Wednesday, July 18, 2007
July 18th Update Current mood: scared
WoW! I am sorry it has taken me so long to update. Everytime I come to the computer room thugs are on the computers and no matter how long I sit here and wait and sigh a million times thinking they will get the point, they don't. So, I gave up. I have a PDA that I have been checking my messages with, but for some strange reason it will not let me post a blog or bulletin. For those that have sent me messages and I haven't replied, I promise I will---but not until this weekend sometime.
MJ has had some real uneventful days this week, thank the Lord! She is basically eating, sleeping, pottying, smiling and playing with me during her days. No more pain, thank God! She has the central line so she does not have to be stuck for labwork and she is being fed through the IV right now. She still has both the NGT that is going into her stomach and sucking out the gastric contents, and the NJT that is actually in her duodenum (small intestine) that they give her reglan & prilosec/sodium bicarb through. However, she is STILL continuing to go through the motions of throwing up, only the bile goes out of her NGT into the little bottle instead of her actually throwing it up. Noone seems to know why she is doing this, it could be because of both of the tubes stimulating her esophagus and stomach to contract like usual eventhough there isn't any food going in. She has stopped taking her pacifier all together Most parents would be happy about that, but it bothers me. That is the one comfort that Macy Jane has always had. Even when she was upset and got calmed down enough, she would take her pacifier. My theory on that is that she has two tubes that take up the majority of both of her nostrils and no doubt make her throat sore to the point that she doesn't want to swallow anymore. She drools now instead of swallowing her spit. She only swallows when she gets choked on it. I feel so bad for her because she used to be able to swallow without a problem. Hopefully after the surgery everything will get back to "normal" if there is a such thing.
Speaking of surgery. After waiting for 2 and 1/2 weeks, Macy Jane is finally going to have the Nissen Fundoplication and the G-tube placed. The surgery is tomorrow morning at ten (thursday July 19th). They say it is at ten, but the surgeon said that it may be eleven before they get started. So, PLEASE PLEASE PLEASE pray for her all morning long. Prayer and God's hand are the only things that are going to get her through this surgery. Dr. Langham talked with me this evening and said that the normal risk of death with this surgery is 1 or 2 out of 100, but Macy Jane's risk is MUCH higher because of her heart and the anesthesia that is required. My stomach is in knots and I feel like I am going to throw up. I pray for God to please touch my little blessing and heal her, but I also have to pray for His will to be done and for Him to give me the strength to get through all of this. So far, He has. The surgery should take about an hour and a half and then there is the recovery period. We know that she will spend the night in the ICU tomorrow night so that she can be watched extremely close.
The recovery time is about 2 weeks. The first 5-7 days she will be in some pain/discomfort that is usually eased with only Tylenol. They will start feeding her through her new G-tube usually post op day 2 and increase her feeds to her goal rate----VERY SLOWLY. Usually it takes 10 days to get to the goal. So, we will very likely be in the hospital at least 2 more weeks. LeBonheur is my second home, and I have finally accepted that. I have my little routine down now and the days fly by. I play with Macy Jane in her bed and tell her stories and rock her just as if she were at home. She needs some sense of normalcy and I do as well. She has been so much fun! She absolutely loves the mobile that is on the end of her bed and watches it almost all of the time that she is awake. She smiles when you talk to her and when you say "cocka-doodle-doo" or anything that rhymes with coo-goo-boo etc in a really high voice she opens her mouth and tries sooooo hard to coo. I think she will in a few more days. (maybe longer with the surgery) She tracks moving objects with her eyes and has pretty good head control for a baby that is pretty much laying on her back most of the time. Mom and I have been sitting her up and supporting her back and letting her practice holding her head up. She wobbles a bit sometimes, but for the most part she can hold it up and bring it back to normal position if it falls back or forward. It is very important to me to work with her and help her develop like most kids would, eventhough she is pretty much confined to a baby bed right now. I am determined.
Now, on to her weight. She is turning in to a little butter ball! She weighs 8 pounds 6 ounces as of last night! That is fantastic for her. I love weighing her now and get excited as I put her on the scales because every night it has increased! Praise the Lord. Her preemie clothes are getting a little snug now and the ones with legs do not fit because she is so long!
We still have not received the official word from Dr. Hanley in California. There was an e-mail sent by a doctor at Stanford to the cardiologist here that said that he thought Dr. Hanley was accepting the case, but we just have to wait for the official document to be sent to Dr. Joshi. The email did say that Dr. Hanley would probably want to do the repair at 4 months of age. That is less than 2 months away! MJ was 8 weeks on Monday!!! I pray that we are able to take her home and have a somewhat normal life between now and then. Just continue to pray that we will hear the official yes soon so that we can plan. I am obviously not going back to work for a long time yet, but I honestly don't care. MJ is my 1 priority and God will supply the money that we need when we need it. I can't worry about that anymore.
Well, I need to get back upstairs. I have been trying to spend as much time as possible with MJ today--and making her smile. She is such a beautiful and happy baby (and yes she still has red hair and bright blue eyes!!), even after all that she has been through. Please remember us in your prayers, especially tomorrow around ten! I will try to update more often, but I know ya'll understand.
I hope everyone is doing well!