Monday, December 24, 2007

Monday, December 24, 2007
Scrooge Current mood: pissed off
The subject of this blog is exactly who I am feeling like tonight. For some reason, I am not in the Christmas spirit. I am not depressed or anything like that, it just doesn't feel like Christmas time to me. Part of the reason is that I missed half of the year being in a hospital and somehow....someway when you do not go outside for days/weeks at a time, time just seems to stop. So in my head, it should be the middle of June because that is pretty much when our lives were put on hold.
Don't get me wrong, I am extremely grateful that Macy Jane is at home with us and I would go through it all over again 50 times if it meant that she would be home with us! I would do anything in the world to help her.
I am just in a pissy mood tonight. I do not feel well at all. I thought it was allergies acting up because all of a sudden my eyes were watering, my nose dripping, and I have sneezed probably 75 times today, no lie. But, now I am feeling really stuffy nosed and my throat is sore. My day started with Macy Jane throwing up all over her spot on the couch. In the middle of me trying to wipe her face, she proceeded to throw up in MY face and in my hair.....it was that projectile. You may be wondering how that happened....well, I was leaning over her trying to make sure her face and ears were vomit free. She has thrown up a lot today. I may sound like a bad mom to some, but don't judge me until you have walked a mile in my shoes. I just get tired of getting thrown up on every day and having to wash burp cloths and towels every single night because we go through the majority of them. I don't get a full nights sleep ever because I wake up every 3 hours to turn her feeding pump on and when I do go to sleep it is a half eye open sleep because I am listening for her to start coughing, which usually leads to gagging, which leads to throwing up. I try giving her baby food, she throws it up because her gag reflex is hyper-sensitive. However, everyone is pressuring me to give her food orally and to do all of these things with her every day of the week to get her back on track developmentally. While I am eager and willing to do all of those things to help her, I would like to be able to enjoy her during the day and have fun with her at times. I know that when I put something in her mouth besides her pacifier, 9 times out of 10 it will cause her to gag. I am not an occupational therapist. I do NOT know exactly how I should be approaching the feeding issues. I do know that just shoving a spoon in her mouth with food on it is not the way to do it. that only makes the problem worse. I don't want her to be miserable all day every day. I agree that she needs therapy etc and I am trying to go through the appropriate channels and work with her until a therapist comes to the house. I wish that I knew someone in my situation that could offer me some advice.
Another thing is this. If ONE more person from Lucille Packard Children's Hospital in California calls me about the feeding pump that they loaned to us, I am seriously going to go off on them and take a hammer to the pump and mail it back to them in pieces. Due to our insurance switching, the case manager at the hospital said that they would loan us the feeding pump free of charge to us until we could get settled in with our new insurance company and get the supplies we needed. The case manager told me to take my time, not to rush, and to get MJ settled in to life at home and then worry about the pump. When I had a new pump I was to call Lupe (Case manager) and arrange to mail the borrowed back. They even gave me enough supplies and medicine for over a month (usually it is only for 7 days). Well, we were home for a week before people starting calling wanting to know if I was ready to mail the pump back. I have taken care of everything on my end. I told the pediatrician what I needed and his nurse is talking to our new insurance (which we havent even recieved our new insurance cards yet.....it just started Dec 1st!) company to find out which supplier etc to order the supplies from. HELLO it is the holidays. Things are A LOT slower. When I get the new pump and supplies I will gladly mail the old one back. Until they hear from me, they need to just stop calling me. I feel sorry for the next person that calls me about it.
Anyways, it isn't just about me and how tired I am of things that are going on. I feel bad for Macy Jane because she is really the one that has to endure all of the pain etc. However, she acts like nothing is wrong and will smile at me....even after throwing up 4 ounces of formula in 30 seconds. Amazing how strong she is. She keeps me going when I get down by just looking at me and reaching for my face and hair and laughing at me when I am acting silly with her.
I just feel like there isn't a moment when I don't feel uptight about something. If my mom comes over and watches MJ while I get out for a few hours, I am constantly wondering if she is throwing up or if she is breathing ok, or how her color is, did she get her medicine etc. It's just hard to walk out the door and not think about those things, because she is my life pretty much 24/7. I know her better than anyone and know exactly what she wants and what her cries mean. Sometimes I feel bad when I am not there for her, but I realize the importance of me getting away and taking a break.
Steve is constantly working. We really don't have much of a choice right now because my place is at home with Macy Jane until she is settled in a routine and headed in the right direction. That means that over 1/2 of our income is temporarily gone. He still gets 2-3 days off a week, but this time of year we aren't able to enjoy seeing each other and having down time as a family because of all of the party's and gatherings that we have to attend. Some of you are probably thinking he works a normal job like every other man, but you are wrong. He gets up at 5 to be at work by 6:30am and I don't see him again until 8:30pm at night. By that time, Macy Jane is asleep for the night and I am exhausted from my day. That doesn't exactly leave a lot of qualilty time for us. This situation is only temporary and we can make it on his salary, it's just a huge lifestyle adjustment for us. MJ is totally worth it, but in reality, I need to go back to work to help save money for the next trip to California and the future deductibles for 2008, which are WAY more expensive than our insurance at Baptist. Oh-well, God has provided so far and people have been very generous while we were in california.
I guess I am just having typical house-wife/motherly blues. This entire lifestyle is a lot different for me and I just haven't adjusted to it fully. I need to get in a routine and stick to it, as much as possible. I just get tired of having to do some of the things that I have to do over and over and over. Some days I dream of a fairy coming to my house and saying "Bethany, go sit down and relax! I am going to cook dinner, clean your house, finish the supper dishes, bathe the baby, feed the baby, and put the baby to bed for you while you enjoy a nice evening to your self!" HAHA I am dreaming, I know. My mom tries to do that but I am pretty sure Steve doesn't always want his in-laws at his house when he comes home.
Oh-well. This Scrooge still needs to do the dishes from supper and give MJ her midnight feed. I will probably snap out of this in my sleep tonight and be fine in the morning. Perhaps me feeling like crap and being tired is the main reason. Anyways, I do thank God that I have Macy Jane here with me at home and wouldn't trade any of this for anything in the world. Unless you have a chronically sick child.....you probably just don't understand how I am feeling....and that is ok I know it is normal to feel down at times, but that is why I have awesome friends that lift me back up.
I hope everyone is doing well. Thanks for reading my pitty party blog. I promise I will be happy and jolly again someday.
BW

Sunday, December 23, 2007

Sunday, December 23, 2007
Ugh! Current mood: irritated
Some people just get on my everlasting nerve. Why is it that so many people now-a-days are just plain rude? You help them with something or do something for them and do not even get a thank-you or acknowledgement that you did something. It seems to happen a lot around this time of year. I am not saying that you should expect to be hailed queen because you did something for someone, but it is just polite to at least say thank-you. I know that it is pointless to get irritated about this because it is just human nature, but I am getting really sick of self-centered, whoa is me, let's have a pitty party all of the time people.
Me and one of my friends were talking the other day about having multiple children and jealousy of the oldest with the younger kids etc. I realized today what a problem that is with my cousin that is 7. His parents are divorced and remarried and his step-mom and his real mom are pregnant and due 4 days apart. His mom already has another 1 year old and my cousin is pretty much neglected because of the one year old and all of the attention on "the baby". His mom does not realize what an effect it has on the poor kid. They don't outright tell him he's not special etc., they just dote on his brother ALL of the time and make little comments that hurt his feelings. There are some of my friends that do that as well with their children with or without realizing it. I don't know what it is like to have more than one child, so therefore I am not an expert. I only base my thoughts off of what I have seen. However, I do know that it is important to make each child that you have feel just as special and equal as any of your other children. Be careful not to single one child out as the favorite or your pride and joy. I am not really sure why this bugs me so much....perhaps because I see it happening a lot these days with some of my friends and they have their blinders on and do not see anything wrong with what is going on. Oh-well....just another ranting.
We had our giant family Christmas party today. Overall it was very good and fun. I hate the cleanup afterwards though! It seems like I spend most of my days cleaning the house and trying to keep everything in order, on top of taking care of Macy Jane. I know....boo-hoo right? It's just that before I didnt care if the dishes were in the sink overnight or I would postpone vacuuming etc. However, something in my head has changed and I can't stand to leave something undone and not do it before I go to bed. I really like starting each new day with a clean kitchen and house. My sister is probably having a heart attack right now, lol. She and my mom have ALWAYS been neat freaks and I was more of the laid back do it when I felt like it type. However, having a baby has changed me and I am trying to be a good example for her so that she will grow up knowing how to keep a clean house etc. It is so much better feeling when my unannounced visitors show up and I don't have to scramble to put things up!
Anyways, today has been one of MJ's throwing up multiple times a day, day. She had about 4 days where she only threw up once a day if that.....I really think that crowds make her nervous and upset her stomach. Whenever I take her out in public or have lots of people over, she seems to throw up more. Perhaps it is because she is not used to lots of people being around her at once. Who knows? Hopefully she will sleep tonight!
Speaking of sleep.....I am dead dog tired tonight. I hope everyone is doing okay and that your Christmas shopping is done!!!
Much Love
BW

Thursday, December 20, 2007

Thursday, December 20, 2007
Howdy
MJ had her first appointment with her cardiologist yesterday. After sitting in the waiting room for an hour and a half we FINALLY got to see Dr. Joshi. The first thing he said was that she was SO pink....and NORMAL!!!! Her visit went well, no tests or anything like that at this visit. The scales at his office said that she weighed 13 pounds 5 ounces.....that means that she gained 1 pound 4 ounces in 5 days. She didn't really weigh that, once we got home she had had a rather large diaper full of surprises, but still weighed 12 pounds 15 ounces. (I rented some scales so that we could monitor her weight gain weekly)
Her weight gain is such an answer to prayer as she is below the 5th percentile in all of the categories. However, her body seems to be trying to catch up rather quickly, so she will be a butterball in no time. She is starting to get rolls on her legs cutest thing ever! She still throws up, but not as bad. I finally was able to find a wedge pillow that keeps her at a 30 degree angle when sleeping and I think that is helping. She usually has a major throw up once a day with normal spit-ups at other times. Much better than throwing up 6 times a day.
That's pretty much the update on Macy Jane. She is doing so well at home and is finally adjusting to life outside of the hospital.
On to other topics for a change. Tonight, I made some French Onion Soup....compliments of a Paula Dean recipe! We haven't eaten yet, but I sampled it and it is SO yummy. Steve called at 8pm and said he was just now leaving work. Long day for him!!! He is working his new job at Methodist and then working one day a week at Baptist to make some extra money while I am off. Kudos to him for busting his booty so that I can stay home. He still gets 3 days off a week so that is nice.
I can't believe that Christmas is almost here. We are having our family Christmas party Saturday at my house. Once again, I will have a house full of company this weekend. That's ok though because I am not one to sit at home and do nothing (well, I am always busy doing something around here) and being in the house all day every day annoys me. I still have a couple of things to get MJ at Wal-Mart. I went to Target thinking that since Target is nicer than Wal-Mart they should have a little better toys and what I was looking for. WRONG. I just hate going to wal-mart, but will suck it up and go tomorrow night.
Well, Steve should be getting home in a few minutes so I need to run. Macy Jane is sleeping peacefully on the couch (we have both been sleeping there recently until I figure out her sleeping/throwing up pattern) and I need to finish supper. I hope everyone is doing well!!!
Much Love,
Bethany

Friday, December 14, 2007

Friday, December 14, 2007
Doctor. Current mood: bouncy
MJ went to the doctor today. It was the BEST visit she has ever had She now weighs over 12 pounds and has actually gained more than what the doctor had hoped for. HUGE answer to prayer. Before he even saw her weight he told me that she looked much better today than 2 weeks ago and then he saw her weight and said the extra 558 grams looked great on her. She was doing well enough to FINALLY receive her 2 month immunizations. She is such a big girl! She cried for maybe 1/2 a second when the alcohol pad was put on her legs, but the needles didn't even bother her. (I can't imagine why.....haha)
I am super happy. I asked him about her developmental status and he said that she is "very engaging" and he doesn't want her to GO to therapy right now. He did say that if I wanted he would have the TEIS (Tennnessee Early Intervention) people come to our house, but he thought we were doing a great job at home and that she would eventually catch up. He was thrilled with her status. I cannot tell you how relieved I am. God has answered SO many prayers concerning this little one. I am so undeserving.
My good friend Micah called me today to let me know she had her baby this morning. I stopped by after the doctor's visit to see them and Emma Grace is sooo cute. It took me back to when Macy Jane was born and I remembered how tiny she was compared to now! Anyways, congratulations to her!!!!!
I am going to go and finish cleaning the house while my mom entertains MJ. My sister and brother and sister in law are coming in to town tonight. My parents 40th anniversary is this month and we are throwing them a big party at my house on Sunday. I hope that everyone is doing well. We are!!!! We do not have to go back to the pediatrician for a whole month!!!!! We go see her cardiologist for the first time on Wednesday (since we have been home), pray that that visit goes well too.
Much Love
Bethany
p.s. Brian, if you ever read this.....please send me an email at tweetyepie@aol.com because I have missplaced your email address and have a picture for you

Wednesday, December 12, 2007

Thursday, December 13, 2007
Happy Birthday to Me! Current mood: touched
With all of the expenses and events over the past 6 and 1/2 months (really the whole year......), Steve and I decided that we were not going to get each other presents for our birthdays (only one month apart). I woke up this morning and had 2 cards waiting for me in the kitchen. One was a sweet card from Steven, the other was a card from my Macy Jane. Inside MJs card was a gift card to the New Balance Store and the note inside said for me not to be mad at daddy because the gift card was from Macy Jane, not him. Haha....that was cute. He broke the rules, but apparently the money magically appeared from our money tree (why can't I get it to grow like that?!) that I thought had died a long time ago. It's ok....I really need a new pair of tennis shoes as my other NB's have seen better days.
I was expecting a pretty low key day spent going to lunch (you know it was El Porton, don't even ask!) with my mom, taking MJ to get her Santa pictures, and then going to Target to get the rest of MJs presents from me and Steve. Well, mom ended up showing up about 3 hours late because she was running all over town getting things for my birthday.......even though she wasn't supposed to. Anyways, she showed up at my house with a beautiful bouquet of flowers that also had a Christmas touch to them, a mint chocolate chip icecream birthday cake, a card with some cash in it (always a good thing!!!), and she took me to Macy's and forced me to pick out the purse I saw in California, but swore I would never buy because of the $. (the purse was now on sale big time!!!--yay!). Also, me, my sis, mom, and sister-in-law are having a girls day out on Saturday and they are taking me to get a makeover at Clinique complete with new makeup. (I desperately need that......I am pretty much scraping the containers of what I have to make it to Saturday!!!)
It really was like Christmas for me! I was expecting nothing, but my husband, daughter, and family are so incredibly awesome and went above and beyond what they should have. I still think that I have the best present asleep next to me, in the form of a tiny little girl dressed in a lilac sleeper all stretched out without a care in the world.
This past year really has been the hardest year of my life stress wise. I know that there is much more stress to go through in the future, but I am seriously hoping that this coming year is a smooth one for all of us. We so very badly need a break from all that has been going on and time just to enjoy being at home and being a family. My one wish for the coming year is to be able to go to Florida for our annual week long vacation laying around on the beach or at the condo. I really hope that we are able to go! We shall see.
On a brighter note......I rented some baby scales today from the hospital. I was simply worrying about her weight way too much, to the point where I was getting down about it. I plopped her skinny little butt on them and it actually said 12 pounds! I was completely shocked. She has NEVER weighed that in her life and has actually gained 9 ounces over the past 11 days. Not too shabby considering she goes through about 4 outfits and 5 hand towels a day puking! Of course.....all of the rice cereal that I am adding to her feedings may have something to do with it. I am praying that the next 24 hours I can keep her from throwing up so that she will have gained a few more ounces. Technically, a normal baby would gain about an ouce a day so she is off just a little bit. I don't think it is enough that he would put her in the hospital though. I am praying and keeping my fingers crossed.
Part of the reason that I am up so late each night is so that I can listen and watch for signs that she is refluxing. She makes this face in her sleep like she has eaten a sour lemon and then she will cough and then puke. This usually gives me enough time to get the syringe and remove what is in her stomach before she can puke it up, or place something under her chin to catch her milk so I can give it back to her. (I know it sounds gross, but it is just milk and she can't afford to lose any) Also, while at the hospital boutique today, I saw something called The Moby. This this was what I believe a direct gift from God I had just told my mom the day before that I was going to look at target for an infant carrier that I could strap on and keep MJ upright for most of the day and still be able to have my hands free so I could do things around the house easier. Well, in the boutique I saw the Moby just as I was walking out. If you haven't heard of it, look it up online and if you have baby's....go and get yourself one! I tried it and it is absolutely wonderful. It is 100% cotton and extremely comfortable, not only for me but for MJ. It was pretty cheap also......$35. I am going to start using that tomorrow and hopefully that will help lessen MJs reflux.
Well, I am going to upload some recent pictures on here....finally. I hope everyone is doing well!!!!!

Tuesday, December 11, 2007

Tuesday, December 11, 2007
What’s Next? Current mood: stressed
Well, today marks 2 weeks that we have been home. I am so happy to be at home with my cutie patootie, but I am still adjusting. I don't know if I will ever go back to the way I was 6 months ago!
Things have been VERY busy for all of us since returning to the best state in the world!! The first night that I was home, I of course went to my favorite Mexican restaurant first, I was greeted with a horrible horrible odor in my house. It smelled like a garbage can. The guilty culprit was our freezer that we keep in the garage. Apparently while we were away, the power went out. Well, the power to the garage and the back of the house never came back on. All contents in freezer (hot dogs, pizza, jalapeno poppers, chicken breasts, burritos, hamburger meat etc.) ruined. Not only did they ruin, it must have been so hot outside that the bags burst. All contents leaked out in to my freezer and in to the garage. Steve noticed this a couple of weeks before I came home and cleaned the freezer and disposed of the food. However, men are men and they have their own ways of cleaning stuff. Needless to say, I was up until 1am that first night scrubbing the freezer, taking the freezer apart to get to the drip pan (Steve helped with that one...haha) and pouring all kinds of different cleaners in to the drain. Let me just say this. We are STILL attempting to get the smell out of the freezer. It isn't even paid for yet and I will be danged if it is ruined. We are now trying lemons and lemon juice. The smell is A LOT better, but I have a super sensitive nose and can still smell it a little, therefore, no food is going in the freezer yet.
The few days after returning home were spent going to Costco & Sam's and Wal-Mart. We basically had no groceries in the house, since we haven't really lived here in 6 months. What fun that was.......me, my mom, and Macy Jane (who was throwing up all day that day) shopping for hours and hours.
My 2 aunts & my mom came over Friday night and stayed until Sunday. We kind of have a tradition where they spend the weekend with me and we decorate my house for Christmas. We had lots of fun and it was REALLY nice having extra hands to help with Macy Jane while I tried desperately to clean my house. I do not understand how it can get so dirty.....especially with noone but the rabbit living in it for so long.
However, 2 days after we got home, I had a meltdown in Sam's. Macy was throwing up alot since Tuesday and was acting very lethargic. I did the new mom freak out thing and called the pediatrician crying. They told me to give her pedialyte and come to the office in the am. I went home and gave MJ the fluids and within an hour she perked up and was playing on her rainforest gym like old times. The doctor didn't really change anything, just said to add rice cereal to her formula to thicken it somewhat. We have already tried it in CA, but he told us to make it a little thicker than what they did. I haven't noticed a huge difference......but am willing to try anything.
The problem with MJ is SEVERE reflux. She is on multiple meds for it and has even had surgery for it, but we just haven't found anything to help it long term. Everyone says as she gets older and bigger and more upright etc. she will outgrow it. Well, in the mean time she is having an extremely hard time gaining weight because she throws up the majority of her feeds. That is the reason that I am stressed out and worried. I know that if she isn't gaining weight, her pediatrician will once again put her in the hospital and label her "failure to thrive". I do not think I can handle that again, especially this close to Christmas. There isnt anything else to do really for it except put her on IV nutrition, which is really really bad for her liver and not something I want done. We will see though, hopefully she has at least gained some weight over the past 2 weeks, enough to satisfy the pediatrician. I can't tell because I am with her every day. I need to find some baby scales and buy them.
If ya'll think of it, please pray that she will have gained weight. Also pray that she will start throwing up less and less. I am going to try to get her in a early intervention program that is free to children with certain conditions/illness'. She is behind in many areas due to being confined to a hospital, but at the same time she is catching up in some areas very fast. She reaches for her toys, plays with her hands, puts everything in her mouth, plays with her feet (although they haven't made it to her mouth yet!!) and is starting to put her arms up when I go to pick her up. As far as rolling over....she is almost there...she just hasn't figured out that she has to move her arm out of the way. She HATES tummy time and part of the reason may be because of her mickey button (g-tube). She has great head control and I can almost carry her on my hip without supporting her. She still has a long way to go before she will sit on her own, but we work with her every single day to strengthen her muscles.
One area that bothers me some is her speech. She will coo and make noises when she is in her crib or laying in the play pen, or even on her rainforest gym mat. (mainly when she is alone) However, when I talk to her she doesn't make sounds, she only grins at me like I am the funniest person ever. She will laugh some when I tickle her. I guess maybe I am expecting too much too soon? Trust me....I am baby talking like crazy to her and giving her time to respond to me etc. Any other tips from people out there? It is frustrating to me because I do not know if this is a result of her DiGeorge Syndrome (which so far she only has the heart defect as a side effect of the syndrome, thank the Lord!!) or just a delay from everything she has been through. One of MJ's roomates in CA was a boy that was 18months old with Digeorge and he did not talk. All he did was cry. He understood what people said to him and him and his mom communicated nonverbally very well.....it just kind of shocked me I guess.
I pray that isn't the case with MJ. I read on the internet as much as I can and probably way too much about how 6month olds should be babbling etc.....MJ isn't close to doing that, but I guess at least she is making some noises!!! She is very alert and turns her head in the direction of the noise, tracks well, etc. Who knows....maybe the early intervention people can give me some insight etc.
Well, in other news. Hmm....Steve's new job is going okay. One positive thing about it is that it is closer to home! Thank the Lord MJ has private insurance again. Hopefully this policy will last longer than 6 months because despite what people have told us, she DOES NOT qualify for any type of government funded program as far as insurance goes. Even with Steve being the only one working, we still make too much money. It sucks because if you are middle class worker you are screwed. You either have to be considered in poverty or so wealthy that you don't have to worry about it. That's the great United States of America way though.
I am really excited about Christmas! I am only buying MJ a few things that she will need in the next year and things that will help developmentally. She doesn't need a bunch of toys or clothes....my family and friends have taken care of that (for which we are SO thankful). I am buying her a newborn Cabbage Patch Kid though.....that's the only toy. Steve and I are not going to give each other presents this year. I have the 2 best presents possible asleep in the next room and honestly that is all I need. I have plenty of clothes, shoes, purses, jewelry, makeup and fun stuff. I think I can survive one Christmas withouth spending $2,000 on presents. Those days are over and were fun while they lasted, but now I am in the real world of a budget
Well, this blog is so super long. I was supposed to be in bed at 10:30 like everyone else. However, I saw that late night is the only time I really have to myself and owed you guys an update.
Specific prayer requests: MJ to gain weight and throw up less, MJs development to continue to progress, strength for Steve as he is working extra, and strength and patience for me as I function on little sleep and have a lot of things on my mind these days.
Thanks for all of the prayers and I promise that I will try to upload some pictures on here soon and blog more often. PLEASE remember to pray that MJs doc NOT admit her to the hospital on Friday.
Thanks and much love,
Bethany

Sunday, December 9, 2007

Sunday, December 09, 2007
Us Current mood: sad
This is going to be a quick post, but I just wanted to let everyone know that we are doing okay. Enjoying being at home. MJ goes back to the doctor on Friday.....please pray that she has gained some weight....if Not I am really afraid that he will put her in the hospital. She looks great though and is really happy. I will post more hopefully tomorrow with some updated pictures.
Also, one of my friends named Kristy (was a nurse at Lebonheur that took care of MJ on weekends) called me today and asked me to pray for her family. Her sister had a sweet baby boy 2 months ago, and he passed away in his sleep this morning. They are thinking it was SIDS. PLEASE pray for the entire family, especially Caleb's parents, and especially at this time of year. It breaks my heart to think of another baby becoming an angel so early in life. Kristy, if you read this, please know that me and my family are praying for ya'll.
Much Love!
Bethany