Ellie Dawn

Happy Halloween!

2007-10-31T18:48:00.000-06:00

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

2007-10-24T22:20:00.000-06:00

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!

2007-07-07T21:34:00.001-06:00

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

2007-03-07T21:39:00.000-07:00

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

2007-01-07T22:23:00.000-07:00

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?

2006-10-15T21:36:00.000-06:00

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

2006-09-03T21:35:00.000-06:00

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

2006-08-29T22:20:00.000-06:00

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

2006-07-19T21:16:00.001-06:00

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!

Happy Birthday

2006-07-07T22:41:00.000-06:00

So, I suppose if you are four months old today, we should say happy birthday. Doesn't really make sense because birthdays are celebrated annually.. but oh well.

We had a pretty good day today. It started out bad, Ellie woke up at 5 AM dry heaving for about 10 minutes and couldn't settle down for quite a while.

We took Ellie to the cardiologist though and she got a clean bill of health.

She's 10 lbs, 10 oz and 23 1/2 inches long and is in the 5th percentile for her height and weight. Quite a change from Harrison who was in the 95th when he was born. But they are just glad that she's on the charts.

Dr. Cowley also took Ellie off her lasix medication. This means that she is not on any medications for her heart. Yeah!

We'll be going in for an ECG next month to see how her heart is doing and also to talk with GI Specialist Dr. Molly O' Gorman

Oh, BTW, for all those interested, Ellie's eyes are the deepest of blue. They are a very pretty color, I love to stare at them as she smiles at me.

The Week in Pictures

2006-07-06T22:02:00.000-06:00

Ohh I love pink!

I've decided that I can only blog about once a week. So for those of you who check for new things daily, I apologize. I of course, shall blog tomorrow night because it is Ellie's birthday tomorrow.

Anyone notice something strange about this picture? Our Fourth of July was a trip to the hospital to get the NJ tube replaced again. Ellie sweat the tape off of her face that keeps the tube in place. She then got tangled in it and pulled out the tube. This is a very difficult thing to catch when it happens at 7:00 in the morning. But I got some great pictures of her tube free before we left!

Ellie's new cousin was born a week and a half ago. So Grandpa Don, Grandma Debbie, and Aunt Katie came up to the hospital to see her and then stopped to see Ellie. Katie was very excited to get to see Ellie for the first time!

My military brothers were in town last weekend for the 4th, so they came to visit and we got pics.

Hey look! Jake smiles!

I think Aunt 'Laira wants one!

Uncle Josh and Cousin Emma visiting

I think brothers are best of all.

Memoirs of a Zombie

2006-07-01T10:53:00.000-06:00

This girl is a full time job by herself. I don't know how people with more kids than I have can do it. I feel like "Night of the Living Dead." It's just like when you bring a newborn home. No sleep, no brains, no ability to piece thoughts together let alone speak in coherent sentences. But hey, my Ellie is home and I get to hold her a lot!

Ellie is now 10 lbs 3 oz! She is very happy and has dimples in her elbows. She still throws up sometimes, but not as often, and usually not as violently. She is eating much better from a bottle, but it's going to be a long time before she can come off the feeding pump. She barely takes 30ish cc's three times a day. She needs to be taking around 100 cc's per feeding 8 times a day.

She adores her brothers and they love having her here.

I'm going to say the "h" word now!

2006-06-25T18:27:00.000-06:00

Home at last!

I love Daddy, he loves me...

Worn out from visiting the pediatrician.

Wow, what a crazy couple of weeks! All last week I was trying to prepare to bring Ellie home. I thought I was ready, and then I realized all the little things I still had to do! For minor update of that week, click here .Then this week has been getting used to having her home and her schedule and needs. All those hours in the hospital paid off, I know what I'm doing most of the time!

Coming home was strange for Ellie. She had never been outside before EVER. Home was a new experience for her, but after a couple of days she started feeling more comfortable. Her brothers love having her home and come into my room at all different times of the day to see if she's awake and can play. Alex didn't quite understand that he couldn't bring friends in to see her whenever he wanted. What's the point in having a baby sister if you can't show her off? He and Harrison are having to adapt to the fact that they can't have friends over to play in the house, only outside.

Chad stayed home this week to help me. I thought that since I knew all the ins and outs of what Ellie needed things would go pretty smoothly...and they do to a point. She is on 6 medicatons that have to be taken at different times of the day, and some of them 2 or 3 times a day. Plus she has her NJ tube in and is connected to a feeding (kangaroo) pump 20 hours a day. She is also on a heart monitor at night. (The first weekend it was hooked up all day long). Add to this her bottle feedings up to 3 times a day, diaper changes, her still throwing up and then you have to change her clothes (we're on the 3rd outfit today) AND my needing to pump to get breastmilk for her....it doesn't leave much time for insignificant things like sleep and showers. I don't know what I'm going to do tomorrow when Chad goes back to work and I have to start paying attention to the boys again. He's been taking care of them while I've been taking care of the baby.

All in all, Ellie is doing very well. She actually wants to eat from a bottle, but never finishes the entire thing. But hey, it's an improvement. She isn't throwing up as much. (I do have to hold her a lot to keep her upright so she doesn't lose her lunch after she eats. I'm borrowing a snugli baby carrier from my friend Wendy so I can start moving around the house and maybe get something done). She loves to look around and play and try to talk to us.

Auntie Phyllis called us this week to see how Ellie's doing. I put the phone up to Ellie's ear and Phyllis talked to her. The look on her face was priceless. She recognized that voice and was looking all over trying to find Phyllis!

Yellow Chart Treatment

We took Ellie to see the pediatrician this week. It was an information gathering for him to know what she needs and what needs to happen for her. I was kind of nervous taking her to the doctor's office, especially when her discharge orders clearly state to keep her out of public places for 3 months, but it was just fine. Not only are there 2 seperate waiting rooms there, one for sick kids and one for healthy kids, but the minute we walked in the receptionist asked, "Is this Elizabeth? I'll take you right back." She then went on to explain that Ellie doesn't have to sit in the waiting room. Even if there is a line in front of us we are supposed to go right up to the desk and say, "I have a Yellow Chart Child," and they will take us right in to wait in an examination room. The receptionist explained that sometimes parents bring their children in for their "well child check ups" with runny noses and bring them into the healthy waiting room side anyway. They say, "I didn't think it was a big deal, it's just a runny nose!" But for Ellie, it is a big deal. Her doctors are very concerned about her catching a virus because it could affect her heart. So, like movie stars who get red carpet treatment, we get yellow chart treatment.

Wow, this is a long blog, but this is the first time I've even had a chance to sit down and write anything. I've been walking around like a zombie for a week. I can't blame my girl, she sleeps through the night. It's getting up to pump and to fill her feeding bag. I can't put more than 4 hours worth of formula at a time in her pump because it will start to go bad if I do. So, 3 or 4 hours of sleep at a time is about all I get. Then I get up and give her medication at 8:00, 9:00, 9:30, two at 12:00, 2:00, 3:00, and then the 8, 9, and 9:30 again. She's on Prevacid and Zantac twice a day to help with her reflux. Lasix once a day for her heart, synthroid once a day for her thyroid, actigal 3 times a day for her liver enzymes, and vitamins once a day. Some of these medicines cannot be taken at the same time as other ones or they don't work. I have to say, it beats the heck out of all the meds she was on before! (around 15 at one time) So.... I can now rival any CEO of a big company with having important things throughout the day. I think I should have my honorary nursing degree in about a year.

D Day!

2006-06-16T22:56:00.000-06:00

Yes folks, the event has happened, Ellie is home.

Here's Ellie prepping for the journey home.

Ellie was very happy to go home.

Phyllis was her nurse that day. She said that she'd have worked no matter what, there was no way that she was going to miss this day.

Jocelyn also was there, she's been another of Ellie's primary nurses.
As we were walking out the door with Ellie, all of these nurses and attendants came out of the woodwork and started cooing at Ellie and congratulating us. I videoed the whole thing, so watch for that coming soon.

This is our go home pic. If you stop by the NICU at Primary Childrens, you should see this posted on their wall.

Phylis had to carry her out of the hospital.

Here she is in her car seat. Phylis was trying to pack up everything for us. Gave us extra diapers, formula, even the bug that Ellie likes so much. She said she couldnt sanitize the bug, so we might as well keep it.

There were tears leaving, everyone cried.

At Wendy's, picking up the boys, we were greeted with a surprise.

The boys were elated, they had a hard time not smothering their new baby sister.

Once we were home, the cerimonial removal of the wrist band.

Ellie was pretty tuckered out after all that, she slept through the night without waking up. No fuss from that kid.

More to come... Saturday was NOT so uneventful.

Catch up on the week

2006-06-16T22:55:00.000-06:00

I'm confused. Why all the hubub?

Ok this was supposed to be full of all the stuff we did the week before Ellie came home to get ready for her like, go to CPR class, make 5 trips to Wal-mart because I kept forgetting things, run all the errands and pay all the bills and all that boring stuff that nobody wants to hear about. But it's all a blur to me, so I'll just show some of the pictures of Ellie getting ready to go home.

Ellie had to have a car seat check. This is where she has to sit in her carseat for the amount of time it takes us to get home so they can make sure she'll be okay on the ride home. She's hooked up to all the monitors so they can catch anything like not breathing or something.

Ok. Something weird is going on here. Everyone is excited about something, but I don't know what it is.

Playing on the floor with Debbie from PT one last time.

On the day we left, Phyllis waited for me so I could give Ellie a bath and put her in clean clothes right before we left...so she would be clean for 5 minutes while we took pictures before she urped.

Getting a tubby before leaving the hostible. Better than breakfast in bed!

Phyllis is happy for me, but I am sad to leave.

On the day Ellie was born, Grandma Kara came over to the house and painted her room so that it would be all ready for her when she came home.

Fairies waiting for Ellie in her room.

Pretty pink crib in Ellie's new room.

Give me a "D" !

2006-06-12T23:55:00.000-06:00

Ellie went in for Cath lab today. Wonders will never cease with my little girl. Dr. Cowley first put in the catheter and checked her blood flow to her heart and lungs. Then he measured the gradient (I'll have Chad look this up for you). She needed to be at a 50 if they were going to have to balloon the valve. She's only at a 30. So the Dr. came out smiling and said he didn't need to do the balloon right now. She will still probably down the road, but for now she's doing great!

He showed me the very first echocardiogram (ultrasound of her heart) they did the day she was born. Then he showed me the one they did when she turned 3 months old. You would never know they were the same heart! Her function has improved that much! Then he asked me what, besides her heart, was keeping her in the hospital. I told him just her NJ and getting her feedings figured out, but that we could take care of all that at home. He said that he was all for getting her home.

So.............................................. How does Friday sound? As in this Friday! That is the goal. Now, whether it happens or not, we don't know. It all depends on Ellie, but everyone from Phyllis to the Attending Physician is working to get her ready for her "Picnic Day." They don't say the "h" word in there. It's a four letter word in the NICU, and they are very superstitious about it. They told me everytime they say the "h" word, something happens to prevent it happening on that day. So they call it a picnic day. I think Friday sounds like a great day for taking my baby girl for a picnic.

So Phyllis has already started teaching me stuff I need to know to take care of Ellie. Chad and I have to take a CPR class, learn how to administer medication, and run a kangaroo pump. It's a pump that has a pouch to put her formula in to give her continuous feedings through her NJ tube.

We're keeping our fingers and toes crossed!

The truth about Billy Bob

2006-06-11T20:47:00.000-06:00

I am about to admit something that most people won't admit to anyone ESPECIALLY their spouse. The reason I keep making billi jokes is that Chad dated a girl in high school named Billy Rae. I, of course, have always referred to her as "Billy Bob" because of the green eyed monster Shrek... I mean jealousy. I don't care who you are, you're always jealous of your spouse's previous flames. I'm sure Billy Bob is a perfectly nice girl, or she wouldn't have dated Chad. Of course, she did Dear John him on his mission, but that's beside the point. I have therefore been able to vent my feelings about her vicariously through my daughter's billiruben problems. I know I'm pathetic, but I'm human so please cut me some slack.

Drumroll please............. Ellie's billi count is down to 1.8! (I knew she was looking more pink) This means she gets to go off another drug! The actigall is GONE! Hooray!!!!!!!!!!! One of the side effects of actigall is nausea. Hmm... interesting isn't it? One more thing that may help Little Miss Pukey not have stomach reversal quite so much.

Happy note: She's up to 8 lbs 15 oz!

We took the boys to see her again today and Alex kissed her goodbye on her head. No picture because we left the camera in the other car. The boys will stay with Wendy tonight because I have to get up at 6:00 in the morning so I can get down to the hospital before Ellie's heart ballooning. This is a big deal for me because I do NOT do mornings well. Anyone in my family (Chad, my kids, my parents, my brothers) can testify of that. But my girl is worth getting up for. I'm praying for everthing to go smoothly so she can keep improving like she has been and COME HOME SOON.

Karma Chameleon

2006-06-09T22:43:00.000-06:00

I'm really hoping that the Cath Lab is going to help keep her heart rate from dropping when she pukes so she stops turning blue. At least she's looking a lot less yellow! She is finally starting to look pink.

If I chew on this sock hard enough it should start tasting good, right?

This little girl is rooting around like crazy, but try to feed her and she loses it...literally. Even her binki makes her urpy. The only things she wants to suck on are her fingers. She did take her binki for a few minutes, so I tried feeding her. All I could get her to take was 5 cc's and she promptly upchucked it right back up. Thank goodnes for the NJ tube to put weight on her. Ellie is exactly 4000 grams tonight! Yipee! That's 8 lbs 13 1/2 oz. For those of you paying attention, that is a 3 pound and 1/2 ounce weight gain from her birthweight. Hooray!

I'm so glad Mommy is here to rock me to sleep!

Mommy's back!

2006-06-09T10:02:00.000-06:00

Yesterday was my first day back to see Ellie after 6 DAYS! I was worried she had forgotten me or thought of me as another of the many people that take care of her all the time. Well, my worries were put to rest. She looked very happy to see me and then promptly cuddled up to me and went to sleep. The nurse commented that it was probably the best she had slept in a week. Then when it was time for me to go, I put her back in bed and she looked at me and fussed. She could tell I was leaving and she didn't want me to! I had to sneak away. It's nice to be wanted. :)

Here are some tubby time pictures!

The pendulum swings

2006-06-07T21:31:00.000-06:00

Remember when we were worried about shortening fraction and ejection fraction? Well, you may recall that normal ejection fraction is 55 - 60%. Ellie's is now 73%. Normal shortening fraction is 35 - 40%, Ellie's is now 43%.

There is good and bad news to these numbers. As we have found in our stay at Primary Children's, too much of a good thing is always bad.

The good news is that Ellie's heart is getting much stronger. Her left ventricle is not nearly as dilated and the ventricle wall has thickened as any muscle would as it gets stronger.

The bad news is that as her heart has gotten bigger, her aortic valve has gotten thicker. It is having to work harder to push the blood out of the valve, hence the increase in the numbers. So it was proposed today that Ellie go in for another catheterization and ballooning of that valve.

The doctors, and thusly we, are very optimistic about this procedure. If it works properly and there is no regurgitation or leakage created, it should give Ellie more energy. This should help, in turn, with her eating.

Interestingly, this doesn't seem to be delaying the idea of getting her home. Phillis and Dr. Ethridge (today, being the FIRST time I talked with her that she DIDN'T freak out) both commented on getting her out as soon as possible. Teri and I are going to a C.P.R. class on Saturday to prepare. Yay!

P.S. Teri is better now, so we should see more pictures :)

Down Billi, Down

2006-06-04T18:08:00.000-06:00

Chad's brother Jeff asked me last week how the baby was doing. I told him her billi was down again. Then he said that whenever he asks me about her, I tell him about a different baby. It took me a minute to figure out he was talking about "Billy." Well, bili is down to 3.7 today. WAHOO! This is definite progress. I just hope it keeps going down instead of creeping back up like it did the last time she was this low.

They decided in rounds today to not give her a bottle until tomorrow when Debbie from Physical Therapy can go work with her. Ellie has absolutely refused to PO feed and I think it's because she has made the connection that if she eats she throws up. So we're back to square one on teaching her to eat again.

I'm sitting home with a cold, and Chad is practically over his, but we decided to stay home anyway and not take the chance of sharing it with our girl. This totally stinks. I tried so hard not to catch it, and then I did anyway. She's so close to getting to come home that we don't want to jeporadize her health to hinder that possibility. I hope mine only lasts 2 days like Chad's did because it's awful not to get to go see Ellie.

Bye Bye Drug

2006-06-02T23:42:00.000-06:00

We got rid of one of the three heart medications! Ellie is off the Enalopril. They are going to do an echocardiogram Monday or Tuesday, and then will probably take her off the Coreg (carvedelol).

Ellie played on the floor again today. I got some very cute pictures and some video of her with Debbie the physical therapist. Everybody loves watching Ellie smile and try to talk. She has a very strong neck and is building up her muscle tone very nicely. She loves looking at people and has gotten really good at smiling.

I sit and rock her a lot now. She is very cuddly. I hate putting her back in her crib when I have to leave because she sometimes wakes up ready to play and I can't stay. She is a doll!

Miss Personality

Miss Flirt

Mischievous

The "D" word

2006-05-31T22:45:00.000-06:00

Guess what Phyllis brought up today? The word DISCHARGE. As in leaving the hospital. As in my jaw hit the floor.

Phyllis said that Ellie's doing so well that it's time to get the ball rolling on getting her home. She is coming in tomorrow (on her day off) to talk to the Attending Physician (Dr. King this time) and try to get a game plan in place. She wants them to set up a Care Meeting with everyone from the different places (Cardiology, GI, etc) and have a pow-wow on what needs to happen to get my baby home. WAHOOOOOO!

I have to warn you all though, visits will have to be very restriced for a while. I'll let you know more as we get more info. But from what I understand, no taking her to the store, to church, anywhere there are crowds of people. I have to keep her home and we all have to wash our hands before we touch her. I'm going to have to stock up on anti-bacterial hand sanitizer and probably take the entire summer off from piano lessons.

Sweet girl.

Here is a picture of the beautiful bow Phyllis put in Ellie's hair today. As you can see, she has the very same hairdo that Papa Don and Papa Wayne do.

Hi Phyllis!

Dreaming of beautiful butterflies.

Serious contender

2006-05-29T22:56:00.000-06:00

This girl can't seem to figure out that eating + weight gain = going home. All she wanted to do was play today. She wanted no part of a bottle from me. And she upchucked the one Phyllis gave her earlier. The funny part is that she gained 60 grams last night and another 60 tonight. She's up to a whopping 8 lbs. 6 oz. That NJ tube is the only thing keeping her going.

Her billi is down again. Hooray! Her number is 5.3. Her other liver tests were up again though, which doesn't make sense. But what in this entire experience has made sense? Not much.

By the way, for those wondering why she is finally wearing bows in her hair, I went and invested my money in the name brand KY jelly. One of the nurses told me the generic stuff just won't keep the bows in their hair. This is especially true with Little Miss Sweat A Lot. The nurses would put in a bow and stick it on with the cheap stuff and it wouldn't last 20 minutes. But now, hey hey hey, she looks like a girl! Sometimes generic just doesn't cut it!

Harrison got to hold Ellie yesterday and he was VERY excited. He couldn't wait for his turn. He kept bugging me so I would shorten my turn to let him have her. I made him wait, but I think he thought it was worth it.

Mommy, can we go home yet?

All pooped out from playing.

Cutie pie.

Big brothers are terrific!

Cracking the Ellie Code

2006-05-26T22:42:00.000-06:00

I feel like we're living in a book where there is a treasure to find or a code to crack and we have to figure out all the clues before we can get to the treasure. All the pieces have to fit together just so before we solve the mystery. A glitch in the works can blow up in your face. Ellie's health ducks have to be in a well ordered row and quacking in unison before she can come home. The frustrating part is I'm not the one who gets to be the brilliant heroine. I am ditzy sidekick who stands to the side looking and feeling clueless. I just get to be the comic relief and let everyone else look really intelligent. The doctors can analyze all the bits and pieces, and Chad can follow it all and converse in their lingo. I'm the one who bases everything on emotion and I just want it solved so I can have my baby.

The upper GI test showed that she has mild reflux, so she should be able to grow out of it. Dr. Molly said that she is comfortable with Ellie going home with the NJ tube in and that she would do follow ups in clinic with her. Ellie is getting another echocardiogram next Wednesday. Hopefully it will tell us good things so she can come off the carvedelol. Her liver enzymes are coming down a little more too. Dr. Miner, who is the Attending Physician this time around, thinks that a combination of the TPN and not getting enough blood flow to her liver to start with may be why it's taking so long for Ellie's liver to heal. There are a few more tests they want to run on her liver and kidneys to make sure they're not missing anything. We're getting closer!

Side note: Phyllis found a dimple on my baby's cheek today. I wasn't quick enough with the camera to get pictures, but it's there!

All in favor of Ellie going home say "Aye"

I could be America's Next Top Model.

You must have been a beautiful baby....

Speaking of ducks, they add a nice glow to offset my golden tan.

Daddy time.

I'm a big girl now! I can sit up strong with help!

Gobble Gobble Gobble

2006-05-24T20:59:00.000-06:00

Our baby girl now weighs roughly the same size as a small Thanksgiving turkey without the stuffing. She is 8 lbs. 1 oz.! She has almost caught up to her brothers' birthweights! (Harrison was 8 lbs. 5 oz. and Alex was 8 lbs. 2 oz.)

Today she was smiling and trying to coo and looking like she was really wanting to talk to me. I could have gotten some great pictures, but I was too busy enjoying her to take some! I'll try not to be so selfish tomorrow so all y'all can see how absolutely adorable she is becoming.

The doctors have FINALLY decided to perform an upper GI test on Friday to see if they can find what on earth is causing this girl to reflux so bad. If they can find the problem and fix it (and barring anything else major going wrong) she could come home soon.

Janna & Co.

2006-05-24T00:13:00.000-06:00

I have to take today and recognize my good friend Janna and her family. They have had their all girl household turned upside down by having my boys over every day while I'm in the hospital with Ellie. The older girls walk to school with Harrison every day, Janna takes Alex whenever I drop him off, then she feeds him and makes sure he gets to preschool, then she has both boys after school until I get home around 5:00 or when a grandma can come pick them up. I'm surprised she still speaks to me, but I am very grateful for her and her friendship. I think she's added a few thousand bricks to her mansion in heaven.

I decided a long time ago that I was going to re-instate arranged marriages for my boys, but now I am really determined to do it!
Look at this picture of these adorable girls and you'll know why!

The irony of this picture is that Alex is only 6 weeks older than Emily (the one on the far left) and he's a whole head taller! (No I do NOT feed my kids Ortho-Grow!)

This is Rachel. Her 3rd grade did a fundraiser for heart research by jumping rope and getting donations. Rachel jumped in honor of Ellie, which I thought was very sweet.

Ellie got to have some breast milk from a bottle today, and she kept it down! Wahoo! She was a lot less gaggy today, and I hope she keeps that up. I got to play with her on the floor for a little while again, and that was fun. She didn't want to be done, but my back was done so she had to be too.

I watch the fishies go round and round and they sing to me.

Tummy time on the floor only when my stomach is empty.

How can anyone resist this sweet baby girl?

This is what I had to leave today, folks. Just rip my heart out, it would be easier.

Something important?

2006-05-22T23:15:00.000-06:00

I find it incumbent upon myself to say something important whenever I blog. This would be the reason, you may have noticed, that Teri has been doing all the blogging of late.

I would like to first thank all of those at CaseData that tried to give blood today and those that succeeded. I realize that I am biased, but I cannot think of a better cause. For all those that were squeamish, talk to Tara and give next time, she came through with flying colors.

Ellie's billiruben count is at 6.4 today, down from 7. This is good, but you can still see the jaundice in her skin and eyes.

You will also notice no doubt, that she has two tubes in her nose. (kinda hard to miss, huh)
The one in her left nostril is her NG (Nasogastric) tube. This goes through her nose (naso) into her stomach (gastric). The other is an NJ (Nasojejunal) tube. Also nasal, this terminates at the top of her small intestine or jejunum. She has had such emesis lately that the doctors wanted to bypass the stomach (nj), and she has had such acid reflux that the doctors wanted to pull out the acid(ng).

Otherwise she is doing very well, she is acting just like a baby her age should act. Despite the fact that she tires very easily, she is awake and alert for most of the day and sleeps most of the night. She loves the little toys in her bed. We have quite a few now. Including, the apple, the bug, and the mobile, pony and mirror, seen here.

A more spoiled child you will never find. I want her home so badly.

News in a minute

2006-05-20T21:57:00.000-06:00

This is just a quick update since I didn't get to go see Ellie today. She's on a double dose of Prevacid, which the nurse says is helping her a lot. She hasn't thrown up today and seemed to be feeling much better. She lost 10 grams, but she's still on an upward climb on weight gain. She hasn't bottle fed for a couple of days because she needed a break. Eating is hard work! She gets her lab work done again in the morning and we'll see if her liver enzymes and billi are still up, moving up more, or finally starting to come down.

Thank you all again for your love, support, and prayers! It makes all the difference!

Golden Child

2006-05-19T22:09:00.001-06:00

One of Ellie's nurses chose this lovely ensemble for her to wear today. I think she must have been colorblind. Or else she thought it would bring out Ellie's lovely tan.

GRAPHIC PARAGRAPH ALERT!!! DON'T READ THIS IF YOU'RE SQUEAMISH. We're not drinking people, so I have never experienced the joys of hangovers, getting sick, or trying to be sick with nothing coming out. Unfortunately, my daughter has experienced all three of these without ever consuming a drop of alcohol. She kept doing the last two throughout the day today. They can't figure out what's wrong with her. One theory is that they are giving her too much volume in her feedings, so they've cut back just a little bit. It seems to be helping. They are also talking about doing an upper GI test where Ellie swallows dye and the watch how it goes through her system to see if there's a kink somewhere.

(OK IT'S SAFE NOW) On the upside, she's gaining weight! Phyllis told me Ellie weighs 7 lbs 11 oz and I said we should get her a slurpee to celebrate. (Chad thinks my puns are dumb, but I thought this one was funny).

They call me Mellow Yellow

For those of you in deep wonderment about the pink socks on her hands, they're not to keep her from scratching herself. She doesn't do that. They're to keep her from pulling out her nj tube, which she did pull out 5 mm last night. If she pulls it out too far, she has to take another trip to the first floor for someone to put it in and then x-ray her to make sure it's in the right place. Much more complicated than just shoving the ng into her stomach.

I gotta tell you, if you're going to have a sick baby (I don't recommend it but sometimes you don't have a choice) Primary's is the place to be. They have been really good to us. They do of course have to give us the bad news with the good, and we sometimes get really frustrated with the system, but they are trying their best to help our daughter and that means a lot. It also helps that they're one of the best hospitals in the country and the BEST one to have a heart baby in.

Not feeling so groovy.

2006-05-18T21:31:00.000-06:00

Do dodo do do feeling ookie

Today was not such a hot day for Ellie. She didn't feel good all day and they couldn't figure out what was wrong. Her temperature was up a little, and she acted sluggish which is not like her at all. They checked for bacterial and viral infections but both came up negative. Right before I left she lost her lunch and filled her diaper at the same time. She seemed to feel better after that. The worst part about her getting sick is watching her panic because she's choking and can't breathe. The nurses have to really be careful and watch that she doesn't asperate.

Ellie did gain 30 grams tonight (1/2 an ounce approx), so that's a good healthy weight gain. We didn't get to play today because she just felt too yucky. But I did hold and rock her for a while. I hope she's feeling better tomorrow.

I look cute, but I feel awful.

This is the cute poster the Child Specialists made for Ellie. It hangs on the wall by her bed. It's hard to read, but it tells fun things about her. Things like her nickname, her siblings, what she likes to play with, how to calm her down, and things that bug her. It's kind of hard to read in the picture though.

Playtime

2006-05-17T21:22:00.000-06:00

Look at me! I can smile!

We had a very fun day today. I got to play on the floor with Ellie. Debbie the physical therapist came in and showed me what to do. There's a mat we put on the floor, then a clean blanket, and then a boppy pillow. Ellie can sit in the boppy pillow and track objects. She can also grab at toys that are rubbed on the back of her hand. We also practiced standing up so she could feel her legs. It was like playing with a regular healthy baby! Stay tuned on the videos, I took one of her tracking (watching while turning her head to look at an object) a toy apple with a bell inside it. It's her new favorite toy.

Ellie is doing well on the nj feedings. She only threw up a little today, and took a couple of bottle feedings. She weighs 7 lbs 10 oz. This girl needs to quit retaining water. She needs healthy weight gain to get out of there.

Oooh piggies!

I like getting out of bed and playing!

An easy toy to grab.

Ellie loves this apple. I'll have to get on e-bay to see if I can find one...it's
Fisher Price circa 1972.

I'm watching the pretty red apple.

Cows are only holy in India and parts of Pakistan

2006-05-16T22:49:00.000-06:00

Guess what everybody??????!!!!!!!!!!!!!!!! Ellie's heart function is in the normal range! (Insert your "holy cows" here) Her ejection fraction is 55% and her shortening fraction is 22%! Both of these numbers are on the low side of normal, but it still counts! This is the best her heart function has ever been. Dr. Tristani from Cardiology was VERY happy with these numbers and said that if Ellie's heart keeps in the normal range, she can go off one of her heart medications. WA HOOOOOO!!

They put in the nj tube today. This is the tube that bypasses the stomach and goes straight to her intestines. Hopefully this will help her reflux problem. They're going to leave the tube in for 2 weeks, then put her back on the regular feeding tube and see how she does. In the mean time, she can bottle feed as much as she wants to without the pressure of getting her to eat it all. She threw up 8 times yesterday. It came out to about 73 cc's which is almost 2 1/2 oz. She can't gain weight doing that and it's going to ruin her esophagas if it keeps up.

By the way, she is 7 lbs 7.2 oz tonight, for any and all who are interested. Sorry, no new pics tonight. I promise I'll remember the camera tomorrow.

A Monday Limerick for you

2006-05-15T21:21:00.000-06:00

There was a sweet baby named Ellie,
Who's feet were a little bit smelly,
She was cute as could be,
but the problem you see,
was she couldn't keep food in her belly!

Cardiology didn't show up today. Nobody in the unit even knew which doctor from cardio was supposed to be here this week. Phyllis said that it's not Bad News Tuesday today anyway, so we've got to wait until tomorrow for that kind of input.

Ellie was really sleepy yesterday and today. It's probably caused by her high billi count. If it is the carvedilol that is causing her high billi, it may take 2-3 weeks to get her off it, let it clear her system, and then try something new. If it isn't the carvedilol, they're hinting again at doing a liver biopsy. :( I hate this process of elimination. It's frustrating and time consuming.

The good news is, we should be able to take her to Bear Lake with us in August. This is assuming she's out of the hospital by then. She'll be restricted from having people in her face, but she should be able to go. Start scrubbing up, Gramma Susan!

Compare my current legs to the chicken leg of 6 weeks ago!

Is this how Alice got through the Looking Glass?

I will keep my food down. I will keep my food down.

We're getting closer

2006-05-13T23:08:00.000-06:00

I got to the hospital today and this is what I saw.

My Ellie is a big girl now! She's in a crib!!! Party at the Thompson bedspace!

They also took out her piccline today because they didn't need it anymore...she's on full feeds of 53 cc's! (She gets continous feeds through the night and PO feeds/ Bolus during the day) These are two HUGE steps toward getting her home. They are going to run liver tests tomorrow to see if they can solve the billi mystery. If they can figure it out, our girl will be coming home soon! Of course, she's got to quit upchucking so much...especially on the nurses. She nailed Jocelyn today (her other day primary nurse) so there was another changing of the scrubs.

Her heart is doing well on the carvetilol and the dijoxin. Cardiology seems pretty happy with how she's doing right now. We are counting our blessings.

Surprise!

I'm a happy, contented bugwatcher

Someday I am going home and then I will be mauled with love.

Tomorrow is Mother's Day, but this is the bib the nurse put on her. Go figure.

The smell of heaven

2006-05-13T00:11:00.000-06:00

I've got to tell you, nothing in this world smells better than a freshly bathed baby that is slathered in baby lotion. They smell just like heaven. The only bad part of it is when the mommy has to leave the sweet smelling cuddly baby at the hospital and drive home.

Of course, my hands still smell like baby lotion all the way home which just rubs salt in the wound. But it also makes me feel better, almost like some part of my Elizabeth is with me. I know, I'm weird. Just ask Chad.

On the positive side, she is weighing in at 7 lbs 8 1/2 oz. I personally think some of this is water retention, because she hasn't filled her diapers much today. Did I tell you she's 21 1/2 inches long???? For the curious out there, that's 4 inches of growth in 2 months. At least she doesn't look like a starving Ethiopian baby anymore. I'll try to remember to take a picture of her leg to compare with the chicken leg picture Chad took of her in March. It's an amazing difference.

Ellie's looking more yellow to me again today. She gets her billi count done again on Sunday, and if it's up again I hope they do that scan on her pituitary or something. I WANT TO BRING MY BABY HOME! (I know what you're all thinking. "Come on Teri, don't hold anything back, tell us how you really feel...")

Hey look! It's a baby!

Oooh. Look at the pretty bug. (The disco ball is broken)

Mom! The nurse is bugging me again!

I don't need a security blanket, I have a security piccline tube.

Don't you look at me in that tone of voice!

Three day update

2006-05-11T00:08:00.000-06:00

Alrighty, then! For those of you who are wondering what on earth is going on, here's the scoop: Ellie got a chest x-ray today to check on the size of her heart and it shows that it hasn't gotten more enlarged. Her hematacrit was down, so she got another blood transfusion and looks MUCH better. She's not eating as well at night as she is in the daytime (as proved last night when she threw up all over the nurse. It was so bad that Donna had to change into clean scrubs).

We took the boys down to see her again yesterday. It's funny to watch them with her, they love to sit there and talk to her or even just to look at her. Daddy stayed late last night to give her the 9:00 feeding and take care of her.

I went down today and got to give her a bath again. She promptly threw up on herself afterward...typical kid. She really loves to be held and cuddled and is becoming much more vocal when she wants something. This girl's personality is coming right out!

The nurse (Donna, who is one of Ellie's night primary nurses) said that if Ellie could keep her feedings down, she could come home. So we're crossing our fingers that we will keep making progress in that direction. Ellie weighed 7 lbs. 6 1/2 oz. tonight, but Donna thinks it's high because Ellie got blood today.

For those keeping up on Mommy, I'm starting physical therapy tomorrow for my back.

Little girls shouldn't be able to yawn this big.

Hello, stranger

Check out my nice round cheeks!

Silly Daddy

I think I gave birth to a pink frog or a paratrooper.

Have you ever seen bigger eyes than these?

Yo-yo dieting

2006-05-07T22:23:00.001-06:00

Happy happy birthday, Ellie dear!

I love Harrison, he loves me.....

What you talkin' about, Willis?

So not the drama. I'm a diva, I can take it.

Curiouser and curiouser.

For anyone who's ever been on a diet, you know the frustration of moving 2 steps forward, 1 step back. Or 2 steps forward and 1 1/2 steps back...Which technically is still progress. Ellie is creeping up on her weight, she's up to 7 lbs 3 1/2 oz. Woo Hoo!

She is also completely off the TPN, so now maybe her liver will start acting better. GI is going to check her again tomorrow and may order an MRI to see if her pituitary gland is what is causing the conjugated billiruben. (Her billi is up to 6 again. ) If it is her pituitary gland, then she can be treated with a medication for the billi.

We played hooky from church today and took the boys down to see their baby sister again. They were very excited and were very sweet with her.

Side note: I haven't been to see Ellie for a couple of days before this because my back has gone out. They've found 3 bulging disks in my back and I have to start physical therapy tomorrow. I guess this is very common in women who have had children, so they should be able to fix me right up.

People Change

2006-05-03T23:00:00.000-06:00

An interesting thing has happened since Ellie came back from her diagnostic catheterization (angiogram in adults) . She's overcome several milestones, or rather the doctors have overcome their worries. She's off milranone, the IV heart medication. She's now on carvedilol (coreg), that she takes by mouth. They've up'd the calories in her formula so she's now on the lowest amount of TPN (hyperalementation) of her little life.

Volume of formula still remains the largest problem, she's maintaining about 30 cc's every 3 hours. She need to be between 50-60 to come off the TPN completely.

She's 3180 grams right now (figure that one out Ethan!)

Oh, and did I say? They think they've found her gall bladder. It's VERY tiny, but it looks like its there.

Seasons Change

2006-05-03T22:28:00.000-06:00

On Monday, we got some very good news. RSV season is officially over! To celebrate this, Harrison and Alex came to see Ellie.

Yea!!! Brothers!
Oh goodie, a new toy!
I love you Ellie!

I'll get you! Give me my pacifier!... AHHHHHH!

Bald is Beautiful

2006-04-30T22:31:00.000-06:00

Ellie got a hairwashing this morning. When Phyllis brushed it with the soft brush afterward, a lot of Ellie's hair came off. I think she looks like a little old man with a tuft on the back of her head. You can see the new hairs coming in, but not very well in the pictures.

(insert balding grandfather jokes here)

Ellie lost some weight today, 40 grams. So she's 7 lbs 1 oz. She's 20 1/2 inches long, but at least she has round cheekies!

I know something you don't know!

Her billiruben count was up to 5.3 from 3.7 and her thyroid is low. Gastro Intestinal doctors are going to check up on her tomorrow. She's still eating 34 cc's every 3 hours, but some of it they have to give through her ng tube because she is throwing up sometimes.

Her artline came out today, so they had to poke her with a needle to run the blood tests. I left the room, but she didn't cry. They were worried she was septic again because of her liver, but her tests show no infection. I guess we'll see tomorow.

Pink Butterfly Girl

Letter from Ellie

2006-04-29T22:13:00.000-06:00

Greetings earthlings! I have decided to remain on your planet for the time being. I had a rather difficult time adjusting to this body, but I seem to be improving. My heart is doing much better than the doctors first thought, so now the plan is to stay the course and keep growing. I am now able to eat 34 cc's of formula and currently weigh 7 lbs 2 oz.

I am tolerating this new medicine rather well, but I have to keep an ART line in to monitor my blood pressure. This means I can't be held so much :(

I'm keeping my fingers crossed that on Monday, May 1st, the RSV lockdown will be lifted and my brothers will finally be allowed to visit me. I miss them.

I have rubbed off a lot of my hair because I wiggle so much in my bed to get comfy, so I look balder than I have before. It is growing back in a little bit though.

Thank you for praying for me and helping my family while I am in the "hostible." You have lifted the spirits and burdens of my mommy and daddy and my brothers.

Phyllis is the only one who can get me to stay on my left side.

Goodnight everybody...zzzzzzzzzzzzzzz

Square One?

2006-04-27T21:51:00.000-06:00

On Wednesday the doctors told my wife and I that Ellie had not progressed for 3 weeks. "She looks so much better clinically" I said, using their word for her overall appearance. "It's not good enough." Dr. Cowley said, "We are going to put her on the list for a heart transplant."

He continued, "We have 3 options. One, we could balloon the valve again, her valve is so thick though that it probably wouldnt help and might cause more regurgitation (leakage) back through the valve.

Two, we could do a valve replacement. She is not a good candiate for this however, because her left ventricle would probably not restart after a surgery like that.

Three, She could receive a heart transplant."

(He must have not done well in 2nd grade, 3 - 2 = 1 option)

By this point I believe my heart was in my little toe.

"We've been down this road before." I said. "Dr. Ethridge freaked out 3 weeks ago, said we needed to transplant, but she got better!"

Dr. Cowley continued "blah, need more info, blah blah blah de blah de this afternoon blah blah.....".

"OK", I sighed.

She went to the Cath Lab later that afternoon, when I saw her that evening, I couldnt bear to see her intubated again. We didnt feel like taking pictures.

The first word we got back from the diagnostic catheterization was that the pressure in her lungs was low, this means that she is a good candidate for a heart transplant. I guess that's good news.

This story has a happy ending however. My little Ellie continues to amaze and surprise them. A detailed analysis of the catheterization revealed that her heart function was much improved from what they could see on the regular echocardiograms, so she doesn't have to go on any list.

I hate doctors.

Just hangin' and waitin'

2006-04-25T21:57:00.000-06:00

These blood pressure cuffs are a drag. No, I just hate them.

Ellie gained weight today. She is now 6 lbs 13 oz. She also got another blood transfusion last night because her hematicrit was low. She looked nice and pink today because of it.

They have upped her to 30 cc's every 3 hours on her feeds. The nurse practitioner told me today that they want to slowly add to her feedings each day until she is on full feeds (46 cc's). This should take about a week or so. Then they want to slowly add breastmilk to her formula a little at a time.

Her picc line keeps coming loose because she sweats so much the tape loses its sticky. They have to be so careful with it because it is her lifeline. It's how she gets her medications and TPN and lipids so she doesn't have to have an IV stuck in her all the time. They've had to re-dress the picc line twice in the last 4 days. I hope she doesn't have to have it much longer, but who knows?

Tomorrow is the Cardiology/Surgeon meeting. I'm going down early so I can hear what they decide their next move is with Ellie's heart. I'm sure they're not going to rush into anything, I just hope for good news and ideas. I'm glad Phyllis is back from vacation tomorrow. She'll be able to stand up for what's best for Ellie.

Did you ever have to make up your mind?

Ah, to sleep. To dream. To not be bugged for 5 minutes...

Dancing Queen

Monday Monday...can't trust that day.

2006-04-25T00:19:00.000-06:00

Well, I thought today was going to be non-eventful. Wrong. They were just finishing up a full scale get-every-detail-you-can echocardiogram on my Ellie when I arrived at the hospital today. I talked to 3 cardiologists later and they told me that Ellie is going to be discussed in the Cardiology pow-wow on Wednesday. They want to take a good close look at her heart function and see where they need to go from here. Possibilities ranging from trying new medication to open heart surgery. I'm hoping for the former...but we'll see.

Ellie was also not supposed to get her labs drawn until tomorrow. They decided to do it today because her blood pressure was up just a little bit and they wanted to check her cortisone levels. Good news on the billi front: she's down to 3.7 from 4.1.

She gained weight last night and then lost it tonight. I think it was water retention rather than real weight gain. She's eating 27 cc's every 3 hours and lets you know when she's ready for it! You've also got to burp her good, or her stomach shifts into reverse.

I got to give her a bath tonight. No pics because who was going to hold the camera? My hands were full and Donna (Ellie's pm primary nurse) was supervising. We got cute pictures anyway.

Oh tay! I'd like a double cheesburger and fries and a shake...

Ooh ooh. I know! Call on me!

Hmmmmm dinner time!

Yummy! Fists!

En Garde!

2006-04-23T18:17:00.001-06:00

Back in 8th grade, my P.E. teacher taught us a lot of different sports such as golf, archery, badmiton, bowling, and fencing. When we started fencing, she had us practice positioning out body and pretending our index finger was the foil. Then we would move our feet back and forth and thrust and parry with our fingers. I thought we looked so ridiculous I came home and showed my mom. It has been a running joke between us since then and it looks like Ellie has caught on somehow...either that or she's going to try out for Lord of the Dance.

Now that this girl has decided to eat, that's all she wants to do! Chad told me he's fed her 3 times today and she's taken 24 cc's each time. They're going to up her feeds to 27 cc's tomorrow. She is also doing a fantastic weight gain...3070 grams. For those of us too lazy to figure it out (namely me) it's 6 lbs 12 1/2 oz. I think she's playing catch-up on weight gain from last month.

No procedures scheduled for tomorrow. I guess we'll wait and see what cardiology decides to do when the new doctor comes on tomorrow. I want patience, can I please have it now?

I want this tube OUT ALREADY! Uncle Jake knows how I feel....

This picture is a couple of days old, but it's actually a good one of Mom!

Insert Jeporady Theme here

2006-04-22T00:14:00.000-06:00

Do do do do do do do..... this may get boring. I feel like a kid that's waiting for a trip to Disneyland that may or may not happen. And if it happens, when? Then I feel guilty because I see the new little baby across the room from us that is a preemie maybe 2 or 3 pounds and on a ventilator. His parents can't hold him and I sit and rock my baby. We have been so blessed and there have been so many miracles with our baby that I have no right to complain about anything.

Ellie lost a little weight tonight. I think it was because she was awake almost all day. That girl does NOT want to miss out on anything by sleeping. She didn't keep her 3:00 feeding down for me today. I don't know if it was because she was wired or what. She just wanted to play. I did some strenghthening exercises with her that the physical therapist suggested and got her to nap a little while I rocked her. But I can already tell this little girl is going to be just like her brothers... perpetual energy child.

I don't get as many good pictures as Chad does, because I don't take 75 pictures each day. But here are my attempts.

Hmm. I see a tall man with grey hair and a goatee in my future....

Baby Steps...

2006-04-20T21:58:00.000-06:00

We're up to 3030 grams (6 lbs. 11 oz.)! AND eating really well from a bottle. Getting 10.2 cc's an hour and loving being awake more. Nothing else new...just waiting.... So we'll look at my baby some more, because Janna told me I have to put up at least one picture a day. I guess all of you want to see the progress, not just read about it. :)

Just call me cuddles

I've got to practice being coy early

Look! I already know "a" in sign language!

Mom, I look like a Borg off of Star Trek!

La la la la la la laaaaaaaaaaaaaaaaa

Quiet Day

2006-04-20T00:24:00.000-06:00

Ellie was pretty tired today. They upped her PO feedings to 4 a day if she shows interest. She is now getting 9 1/2 cc's every hour on her continuous feeds. She needs to get up to 8 full feedings a day before they can completely take her off the TPN.

Ellie got another echocardiogram today. These people are beginning to sound like a broken record, "No change." Basically, they're waiting for her to get completely off the TPN, wait for her liver function to improve even more, and then try a different heart medication. So we're playing sit and wait.

I just called Kitty (one of Ellie's primary night nurses) and Ellie is up to 3 kilos! (6 lbs 10 oz for we weird Americans who still use the English system.) Woo HOO! My girl is getting big!

Down with Billi!

2006-04-18T23:13:00.000-06:00

Hooray for another good news day! Ellie's billi count is down from 6.7 to 4.1. She is looking MUCH pinker and happier. Her kidney function is also doing better.

Yesterday the PA (Physician's Assistant) asked why Ellie wasn't wearing clothes and in a crib. The nurse on duty said that Phyllis told her Ellie wasn't ready. The PA said, "If Phyllis gives you a bad time, have her talk to me." I wanted to say "NO! Phyllis knows her best and doesn't want her rushed into too much!" But hey,who am I but the lowly mother who knows nothing? So they put her in real clothes (if you can call purple long johns real clothes), wrapped her in blankets, and turned off the warmer.

Hey, it's snowing outside, I need these long johns!

It turned out ok. Ellie lost 30 grams last night, so they think she was using up too many calories to stay warm. She's still in her warming bed. :)

I talked to the cardiologist today. Ellie got an echo yesterday which was a little worse than the one from last week. So what they decided to do was look at the last 3 echocardiograms at the same time to compare them. They all looked pretty much the same. The doctor told me it is hard to get objective results from these things because they are measuring just a slice of the heart, and they can never get the same slice two times in a row. They also take into consideration how Ellie is doing clinically. This means they look at her color, whether she's breathing on her own (she's off the oxygen again, yeah!), alertness, ability to eat, etc. They don't want to jump into just treating the numbers on a computer when she looks so well. However, Dr. Everett (don't worry, I can't keep all these doctors straight either. A new cardiologist every week!) said that they do want to consult with Dr. Cowley about perhaps doing another heart catheter. Ellie's Aortic Stenosis is now a milder case, but the valve is still quite blocked. This makes it hard for the heart to get the blood she needs through to her body. Doing another heart cath is tricky, because they don't want to make it so big the blood leaks back into the ventricle.

Chad and I both got to feed Ellie today.

The nurse fed her this morning, but forgot to vent the ng (feeding) tube, so Ellie threw it right back up. Venting her tube makes it so she doesn't have so many air bubbles in her tummy...my kids have all had problems with air bubbles and burping...we called Harrison the Spit Up King. She did much better with her parents feeding her :) The girl can down 25 cc's in 5 minutes with burping breaks!

I have some pictures from yesterday and today. She is getting to be more and more fun!

Hey, I look like a real baby!

I need a tailor! These sleeves have GOT to go!

Could I BE any cuter?

Easy, breezy, beautiful, Cover girl!

Happy Easter!

2006-04-16T21:33:00.000-06:00

Not much new today...except Ellie's Easter dress. Grandma Anne made it for her, so we dressed her up in it and Chad took about 145 pictures of her. (NOT and exaggeration!) I tried to pick out the best to show off our pretty girl. She looks adorable! (not that I'm biased or anything)

Chad got to hold and feed Ellie twice today. I don't begrudge him that, because I get to hold and feed her more than he does.

Technical info: During rounds they decided to up Ellie's bottle feedings to 3 times a day since she's doing so well :) She's getting an echocardiogram tomorrow and she looks pinker!

Now for everyone's favorite part....pictures.

This is the Easter card Ellie's nurses helped her make for us.

Holy cow, this girl has long feet!

I'm hungry!

You'd frown too, if your dad was setting off a flash in your eyes every 2 seconds!

Like my dress? It's one of a kind original from the House of Anne.

Alright! Time for lunch! That means Dad's not pointing the camera at me!

I don't even get to practice burping in private, do I?

Peek a boo!

I got attitude...just like yo' mama! Just call me Miss Thang.

Nice calm Saturday

2006-04-15T21:46:00.000-06:00

I got to give Ellie her 1:00 feeding today. She downed 23 cc's before she got tired. (Last night when I fed her, she did 30 cc's in about 5 minutes.) She gave me another poopy diaper (Chad will be glad he didn't have to change it) and she looks FANTASTIC. Her color is SO much better. It's hard to tell in the pictures, but she is getting pinker.

I didn't get much awake time with her today because she spent the morning awake and I didn't get there until 12:45. She was awake long enough to eat and then went back to sleep. Oh well. Chad and I are going down tomorrow and will spend all morning and most of the afternoon...maybe I'll get to have some awake time with her.

Last night she was awake for a while and we played. I really had a hard time leaving, but I knew if I didn't, I would be too tired to drive home. I can't wait until we can bring her home and I don't have to drive 45 minutes each way to go see my girl.

She was naked again today (of course with a diaper!), mostly because they need to keep an eye on her tummy to make sure she doesn't get bowel loops. It seems that now she has figured out how to bm on her own, she has exploding ones. If this sounds like an insensitive subject, understand that this kind of thing is VERY important for babies to be able to do, especially little girls who's livers are slow to work. So we are super excited when she can potty on her own :)

Hey, I'm trying to sleep here, lay off the flash please!

Hmmm...nice full tummy, Mommy's holding me, time for a nap!

Hey look! I could be a Solid Gold dancer!

Modesty is a virtue.

2006-04-15T00:39:00.001-06:00

Oh, my baby girl is doing so well. She has clothes! I came in today and she had this cute little onesy on. Even more exciting, she pooped all over it later in the night by herself! We were thrilled.

I made my little girl a promise soon after she was born. I said that if she didn't give me any messy diapers, I'd get her a car when she turned 16. She hasn't let me down yet, Teri had to change this one. ;)

So, we know the heart is doing better, and it seems the liver is doing its thing. She's up to 30 cc's every four hours. She gets mostly gavage (tube) feedings, but twice a day she gets a per os (bottle) feeding. She's still spitting up a bit, but so far, she takes her bottle feedings better, spitting up less or not at all. They've started weaning her from the TPN as a result.

Tell me, which would you choose on a Friday afternoon. Work? Or this....

I know that someday Ellie will give me grey hair, I'm sure that's a long way off however.

Ellie's starting to act and look like a regular baby, look at that double chin.

Or this one. Yikes.

All in all, we couldn't be happier. We still have several milestones however. Ellie has got to get off the milranone and the TPN. She's got to move to a crib instead of a warmer. ( we may be closer to that now that she's wearing clothes. ) And she's got to gain some weight and breathe on her own.

2006-04-13T22:40:00.000-06:00

I am a happy Mommy today. Not only did I get to bottle feed my baby HOORAY! But she stayed awake and played like a regular healthy baby for about 20 minutes afterward. The physical therapist (Debbie) came by and coached me on bottle feeding Ellie, and then showed me things to do with her to build up her strength. Chad got to feed her tonight and he was happy about it too.

I talked to another cardiologist today. Her name is Dr. Everett. She told me that cardiology doesn't want to change anything with Ellie right now. She is showing more improvement, and they don't want to mess with that. They are going to keep her on the milrinone so she doesn't lose any ground that she has gained, and they just want her to keep growing and focus on her feedings to get her off the TPN line. Then they're hoping that will improve her liver function.

I forgot the camera today, so I'll just have to look up some pictures that we haven't posted yet. Ellie is having longer awake times, so I'll try to take a video of her tomorrow.

I'm bored

Drama Queen

I can too stay awake!

Big Girl

2006-04-12T22:21:00.000-06:00

Ellie ate from a bottle today! The physical therapist fed her about 20 cc's in 12 minutes. Ellie got tired on the last 5 cc's, so the PT didn't push her. She did so well, that she gets to eat from a bottle twice a day, 25 cc's a feeding. But only if she wants to. They don't want to wear her out and burn up too many calories (she needs them to grow). The other feedings she will still get through her feeding tube.

Endocronology came and looked at Ellie today and prescribed some steroids to help bring her TSH count up. Her thyroid hormone count is down (typical in heart babies) so the endocronologist wants to get a jump on treatment before it becomes a problem.

Ellie also got her eyes checked today. There are some eye diseases/problems common in heart babies, but she got a clean bill of health from the eye guy. Nothing showed up bad in her eyes. She just kicked a lot because she didn't like being messed with.

Our girl is getting bigger and stronger and spending more time awake. Still not a lot of time, but more than she was.

All I need now is a Teddy Bear to cuddle....

The first of many naps with Daddy rocking me and falling asleep too.

Alright Dad, enough pictures already!

Bundled to stay warm while being held.

Finally a Tuesday with good news

2006-04-11T15:03:00.000-06:00

Pretty baby

Wahooooo! Ellie's direct billi count is down from 8.4 to 6.7! She is also tolerating her 25 cc's of feedings very well. Dr. Jackson from GI saw her today (Dr. Molly is in a different area this week). He said that she is doing so well, and her liver, spleen, etc. feel good to him and her liver enzymes are down, that he doesn't think she needs to have the liver biopsy and cholangiogram. He thinks that the liver just needed the food to kick start it into working. Either way, they don't have to put my baby under and cut her open any time soon. Dr. Jackson wants to focus on getting her to GROW. (btw she is 6 pounds now!)

Ellie is exactly 5 weeks old today and it's her due date. Happy Birthday!

Hooray more pics!
I have a very strong opinion, I just can't voice it yet!

Look I'm a Tickle me Wiggle!

I don't know where the cookies are Daddy.

I want to play pirates...argh!

Mommy loves me...but only a little.

Two steps forward.

2006-04-10T22:16:00.000-06:00

Elizabeth is doing very well today. She did not have the biopsy done because the doctor wanted to take it slower and see if getting the feedings up improve her liver function. She's up to 21 cc's every 4 hours, if she keeps that up tonight they should move her to 25 cc's in the morning. A whopping 5 teaspoons, we're elated. The biopsy may still happen in the next day or two and there is a possibility that it will be percutaneous. Don't ask me, I was told that she needed a gall bladder to do a percutaneous cholangiogram and liver biopsy. But things change, and its hard to communicate everything I suppose. [sigh]

Remember the nasal cannula? Well, its back. It seems that because Ellie's heart function is improving, she has a greater need for O2. So Teri got the last of the really cute pictures today before they put it on her. Unfortunately, we have no pictures today. I forgot and left the camera at the hospital. [big sigh]

New videos are available and I've uploaded more, but it is taking several days for them to show up. I've also added a permanent link on the left hand side so they're easier to find.

Mommy has bad timing

2006-04-08T23:55:00.000-06:00

When I got to the hospital today, the nurse told me that Ellie had just fallen asleep ten minutes before I got there. Before that, she had been awake for 2 hours. Then I left at 5:30 to go across the hall for 15 minutes, came back, and the nurse told me that I had just missed Ellie being awake again. The little punk. So all I got were closed eye pictures today. Daddy does much better catching her awake than I do.

Happy news on the feeding front. Ellie is tolerating 13 cc's every 4 hours with NO RESIDUALS! That means she's absorbing all the food. If she does well again with her 9:00 feeding, they will up her intake to 15 cc's every 4 hours. Hopefully, she will continue to do well with this.

She also finally broke the birthweight barrier.... It just took her a month to get it back. Ellie is just shy of 5 lbs 14 oz. She was 5 lbs 13 oz when she was born. Granted the 130 grams she gained tonight might be water retention, but we'll take what we can get :)

The buzz today is that the powers that be want to do the liver biopsy and the cholangiogram on Monday. They actually wanted to do it today, but Dr. Molly wasn't in. I'm kinda glad, because then Phyllis will be there on Monday to take Ellie down for the surgery. She knows Ellie best of anyone down there. The cardiologist agreed to the procedure if they use the anesthesiologist that works on kids who go through open heart surgery. That way it will be someone who knows how to take care of kids with heart problems.

Not a lot going on is a good thing.

2006-04-08T11:18:00.000-06:00

There is just no cuter baby than this one.

In this game, no news is good news. We are hoping for a quiet weekend.

They are still varying her feedings, doing things like giving her 8cc's, if she tolerates that, then 8 more and increasing to 10 2x (4 hrs later) if she tolerates that.

Because her heart function is UP FROM CRITICAL TO MODERATE (sounds better in words than 17% and 40%) they are thinking of doing the cholangiogram and biopsy, possibly next week. Gastrointestinal Specialist Molly O'Gorman (nice title/name) will make that call on Monday.

I'm posting more videos everyday but it takes a while for them to publish.

Also, thanks to all of Ellie's CaseData friends that got her these cute bunny slippers. She likes warm feet, and it makes it much easier to grab her toes when her feet are the size of her head ;)

Tuesday bad, Thursday good

2006-04-06T14:45:00.000-06:00

We get most of our bad news on Tuesdays. I think that this is because shift change happens on Monday, everyone sees our little girl for the first time and freaks out at her numbers. By Thursday however, those doctors have done tests and can see improvements from the previous week. Well, knowing is half the battle.

Lets take today for instance. Shortening fraction up from 12.5% to 17%! Ejection fraction up from 30% to 40%!

More good news. Video is working!

Ellie with the hiccups is the first video to be uploaded. But you might try searching to find more as they come available. I'm also back-filling some videos as well.

Feedings are still a big, big issue. They are trying different things to see what they can get down her. Right now they have started giving her feedings every 6 hours. So we'll see how that goes.

Oh, the gall!

2006-04-05T22:58:00.000-06:00

When I was growing up in the 80's, there was some movement where teachers and church leaders would get a group of teens in a circle and make them each tell one unique thing about themselves. I must have played this game a dozen times. I cant say that I ever enjoyed this game, nor do I think that it helped me feel "unique" or "special" like the teachers thought it might.

I often think back to this game because of the stress that it caused and wonder what my children will say when their teachers, who have learned nothing over the last 30 years, ask them the same question.

Ellie will have it easy. "I was born without a gall bladder" she will say, and same stunned and curious noises that followed the boy who was born with his ears pierced will follow my Ellie's statement.

At the present time, however, it limits Ellie's doctors in the type of treatment she can get. She is being fed progestimil exclusively now at 4 cc's an hour in a continuous drip. The hyperal or TPN that she is being given is damaging her liver, or will if left on it long enough, so she needs to get her feedings up.

She looks cute as ever, despite being so sick.

You might try out the videos I have of her as well, they're pretty big though. Update - 4/6/6: Videos dont work, but I've found a solution that will. More on this later.

Happy Birthday

2006-04-05T15:08:00.000-06:00

Today was supposed to be Ellie's actual birthday. We were going to have her started today so her birthday would be 4/5/6. It was Wendy's idea originally, so credit where it's due, but it was a good one. It's too bad it didn't work out, but we are glad to have the little squeak with us.

Catch 22

2006-04-04T23:02:00.000-06:00

Well, we talked with the gastroenterologist today and I'm afraid we have more questions than answers.

1.) Does Ellie have a gall bladder?

While we were told that the HIDA scan would find this, we were misled. The HIDA is taken up into the liver through the blood, then excreted out of the bile ducts and does not pass through the gall bladder. The good news is that she does have bile ducts.

2.) Does Ellie have biliary atresia?

They would determine this through 1 of 2 ways.
a.) Percutaneous Cholangiogram - This is the LEAST invasive procedure and would give us the information we need, EXCEPT in this procedure they inject dye into the gall bladder and being as Ellie has no known gall bladder, we're stuck.

b.) Open cholangiogram and liver biopsy - This involves surgery and Ellie's little heart may not be able to take the surgery, so we're stuck.

So, the GI Specialist (GI Molly), did the equivalent of dropping back 10 yards and punting.

She suggested:

1) We do another ultrasound to try to find the gall bladder. This will probably be done tomorrow.

2) Start her on actigall, a medication to help protect the liver and possibly lower the bilirubin count. By her own admission however, she didn't think that actigall was going to do much if at all.

3) With the help of Dr. Beechy, that they should give her a continuous drip of milk and Pregestimil® at 2 cc's an hour. This is the same amount of food she's been getting, just continuously. It is given in an effort to help her system digest a bit easier. The pregestimil also absorbs a bit easier to help her gain weight.

4) Ordering a sweat chloride test to be done to rule out cystic fibrosis. Phyllis doesn't think we'll be able to get anything from this. She's usually right.

I remember being overwhelmed by all the information we received about the heart. How it worked and all the problems that could occur. It took us several days to process that information. The liver is just as complicated and just as essential to the body and just as many problems can occur. I'm still swimming.

So, while we process this information, lets look at my cute little girl.

She loves the disco ball.

She loves to hold her ear. Always, when she's asleep she tries to grab for it, most of the time pulling at the feeding tube in her nose.
Teri got her some new socks. They fit the length of her feet, but had to be taped around her skinny little legs so they'd stay on.

What a pose.
Stop!, in the naaaame of love, before you breeeaaaak my heart. Think it owowver, think it owowver.

Now, I need to make sure that everyone is aware. These pictures are very misleading. Ellie sleeps 22 to 23 hours a day. All these pictures (and about 50 more I didn't upload) were taken in the 10 minutes she was awake while I was there. Most of the others are asleep or groggy or possibly blurry or overexposed.

Oh, I almost forgot. Ellie was born at 17 inches. She is now at 19 and one half inches!!!!! Unfortunatly, she's not gained any more weight to justify those 2 and a half inches. Crazy little weed of a girl. ;)

Phyllis

2006-04-03T22:44:00.000-06:00

I would like to start this post by first apologizing to all of you that frequently check for updates on Ellie. Its been a bit of a hectic schedule, so we've not been able to post pictures. We've taken fewer pictures as well, so finding good ones is harder.

I would like to also thank all those that have prayed, shown support and helped our little Ellie get better.

Phyllis is one of these people. She is quite possibly the best nurse in Primary Children's NICU and everyone knows it. There is no shortage of praise for this woman, we hear if from all the other nurses, but she takes it all in stride. She's worked at Primary's for 28 years and her experience is keeping my little Elizabeth alive. I am grateful.

(Phyllis brought in a disco ball for her to look at ;)

Phyllis made Teri very excited today telling her that she can bring in a little Easter outfit for Ellie and take pictures. (we'll be sure to get those up ;)

Ellie had a HIDA scan today. This is the test where they try to determine what is going on with her liver and gall bladder. She didn't pass the fluid very fast however, and they are going to have to do another scan tomorrow. She wont have to have any more hydroxy iminodiacetic acid (HIDA) however.

Her liver and gall bladder are the primary concern of late. She is still very jaundice, she has an unconjugated biliruben count of 8. The phenobarbital hasn't kicked in yet. And it seems her liver is not breaking down the digoxin as quickly as it should, so she cant be given any more doses. The cardiologist has suggested another medication, but we'll have more on that when its administered.

In other changes, they have started her on hydrocortizone to help her lungs, I haven't asked why just yet, but hydrocortizone is frequently used in preemies to help their lungs develop.

The good news on her heart is that its not getting any worse, her echo today showed numbers similar to those last week. Progress is usually very slow, so we are patient.

Thank you all for your patience (more pictures soon ;))

While you are waiting, you can remember the cute ones gone by.

Epilepsy in animals.

2006-04-02T10:07:00.000-06:00

The hostible (alex video) is a wonderful place, and they take great care of my daughter. I think however, that not everyone is in accord. They take great care and time to be sure to pass on information that they've learned from shift to shift, but I'm sure that things get lost. This seems to lead to a moderate panic in some of the nurses. Maybe panic is not the right word, paranoia maybe. I spoke with the NNP last night and she wasn't concerned at ALL about necrotizing entercolitis. She was concerned about the lack of gall bladder, she even found a paper online that talked about a case of a child with cardiovascular problems that was born without a gall bladder. However, she cautioned about freaking out about it until we know more.

She is off her milranone. Wahoo.

She has been started on phenobarbital to bring down her conjugated bilirubin which was at 7.4 last night, very high.

Phenobarbital, its not just for epileptic cats anymore!

A rollercoaster is supposed to be fun.

2006-03-31T16:25:00.000-07:00

Ellie is not keeping her feedings down very well. She threw up last night and again this morning. The doctors are concerned with the possibility of necrotizing entercolitis aka NEC. The jist of this disease is that parts of the intestine die because of lack of blood flow.

She lost a bit of weight last night, she's at 2430 grams. (5.3 lbs).

Her direct bilirubin count is up a bit as well.

The big news though is that they couldn't find a gall bladder in the ultrasound that she had today. We think that her gall bladder is just shy, but we'll know more on Monday when they do another test. They'll inject her liver with a dye and watch where it goes.

The good news is that its not her heart that is the direct problem. If she was born without a gall bladder, then what can we do. I suspect however its simply because not enough blood is getting to the organ so it has a hard time doing its job. (btw, the gall bladder produces bile to help you digest, hence the issue with the feedings)

Not Crisco™

2006-03-30T12:49:00.000-07:00

Ellie had a new echo today and performed beautifully. She has been doing so well that the doctors assumed that her heart would show an improvement and she didn't let them down.

Her shortening fraction is up from 9% to 12.5% (30% is normal) and her ejection fraction is up from 20% to 30%(55-65% is normal)!!!!

So we're still a little less than half of normal left heart function, but we'll take improvement where we can get it!

I spoke last night with the genetics team, evidently there was some concern that her lack of improvement was chromosomal. Based on today's results however, their suggestion is that it is probably NOT genetic.

In other news, her feedings are up to 9 cc's every three hours. I dont know if we've reported this very well, but she initially started at 1 cc and progressed up to 17 cc's. When she got to 17 she had trouble keeping it down and there was a concern of an infection so they started her over at 3 cc's and have been working up from there. They are also keeping her hyperal up in an effort to help her gain weight. She is currently 2470 grams.

Happy baby

2006-03-29T21:35:00.000-07:00

Good news today, Ellie is completely off the dopamine AND the CPAP (nasal canula). Woo HOO! They're leaving the little sticky things on her cheeks that hold the air tube on just in case they need to put her back on oxygen, but right now, SHE IS BREATHING ON HER OWN!!!!!

Our Ellie is also up to 12 cc's of breastmilk, but still not gaining weight. The cardiologist was pretty happy with how she looks today, but we'll know more tomorrow with the next echo. I'm really praying they don't get another "no change." She looks too good to be not improving.

Mommy stayed home so the carpet layer could come and do Ellie's new room, so Daddy got to play with the baby and get more really cute pictures.

Hey, what are you doing?

Do you really think I don't see you?

Oh, you want me to be in the pictures?

Makeup! I need makeup!

I wonder if I'm too young for nail polish?

I've almost got the pouty lip down.

Do they think I can work without an agent?!

I'm ready for my closeup, Mr. DeMille.

Short Day

2006-03-28T20:36:00.000-07:00

I went to see Ellie today after dropping Chad off at work. I'm just at the tail end of my cold, so I masked and gloved to go in and see her. Her arterial line fell out last night and the Doctor isn't planning on putting in another one right now. Ellie's nurse put little pink socks on her today, it was a great surprise. She almost looked like a regular baby...unless you count all the tubes and wires.

Ellie is now completely off the dopamine and her heart rate is staying steady. She is also on a lower dose of the milrinone. She looked nice and pink again today, but maybe it was just the glow off her bright pink socks. She is also up to 9 cc's of breastmilk. They're upping the amounts in feedings slower this time as she is still on the antibiotics and because they are trying to get more calories in her through the picc line so she can gain some weight. (She's at 5 lbs 2 oz as of last night).

My turn

2006-03-27T22:30:00.000-07:00

I spent a lot of time with Ellie yesterday. I even got to hold her. (Wow, I have a big head)

Not much has changed today, so I thought I'd spend some time uploading pics of ellie's different moods.

First, Drugged.

Smiley:

Sad:

Happy:

Bored:

Tired: (is it me or does she look like Grandpa Bob here?)

Weary of the paparazzi:

Cute:

Hungry:

And never forget.... Drugged:
Not to be out done, I have silly. Performed by Harrison and Alex (and Drake and Trudy)

This is Spinal Tap

2006-03-26T13:02:00.000-07:00

Our little Ellie had her first spinal tap, or lumbar puncture. The concern was that because she had a bacterial infection, it may have gotten into her spinal fluid and subsequently into her brain. This would cause meningitis. Before the tap she was looking very good, bright eyed and very responsive. Sorry, no pictures of this because my camera has bitten the dust. She's sleeping now and seems to have handled her brain fluid being drained very well. ;)

Results of the LP came back and there was no evidence of anything other than cute.

Faith

2006-03-26T00:00:00.000-07:00

Trust Him when grave doubts asail thee,
Trust Him when thy strength is small,
Trust Him when to simply trust Him...
Is the hardest thing of all.

I think one of the hardest things about this situation is handing the fate of my daughter over to Heavenly Father and not trying to take it back from Him. He has a plan and I need to have the faith that He is in control. It's difficult to do because this trial is big and scary and it's easy to get swallowed up in the enormity and stress of what's going on. I feel so blessed to have this beautiful girl in our family and so afraid for what she's got ahead of her. I know that Heavenly Father is with her and watching over her. She has angels by her bedside to comfort her. She has such a precious and beautiful spirit and I wouldn't trade her for anything.

Thank you all again for your prayers for our family.

Its been a tough week.

2006-03-25T20:14:00.000-07:00

Ellie's infection seems to be a gram-positive bacteria, probably a staph infection. They've put her on 2 antibiotics, Vancomycin and Gentamicin. They are also weaning her dopamine and melanone. This has brought her blood pressure down quite a bit. They are starting her on another medication for her heart called digoxin. This should slow her heart rate and strengthen her heart. This has some unpleasant side affects however. Her heart rate has been at about 175 - 195 bpm, once they took off the dopamine and melanone it calmed to around 150. It really doesn't matter what her heart rate is, whenever we ask the doctor or nurse about it they say "Oh, that's good" or "that's within a normal range". [sigh] Oh, btw, she currently weighs 5 lbs and 2 oz.

On a happier note, I have pictures! I am mostly motivated to put pictures up here so Tara wont give me a bad time at work on Monday. But I also like to show off my cute little girl.

You can see the arterial line is in her right foot now instead of her left. The pulse in that foot is so weak that they have to do intermittent blood pressure checks with the cuff on her right arm.

Oh, I'm worried for when she grows up.

She likes my finger a lot better than that pacifier.

But she likes the mouth swab better than both of them. (They're mint flavored)

Her little right hand is getting a lot better. You can also see here that she has Teri's wrinkled hands.

Here's the top, the band aid is where they removed the most recent IV.

Here's another cute one. You can see her dark, dark eyes very well. I have been surprised by how dark her eyes are. I thought all babies were supposed to be born with blue eyes. Not mine.

Sick baby

2006-03-24T09:20:00.000-07:00

Chad went to see Ellie again last night after work, and thought she was looking better. However, when I talked to Dr. Beachy at 11:30 before I went to bed, she said that Ellie was looking peaky. She also told me that she was concerned that if Ellie's heart gave out, she wouldn't have enough strength to come back from it. Not what the mother wants to hear, but she felt that I should know.

Ellie's arterial line fell out of her left heel last night, so they had to put a new one in her other foot. They use that to draw blood from so they don't have to continuously poke her. Her blood pressure on the right side isn't as strong as the left because the right is where they did her heart catheter through the femeral artery.

Dr. Beachy called me this morning at about 8:30 to tell me that Ellie's blood culture came back positive for infection. They actually started her on antibiotics last night just in case. They may have to put another piccline in for the antibiotics if she doesn't start improving in the next 24 hours. They are also doing another echocardiogram today to look for tiny blood clots that can get infected.

I'm trying not to panic that I got her sick. There is no proof that I did or didn't, but everyone at the hospital says I can't blame myself. I need to focus on getting better so I can get back down there and be with my baby. I can't stand it that I'm not there again today. Chad is going down again later today and will give our girl another blessing.

2006-03-23T05:28:00.000-07:00

Ellie had a rough day on Wednesday. She was been breathing harder and her temperature was still going up and down. I was worried because I came down with a sore throat Wed morning and was scared that I exposed her to something the day before. They have tested her 3 times for bacterial infections, but they have all come back negative (whew). I kept calling the hospital throughout the day, going crazy not being there.

I finally got most of the info around 5:30. Ellie got her echocardiogram and chest x-ray a day early, because cardiology wanted to make sure her heart was doing ok. Her PDA has opened back up a little bit, which means she's dealing with some pulmonary hypotension. Her heart is still very big and hasn't shrunk at all. Mostly, we got the "no change" senario again. She is a little acidodic again but not bad.

The nurse told me that they may decide to put Ellie back on the respirator for a couple of days to give her a rest. She has been working really hard to breath on her own, and it's wearing her out. She has been pretty lethargic rather than her perky self.

I talked to the Nurse Practitioner at 11:30 last night to check on Elizabeth before I went to bed. The NP told me Ellie had thrown up, so they emptied the rest of her stomach out and stopped her feedings for a while. After that, Ellie rested a lot easier, so they might start her feedings again in the morning if she acts hungry. They are upping her calories through her IV's because she is burning so much more energy than she was before. (This is from breathing on her own.)

It just about drove me beserk staying home today, but I didn't want to risk sharing germs with my girl. Chad went to see her after work and was pretty positive about how she was doing. I don't know how parents do this kind of thing for months on end. I hate not knowing what's going to happen and how long it will take my baby to get well enough to come home. I certainly don't want her coming home until she can, but not having a definite time frame to give an end in sight is really hard for me. Yes, I am the president of Control Freaks Anonymous...how did you know?

Brothers and babies and breastfeeding

2006-03-21T23:15:00.000-07:00

We had a very perky girl today. We didn't get to visit very long, but I did get to hold her and we "practiced" breastfeeding. The medical term is "non nutritive." I pump to empty out and then try to get the baby interested. They (as in the medical powers that be) don't want her eating from me yet because they need to monitor her intake very closely. However, they do want her to start getting used to the idea and the process so that she can start doing it when they give the green light. Ellie actually did very well according to the lactation specialist. Ellie was very alert and kept looking at me and wiggling around. When Chad came in and spoke, she turned toward his voice and wiggled some more. I think she knows who we are :D.

The NICU at Primary's has a neat activity each week called "Sibling Hour" for all the brothers and sisters of the babies staying in the NICU. We took Harrison and Alex down to participate in that today. It was really good for them because they got to have a lot of things explained to them on a level they can understand. The nurse that was teaching them had a binder with 8x10 pictures of the hospital, the NICU, beds the babies sleep in, etc, so the kids could see where their babies were. They also had a bed just like the one Ellie is in right now that had a plastic baby in it and they showed the kids all the neat things the bed does and what the monitors on the babies do. Then they had cloth dolls the kids got to draw faces on with markers and dress in little hospital gowns. The boys also decorated little cardboard boxes with stickers and markers to keep things in like syringes (no needles obviously!), toothbrushes, monitor stickers, and polaroid pics of Ellie that the nurses took. The boys seemed to have fun, although they were still sad they didn't get to see their baby sister. Alex said he liked the "hostibal". They're both troopers and have been very good helpers.

PDA update

2006-03-20T23:55:00.000-07:00

Today was a pretty good day. Elizabeth had her echocardiogram before I got there, so I was able to get the update on her when they did rounds. Her PDA is completely closed now, and she is staying stable. The doctors are encouraged that she is doing as well as she is. Her heart still isn't improving very fast, but they are still hoping that she will continue to slowly improve. She is now getting 12 cc's (almost half an ounce) of breastmilk through her feeding tube, and when I go in tomorrow I get to work with her on learning how to latch on.

I got to hold my baby TWICE today. The first time for 45 minutes, the second time for a little over an hour. It was so nice to get to hold her and rock her. She is such a sweetheart!

One thing the nurse was concerned about today was that Ellie's temperature kept fluctuating. If she gets too warm, her heart rate goes up, which is bad for her heart.

2006-03-19T19:48:00.000-07:00

This is the CUTEST BABY!
Mom thinks so.
You can see that her face is still quite jaundice because the lights never got to it. That should go away over the next day or two. The tube she still has in her mouth is a feeding tube. She's now up to 6cc's of milk every 3 hours. (6cc's is just over a tablespoon)

Extubation jubilation

2006-03-19T11:05:00.000-07:00

She's been Extubated!!!!! (no more breathing tube)

She has a small CPAP tube in her nose and is on 100% O2 but we are elated that we finally get to see her face. (you'll have to wait till tonight though ;))

Pictures to follow.

Hooray for real food!

2006-03-18T23:01:00.000-07:00

Today it was my turn to spend the day at the hospital. Ellie was just waking up when I got there, so the nurse took the billi spotlight off her for a little while so I could have some mommy /baby face time. My sweet girl opened her eyes and looked at me while I talked to her. I also read Winnie the Pooh to her and showed her the pictures. She tried to throw a fit when I took the book away. She really likes being read to.

They decided that since Elizabeth was doing so well taking 1 cc of breastmilk every three hours, they increased it to 3 cc's every three hours. She is doing GREAT with it, and her little insides seem to be working the way they should.

I got to talk to the neonatologist (Dr. Chan is our main one, but this is the weekend) and she said that they are taking very small steps with our baby. They change one thing at a time, and let her become stable, and then do something else and let her become stable. She told me that we might be doing this for a long time. I told her I had no problem taking all the time we needed...it beats the news we got Tuesday where the cardiologist we talked to was saying, "If we're going to do surgery, it will have to be before Friday." Not to mention how risky the surgery would have been, even if Ellie was a good canditate for it.

Ellie is doing much better tolerating her situation. She doesn't have to be sedated nearly so often, which is good. We have to be careful however that she doesn't get too excited because then her heart rate and blood pressure go up and it works her heart too hard. She was doing that today, and it took the nurse (and I) a while to calm her down. I think the thing that set her off was a messy diaper. That girl does NOT like to be dirty or wet. The respiratory therapist has also weaned her down to 22 breaths per minute from the respirator. This is down from the 36 she was on Thursday. Again, gradual but positive steps in the right direction.

One adorable thing she did today was sneeze. The weird part was you couldn't hear it because of the tube in her throat. It was hilarious to watch this tiny person screw up her face and see the sneeze but get no sound. She just looked at me afterward as if to ask what just happened to her. I wish I had gotten it on video.

Notes from Mommy

2006-03-17T22:52:00.000-07:00

I have been living in such a daze the past couple of weeks, I haven't been able to clear my head enough to add comments to this page. It has been such an emotional roller coaster that I feel pretty drained.

Today is the first day I didn't go see Elizabeth. Alex was sick and really needed some time with mommy. Both he and Harrison have been real troopers through this and I'm very proud of them. It was hard to not go to the hospital, but the boys need to get back to some feeling of a normal routine in their lives. I don't know what I would have done without the love and support of friends and family that have taken care of my boys, brought in meals, covered for me in my church calling, done my laundry, painted the baby's room, assisted in blessing Ellie, and just remembering us in their prayers. Thank you all for all your love and support, it has made a HUGE difference!

It's been 15 days since this whirlwind started, and I am still living one day at a time. I can't really plan ahead very well, because all I can cope with is what's going on each day as I'm living it. This is a very hard thing for a control freak like me. I have had my world turned upside down and backwards and I don't do well with that. I have had to turn my baby's life over to my Heavenly Father and have the faith that He will take care of her and that he know's what is best for her and our family.

Watching Ellie struggle has been hard, but I have also seen that she is a fighter and won't give up easily...which should make for some pretty interesting mother/daughter talks when she gets bigger. Hee hee hee. One of her nurses told me yesterday that Ellie has a bit of a temper and lets her nurse know when she needs something. It's been really fun to see a personality in such a tiny person. She was responding pretty dramatically last night before Chad and I left for the evening. One of us would start talking and she would wiggle like crazy, trying to get close to us or communicate in some way with us. Then she would calm down, one of us would start talking again, and then she would start going nuts again.

It just about kills me that I can't pick up my girl whenever I want to. I want to cuddle and kiss and comfort her in her pain. I felt like I was going to explode with pain the night I checked out of the hospital to go home and had to leave her at Primary Children's. I cried most of the way home. I know she is in one of the best children's hospitals in the country and is getting the best care, but I miss not being with her and being the one to take care of her. The night after she was born, I woke up at 4:00 in the morning and decided I couldn't stand it and that I was going to go see my baby. So I got up, walked out to the nurses' station and announced that that was exactly what I was going to do. They were a bit surprised that I was choosing that time of day, and I think Chad thought I was crazy, but I went. I was so glad that I did, because when I got there, her nurse told me she was getting ready to give her a bath, and asked me if I wanted to help. I couldn't hold my baby and I couldn't nurse her, but I did get to give her her first bath. That meant a lot.

The boys don't get to see Elizabeth yet because it is still RSV season, and no one under the age of 14 (including siblings) can get in to see the babies until the middle of April. I'm really hoping she's not still in there then. We've had to come up with other ways to involve our kids in her life. Chad has taken pictures and videos of her and shown them to the boys, which has made her real to them. They have also each drawn Ellie a picture and both of them are taped above her bed. I gave both boys a small acrylic shamrock today from Ellie for good luck. They have been very sweet and remember her in their prayers. Alex has heard us talking about who Ellie looks like and that she has my hands and feet, Alex's head shape, etc. Today he asked me if Ellie had his tummy. I got a giggle out of that.

I

Mothers milk

2006-03-17T12:48:00.000-07:00

A few changes today. The first and biggest is that she'll be receiving 1cc of mama's milk every 3 hours. The hope is that this will move through her system and flush out any meconium that is left. She is also receiving lasix, a drug that helps her pee. This will help clear up her jaundice. She's still on the lights today, her billiruben count was at 12.

Slow and steady wins the race

2006-03-16T14:57:00.000-07:00

We started the day coming in and not being able to find the cardiologist to get the results of today's echocardiogram. I was disappointed to find out that Dr. Arrington gave the echo and we didn't get to talk to him.

Some fun things happened while we were waiting though. I've been taking the nurses stethoscope lately, whenever I get the chance, and listening to her heart. It sounded a bit like a washing machine churning. Today though there was a striking difference. You could almost run a marching band by the thump of that little heart today. Her heart murmur was just about gone. It was amazing to hear.

Another fun thing. She was squirming around like crazy and I couldn't figure out why until I realized that she was rooting for my finger. She started chomping on it like crazy. I started to get worried, even though I knew my hands were clean, and we got her a little mini pacifier. Its formed to fit around her breathing tube, but it doesn't fit that well. Teri came in and was elated that she was rooting. She said it made her milk run. Well... I don't know anything about that, but it made me happy too.

[Ellie rooting pic.. maybe video?]

We finally got a hold of Dr. Ethridge. She said that the PDA has gotten a lot smaller now she's off the prostaglandin. Her ejection fraction is 20%. They've seen as high as 24% and as low as 8% on Ellie. The ejection fraction is the volume of blood that she pushes out on each beat. 55-60% is normal.

She also has an active pericardium. This has been a favorite of mine since she's been born. You can see her little heart beating through her skin just below her ribs. They thought that this might diminish as she came off the PGE's, but so far it hasn't.

[I'll try to get my active pericardium video up here]

Oh, what a difference a day makes.

2006-03-15T18:20:00.000-07:00

Wow, a lot has happened today.

We decided to take it a little slower getting down here and we decided not to call ahead of time. No reason to panic ourselves. After Dr. Arrington's advice last night it seemed like the best idea.
When we first got to the hospital Ellie was wide awake. Eyes open and squirming.

I have lots of her with her eyes open.

what's all this stuff in me?!?!

Her billiruben count was up again today. No billi blanket, but they did give her stadium lights. You can see the little mask hanging off her in the pics above. They call them sunglasses, I call them face hiders.

We soon were able to page the cardiologist, Dr. Ellington. She seemed MUCH more calm than yesterday. I was very annoyed with her because 2 days ago she said "we're taking it slow, one day at a time", then yesterday she said "AHHHH MUST DO SURGERY NOW!!AAAHHHH" (not a direct quote) and today she's back to take it slow.

I think we closed a door today. It turns out that she is not a good candidate for the Norwood procedure because her left ventricle is SO large it would get in the way. So in the cardiologist conference they had this morning they decided to take her off the prostoglandins and let her PDA close. Exactly what Dr. Arrington said last night. By going down this path we are trusting her heart to work normally. If it does not we are in very scary territory.

This put us in a much better mood however. We have faith that she wont give up. Neither will we.

They changed her bed today to, and you know what THAT means!!! We get to hold the baby!!! YEA! We got to hold her for about an half hour. Teri about 20 min, me about 10. (I wanted it that way.)

Her hematocrit (red blood cell count) was down. So they had to give her blood. You can see the IV in her head. Yea, I know.. her head?

Wow, I need to shave.

The head neonatologist on the floor is Dr. Chan. He's a very nice good natured guy. The funny thing about him is that most of the time he goes around with one eye winking. So all the nurses bust a gut when i said that Ellie "had a Dr. Chan thing going on"

Over the next 24 hours they should start to see changes in her blood pressure and responses to her PDA closing. We may have seen a few of those changes as we put her back in her bed. Her blood pressure was way up. This is a good thing, it means they can wean her from the dopamine. But after another hour it had calmed back down again, even gone very low. The nurse was very quick to calm me down about it, but she admitted to another nurse a bit later that it had her worried. They decided however that it is probably just due to the changes.

Also, another cute event. Her umbilical cord fell off. Kinda gross rather than cute, but we like all good milestones like that. hehe. And of course, I took a picture.

More options, all scary

2006-03-14T21:56:00.000-07:00

I feel like I sent Teri to the wolves today. The idea was that I would stay home and she would go see the baby. The next echocardiogram wasn't scheduled until tomorrow, so it wouldn't be too exciting, no new information. The doctors had a different plan.

They decided to do another echo today instead. The reason for this was so that she could be talked about in the cardiologists staff meeting tomorrow morning. The doctor (Dr. Eldridge)came and talked to her and told her that the heart was worse than yesterday and that she had to prepare for surgical options. She talked to Teri about the Norwood procedure, about a heart transplant, about flying to Denver to have all this done. Teri was overwhelmed.

I raced down about 6:00 pm and tried to start gathering information. Of course nothing happened fast. I got there just in time for shift change and only was able to see Ellie for about 10 min. The nurse told me what she could, but it wasn't much.

After the shift change and dinner, we went back and the night nurse got the nurse practitioner (she's the head nurse on the floor) who in turn got Dr. Cam Arrington cardiologist. I have spoken with Dr. Arrington before and I have really liked his candor and ability to explain. I think he did a good job here tonight as well.

Dr. Arrington talked about our options. There are several pathways we can take. All of which seem to have good, very logical and viable conclusions. But each one also has a negative side.

I'll try to dump what he said.
Most of this will hinge on what comes out of tomorrow's meeting.

His opinion was that probably the first step they'll take is to take her off the prostaglandin (PGE's). This will allow the PDA (patent ductus arterialis) to close and the left side of the heart to start working on its own. If it is able to work at even 10% that might be enough. (He said that the number 10% is a bit misleading because normal is 60%. So if its able to do 1/6th of normal we could be ok). They would then try to get her off the ventilation, then the dopamine and melanone. The problem arises if she has a crash they may not be able to open the PDA back up because its been too long.

Having the PDA open this long is also very dangerous. After too much exposure to oxygenated blood the lungs can be damaged as well.

Another option is a modified version of the Norwood procedure. Basically, through a series of surgeries they would re-plumb her heart so that the right side was doing all the work. Ultimately with this procedure the right side of the heart would pump blood out through the body and straight to the lungs. The Superior and Inferior Vena Cava would be connected directly to the lungs. The blood would come out of the lungs to the right side of the heart and get pumped out to the body again.

This procedure would only lengthen the amount of time we have before a heart transplant. With transplants the problem is qualifying for them. If she has lung problems because of the PDA having been open for too long, it wouldn't work. There are several criteria that need to be met in order for this to work.

So our hopes are pinned on coming off of the prostaglandin and her little heart working properly.

Cute girl, bad heart

2006-03-13T23:01:00.000-07:00

We got to the hospital today just as they were finishing reports. This is where the top 5 or so people that are over the NICU get all their information. They start at about 9:00 each morning and go from child to child. Its a very interesting time to be around because they talk very technically and openly about current and upcoming strategies for your child. They seem to be a very collaborative team.

The reason we came down however was because Ellie had another echocardiogram done today. Both Teri and I had pinned our hopes on this one. It was obvious, however, as the nurse was looking at her heart that the left ventricle was still very large and not pumping the way that it should. The nurse wouldn't tell us anything of course, so we had to wait for the doctor to come around. When she finally got there she smiled and told us that nothing had changed. We didn't smile.

We were both dazed after that news. Teri cried a bit. It slowly sunk in that we were in this for the long haul.

The doctor did say how good she was looking however. She and the nurse both agreed that they rarely see a heart baby that is so well diffused. (O2 getting around her body so well, pink toes and fingers etc.)

Another story that buoyed me up was a friend from work told me about her nephew (i think it was a nephew) that is now 3 years old and has 3 heart surgeries and is doing great. He was born with hypoplastic left heart syndrome. It is incredible what they can do. We are just working on our long term perspective.

They had to give her blood today as well, her hematocrit was low. I gathered this was because her acidosis was on the rise, but it didn't all sink in I'm afraid. I wish they didn't have to put the IV into her bad hand.

The doctor also prescribed milrinone in addition to the dopamine to help the heart beat better.

Looking Good

2006-03-13T21:41:00.000-07:00

Sun 12:
Ellie's bilirubin count went down from 12.3 to 8 today. So they took her off the lights. Jeff and Lacey came down. Everyone is saying how good she looks today. She only has her PICC line and arterial line in and the breathing tubes. So her accessories are down to a minimum.

I realized my camera was off a day. Hence the bad stamp on the photos. I get that fixed by Tuesday ;)

Teri brought stories today as well.

Her hand is looking better too. (see IV Burn for details)

Jaundice

2006-03-13T08:02:00.002-07:00

Sat 11:
All of our kids have been jaundice to a degree. With Alex it was touch and go on whether or not he'd be hospitalized. Ellie's bilirubin count went up from 10.1 yesterday to 12.3 this morning. This means that she was put on the "billi blanket" ( the nuclear blanket) and designated her own stadium lights.

Her acidosis has gone down which is very good. This means that her heart is able to pump the blood well enough to get rid of the CO2. They got it to go down by increasing her liquids. Presumably, this was able to flush out the CO2 and lower the blood PH.

Her nurse tonight did not win any awards. I came in and they were just putting her back in her bed from weighing her. She was trying to lay the baby back in her spot and for some reason the baby didn't want to go. Hmm... maybe it was because her ARM WAS BEING JERKED BEHIND HER?!?!?! Her arm had caught on the bed and she was trying to lay her on it. I saw this at once and pulled her arm out. I made some comment like "lets NOT break her arm".

To continue my annoyance with this nurse, then she's trying to get her situated and wants to turn her head ( They turn her head every 3 hrs. Nurse says its more comfortable. ) She starts lifting her head up and she's not able to get it set properly because of the PICC line in her neck, so she cranks her head up and down and all around with out supporting her neck at all. I got to the point that i had to walk away it was making me crazy to watch.

These ladies do an excellent job and I realize that I am the paranoid dad... but it doesn't make it any easier.

IV Burn

2006-03-13T08:01:00.000-07:00

The IV in Ellie's hand was taped very well, and functioning quite well until Friday night, Saturday morning, then it leaked. Because it was taped so well, Mollie (our nurse that night) couldn't see that there was a problem. Mollie is one of my favorite nurses, so I'm sorry it had to happen to her. I have posted these pictures on another site just in case you don't like little baby blood.

They did some interesting things with this lesion.
First, they put a plastic bubble-like wrap around her wrist with nitroglycerine underneath. This was to expand the blood vessels and aid in healing. They kept that on for about 6 - 8 hours so it could absorb through the skin.
Next they put the LEFT arm in a heating pack. According to the nurse, by heating one appendage the body will compensate and heat the other. Heat = Blood. It sounded like a pretty tricky way to get blood to the wound.

The good news is that it is healing quickly.

Cardiac Catheterization

2006-03-13T08:00:00.001-07:00

On Thursday the ninth Elizabeth was taken down to a large room with an absolutely enormous machine in the middle. Monitors on one wall and supplies on the others. This was the Cath Lab.

Cardiac Catheterization is a procedure where they enter an artery with a small tube, run that tube up into the heart and do something. In the case of our Elizabeth, it was to run a small balloon through the tube push the deflated balloon through her aortic valve into the left ventricle, inflate the balloon to 5mm and pull the balloon back through the aortic valve. This will cause the closed cusps of the valve to tear and hopefully allow blood to flow up the aorta without "leaking" or regurgitating back through to the ventricle.

The procedure went very well. The doctor said that he was going to try to get it to go through the umbilical first, but he was unsuccessful so they put it in the femoral artery in her leg. The doctor said that the left ventricle was not pumping as well as he'd like and is still very enlarged. He said that it usually takes time to see changes like this. So they'll do another Echo Cardiogram on Monday.

Acidosis

2006-03-13T08:00:00.000-07:00

Our doctor told us today (Friday the 10th) that metabolic acidosis is a big concern for Ellie, well for her doctors and nurses it is. The way that its been explained to me is that if the baby is given too much O2 and her heart isn't able to pump well enough to get rid of the CO2 from the blood it will lower the pH of her blood. But I could be WAY off.

To manage this currently they have increased her fluids and she's the better for it. It has made her more pink. They may have to give her drugs like blood thinners for it if that fails.

This is one of the reasons for the arterial line in her foot. They are able to take arterial blood gas measurements. But more importantly, it gives me a reason to show off her chicken legs.

Wendy

2006-03-13T00:50:00.000-07:00

It's mostly a blur, but from the moment that Ellie was born, Wendy was there. She was taking care of the boys, running two households and being a superwoman.

We are forever grateful.

Her first drugs

2006-03-13T00:26:00.001-07:00

She wasn't breathing very well when she was first born so they intubated her and put her on a respirator.

We started learning about prostaglandins and dopamine. They were the first drugs administered. Prostaglandin is used to keep her patent ductus arteriosus (PDA) open. It normally seals off soon after birth, but in Ellie's case it needs to stay open so that both the right and left sides of her heart can pump blood through the body.

Dopamine is used to make her heart pump harder, in an effort to get that left ventrical to push blood better.

Some of her first pictures

2006-03-12T22:52:00.000-07:00

We didn't have our digital camera on the first day. Life Flight provided us with a disposable camera, so as soon as we get those developed we'll post them here.

Here you can see the breathing tube in her mouth, the heart monitors on her chest, the blood-gas saturation monitor on her left hand, an IV in her right hand and right foot and the arterial line in her left foot.
They had trouble getting a PICC line into her which is why she has so many IV's. They tried twice in the belly button, but it kept going into her liver. The IV's are to feed her and give her medicine. The arterial line is to draw blood. They have to do lab analysis on her frequently so it helps to have this open pipe in her foot so they don't have to stick her a lot.

Not Fuzzy Little Moonbeam ™ anymore

2006-03-12T22:36:00.000-07:00

Its hard to get out the next few minutes, they were very difficult. The baby came out and they immediatly started cleaning her up and doing the things they do. Teri was clamering to see her and before I knew it they wisked her through the little window to the U's NICU. As the window shut I heard the nurse say "oh, she just started crying". That hit me particularly hard, I didnt hear her cry and still havent to this day. Teri was crying, sad because they had taken her baby away. As i leaned over to comfort her she said "Can we call her Elizabeth? Elizabeth means 'precious gift of God'". Of course we can call her Elizabeth.

About an hour later (an eternity in mom missing baby time) the Life Flight team came into the room with little Elizabeth on a 6 foot long 5 foot high cart. Teri got to hold Elizabeth's hand and see her a bit. They had intebated her almost immediatly upon being born because she wasnt breathing that well. And we started on my first trek into Primary Childrens.

Delivery

2006-03-12T22:27:00.000-07:00

It is amazing to me how well Teri's body works when it comes to delivering a baby. She is so efficient.
1:00 Started on Pitocin. @ 1cm
2:30 @3cm
3:15 Broke her "bag of water" @4+cm
4:05 @8cm
4:20 @+2cm (12)
4:30 Delivered

Mid point in the delivery, Dr. Andres came in with about 3 other doctors who did all the dirty work. He made a comment about how quickly things had gone and i said "ya, we've delivered TWO of Teri's babies." He smiled, then it looked like it turned into a bit of a grimace as he realized my reference.

Sandy

2006-03-12T12:38:00.000-07:00

Teri was checked into the U Hospital. My dad and mom were very pleased. Mom because we were so close to Primary's, dad because we were in his territory.

Once Teri was checked in, she found a kindred spirit in Sandy, her nurse. Sandy is really a credit to the hospital. She was able not only to take complete care of Teri, but had a bedside manner that really put Teri at ease. It was nice to have someone believe Teri when she said she delivers fast and wanted an epidural soon. I was out making calls to everyone when the epidural was put in, but Sandy had Teri laughing so hard it wasn't difficult for her to get a 10 inch needle stuck in her back. They identified with each other on their dislike of chocolate and need for a lemon filled jelly doughnut. She was also sweet enough to follow up with us after the delivery.

Sandy made me laugh because she kept refering to the time when they are going to "break her bag of water". She said that fast so it came out like "bagawater" she must have said it a hundred times.

Dr. Putanesca

2006-03-12T12:34:00.000-07:00

When we got in to our appointment, we first had one of Dr. Putanesca's nurses do an ultrasound on Teri. She had all the bedside manner of a mime. Lots of wiggling, but no sound. I tried to get her to tell me what she was doing but she kept telling me that only the doctor could diagnose. Finally we met with the doctor. He was the first person that we'd met with that was able to put together the whole picture.

Above is a normal heart (just more colorful). Blood comes from the body into the right atrium and is pumped into the right ventricle then out to the lungs through the pulmonary artery. Oxygenated blood then comes back from the lungs in the pulmonary veins and into the left atrium and pumped into the left ventricle. All this works fine on little Ellie. The problem comes when the left ventricle wants to push the blood out of the aorta to the body. In essence, her aortic valve is plugged up. This caused the left ventricle to swell to 3 or 4 times its normal size. It was this enlarged ventricle that became easy to see on Dr. Healy's ultrasound.

Dr. Puchalski told us that if left unchecked, the baby's heart would only get worse. EFE would increase along the ventricle wall and there would be a danger of hypoplasic left heart syndrome which basically means that the left half of her heart would shrink, become thicker, and be unable to pump blood through the body.

His recommendation? Deliver today.

DISCLAIMER

2006-03-12T12:30:00.000-07:00

Just want to make sure that everyone is aware. These thoughts are my own, they are based purely on my own understanding and have not been reviewed by a doctor. I am not trained in any way in medicine and my comments should be taken as such. If you have any corrections or different understandings please post so we can all learn a bit more.

The Weekend

2006-03-12T12:23:00.000-07:00

We left the hospital and went home. Teri recalled feeling like it wasn't real. The next few days were a blur. We worked to get an appointment with Dr. Puchalski ( we called him Dr. Putanesca like the sauce from Lemony Snicket ). Dr. Andres' office dropped the ball on Friday so we weren't able to secure an appointment.

It wasn't until late Saturday, early Sunday that I felt like I was able to start studying and trying to figure out what Aortic Stenosis was all about. But I think I'll wait a bit to describe all I learned.

Monday morning Dr. Andres' office got their act together, we got our appointment for early Tuesday morning and, thinking that we were going to take the baby full term, I went to work. At work everyone freaked out of course, I came in only minutes after Robert had told everyone that he didn't know if I would be in or not. Lynn came out the door of the resource meeting and groveled and bowed to me grateful I was there. I guess its just nice to be wanted.

Tuesday morning the 7th we got up very early. Harrison went to Janna's early, Alex had gone over to Wendy's the night before. (bless both these ladies, i don't know what we would do without friends like these.)