Friday, August 31, 2007
Finally! Current mood: exhausted
After about a month of "we are contacting Stanford", we finally have a date! Macy Jane will be undergoing open heart surgery on Wednesday, September 12th. I suppose I should be really nervous and anxious since I know the exact day, but I am not. Right now I have a peaceful feeling. I am sure I will be a nervous wreck the closer it gets, maybe reality hasn't hit me yet.
The plans that we know are this. Me and Macy Jane will be leaving via a private medical jet headed for SanFrancisco then Palo Alto either the 8th or 9th of September. She is scheduled to have a heart cath on Monday the 10th and based off of what it shows will determine what is done in surgery. She may have to have a staged repair, it all depends on how big her collateral arteries have grown. Hopefully we will have an exact date that we are leaving by Monday, but we at least know next weekend we will be in sunny northern california!
I booked my parents and Steven's flight tonight. My sister will also be joining us out there. Just let me tell you that the airlines these days are selfish and RUDE. They no longer do medical hardship flights, discounted flights for deaths, or open ended return flights. I had to book Steve and my moms ticket for staying 2 months because it is $100 every time that we change the date to return. Hopefully we will only have to change it ONCE. That s why I did it for 2 months with the hope that we would only be out there for 1. However, everyone has flights and they will be there on the 8th even if me and Macy Jane do not leave until the 9th. That's ok....they can get the rental car, put our name on the list for the Ronald McDonald house, or other housing available, and get to know the area a little if we aren't out there first.
Please continue to keep MJ in your prayers. She started throwing up formula again. Remember she had surgery on the 19th of July where they wrapped her stomach around her esophogus and apparently it has stretched out again, which we knew it would in time, but not this soon! It isn't too bad yet.....she only spits a little up. Just pray that this will stop or remain just a little bit.
On the 12th if any of you are able to pray all day, PLEASE do so. Only prayer is going to bring my MJ through this. We will know more about what we are up against on Monday the 10th. I pray for good news. I just long to bring MJ home and rock her to sleep in her new rocking chair (that is still in the box I might add) and feed her a bottle and just lay her in her own bed. It's the simple things that I want. I am not asking for a baby that sleeps through the night or laughs and giggles and talks, I just want to be able to bring MJ home and let her experience an environment besides the hospital. She has been such a trooper and is a VERY happy baby, she smiles all of the time. She has started to hold on to her rattle, and still trying so hard to coo and laugh. Maybe she is trying too hard. Some have said that she is delayed because she isn't cooing yet and can't hold her head up 100%, but to those people I say......give her a break! For 3 weeks of her life she has been on a breathing machine, sedated and she has not been able to lay on her tummy to gain head control etc. since she was 3 weeks old. Just because some book or website says that she is supposed to be able to do this and that.....doesn't mean that MJ can or should at this point. Once she has her heart surgery behind her, I have no doubt that she will pick right up and move right along. She simply does not have the energy right now to do to much activity....she gets worn out and falls asleep.
I went to dinner with some girls that I work with tonight and it was so much fun. Just to get out of the hospital for 3 hours and talk about something other than medical stuff is such a nice break. We now have the light at the end of the tunnel, but at the same time, we are preparing to enter another tunnel that is very dark, but this too shall pass. God's will is going to be done no matter what and He will give me and my family the grace and strength to get through it all. No, it isn't easy for me to say that and there are some days that I don't think like that, but there is always someone there to bring me back to where I need to be....focused on God's will.
Well, it is after 1am and I need to get some sleep while Sleeping Beauty is asleep. Right now she is dreaming and she coos and makes noises in her sleep....it is so cute to listen to her. I have been playing the game memory on our laptop and I let it keep me up too late. It is a good stress reliever though and wears my brain OUT! haha.
I will post the info about the foundation that people can donate to this weekend. God has really blessed us so far and we have enough to cover Steve's flight and our bills for a month. Yay! That is one less thing to worry about.
I hope everyone is doing well. Thanks for the prayers and please please please do not stop them now! God has been so good to us and I firmly believe it is because of each and every one of you praying for us. Goodnight!!