Saturday, October 24, 2009

Cath in review

Finally, the house is quite, girls are in bed and I can breathe and regroup some after yesterday and today.

So here's what happened...Gracie was in the cath lab for just under seven hours and came out extubated with 8 more coils!! (She now has 25 coils in total, you should see her x-rays the upper right lung is almost impossible to see because that is where the majority of the coils are!) Dr. Day was concerned with bleeding around her bladder because he had to go through a higher vein to place some of the coils in the correct spots, so he wanted to watch her until at least 8pm to make sure she was ok.

The good news is that they didn't find anything too alarming. They debated placing a stint in one of her pulmonary arteries, but decided to wait and see how she does. The pressures in her lungs are rather high, not too high, but higher than they like, so because of that we have added another medicine to her regimen, sildenafil or more commonly known as viagra. It helps relax the lungs and surrounding veins and arteries, thus helping with the pressures.

They also found a plural effusion, it is small and can only be seen using ultrasound, but it is there. So instead of decreasing her diuretics, we have gone back to bumex 3 times a day, aldactone 2 times a day and have needed to add sodium chloride back in at 4 times a day. Which also means more blood draws to check electrolytes.

When Gracie's cardiologist, Dr. Jou came by to see how she was doing I asked him if there was still a chance of possibly coming off of the oxygen, maybe in a month after she has acclimated to her new hardware and he laughed at me! Now Dr. Jou and I have that kind of relationship so don't be alarmed that he laughed in my face, its just that we know Gracie and nothing is ever easy with her. So in addition to not getting off the oxygen any time soon, the doctors also want Gracie's oxygen increased from 1/4 of a liter to 1/2 liter---all this is in an attempt to keep her pressures down in her lungs.

Needless to say things didn't happen the way that I had hoped they would after the cath but it could be worse. I'm having a hard time realizing that at least for the next few years Gracie will have to live with oxygen 24/7 and I know that there are many heart kiddos in similar or worse places, but it just makes it hard.

Friday, October 23, 2009

6 hours and counting

Gracie is still in the cath lab, it has been over 6 hours and the only update I received was two hours ago---things are going great, there are just A LOT of collaterals to coil, but Gracie is doing great. I'm ready to be on the recovery side and work toward getting her home, I think the longer she is in the lab, the chances of them wanting to keep her over night increase. Time will tell.

Meantime, please pray for our little heart buddy Owen. He is on the verge of being place on the transplant list and his family just found out that it could be sooner than later. Owen needs to gain weight, hopefully by gaining weight he can wait for his new heart outside of the hospital for a while. Also please pray that his momma, Andrea will find a hotel to stay in. They live in Arizona and have to travel to California for Owen's cardiac check-up, they weren't planning on staying too long this trip and now can't get a reservation anywhere.


Gracie was the first case this morning so we have been here at the hospital since 6am. Grace has been as happy as can be, just smiling and trying to have fun---but I'm a mean mom and wouldn't put her down to play with all the germie toys!

Its always nice to come back "home" and see so many of our friends, they love to see how Grace has changed and gotten so much more mature. When I ran into people without Gracie in my arms they all stopped to make sure Grace was ok and find out why she is here. A hospital is never a place we like to be at, but knowing that there are so many here that love and care about Grace makes it easier.

I handed Gracie over to the wonderful cath lab nurses at 7:40am, though Grace didn't cry, I could see the apprehension in her eyes. No matter how many times I have had to hand her over it never becomes easy. I've been waiting for almost two hours without an update and have those sick, nerve racking butterflies in my stomach, oh how I hate that feeling.

Dr. Day said that they were planning on 4 hours and that they would have to enter through both Gracie's neck and groin. If things run smoothly and there are no complications we could be home later today! I'm hoping and praying for that, I hear coughs, sneezes, and people sniffling and I just cringe.

Tuesday, October 20, 2009

Cath lab here we come again

Remember how we were trying to wean Gracie off of her diuretics and how she tolerated going from three doses a day to two? She did amazing with that wean, how foolish we were to think she would tolerate going from two doses a day to only once a day. Within hours she developed that oh so familiar cough and within two days she went from 1/4 liter oxygen to 1 1/2 liters. After two days I put her back to the two doses a day and was even tempted to give her an extra dose of diuril, it took her 5 days to get back to her norm. I called cardiology on Friday and yesterday, Dr. Jou called to tell me that someone will be calling me from the cath lab to get Gracie in on Friday. I guess that is what you get when you can use frequent "flyer miles" :)

Dr. Jou and Dr. Su both think that Gracie has more collaterals that are keeping her from coming down on her diuretics (currently she is on 4ml's of bumex twice a day and .6ml of aldactone once a day, that's a lot for a barely 15lb baby!) Maybe this time around she will be able to come off of oxygen completely, even if it is only during the day. I have lofty hopes that this will be the case and then if she qualifies for a G-tube, maybe will actually get to have Gracie's face tube and tape free for the first time ever!

Monday, October 19, 2009

All about Morgan

Yesterday Morgan officially turned 3 years old, leaving me to ponder how wonderful our life has been to have her in our lives. We got pregnant with Morgan only 2 months after Jason and I were married, both of us felt we needed to start a family soon after we were married and we were blessed to do so so quickly.

I always knew my first child would be a daughter, I knew that becoming a mother to a daughter first would bring so much healing. Being a mother to Morgan has been a joy, in all sense of the word, Morgan is amazing!!
I love the way Morgan loves. I love the way she adores Grace and just can't get enough cuddles in with her---I am always telling her that she needs to stop hugging Grace or she needs to let go of her hand because Grace doesn't want to be cuddled anymore. I love how talkative she is, even if there are times that I beg her to find a quiet activity to give my ears a rest. I love how Morgan is a gift and a joy to all that come in contact with her, she loves friends and once she meets them, she can't stop talking about them and using their names for the names of her beloved babies.

Basically I could go on and on about all the things I love about my "little baby" but I won't. We are so blessed to have Morgan in our lives, through all the heartache our extended family has been through Morgan has been what has kept us happy and full of hope for brighter, more beautiful days. We love you Morgan!!!
So the girls aren't allowed to go to church any more right now as we are trying to stay healthy and away from all the germs. After our own little nursery lesson, we decided to play with one of Morgan's new birthday toys. We like this 'doll' a lot more than the one that came in the set.

Tuesday, October 13, 2009

Birthday Party

I cannot believe that my little baby, will be 3 years old on Sunday!! Oh, how fast the time goes by! We celebrated Morgan's birthday today with a big family party at our home. Morgan woke up so excited, especially because her cousin Cade flew in today and was going to be at her party.

We had Morgan's favorite meal--chicken nuggets (homemade) and fries, along with a yummy fruit salad, steamed green beans, and baby carrots. Then we opened up gifts and sang, and within minutes the birthday cake I literally slaved over for three hours was devoured. Morgan wanted a chocolate Minnie Mouse cake and if you don't mind, I'm going to toot my own horn, the cake came out wonderfully--especially for not having a mold or anything!!!

I love this face!

I'll post more about my soon to be three year old and how much I love her and all her wonderful traits and cuteness, but for now here's some pictures from the day.
Trying to get a picture with all of the cousins.
Is it bedtime yet?

Friday, October 9, 2009

15 Months

I can't believe that Gracie is already 15 months old, she seems so much younger than that! I am so grateful for all of the blessings and miracles that we have seen in the last 15 months of Gracie's life---its amazing how much Grace has gone through and overcome. I hope and pray that she will continue to be strong and determined as she continues through her journey here.

Anyways we went in for Grace's 15 month check-up, I finally switched her over to a new doctor, a pediatrician as opposed to our family doctor--this may sound funny but it was extremely hard to make the switch. I just love our family doctor, Shelly Savage, and how she has been with us from the beginning, other than Jason and a few family members, it was her 'shoulder' that I cried on upon finding out about Gracie's condition in utero and dealing with the fears and anxieties for the 4 remaining months of my pregnancy. I felt it was time to switch Gracie to a pediatrician because cardiology isn't following her as closely anymore.

We love the new doctor, he actually was Jason's when he was a baby and child. He spent an hour with us today learning about Grace and all of her surgeries, complications, and just plain uniqueness.

Gracie is doing well, has made some progress in weight gain, but nothing to write home about. Grace now weights 15 lbs. 8 oz., and is almost 29 inches long. So we have finally scheduled a G-tube consult for next month--we're hoping by then we will have her off more of her diuretics, though that isn't going too well right now.

Overall, Grace is doing amazingly well. She still hates sitting up, but can do it for about 5 minutes on her own. I think it pulls on her scare tissue and muscles as she stabilizes her core, she just cries in discomfort and pain until she lays back.

I think that is all now, I feel like I am just rambling now---sorry for an extremely random post.

Thursday, October 1, 2009

No tubes...for a bit

We've been working with Gracie even more on oral eating and really it isn't going anywhere. Today I needed to change her NG, so I figured we would try feeding her without her NG tube to see if that would help. No change!

Gracie loves to put things in her mouth, but when it comes to food, she very rarely will allow food to pass the middle of her tongue before she lets the food pool out of her mouth. So in addition to different textures, we are trying different tastes too. Yesterday Grace loved sucking on a piece of roast beef, and last week she couldn't get enough of the olive oil and balsamic vinegar (like at Macaroni Grill) on a piece of bread. One day it will come...even if it is when she if 16 :)

(Gracie's way to wear her oxygen. Do you think it still does her any good? She is constantly doing this. )

In addition to the NG tube experiment, I took Gracie's oxygen off, just to watch her took about 45 minutes before she dropped below 70. But boy did we enjoy those 45 minutes of tube free freedom. I don't know who was happier---Gracie or Morgan. Grace rolled all over the house, she rolled into corners and places that she never has been able to get to. All the time, Morgan danced and sang, "Yeahhhhhhhhh, Gracie has no tubes! Yeahhhhhhhh, Gracie has no tubes! No more tubes for Gracie."

It was so hard to put the oxygen and NG tube back, Gracie just looked at me and started to pout. Oh how I dream of the day that Gracie could live off of oxygen, even if it is only for a couple of hours a day.

For those of you wondering, Morgan did great with her surgery. She didn't complain much of pain, but was very whiny and not herself for several days. It was so sad, all she remembered was that "they put the mask on her and then her teeth ripped."