Friday, October 17, 2008

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

Saturday, October 11, 2008

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 9, 2008

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