Do you know what days of unexplained fevers get you?

At least for Gracie, we got admitted to Primary's for tests and observation. Gracie has had diarrhea for 9 days straight (finally stopped yesterday) and five days of fevers ranging anywhere from 100-103.

It has been a long day and we are just getting settled into our room, so I should sleep while Grace is sleeping. I'll post more details about how we finally ended up here tomorrow if time allows.

Not a baby anymore

For the longest time I have been wanting to post about my other sweet girl--Morgan, but I got carried away posting about Gracie's birthday celebrations.

Morgan has grown up so fast since Grace was born last summer, she went from this

to this

I wish I had the time to share all of her cute little phrases and things that she does, but here are a few of the things that have happened this week.

-Morgan still wakes up in the middle of the night and gets into bed with us only to be taken back to her bed. Last night she got into bed with us and when I took her back to her bed I noticed that she had put her shoes on her feet before coming in (when I went to bed her shoes were on her bedroom floor) I laughed so hard I was lucky I went back to sleep.

-Yesterday we called her grandma to see if Morgan could go over and play, when grandma said yes and we were heading out the door, she said, "My grandma is amazing, that's why she is my gammy."

-When we are in the car driving, she is already a backseat driver---she'll tell me to slow down when the light turns yellow or to stop if the light is red. Today she even told grandma as they were pulling away that she needed to put her seat belt on.

-The other day she was doing something she shouldn't have been doing and she knew it, just as Jason was getting ready to say something to her, she looked at him and said, "Daddy, don't get mad, be happy!"

Morgan loves playing mommy with her babies and loves cooking with mommy. Morgan loves to cuddle, especially when she gets a cup of milk, she'll even sit next to Grace and hold her hand. She knows way too much about medical things and always talks about being a nurse or doctor. Morgan loves her cousins and is very excited for her "favorite Aunt Kat's" twins to be born. Morgan loves other kids and loves playing with them, I think she will be the type to go up to those kids that are alone and be their friend. I could go on, but I think you get the idea---I think Morgan is amazing.

Morgan has blessed our family in ways that can't even be explained. I truly believe that if it wasn't for my sweet girl, we wouldn't have been able to make it through the last couple of years. Morgan we love you and are so glad that you are our baby, oops, big girl! Gracie is so lucky to have you as a big sister.

Last night as we were getting ready for bed, I asked Jason if he wanted to sing to Grace or if I should. Morgan wanted to do it---this is a replay of what happened.

A couple weeks ago I was getting the girls ready for their bath, I undressed Gracie and put her on the floor and heard Morgan changing her diaper, luckily my camera was close by.

More birthday fun

We went up to Mutual Dell on Thursday to celebrate Gracie's birthday with family. It was so great, Gracie loves to be outside and watch the leaves in the trees and just be with family. The video above is a little long and loud, but I knew my sister would want to see it. (the video won't post, but I'll keep trying.)

I still can't believe that it has been a whole year...tonight I was rocking Gracie before bed and realized that she had her first open heart surgery a year ago today. I started crying and looked at Gracie who was staring into my eyes just smiling. She truly is my hero, my inspiration, my motivation to endure and persevere despite what may happen.

Its interesting how you can get so preoccupied with life that I almost forget Gracie is so frail and really could end up in the hospital without any notice. Though anyone could be gone in a blink of an eye, with these sick little heart babies you never know and I think that there is always a fear that they won't make it to see all their major milestones. I guess all I can do is enjoy each day and do my part to keep Gracie healthy and limit the extra stress that is placed on her heart.

On a different note, we had our first Hope Kids outing (a support group for children with terminal or life-threatening illnesses and their families) today. We went to an old-fashion family picnic on Antelope Island. Jason had to work so just the girls and I went and we had fun. Morgan made a cute little friend who is actually another heart kiddo, it was so fun seeing those two play. They walked around holding hands, played 'ring around the rosie,' and shared various snacks---this made me happy on so many different levels, but perhaps the biggest was that it gave me hope, hope that the day will come that Morgan and Gracie will be able to run around and play.

It was so nice to see other families out with their little hope kids (kids with cancer, various transplants, heart defects, etc.) playing and having fun. Life is hard and it is difficult at times to get these little kiddos out but how fortunate we are for a great organization that provides outings.

What we did today

Today has been a great day. Gracie has been happy and just a sweetheart all day long, we had coupons for a free breakfast at Mimi's restaurant so we went out as a family for breakfast. Then before heading up to Primary Children's we had to make a stop at home---Gracie loves chewing on her oxygen cords and well she finally wore it down and made a hole in her tubing so we had to get a new nasal cannula.

You may be wondering why we went up to Primary's, (especially since she has to go back tomorrow to the OR for a sedated hearing test, RTU won't touch her because of her history) well I wanted to share this special day with our 'extended family' up at Primary's. So I made these cute little birthday announcements, wrote individual notes for our favorite nurses, doctors, and surgeons and ordered some delicious gourmet cupcakes (thanks Melanie @ Just Cupcakes) to share.

It was fun to see so many familiar faces in a non-sick, non-surgical setting and honestly I think that those we got to see loved seeing Gracie---healthy and full of smiles.

This may sound funny, but Jason and I really think that Gracie recognized those that we saw---she couldn't quit smiling or talking to them. The best was watching her interact with Dr. Witte (one of the Attendings in the PICU) and her surgeon, Dr. Kouretas. We didn't get to see many of our nurses, really just Carolyn, others were off or work nights, but hopefully they will enjoy their goodies.

We don't know what other fun things today holds for us, just enjoying being together and all being relatively healthy is enough for us. Birthday celebrations continue on Thursday with a family picnic in the canyons where Grace gets to destroy her own little cake along side her cousin, Cade who is only three weeks older. And if Grace is up to it, we may even give her a left over cupcake to practice on tonight.

Happy 1st Birthday Gracie!!!!

You made it baby, you made it to your 1st birthday, you are my hero!! There were days where we honestly didn't know if you would make it through the night, but you always pulled through and surprised us all. It is amazing that after all you have been through you can still smile and laugh.

I know I post so many pictures and many times they look very similar, but these ones are my favorites from our most recent 'photo shot.' I feel like each of these photos shows a different side of my Gracie girl.

Gracie still lags behind quite drastically compared to other one year olds and even to many of her heart buddies who were born around the same time as her, but she is doing wonderfully considering spending almost an accumulated 6 months of her life in the hospital.

Grace is sitting up with support and absolutely loves her jumper, it is hilarious to see her get excited while in it, she just goes wild. Though she isn't eating much more than formula, she loves to suck on cheese puffs and carrots until she gets some on the back of her tongue and gags on it.

She still hates tummy time and putting weight on her legs, but we can get her to do almost anything when Mickey Mouse Clubhouse is on---she gets into a zone, kicks her legs in excitement and talks to the TV (I'll have to get video of it).

Though this year has been extremely hard and stressful and at times almost more than we could handle, we would go through it all over again just to have our sweet Gracie girl with us smiling and flashing her beautiful all encompassing eyes at us.

Grace, we hope this next year is filled with so much more joy and happiness and a lot less time at Primary's.

Catching Up---lots of pictures

I can't believe that it has been almost a month since I last updated the blog---I've been trying to pack as much fun as possible into this summer in an attempt to make up for last summer and being in the hospital.

Morgan and Jason went camping over night, while Gracie and I stayed home. We did go up to pick them up and enjoyed some outdoor fun, but had to increase Grace's oxygen because of the increase in altitude. Gracie really enjoyed the hammock and swinging with her big sister.

We've been going to the park, going for walks and playing at Grandma's house with cousins. Gracie loves the swing hanging from their tree and loves to lay under it and watch the leaves blow in the wind.

We pulled out the swimming pool and though the water wasn't as warm and Grace would have liked, I think she loved her first experience in the kiddie pool.

But perhaps the most enjoyable outing so far was this last weekend, we went up to Eden, UT with Jason's parents for the night and went swimming and just enjoyed being a family. Though I swear we spent more time packing and loading the car---concentrator and all---it was worth it. My only regret is that I didn't bring Gracie's swing, those of you that know her know that she loves her swing and I was foolish thinking that she could do one night without. Thank heavens for grandpa, who was willing to walk around the parking lot with her at 1am in hopes that everyone else could get a little sleep.

Gracie enjoyed this swimming experience so much more just lounging in her little duckie float. She can maintain ok sats off of oxygen for about an hour, so we disconnected her and she did great. Unfortunately it wore the poor sweetie out and I didn't dare take her swimming again the morning we left..but there will be plenty of times to go to local pools.

Update

Everyone is asleep taking naps and though I should be doing something more productive like dishes, laundry, exercising I am attempting to start and finish a blog entry. Things have been crazy and most of the time I feel so overwhelmed that though I want to write down my thoughts and feelings and send it off, I just can't---I guess it is just my way of responding---keeping it to myself till I burst :) It may not be the most healthy thing, but hey it works and keeps me going.

It seems like Jason has been out of commission for the last 6 weeks--first knee surgery and now pneumonia. We thought he was getting better but today he woke up feeling just as terrible as he felt last Thursday. We are going to the doctor in a little while and there is a very likely chance that he will be hospitalized--the last time he was in they told him if he didn't get better he would have to be put on IV antibiotics.



Gracie is doing well other than teething like crazy, in addition to the 6 teeth she already has, four more are working their way up including 2 molars. We had a follow-up cardiology appointment last Monday and things look good, we don't go back in until September!!! Unless of course she needs another cath sooner than later, her last Echo showed that there is a vein or artery that has grown quite large that it looks as if the blood flow in her left pulmonary artery is flowing backwards---we're hoping its just a collateral that needs coiling because if not things aren't going looking so good in her little heart. But we are waiting as long as possible before they want to go back in.

We did try weaning her diuretics this last weekend and we almost had to take another trip up to Primary's...instead I played doctor and put her back on her diuril and called Dr. Jou the next day to tell him what I had done. Looks like she will be keeping her diuretics and weekly blood draws for awhile, least she is off of the ativan and methadone---though they would have come in handy this last weekend, she was miserable and wouldn't sleep or stop crying.



We went to our family doctor today and Gracie got her second round of immunizations; she was so happy the entire appointment until the nurses came in with the shots in hand, then she screamed like there was no tomorrow. She weights 13 lbs 15 oz and is 27 in long--she's so close to 14 lbs, wahoo!! We're all optimistic she can gain more weight on her own so we are holding off on the G-tube, which makes me happy. I think the thought of one more surgery drives me nuts.

Not much new to report developmentally wise, Grace's physical therapist comes again on Wednesday and I'm going to see about getting them to come more often since he is only coming once a month. Though I know how to do the exercises with her, she just seems to do it better for him. Funny, huh?

Yesterday Gracie turned 11 months old, I can't believe its almost been a year. What a year it has been, there were so many times we didn't think she was going to make it but I am thrilled that she has proven us all wrong---YOU GO GRACIE GIRL!!!




Yesterday evening: bathed, pjs and getting ready for an evening walk.