Friday, October 19, 2007
Thursday Current mood:Blessed!
Ya'll I can't even put in to words how I am feeling right now. I received a box from one of my friends at work and in that little box were some VERY unexpected suprises. Janice put together some scrapbooking things for me to work on out here and enclosed a gift of clothes from one of my friends at work. Also, I opened up a cute envelope and was amazed at what I saw. Apparently, everyone at work donated gift cards to various places and sent them to us! I kid you not, there is over $900 in gift cards!!!!! Awesome cards to Target, Wal-Mart, Wal-Greens, Barnes and Noble, Borders, Bahama Breeze, Chilis, PF Changs, Mastercards!, STARBUCKS, applebees, and I just can't remember them all. I was SO shocked and just cried. Everyone has been so generous to us and I will never ever be able to say thank you enough. I hope everyone knows how much I appreciate everything that has been done for us and I do not take anything for granted. Also enclosed was a very cute homemade card that a lot of people that I work with signed. It was so nice to read all of the comments. It made me long to be back at work surrounded by people that I know love and care for all of us.
God has been so good to us. Over the past few weeks, I have had days where I have been extremely discouraged and just did not see God's purpose in what was going on with MJ. It seemed like she would take 2 steps forward and 5 steps backwards in a day's time period. We found out on Tuesday that the cardiologists here were going to push for Dr. Hanley to change out MJs shunt size because they couldn't manage her medically anymore, it was time for another surgical intervention.
On Wednesday morning, I was walking in to the hospital and Steve was texting me that they were there to take MJ to the OR. It was only 8:30 in the morning! I ran my butt in there, but thankfully I had 30 minutes to spend with her. She was awake and kicking and smiling and making funny faces at us. We said goodbye at 9am and I honestly just stopped in the hallway and broke down. That was the third time I had to take her to the OR doors in her life and kiss her goodbye, unknowing at the time what the outcome would be. It is so hard to hand your baby over for a life threatening surgery. Words just do not describe it. I hope none of you ever have to go through even a day of what we have been through and I wouldn't wish this on anyone, not even my worst enemy. (Well, maybe Maryanne at work........just kidding! )
We sat in the waiting room and tried to pass the time. Finally at 12 we received a call saying that they had about 45 minutes left in the OR and that Dr. Hanley would be out to talk with us soon. Well, at 12:35 the physician's assistant, Amy, came out and said "Well, I have some good news for you". I immediately thought that she was going to say surgery went well and her arteries look great. NOPE! She said that Dr. Hanley clipped her shunt to make it smaller and her pulmonary pressures went down to normal and he decided at that time that he wanted to go ahead and do her complete cardiac repair. My immediate reaction was "Are you serious?" She looked at me and said yes, I am serious. They are underway now and it will take about 4 more hours.
I teared up talking to her and me and my mom just started crying when she left. I was finally able to cry tears of joy! God heard our prayers that we say about a million times a day and all of the prayers of people all over the world for Macy Jane and finally, in HIS timing, He blessed my little girl. The receptionist came over to make sure that we were crying happy tears, not sad.
Dr. Hanley came out just before 4 and said that they were all done and that her surgery went well, really well. Better than he expected. He explained everything that he did and said that her numbers were some of the best that he had ever seen!!! We were shocked to say the least. We did not get to see MJ until about 5:30pm and I can't begin to describe to ya'll how she looked. She was PINK PINK PINK and she was warm. Her hands and legs had always been pretty cold due to limited blood flow, but now she looks just like any normal baby. No more blue baby!!!!! I am still amazed when I go in to see her, I never realized how blue she really was.
She was on the ventilator and has 2 chest tubes and pacing wires coming out of two different spots, and of course her chest incision. Inevitably she was on about 8 or 9 different drips. Today, they weaned the ventilator and extubated her around 3:30pm. I was amazed that they did it so fast, I mean she just had open heart surgery YESTERDAY!!!!! She is doing really well now. She is starting to swell a lot more, especially in her eyelids, but over the next few days that will be better. They are slowing weaning the amount of oxygen that she is on, but they have to do everything slowly as to not upset/aggravate all of the changes inside of her.
Her oxygen levels are 96-100% and it is so wierd because noone is freaking out about it. Before, when they were that high, we knew that she was getting way too much blood flow to her lungs and not her body. Not anymore! I am still trying to get used to that little minor detail.
It is just so amazing to me how optimistic everyone is out here. The doctors that we talked to all said that they think she is going to do very well long term and that I better watch out because she is one fiesty little girl! She is kicking and squirming and VERY hard to keep comfortable and in one spot. I guess it's the red hair
I called her cardiologist back home today and he was kind of shocked sounding. I wasn't sure if he was shocked because they did the complete repair or because things were going so well for her. I may have interpreted wrong, but it almost seemed like he was trying to bring me down to reality by pointing out the things that could go wrong etc etc. I told him about her orginally having too much blood flow to the lungs and he was like well that could be bad for now and good in the long run or good now and bad in the long run. I told him that Dr. Hanley and the cardiologists here said that that was a GOOD sign for long term, as I posted before. I kindly told him that and he sounded amazed. They don't see her type of defect too much in Memphis and if you don't deal with it every week like they do out here, diagnoses like this one seem hopeless. In fact, we weren't given too much hope by the doctors back home. It was all talk like "well, we hope the outcome is good.......but then they would list a number of things that could happen adversly." I just thank God for people like Dr. Hanley that are constantly researching and doing research on these special babies and finding ways to give them normal, long lives.
Now to reality. No, Macy Jane is not going to be better overnight and no we will not be home in the next couple of weeks. We will have to have echocardiograms of her heart every 3 months for about a year and then maybe yearly depending on how she is doing. We have to be careful to watch her right ventricle, to make sure that it is still functioning well. She will eventually outgrow the conduit that was placed in her heart that connects everything and will require additional open heart surgeries to replace that. That could be anywhere from 6 months to 13 years with an average being 2-5 years from repair. We also have to watch her new pulmonary arteries. They had to use a lot of patches which are made from a synthetic material and over time they could narrow and need expanding. There are many things that we will have to do to maintain her healthy status, but we can definately do that.
Also, she has pretty much been on a breathing machine for about 2 months of her life and of course the rest has been spent laying on her back in a hospital bed or being held. She has never been able to have her "Tummy Time" or to enjoy experiences where she will start to coo and make noises. She lost her head control after the last surgery, and she hasn't had a drop of milk in her mouth since she was 5 weeks old. She will require lots and lots of physical and occupational therapy and even still may be delayed, but none of that matters. I mean it does, but I don't care about that. She is here in this world with us and at least we have her here so that we can face all of these challenges, together as a family. Steve and I and our entire family are committed to giving Macy Jane everything we can support wise and will work with her on a daily basis to get her caught up to where she needs to be. It may take years, but with the Lord's help, we will make it. My favorite Bible verse has always been Philippians 4:13 which says " I can do all things through Christ which strengtheneth me" God has given us the patience, knowledge, peace, grace and strength to get through all of this and as long as we keep serving Him, He is not going to forsake us.
Will we ever see the purpose behind all of this? Maybe not, but I can tell you that there is one. God doesn't do anything without having a perfect plan in place and purpose behind it. Eventhough we don't always understand, He does and we rely in that. People all over ask me how in the world we are handling all of this and that they would be basketcases. Well, no. God gives us what we need in a time of need and that honestly has been what sustains us. Without having Him to rely on, I would be a basketcase and probably picking up some pretty bad habits. I can only thank Him for his blessings and His mercy. He has been so good to us and I can't wait to share with Macy Jane someday about how she is such a MIRACLE and mommy and daddy's pride and joy.
I thank everyone for all of the support. Whether it is emotionally, physically, or financially. Everything means so much to us, ya'll will never know how my heart feels. I only hope that I can be a blessing to others like ya'll have been to me.
Please continue to pray for Macy Jane. She has a lot of things to overcome still and one of those is being calm. She is very hard to control right now because she is in pain, and no doubt scared and worn out. She gets restless and it takes a lot of medicine to make her comfortable and not crying. Please pray that her body will heal properly and that her pain will be erased and that she will rest well without requiring a lot of meds. Also, we have the battle of attempting to feed her through her g-tube again. It didn't go so well over the last few weeks and the docs here are hoping it was because she wasn't getting enough blood flow to her intestines/stomach. We will see in a few days whether or not she still gags and retches and throws up. Please pray that she won't. If so, that could delay our time in coming home. Also please pray that infection would stay away. So far she hasn't gotten any infection in her blood, only in that one chest tube site. Amazing considering all that she has been through.
Once again, thank you all so much for everything. I will continue to update as time allows. Now that she is extubated I spend most of my time tending to her needs and trying to rest in between all of that. I know ya'll understand so no news is good news
Much love,
The Happiest Mommy On Earth