Wednesday, April 30, 2008

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

Monday, April 21, 2008

Friday, April 18, 2008

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

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

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 9, 2008

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 7, 2008

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 6, 2008

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 3, 2008

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 1, 2008

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