Wednesday, January 26, 2011

Much Needed Update

I just can't believe what a horrible blogger I am. I really enjoying doing this, even if no one reads it. It just seems I never take the time to do it. The past month has progressed really well for Raef. He is not like his old self at all, when he cries I know what it is about now, it's not just that non stop crying anymore. That has been a huge relief. He is eating like a maniac....loves baby food and is taking about 4 to 5 ounces from a bottle. Amazing since he was only taking about 2-3 ounces before the Glenn. Most importantly..... he has gained 3 whole pounds in a month!!!! I am so shocked about this he looks like a different baby now. When he was born he weighed 9.1 and when we went to the hospital for surgery he weighed 12.6...he was 7 months old. Yes you counted correctly that is 3 pounds in 7 months. So I will take the 3 pounds in 1 month any day. He is still having some issues with his development, he has only rolled over once (of course he was with Scott that day). He isn't sitting or trying to pull up, these are all things a healthy 8 month old should be doing. He is well on his way though, we had a therapist come and evaluate yesterday and hopefully he can start some physical therapy soon. I try not to get to down about it, but it is hard not to. Scott says it's not fair to him to compare him to another child who hasn't been through all he as. He is totally right, but Scott has never been around babies before so he has nothing to compare him to. He is lucky!! He thinks what Raef does or doesn't do is just fine, and it is!! We are so blessed to have this special baby boy, I couldn't imagine life with out him. On a different note he does have 2 teeth! They are so sweet!

In the beginning I blamed myself for all of this. Was it something I did or didn't do right in the beginning of my pregnancy? Why is God punishing me? I am not that bad of a person, right? So over the past 8 months I have done a lot of growing. I have come to realize this is not punishment, but a blessing. This is no one's fault. It is God's plan for our lives. Boy is it an amazing one! I am not saying that I wouldn't make my baby healthy for one second...that is human nature. But we are gonna live our lives to the fullest of our ability's, and not let this awful disease run our lives. It could be so much worse for us..... we have our baby there are many CHD families that do not. I was talking to Laurie the other day and she said something that has really weighed on my mind lately. She said is it so easy to pray and lean on God when times are hard and when things start to get better we forget about him. This is very sad, but true. He never forgets us, ever. I have been so busy with life , that I am not thanking him as often as I should for all he has done for Raef. He has done so much, it is just so wonderful!!

I am really gonna try harder at this!! Thanks for stopping by.

Tuesday, December 7, 2010


Never thought this would be my update 4 days post op......but we are going home! Chest tube, pacer wires, and surgical lines came out yesterday. Discharge Echo is done and looks good. I am so happy!!!!!!!! I'll give more of an update on everything when we are home. God is so good to our family!!

Saturday, December 4, 2010

Been a long week......worth every minute!

As I last posted surgery was scheduled for December 1st. It didn't happen, nor on the second did it happen. December 3rd Olivia's 6th birthday ended up being the day! We stayed in the hospital on the 3oth with nothing to eat all night waited until 4pm on the 1st when they told us some big emergencies had come up and it wasn't gonna happen. They let him eat and then held his food at midnight to go to surgery on the was awful they wake them so often for vitals in the hospital he would wake up then couldn't go back to sleep because he was so hungry. So when they told us the morning of the second he couldn't be worked in for surgery but was a 90% go for the 3rd we decided to stay in a hotel for the night so we could all rest. Best decision ever!

They took him to surgery about 845 that morning, it took about 2 hours to get his arterial lines in....only an hour and a half for surgery. By 3 we were able to see him and he looked so good... not much swelling at all, and only on chest tube with very minimal bleeding. By 8p.m. that night he was extibated and put on nasal cannula, by midnight he was breathing completely on his own. About 4 this morning he took 2 ounces of tube at all (hopefully never). They told us this morning we would get to move up to the floor this evening or tomorrow morning depending on bed avaliability. This afternoon he well get to try some formula, I pray that goes well so we can stay away from the tube!!!!

Thank you all so much for your prayers!! I could have never expected it would all be going so well so soon.....but that is how God works, unexpectedly in HIS own time!!

Tuesday, November 30, 2010

Here we go again...

Today was the Heart Cath. We got here at 11a.m. Raef couldn't have anything to eat after 5a.m. Of course when we got here after an hour waiting we find out that we were being pushed back. Unfortunately we have learned that things are never on time at Vanderbilt. Things always take longer than they are supposed to. I guess that is why they are the best. Once we finally got called back at 2p.m., it was underway. It took about three hours this time, much longer than last time. After it was over they called us to a conference room and said that everything looked exactly the way they had expected it to and we are on for surgery tomorrow afternoon. I am so nervous but very ready to get it over with!!

Tuesday, November 16, 2010

Well it has busy around here. Tomorrow is the 17th and we were supposed to have surgery. Last week we got a call that we had to reschedule they had nothing available until December 1st. So we will do the cath on November 30th (my birthday :( ) Raef is loving his baby food applesauce is his favorite. He smiles and laughs all the time now. I just love seeing him learn new things everyday. I am just ready to get this surgery over with and on with it!!

Thursday, October 28, 2010

Nashville here we come......

Well we got an official date for the cath and surgery, November 16th for cath then the 17th for the glenn operation. I am getting so nervous, but in some weird way I am excited. I am just ready to go and let Raef get on with life. I am tired of setbacks. I am feeling pretty good about his recovery process, he hasn't had any heart issues since the shunt, only stomach issues. I won't count my chickens before they hatch though. He is doing so well lately he smiles all the time and has laughed out loud a few times, it just melts my heart! He is eating cereal a lot better now tonight was the first night he actually saw the spoon and opened his mouth for it. Sunday is the heart walk I can't wait! Laurie (Scott's Sister) is coming in from Florida tomorrow for the walk and to see Raef before surgery. And Olivia too. Its amazing we see Laurie about every 6 months at the least and when she is here everyone else is scum on the floor according to Olivia. She loves her aunt Laurie. I do too, couldn't ask for a better sister-in-law, now if only we could talk her in to moving back home! Olivia is still loving school, and is so excited for Halloween. She is going to be a Clemson cheerleader, and Raef is going to be a football :) That's all I have for now!

Wednesday, October 6, 2010

It's coming SOON!!!

We went to the cardiologist yesterday. While we were there they did an echo that they had planed to send to Vandy to look at and decided on a date. We originally thought the first or second week of November. Once they looked the doctor said the bottom of the shunt was starting to narrow...which is expected about this age. So it looks like surgery is going to be sometime this month. So in like three weeks we are gonna be in Nashville again!! This is just so bittersweet. On one hand I am so ready to go get this over with, but on the other I just want to keep him in my arms forever and never let him go! The surgery is inevitable so I guess let's just go get it over with and get back to 'normal' life!