Surgery is Postponed

Well, the nurse practitioner came in about 10 this morning and said that the surgeon had an emergency surgery at 2 am and they were bumping Gracie to tomorrow because they would not have a room in ICU today. So if all goes as planned, Gracie will be having surgery at 7 am in the morning.

Surgery Day= Thursday!

Today a surgical nurse came in and talked to Mom and me. She was very nice and helpful. Gracie's heart surgery will be done on Thursday as long as no emergency cases come up. We still have not seen the doctor, but he is supposed to come by tomorrow. She said that Dr. Fraser will cut Gracie on the chest and look at the heart that way instead of going under her arm. She said that once in there, they would be able to get a good look at everything and compare it to the echocardiograms. That makes sense that the eye does better than a picture! She also said that it could be worse or better than it looks on the echo.

The nurse said that they are very slow and take their time in surgery to try and prevent having to go back in and fix something afterward. The surgery will probably take about 6 hours if everything goes smoothly maybe longer if there are complications. After surgery Gracie will be on the cardiac ICU floor (18th floor) probably for a few days, just depending on how good she is doing. While in there, she will be on a ventilator along with other tubes. I am not really looking forward to that, but think that I have prepared myself to see her like that. What I am having the hardest time with, is the fact that they will cut her down her chest and break the sternum. That hurts me even to think about it.

After she is off the vent and I am assuming all the other tubes, Gracie will be moved back down to the 15th floor for a few more days before being released from the hospital. Before releasing her, they will have to make sure that she is eating good and gaining weight at a steady rate, so hopefully that won't be too long. For someone that is only 5 pounds 6 ounces, I hope she gains weight quickly and doesn't loose too much if any!!

After leaving the hospital, we will have to stay in Houston another week or two to make sure that everything is okay and Gracie will have a follow up visit with the doctors. Recovery time is about 4-6 weeks usually.

I will post more later and have tons of pictures over the last month that I need to get on! Maybe that will get done on surgery day. Todd, Callie, Kadee, Dad, Tommy, and Jeannette are coming tomorrow so just keep praying for us and their safe trip! (or at least Todd's...this is Callie and Kadee's first flight and Todd doesn't like to fly anyway! At least he has help!!!)

Still Waiting...

Well, we are still waiting on the surgeon to come in. The residents came in this morning and said that he wasn't coming today either. Gracie is about the same. She is doing pretty good but is still on oxygen and did another chest x-ray today. As of right now, it still looks like surgery is still probably Wednesday. I hope the doctor comes in tomorrow morning so we can know for sure. Todd, Callie, Kadee, my dad, and Todd's parents will be flying in on Tuesday. I will update more tomorrow when we know a plan.

Keep us in your prayers until we go home!

Looks like we are here to stay a while!

Let me help everyone with gradient in case you are like me and had no clue what dr was talking about:

Gradient: (robyn's def): the gradient is like a water hose when you put your finger over the front of the top of the hose. The pressure inside the hose is a lot more than what is leaking out of the hose, therefore the pressures are different! (maybe that helps)


We are still in Houston and not by choice. Yesterday morning, we thought we might get to go home Monday afternoon or Tuesday. The residents and the attending doctor came in and I asked them a lot of questions and they said that they would present her case at a conference on Monday morning, but did not expect anyone to want to do surgery at that time. One question in particular was how is there such a big difference in the gradient levels compared to Lubbock. The only answer they suggested is that it could have possibly been the technician. That didn't make me really happy so I asked the cardiologist again when he came in later. He said he was not for sure but would repeat the echo before she was released. I guess I kept asking enough so that they decided to repeat the echo yesterday afternoon. Todd's dad was here and took her down while we went to eat and change hotels. About 4:00, Todd's dad called and had the doctor in the room with us. He said that the echo confirmed what Lubbock saw and that he would talk to us when we got to the hospital. So off to the hospital we went.

When he came in he said that during the echo Gracie's heart rate had a lot to do with the gradient. When her heart rate is low, the gradient is low and when it is high, her heart rate is high. He also said she has what is called Shone's syndrome or disease which just means she has multiple blockages and they are all on the left side of her heart. They also found a membrane above the valve that is not supposed to be there. They moved Gracie to a step down room which just means they are watching more closely. He said that he would just keep the plan the same until Monday as far as presenting her case at the conference and he predicted that she will have surgery within the next couple of weeks. If we wait for the surgeon that was recommended from Dr. Robinson (Lubbock cardiologist) then we will have to wait until the week after spring break. So we will just wait until Monday and find out an answer and definite plan on what exactly is going to happen.

I know I probably left some things out or didn't tell you everything since my mind is going a hundred miles an hour, but my sister Amy's blog ellysonfour.blogspot.com also has updates and probably will be updated quicker than mine! Keep us in your prayers!

Houston here we are

I bet most of you know by now, but we are in Houston with Gracie. Sunday she started coughing really deep and Callie was throwing up so I called Monday morning to get them to the doctor. They could not get them in until Tuesday so off we went on Tuesday morning. When we got there, I undressed Gracie to weigh her and she threw up everywhere! After cleaning up everyone and the doctors office, we weighed her and the nurse came around the corner to see Gracie. She took one look at her and told the nurse tech to go get the doctor now.

Anyway, Gracie's temp was 94.1 and she was gray! I knew right then we were headed to the hospital. They called an ambulance and took Gracie and I to er with oxygen on and Callie being the trooper she is stayed at the doctor's office until Kristi came and got her. At the er they did a bunch of test and said that Gracie had pneumonia. Well, so we knew we would stay for a few days. The cardiologist came in later that night and told me and my mom that he was not convinced that this was pneumonia but rather it was the valve acting up so I stayed the night and poor Gracie, they did not let her eat! (did i mention that Todd was throwing up on Tuesday and where was kadee? she was with todd's parents to try and avoid her getting sick!)

Yesterday they did an echo cardiogram at 10 and about 12, the picu dr came in and said that he wanted us in Houston! So I rushed home, threw everything in a suitcase and todd, still not feeling good, did the same and rushed back to the hospital. Todd and my dad left at 3:30 yesterday and me and Gracie got to fly on a Kangaroo crew jet! Boy, that was fun! (it was okay until we were about to land and I thought we might die but we didn't)

Last night they did an xray of her chest and blood work, but will keep repeating every other test today including another echo. So as of right now, she will be watched very closely and the team of cardiologists and surgeons will determine what the best next step for Gracie will be. They did finally let her eat and what a difference that made!

Thank you so much for the thoughts and prayers already. I don't know what we would do without helpful and supportive parents and family along with friends! I will try to keep you updated as much as possible!

Things I've Learned

Okay, so with Valentine's Day and being on a diet, I figured out that it could have been really really bad! It is all my fault since I was the one who bought the candy, but I did really good! Some of you know that I started Weight Watchers to lose some weight. I started two weeks ago and tried really hard not to eat anything sweet the first week. That didn't work or I was not motivated, but week two came around and I got busy. I kept track of all the points and did really well until Valentine's day. I bought the girls some sugar cookies with the hearts on them. That is a weakness for me especially when they are hot, but I kept looking the other way. I did really good until Valentine's night and decided to see how many points they were. I looked at the box and for 2 cookies it was only 3 points! I was so excited. Here is where hopefully you can tell I am determined to lose the weight. So I had two cookies and instead of keep eating more, I decided it was time to see how many total points the rest of the cookies would be. (some of you may be saying that is the math teacher in me, but oh well!) How many points do you think it was for 18 cookies?




Keep Thinking......




Higher or lower.......



27 points!!!! Right then, I decided to walk away!!



So my lesson was that those cookies were not worth the points but I could still have a few if I really wanted them. I know I can eat anything with weight watchers and that is the nice thing, but now I decide if I want to give my points up for junk or save up for something special!

We're home...again!

Hey everyone! We got dismissed from the hospital. Yea!!!! They are still not sure what was causing the machine to keep going off and the weird breathing, but at least they watched her. The monitor company downloaded the material so hopefully we will get the report when we go to the doctor on Monday. The doctor ran a bunch of test and all came back negative. They also did a chest x-ray. That showed that she might have a little respiratory virus and that is a possibility for our night.

The only other things included that Gracie is anemic and has to be put on a vitamin, but he said that it is not uncommon in preemies, and that her theophyllin level was a little low, so her pedi will decide what to do with that. We have follow up appointments within the next couple of weeks so I will keep you updated.

Thanks to everyone for your support and prayers. I know that I am probably overly cautious with Gracie, but I feel like it is so much different with her than Callie and Kadee!

I hope everyone has a great valentine's day!!!!!