Happy Halloween!

I'm only blogging to show off these adorable pictures! The very first sound we heard Ellie make was a squeak rather than a cry. Chad has called her his "Squeaker Bee" since then.... Hence, the costume.




Ellie with Harrison (Skull Warrior), Alex (Ninja), Ethan (Scarecrow), and Evan (Piggy).


Go! Go! Go!



Once in a while they do neat things when they update the blogger that we use and one of those is making it so we can put video up directly on the page (I hope this works!) Here is Ellie trick or treating at the next door neighbors' house.

Long Sabbatical

Ohh I can make a scary face for Halloween!



Hello all you faithful people who keep checking and wondering if I'm ever going to blog again. The camera has been MIA since we moved, and we only found it a couple of weeks ago. I know that what you mostly want to see are pictures, so I've got some for you now!

We went to see Dr. Cowley at Primary Children's today for Ellie's cardiology checkup. She didn't have to have an echo today, just a chest x-ray and an ekg. She is still doing FANTASTIC! Dr. Cowley can't believe that she's the same baby that was so very sick not so very long ago. She's lost some weight, down to 19 pounds. (She was at 20 pounds even at her 18 month check up...and 33 inches long!!!! She grew 3 inches in 3 months! ) Dr. Cowley wants her on the RSV shots again this winter because she is still so tiny and he wants her to get another year of growing under her belt. Luckily, RSV usually doesn't hit kids after 2 years old. Another nice thing is that in our new church there are only 3 kids in nursery right now. After the first of the year, there will only be Ellie, so she might be able to go to church this winter. If not, I guess I'll just hole up at home with her until next spring again.

Ellie is busy running around. She loves to go outside and play, and I let her as much as I can because the fresh air really is good for her. I know that's how she's burning all those calories off and losing weight, so I guess I'll just have to add more butter to her vegetables. She loves to eat now, and she is learning more sign language to help her tell me what she wants. It's so nice not to have nearly the screaming fits that most kids have at this age because she can tell me what she wants. We have also been working on her speech, and she can say quite a few words now.


We went to visit everyone in the NICU after the cardiology appointment. Amber was one of Ellie's nurses that took care of her a lot of the time, but we haven't seen her since Ellie's Picnic Day





Naked baby running around the examination room. (I'm not naked, I have a diaper on!)


That's my belly button! Isn't that cool?


We stopped to see Auntie Phyllis. She can't believe how good I look!






I got to play with Phyllis' baby doll and with Rosie, her dog!

You've Come A Long Way, Baby!

What are you looking at? Don't you know it's impossible to eat pasgetti neatly?




This is for all of you loyal readers out there who keep checking up on Ellie, only to find I haven't blogged since March.

Miss Ellie is now 17 pounds, 4 ounces. AND 30 inches long. She is just below the 3rd percentile for her weight, and in the 75th percentile for her height. (Compared to other kids her age.) I do get to report that she eats much better than she did even a month ago. Today she ate an entire peanut butter and jam sandwich, 1/2 cup of cubed cheese, and about 15 sliced grapes...all in one sitting. This is the same girl that a year ago we had to fight to get her to eat 40 cc's of milk from a bottle! Now she thinks she needs to eat all the time! It's great! Now if she can reach 20 pounds before she starts kindergarten.... It's hilarious to feed her because she opens her mouth huge like a baby bird. She's not walking yet, but I think it's only because she has those two spindly legs and no weight for ballast. She can stand up on her own, and will now take a few steps. I don't understand why she's brave enough to climb up onto a kitchen chair to reach for something on the table, fall off and give herself a fat lip; but she's too scared to try and walk very far on her own.

We went to see Dr. Cowley in April. Ellie had to have a sedated echo cardiogram again. I hate it, because she hates it so bad, but the only way they can get good pictures of her heart is if she holds still. And what kid will hold still for that? When it was all done, we went back into the examination room to wait for Dr. Cowley. I was nervous because I could see that the wall of Ellie's left ventricle was looking thicker than the rest of her heart. Dr. C came in a few minutes later practically beaming. "She's doing fantastic! After everything she's been through, we couldn't ask for her to be doing any better than she is!" All I could say was, "Really?" No medication, and we don't have to go back to Primary's for another check-up until October. Woo Hooo!!

This winter was tough because I had to take Ellie into the pediatrician's office every 28 days for a synagis shot. This shot helps prevent RSV in high risk babies. So, once a month, we were in the office getting poked. It got to where when I put Ellie on the examination table and she heard the paper crinkle underneath her, she knew what was coming and started to scream. Not easy being the mama and having to watch that. You'd think after watching all the other stuff she's gone through, it wouldn't be a big deal...but it's still hard to watch her have to do all this extra stuff to stay healthy. Thankfully, she only had to have those shots from November through March. Unfortunately, she's now on her round of immunizations, so she still has to get stuck with a needle, but at least it's not once a month.

Ellie has had a new trial this week...discovering that she is not the center of the universe. Both of her older brothers got their tonsils out on Monday and Mommy has had to take special care of them. I certainly haven't been ignoring her, but I haven't been meeting the Her Majesty's demands as promptly as she's used to. Sick brothers are a new experience for her. It's actually been good for the boys to see that they come first when they're sick, just like Ellie came first for so long (and sometimes still does).

The other night the boys didn't feel like eating anything, so I fixed dinner for Chad, Ellie, and I. I fed Ellie first of course, and then I gave her a Cheeto to keep her occupied while I ate my dinner. I was eating and not looking at her and she started to squeal. I couldn't figure out what she could possibly want, so I looked at her and asked, "What?" She was sitting in her high chair, with her hands folded, waiting for the blessing on the food. I laughed out loud and told her she had already eaten her dinner, so I didn't know why it made a difference now. Apparently she thought it was important. So I said a prayer and then she was fine.

I have started to teach Ellie a little bit of sign language. This has really helped her be able to tell me what she wants/needs even though she doesn't have the words yet. She is also saying a few words and trying out new ones. The funniest thing to watch is when she tries to say "Alex." She opens her mouth wide and says, "Ahhhhhhhh." Sometimes she'll put an "icks" on the end. She kind of mumbles "isson" for "Harrison." And of course, she says "Mama", "Da Da Dee", "Buh Buh Bye", "Go go go", "good girl", etc.

She is the HAPPIEST baby alive. Everywhere I take her people ask me, "Is she this happy all the time?" They can't believe it when I tell them yes. She smiles and waves at everyone. I can take her to run errands and she doesn't make a peep when I have to make 5 stops around town. She puts up with a lot and just rolls with it. I think that she was sick for so long that she has decided to enjoy every minute she has.

What? Mom changed my clothes 5 minutes ago. It's time for a new outfit...again.



I don't know where these guys get the idea I should be walking anywhere when crawling works perfectly well for me! (By the way, do you like my Cindy Lou Who hairdo?)




You don't really expect me to get wet, do you?

Who's bright idea was this anyway?


Hey, hey, HEY! What are you doing back there?


And now for my next trick...

I get a lollipop to help me hold still for my first haircut!


I'm not tired, Mom, I promizzzzzzz.


These are the same bunny slippers I wore last Easter!


Silly brother! He thinks I fit in the bucket! Oh, wait....


Caprice and I having a jam session.


Ooh lookie! I found Grandma Kara's pretty hair things!

They Say it's your Birthday

Hey birthday girl!



YAHOO! Ellie is one year old today! Last year we didn't know if we were going to get to celebrate this day! Want to compare then and now? Ellie is healthy, getting stronger all the time, and crawling. She can say "bye bye" and wave both of her hands. She also says, "Ma Ma," "Da Da," and "uh oh." She is happy and smiling all the time and we all adore her. She has brought so much light into our family.

She is only 16 pounds, but she is eating much better, proven by the fact that she has grown another 3/4 of an inch this past month. She is now 29 1/2 inches long. Finding clothes that fit is going to be an adventure. Unfortunately, we can't put Ellie in a front facing car seat yet because she has to be a year old AND weigh at least 20 pounds. That's gonna take a while. My brother calls her "Ellie Bobble Head."



Ew what is that? It tastes weird! Here, I'll just stick my foot in it...


My cousin Caprice and I are just chillin' with my new toys.


Come on, Mom, is all of this really necessary?


You expect me to wear that?

New Year, New You

Yes, this is what her hair does naturally! Just like her mama!



Happy New Year!

So much has happened since last October, and we haven't been very good at keeping up. Not to mention they keep tweaking this blogger we use and it's a pain. This is why I (Teri) am writing under Chad's user. He can't add me to the blogger yet.

Ok, back to important things like our baby girl!! We took Ellie to Dysphagia Clinic on December 13th to see Dr. Molly O'Gorman about her feedings. Dr. Molly hasn't seen Ellie since August, when she still had the NJ tube in and was still tiny and a little bit yellow. When she walked in she couldn't believe her eyes. She just stared and asked, "Is this my Elizabeth? Is this my little yellow girl that won't eat?" Ellie was up to 14 pounds 11 ounces. Still quite small, but gaining. She is eating so much better now and not throwing it back up that Dr. Molly told me I could fire another doctor. (Translation: We don't have to go see her anymore!) I love Dr. Molly, but I won't feel bad about cutting out another regular doctor's visit.

After Dr. Molly the nutritionist came in to tell me what I need to work on to get Ellie to gain weight faster. She was not too happy that Ellie had been discharged from dysphagia because she still wanted to work with her. But, here's what she told me to do.... Add 1-2 teaspoons of BUTTER, MARGARINE, OR VEGTABLE OIL to each jar of baby food I feed Ellie. (Sidenote: Ellie eats her vegtables much better now I put real butter in them!) The nutritionist said that it may sound weird to give a heart baby fats like that, but congenital heart disease is completely different from adult heart disease. Babies need those fats for brain development. I said, "Okay." Then she asked me what finger foods I was giving to my girl. I told her I was giving Cheerios. Believe it or not, she gave me a dirty look. "No," she told me. "You give that girl cheetos, not cheerios. She needs more calories, same volume!" Then she told me I may have to keep Ellie on this diet for a couple of years. "How am I supposed to break her from junk food???" I query as politely as I can. She tells me that, "You're the one that goes to the store and buys the food. If it's not in your house, she won't eat it." Yeah, okay. Obviously this woman has never had children or she would know better than to think that Ellie's going to magically eat more healthy when I take the junk and extra butter away. Mm hm.

The next week, on Dec 20, we went to see Dr. Cowley, the cardiologist. Ellie had to have a sedated echocardiogram this time. This means they had to put her to sleep so they could get thorough pictures. It took over an hour (they usually take about 45 minutes). I was really concerned going in to do this, because every time they put Ellie under for a sedated echo when she was in the NICU, she would sleep the rest of the day. Dr. Cowley had to see Ellie after this echo and she had to be awake for it and I was afraid she would sleep through it all. Come to find out, the reason Ellie would sleep so long after the sedation in the hospital was because her liver wasn't working well so it couldn't process the medication very fast so it was in her system longer.

Well, the echo showed that her systolic function is FANTASTIC! Her Ejection fraction is 72% and her Shortening fraction is 42%! Dr. Cowley said we don't even have to worry about systolic function anymore! Woo hoo! Her aortic stenosis is now trace-to mild rather than critical. Bigger woo hoo! Her gradient (blood flow across the valve) is 52%. Dr. Cowley wants to wait until it shows around 70% on the echo before he balloons the valve again because then it will show 50% in the cath lab, which is the cut off for balloning the valve again. The cath lab is more accurate than the echo as we have found out before. (See April 27ths entry). He said that she is doing so well that he doesn't want to rock the boat....so he'll see us in 3-4 months. BIGGEST WOO HOOO!!! Plus, she gets to come off the Digoxin, which means my baby is 100% off medication. Merry Christmas to the Thompsons!!!!!!!!

Ellie had her 3rd RSV shot on Friday. They're about $1600 each and she has to get one every month. Thank goodness for insurance. She is now 15 lbs 3 oz. She gained nearly a pound since her last checkup with Dr. Coopersmith! ( She was 14 lbs 6 oz.) Dr. Coopersmith is VERY happy with how well Ellie is doing. The butter and cheeto diet must be working!

Okay, now the part everyone really wants to see.

Tall and skinny girl with froglegs!




I'm a darling little duckie for Halloween!




My brothers and I are so cute, but I didn't get to go Trick or Treating with them.


Hugs with Grandma Kara on Thanksgiving.


Grandpa Wayne and I play with a teddy bear that has more hair than either one of us.


Aunt 'Laira wants one! Just don't tell Uncle Jake...


Dressed for church on Christmas Eve. (Yes I go to Sacrament meeting and we sit in the back.)



I'm going out to watch the New Year's fireworks with my Daddy!

Anyone for an update?

Snoozing in the swing with my bunny.


Everyone wondering what's going on? I'll try and recap all the stuff that has happened in the last 5 weeks without boring you to death.

Ellie went for her cardiology appointment on Sept 8th. Her heart is back up to normal function again...hooray! Her shortening fraction is up from 15% to 39% and her ejection fraction is up from 49% to 65%. Dr. Cowley was very happy with that, so he's keeping her on the digoxin until the next time we see him...which isn't until December! Hooray for baby girls! The funny part is he doesn't know if it's the med that did the trick, or if it was luck or what. I say it was prayer.

Okay, now the not so great news. When I took Ellie in for her 6 month checkup her pediatrician (Dr. Coopersmith) she had only gained 4 ounces in one month. Very VERY bad for her because heart babies have a delicate balance of getting just the right amount of fluids and weight gain. Too much or too little taxes their hearts too much. So Dr. Coopersmith came in and gave Ellie "the look." I started laughing and told Ellie she was in BIG trouble. She just grinned. Dr. Coopersmith said, "It never works on kids this age." She decided to give Ellie a 2 week shot to get some good weight gain before deciding to put the tube back in. Unfortunately, we ran into a little snag a week ago last Friday when Ellie decided to eat only 1-2 ounces of milk at a time instead of 4-5. So in went the tube and she's had it in off and on for the past week. The good news with that is when I took her in on Wednesday, she had gained 13 ounces in 2 weeks. That's what we need! Now if she'll only do it without the tube.... She's eating a little bit of solids, but not much. We shall persevere!

Since school has started the boys have been in school and have brought home...colds. Try as I might I can't keep them away from Ellie, so she has caught a cold too. Dr. Coopersmith checked her out on Wednesday and said it didn't look like RSV, just a normal cold, but to call her if she gets a fever or a really runny nose. Well you know how it goes, these things always happen on Saturday nights when the doctor's office is closed. Ellie had a temp of 100.7 so I took her to the 24 hour child healthcare office in Layton. The doctor there listened to her lungs and they were clear. That means it's still just a cold, but we still have to watch her close to make sure it doesn't turn into RSV or croup.


Ellie did get her flu shot this week. And hopefully will get the RSV shot SOON. The RSV shots are once a month and we're lucky the insurance covers it...it's only around $3000 per shot and she's got to have them from November until whenever the powers that be decide.

Hey lookie at me! I have a goatee just like my Daddy!



First I eat some cereal, then I eat my toes!



Hanging at Grandma Kara's with Uncle Jakie.




Getting kisses from Uncle Jeffro.

Elizabeth Dawn's Blessing Day

Earth Angel


We've been waiting for this day for a long time. For those of you who aren't LDS or that don't know much about us, a blessing is similar to a christening. The baby is given a name, just as in a christening. In addition to that there is a blessing given to the baby. We don't baptize the baby, because our children get baptized when they're 8 years old.

Blessings are usually given when the baby is one or two months old. We could have done it in the hospital, but we decided to wait until she was ready to be blessed in church so that we could share the experience with more people. Ellie will be 6 months old on Thursday, but this day was worth waiting for. She looked beautiful in her dress. I'm hoping to get her pictures taken professionally in the next couple of weeks in her dress before the cold season hits.

At the end of August, Aunt Lois came out from Connecticut to visit the Thompson family. It was the first time she got to see Ellie and we got some pictures with them together. Her group of friends out there have been part of the many people praying for our little girl so faithfully.



Ellie and Aunt Lois at the Thompson Family Picnic

This is the picture I took at the last cardiology appointment. These are the wires to run the EKG test.

I think they use less electrical equipment to fly the space shuttle!


Hanging with Grandma Anne after the blessing.




A rare picture of Uncle Jeffro. An even rarer picture of Uncle Jeffro with a smile!


Miss Ellie is eating much better. She still needs a little help, but she is improving each day, which is what counts the most. We're working on getting that tube out for good!

Look for videos soon!

Inflicted sabbatical

I haven't posted in over a month, not because I haven't wanted to, but because the blogger site we use is upgrading and changing things and blocked us out of the normal way to logon. So I sincerely apologize to all those who think we have stopped blogging. It took a while to figure out how to get around the new system.

Anyway, LOTS to update everyone on about Ellie. (Pictures will be added later. We can't upload them yet.)

First of all, Ellie is off the NJ tube! Hooray for us! She has been on an NG tube for a month now. We can't get her completely tube-free until she eats enough to consistently gain weight. When she came off the NJ tube, she started taking 48 cc's by bottle each feeding. She got up to where she would eat between 40-90 cc's at a time...and once 110 cc's! When we went to the Dysphagia (eating) clinic on the 16th, Dr. Molly couldn't believe it when she saw my records of Ellie's feedings. She said, "This isn't right." It startled me because I have been VERY meticulous about keeping track of every bit of food that little girl gets. Dr. Molly then said again, "This isn't right. She doesn't eat like this!" I just smiled and said, "She is now!" So....Dr. Molly took Ellie off the feeding pump completely and now I only have to supplement whatever Ellie won't bottle feed through the tube by gavage feedings (through a syringe into the NG tube).

Ok, next is Ellie's last cardiology appointment that was on August 4th. She had an echocardiogram, an EKG, and other stuff no child should have to sit in a hospital for four hours going through. Dr. Cowley said that her heart function is a little worse than it was when she was discharged from the NICU. Her shortening fraction is down to 17% from 24 % and her ejection fraction is down to 55% from 65%. Dr. Cowley said he's never seen a heart fluctuate like that. He said that hearts will do whatever improvement they get to, and then plateau. So, he put her back on the digoxin to try to get her heart pumping stronger again and we are going in on the 8th of Sept. to go over options again. Ellie is scheduled for another heart cath with the balloon on Sept 21, but Dr. Cowley is going to check her out very closely on the 8th to see if that is really what needs to happen, or if they should do the valve replacement sooner than planned. That would mean open heart surgery. Chad and I are trying to remain calm because of how many times the doctors have jumped the gun on her and given worst-case scenario and then come to find out she's doing much better than they thought.

Clinically, Ellie looks fantastic. She is pink to the tips of her fingers and toes, smiles, laughs, wiggles, rolls over, "talks" and does everything a baby her age is supposed to do. Early Intervention came and checked her over and informed us that she is right on track for her age group as far as her development goes. They said that it is amazing that she is so alert and active because she was a preemie and she spent so much time in the hospital. Most babies like her are much further behind developmentally. She just has to work on her eating!

I have been taking Ellie out in the evenings for walks in the stroller after it cools down a little bit. I have a mosquito net that goes over her seat to keep out the bugs and the kids and the over-eager adults. She is finishing up her 3 month isolation period, so we are going to bless her in church on Sunday. Of course, we will leave right after the meeting is over, but she will get to go. It doesn't matter that she's almost 6 months old, right?

I keep forgetting that she is 5 1/2 months old. I've only had her home a little over 2 months, so I feel that she should still be a little tiny baby and I should have more little tiny baby time with her. Despite her age and activity level, she is only 12 lbs 1 oz. She is 25 inches long though! She's 50% for her height and 20% for her weight. So average height, low weight. Dr. Molly says Ellie should be 15 or 16 pounds. Oy. I'm struggling with getting enough food down her to pack on the weight, but whatever calories she doesn't burn up playing, go straight to her height! AND how do you force feed someone who is just finally showing some serious interest in eating and then starts to cut teeth??? No joke. Five months old (supposed to be 4!)and cutting teeth. I didn't expect it this early. The boys didn't start until they were 7 and 9 months old. But bless Ellie's heart, she doesn't cry that much. Even when she's hurting.

Okay. I think I've crammed all the important things in. Look for pictures soon (I hope!) Thank you all for your patience!

Our cute baby

Happy girl in her crib.


Okay, it's been longer than a week. And I made Chad blog on Ellie's birthday, so I guess I'd better get on the ball and do better.

When we went to the cardiologist on the 7th, I forgot that Chad wasn't with us when I took Ellie up to visit in the NICU before her appointment. I walked up to the front desk with her in her carseat and told the clerk we were here to visit. He got on the unit speakers and said, "Attention Staff: Elizabeth Thompson is here to visit." All of a sudden, people came from everywhere. The neonatal nurse practitioners, some of the nurses that took care of Ellie (including Jocelyn), Maria our Social Worker, and Dr. Null who is the director of the NICU. Everyone was so excited to see her and amazed at how well she looked. "She's so pink!" "Look how big she is!" Glowing smiles and congratulations from everyone. Even Dr. Null, whom I have only met once, took my hand in his and with tears in his eyes told me how happy he was for us. It was wonderful!

Then Ellie and I went downstairs to check in and wait to meet Phyllis. It was her day off, but she wasn't going to miss seeing her girl! I invited her to come into the appointment with us, because she's practically an adopted aunt and she was very helpful with answering the doctor's questions. She brought Ellie a birthday present too which was very sweet. She's working with a very sick baby right now and said that she misses her girl and her smiles. We miss her too...but not enough to want to be back in the hospital.

Yesterday was Ellie's 4 month check up with the pediatrician. Dr. Coopersmith was very impressed with how well she was looking and growing so we don't have to go in for weekly weigh-ins anymore. Drumroll please........Ellie is now 11 lbs. 2 oz! She has gained 2 pounds since she's been home! She is 23 1/2 inches long and getting chubbier! And so cute! While we were waiting in the examination room, I put Ellie on her tummy and she pushed up on her arms for the first time! I got a couple of pictures, but not very good ones.

We have really struggled to get Ellie to eat. Chad was the one who could really get her going, but now just in the past 2 days working with her, she WANTS to eat. Hooray! Yesterday she only took 16 cc's total. Today she took 42 cc's!

I've started taking Ellie out in the stroller in the evenings for fresh air and exercise for me (believe me I need it!) I have a neat little bug net that fits over her seat so the mosquitoes and people can't get at her. The first night I took her out it was dusk and she was wide eyed with wonderment at this new experience. She loved it until the train went by. We were walking past the park just down from the tracks and the whistle went off and it scared her. Amazingly enough, when I told her it was okay and she saw that I was there, she stopped crying and was just fine. This little girl is going to take on the world with no problems.

Me and the bumble bee Auntie Phyllis gave me for my 4 month birthday.





Hi Aunt Marco!




Grandma Anne came to see me.


Ooh I am strong enough to push up on my arms!

I can sleep just like Marty McFly!