GI Clinic

The GI clinic had a cancellation on Wednesday so I took Gracie in for a consultation. I mostly talked to the nurse and she asked all about Gracie and her history. The nurse left and went to talk to Dr. Jackson and they both came back in. They agreed that her relux medication doses were too low and almost tripled some of them. They want me to try that first and see how she does. If she does not improve then we will try different formulas. (By the way, Gracie cried the ENTIRE 2 hours that I was in the clinic--good times!) So now she is on the following doses of reflux meds:

Zantac .7ml 3 times a day
Reglan .6m. 4 times a day
Prevacid 3.1 ml once a day

So far, it has not made a difference. About 3 weeks ago, I started having to give Gracie half of her food for the day in formula because I was running out of my milk. For the last 1 1/2 weeks or so we have had to give her about 80% of her day's milk in formula. I think this may be the problem. I don't think she is agreeing with all that Pregestimil. I have about 4 bags of milk left in my freezer and I am experimenting today with all fortified freezer milk to see if it makes any difference. I am a little sad that I am not providing her enough milk anymore, but I figure pumping for 7 1/2 months is pretty good.

Gracie is still quite fussy. She has a fairly good day once and a while but on the whole, she is a bit of a crabby patty. We all say that we would be too if we had her life!! So we make sure to enjoy the good times and the bad times with her and to try and just be grateful that we are all home as a family together.

Since my last post we have discovered a few new things that Gracie likes. When she is fussy, I can just dance around with her to ABBA's greatest hits--yep, that's right, ABBA (I love them and I loved the movie Mama Mia!!) and she quiets right down and sometimes falls asleep.....pretty funny!! When you give her her lip gloss she absolutely goes crazy like she is a drug addict trying to eat it. So my friend had the idea to twist it all the way down and let her just put it in her mouth and lick it.....another one of her favorite past times. Also lately, she has acted like she is thirsty so we give her water through a syringe and she drinks it.....it is pretty cute. However, if you try to put some formula or PediaSure in there, she does not like it, so I am trying to think of what I can do to get something with calories in there that she likes.

I will post some Halloween pictures of her soon!! (Gracie's FIRST Halloween!!)

Happy Halloween everybody!!

New Surgery Goal

I talked to Dr. Su, Gracie's cardiologist, today to confirm that we are NOT going to do her surgery on November 5th. The goal right now is to push her out until January or even February if her saturation levels stay between 75-85. They are hoping that this extra time will allow the pressures in her heart to go down. Right now they are double than where they should be. I took her sat levels today and they were in the low 80's on room air which is good. We won't know if her pressures have changed until they do ANOTHER heart cath in probably January. If her pressures are still high at that point then it is not good news and they will have to discuss as a cardiology/surgery team what they would like to do for her.

She has been approved for the Synagis (RSV vaccination) shot and will start those at the beginning of November. She will get this shot once a month. Any guess as to what it costs? $1200-$1600 PER SHOT!!!!! Isn't that incredible? They have also advised our little family to get the flu shot. So I will be scheduling that in the next couple of days.

So, we will hopefully stay as healthy as possible for the next couple of months and enjoy the holiday season with our sweet girl. Thanks again to everybody for all of your concern and support!!

Happy 7 Month Birthday Gracie Girl

I took this photo of my GG today on her 7 month birthday. I was so happy to catch a smile. We have felt Gracie's personality has been gone since she has been home from her cath. She whimpered for about 4 days straight. Yesterday she cracked out a couple smiles, and today a few more. We are slowly getting her back. Cath's are pretty brutal. It is disappointing to think she will have another one before her surgery. I haven't heard the final word from cardiology but I am almost positive that her surgery has been officially canceled. They called today and scheduled a follow up visit for November 3rd, so we will most likely not be headed for surgery two days later like originally planned. I hope to talk to cardiology tomorrow and get a better outlook as to what the plan is for her. For now, we will just enjoy her being in our home a little bit longer and HOPEFULLY we can have the holidays to ourselves at home and have her surgery after Christmas sometime.

Happy Birthday to my sweet baby girl!

Home, But Still Working The Kinks Out

We were able to check out of the hospital this morning around 10:45a.m. Gracie seemed to have a little bit of a rough night because she threw up 4 times. They decided to turn off her food because of it around 6:00a.m. This short experience in the hospital proved to be a little more frustrating than when we were there for 2 1/2 months. I told the nurse that during our last stay, in a way it was like she was kind of their baby and that this time around, she was MY baby. I know her now, know what she likes, how much food she can tolerate, when she should get her meds etc. So it was hard to not be the one in charge of her care. To sit back when you know something should be being done for your baby is very challenging. It took them until 10:00 p.m. last night to get everything organized to finally start her on food even though we had the go ahead at 6:30 p.m.. By 10:00p.m. it had been 16 1/2 hours since she had last had food in her stomach. They gave her sugar water through an IV but no milk. Don't get me wrong, we think Primary Children's is wonderful. It was just really difficult to sit back while certain things like getting her food and meds were delayed, and delayed again.

Since we've been home, Gracie seems to be hurting. Some of Gracie's side effects are:

1. Raspy cough and cry. I'm sure my poor baby has a sore throat from that breathing tube being down her throat for about 5 hours.

2. A sore where they took the IV out and two other sites where they obviously attempted an IV and failed.

3. A big bruise on the outside of her right leg. They are not sure how she got it. They think it may have been from the restraints they put on her while in her cath.

4. Four pretty good scratch marks across the back of her head. We think she scratched her head on the cords coming off the blood pressure cuff that was on her upper arm.

5. And of course the sore in her groin area where they went in with the catheter.

It breaks my heart to see her in pain. Gracie cries or whimpers every moment when she is awake. Hopefully we will have our little smiley girl back in a few days. I am grateful for modern medicine and the abilities of the wonderful doctors who have the knowledge to attempt to fix what is wrong with our Gracie Girl. With the reality of her condition on the forefront of our minds the last couple of days, I could not help but think that she should not be alive. For how severe her condition is and what she has been through, she truly should not be here. We are grateful for every minute Gracie is in our life. We appreciate all of you who are praying for her. Your prayers are working!

Echo Looks OK

We talked to the cardiologist working today here in the PICU and based on her Echo this afternoon, he said there is a little bit of tricuspid valve leakage (which he said is pretty normal) but no stenosis or blockage. So from what we can tell, that is good news and we won't have to worry about any repair of that valve or a heart transplant. Whew!!

We're BAAAAAAAACK

Here we are, back in our favorite luxury hotel.......the PICU. Dr. Cowley said that putting the stent in was a challenge. He had a hard time getting the stent into the right spot but he did it and it seems to be working well. He admitted Gracie to the PICU and wants her to be observed overnight.

We came in to see her and she was pretty feisty. She was kicking her legs all around and turning her head side to side. She was REALLY bugged that the breathing tube was still in. They sedated her and did an extensive echo of her heart. Dr. Cowley is in another procedure but he will look at it when he gets out and come talk to us about what they find.

He mentioned that they think the reason for her high pressures could be that the tricuspid valve might not be working properly. He said "Can we fix it? I don't know. Will she need a heart transplant? Maybe." We will have to wait and see what they find out from the echo.

Once Gracie woke up from being drugged, they extubated her and gave her to me to hold. (I am holding her right now in my arms, she is sleeping and looks very peaceful.)

It has been nice to see so many familiar faces here in the PICU. It makes being here not as scary as the first time. This is after all, our home away from home. So for now, we are just hanging out. Thank you so much for all of your prayers!!!!

Troubles with Gracie's Heart

Our Gracie Girl and her daddy, pre-op, waiting for her cath

We came in this morning for Gracie's heart catheterization at 8:00. They took all her vitals and we changed her in her hospital jammies. She pulled her feeding tube out on our drive up so to calm her down before the procedure they gave her some Versed (through a shot up her nose)and Calo-something under her tongue. She was a little glassy eyed when we passed her off. This made it a lot easier than passing her off crying or whining for me.

The cardiologist Dr. Cowley, paged us at about 11:30 and told us that her pressures were too high. The connection of her SANO tube from her right ventricle is tight and through the x-rays it was showing little blood passing through it, almost looking like it was kinked. He called Dr. Su in and they discussed the options and thought it would be best to put a stent in to open it up. They are in there right now doing that and said it would take about an hour. We paged Dr. Su and met him in person to see if he could explain it better to us.

He said the pressures in her right atrium are around 16. A normal babies pressures are between 4-5 and for a Hypoplast they want them around 10-12. They are hoping by putting the stent in, it will improve her sats and buy them more time to see if her heart will get better. If her sats go up after this procedure, they talked about maybe pushing her surgery possibly another 3 months. If not, they would be forced to choose between two evils. They would most likely have to go in and do her Glenn as scheduled in a few weeks, but she would have a complicated recovery and possible long term complications.

I really thought our Gracie Girl was going to give us a break this time and let at least ONE thing be easy but I was mistaken. Dr. Su said they are all aware that Gracie is NOT an easy case and is really high maintenance. Tom told him that she was a lot like me that way, very funny!!

So we are waiting for her procedure to be done. I am not sure how many people are even reading her blog still but I plan to continue to update whoever is interested in her little story! Thanks so much for all of your support, I will post later!

p.s. I tried to load a picture of her and it is not working in the hospital, I will add it to this or a future post later.

p.s.s. I forgot to mention that they said they only do about 6-7 stents in a year during heart cath's. So not very common!

Surgery Date

Well, we have a date. Gracie's Glenn surgery will be Wednesday, November 5th. She will have her heart cath on Tuesday October 14th. We would like to have a special fast in her behalf on
Fast Sunday, November 2nd. Thanks to everybody for all of their love, care and concern for our Gracie Girl!

p.s. I took Gracie in to her pediatrician yesterday for 4 immunizations and a check up. He is really concerned about her reflux. He thinks she may need to have the G-tube/Nissin (sp?) surgery. They have contacted GI up at Primarys and we are waiting to hear back. So we may have a little more on our plate than just dealing with her Glenn.....we will see.