Monday, July 30, 2007
Reflections Monday July 30th Current mood: optimistic
I was able to spend Saturday and Sunday night at home, with Steve. It felt so nice to be able to sleep in my own bed, but I have gotten so used to the couch in MJs room that my back is killing me now! It really was nice to get away though, but of course I couldn't wait to get up on Sunday and go see my little blessing.
I have been struggling the past few days with my outlook on things and started to have a bad attitude. However, last night I had a heart to heart talk with one of my best friends and then I called my sister at 11pm and talked with her for a LONG time. I knew that if I talked to these people that they would give me advice that maybe I wouldn't necessarily want to hear, but needed to, but at the same time they would help to get me back on the right track.
I have been getting discouraged because it seems like we have been taking 2 steps forward with Macy Jane and then 3 steps back. Perhaps it is because my faith started to waver a little bit. However, my perspective is back and I feel renewed and alive again and excited about all of the things that God has done and is going to do. He has shown His protection in so many ways in Macy Jane's life and the devil has been working overtime to mess things up and discourage me. I know that God has a purpose for MJ's life, if He didn't, she would not have survived in my womb. Each day that she is alive is simply a miracle. So many doctors did not think that she would make it through her stomach surgery, but she showed them! Except for being on a little bit of oxygen still, she is a trooper. It has been a slow process of feeding her through her g-tube and last Wednesday and Thursday she took a turn for the worst. Her white blood cell count was 29,000 & she was dropping her oxygen saturations quite frequently, breathing 120 times a minute and SO fussy. They got the doctors in there and they took care of her pronto & now her white blood cell count is down, her sats are up, and she is our happy baby again. God is good. The best news of all is that during that fiasco, they turned her feedings off (she is on a continous feed of breast milk through her tube) just to be safe because it is hard to tell if it is related to her heart, or from her GI system. However on Saturday they started the Pedialyte back at 5cc/hr and she did well with that. Yesterday they turned it up to 10cc/hr and she continued to do well with that, then today my mom sent me a message saying that they switched her to breastmilk at 10cc/hr and so far she is doing great. Her previous goal rate was 21cc/hr before she had surgery, so I am not sure what the goal is now since she is bigger etc.
If we can get her to her goal rate per hour on her feedings then maybe they will start weaning her oxygen levels and perhaps we can go home?? She has to prove that she is gaining weight every day before she will be able to go home. She can go home on oxygen, but not on the type that they have her on. We will see though. We are still probably a couple of weeks from going home and that is if everything goes smoothly without any more setbacks.
Yesterday I was giving her a bath and clipping her finger nails and noticed the tip of her left index finger and her nail bed was purple. Her finger nails always have a bluish tint because of her heart defect, but this was different. I pointed it out to the nurse and she said that they would watch it. Well, my mom text messaged me last night that her cardiologist came in and that they were doing ultrasounds of her heart, lungs, and her central line to make sure she did not have any blood clots or vegetation. Everything with that looked okay, but they consulted an Interventional Radiologist to come from Mississippi (apparently he is a specialist) to do a high tech ultrasound of all of her blood vessels in her left arm to make sure that there is not a blood clot, and if there is, what to do about it. Thank God that the doctors are on top of things and hopefully they will figure out what is going on with her finger, if anything serious at all.
Well, I need to jump in the shower and get back to the hospital to see my sweet baby. It makes my day to walk in the room and see her smile when she sees me! She is still trying so hard to make noises....she opens her mouth in the shape of the noise, but it just won't come out!!! I can't wait for the day that she giggles and coos up a storm.
My sister is checking today to see what type of fund that we can get started for Macy Jane's bills etc. Several people have mentioned doing fundraisers and that people want to donate money, but Steve and I want to have an account set up with someone other than us being able to withdraw money so that there isn't any speculation as to what we spend the donated money on. Everyone knows that California is an expensive place to be and as it looks right now I will not be able to return to work until after Macy Jane has her heart surgery. Our income has been cut in half and our bills are twice what they have been so you do the math I can't complain though, God has provided and we are not lacking for anything. I know that He will continue to meet our needs. Steve recently got a raise and thank the Lord he is able to work and has a decent paying job. I will update with more information as it becomes available to me. If anyone has any suggestions as to what we can do, I'm all ears. I hate feeling like a charity case, but this is a circumstance that is out of our control and we never could have saved up enough money to cover the expenses even if we knew about it a long time ago. Things will work out though. I keep wishing that we would inherit millions of dollars from some dead rich unknown relative.......haha.
Well, thanks for the prayers. Please pray specifically that 1 we will get the official letter from California with a plan for surgery 2 MJs finger will regain the circulation and the docs to figure out what is going on 3 that she will continue to tolerate her g-tube feedings as they increase the rate 4 that they will be able to wean her off of the oxygen 5 to continue to gain weight and lastly, that God will continue to give us peace and understanding and strength as we go about our daily lives. Thanks!!!