Eat Your Heart Out Anne Geddes

My favorite!

She looks like she's yelling at someone here. Probably me for taking these pictures.

Just had to share these pics I took of Maddie on Christmas evening.

Happy Holidays!!

Aren't they beautiful? Why is it everyone always gives Dave a look of pity for having 4 girls?:-) It was so nice having ALL of our girls at home for Christmas...FINALLY!!

She's Here!!

Well, I'm a week late in getting this out, but I didn't get out of the hospital until Saturday and have been trying to recoup. Just like I've been telling people, this baby was like her two oldest sisters and didn't want to adhere to any C-section date...which was scheduled for December 2nd.
Madelyn Dee arrived on November 19th at 7:59 am. She weighed 7 lbs 8 oz (my biggest) and was 20 in. long (just like Sydney).

Not to be outdone by her sisters' births (Sydney was breech, Reagan got cut on the face during the C-section, and Ellie and all her complications), Maddie had her own surprise for us. She decided to show up on Reagan's birthday!! Yes, our girls have their own way of trying to get attention. So Reagan had to open her presents up at the hospital. I really don't think she minded, but we'll see in a few years when it kicks in that she has to share her birthday with her sister. I'll write more later and throw in some pics of the girls with Maddie.

On Her Way!!

So I realized it had been a while since my last update and I left everyone in limbo. Well, a week and a half ago, the dietician came and weighed Ellie. She had lost little weight, but she felt this was okay since Ellie had been gaining so much and had actually been getting too many calories with all the milk. She approved 2 more hours off the pump (11 total) and encouraged us to try 1/2 oz more of milk at each meal. Ellie did better than that! In fact, one of the days she had 12 oz!! This was a new record! Okay, I need to clarify a bit. She is not actually "drinking" it from a cup. She tends to like it thicker (I use a drink thickener to do this) and a lot of times I spoon feed it to her. Sometimes she lets me tip the cup in her mouth..but I figure, whatever we can do to get her off the pump. Well when the dietician came this week, she weighed Ellie and it was a 9 oz gain from the week before (21lbs 3oz)!! She was very happy with the progress. So happy that now she is only on the pump for 9 hours (that's sleeping hours only!) and what is in the pump is half formula and half water!! Wahooooo! She also said that Ellie is really close to being off the pump!!!!! I never thought she'd move this fast. She will check her again in 2 weeks. The next steps, in case you're wondering, would be to move to only water at night and then to completely off the pump. That's how close we are~!!!!! Can you tell how excited we are ? The girls are excited too because now they don't have to worry about tripping over pump cords.

As if this weren't enough, she had another tooth break through...we are at 12 total now. It's hard to believe that 10 of those have come in since May. And....she said "ball" very clearly last week when early intervention was here and then I got her to say "bye"!! I have also moved her bed completely flat (I've been slowly moving it from an inclined position) and put crib bumpers around. This seems to be helping her with sleeping at night. I spoiled her 2 weeks ago by letting her sleep in bed with me and it's been hard keeping her in her crib every since. But she does like the bed flat now. It is easier for her to roll around, sit up and play in and she really likes to hold the edge, pull up and down and peek at who is on the other side. This is so much progress for her. I told Dave that I really believe she may be crawling or close to crawling by Christmas. She is already working her way all around the living room scooting and piveting on her bottom. It's hard for the girls to remember she can get into their stuff now.

Finally, a quick reminder that the Buddy Walk is the 18th and there is still time to donate. We are so excited to finally participate this year. Especially since she was in the hospital during it last year.

We Need A New Goal For Buddy Walk!!

Wow!! Thank you so much to all who responded so quickly and signed up for Ellie's team, made donations and/or passed the word along to friends and family. Thanks a bunch also to my sister Shelly for hosting a last minute garage sale to raise funds (she did practically everything...all I did was bring stuff over to sell). She set up a sign at the entrance letting everyone know what the funds from the sale would be used for and some people didn't even buy anything, but just gave donations. We made $350 to contribute to our team!! With that addition, our team reached the $1,000 goal in 5 days!! I'm setting a new goal, so keep passing the word. We have until October 11th to collect donations. You can also still register to be on Ellie's team, your t-shirt will just not have Ellie's Mission on the back, but we will know you're with us!!

As for Ellie, she continues to be busy. She now has a total of 11 teeth! I believe 5 of those were just in the last few weeks. She has also figured out how to get into a sitting position from being on the floor. Unfortunately, it is the wrong way (she does the splitz, bad on her hips). We've been working on the correct way, and she is getting soooo much better at it. We've also gotten her Hip Helpers (they look like biker shorts that have been sewn together). She has to wear them twice a day for 30 minutes. She does not like them. They really make her work hard and don't allow her to be so flexible with her legs. It really seems to be helping her get stronger.
The big news: 2 weeks ago we were told we could take her off her tube for 9 hours straight a day!!! This has been so awesome!! It is so nice to pick her up and not worry about a tube. Unfortunately, the girls have forgotten to be as careful when she is hooked up, but I just keep reminding them. The other big news: She said "Shoes" and "Ball" (ball is not as clear, but is definitely what she means). I think Dave grinned from ear to ear when he heard her. Her signing is sporatic but she has made signs for milk, more and drink. If she wants to talk instead though, I am very okay with that!!

A Subject Close To My Heart--Buddy Walk

This is a copy of an email I am sending out today. In case, I've missed your address, which is entirely possible, please take a moment to read it and/or share our website with others. THANK YOU!:

Dear family and friends,

Many of you know what our daughter Ellie has been through in the past year and a half and many of you have helped us out in so many ways. To this we say Thank You so very much! What you may not know is that we found out that Ellie would be born with Down Syndrome about a month before she was born. At the time we received the diagnosis, we were given a packet of information from our doctor's office. We didn't know a lot about Down Syndrome at the time, so we read everything we were given. We sent in the reply card enclosed and the Kansas City Down Syndrome Guild sent us a huge package full of books, brochures, a DVD, and even some gifts along with a very nice letter letting us know that they were available when and if we needed them. We also received a call asking us if we would like support and information from another family in our area who had a child with Down Syndrome. At the time, we declined. Her medical issues and just the knowledge that she would have Down Syndrome were incredibly overwhelming. But, what we did do was read the info and books they sent us cover to cover. It was this information and one of these books that gave us the knowledge we needed to ask the right questions after Ellie was born. It was reading one of these books that led us to ask for the Echocardiogram that discovered the hole in her heart. I'm sure the hospital would have done this anyway, but in a situation where you feel completely powerless, it gave us a little bit of power. The doctors appreciated our newfound knowledge and we're sure this is why they were able to discuss Ellie's situation with us so candidly.

The reason we're sharing this with you is because we are participating in the the Buddy Walk this year. This is the Kansas City Down Syndrome Guild's main fundraiser. The money donated is used to send out packets of information to doctor's offices like mine, to buy books like the one we received and send them in care packages to families who have just received the news that their child will be born/has been born with Down Syndrome. It is used for activities that allow families of children with Down Syndrome to interact and learn from each other and it is used to help families, whose child has to be hospitalized, offset some of their costs. And these are are only some of the ways in which we have been helped by the Guild. There are many more ways in which the money that is donated to them is used.

Please consider visiting our Ellie's Mission team site at http://www.kcbuddywalk.org/ . If you would like, you can make a donation to the Kansas City Down Syndrome Guild from the site or you can join our team, help us to raise money and walk with us at Arrowhead Stadium on Saturday, October 18th. If you decide to join our team, please sign up by this Friday, September 19 so you can have our team name on your shirt!

If you've gotten this far, thank you for taking the time to read about a small part of our journey no matter what you decide to do. Please feel free to pass this email along to any of your family and friends.

David and Natalie Wonnell

Update

I didn't mean to stay away so long. So many things happening around here. Sydney and Reagan started school. Sydney loves 1st grade. I was worried about how she would handle a full day, but she actually adjusted really well. Her favorite thing though is taking the bus to Dave's school after her school is out and playing with some of her new friends until his workday is done. Dave says she has so much fun, he has to really talk her into getting into the car to come home. I miss not getting to see her so much, but I know she is having a ball. Oh, and she was chosen by her teacher to be this month's "High Five Club" student (has displayed the characteristics of trustworthiness, caring, citizenship, responsibility and respect). Her picture will be hanging on a bulletin board in the lunch room. We are so proud of her!!

Reagan is doing well too. She likes getting to leave with Sydney and Dave in the morning. They drive to Dave's school then a bus takes them to the elementary school. We hear from her teachers that she is very good in school, has great manners and is kind of quiet (yes, you heard that one correctly...a surprise to us). The only difference that I have noticed in her lately is that she is very clingly. She tells me a lot that she misses me when she is in school (she goes M-F in the morning).

The newest girl is doing fine. I had another sonogram yesterday and there is no sign of impending labor. Docs thought all looked well. She is looking healthy, weighs 2lbs, 8 oz (I think) and her growth shows her 5 days ahead of schedule. She does appear to camera shy. They tried to give me a 3-D shot of her face put she wouldn't take her arms down. As for names, we still have no clue.

As for Ellie, she has been continuing with her growth spurt. She now has a total of 9 teeth! Yes, they have been coming in like crazy. 2 just in the last week and 2 more almost ready to break through. She is pivoting all over when she is sitting (moving herself in circles) to reach what she wants. We have been practicing getting her on her knees and standing. It's hard work for her, but we've been seeing improvement. She waves hi and bye now (though not always right away) and loves pat-a-cake. She has figured out how to do the "roll it up" part with her hands and has gotten better with the "throw it in the pan" part (throwing her hands up in the air--this is hard for her). Just Friday, she surprised me with getting into sitting position on her own. I'm still not sure how she did it. She was laying down when I went into the kitchen, then I heard her fuss, came out and she was sitting up happy as a lark. She's only done it 2 other times but I'm sure she'll have it down soon. We've been working on it for weeks. She desperately wants to crawl to things on the floor but has not figured out how to coordinate her arms and her knees yet. Exciting news on the eating front is that we are working with a dietician now and I have her eating orally 5 times a day (3 meals, 2 snacks) and off her tube for 5 hours a day). We do a lot of counting calories...she needs around 150 per meal and 100 per snack. We see her again tomorrow and I hope we have worked hard enough to be able to double her time off the tube (the next step). This would basically have her off most of the daytime. Oh, and yesterday I got her to drink 8 oz of milk throughout the day (very thick and spoonfed sometimes)!!!! This is a major record!! If you remember, this is the part we struggle with; eating is no problem.

Isn't this pic awesome?!! You can't even see Dave behind her holding her up.

And great news, we are now part of the high speed internet world, so I'm attempting to add new pics to the site.

It's A Girl!!!...

Yes, you are reading that correctly. No, we are not playing any jokes. It really is a girl. Yes, they are absolutely sure, this is the 4th time we've been through this and we are pros at spotting the 3 lines that tell us it is a girl. Sorry, to make you all wait so long. Had to get used to the news ourselves. Sydney was/is disappointed. She really wanted a baby brother. I'm sure it will pass. Reagan said, "It's a girl!" with a big grin on her face. When the sonographer asked us if we could tell what it was (took her 5 minutes to get a good look....this baby is active), Dave and I immediately said a girl...the lines were pretty clear. Then we started laughing. Ellie was the only sibling in the room with us and she started cheering and clapping. Apparently, she wanted a little sister. Dave and I were so relieved to see a stomach, a 4-chamber heart pumping blood and every other thing that indicated that this is indeed a healthy baby. Yeah!!!!! And did I mention that this kid can move? She didn't sit still for any good pictures.

Monday my doctor's office called to let me know they were concerned about something they saw on the sonogram. Yes, my heart rate went way up...been there, done that, not anxious to do it again! They scheduled an appointment with a specialist to check my cervix (same one I saw with Ellie). Long story short: They were concerned that I might not be able to hold the baby well and go into premature labor. This would mean bedrest or possibly surgery to help keep the baby in. They needed a second opinion. Soooo...Tuesday I had another sonogram and am relieved to share that everything looks fine. My cervix looks good and I'm showing no signs of early labor. The doctor did question me on what my normal routine is and asked me to tone it down a bit (no picking up Reagan, not a lot of stairs, Dave gets to vacuum, be careful picking up Ellie) and wants to see me in 4 weeks, but he says it's all precautionary. So for those few who knew the situation, thank you for the prayers. For those who didn't, we really did not want you to worry. Oh, and I did have them double check the gender, you know, for those who really can't believe it's a girl.....and it's STILL a girl!:-)

Are We Crazy?.....

Okay, for those of you who have not seen me in a couple months or not at all, I am very much delayed in sharing our good news. We are having another baby! In fact, I'm 5 months along and the baby is due December 8th. ARE we crazy???? Absolutely! I wanted to share the news earlier, but wanted to wait until the preliminary testing was complete...then after that, it was pure procrastination:) I had a sonogram and blood test at 11 weeks, then another blood test at 15 weeks (I'm 21 weeks right now). The final results showed a low risk for Down Syndrome, Trisomy 18 (mostly fatal to babies) and neuro tube defects (such as Spina Bifida) despite my age and having Ellie. It was a relief, but Dave and I won't be truely relieved until we see a stomach and four chamber heart on the sonogram today. Yes, we are having the sonogram today and will find out the gender of the baby. But, come on, we all know it's going to be another girl...after all, Dave "only makes girls." These are his words, not mine. As long as it's healthy, I don't care what it is. So, if you've gotten over the initial shock of the above, here's what else is going on:

Sydney scored two goals during summer soccer. We were so proud of her. She played hard this summer. She has also picked up a little habit that I remember doing when I was little. She likes to use big words. It started with "actually", then it was either (but she mostly used it wrong and the word she really needed was even), then I heard annoying (when she actually meant ignoring in the sentence) and the lastest is part of a whole sentence...well, isn't that convenient. That one just made me laugh. She'll have a good vocab though since we are teaching her the definitions too.
Reagan is unofficially potty-trained. She stays dry whenever we go places and during our whole vacation to Minnesota, but tends to have accidents occassionally at home. My take on it is that it's plain laziness at home. Part of her "I'll do whatever I want" personality. She tried really hard at soccer this summer. We didn't expect a whole lot, but were happy with her stamina. She played really hard, stayed mostly focused and ran her heart out. What more can you ask of a 3 1/2 year old. She had lots of fun though and they let us have Sydney and Reagan get their soccer pic together. Can't wait to see it.
Ellie has continued on her growth spurt. I forgot to write in the last entry that she had a new tooth coming in ( 2 yr molar) and now she has 2 more (another molar and a front tooth). A total 5 so far and at least 2 more pushing through. I know it seems odd that she's getting these molars already, but that's just part of Down Syndrome. The teeth don't come in the "usual" order (of course, Sydney's didn't start out that way either). So we are excited to see the new things she will be able to eat soon. Last night, we had breakfast for dinner and she had a ball eating pancakes with syrup and sausage. She is also picking up green beans and eating them on her own. The biggest break-through came on Monday when Early Intervention brought out a new "cup" to try. Actually it is a perm bottle with rubber straw taped to it. The drink goes inside, and as you squeeze the bottle, the drink comes up the straw. Ellie did awesome!!! She started sucking on the straw!!! Not all the drink stayed in her mouth but she got better as she went along. We've been practicing for several days now and it does seem to be helping a lot.

There's more to share, but I need to get the kids around so I can enroll them in school. I'll share more later!

No Grass Growing Here....

When I talked with one of our neighbors a few weeks ago, I mentioned all our activities and he said, "You're not letting the grass grow under your feet". That pretty much sums up the past month. When Sydney got out of school in May, we hit the ground running. Reagan had 2 weeks of swim lessons (which would have been nicer for her if it hadn't been cool and stormy on many of the days), Sydney had 2 weeks of summer school (she had a ball...it was a buggy theme), I signed the girls up for dance in separate classes because of age (Reagan's was a beginner dance, Sydney's was Tap and Jazz) and just as dance finished, summer soccer began. They've already had 2 games and there are 3 left. Reagan loves it, but is upset that the other kids won't let her win. She's kicked the ball a few times, but her little feet just don't let her keep up with the others. Sydney got her first goal last Saturday. You should have seen her face, she was soooo excited. We've also had some firsts:
Reagan had her first visit to the dentist. When the hygienist started to floss her teeth, she said, "Here I show you how to do it." Of course Dave and I corrected her quickly. Sydney had her visit at the same time and you'd have thought the kid was going to an amusement park. She loves to go to the dentist. I guess this is what happens when you grow up sitting on your mom's lap while the orthodontist works on her braces....no fear of the dentist. She was devastated (and crying) one night after looking at her teeth. She was sure she had a cavity. Dave and I looked and quickly corrected her...it was the vitamin she had just eaten.

Reagan is out of her crib and sleeping in a toddler bed. I know, I know, she's 3 1/2. She was just so content in the crib and honestly, I was dreading it. She's so strong-willed and I just knew she would be in and out of the bed....and she has, but it hasn't been as bad as I feared.

Ellie sat in a restaurant high chair for the first time and did just fine. It was even one that had no tray and I wasn't able to push her up to the table either (to use her hands for support). But she did awesome.

Ellie also has figured out how to turn herself over from her tummy to her back. She had done it accidently a few times, but now intentionally does it. Every once in a while, she gets stuck, but I just lay her arm to her side and she flips right over. She has also mustered enough arm strength to push herself straight up when she is laying on her tummy (not just pushing up on the elbows). A few more things...she plays a little bit of pat-a-cake (clapping hands) on her own once I get her started and last night Dave and I clearly her say "more".....meaning we heard the "mmmo" and it ended with a definite "rrr" sound...when I was feeding her spaghetti (ground up). Oh, and she has slurped her drink a couple of times rather than mean just pouring it into her mouth. She has definitely been a busy body.

She had her other swallow study a few weeks ago, but there really wasn't anything significant to report. OT thought her eating was awesome, so we didn't even test it and instead concentrated on the drinking. Unfortunately, when we had her Radiology, she got ticked off about being strapped down and was not as good of an eater/drinker as normal. They did go all the way down to water thin but said she aspirated a little. They really had to look back at the films to see it, and she was screaming at the time. So we're thinking, she may have done fine if she wasn't upset. What we really got out of it though was that we just need to concentrate on her swallowing getting faster and being able to drink more than what she is now no matter what the thickness is.

As for Dave, as soon as he was done working at the high school for the summer, he came home and started framing our basement. He really accomplished a lot in a little over a week. Then he came down with a REALLY bad case of strep throat. Once he finally got over that this weekend, on the day he was feeling his best, he pulled a muscle in his back moving something. So, now he's recovering from that. It's always something around here. Told you we've been busy. I'll update more later.

Finally...Pictures and a Growth Spurt

So I finally went to my sister's house and put new pictures on the site. For those who don't know, we live out in the boonies and cannot get high speed internet so we are still in the dark ages of dial-up connection. I tried to pick a few of my favorites of all the girls. As for the girls:



Sydney: We are so proud of her. She has finished up her Kindergarten year and will be off to first grade next year. It has not been easy though. They have so much to learn in Kindergarten now, she was still in a half-day program and she was pretty behind when we came home from the hospital in January. She was still not sound blending words and could not get through the word lists that were sent home. 2 months later she was a different girl! She was sound blending, reading words on her list in a matter of minutes, reading books and more. It was amazing! We're sure a lot had to do with homelife being so unstable and Ellie in and out of the hospital. We are just so proud of how much she was able to accomplish this year. She played soccer this spring and asked to play again this summer and fall. It is so much fun to watch her out there.



President Reagan: She's always tempting us with being potty-trained but it hasn't happened yet. She sure is stubborn. We're hoping we can get her pinned down on it before the fall so she can go to pre-school. She's also going to play soccer this summer. She's a bit younger than the age limit, but we can tell how much she really wanted to be out there with Sydney. It should be entertaining. She's also taking swimming lessons right now so that is fun to watch too.



As for Miss Ellison: What an amazing couple of weeks she has had! Seems like there wasn't much new going on, then boom! she gets this growth spurt! She is sitting up now for up to 5 minutes or more at a time on her own. We have waited so long for this!! I know most kids are learning to walk by now, but this is Ellie's pace and we couldn't be happier. Sydney is so excited that she can sit up now and puts her in a sitting position to play with her all the time. And there's more, she is self-feeding now...cheetos, baby meat sticks, graham crackers...whatever I stick in front of her that she can hold and bring to her mouth. Apparently my spoon feeding wasn't fast enough for her. This kid loves food! Then over Memorial Day Weekend, while we were hosting my family's get-together, the kid starts waving using her wrist (not the whole arm wave) and clapping!! And still there's more...she is clearing saying "hi", has said "yeah" when we clapped this week, occassionally uses the sign for "more" or still tries to say "more" ("mmm", "muh"), and has started nodding and shaking her head!!!! The nodding and clapping are things she started before her gastric pull-up and is finally recovering, the rest is all new. Hopefully the spurt will continue. We are so excited at the new personality that is developing. Enjoy the pictures!

It's not just me...

Okay, so as I'm feeding Ellie, she usually likes to talk...which of course gets food all over us, but the other day I thought I heard something else. I didn't think too much of it until we were eating out with Dave the other day. She was eating cottage cheese and trying chocolate pudding for the first time. She kept getting mad and as soon as you put another bite in her mouth, she'd stop and be content. Yes, she likes her food! Anyhow, she started saying "muh, muh" (not "mah")when she got angry. I asked Dave if he thought it sounded like she was trying to say "more" too and he did. Then the other day, her early intervention teacher was out and heard her do the same thing and also thought maybe that's what she was trying to say. Yeah! It's not just me hoping for it, others hear it too. It's just nice to see signs of communication since she refuses to do sign language with me. She pulls her hands away whenever I try to get her to sign (Reagan did the same thing). But let me tell you...you say the word "eat" and she knows exactly what's coming next! Not bad for a kid who couldn't do that for 10 months of life and then had to take another month and a half hiatus from it in the hospital. She's also doing a little better on the cup. I know she definately likes the milk thick (like a milkshake) and she's not pushing it away as much. And have I ever told you how much she likes Peek-A-Boo? It's her favorite game. Anytime there is a blanket or anything resembling a blanket around, she's grabs it and starts playing. That's it for now. Thanks for all who responded to my whining about comments... or, in some cases, actually could hear me:)

My Hungry, Hungry Hippo

Not doing too good on my resolution. Seems like there is always something/someone keeping me from getting on the computer for a while to update. Ellie is doing great! She's gotten over her cold and the ped says her lungs are crystal clear. Yeah! We saw her surgeon a couple of weeks ago and he is happy with how she's doing. He seemed a little surprised when I told him how much she is eating. Our new regime is taking her off of her tube feedings for 1 hour before feedings and see if she eats more. So far, so good. I think for two reasons: 1. she's hungrier 2. we are doing more table foods. Her foods have gotten chunkier and boy does she like it. The kid gobbled done meatloaf, mashed potatoes and gravy and bites of baby carrots last night. Two weekends ago, she couldn't get enough of grandma's dirt cake (pudding, whipped cream and crushed oreas. Drinking is a whole other thing. She's decided lately that she doesn't like her cup as much and is pushing it away. Not a good thing. I can't wait until we get her swallow study in June. I really believe that once she can swallow thinner liquids and can get the cup thing down, we are going to be really close to eating orally at least during the day (and tube feed at night). But I don't want to get my hopes up too soon. I'll just keep pushing the cup and hoping it helps. We've moved her to the highchair for dinnertime feedings (usually I use a babyseat on the floor and feed her). She just looks so tiny in it. Oh, I almost forget, she's a whopping 17 lbs 5.5 ozs. Woohoo!! She was in the 15 lb range all of Fall and I just felt she would never gain weight. Of course, her legs just get longer and longer. She's got the same luck as Sydney there. Poor Reagan, she's going to be short like me:-)

One more thing, I never get comments anymore (can you hear the whinning in my voice?). Yes, I know I don't write as much as I used to, but let me know you're out there. It's always nice to see who checks on Ellie. Thanks!

All Mixed Up

So that little cold, well it's taking longer to get over than expected. Poor Ellie started coughing with it last Saturday and was running low fevers in the evening (100). She sounded wheezy so I called our Peds office to get her in. He was out all week. Even though I hate explaining everything again, I asked for another doctor. None available. The best they could do was a Physician's Assitant (PA). She turned out to be great. Her nurse's son is one of Sydney's soccer coaches' mom and the PA was at the last birthday party Sydney attended...small world. Luckily she read up on Ellie's history and listened to her lungs. She said she heard something with every breath too and recommended an x-ray. I forewarned her that the last time we had an x-ray (in the ER at Stormont) they told me she had Pneumonia, didn't put her on antibiotics and she stopped wheezing the next day. She understood, but said it was worth a try and that she would tell them what they were looking at ahead of time.

So my wonderful hubby picked Sydney up from school and let her hang out a the office with him while Reagan, Ellie and I made our way to x-ray. First we went to the wrong place and had to load back up in the car and go to the right place. While we are waiting in the waiting room, which was empty, an older man who has just finished up says, " Let me tell you something," to me. And proceeds to tell the story of a baby abducted in Chicago not very far a way from his mom in a grocery store and that I need to keep an eye on my baby. I tell him I was and he says I need to take her with me everywhere and leaves. What was I doing? Looking at the fish tank with Reagan while Ellie sits not even 2 feet away from me in an EMPTY waiting room. And yes, I could see her. I just had to remind myself that he thought he was doing something good. So, then we go in for x-rays. The techs were wonderful. It all goes fast. We wait in the waiting room for them to get a hold of the PA. She calls back and talks to me on the receptionist's phone. So here's my favorite part: She tells me that she should have listened to me. Then the doctor who looked at Ellie's x-ray told her it was all mixed up in there and that she'd had extensive surgery on her chest. Yes, I was laughing as was the PA who had told the doctor she already knew all of this and had already told him prior to the x-ray. Anyhow she ended up prescribing Albuteral breathing treatments to open up the lungs. So now we have yet another machine. The pharmacy told me they usually try to put the tube in the patients mouth but that anywhere around the nose/mouth area was fine. So we eventually get home after picking up Sydney (who had an AWESOME time at dad's office) and tried the treatment. Wouldn't you know it, she loved the machine and immediately moved forward to put the tube in her mouth. The PA called back later and said the doctors found another x-ray to compare Ellie's current one to (must be from the ER when they told me she had pneumonia) and told me she looked clear. I'm still not sure how well they were really able to read it (Ellie's stomach is between her lungs so it is very confusing to look at an x-ray). She told us to stay with treatments anyway. I don't know how much it is really helping. We went in on Friday since she was still coughing pretty well and saw another doctor. He checked her oxygen level (96--100 is highest) and after checking her, felt that it was just the cold hitting her pretty hard and that it was just going to take her longer to recover. We see her regular surgeon tomorrow so we'll see what he says then.

Her eating has not suffered through all of this. In fact, we are moving right along to baby meat sticks, teething biscuits and other foods she can hold that will 'melt' in her mouth. She's not too sure about holding things herself but we are working on that. Guess the meat sticks are too cold and slimy for her. Speech Therapy also told us we can start forked up table foods. Last night was my first time feeding her forked up food off of my plate...okay so it was just mashed sweet potatoes (which she loves) but it was thicker and it was a start! Our goal is to get off that stinking tube this summer!!

Things I Am Grateful For...

1. The wonderful family, friends, and people that we do and do not know that have helped us out and who have prayed for Ellie. Our family feels so grateful to have all of you in our lives. There have been so many people who have helped us out in so many ways over the last 15 months and thank you does not even begin to cover it. Recently our church (SL United Methodist) and Grove Harvest Grange put on a music benefit in Ellie's name. It was a wonderful evening and so many talented people performed. David and I were sincerely touched by the event. Thank you to all those who coordinated, advertised, performed, attended and donated. We are so thankful to be a part of such wonderful communities. I have not gotten out my Thank You cards so I do hope that no one is offended that they have not received one. Do know that we appreciate every little thing and are so excited to pass on the kindness that has been shown to us.

2. That we have had a fairly healthy winter. Outside of the 1 in however many thousand event that happened to Ellie, we have not had the flu, stomach bug or anything else nasty around here. The worst has been runny noses and the cold everyone but Sydney has right now.

3. That the girls are doing well. Despite the crazy year, Sydney is finally learning to read (and doing a great job!) and Reagan is finally closer to being potty-trained. And amazingly, neither one is resentful or jealous of Ellie. All I hear is how much they love her.

4. Ellie has FINALLY gotten back to eating like she was before her December illness. I'm so impressed because she is eating 2 1/2 ounces of baby food or 1/4 cup of whatever I make on top of staying on her continuous feed. Meaning I'm not even making her hungry and she wants to eat...especially if it's one of her favorites: sweet potatoes or squash. No, she is not particularly fond of fruit. Last week she got to try a cinnamon graham cracker stick and she went to town. Our person who helps us with the feedings kept waiting for her to gag on a chunck so she could show me what to do. And of course Ellie never did. She also got to chew on a Slim Jim (but not eat it) and whenever we tried to rearrange it in her hand, she got really mad at us! That was awesome to see. She has favorites and she's letting us know. She's also using her nosey cup (cup with a part cut out for the nose so you don't have to tip back the head). Sometimes she will drink almost an ounce! Of course it is thick liquid and we have to go a little at a time. The only bad news on the eating horizon is that Children's Mercy can't get her in for an OPM study (the one where they watch her eat on x-ray and make sure none gets into the lungs) until June 11! This means we can't officially give her thinner liquids and chunckier food and it slows our progress. I was not happy and called to get her in earlier but it wasn't possible. Argh! I had hoped to talk with our doc about it yesterday, but just as I was almost to the hospital, I got a call that the appointment had to be rescheduled because he wasn't there. Apparently there had been a mix up with scheduling. Waste of a morning but at least they are supposed to reimburse us for mileage and toll.
5. Ellie is back to her physical self and then some. She has a little bit of balance for sitting (still not doing it on her own), she is rolling over a lot and she now puts her hands out in front of her and pushes up on them a bit when she is on her tummy! I think she's getting stronger everyday. I would love for her to do more, but I made her a promise in the hospital that if she made it home, she could have all the time in the world to learn to do these things.

Of course, there is so much more that I am grateful for, but Dave tells me I already make these posts to long. My resolution is to try and post more often.

The Heart of a True Champion

That's the title of the news story they did today on Ellie. Check it out at www.wibw.com/news . She put on all her best smiles for the camera. We think they did a great job with the story. The girls were so tickled to see themselves on TV. We told them that a reporter just like April O'Neal from Teenage Mutant Ninja Turtles (one of their favorite cartoons) was coming. Boy were they excited. Sydney got really shy when it was her turn for the camera but showed off her playing with Ellie skills. Reagan was here typical self and insisted that the reporter play a game with her, opened up the closet door and tried to get her to get the game down. Once she started talking, I don't think she stopped. And an interview with siblings wouldn't be right without an argument. If you are wondering what Dave is smiling about while I am talking on screen, it would be the girls fighting over a chair. All in all it was good fun and a wonderful opportunity to share our story with others. Thanks for sharing our story with them Janet! More later.

A Long Afternoon

Sorry I didn't update on Thursday, it was just a long afternoon. There were long waits in the waiting rooms. Ellie really did well when Dr. Ostlie pulled out her j-tube. And, yes, he literally pulled it out. Dave said he did it quickly. I had my eyes closed while I held her hands and waited for a cork popping sound and screams of bloody murder. Didn't happen. She cried but not as loud as I anticipated and there was no cork popping sound. He put in her button and it looks sooo much better than the contraption we had on there. He also said that we could go off the Prilosec (antacid) now. He said she can reflux, but that she no longer has the area that secretes acid, so any reflux would not hurt her. So now we are totally off medicine!!! Dr. Ostlie also snipped some stitches that were poking through on her scar. Even though they are disolvable, some do manage to work there way out. Finally, he told us that we can take her off her feedings for an hour before oral feeds to try to get her hungry. He also said we could increase her continuous feeds a few mls after oral feeds to make up for any lost calories. We want her to continue gaining weight. As for her weight....you know, all these scales are different. They had her at 16lbs 1 oz....of course, two weeks ago she was 16lbs 6oz on our Peds scale. I can't imagine that she's losing weight. I'll try to get her weighed this week on the Peds scale again.



So after all that, we had to go to Radiology which was another hour long wait. We didn't get called back until 4 pm. Our appointment was at 3 pm and she hadn't eaten since 11 am. Surprisingly, she was doing fairly well. So the technitian takes us to the room and gets Ellie all set up. Setting up means she is laying on a board with a strap across her legs, a strap across her chest under her arms and with her arms pulled up over her head and strapped. She was not happy. Then she said the radiologist would be in soon and left. We waited about 7 minutes while she cried and we tried to soothe her. I finally got the tech and asked if we could release her arms since she was so unhappy and she did and left the room. I hear them calling for the the radiologist to come to our room over the speaker. The tech comes in and says she'll be in soon. About 10 minutes later and my singing Ave Maria about 10 times (this is what calms her down), I go track the tech down again. I explain how uncomfortable this is for our baby and she says the radiologist is reading our file and will be in soon. So she does arrive soon and they put the contrast in her button site. On the screen you can see the contrast inside her body and how it is moving its way through the intestine. The radiologist then looks at Dave and I and says, "where exactly did he tell you this was placed?" So much for reading Ellie's file. We explain about the pull-up and then she understands and tells us there are no leaks. Hooray! And believe me, Ellie was so happy to get out of that contraption and start eating.

Her site is still a bit sore but she's doing better each day. There's a little oozing coming from the spot but Dr. Ostlie says it's fine. Last night she threw up in the middle of the night, but it was just saliva...this happens sometimes. Of course it was enough to make me paronoid and I kept checking her color, her head to see if it was warm, her tummy for swelling and her j-site. Of course she's fine. Well, she's crying, gotta go.

Today's The Day

We are heading to Children's Mercy soon. Ellie has an appointment to have her j-tube replaced with a button. Yes, a defective button is what caused all the problems in December (we're pretty sure anyhow), but now that the surgery site has healed and the intestine has adherred to the abdominal wall, everything should go smoothly. Dr. Oslie says there is a tiny possibility of making a hole in the intestine when placing the button but it is uncommon (of course, uncommon seems to be Ellie's middle name!). Just in case (because we are all taking precautions after the last episode) she will go to Radiology afterwards to make sure there are no leaks. I'm not really looking forward to them taking out her tube. I was told it will sound like a cork popping. That just doesn't sound pleasent. She will get some Tylonel before, but I had to stop her feedings at 11 am because of the Radiology appointment...so she's going to be really hungry on top of being mad and hurting. Hopefully it will all go fast. I'll update you all when we get back!

Happy Late V-Day

Hi all,
How funny is it that we had a cardiologist appointment on Valentine's Day? We thought it was fun! Reagan got to come with Ellie and I this time. It sure is fun to see how different the doctors act when she's with us. She even managed to get through the echocardiogram and appointment with great behavior and no tantrums (2 hours!)!! Of course, she was covered in stickers...my periodic reward to ensure good behavior. Whatever works, right? Anyway, Ellie was pretty ticked off about the echo and this was the worst she ever handled it. We got through it though. The leaking around her patches has healed. She does still have leaking in both valves (the one that they made two valves out of) but it is minor. The one that has more leaking is on the low pressure side so this is a good thing. It is something that will need to be watched and checked again in 6 months. He did decide to take her off her lasix!! One less medicine, hooray! When her cardiologist heard about her ordeal in December he said he was not surprised that her heart was fine through it all. He just said, "that means they did a good job repairing it!" And boy are we glad!
Earlier this week we had a pediatrician appointment. Ellie weighed a whopping 16 lbs 6 ozs!! Can you believe we have been in the 15 lb range since August? It is so nice that she is gaining. We are still doing oral feeds, but she is pretty much staying on continuous j-tube feeds. Nutrition and Dave and I really wanted to see her get some weight on. As for oral feeds, she doesn't have an aversion to eating, but she is just not as motivated to eat as she was before the whole incident. We are having some luck with thickened yogurt. She seems to like it anyway.
Her staph infection is looking much better, but wouldn't it figure that I just got a call that the swab they took for VRE earlier this week came back positive (we had 2 negatives in a row). It will be up to Dr. Ostlie to decide what he what's to do. I'm guessing we'll probably be leaving it alone. Why it came back positive after 2 negatives is beyond me. Our pediatrician wasn't sure either.
Tonight I was rocking in the chair with all 3 girls (Ellie in the middle)....don't ask me how we all fit. Ellie seemed to be really fascinated with Sydney and Reagan. Sometimes she would look up at Sydney and grab her hand or hold her leg and sometimes she would grab Reagan's hand or the pen that she was holding. I got to tell you, it is so funny to hear Reagan tattling on Ellie. "Mommy, Ellie's taking my pen!" Those girls really motivate Ellie. Two weeks ago she signed "more" because the girls were playing and kept running in and out of the room screaming. I thought it was coincidence the first time, but then I had the girls come in and leave the room 2 more times and each time she signed. She signed it again last weekend when I was playing with her. It is just not on a consistent basis yet. Oh, and she started rolling over again this week! So, slowly we are making progress.

So I'm not sure what's going on with the Caringbridge site, but I just can't seem to update there. Look for updates on this blog from now on, but feel free to leave messages at either place.



After I updated last week, I got a phone call from Ostlie's office saying that Ellie's swab for VRE came up positive again. Then she was swabbed again on Tuesday and that one came back negative. So, we will keep on hoping for 2 more negative swabs.



Monday of this week I took Ellie in to the Ear, Nose and Throat doctor. He looked at her ears through a microscope and said she didn't have any wax buildup (yeah--no need for scrapping it out). He also said that it did not look like their was any infection. As for the failed hearing tests, he has decided to wait and do another in 3 months. He said that Ellie's ear canals are so tiny that they are the same sized as the tubes he would put in and that tubes would be impossible to maintain right now. Since she does not have any noticable hearing problems and has just gone through so many surgeries, we are going to wait for her canals to get bigger and recheck them. Good news for us since we really didn't want her to go through anymore at this point.



Tuesday we had our weekly pediatric appointment for lab swabs and I really wanted Dr. Cotter to take a look at Ellie's j-tube site. It had started to look red and yucky and she was pretty angry when I cleaned it. We also had that big snow coming in and I didn't want her to wind up with a big infection and not be able to get anywhere. Wouldn't it figure that we got a bunch of sleet out here that morning. Thankfully Dave came home to take us to the doctor. We barely made it up the hill to 62nd street. We got to the pediatrician's office fine and he took a swab of it to get cultured. We got the results yesterday...another staph infection. At least it's not MRSA this time. So we will be off to the pharmacy to pick up an antibiotic today.

Outside of that, all is well. The girls and Dave really enjoyed playing in the 9/10 inches of snow we got out here on Wednesday. We are also so thankful to have a wonderful neighbor who came out on his four wheeler and plowed our drive. Of course, even with a plowed drive, neither one of us can get the cars up the drive...so I am getting lots of exercise hauling the girls up and down the drive. Hopefully it will melt soon!

Home Sweet Home

Hi everyone,
Sorry to keep you all waiting to find out how Ellie is doing. It has just been so nice being home. 2 weeks today! The girls were excited to be together as a family again. When we brought Ellie home, she was not like herself. She was pretty fussy and wanting to be held all the time. She screamed through her sponge baths, diaper changes and when we put cream on her skin. I think her sensitivity to touch increased while she was in the hospital. Reason #1 for her fussiness. I can’t blame her when she was poked and prodded all the time. Nighttime was torture too since she didn’t want to go to sleep in her bed. I spent several nights sleeping in the recliner with her.

The Friday after we came home we went to her optometrist. He said what I already figured…glasses if she can be fit for them. She has a hard time seeing close up and her left eye tends to wonder when she concentrating hard. He sent us to a frame-maker in town who was luckily able to fit her for glasses. Not an easy feat since she is so small and does not have much of a bridge to her nose. Last week we picked up her glasses and she looks adorable! (Of course, I’m her mom so I’m going to say that!) You can imagine the stares we get when we take her out in them, but boy do them seem to be helping her. She really is fascinated with her toys now.

After that appointment, we went to Ear, Nose and Throat (ENT) to get a hearing test. She didn’t pass again. They are saying it looks like fluid behind the ears. I know, she hears perfectly well…of course we don’t know how clear it is for her. She also has had no ear infections, but they say not everyone gets one and they want to make sure she doesn’t end up with one. So we will have an appointment next week with the ENT doctor.

That weekend she developed a really bad rash in her diaper area that was even bleeding at times (lots of bowel movements, but not dehydrated). Thanks to the advice from an NICU nurse friend of ours (thanks Annie!!) we were able to clear up her rash. So, reason #2 for her fussiness.

So then Tuesday of last week we went to KC for our checkup with Dr. Ostlie and he said everything looked great. He took a sample of her bowel movement to make sure she didn’t have a bacterial infections and took swabs of her j-tube and nose to help clear her of VRE and MRSA precautions (it takes 3 swabs 3 weeks in a row).

On Wednesday, we saw our pediatrician. I think it took about 40 minutes just to get caught up on everything…unfortunately, Mercy did not send him discharge papers yet so he was not updated on our last couple weeks in the hospital. While he was doing her physical, he asked if she had any teeth and I told him no. Then I was holding her upper body while he checked her abdomen and low and behold, she had one tooth that had broken through and one almost in (came in on Thursday). So, reason #3 for her fussiness. Our girl has been busy.

As for Physical Therapy (PT), they have been impressed. She has made great progress in the 2 weeks she has been home. She is sitting up well in her special chair and is even using a bit less help when we hold her. She’s using her arms well, is finally grabbing her feet again and can even tolerate some tummy time. She is also babbling a lot and saying mama and dada.

Sorry for such a long update. I will try to do them more often now. I also am going to try to get some pics onto her blog.

Natalie

Home Tomorrow!!

Hi all,
Ellie did well throughout the weekend and all signs point toward going home tomorrow. She maintained 30 ml feeds all weekend and then we made them 24 calorie today and she's had no problems! They have even taken all her monitor leads off tonight and the only tube on her is her j-tube. We have continued working on oral feeds too, but she is not too interested in them. She eats some and then decides to blow bubbles. I think some is getting down but most is not. Hopefully this will improve when we get home. Starting around Thursday or Friday she started smiling and babbling again and yesterday she started laughing. It is so good to see her happy...Dave and the girls were sure glad to see her happy this weekend.

We will have lots of work to do when we go home. She had made some really good progress after her gastric pull-up surgery in September. She was eating 1/4 of a cup of food 3 x a day, rolling over, pulling her feet up toward her hands and mouth, playing well on her tummy and starting to babble---she was saying dadada, yayaya, wawawa, nanana and had just said mamama before the j-tube surgery. The babbling is starting to come back--nanana and mamama and she's using her hands well again. She is even shaking her head no at me when she done eating and was banging mallets togther during her music therapy session today (these are new things). She also loves making fish faces and kissy noises at all the nurses.

Physical Therapy (PT) came by today and worked with her. She does not like being touched a whole lot as it is now but she was really ticked off by the end of the session. She doesn't like laying on her tummy and won't push up with her arms, doesn't want to move/roll toward a toy (though she does manage to move back onto her back) and keeps her legs in a frog like position when she's laying on her back (this is bad on her hips). PT wants us to continue to get some help at home. These are just setbacks we will have to work through. Of course, when you consider she's had 7 surgeries in the last year, all in the chest/abdominal area and a life threatening infection...she's doing pretty well. Our wound care nurse says they call her their little miracle. I still have a hard time thinking about that night when we brought her home and morning when we brought her into the ER. When I do, I have to get up and look at her and see that she really is okay now.

So...Ellie and I are really looking forward to getting home with Dave and the girls. We've missed them bunches. I can't promise pics anytime soon (dial-up internet at home) but we'll see what we can do. I'll try to update whenever we get home. Thank you all for sticking with us. I believe your support, thoughts and prayers have all been instrumental in helping us get through this difficult time.

Still Here

Ellie went to Radiology yesterday morning to have the fluid/abssesses around her liver aspirated (taken out). They only had to give her gas and put her to sleep. No breathing tube was needed. When they tried to aspirate the fluid they could not get very much. It was very thick and red. Turns out that it's a hematoma (blood clot). She will not need anything to get rid of it, it will be reabsorbed by her body. They did get enough to culture it and so far the culture is negative.
The stool sample they took came up with a negative culture too (yeah) but the culture on her incision site came up positive (she had a little leaking there the other day) for VRE--Vancomycin Resistant Enterococcus. Apparently it is not in her incision site, but on the skin around it. Basically it is a bacteria that is resistant to the antibiotic Vancomycin--which is a strong antibiotic used to treat MRSA staff and other infections. She does not have an active infection, but is carrying the bacteria so we are on isolation precautions (yellow gowns and gloves) for that. She contracted it because she was on several antibiotics, had different IVs in, had a low immune system, etc....her body was open to every chance of getting it. Infectious Disease says her body will eventually start making good bacteria again and it will get rid of the VRE. The funny thing is that we were just starting the labwork to get Ellie out of isolation precautions for MRSA (which she had way back in September)! At least she likes yellow---apparently Sydney and Reagan do not. They both refused the yellow toothbrushes Dave offered them the other day (they wanted the pink and purple ones). So now he says we have 2 new yellow toothbrushes that neither one will use. Guess they are Ellie's when she gets teeth!

They started Ellie's j-tube feeds back up yesterday and she is now at 20 ml of 20 calorie formula. We just got permission to slowly go to 25 ml. Our goal is 30 ml of 24 calorie formula without complications. Dr. Ostlie says she is looking great and, if all goes well, may get to go home on Monday or Tuesday!!

Latest News

Well I can't seem to get an update on Caringbridge from this computer so hope everyone finds it here. I did get to see Dr. Ostlie on Monday and had a chance to ask our 2 pages worth of questions about what is going on with her. It was so nice to hear that he had checked in on her often during vacation and knew where we were with everything. He even admitted that there was a time that he worried about whether or not she was going to make it.---Seems like everyone keeps saying that.

After Sunday's episodes they decided to do a scan of her tummy on Monday. She did not have to be put totally under for it but instead was given meds to make her sleepy. It worked, but upon seeing her in recovery I didn't find a sleepy girl but a very playful one. She was babbling and playing! This was the first time I had seen this in almost 4 weeks. It was awesome and I took pictures. I'll have to wait until Dave gets down this weekend to post them.

Unfortunately, the test showed fluid in 3 areas around her liver. They do not know if they are absesses (infected pockets of fluid) or just fluid. My understanding is that it is fluid that was leftover from her whole swelling incident...not new fluid. The fluid/absesses are not hurting the liver. Guess I'm not surprised by all this. I just new something wasn't quite right and better to find it before we go home.

I woke up this morning to the most beautiful noise. At first I thought Ellie was upset then I realized she was playing and babbling. I went over to the crib to say good morning and got the best smile! What a nice change. The plan for today was to have the fluid taken out (they will do this by needle, they put a tube in to drain excess fluid). I was even hurried out of the shower and rushed down to Radiology with Ellie in her pillow covered wagon. When we arrived they told us there was a mistake and it has to wait until tomorrow when we have an anethesiologist present. Oh well. In the meantime, they decided to start her feeds back up this evening at a very slow pace of 10 ml per hour and increasing 2ml more every 4 hours. Of course she won't get very far since they have to stop feeds at midnight due to her procedure in the morning.
Oh, and the best news is that Dr. Ostlie gave permission to try oral feeds again 3 x a day. Only about 10cc which is small but enough to practice with. When I gave her the cereal, she tasted it with her tongue twice then opened her mouth wide for a big bite. She went back to eating like she hadn't missed out on anything!!! This is so awesome. One less thing to reteach. Well, I'm off to bed to get ready for a busy day. Talk to you all soon.

Look At Her Now!

Here are lots of new pictures of Miss Ellie without tubes on her face. We also added in a picture of her belly. She has many other bruises and her skin is pretty beat up but her belly is the worst of it. We tried to keep it hidden from the girls but it was uncovered yesterday when we came in. Reagan looked at Ellie and just said, "She's beautiful mommy!".
There's also pictures of the girls visiting us at the hospital. We were so happy to have them! Dave is getting ready to pick up the girls from my sister's house and take them home. How nice that will be for them. We realized today that because of the ice storm (we had no power for 4 days), Ellie's j-tube surgery and then the rest of her hospital time that they have not been home since Dec. 10!

On a last note, Dave was talking to one of the nurses and she said that she had never had Ellie, but that she had checked in on her and that she couldn't believe how far she'd come. Seems like we get a lot of charge nurses and others we have never met who know her. I think having that silo on her tummy for so long really stood out. Speaking of her silo (bag on her belly that was then wrapped in gauze), we just have to share some the names that were given to it by nurses and doctors: belly turban and tower of gauze.

**New news: we just heard they are doing orders to send Ellie to a regular floor. Yeah!