On this date exactly one year ago, Macy Jane was discharged from Lucille Packard Children's Hospital in Palo Alto. After 6 months in the hospital, I was finally able to bring our beautiful daughter HOME! A place/occurance that many long days and nights I thought would not ever happen. I cannot put in to words the feelings that I felt that night as I was finally able to hold my daughter without having someone's permission, change a diaper and actually throw it away right then, and snuggle with her in a real bed. She was finally all mine to take back to the Ronald McDonald House in preparation for our return flight to Memphis!! I openly admit that I was terrified of what to expect and do. At that point, I did not know what Macy Jane liked or what soothed her. She never really had the energy to play before and honestly she never really cried that much in the hospital. Now I was responsible for this little one 24/7. It is amazing to see how much Macy Jane has changed over the past year. Early this morning, I looked back at her past year in pictures and just cried. God has been so good to me and our family and my heart is overjoyed and in awe of all of His blessings. Who am I to deserve such a precious little girl that blesses my heart every day and always brings a smile to my face, even on the worst of days. I am so undeserving of such a beautiful gift, but am so thankful to God that He chose this little girl specifically for me. I could not imagine one single day without her and believe me, that thought crossed my mind daily for a long long time. While I am giving thanks, I might as well mention my awesome extended family! Today, we all went to my cousin's house in Dyersburg to celebrate together. This is the first year that the family has gotten together for Thanksgiving in several years (we always do Christmas), since Grandma Haggard passed. It's so nice to be close to family and be able to always count on excellent food and tons of laughter and conversation. Anyone that knows my fam knows that we are very open and no topic is barred from conversation, whether good or bad ,inappropriate for table talk or not, and that always makes our gatherings quite interesting. Two people that more than deserve mentioning are my parents. I do not think that I have met 2 people that were more made for each other and have such big hearts. They have helped me so much, especially in the last 18 months. There wasn't a day from the time MJ was born until the day we flew home to Memphis from California that one of parents wasn't with me and MJ. When she was at Lebonheur those 3 months, I could count on my dad coming to see us every night when he got off work and on the weekend and he always provided me with dinner unless someone else may have brought something. Mom would stay with me during the day to help pass the time or stay with MJ for a few hours when I needed those rare breaks from the hospital to destress. That very reason is why I am 100% comfortable with leaving Macy Jane with my parents at any time. They know how to care for her and her needs almost if not the same as I do. Mom watches MJ for me while I work and on those days where I need a few hours to myself. Not everyone has the priviledge of having their parents/grandparents to help them out and I'm very thankful that my parents are able to.My sister, Dee, well I don't even know how to describe her and our relationship. We have always been more close than me and my brother, probably because we have more in common. She is one of my best friends and someone that I could call no matter what time it was/is and talk to her about anything and know that she was always going to give me great Christian advice. She immediately flew home to be with me after I had my amniocentesis and was put on bedrest. As soon as the doctor told me something wasn't right, he left the room and gave me and Steve time to process the information. My first reaction was to tell Steve to get my parents on the phone and call my sister and ask her to please come to Memphis. I am typically a strong person, but the news that my child would be gravely ill almost sent me to a breaking point and I knew to get through that, I needed my family around me to help me. And help me they did. Dee took vacation from her job and was on a flight the next am. She continued to come home to be with me at various doctor's appointments, especially our first 4-d ultrasound where they checked MJ for a cleft lip. When MJ was born she was there and returned for weekly visits often. She flew to CA for Mj's first surgery and came back to celebrate Thanksgiving with us in CA. That doesn't even begin to scratch the surface of all that she has done for us, especially over the past year! There isn't a day that goes by that we do not communicate in some form. I am a lucky girl to have a sis that I get along with so well. To say thank you just doesn't quite show my gratitude. There are various other things that I am thankful for as well. Such as, I am an American and with that comes many rights and freedoms that people all over the world envy; I have a great job with decent pay; Steve also has a great job; we don't have to worry about how we are going to pay the bills or put groceries on the table and gas in the car; I have everything that I could possibly need; I have a few pretty awesome friends that I know I could count on no matter the situation; I finally found a great church to attend; and I have a husband and family that care about me. There isn't one thing in this world that I could even think of that I absolutely needed. How many people can say that, even in America? Many times, I take things for granted but I am glad that this day rolls around each year so that my thoughts and actions can be redirected in the right way. So, now that I have explained all of the blessings in my life, I have been thinking about ways that I can give back and perhaps help people that are in true need of it. One of the ways that I know I can help is to contribute to the Ronald McDonald House & Target House in Memphis. I know that when we stayed there in CA, they always needed or welcomed home cooked meals or goodies or just volunteering time. I don't really have lots of free time these days it seems like, but one thing I know that I could do is drop off some treats a few times a month. I am hoping to be able to start doing this sometime after the new year. I just want to give back in some way as my own personal way of saying thank you. So many people out there are in need....it's the least I can do. Well, that about sums it up. I was so happy today as I would think about how we celebrated last Thanksgiving. Steve, my dad, and my siblings flew out to California to join me, mom, and MJ for Thanksgiving. We cooked the meal at the RMH and ate it in Macy Jane's hospital room, with her right there beside us. It broke my heart to send all of them back to Memphis on a flight the next day knowing that we could not join them yet. It was SO worth the wait though. It completely changed who I am and how I think and act and hopefully made me a much less selfish person. Now, I realize all of the wonderful blessings in my life and thank God for every single one of them daily, not just on Thanksgiving. I hope that ya'll had a great Thanksgiving and didn't stuff yourselves til you were sick :) Now....on to Christmas!

I really should be in the bed right now. However, this afternoon I was so tired and my head was killing me that I decided to take a nap. My one hour nap turned in to a 4 hour nap. The alarm apparently was going off and I was aware of it because my phone was buried up underneath me. Don't worry (Dee), MJ wasn't roaming the house unsupervised...my mom offered to watch MJ so I could rest. Needless to say, if I take any kind of nap it screws me over at night. I won't sleep for a while yet. Oh-well. It is quiet, I'm the only one awake and its my only time during the day usually to unwind, straighten the house, and watch a little tv BY MYSELF. I have a myspace page as well that I used to blog on all of the time, especially the past 2 years. It was sort of like therapy for me. I prefer facebook these days for whatever reason. I miss blogging though so you may start seeing more notes from me. Most of the time, they are just me venting about something or ranting and raving over something, doing a random pointless survey, or killing time. (like tonight!) I don't expect or care if you read all of my notes. They are beneficial for me : ) Today I had to go to my ACLS class. I always dread these for some reason. Perhaps it is the very bad actors on the very long videos, the sitting in a classroom for 8 hours listening to a nurse teach you that you don't really care for, or the thought that what you are taught is pretty much not done in the ICU code setting. Who knows. Its a requirement for me if I want to be a float charge nurse or be a part of the MRT program so I suck it up every two years so I can continue on my merry way. One thing I was thinking about during the class was CPR outside of the hospital setting. I'm not one of the people that carries emergency resuscitation supplies with me. If I were say at Target and someone collapsed, would I do mouth to mouth? Yuck. Probably not? Not on a stranger. However, if it were my close friends and family I would in a heartbeat. Does that make me a horrible person? Thankfully, the new guidelines emphasize chest compressions without the rescue breaths (outside hospital setting etc) so my conscience will be clear if I ever encounter my "Annie" in the store. I am so excited about tomorrow and the next 5 days. I am going to drive to Knoxville to see one of my best friends, Sarah. We have some fun activities planned for our bambinos (she has a little boy Flynn, that is a few months younger than MJ....they have a prearranged wedding in about 20 years) such as a pumpkin patch etc. Hopefully I will get some decent pictures to post! We will hopefully have time to go to Pigeon Forge and Gatlinburg to do some Christmas shopping as well...I love it up there at this time of year, it is so pretty with the leaves changing colors and the cool crisp air. I've gotta go to the UT bookstore as well and get some Lady Volunteers stuff for me and my sis. We are big fans of the Lady Vols basketball team. I can't wait for the season to start up!!! Macy Jane still has a snotty nose and a cough, but shes back to her old self playing non stop and making every musical toy go off continuously and at the same time. She is doing ok with sleeping in her own bed all night. She slept with me in the guest room a few nights at the beginning of the week because she was so sick, but the past few nights she's slept in her bed all night, only waking up twice, but putting herself back to sleep after a few whimpers. She really is such a good baby. Even when she is sick and puking, she is still so sweet and loving....doesn't cry too much! Just like her mommy ; ) (dont choke)Oh yeah! Speaking of MJ. This was actually my point in writing tonight, I almost forgot it!! Macy Jane has been going to speech therapy, occupational therapy, and physical therapy on Tuesday & Thursday each week at Methodist North. She hates it for whatever reason. I don't know if it is because she knows it is a hospital, because they make her do things she doesn't want to, its outside her normal environment, or a combo of all 3 and then some. She usually screams and cries. We really wanted her in LeBonheur's LEAD program, but they were full and had a massive waiting list. Thankfully, our early interventionist was able to pull some strings and got Macy Jane speech therapy through LEAD. The best news is that they come to our house!! The first meeting was Wednesday. The lady walked in our door, took her shoes off, and immediately got down in the floor and was bubbly and cheerful. She acted like she had known us for years and we were best friends. This approach helped MJ so much. Macy Jane almost immediately crawled right to her and reached her arms out for Jennifer to pick her up! I was shocked. Happy, but shocked. She asked me a zillion questions about MJ and said she knew the perfect plan for Macy Jane. Plan? A therapist with a plan and goals? I was shocked. At North, they all pretty much just play with her and that really aggravated me. I understand play therapy is important, but the speech therapy was not addressing Macy Janes feeding issues at all, which is one of her biggest problems. They were more focused on her language skills and sign language. But, we had to do what we had to do at the time. Anyways, MJ's oral feeding aversion goes way beyond just not knowing that food is supposed to fill you up. It has to do with sensory issues mostly. Apparently there is a feeding program called SOS that starts at the very beginning of the eating process. Most people think eating consists of getting the food in your mouth, chewing, and swallowing. In kids like MJ it is a big huge 30+ something sensory process. This program starts at the beginning which is the smell of food and the sight of food. I made a list of the foods that MJ does tolerate on her plate and will taste. They were all pretty much neutral in color, with the exception of sweet potatoes & Cheese Puffs, and had smooth textures. The first step is to get Macy Jane to be comfortable with several different colors on her plate and different textures. Comfortable meaning she an tolerate them being on her plate without her immediately either ignoring it or throwing it on the floor. I know it sounds crazy, but its true. If she sees something like ham or turkey for instance, she will take her index finger and barely touch it, then make a god awful face and throw it on the floor. Interesting to me and baffling all at the same time.I am completely having to change MJ's feeding routine to start this new program. She typically eats by feeding pump through her g-tube at 10am, 4pm, 10pm, and 4am over a ten-twenty minute time period and does this while playing, sleeping, riding in the car, etc. Now, I have to sit her in her highchair at least 3 times a day at normal meal times. The first ten minutes, I am supposed to put a different variety of foods on her tray and play with them with her, and slowly add new foods, colors, textures. The next ten minutes, I am supposed to start her tube feedings. The goal is that she will start to associate highchair with food and mealtime and her belly getting full all while watching me eat. (that's not a problem ;) Because of this, I am changing the hours that I work so that the majority of the time I can be there for MJ's meals and really get started on this aspect until it is a normal routine for MJ and my mom can do it when I'm not here. For some reason, this is one thing that I would love to see MJ conquer. It doesn't embarass me that she has a g-tube or that she can't eat like most kids. Most people stare at me in the store when she is receiving a feeding and I just smile and keep walking. A few people have come up to me and asked me about it, which is what I would prefer rather than them gawking at her. it isn't about me, its about MJ. I know that once she is school age it would benefit her greatly to not have something for kids to make fun of her for or for her to even have to worry about being different than everyone else. Kids are mean these days and I can't protect her from everything and will not try to, but this is something that I can do to help her. If it means me losing sleep, working crazy hours, or having to give up some of my pleasures so I can be with her, I'll do it in a heartbeat. Keep your fingers crossed that this new program will work. It isn't an overnight solution to her aversion. Our goal, according to the ST, is for MJ to be eating 100% orally by the age of 3 and to be caught up with her language skills by the age of 4. Lots of work ahead of us, but I love a good challenge and will do my best to help her! I guess this note turned out to be a novel, which happens quite frequently. If you read the whole thing, kudos to you :) I hope that everyone has a great weekend. Much Love, Bethany Jane

A New Day Has Come
I started to write this note on Monday night as I sat at Macy Jane's bedside, but mommy duties took over and I decided to write when nothing was going on. I'm not sure if you are familiar with the Celine Dion song below, but all day Monday this song kept popping in to my head. I was waiting for so longFor a miracle to comeEveryone told me to be strongHold on and don't shed a tearThrough the darkness and good timesI knew I'd make it throughAnd the world thought I'd had it allBut I was waiting for youHush now I see a light in the skyOh it's almost blinding meI can't believe I've been touched by an angel with loveLet the rain come down and wash away my tearsLet it fill my soul and drown my fearsLet it shatter the walls for a new sunA new day has comeWhen it was dark now there's lightWhere there was pain now's there's joyWhere there was weakness I found my strengthAll in the eyes of a boy (change to girl :) Hush now I see a light in your eyesAll in the eyes of a boy (girl)I can't believe I've been touched by an angel with love Hush nowI cannot begin to describe to you the feelings that I had and still have since Monday. For those of you that may not have gotten the message from me or through the grapevine I will update you!! I received a call over a week ago from MJ's cardiologist. Apparently, the cardiology group at LeBonheur met on Wednesday and discussed Macy Jane's history/future/surgery. The new surgeon in town advised the group that a heart cath would be more beneficial for Macy Jane and would buy her more time so that she could be older, bigger, and stronger for her next surgery. I got the call to be at LeBonheur at 0630 this past Monday morning. To say that I was shocked would be an understatement. We were told back in July/August that a heart cath to place a stent in the conduit would not work and that open heart surgery was our only option and it needed to be done before flu season got in full swing. For the past few weeks, I had been trying to prepare myself as much as I could for all of the possibilities and outcomes of the surgery. I was ready. My bags were packed to stay at the hospital for weeks, if that is what I had to do for my little girl. The days before her procedure, I had such a peaceful feeling inside of me that I cannot describe. Most people have asked me how it is that I have and can handle all of the events of the past 2 years. Without a doubt, it is my faith in Christ that has brought me through each and every situation. I know that He is the one that comforts me and calms me down when nothing else can. Yes, handing my child over to someone and knowing that that could be the last time that I see her alive is very hard. On the other hand, I know that if she does not return to my arms after the procedure, she has been taken to the arms of Jesus, and His arms are much better than mine. On Monday, we finally got the call around 4 that the cath was finished. Macy Jane would be going to the ICU on the ventilator with a large IV in her leg. The doctor would talk with us later because he was at Macy Jane's bedside. Immediately, I began to think that the cath was not successful and that she would be going to the OR on Tuesday as originally planned. Dr. Lutterman came and found us in the waiting room and told us to come to her bedside for a chat. I was shocked when I walked in her room. There was my sweet baby laying in her crib...with no breathing tube down her throat, sucking on her pacifier, waving when she saw me, and crying if the nurse stopped patting MJs butt (that is classic Macy Jane....wanting to have her butt patted when she doesn't feel 100%) Dr. Lutterman was gracious enough to sit down with us and show us the films of MJs heart cath. It wasn't until about half way through the meeting that he finally told us that the cath was more successful than they thought it would be and that surgery had been cancelled, and we would be going home in the am! All I could do was thank God that He had His hand of protection on Macy Jane's life once again and for sparing her another surgery so close to the others. During the cath, they were able to place a Gortex covered stent in her conduit and open it to its original size, balloon some narrowed areas of her pulmonary arteries, and repair a psuedo-aneurysm in the right ventricle (not something that we knew was there until this heart cath). We were chatting with the doc about how noone gave us hope for Macy Jane in the beginning. Some thought we should take her home to pass, while others thought we should at least give her a chance at life. I carried her for 38 weeks and 5 days. Out of those weeks, I knew about MJ having complications the last 19 weeks. If I didn't want to give her a chance at life, I would have aborted her when we received the amniocentesis report. Like I said earlier, God chose Macy Jane specifically for me and who was I to decide that she didn't deserve life. Dr. Lutterman showed us the heart cath images from Mjs first cath in May 2007 compared to today. It was completely unbelieveable to me to see where she has come from in the past 16 months! You cannot tell me that there isn't a God that performs miracles. I am priviledged to be the mommy of a miracle every day and I would not trade my daughter for all of the "perfect" little girls in the world. She is trully the light of my life and my purpose at this point in my life. Since we came home, I feel like I am in a dream. Since the spring, I have had the black cloud of surgery looming over my head. Now, that cloud is gone! Yes, she will eventually have to have another surgery...maybe even a couple, but it could be years before that happens. For the first time since I was pregnant, I do not have that constant fear in the back of my mind of what's next or what could happen. I am choosing to live each day to the fullest and enjoying every possible minute that I can with MJ. The future plan for Macy Jane is this. She will have another echocardiogram in November at her follow up appointment and another heart cath towards the end of winter/the beginning of spring. The goal from this point on is to balloon the distal parts of her pulmonary arteries that up until now have not been ballooned due to inaccessability. The hope in doing this is that it will continue to drop the pressure in her right ventricle. Please continue to remember her in your prayers. She is living proof that prayers do indeed still get heard and answered. I will make a list of specific things to pray for for those of you that have asked me for that:1. That MJ would not get sick this winter with any respiratory infections.2. That MJ's heart would continue to pump effectively and that the pressure would remain at a tolerable level.3. For MJ to begin to transition more from tube feedings to oral feedings.4. For her overall development, she is catching up but is still considered behind. Hopefully I can upload some new photos of her from the past few weeks. I had to trim her hair a couple of inches a few days ago and now she definately doesn't look like a baby. She is turning in to such a pretty little toddler :) That's it for now, it is way past my bedtime. I am trying to get MJ to where she will sleep all night in her bed without these crying spells several times a night. If she so much as whimpers I wake up (baby monitor) and usually she doesn't go back to sleep unless I get up and pat her butt. However, 16 months later.....that is getting pretty old and I would really like to start sleeping through the night myself. Last night was the first night of the "cry it out" routine and she did pretty good. She woke up at 0530 screaming, but I let her whine for a few minutes and she put herself back to sleep. It's funny how my heart was racing the entire time and I felt sick to my stomach, but when there was silence, I was proud of her for going back to sleep on her own. She did the same thing during her nap today, so I'm hoping that a few more nights of this and she will sleep through the night. My fingers are crossed anyways :) I hope that everyone is doing well and I apologize if this is a repeat of info for some of you!!

Thursday, October 09, 2008
Quickie
A short and sweet update for everyone. Last Thursday, I received a call from MJ's cardiologist. He informed me that all of the cardiologists/surgeons at LeBonheur met the day before and decided that they were going to try to do a heart catheterization on Monday to see if they could open up the conduit and get good enough results with that to lower the pressures in the right ventricle. I was shocked as we were told this was not an option a few months ago...hence the open heart surgery scheduled for Tuesday. Of course we decided to go for it.
On Monday, MJ had another heart cath. During this cath, they were able to open up her conduit to its original size with a gortex covered stent. They also found that she had a pseudo-aneurysm in her right ventricle. They were able to repair that with something that I can't remember the name of right now. The pressures dropped to an acceptable level in the right ventricle so surgery was cancelled! Praise the Lord. Now, she will continue to have heart caths to open up the narrowed areas farther out in her arteries, more towards her lungs. They haven't been able to reach them yet because of the small conduit, but now that problem is fixed so we can begin therapy on the distal arteries, which hopefully will drop her pressures even more. Now, it could be 6 months to a few years before her next surgery. YAY!
We spent Monday night in the CVICU just so that she could be watched and she did great. She finally went to bed around 11pm and slept til 7. Pretty good considering narcotics usually make her wired. Shes done great since being home!! I still can't believe that we are at home and not at the hospital. I keep thinking I am dreaming and about to wake up. Oh how I dreaded surgery this close to the holidays and the delay it would cause in her development. She has come so far! She likes to stand up now, which is a huge blessing considering this is the girl that a few months ago would not put any weight on her feet. Now, we are trying to get the rest of her teeth in....she now has 12 teeth....in 4 months time. She hasn't been gaining very much weight lately because she gets really sick each time she cuts a tooth. She isn't losing though and isn't too far off of the 50th percentile.
I pretty much blocked the month of October off because of MJs surgery, but now that we can live normally I can't wait for the holidays. We are going to hopefully be able to make out trip to Knoxville in a few weeks so that we can go to the pumpkin patch with one of my best friends and her baby and then we are definately taking MJ to the Memphis Zoo Boo. I am still looking for her Halloween costume as well. I know what I want her to be, I'm just looking for the one I like :)
Well, that is all for now. I still have family in town until the weekend so I better get to bed so I can spend time with them!! Thanks for the prayers...they are working and it is amazing to see God's hand on Macy Jane's life.
Much Love,
Bethany

Wednesday, September 24, 2008
It’s been so long! Current mood: breezy
Wow, it has been a very long time since I have updated. I'm not even sure where to begin!
Macy Jane is doing very well. Each day she getting stronger, learning new things, and doing new things. She has been crawling like a big girl for a while now (instead of the army crawl!) and most recently she has been getting in to the kneeling position and pulling her self up on the furniture!! She has been involved in physical, speech, and occupational therapy for about a month and a half now. As I type this, she is crawling over to the end table and grabbing books off of it and "eating" them She loves books and being read to. She has also started to eat more things by mouth. She's still fed primarily by the g-tube, but one day we will get there.
The biggest news is that Macy Jane has to have another surgery. Soon. Like October 7th soon. It isn't because of a life threatening emergency situation. It's something that we knew would happen, just didn't know that it would happen this soon! She is going to have her conduit changed out via open heart surgery. We had the consultation with the surgeon last week and he said that if everything goes well with no complications, she should be in the hospital for a week. Please remember us in your prayers. It does not get any easier as she gets older. If anything, I am dreading this surgery more than the past two because we know what to expect this time around on top of the fact that MJ is older and definately a lot more strong. *sigh*
Everything else is going ok. I redecorated my living room and guest bath this past weekend. Kirkland's was having a massive sale and I got some things that I've had my eye on for a few weeks. When we bought our house, I bought 4 pictures for the living room just to put something on the walls until I found something I loved. Well, it's been almost 3 years and I finally finished it.
Life has been super busy for us. My brother came to live with us at the beginning of August. The doctors thought that he had lymphoma, but after a biopsy was performed it was determined that he does not have cancer after all! He went back to Missouri this morning. If it had been cancer, he was going to stay with us so that we could take care of him. I'm so thankful to God that he is cancer free MJ has therapy on Tuesday and Thursday and a lady comes to our house on Fridays for an hour to do some play therapy with MJ in the home environment and help us as parents with resources in the community etc. On top of that we both work full time and I am trying to work extra days to make up for the time that I take off with MJ's surgery. However, staying busy helps me de-stress.
Well, I guess that is all for now. I hope that ya'll are well.
Much Love,
Bethany

Friday, July 25, 2008
A brief update on Miss Priss Current mood: adventurous
We finally got the phone call from Macy Jane's cardiologist last Saturday night! MJ's conduit that was narrowed in April and restretched has once again become narrowed. She also has a few places in the distal parts of her pulmonary arteries that are narrowed again. The great news is that her heart's pumping capabilities is still excellent! We knew that the conduit would probably be narrowed again, it's just the nature of the beast with these things. However, towards the end of the conversation, Dr. Joshi informed me that Lebonheur recruited a world famous top-notch heart surgeon to join the staff in September. He told me that and told me that he highly recommends us having her next heart surgery right here in Memphis. The conduit change out, eventhough it is through open heart surgery, is a pretty common surgery...unlike her first operations, the Unifocalization. I told him that we have trusted his judgement calls from day one and if he could tell me that if it were his child he would let the new doctor operate on, then we would feel comfortable.
We have not made our minds up 100%, I would of course want to meet the new surgeon, and hopefully be able to talk with him. However, the flip side is this. We would have all of our support systems in Memphis and around the area, Steve wouldn't have to miss any work, I could work if I had to, we wouldn't have to deal with the strange culture of California, and basically it just boils down to this. Besides the fact that it is easier on us as MJ's parents, the most important thing is that I KNOW beyond a shadow of doubt that MJ would receive excellent care post-op at LeBonheur.
Most of you, if you read my blogs or talked with me in California, know that we had a terrible time with the way that MJ was cared for after her open heart surgeries in California. We had a handful of nurses that we grew attached to and one doctor besides Dr. Hanley that we liked and trusted. That isn't so great considering how many doctors and nurses took care of MJ. However, with the exception of a few nurses at LeBonheur, we have always liked and trusted the staff there. I know that when MJ comes out of the OR, Dr. Cabrera will take care of her like she were his own. I also know that the CVICU nurses and 7-west nurses are excellent. I have more peace about them taking care of my child than people across the country that are there for their $$ (some not all!)
I have been so busy since I talked with Dr. Joshi that I haven't researched this new doctor. The other option, which is still being discussed, is whether or not her conduit can be stented open during a heart cath. Dr. Joshi is discussing that with the heart cath docs next week. If so and it works, MJ might not have to have surgery for a year, hopefully. We are praying for that, but know that surgery is also very much an option. Either way, if it is a heart cath, that will be done in August or September, and surgery would be after september if we go that route.
Well, MJ is getting cranky so I am going to put her down. I will update on some more stuff later as time is available. Me, my mom, and MJ drove to Florida yesterday to help my sister and brother in law move into their first house. I will do anything to get back to Florida.....even if it involves moving
Please keep us and MJ's doctors in your prayers as we have dicisions to make. As always, we appreciate that. OH! MJ has been sitting up on her own for months now, but hasn't been able to go from laying down to sitting up by herself. However, over the past few days she has been sitting herself up! YAY!!!! Huge answer to prayer. She is also taking bites of food now....not huge amounts, but at least it is something!!!! She is crawling everywhere and in toeverything. She also starts therapy in2 weeks and we hope she will be walking by Christmas. I have my fingers crossed that that is a realistic goal Things have been going so well for her lately, I only pray that they continue that way!!
Much Love,
Bethany

Thursday, July 17, 2008
Just to clear some things up...... Current mood: lazy
It was brought to my attention today that my status updates on here seem to be directed at certain people on my friend's list. I would just like to clear that up. My status updates are not about people on here, unless I specifically state your name. If I have something not so nice to say about one of my friends on here, I wouldn't be stupid enough to post something so that that person could see it. (I will just tell Steve about it, ) If I post an update about something and you think that I am referring to you, odds are I am not. Contrary to what some may think, I don't look at every one of my friends page daily, weekly, or even monthly. It is pure coincidence if I say something that you feel is attacking you.
THAT'S all I am saying about that!
Today has been pretty lazy daisy. Both MJ and I slept off and on in the guest room together (I love having her as a snuggle bunny every once in a while!!) and then we spent the afternoon on the couch watching tv and sleeping. Steve took over for me while I ran to wal-greens for some meds and grabbed us some dinner. However, I think that Steve is catching what I have. I sound like I swallowed a bullfrog (croaking when I talk) and now he is starting to sound like that. I hope I am better by Friday so I can go to work!
Macy Jane is hanging in there. I am not sure what teeth she is cutting now, but she is in the middle of her throw-up marathon, which means there are some teeth somewhere in that mouth making their way to the surface. I think that I would almost rather her have diarrhea than this throwing up stuff. She is drooling like a bulldog and it is so thick.....which is what I think is making her sick to her tummy. However, she is sleeping really well next to me right now so maybe today was the last day. It was day 3 of it and it usually doesn't last more than 4. She is normally all over the place and doesn't want to be held a lot but today she didn't want to be put down. Good for me though because I get to hold her like she's a newborn...haha.
I called Dr. Joshi's office today for the MRI results. I didn't hear back from them, but hopefully no news is good news and he will call tomorrow telling me that she looks great and doesn't need any surgery or tests for 6 months. OH HOW NICE THAT WOULD BE! I am praying hard for those words.
Well, I need to get my butt in the bed in case MJ wakes up super early wanting to start the day. I hope that everyone is doing ok and enjoying their summer!!!!
Much Love,
Bethany

Wednesday, July 16, 2008
My little one is not a baby anymore.... Current mood: chipper
I think today I finally realized that Macy Jane is not a baby anymore, she is now a toddler. The past 13 months has flown by, even though the first 6 months seemed SO long when actually going through them. Today, we put her carseat in the forward facing position, which officially means that she is a big girl now. She's been over twenty pounds since her birthday in May, but I wanted to make sure with her pediatrician that it was ok to change it.
Speaking of which, today was her checkup. It was during her checkup that I realized that she isn't a baby. Every doctor's visit up until now she hasn't minded if doctor's take the stethescope out and listen, or shine that big light in her ears, or stick that wooden thing down her throat. However, today she screamed bloody murder at all of the above. YAY. Not only did we scream, but we threw everything around us in the floor. On purpose. A temper tantrum?! From my sweet little MJ? Absolutely. Even her cry is different. It is so "big girlish" sounding. She is also just lots of fun these days. It seems like she is a sponge soaking up every noise, light, object, etc. She trully doesn't miss much!
She has now graduated to GoodStart 2! Yippee for her. Even bigger news, she ate 3 or 4 bites of mashed potatoes the other night!!!!! Like she actually kept them on her tongue and swallowed them. NOTHING was on her chin or her shirt. GO MJ! We have been working very hard with her daily trying to get her to eat. I think she is more receptive now to things with tastes and textures being in her mouth than ever before. You parents out there that can just pop a bottle in to your babies mouths or a spoon of food don't know how fortunate you are I would give my right arm if MJ would like to eat orally. I know that she will eventually get there and I will be there every step of the way cheering her on.
Her hair has become quite the challenge lately. I need to just cut the back of it to get the frizzy ends off of it. The front is bizarre as well. I am trying to grow it all out so that it will be one length but her bangs are always in her eyes. She's always had enough hair for hairbows, but for the past few months she takes them out and eats them or throws them down. I tricked her and put the bow on the opposite side but after a few days she got smart to me. However, I guess I should be grateful that she has a head full of hair and isn't bald!!! Also, I would like to know what color it is finally going to be. There is one patch that is really blonde, then the rest of it still has a red tint to it and then on the top it is really red. At what point is it all going to blend?! I think she will always have a little red in her hair, at least I hope she does.
Steve and I went to Wal-Mart after MJ's appointment for our grocery run. It was actually pretty enjoyable! I think it is the first time that we all three had ever been to wal-mart. However, by the time we made it to the grocery side I made an interesting discovery. I asked Steve if he thought that we would be the type of parents that let our child get a toy every time she went to the store with us. He looked at me and laughed because in our buggy was a giant ball that Steve wants to teach her to roll to him, a smaller ball that she can actually pick up and throw, and a few other little toys. God help us! She doesn't even ask for them yet and we buy them. Oh-well......we have fun doing that sort of stuff for her and with her. Something I thought was funny. We went down the aisle with deoderants on it and I had her stroller a little close to the shelf. I wasn't paying attention and before I knew it I heard some grunting and the stinker was halfway out of the stroller picking up a can of aersol deoderant. Silly girl. One of these days she is going to pick up something and I am not going to notice it until the security people at the door ask me about it. It was the child......honest!
Well, me and mom and MJ (and maybe my brother) will be headed back to Florida next week for about a week. My sister bought the house and they close on Friday!!! We are going down to help them move and get things settled in. That should be a lot of fun. I wanted Steve to go but there are 3 shifts that he can work extra so he chose to stay here. The money will be nice I guess.....to send to bills. Bleh!
Well, it is almost midnight and I don't feel well. I have a sore throat and just feel lowsy. I think MJ has something as well because not only is she teething but she also has a snotty nose and her eyes are watery looking. Please say a prayer that we will be better tomorrow!!! No more doctors and hospitals please!!!
Much Love,
Bethany

Friday, July 11, 2008
Macy Jane’s MRI Current mood: tired
We are finally back at home....safe and sound. My Miracle Baby is sleeping soundly in her bed......so peaceful It has been a long day of sitting and waiting, but things went okay. Macy Jane has at least 30 puncture marks in her arms, legs, and neck. From what you may ask? IV starts! 30 freaking times!!!! I was so shocked when I saw her poor pin cushion of a body. I think 30 times is a bit rediculous, especially since she hasn't been stuck for an IV since her heart cath in April, where they got the IV on the first attempt?! And before that, she was stuck for labs one time since December. It was so many needle sticks that Dr. Joshi gave her a dose of IV antibiotics just to cover her. Thankfully, her reflux has gotten so much better that they were able to put her to sleep with the gas before they stuck her. She has no idea what happened to her. Also, they used Diprivan to sedate her instead of narcotics...thank you thank you thank you! She won't be high all night long now! When she has narcotics she doesn't sleep for what seems like days. Anyways.....
Dr. Joshi made a special trip to see us after the MRI was over. He gave us a preliminary result based off of a few pictures that he saw. However, he had over 3,000 different pictures to look at between now and Monday before we get the official word. So basically I am saying that what we were told today may change on Monday or more stuff will be added. Whew. Her heart function appears to be good, as in it is able to pump the blood efficiently to her body/organs. He also said that her conduit appeared to be okay, not narrowed, from the one angle that he saw it, but he would have to check the proximal images. Her right ventricle is still dilated, but he said that is 100% expected and normal for her diagnosis because she does not have a pulmonary valve yet. So, that part is all pretty good news. We were kind of shocked because he mentioned that this MRI may show us that she needs another heart cath, open heart, or nothing at all. We thought this MRI was to tell us how soon we were going to California and didn't think there were any other options. How wonderful it would be to hear news that she wouldnt have to undergo any more procedures for a while?! We are all praying earnestly for that. She has come so far developmentally and is actually eating a little bit by mouth and if she has surgery it will be steps backwards. However, we are not getting our hopes up. Whatever happens is God's will, no matter what.
Once again, I was reminded today of what an awesome little girl that I am so blessed with. (We are blessed with ) God has blessed us more than our share and I can't wait to see how He is going to use MJ. It is quite obvious to me that God had a specific plan for her life because we have almost lost her many times and technically she shouldn't be here based on her diagnosis. I am so undeserving but I am thankful that I am able to see our beautiful daughter everyday. She lights up my world and if I am ever feeling blue she is always able to cheer me up by smiling that beautiful smile or waving at me. Gosh....I love her! What a tough little girl she really is. To have been through so much and to be so happy.....still. I am trully amazed.
Well, MJ was intubated twice (put a breathing tube down her throat) because the first tube was too small. Because of that they gave her steriods to help with the swelling in her airway. Thankfully she seems to be fine. We will of course watch her closely tonight, but she played all afternoon like nothing happened. If you think of her, please say a prayer that she will sleep well tonight. Thats what she needs the most!
I am going to be busy for the next few days. I work tomorrow and Saturday, have church on Sunday (we are trying to find a new one.....always stressful for me!), work Monday, MJ has her pediatrician appointment on Tuesday. Finally on Wednesday I think I will take a break and enjoy life That is unless something else comes up!
Well, I am going to get things ready for work tomorrow. I hope everyone is doing well and thanks to those of you who prayed for us. Keep it up!
Much Love,
Bethany Jane

Wednesday, July 09, 2008
An overdue update! Current mood: blah
Things are going ok in the Wiles household. It has trully been a really busy summer so far and it doesn't look like it is slowing down anytime soon!! We went to Florida for 11 days and stayed on Pensacola Beach in an awesome beach house with my entire family. It was gorgeous every day except for one. MJ seemed to like the water, alot. At first we sat her in the sand and let the tide come up on her....she wasn't too sure what to think about that We bought a kiddie froggie pool and put some water in it for her under the giant umbrella so that she wouldn't get too hot and burned. She loved it!
While we were there, my sister and brother-in-law found a house to buy! The market in Florida sucks right now because of the hurricanes etc. so I am glad that they could find a house! They are hoping to close next Friday, if they do, me and my mom and MJ will head back down there to help them move and get settled in.....and maybe go to the beach again That is if I can switch my days at work around.
MJ's health seems to be doing ok. She is getting in to everything and showing me her personality more and more each day. She has to go to LeBonheur in the morning for a cardiac MRI. The MRI itself is not a big deal, but they have to give her general anesthesia and put her on the ventilator to control her breathing and hold her breath for her in certain parts of the test. The results of this test will show us how much time we have until we need to go to California again. I have noticed that she breaths a little harder at times, but then again she is crawling around a lot more as well and using more energy. She is still fed by G-tube (lots of people have been asking me about that lately?!) but in the past week or so, she has actually let me put some baby food in her mouth without her immediately trying to throw it up. She also swallowed some gerber graduate puffs!! She coughed, but at least she didnt puke them up!!! She STILL isn't in any therapy. I have been calling TEIS every single day and leaving her coordinator messages. They have until Tuesday to call me back or else I am leaving it up to her pediatrician to get her in therapy. I am so aggravated because it has been 6 freaking months since I called them to refer MJ. That is entirely too long! I hate the state of Tennessee when it comes to having a sick child. The just SUCK.
If MJ's health remains good, Steve and I are going on a cruise in January with some friends from work. We had planned on taking a cruise each year to celebrate our anniversary and of course last year didn't happen, but hopefully Jan 09 we will be gone! I don't know how I will handle being away from MJ for 7 days, but we need a vacation together....away from all of the stresses of life.
Hopefully I will be able to upload some pictures of our vacation and the 4th on here. Today I am busy cleaning the house top to bottom. BTW.....just have to mention this and see if it is crazy to anyone else but me. Apparently yesterday I left my wallet at Target. I checked out and paid so I must have either left it at the register or it fell out of MJ's diaer bag in the buggy. Well, I didn't even realize it until they called today letting me know that they found it. So, I told the girl that Steve was in town today running errands and that I would like for him to pick it up and she proceeded to tell me that she couldn't give it to him. Only me. I told her that I had to have my wallet tomorrow because it has MJ's insurance cards in it and that I couldn't get to Target today because Steve has the car seat and was like 5 minutes from target. She continued to say that she couldn't give it to anyone else. I offered to tell her everything that was in the wallet, my SS number (since that card was in there), I even told her my driver's license number?!?! AND They called my house number.......obviously I am who I say I am if I can rattle all of that information off in twenty seconds. I was so frustrated with that stupid woman. Finally she talked it over with another manager and decided that Steve could pick it up if he could show ID that he was who he said he was and prove that we live at the same address. For crying out loud! This incident and their return policy are pretty close to making me not want to shop there.....but I love their stuff! Grrrr.
Please, if you think of it, say a prayer for MJ tomorrow. I know that she will do just fine. The only thing that will stop the MRI is her throwing up. Her reflux has gotten so much better over the past 2 months. However, whenever she is cutting teeth (which is like every other week) she will throw up for 3-4 days and then be fine for a week and a half with no throw ups. Well, today she threw up once and usually that means that tomorrow she will start the non-stop throwing up. I sure hope not because I have been dreading this test and just want to get it over and done! Say a little prayer
Well, the dishwasher is done, so I need to get the kitchen finished up! I hope everyone is doing well.
Much Love,
Bethany

Saturday, June 21, 2008
Vacation! Current mood: quiet
We left for Pensacola yesterday at 11am and finally arrived at 7pm. It took a little longer than usual since we stopped longer than we normally would. The days of getting in the car and stopping once for gas & potty are over now that we have a child MJ did really really well in the car, if I must say so myself. She got cranky one time when she was SO tired and didn't want to just give in and fall asleep, little stinker! Anyways, it feels so good to be down here with my family knowing that we don't have a thing that we HAVE to do for the next 10 days. YIPPEE!
Tonight we all loaded up and went to look at a house my bro-in-law found on the net. (they have been house hunting for about a year now!) Well, they didn't like what they saw but continued to drive around the town. They happened to see a realtor putting up a for sale sign in a neighborhood and she actually showed them around the house, since it was vacant. It is a really nice house and would be perfect for them and is the perfect price! They are discussing it tonight and may put in an offer tomorrow! SO EXCITING for them! Their first house It is a great starter home with 1800+ square feet and a nice yard. I really hope that it works out for them, they have been looking for so long. It is hard to find a house down here because of the cost of house insurance if it isn't built in the past 4 years. I wish we could transplant our house down here.....we could make a nice chunk of change. *sigh*
We will be coming home on July 1st, but if they get the house we may be coming back sometime in July to help them move
Update on MJ.....she is doing really really well! Learning new things every day and developing her personality....and her temper! I love it though. I have been teary lately when I think about what she has been through. I thought it was kind of ironic on June 19th. We drove to Florida on that day. One year ago, June 19th, 2007 MJ was re-admitted to Lebonheur and that marked the beginning of her hospital stay for 6 months straight. A year ago we didn't know if we would be going on vacation for a long long time and if we ever got to go, would we have our precious daughter with us? The 19th was a joyous day for me, but I couldn't help but cry. God has been so good, and I am so undeserving. Even since we have been home I have not gone to church like I should, but I will start. God has been so gracious and awesome in my life, there is a reason in all of this.
Well, I stayed with MJ while everyone went to eat seafood. I hate to disturb her sleep schedule and she went to sleep between 7 and 8, not exactly the time to be taking her out to a restaurant. I want a happy baby tomorrow, not a crabby baby I can't wait to see her reaction to the beach! I think she will like it, but I have lots of diversional activities for her, just in case she doesn't!
I am going to go check on her and give her some mommy sugars. Those are the best I hope everyone is doing well!

Sunday, June 15, 2008
Wow! Current mood: frisky
I just looked back to see when I last blogged, so that I could fill everyone in on what's been going on in our life since the last post. I was shocked to see that it had been a month and a half! Since, April 30th to be exact. That could only mean one thing, life has been going well and we have been busy.
I started back to work the second week in May! I am very thankful that my boss is understanding with my schedule and allows me to be flexible with it. I didn't realize how much I missed working until I actually went back. Don't get me wrong, I am so thankful that we were financially able to allow me to stay at home MJ's first year, but the timing was perfect for me to return. I am not usually one to "stay-at-home" and be Suzy Homemaker. I start to get a little cabin fever after a while. Plus, returning to work not only means that we can finally buy some I wants instead of I need's, but it also helps me to see that no matter what is going on in my world, there is ALWAYS someone that is worse off than me. I believe that God called me to be a nurse and when I can't do it, I miss it. It is also good to get out of the house and have time with friends. Yes, I know that I was doing some nursing things with MJ, but I don't consider being a mommy and taking care of my baby as being a nurse.
MJ stays with my mom mostly when I am working, unless Steve is off that day. It is wonderful that mom can do that for us and MJ loves going over there. They have a dog, Sammy, and she loves to play with him. It does her good to go different places and explore the world! We have started taking her to the zoo. We went ahead and bought a membership because each admission is so dang expensive! Several of our friends go all of the time so we try to make play dates out of it. She seems to enjoy it!!
Hmmm.....what else. She had a wonderful birthday! I don't know exactly but there was probably 40 or so people that showed up. It was an awesome celebration of her life!! It feels like she should be 2 or 3 with the amount of stuff that she went through, but alas, she is still my baby However, my baby is turning in to a big girl! She now has her top two teeth and is trying to cut several more. However, we don't have any on the bottom yet!! She has been sitting up for probably close to two months now on her own and she does the military crawl all over the place. Occasionally she gets off of her tummy to crawl like a big girl, but she doesn't do it all of the time. She manages to get in to everything! Luckily, I don't like things cluttered in my house so I don't have too much baby proofing to do. She also said her first word a few weeks before her birthday. It was "MaMa!" She says it all of the time and it melts my heart EVERYTIME! She babbles quite a bit, which is awesome considering she didn't discover her voice until February!!!! She has mastered waving bye bye and is imitating things that we do.
As for her health: she hasn't been "sick" at all, PTL! However, each time that she cuts a tooth, she has throwing up days. Usually they last for 3 days and then she will not throw up again until her teeth are acting up again. The break from throwing up has been nice and when she does throw up, it makes me even more grateful for the days that she doesn't!! Hopefully she is starting to outgrow this reflux crap. Grrr! She is supposed to have a sedated MRI on July 10th to evaluate how her heart and lungs are doing. They will send that information to California and get a date for her next surgery. I am hoping it will be late August or September before we have to go to California. (or longer!!) Her cardiologist did tell us that she will more than likely need to have this surgery and maybe one or two more surgeries before she is an adult (that doesn't count valve replacement surgeries, if she needs them down the road) She will continue to need heart caths every 6 months to a year. We can deal with all of that!
We are leaving for Florida on Thursday! We are staying with my sister the first two days and then we are staying at our beach house from Saturday until the next Saturday, then back to Dee's until the following Tuesday. Almost 2 weeks away from home, I can't wait We got MJ some adorable bathing suits and I can't wait to see her in them. I am curious to see how she will react to the beach. My sis has a giant umbrella that we are going to put MJ under so that she doesn't fry......thanks to her red hair and fair skin
Well, I guess that is an update for now. I hope everyone is doing well & I will try to be more prompt with my updates!! After Florida, that is!

Everyone that knows MJ knows that she has a Mickey Button (g-tube) that we use to feed her with. On occasion, this button will leak whatever I have fed her or whatever is in her stomach. When this happens, I know to check the fluid level in the balloon and usually have to put more water in it. Today, however...I don't have a clue what's wrong with it and I am aggravated and frustrated! I fed her 4 ounces this morning since she has been throwing up and 5 minutes later her shirt was so wet it was dripping the milk on the floor. I thought for sure the balloon had ruptured so I checked it and it hadn't. I put more water in the balloon hoping that would help and it didn't. I got the emergency spare out of the closet and changed the entire thing out (just like putting in an earring). It is still leaking. So, I called her surgeon that did the G-tube and is responsible for upsizing it. As my luck would have it, he only sees patients on Tuesday. However, Lebonheur has a g-tube clinic that I never knew anything about until today and they will see her tomorrow afternoon and hopefully give me a prescription for a larger diameter tube-which is the only thing left that could be the problem. They do not keep Mickey buttons there apparently so I will have to get the prescription for it and fax it to our supplier and wait for them to deliver it.....on TUESDAY. Now, would someone please tell me how I am supposed to feed her between now and Tuesday? She is still very sick and I am trying my best to keep her hydrated, but that is next to impossible when everything just runs back out. Why is it that there are no backup plans for this type of thing? I realize that not many kids have to have feeding tubes but it is very frustrating for the select few that do and can't get help immediately. I know that I am just tired and cranky and quite possibly blowing this out of proportion but I am so aggravated right now. If any of you ped nurses that are my friends have any suggestions for me, I'm all ears. I am about to head to Wal-Greens and get some rice cereal to try and thicken her milk and pedialyte in hopes that not as much will leak out. That is my last hope!! To those that have been messaging me about how MJ is doing: her labored breathinig is much better today, although she is still breathing fast compared to her normal. At least she isn't using her abdominal muscles today. Her cough is junky and her nose snotty, and she has been throwing up since 6am.....oh the joys : ) She really does look better than when I got off work yesterday morning. Thanks for the prayers and keep them coming. Pray for sleep....and lots of it so I don't lose it ;)

Wednesday, April 30, 2008
California Current mood: ecstatic
I just got off the phone with an advisor in California and got the long awaited answer on our financial assistance application. Let me back up and explain what happened to make us apply for that.
The physician bills for September '07 were not paid by our former insurance company when they should have been so we were left with $60,000 in unpaid bills. Thankfully, MediCal (a program she was on in CA since she was in the hospital 30+ days out there) paid for all but $15,000 +. We got a bill a few weeks ago asking for payment in full by April 15th. I laughed and then cried my heart out when I got the bill.
However, because the average income in CA is quite a bit higher than in TN for a family of 3, we qualified for 100% assistance, by the grace of God!! If I had returned to work any sooner, we would not have qualified!!! So as of today, we owe California ZERO dollards, praise the Lord!!!
This couldn't come at a better time. I went to Baptist yesterday and filled out an application to get my old job back and will hopefully start next week or the week after. I also found out I will be making more money than when I left, always a good thing God has been SO good to us, I am just in awe.
Thanks to those that have been praying for us during all of this. It has been quite stressful getting these bills in the mail each week and wondering how we would pay for them. God is in control and even though we are in the upper middle class, according to the stupid government, we didn't have to work the system (aka get a divorce and go on Tenncare) in order to pay our bills. I am So thankful that we didnt have to do that! (no offense to those parents with chronically ill children that did have to get a divorce just so they could have health care coverage for the child) It is sad that it has come to that in America, but it has.
Anyways, I am off to play with my baby girl who is trying so dang hard to crawl, it is hilarious to watch!!!
Much Love,
Bethany

Friday, April 18, 2008
Busy Little Bee Current mood: chipper
That is what we have been, busy little bee's! This is going to be quick since MJ is in the living room watching cartoons in her bouncy, unsupervised
My weigh-in yesterday went really well! I lost 5.2 pounds last week, which is a lot, but I needed that number to make up for the last 2 dismal weeks. I am back on track to have 100 pounds gone by January!! To date, I have lost almost 40 pounds, 39.something to be exact. It has taken me 14 weeks to do it, but that is okay with me! I am finally down to where I have less than 100 pounds to lose (94 something). That sounds so much better than 133.8 pounds to lose!! I am still not liking what I see in the mirror and it is hard for me to be able to tell a difference, but my clothes fit great I am almost back to what I was when we got married, which is still pretty big, but not as big as I was 39+ pounds ago! I will keep forging ahead and enjoying my new energy levels and wardrobe.
MJ's birthday is in one month and a few days. It dawned on me yesterday that I need to order the invitations and get them in the mail. I did a brainstorm guest list last night and it came to 26 people definately coming and 16 possible's and I am sure I forgot some people. This party is a celebration of Macy Jane's life and yes it is a birthday party, but it is also going to be a "people who want to see her but haven't been able to yet" party, a delayed welcome home party. She is well enough and RSV season is over, so it is time for her to meet all of the precious people that were her biggest fans and prayer warriors I can't wait!! If any of my blog fans would like to be added to the list, please just message me with your address. We will also be having lunch etc. Yay!
Someone asked me if we felt the earthquake last night. Nope, didn't feel it! I am not even sure if Memphis felt it since I haven't watched the news this morning.
Well, it is time for MJ's meds and my breakfast and coffee. I hope that everyone is doing well. Please continue to pray for Richie and Andrea, the parents of Miles, who is now walking the streets of heaven with Jesus, painfree. I know that they would appreciate it.
Much Love,
Bethany

Thursday, April 17, 2008
Lazy Current mood: blessed
The subject lazy is exactly what I was today. Miss Macy Jane woke me up at 0730 (for the first time since we have been home) ready to start her day. She usually sleeps anywhere from 8:30-10am, but I have noticed her sleeping patterns changing a lot lately. That is okay though because I was in the bed by 10:30 last night, shocker!
We had a great day! For the first time ever, I sat in the living room with her and we watched cartoons together until about 11. She just laughed and kicked and tried to talk to all of the cartoon characters, it was pretty cute. I had no idea she liked tv this much! When we were at LPCH, she watched the Baby Einstein channel there, but not so much since being at home Perhaps we will start watching them a few days a week. I just don't want her becoming addicted to TV and be a couch tator. It was nice to be able to leave the room and she didn't even notice!
She played in her jumperoo for a few hours and it sent me down memory lane. It wasn't but just 3-4 months ago that she wasn't tall enough to touch her toes to the floor, even on the lowest setting, and she would get tired of holding her head up after a few minutes. And to try to get her to put weight on her legs was out of the question! However, NOW we have adjusted the seat 3 times now and she is still flatfooted in it. She LOVES to jump up and down and stand in the jumpie! It took her a while to figure out that she could spin herself in it, but she has that mastered now.
It never ceases to amaze me how far she has come in the 4 and 1/2 months that we have been home! I am trully thankful to the Lord for all of His blessings on her and give Him all of the glory for it. It won't be too long before she says dada. A few days ago she started saying "da" sounds, which is a huge step for her. Someday she will be talking my ear off No, she still isn't able to sit up 100% by herself for extended periods of time, but she can sit up (when she wants to) for about 30 seconds. She doesn't need to crawl, lol, she gets where she needs to go by rolling. Today, she discovered the fireplace and the key that turns the gas on for it. That became her chew toy. She is starting to get up on her knees though, but her belly is still on the floor. She has also started this new thing of planting her feet on the ground when she is on her back and raising her butt up off of the ground. She makes me laugh.
We found out that she DID qualify for the Tenneessee Early Intervention Services. She was barely eligible according to the state's developmental delay standards, which is a good thing I guess, but thank the Lord that she will recieve therapy to help her get caught up the rest of the way! We are supposed to find out in the next couple of weeks when the therapy will be and where. She was 40% delayed in adaptive skills, which is her ability to care for herself (duh she doesn't hold a bottle to eat etc.....she doesn't eat with her mouth. She can put the bottle and food in her mouth, she doesn't want to!) and 25% in her speech/communication. Not too bad! I am excited to see what the future has in store for our little butterball.
I know that some people get all wrapped up in what and when their babies were able to do something or when they first got their teeth etc. Some people get upset when they don't have a child that they feel they can brag on for being first to do this or that. To me, and this is just my opinion, none of that stuff matters. When our children are in school, noone is going to ask you "oh when did she crawl or say her first word etc." For some reason, some parents have to feel validated when their children do something superb and when that doesn't happen, the parents always feel that it is their fault and that something is wrong with their child. I look at Macy Jane and am just thankful that she is alive and blessing me and my loved ones with her presence on this earth. I don't care if she is 2 before she is walking, she will eventually do it and I do not feel bad that I can't "brag" on her for doing things early. It drives me crazy when parents get in to a (for lack of a better phrase) pissing contest over what their children are able to do. I think by saying that stuff, it puts more pressure on the child to be perfect so mommy and daddy will be pleased, not necessarily because the child wants to do it.
Anyways, that's all about that. Don't get me wrong, I love to hear about what my friend's children are doing and that they are hitting their milestones etc. I do not like hearing about the overboard suped up show-off updates or the my child doesn't do this and I wish he did so I could brag on him/her. Bleh!
MJ had her appointment with her pediatrician last Friday. She has now graduated to the 50th percentile range for her weight and she is between 25-50% for her height. Go figure with the heigth, considering me and Steve are short little shrimps! This makes me soooo happy because in December she wasn't even on the growth charts! God is good We lowered her down to 22 cal/oz formula, which is almost the normal! She needs to stay plump and sassy for her next open heart surgery and it wouldn't hurt my feelings at all for her to have a little bit of a fat reserve so that she doesn't get scrawny again. Somehow, I don't see that happening!!! (getting scrawny) She is finally caught up on her shots and we don't go back to see him until July! YAY!
Well, I need to get in the bed. Weigh in is in the am and tomorrow is my mom's birthday as well. The last 2 weeks have sucked in the weight loss department. I am still losing, just not as much. However, I think I did better this week I hope so anyways. I just rememberd that I didn't update my ticker last week either. Might as well wait until tomorrow now.
Please remember Richie and Andrea in your prayers. They have a sweet angel, Miles, watching over them now. Praise the Lord that he is in a place where there is no more suffering and tears. I know that his parents are heartbroken, but I also know that the Lord will give them the peace and comfort that they need to get through this unfortunate time in their lives.
Much Love,
Bethany Jane

Thursday, April 10, 2008
Wonderful Wednesday Current mood: confident
Happy Wednesday ya’ll! It actually turned out to be a pretty day here in good ole Brighton. Macy Jane was tired of playing with all of her inside toys and just had that cabin fever look about her, so I put her in the stroller and went for a little mommy-daughter walk. I have realized that this cutie patootie loves to be outdoors! She just laughed and cooed/babbled to her heart’s content. There were lots of birds out and she had the best time watching them and listening to their noises. Her eyes would get really big then she would have the biggest grin She is too precious.
Yesterday, she was in her high chair while I made some icing. I gave her 5 or 6 toys to play with and the stinker threw every one of them in the floor, repeatedly. After a few times of picking them up, I had had enough and popped her hand when she did it and scolded her. She looked up at me like what are YOU doing crazy woman, then her eyes lit up and she gave me the biggest "I am so cute you aren’t going to spank me" grin. I melted and tried so hard not to laugh because I know how important discipline is. Alas, I bit my lip and that didn’t help and I just busted out laughing. Maybe another day when she just isn’t so cute
She ended up falling asleep in her stroller today so I went through the garage to our back porch and parked the stroller. I laid in the hammock and read my book for a long time and that was so nice. I look forward to my "me" time each day. Some days I do not get it, but here lately Steve has been so great about helping me around the house when he gets off work that I actually have a little time to myself, like right now.
I looked to my left a few minutes ago and saw something that said "Season of Thanks". It made me think about a few things in my life that I am so thankful for. It seems that through all of things that have happened in my life recently that I am thankful every single day and have learned that life is short and to cherish every single minute. There have been a few of my "so called myspace friends" in the past few days, weeks and months that have done everything that they could to make me mad, annoy me, or just plain old try to out do me in some things. One person in particular went as far as to copy many of the things that I say and/or do, she would blog about the same things etc. It dawned on me today how immature and insecure these people are and they just are NOT worth my time and energy. I have too many true friends and my awesome family and these few people that intentionally do things to hurt, anger, annoy etc. are no longer going to get to me. I will be the better person and rise up from the muck!
Now, on to more pleasant things.....like my cake! My first cake is officially done and it looks ok. I have lots of room for improvement, what beginner doesn’t?! However, it doesn’t look as bad as I thought it would. I made some pictures of it and one day I will probably look back at it and say what an awful cake it is Oh-well, today though, it made me smile to know that I accomplished it all by myself.
Well, Steve is in bed reading and I would like to be in bed by midnight so I need to go and clean the kitchen up. FUN! Tomorrow is weigh-in day. Last week stunk....I only lost 0.6 pounds. That week, I was not in the mood to eat and I went to bed every night with an average of 10 points left. I now know that I HAVE to eat slightly below, at, or slightly above my target daily points in order to keep my metabolism going in high great. My fingers are crossed, I am hoping for 3-5 pounds.....to make up for last week and this week. We shall see.
Thanks for tuning in tonight. To my sister, thanks for the blog comment last night...you hit the nail on the head and I like it when you leave me comments, hint hint
Much Love,
Betania

Wednesday, April 09, 2008
Just Another Terrific Tuesday! Current mood: blissful
Notice my colors tonight?! For those of you who do not follow college sports, these colors are the colors of the Tennessee Lady Volunteers. They won their 8th National Championship tonight and played an OUTSTANDING basketball game. Pat Summit is without a doubt, THE all time best coach in both men’s and women’s college basketball. She has a way of motivating her players like no other coach can, yet she loves them like they were her own kids. Since I was a kid I have been a supporter of the Lady Vols along with my sister and my dad and I must say that it never gets old seeing them win. When you are the best, that is just what you do I love it when people say that I don’t know what I am talking about when it comes to basketball. I have been watching it since I was a kid and played on my high school team from 7-12th grade, yet I don’t know what I am talking about. It just makes me chuckle to myself.
Alrighty, my eyes are hurting now. Today has been such a great day! I love it when it is warm and sunny outside. I had the first part of the day all to myself, since my mom came up and watched MJ for me. I went to my cake decorating class for 2 hours, and I absolutely loved it. I can’t wait until next week! Afterwards, I treated myself to Starbuck’s and had a Chai Tea Latte, which is one of the few things that I can have from there on Weight Watchers. Speaking of weight watchers, I have now put away yet another size of clothing to be sold in our rummage sale. I am not keeping any of my former sizes (except for one pair of jeans in their biggest size for comparison later on), because in the back of my mind they are there and if I ever starting gaining weight back it would be a lot easier to stop myself knowing that I would have to buy a whole new wardrobe. I am so thrilled with my progress so far and can’t wait to meet my goal of 133.8 pounds forever gone in February ’09. I am almost 1/3 of the way there, I think I can, I think I can, I KNOW I can
I spent the rest of the afternoon entertaining MJ and making up batches of buttercream icing (boy I am thankful for a Kitchen Aid Professional Mixer!). I also attempted baking, splitting in half, leveling, and icing (smooth icing) my first cake. (first time the correct way anyhow!!) Tomorrow I am going to attempt to decorate the cake, if time allows. We weren’t taught that today, but since I made a cake I am going to practice on it, then send it to my parents house because that cake and icing is SO not weight friendly.
The rest of this week is going to be so busy! Tomorrow, my friend Chris and his wife are headed to the hospital so that she can be induced to have Gray and Ada. I am SO happy for them. They have been trying to have children for many many years and this was their last attempt (2nd IVF) and they are blessed with TWINS. Congrats to them. Thursday, Steve and I both have doctor’s appointments, then I am going out with a friend to see the twins. After all that, Steve and I are planning to have sushi at Sekisui Friday, I have a meeting with the Early Intervention lady in the am to set up the days that MJ will have therapy, then it is off to the pediatrician for a well baby checkup. Busy week, but it beats sitting at home!!!
Well, it is after 11 and I am pooped tonight. I didn’t sleep well last night. MJ had a tummy ache and her stomach muscles were so dang tight. I massaged her and patted her, hopefully tonight will be better. I hope everyone is doing well
Much Love,
Bethany

Monday, April 07, 2008
God Doesn’t Reward Ugly :o) Current mood: blissful
Wow, what a day this has been! My hubby was off of work and allowed me to sleep in a bit. That was very nice, thank you Buddha! Once I was up though, I had some important phone calls to make and dreaded every single minute of them.
A few weeks ago, I called LPCH, the hospital in CA, to see what my balance was at the hospital and also at the physician services. Both places were happy to report that the balances were zero. I was a little skeptical of this, so I called back again later that afternoon and talked to another person, who also said they were both zero. I was so happy! At one point, we owed almost $300,000 for unpaid claims by our insurance company. So...fast forward to Friday. I was worn out from Macy’s heart cath, she had been discharged, and me and my mom, sister, and MJ hit the new Vera Bradley store in Germantown before heading home. So, I was tired. I got home and immediately noticed a bill from LPCH.....to the tune of over $15,000 for physician services that our insurance did not cover in the appropriate time. To say that I was upset would be an understatement. I was angry, sad, pissed, stressed, anxious, and dumbfounded. After I calmed down thanks to the help of my hubby, sister, and mom I just decided that you know what.....once again she is worth every dime that we have to pay and some how and some way, the Lord is going to see us through this.
So, today I called to see what could be done. As her parents, we did everything that was necessary during her hospitalization and everything should have been covered by the state of California or her insurance. However, I have learned that when you have a sick child, if you do not qualify for government aid, it is very wise to have a primary and a secondary insurance policy for the said child. We are currently in the process of doing this for Macy Jane since there doesn’t seem to be any programs in Tennessee that look only at Macy’s income and not ours. I check the internet almost daily to see if something else pops up that would help us have help with her bills, but so far nothing. I am just very thankful that me and Steven will never have to worry about having a job considering the line of work that we do.
Anyways, back to the phone call. The bottom line is that we have to apply for financial aid that will either a. pay the balance at 100% b. discount the amount a lot and put us on an interest free payment plan or c. make us pay the full amount with no interest on a payment plan for the rest of our lives. This is all through the hospital. I am faxing over all of the paperwork and forms that they need tomorrow morning and should know something in ten business days. Ya’ll please pray that they go with option a or b. We definately meet California’s income requirements with just Steve working. It is amazing to me that what he makes in TN is considered excellent pay per hour, but in CA that is like a janitor’s pay!!!!
As for me working. The big question is when and where do I return to work?! I will be returning to Baptist in the ICU hopefully sometime at the end of this month. However, I am going to be applying at St. Jude in the next few weeks for a part time position so that MJ can have secondary insurance. I have always wanted to work at St. Jude and just have never taken the step to do it. Perhaps this is the Lord’s way of showing me that this is the time. Thankfully, my mom is just as competent at taking care of MJ as we are and she will watch MJ while I work a couple of days a week. She will help her with her therapy etc. so MJ won’t be missing out too much with me not being there. I will miss her though!
Speaking of Macy Jane. Today she made me and Steven laugh so freaking hard! This morning Steve put her in the Bumbo with the little tray and she was playing with her toys for quite a while. Next thing Steve knew, she was asleep in the Bumbo. She was sitting up like normal and her head looked like someone falling asleep in church. It would start to nod down towards the tray and toys then jerk back up, all the while with drool streaming out of her mouth. Steve would whistle every once in a while to get her attention and she would flutter her eyes open and go back to sleep. I got a picture of it and will post it sometime this week. It was too funny! She has quite the personality developing. I am afraid that that red hair that she was born with has something to do with that personality. We now know how to pitch a fit when our favorite toys are taken away, when we want to be picked up, or when we just aren’t getting our way. At the same time, she is such a sweet baby....unless she is clawing your nose and mouth and trying to claw your eyes out. She keeps me laughing, even when stupid people make me mad on a daily basis.
Hmmm...what else tonight? Oh yes. I am sure most of you know that the Tigers lost tonight. I think that they met their match tonight. The Jayhawks defense was outstanding at shutting down all of the key scorers for Memphis and to put it bluntly.....Memphis playing stunk for a good portion of the game. Way too many turnovers, missed shots, missed free throws, too many early fouls. They had a chance to take the game and blew it. It sucks for Memphis and for all of the fans, but eventually they will get their National Championship trophy, even if it isn’t in our lifetime. Kansas wanted the game more than Memphis and showed up ready to win. Maybe next year the Tigers can go all the way (maybe even undefeated?!) and actually secure that long awaited trophy/net.
In other sports news.....the Memphis Redbirds first home games are this weekend! It stinks that Steve has to work because going to baseball games are one of my favorite spring/summer activities with Steve and our friends. We will hopefully be able to go to the next weekend of home games though. The Redbirds have never really been that great, but I love baseball games and will support them no matter what.
I am taking my first cake decorating class in the morning at ten. I am super excited! Hopefully my newly learned skills will help me make the monstrous birthday cake that I am baking for MJ.
Well, that’s it. I am off to bed! Tomorrow is a busy day and it will end much like tonight....watching a basketball game. The Lady Vols are playing Stanford for the championship, but hopefully they can pull off a win!
Much Love,
Bethany

Sunday, April 06, 2008
Let’s Grow Up, Shall We? Current mood: bitchy
I am a Memphian and of course I will cheer for the Tigers. I am a Tennessean also and will cheer for the Lady Vols and have for years. Tonight, I updated my mood and said that I was tired of cocky Memphis fans & that I was forgetting about the Tigers for a minute and how about them Lady Vols?! Some person, who shall remain nameless, updated their mood and put that jealous SEC fans who rely on a women’s team are worthless. I thought nothing about it until the same person updated again that they deserve to be cocky because they have been on the bandwagon for over 20 years.
I mean, seriously. Do you have to be SO defensive? I wasn’t even thinking about this person when I updated my mood. Everyone is entitled to support the teams that they like and as a female, that has been supporting the LADY vols for a number of years, it is my right to be happy that they won their game tonight because it went down to the wire. It doesn’t make me jealous of the Tigers because I support a women’s basketball team. I happen to support a team that has been to the championship seven times in recent years, who gives a crap that it is a woman’s team. I am female and love to watch women’s sports. It doesn’t always have to be about the guys.
For someone to make that statement about being a jealous fan and being worthless because I "have" to cheer for a WOMAN’s team to support a school is absolutely rediculous. Last time I checked, it is America and we have the right to support any team that we want, male or female. The way I see it, I am a double winner because hopefully my Lady Vols are going to win on Tuesday night and maybe the Tigers will win tomorrow night. It is my choice to support a woman’s team and appreciate smart a$% comments to be kept to yourself.

Thursday, April 03, 2008
Macy Jane’s Heart Cath Current mood: exhausted
Hmm, where to start? We woke up at 4:30am and were at LeBonheur by 6. They did not call us to go to the cath lab until right at 8, the doctor came around 8:30, and by 9:15 we received the call that they were getting started with the procedure. We were told it would take about a minimum of 2 hours, longer if they had to do some interventions. All in all, it took them 3 and 1/2 hours.
This is the story. She has outgrown her conduit, ALREADY. This was something that we knew would happen, we just did not think that it would be this soon. Dr. Lutterman was able to place a 10mm balloon in it and open it back up, but that is only a temporary fix. He also had to balloon a tiny part that comes off of her conduit. The pressures in the right side of her heart were slightly elevated before he ballooned the conduit, and once he opened it up, the dropped back to pretty close to normal. Thankfully, she did not get the diagnosis of pulmonary hypertension! Praise the Lord for that. The right side of her heart looked great in the size of it, so it is not "failing" in any type of way.
So, where do we go from here? CALIFORNIA baby! Yee-haw, I miss that place SOOOOO much. Do you sense the sarcasm dripping from my words? The information that they gathered from her heart cath will be placed in a file and sent to Dr. Hanley for review and get his recommendations for treatment. The most likely recommendation is to have the conduit replaced with a larger one that will hopefully last her for 2-3 years. *hopefully* At first I was upset, but her outgrowing the conduit is actually a good thing I guess, because that means that her arteries are growing, which we were told today that they have definately grown. It will probably take 1-2 months to hear from Dr Hanley and so it will probably be late summer when we return to CA. It is considered an elective surgery, and they typically like to do this type of surgery before cold season/fall.
This does mean that she will have open heart surgery again, but hopefully it will not be as dramatic of a surgery as the previous 2 surgeries. The recovery time is supposedly much quicker than others. So, maybe a couple weeks in CA? We shall see.
Please pray for me and Steve. We have many decisions to make in the very near future, with the biggest being where and when do I return to work. Do we get a secondary insurance for her? I could go on and on, but will not. Just please pray. It wasn’t all bad news. It just stinks that she outgrew it so fast, but God heard our prayers and let her arteries grow!
That is all for now. We are in the ICU tonight, just for precautions. We were able to see her a little after 2 in the recovery room and she was awake and happy and kicking, trying to talk. She has been so good all day long and playing! In fact, it is almost 9 pm and she is still awake She is getting tired, and so are we. Bedtime soon I hope. The new CVICU and LeBonheur is so awesome. I love it! You are able to stay with the babies 24/7, able to sleep in the rooms with them, eat, drink, use their internet....it is pretty sweet. It definately makes the stay much more enjoyable! The nurses that work back here are some of our favorites, which helps 100%!
I am going to go for now and see what jobs are available in the area. Thanks for the prayers, they have really helped and we are SO blessed.
Much Love,
Bethany

Tuesday, April 01, 2008
Just Think Current mood: accomplished
That was the title of a card that me and Steve received once MJ was born. I was cleaning tonight and found this card and another story in an odd place, and it was just meant for me to find it, tonight. The rest of the card reads:

Just Think
Your DAUGHTER is here not by chance,
but by God’s choosing.
His hand formed her
and made her the person she is.
He compares her to no one else---
she is one of a kind.
She will lack nothing
that His grace can’t give her.
He has allowed her to be here
at this time in history
to fulfill His special purpose
for this generation.
--Roy Lessin--
I have believed from day one that Macy Jane was put here on this earth for a specific purpose, and that God chose me and Steve to be her parents. Would I trade her for a "normal" baby? Absolutely not. Do not get me wrong, there are days that I wish for a "normal" life, but never in a million years would I trade my daughter for that. She is who she is and I can only hope that we, as her parents, will teach her to live for the Lord and to thank Him for His protection on her life and to help others as she gets older.
Another piece of paper that I found is a short story that I received from my sister shortly after we found out that MJ had a heart defect and DiGeorge Syndrome. My entire family went through a very hard time adjusting to the news, and my sister lifted me up daily with emails and inspirational stories. I am forever grateful to her for that, she will never know how much she helped me during those dark days. This is the story:
Malachi 3:3 says: "He will sit as a refiner and purifier of silver."
This verse puzzled some women in a Bible study and they wondered what this statement meant about the character and nature of God.
One of the women offered to find out the process of refining silver and get back to the group at their next Bible study.
That week, the woman called a silversmith and made an appointment to watch him at work. She didn’t mention anything about the reason for her interest beyond her curiosity about the process of refining silver.
As she watched the silversmith, he held a piece of silver over the fire and let it heat up. He explained that in refining silver, one needed to hold the silver in the middle of the fire where the flames were hottest as to burn away all of the impurities.
The woman though about God holding us in such a hot spot; then she thought again about the verse that says: "He sits as a refiner and purifier of silver." She asked the silversmith if it was true that he had to sit there in front of the fire the whole time the silver was being refined.
The man answered that yes, he not only had to sit there holding the silver, but he had to keep his eyes on the silver the entire time it was in the fire. If the silver was left a moment too long in the flames, it would be destroyed.
The woman was silent for a moment. Then she asked the silversmith, "How do you know when the silver is fully refined?"
He smiled at her and answered, "Oh, that’s easy--when I see my image in it."
If today you are feeling the heat of the fire, remember that God has His eye on you and will keep watching you until He sees His image in you.
I will be honest and admit that the past few days I have been struggling with thoughts about "what if" and "I wonder" etc. I always get like this before MJ has a procedure and somehow the devil ALWAYS tries to find ways to discourage me or make me fearful. I.E. tonight I was looking up some info on MAPCA’s and I came across 3 websites of adorable children that were ages 2-3. I read their stories, which were exactly like MJs and then at the end, I learned that the children had become angels. I read those stories and immediately had a panic feeling in my stomach, but then I thought of the Bible verse that talks about God not giving us the spirit of fear. I know that the Lord is with me and my family each and every day. I just need to focus on His will and He will give me the strength to face each day and the challenges it may bring.
Well, it is after 2am and I finally have the house clean and ready for company. I am just waiting on a load of clothes to finish drying and then I am off to sleep for a few hours. I will be spending the night at my parents house the next 2 nights and then Thursday night I will either be back home or at LeBonheur overnight. Everyone is praying that she will get to go home Thursday afternoon, right?! Remember....hospitals BAD.....no stay over night. I will try to update everyone as soon as I am able to with the results of her heart cath.
Thanks for reading, one day I will learn to make these dang things shorter.
Much Love,
Bethany

Monday, March 31, 2008
You tell me if this makes sense. Current mood: bitchy
The other day, I called to make a payment on one of Macy Jane’s medical bills. When I was finished with the payment, I asked the gentleman on the phone what was my balance. I knew that it should be under a certain amount and soon to be paid off. He proceeds to tell me that my balance is over $4,000!!! Um....how did it go from $160 to over $4,000?? Come to find out, they billed the same amount 4 times to MJs old insurance company for a procedure on MAY 22, 2007, and the insurance company thought it was all duplicate charges. So, they denied it and requested further information.....this was September 18th. Actually, let me back up. They paid 2 claims and thought the others for the same exact amount were the duplicates. The amount was $3,998 and because we used an in-network PPO provider, the insurance only had to pay $234. Massive discount on that one! Well, by the time insurance received the information from UT Medical Group, she had used all of her 2million dollar lifetime money from Baptist. So, we have to pay that. It is absolutely rediculous that almost a year later we are billed for this.
I talked to UT Medical Group and explained what happened and they offered me a 30% discount. NO THANK YOU. I want to pay what the insurance company would have paid you, $234!! If you would accept a check from them for that amount, what is the big deal about accepting that amount from me. I was getting nowhere on the phone, so I drove to Nonconnah Blvd and showed up at their office, which turns out to be a call center. They were caught off guard to see me there. They told me that if I supposedly couldn’t afford to pay it, then I had to show proof, or I could pay them $2,000 in 30 days and be done with it. I am stubborn so I went home and spent like 3 hours providing bills and bank account statements. I get a call this morning from "Beth" who is just a call rep and she informed me that her manager was giving me a take it or leave it final offer today. I either pay the full amount on a payment plan, or I pay $1,000 to them within thirty days. The freaking manager didn’t even have the balls to call me himself, jerk. Also, she asked me at the end of the coversation this questions. "Maam my boss wanted to know if your husband is an RN at the hospital he works for." WTF? Why does he want to know that? I can tell you why. They think that just because we are both nurses that we make tons of money and can afford to pay out thousands of dollars. HELLO dickhead. I haven’t worked in almost a year and it isn’t like we don’t have OTHER bills to pay. I was really pissed off when she asked me that. I wanted to say tell your pansy of a boss to crawl out from under the rock he is hiding under and call me and ask me himself. If we were a family that chose not to work and live off of the government, we could just file bankruptcy and be done with it, or depend on Uncle Sam to take care of us.
However, we are not that type of family and even if it takes until we die to pay off the bills, we will do that instead of taking the easy way out. With UT Medical Group, I have no option but to pay them within 30 days, I would be a fool not to take the $3,000 discount. She was quick to tell me that I still had a balance after I pay the $1,000 and that I need to make my monthly payments to them. Stupid idiot, I have paid my bill every single month, on time. I am not asking for a freaking handout.
Does it make sense to anyone? I wish to God that I could mail Pittman and Associates a check for $234 and tell them to just make a payment to UTMG, but that is fraud. It isn’t fair to people that are in our type of situation that have sick children. The people in doctor’s offices and hospitals need to stay on top of their billing so that families in our situation aren’t left with thousands of dollars in bills, that SHOULD have been covered by insurance and would have if the billing was done in a timely manner. I mean she was 2 days old when this procedure took place. It should have been paid in full by September.
Sorry to rant, I am just extremely pissed off right now. I am very grateful for the discount, but I am sick and tired of money hungry companies that have no compassion. It is a cold hearted business world and people only care about putting millions in their pockets. Well, guess what. I will go back to work at Baptist until a position opens up at St. Jude or St. Francis so that I can have a secondary insurance for Macy Jane and this will not happen again in the future if she maxes out her primary insurance policy. I dont want to leave Baptist, but for our financial stability I will.
And just for the record. For all of you people out there that say "Oh you and your husband are both nurses, ya’ll make lots of money and only have to work 3 days a week" blah blah blah. We have bills just like everyone else and are crucified at tax time because we make enough money to cover our bills and apparently the people on welfare. Yes, we may only work 3 days a week, but in those three days we work the same amount of hours as people that work 5 days a week....so don’t even go there with me.
If the democrats could fix the healthcare industry and help the middle class they would have my vote in an instant. So far, all I have heard is promises and haven’t seen any changes. I just want to know why every government program in Tennesse is for people that are on welfare or people that are considered in poverty because they make $30,000 a year. What about people like us that don’t want a dime of money for us as the parents. All I want is medical coverage for my daughter. As her parents, we make enough money to cover the household expenses and insurance deductibles. Last time I checked though, we do not bring home millions a year and therefore there should be some sort of program for children that looks at the child’s income and not the parents. It is not about me and Steve. We don’t need money to live on and pay our bills. We need coverage for our daughter’s medical needs. Once again, as parents, we have to be disabled or lazy in order to get help from our wonderful government.
Gosh, I am so mad right now I could scream. Instead I will just finish cleaning my house and play with MJ. She is worth every dime that we have to pay to have her in this world.
Sorry for those that had to endure reading this. Thanks for reading though And if you have any comments for me about how wrong I am or that I am judgemental because you get goverment assistance, keep them to yourself. They will only add to my anger and this blog isn’t about you. It is about me and my family and the screwed up medical world.