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.