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

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!

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

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" !

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

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

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!

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

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

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

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!


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