been on since immediately after surgery, so 7 days, and they said her incision looks so good they could come off. She only has a small bandaid now at the top of it where a scab peeled off with the steri strip. It looks sooo much better. Some of the scabbies are gone and it looks a lot less menacing. I will definitely have to take new pics! She is napping right now but when she wakes up she'll get a good bath, they gave me some adhesive remover and if that doesn't work I'll use some baby oil. She'll hate it, but she needs it because if I don't get that adhesive off her from where her steri strips and IVs were, she'll break out. Her neck already has a rash on it from where her main line IV was.

I've been unpacking some stuff and there's laundry to do, and I need to make a Wal Mart run because we have no food or anything to drink around here! I'm drinking a Bud Light with Lime lol. I guess when it's all you have, it's a good excuse!

Some are wondering how I'M doing, and right now I'm doing surprisingly well. I'm tired and I'm still waiting for it to all hit me - that this actually happened and it's all over. I was very emotional Tuesday when we were discharged - it's a huge emotional letdown, but it's a good one. A week ago we were in PICU! It's crazy how fast she has bounced back, but they tell me it's not unusual for babies to recover fast. I met two other "heart moms" today at follow up, one of them had surgery last Tuesday and he's doing well too! I still think about and pray for Chloe every day. I'll never forget her and I only hope and pray for the best for her family. I never thought I'd be so happy to see Maryville in my life as I was today when I pulled into town. My own bed is going to feel fantastic tonight! I'll continue to post often about how she is doing - everyone's love and support has been overwhelming!

Jun 27, 2008 9:51am
Well Lily got a good bath last night and she smells better, but she didn't like it lol. She's napping right now and when she gets up I'll take her to walmart. My MIL took Collin today so I have a chance to chill out, do some cleaning and stuff, and maybe even squeeze in a nap myself.

She had a rough night, I think her schedule is just so messed up right now. She was a grouch yesterday evening so I gave her some oxycodone, and then she was up twice before 4 and then when she got up at 4 it took a long time to get her back to sleep. She was really unsettled. I gave her some more ibuprofen then. She only needed her oxycodone once yesterday, she's definitely improving pain-wise. I can't wait for her nights to get straightened out again, I'm dead tired and I felt like it was my responsibility to get her last night since I didn't have to work today and Brandon had to work at 7 am. I got spoiled having a good night time sleeper and now it's a bit messed up. It is definitely Brandon's turn tonight!

She's been fairly happy this morning. I need to get off this computer and do some laundry or something. I haven't even ate breakfast or anything because we have nothing to eat. No milk for cereal, no bread for toast... I should see if we have some eggs!

More later!

Jun 27, 2008 7:24pm
Julie from cardiology called about Lily's echo yesterday. It's good, not great but good. She said it's definitely better than before, which is good since she had surgery lol. Basically, both of Lily's ventricles were significantly enlarged because her heart was working overtime to compensate for the large VSD. She said the surgical repair looks great, there are no holes left, but that Lily's left ventricle is still somewhat enlarged. She said this is fairly common and compared it to a water balloon - if you take a tiny balloon and fill it up with water and then drain it, the ballon is not going to be the same size it was originally. She said that Lily's heart may take months to adjust to not having to work so hard and return to a normal size for her age. It shouldn't cause any problems, but she'd like us to see Dr. Simon before our originally scheduled appointment on August 19th, and that she'd check the schedules and call me next week.
She said that Lily should start to gain weight at a faster pace and that everything else looks great. So we're still making progress but of course I will always worry until everything looks perfect! It's my baby, that's my job!

Jun 30, 2008 9:12pm
Back to KC on Wednesday. Eeek! Julie called again and said Dr Simon wanted to see us this week. I knew they were going to move it up, but 2 days? Wow! This driving is killing us, it's 90 miles one way! I guess it's all for Lily's health, but holy moly. I don't know what they expect to have changed in less than a week from her last echo. I donno if they're even going to do another echo, I think Dr. Simon definitely wants to go over the results though. The more I've been around her, the more I realize she tends to freak out and be extremely proactive. Which is good, I guess, better than lazy.
Now I'm worried - I know they said that this should take care of itself but I can't help but wonder what all the rush is for?
I went back to work today Lily was pretty good for the babysitter, she got some ibuprofen at 2pm and then I gave her more at 8pm. Still gotta stick to that 6 hour schedule, until I'm told otherwise, which is possible Wednesday. I wonder if they'll put her on a different med to speed up the shrinking of her ventricle? Is there a med that does that? I wonder if they'll make me go back to the Lasix twice a day. Babysitter said that Lily was pretty happy until about 3:30 and she got really grumpy until she nodded off, right before Brandon got there.
So I suppose it was a successful first day back. Guess I'll have more to add after our appointment Wednesday.

Jul 2, 2008 6:52pm
Well our appt today went pretty well. She got the works - weighed, measured, blood pressure, EKG, and Echo. She was super throughout it all, I think it's routine for her now haha. She's gained about 8 ounces in 6 days, which Dr. Simon called "a ton." When she got weighed last week she was 11lbs 12oz with clothes and a wet diaper on, so take off a few ounces. Today she was 12lbs 2oz - we've finally broken the 12 pound mark lol. Her EKG looked good. The echo looked better.

Dr. Simon explained that they give the heart a "functioning" number to measure how it's working. Her left ventricle is still enlarged, and the number last week was lower than the normal range. Which Dr. Simon said is normal for right after surgery - she said the normal range is 60-70, and they're used to seeing heart babies get about 50-55 or 55-60 after surgeries. But, she said Lily's number last week was 40! She said Julie saw that and talked with Dr. Simon about it and that is why she called and had us come in earlier, since that is quite a bit lower than they were expecting. But she said today her number was 49, so that is better and it should continue to rise. She said "bottom line - Lily is improving." Yay!

She also said we can go off the scheduled ibuprofen and give it as needed. She's keeping her on the Lasix once a day to prevent fluid buildup and swelling during recovery. She felt around on her incision and Lily just stared at her, which Dr Simon said was good since that shows that it's not really bothering her. She said the incision looked great, if not a bit dirty ;D and I shouldn't worry about cleaning it good and getting soap and water on it. She also said she is breathing great and her bp looked good and oxygen levels were fine.

So all around good news - we go back on August 19th, about 6 weeks from now. Couldn't have asked for a better appt, really!

Jul 6, 2008 6:29pm
Hi all. Hope everyone had a fun and safe 4th of July.
Lillian was a disaster that night! She slept from 7-8 pm and then screamed and cried for over an hour. She was fed, changed, etc and had been given ibuprofen at 4, so I couldn't give her anymore. We were at my sister in law's house, cooking out and shooting off fireworks. I ended up running home with her - she screamed the whole way home. I gave her oxycodone, which she hasn't needed in a few days, and drove back to Tiffany's with her and she fell asleep. She slept while I moved her from the car to my niece's room, slept the whole time we lit off fireworks, slept when we moved her back to the car and into the house, and ended up sleeping until 9:15 am! I about had a heart attack when I woke up and realized what time it was!
Yesterday she didn't have any pain meds at all until night time and I gave her a dose of ibuprofen before bed, and she slept all night, from 8 pm to 6:45 am.

Since then she's been happy. She's ate some baby food - she LOVES bananas but I discovered they constipate her which is unfortunate, since she just eats them up and they make her grin and squeal. She also loves squash, applesauce, and peaches.

Her scar is looking better - the scabs are gone and she isn't bothered when I touch it so I've been able to clean it up good. It's been 2.5 weeks since surgery and she seems to be more comfortable, I've been able to pick her up under the arms and she doesn't seem to mind - I'm still very careful and gentle when I do it though and I use her back and hips for support still. But it's nice to feel like we are getting back to normal.

Today is my birthday so we drove to St Joseph and did some shopping, got her big brother some new shoes. She handled the trip well and is happily swinging right now.

Jul 11, 2008 8:02am
Lillian continues to do well. She is still on her Lasix once a day and ibuprofen as needed. Every day I get home from work she looks a little fatter. Her thighs are filling out and she has the beginnings of a baby fat roll haha. She vocalizes a lot now, she's always chattering, cooing, or crying :). She has found her feet and tries to chew on them. She acts like she's really teething, I keep looking for a tooth but there's nothing there.

Her incision site looks great, I need to take some new pictures and post them. I'm surprised at how good it looks for only being 3 weeks post op.

Please continue to keep Chloe's family in your prayers. I was searching for her online, because I was going crazy not knowing how that sweet baby turned out. I found her obituary. Chloe Robinson earned her angel wings at 2:09 pm, Saturday June 21st - she died at Children's Mercy. She passed away less than 24 hours after we left the ICU, she was gone before we even left the hospital and I didn't know it. My heart literally aches for them... I cannot imagine what they are going through. No one should have to lose a child.

I am once again reminded how fragile life is, and how you can be here one moment and gone the next. I am so thankful my baby girl is healthy and happy and will lead a normal life. Our prayers for Lillian truly were answered.

Jul 22, 2008 9:44pm
Her 6 month checkup with her pediatrician was today! It went really well. She's 13 lbs 8 oz! Everybody dance! She was up 1lb 6oz in 3 weeks... and 2 whole pounds exactly since surgery! That's definitely a good gaining pace. She was 25.5 inches long and 16.25 inch head circumference. That's 5-10% for weight, 25-50% for length, and 10% for her head. So we're at the bottom of the charts! Better than off them!

He listened to her heart and was like "that sounds great!" He's so funny, he doesn't see much of this kind of stuff up here. He was like a kid in med school again... "that's so cool!!" He's super impressed with what they can do and said her incision looks and feels great. I mentioned her developmental delays and he said that was normal and he wasn't going to get concerned until closer to 9 months - if she's really made no progress or very little progress by then he'd consider physical therapy or an EI specialist or something like that. The people the hospital were supposed to refer me to never called me so whatever, I'm not going to push it just yet.
I mentioned trying to wean her back to Gentlease formula and he said we could go for it if we wanted to, but if we were going to try that we really need to commit to it for about a week or so. He said that's how long it can take for a baby to really adjust to it and if we only go in halfway or keep going back and forth she's just going to keep getting an upset stomach. If she gets constipated during that week (and she very well could) he said we could try a teaspoon of caro syrup in one or two bottles a day or if that doesn't work he can give us some stuff they make... i think it's Miralax, only in a baby dose. He said we might be surprised what a week can do and she might re-adjust to it fine by then. If she doesn't, we can try again once she goes back to drinking regular strength formula. It might be something we just can't do while her formula is still being concentrated.

He wants to see us back in a month, right after her next cardiology appointment, to check her weight again and review what they think. At that point her meds and her need for extra strength formula will be re-evaluated and we'll go from there.

No shots today, we do them at the health department cause it's free that way and I need to schedule them - she has the all clear now to get back on track with those. She's a round behind, we had to postpone her 4 month shots because of surgery. So now she's playing catch up with those.

I'm sooooo glad to keep getting good news. It's such a relief and a reminder that we are truly blessed!

Aug 12, 2008 11:05am
Lily is still growing. She's no closer to rolling or sitting but yesterday I put her feet on the ground and she put some of her weight on them and moved her feet like she was walking. Her next cardiology appointment is Tuesday the 19th and then she sees her pediatrician on the 22nd. Hopefully she's gained enough weight that we can stop the 24-calorie formula recipe. I'd like the Lasix to be discontinued as well but I know they keep heart babies on that for a while sometimes. Guess we'll see!

Every day I go see her smiling face, I am reminded all over again of how lucky and blessed we are! Life is beautiful!