It is March?!?

So it is many months later and Grace is truely doing great!! I have ben super busy since work has started in August and it is hard to believe that so much time has passed. Grace has gone from slowly falling off the growth chart to getting back up to the 10-25th percentile for weight. She gets 27 cal formula and we add formula to her baby food to increase calories as well. She has been receiving physical therapy and speech therapy and still is holding out on crawling. She is now 10-months old and never turns blue and has overcome 3-weeks of colds back in December. This was a huge milestone to make it through being sick and not having to be hospitalized one.

We had a follow-up cardiology appointment this past week and the tentative plan is a possible cardiac cath procedure to check the pressures in her heart. Grace's tricuspid valve in her heart is still considerably leaky. At this time the doctors are still considering a Glenn procedure (which is open heart) or leaving her with her heart functioning the way it currently is. Boy this really bummed me out because I thought the Glenn procedure was out of the picture, but it is not. It is hard to believe that she may need more surgeries especially with how great she it doing. I really thought we were not going to be talking about surgery for another 2-5 years:( Now we wait. The cardiologist is presenting her case to the surgeons and the cardiologist team at Hope on Wed., so we will not know what the plan is until after that date.

Sorry I have negleted the blog....but I do want to keep this going for everyone...so I will post when possible.

Gavin on the other hand is doing great. He loves going out and about and Keith just took him to the grocery store. He is trying to say so much but he is a bit hard to understand. He is now 20-months old and really enjoys having control over his environment. He loves Thomas and koves picking videos to watch. He picked out some Thomas pajamas with Keith yesterday!! This is super exciting to wathc him grow up.....even though I wish sometimes he would stay baby forever:)

August already!!!

Well, the last cardiology appointment was fine....all they did was listen to her heart through a stethoscope and said she sounded good. Since then......we ended up in the ER last week because Grace paled out 2x and didn't eat well for a day...so the cardiologist's nurse felt those two simple things warrented a check. After 3 hours ...with an echo of her heart, the emergency room felt she was OK:) Whew....now tomorrow she has another cardiology appointment. She will have another echo and hopefully we will hear some kind of news.

On the home front...I have started work again full time so I have been super busy!!! It is hard getting back into the swing of things. I am also sorry I have neglected this blog...I will try to better...even if it is just a "we are doing great" little note.

We have an appointment

We have an appointment for the Cardiologist on thursday now. It sounds as though they are only going to do an EKG at this time versus an echo. I will ask them more about it on thursday. The good news is we will probably be able to go to the picnic on Saterday. As long as her appointment goes well, I can get her shots on Friday and then we can start to venture outside of the house!! We will still have to be cautious, but she can go out as long as no one is ill around her. This is exciting news!!

cardiologist??

So I have been trying to get a cardiologist appointment but no one calls me back. I really know we need to follow up, but I have called 3x already this week and no one calls back to schedule the appointment. I was really hoping that Grace would be seen so I can get her shots and go to Keith's family picnic with her, but if she does not get her shots, then she won't be able to go. Kinda frustrating. I guess the good thing is that they are obviously not as worried about her as they were before this last surgery...but still.

Grace had a very sleepy day yesterday, but today she is back to her wakeful self. She decided wakey time was at 5 this morning and has pretty much been awake since. She will also be getting a bath today as well!! Baths are not really her favorite thing, but she needs to get cleaned, so sometimes she just has to do things she does not want. I guess that is training for life:)

going well...

Grace is still doing very well. She has been getting bigger by the second. I have to schedule a cardiology appointment for next week and then maybe we will know how well she is doing. Her heart has not been looked at since her surgery, so I will be very excited to see the cardiologist. Other than that we are still doing great:)

The home front....

Grace has been doing great since her surgery. She seems some what back to her normal self. She is eating anywhere from 3-5 ounces at a time; however soemtimes she is just grumpy. That is a baby though so all in all that is pretty healthy. I feel so lucky that she has done so well. Next week we have a NICU and surgical follow up appointment. I am confident that they will be pleased with her progress. Grace is just so beautiful and such a good fighter. I myself have been busy with work and just life in general. Gavin is doing well too! He is just the cutest little guy in the world. He loves motoring around touching anythin and everything. He is a very busy guy. He has become so much more affectionate as well; which I love because that means we get to cuddle! He has showed and increase interest in books as well. All in all things are going great for now....I don't want to jinx it:)

Baby.....I'm coming home...

Gracie girl is coming home tomorrow!!! She is doing great. No oxygen, she is eating by mouth. It will take her 2-months to be back to more normal as in being able to pick her up under her arms, but....she is good. It will take another 6-months for her breast bone to heal completely. More surgery is expected before she turns 1, but the extent won't be known for some time. For now we just hope for the best and will help her fight to be as strong as she can. I hope the pain she endures now smooths the path for the rest of her life!! She is entitled to the world....ohh little precious one.