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!!!!!
Wednesday, December 12, 2007
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
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
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
Monday, November 26, 2007
Monday, November 26, 2007
We are GOING HOME!!!!! Current mood: chipper
Yep, that's right! After 6 months of hospitals, Macy Jane is FINALLY being discharged later this afternoon. The wi-fi is down again at the hospital, and I have had no way to update people for the past week. Thankfully the library is allowing me to use the computer in here. I just booked one-way flights for us for TOMORROW! By 2pm tomorrow I should be in Memphis. I am so thrilled and excited and nervous and anxious....all rolled in to one! Of course, for those that know me, I will of course be stopping at El Porton before heading home I cannot wait to get home and let my beautiful daughter enjoy life outside of a hospital.
Please pray for travel safety tomorrow. I specifically booked a flight that has a layover in Phoenix, where I know that there isn't any snow or ice because I do not want anything hindering us getting home! Also, I am nervous about taking MJ that high in the air, but she has had the complete repair so we shouldn't have any trouble with her oxygen levels. Just pray for us that we make it without any problems!!
I will update again, hopefully from my house!!!! It feels wierd saying that considering I have been there probably less than 10 times in the past 6 months. I hope we will get home and not have to go to the hospital for a LONG time.
Thanks for the prayers!!
Much Love,
Bethany
We are GOING HOME!!!!! Current mood: chipper
Yep, that's right! After 6 months of hospitals, Macy Jane is FINALLY being discharged later this afternoon. The wi-fi is down again at the hospital, and I have had no way to update people for the past week. Thankfully the library is allowing me to use the computer in here. I just booked one-way flights for us for TOMORROW! By 2pm tomorrow I should be in Memphis. I am so thrilled and excited and nervous and anxious....all rolled in to one! Of course, for those that know me, I will of course be stopping at El Porton before heading home I cannot wait to get home and let my beautiful daughter enjoy life outside of a hospital.
Please pray for travel safety tomorrow. I specifically booked a flight that has a layover in Phoenix, where I know that there isn't any snow or ice because I do not want anything hindering us getting home! Also, I am nervous about taking MJ that high in the air, but she has had the complete repair so we shouldn't have any trouble with her oxygen levels. Just pray for us that we make it without any problems!!
I will update again, hopefully from my house!!!! It feels wierd saying that considering I have been there probably less than 10 times in the past 6 months. I hope we will get home and not have to go to the hospital for a LONG time.
Thanks for the prayers!!
Much Love,
Bethany
Friday, November 16, 2007
Friday, November 16, 2007
Lord Help Me Current mood: pissed off
Lord Help Me because I am about to scream and shout at the nurse practicioner's, residents, physician assistants, fellows, and doctors. Maybe if I do that and wear bright red and purple polka dots, someone will come in to this room and talk to me face to face and let me know what the heck is going to be done with my daughter's health.
Shot to hell are the plans I had for going home on Friday. Perhaps the Lord is trying to teach me that when I make plans He doesn't like them and that I should give up all hope of going home. Macy Jane is back on a 7 day course of Vancomycin. Why you ask? Because this morning when I changed her dressing on her chest it was blazing blazing red AGAIN and had some pretty nasty drainage on the gauze. I immediately called the nurse who called surgery and asked someone to come and look at it. The fellow came and squeezed it and pushed on it and rubbed it and said that although there isn't any obvious drainage, it definately looks a bit more angry/aggravated than it should. They drew a CBC and CRP.....white count is actually down a smidgen to 17 but the crp went back up to almost 4 (an indicator in babies of inflammation/infection).....so here we go again on antibiotics. Seven days of therapy is next Thursday being the last dose.
The next issue is that Macy Jane is continously throwing up. Most of the time it is projectile and gets all over her and me and anything near her. Other times it is so sudden without warning and it just runs out her mouth on to her clothing. The pediatric surgeons said that her barium swallow and her upper gi show that she is refluxing but she is refluxing above her stomach and they think that ENT doc should be consulted. So the ENT doc came (although they never came in to speak to me which pisses me off.....they are getting paid to do the consult so by golly at least come and show your freaking face to me instead of going through someone else) and said that the problem was not a throat/vocal cord issue but definately a GI issue related to reflux. ENT talked to GI and both of them are supposed to be going to the peds surgeons and basically saying that the Nissen needs to be repaired.
This is where I am frustrated. MJ had the Nissen before and it lasted a little over a month. They are supposed to last for years! If it is going to last for a month again then why put her through the surgery again. On the other hand, she gains weight and now she is losing weight again. She cannot keep going on like this because she is already behind in her growth and needs nutrition to heal properly, which she obviously is NOT doing right now.
I am thoroughly disgusted right now with the whole entire situation. I am tired of the doctors talking outside of our room just enough to where I know they are talking about MJ just from the bits I can hear and then they never come in and talk to me. I just don't get it. Anything you have to say about my child and your opinion....please come in and tell me. I sit in this room day after day and have nothing but time to think about stuff and I would like someone to come in and actually talk to me besides a nurse practicioner. Thank God for the NPs because without them, I feel like nothing would ever get done. Most of the nurses are wonderful but they just simply don't have the time to do what the NPs do.
I am starting to fail to see the purpose in all of this right now. It isn't like I am living a horrible lifestyle where I go out and get drunk, smoke, do drugs etc and God is trying to tell me to change that. I rely on God every single day and pray for His blessings, strength, guidance, and protection but right now I feel as if all of my prayers are not being heard. Is it too much to ask that I be able to take my baby home and give her a somewhat normal life? Heck I will compromise.....I will settle to have her back at Lebonheur just so that I am back in Memphis where at least we have family and friends. I am starting to realize why God let us not have very many visitors in the 3 and 1/2 months we were at LeBonheur......perhaps to prepare us for being out here for so long without anyone except me, steve, and my mom.
Thank the Lord that my dad, sister, brother, and sister-in-law are all flying in on Monday and Steve is flying back tomorrow. I am so ready to see some different faces it isn't even funny. Just to be able to talk to different people about things other than health. I talked to one of my friends on IM last night and it just took my mind away from here for an hour and was wonderful.
Anyways, I don't mean to sound like such a downer, but I have to vent occasionally. God has brought us this far and I know that He isn't going to leave us high and dry. It just gets harder and harder every day when we see or hear of people that were way sicker than MJ getting to go home. In due time I guess. I just don't want her to be a year old and finally getting to go home. That would break my heart.
Please keep us in your prayers. The specific things to pray about:
1. That MJ will stop throwing up as much
2. The doctors will make a final decision about what they are going to do about her unwrapped Nissen.
3. That MJs wound will start to heal again without infection
4. That she will start to gain weight again consistently
5. Save travels for my family
6. Sanity for me.
Thanks ya'll!
Much love,
Bethany
Lord Help Me Current mood: pissed off
Lord Help Me because I am about to scream and shout at the nurse practicioner's, residents, physician assistants, fellows, and doctors. Maybe if I do that and wear bright red and purple polka dots, someone will come in to this room and talk to me face to face and let me know what the heck is going to be done with my daughter's health.
Shot to hell are the plans I had for going home on Friday. Perhaps the Lord is trying to teach me that when I make plans He doesn't like them and that I should give up all hope of going home. Macy Jane is back on a 7 day course of Vancomycin. Why you ask? Because this morning when I changed her dressing on her chest it was blazing blazing red AGAIN and had some pretty nasty drainage on the gauze. I immediately called the nurse who called surgery and asked someone to come and look at it. The fellow came and squeezed it and pushed on it and rubbed it and said that although there isn't any obvious drainage, it definately looks a bit more angry/aggravated than it should. They drew a CBC and CRP.....white count is actually down a smidgen to 17 but the crp went back up to almost 4 (an indicator in babies of inflammation/infection).....so here we go again on antibiotics. Seven days of therapy is next Thursday being the last dose.
The next issue is that Macy Jane is continously throwing up. Most of the time it is projectile and gets all over her and me and anything near her. Other times it is so sudden without warning and it just runs out her mouth on to her clothing. The pediatric surgeons said that her barium swallow and her upper gi show that she is refluxing but she is refluxing above her stomach and they think that ENT doc should be consulted. So the ENT doc came (although they never came in to speak to me which pisses me off.....they are getting paid to do the consult so by golly at least come and show your freaking face to me instead of going through someone else) and said that the problem was not a throat/vocal cord issue but definately a GI issue related to reflux. ENT talked to GI and both of them are supposed to be going to the peds surgeons and basically saying that the Nissen needs to be repaired.
This is where I am frustrated. MJ had the Nissen before and it lasted a little over a month. They are supposed to last for years! If it is going to last for a month again then why put her through the surgery again. On the other hand, she gains weight and now she is losing weight again. She cannot keep going on like this because she is already behind in her growth and needs nutrition to heal properly, which she obviously is NOT doing right now.
I am thoroughly disgusted right now with the whole entire situation. I am tired of the doctors talking outside of our room just enough to where I know they are talking about MJ just from the bits I can hear and then they never come in and talk to me. I just don't get it. Anything you have to say about my child and your opinion....please come in and tell me. I sit in this room day after day and have nothing but time to think about stuff and I would like someone to come in and actually talk to me besides a nurse practicioner. Thank God for the NPs because without them, I feel like nothing would ever get done. Most of the nurses are wonderful but they just simply don't have the time to do what the NPs do.
I am starting to fail to see the purpose in all of this right now. It isn't like I am living a horrible lifestyle where I go out and get drunk, smoke, do drugs etc and God is trying to tell me to change that. I rely on God every single day and pray for His blessings, strength, guidance, and protection but right now I feel as if all of my prayers are not being heard. Is it too much to ask that I be able to take my baby home and give her a somewhat normal life? Heck I will compromise.....I will settle to have her back at Lebonheur just so that I am back in Memphis where at least we have family and friends. I am starting to realize why God let us not have very many visitors in the 3 and 1/2 months we were at LeBonheur......perhaps to prepare us for being out here for so long without anyone except me, steve, and my mom.
Thank the Lord that my dad, sister, brother, and sister-in-law are all flying in on Monday and Steve is flying back tomorrow. I am so ready to see some different faces it isn't even funny. Just to be able to talk to different people about things other than health. I talked to one of my friends on IM last night and it just took my mind away from here for an hour and was wonderful.
Anyways, I don't mean to sound like such a downer, but I have to vent occasionally. God has brought us this far and I know that He isn't going to leave us high and dry. It just gets harder and harder every day when we see or hear of people that were way sicker than MJ getting to go home. In due time I guess. I just don't want her to be a year old and finally getting to go home. That would break my heart.
Please keep us in your prayers. The specific things to pray about:
1. That MJ will stop throwing up as much
2. The doctors will make a final decision about what they are going to do about her unwrapped Nissen.
3. That MJs wound will start to heal again without infection
4. That she will start to gain weight again consistently
5. Save travels for my family
6. Sanity for me.
Thanks ya'll!
Much love,
Bethany
Thursday, November 15, 2007
Thursday, November 15, 2007
The Princess and The Queen Current mood: cranky
The Queen is tired and the Princess is great. That's my blog for today! Thanks for stopping by
Just kidding. 8 days ago we were told that Dr. Hanley wanted MJ to be put on IV antifungal medication because her culture from the 17th of October grew out a type of yeast that LOVES to invade the heart valves, and the infectious disease doctors and cardiologists did not think that it needed to be treated. Dr. Hanley ordered it, so she was put on meds. The infectious disease docs wanted to see what drugs killed the yeast so they ordered a sensitivity test to see. We were told that the sensitivity would take 24-48 hours and if the results came back that she could take fluconazole through her g-tube then they would switch her to that and we could go home.
Well, we JUST got the results yesterday from the lab. What was supposed to be back within 24-48 hours took 7 and 1/2 days! Not only that but infection disease docs changed their story and told us yesterday that they want her to have 7 more days of IV meds and that by mouth meds were not an option. To say that I was pissed would be putting it mildly. We were told one thing and got our hopes up that we would be able to go home this weekend and then a new doctor comes on Monday and completely changes the plan. Also, they want to check her heart, kidneys, liver, and spleen once she finishes up the antifungals to make sure that no fungal spores are there. (they never were there to begin with, thank God--but they want to be sure none migrated there) So, we are here at least until next Wednesday. She will receive her last dose of fluconazole IV on Wednesday night. The nurse practicioner said that we could do her ultrasounds on Wednesday since Thursday was Thanksgiving and that we should be able to hopefully be discharged Thursday, if nothing else goes wrong.
That would be a huge blessing because there are still seats available on the flight that my family members are going home on on Friday. That would mean that we could not only have Thanksgiving together at the Ronald McDonald House with MJ but also that I would not have to pay $300 for a plane ticket for her. We will have plenty of people to hold her on the plane ride! We will see how she does over the next week.
The throwing up seems to be better the past few days. She went through lots of tests on her GI system since I last updated and the conclusion is that her Nissen has come unwrapped. (the surgery that she had to keep her from throwing up) I could have told them that because she has been throwing up since the end of August. Obviously it wasn't functioning right or she wouldn't have thrown up. The decision that we are waiting for now is whether the pediatric general surgeons recommend redoing the Nissen or just seeing how MJ does and hopefully she will outgrow the reflux. We would all like to try managing it medically instead of surgically right now since she has been through so much.
She lost A LOT of weight over the last week. She was up to 11 pounds 9 ounces, which is the most that she has EVER weighed. Then the throwing up started and she dropped all the way down to 10 pounds 15 ounces. However, since Monday, she is back up to 11 pounds 7 ounces. If we can keep the formula in her, she gains 3-4 ounces a day. That is more than an average baby, but she has about 3 pounds to make up to be at the weight that she should be. We will get her there slowly but surely We just have to have faith and lots of patience.
Steve flew home on Tuesday but will be returning on Saturday so that he can spend Thanksgiving with us. I miss him when he isn't here but he desperately needed a break. Thank God my mom is still here!
So, in a nutshell here is the plan. MJ finishes up IV meds on Wednesday. She will have her ultrasounds on Wednesday afternoon. If everything looks good, she will be discharged on Thursday (Turkey Day) with hopes of flying home on Friday, the 23rd. Please pray that she will not have any more setbacks between now and then.
Thanks for all the prayers and by the way the internet is working here again, thank goodness!!
Much Love
Bethany Jane
The Princess and The Queen Current mood: cranky
The Queen is tired and the Princess is great. That's my blog for today! Thanks for stopping by
Just kidding. 8 days ago we were told that Dr. Hanley wanted MJ to be put on IV antifungal medication because her culture from the 17th of October grew out a type of yeast that LOVES to invade the heart valves, and the infectious disease doctors and cardiologists did not think that it needed to be treated. Dr. Hanley ordered it, so she was put on meds. The infectious disease docs wanted to see what drugs killed the yeast so they ordered a sensitivity test to see. We were told that the sensitivity would take 24-48 hours and if the results came back that she could take fluconazole through her g-tube then they would switch her to that and we could go home.
Well, we JUST got the results yesterday from the lab. What was supposed to be back within 24-48 hours took 7 and 1/2 days! Not only that but infection disease docs changed their story and told us yesterday that they want her to have 7 more days of IV meds and that by mouth meds were not an option. To say that I was pissed would be putting it mildly. We were told one thing and got our hopes up that we would be able to go home this weekend and then a new doctor comes on Monday and completely changes the plan. Also, they want to check her heart, kidneys, liver, and spleen once she finishes up the antifungals to make sure that no fungal spores are there. (they never were there to begin with, thank God--but they want to be sure none migrated there) So, we are here at least until next Wednesday. She will receive her last dose of fluconazole IV on Wednesday night. The nurse practicioner said that we could do her ultrasounds on Wednesday since Thursday was Thanksgiving and that we should be able to hopefully be discharged Thursday, if nothing else goes wrong.
That would be a huge blessing because there are still seats available on the flight that my family members are going home on on Friday. That would mean that we could not only have Thanksgiving together at the Ronald McDonald House with MJ but also that I would not have to pay $300 for a plane ticket for her. We will have plenty of people to hold her on the plane ride! We will see how she does over the next week.
The throwing up seems to be better the past few days. She went through lots of tests on her GI system since I last updated and the conclusion is that her Nissen has come unwrapped. (the surgery that she had to keep her from throwing up) I could have told them that because she has been throwing up since the end of August. Obviously it wasn't functioning right or she wouldn't have thrown up. The decision that we are waiting for now is whether the pediatric general surgeons recommend redoing the Nissen or just seeing how MJ does and hopefully she will outgrow the reflux. We would all like to try managing it medically instead of surgically right now since she has been through so much.
She lost A LOT of weight over the last week. She was up to 11 pounds 9 ounces, which is the most that she has EVER weighed. Then the throwing up started and she dropped all the way down to 10 pounds 15 ounces. However, since Monday, she is back up to 11 pounds 7 ounces. If we can keep the formula in her, she gains 3-4 ounces a day. That is more than an average baby, but she has about 3 pounds to make up to be at the weight that she should be. We will get her there slowly but surely We just have to have faith and lots of patience.
Steve flew home on Tuesday but will be returning on Saturday so that he can spend Thanksgiving with us. I miss him when he isn't here but he desperately needed a break. Thank God my mom is still here!
So, in a nutshell here is the plan. MJ finishes up IV meds on Wednesday. She will have her ultrasounds on Wednesday afternoon. If everything looks good, she will be discharged on Thursday (Turkey Day) with hopes of flying home on Friday, the 23rd. Please pray that she will not have any more setbacks between now and then.
Thanks for all the prayers and by the way the internet is working here again, thank goodness!!
Much Love
Bethany Jane
Wednesday, November 7, 2007
Wednesday, November 07, 2007
Overdue Update Current mood: tired
Hey ya'll sorry it has taken so long to update. The wi-fi at the hospital has been down since last week and the stupid Ronald McDonald House has the myspace site blocked.......grrrrrrrrr.
Well, obviously we are not at home. Macy Jane's white blood cell count was still 21,000 after a week's worth of antibiotics so they were trying to figure out where the infection was. Turns out, her incision in the center of her chest is infected pretty bad. It is doing better, but there is a long way to go. The area is about 3 and 1/2 centimeters long and a centimeter wide and it is as deep as the head of a q-tip.......you used to be able to see bone when you looked in to it. We are doing wet-to-dry dressing changes on it and it is slowly looking better. Tonight the PA for surgery is coming by to take a razor to the wound bed and remove all of the white fibrinous tissue that is blocking the healthy tissue growth.....I dread that. In good news though, she is on another 10 day course of antibiotics (they are done in a few days) and her numbers seem to be coming down slowly. We will be able to come home once her incision heals a little more and her numbers return to normal and STAY there without antibiotics. Maybe 2 2 weeks or less? Who knows.....I don't have a goal date anymore.
The other issue that we have been dealing with is her throwing up. She goes in a cycle where she throws up for 1-2 days off and on and then she will go a few days without throwing up. They consulted GI doctors and everything they suggested we unfortunately had to tell them that it had either been done already or it didn't work. They did a gastric emptying study yesterday and she passed that so she empties her stomach in a normal time. Noone knows why she throws up. The cardiologist that is on this week doesn't care that she throws up as long as she gains weight.....the problem was that she started to lose 1-2 ounces a day. However, she is back on track and gaining weight. They changed her formula to something called Elecare (super expensive) and it is supposed to be super easy to digest. We will see. She has an unbelievable amount of gas. One night I pulled 100ml out of her stomach after she was fed. No wonder she throws up and that is even with Mylicon on board. We have started to be more diligent about checking for air and left over food in her tummy. In other news....she took 3 or 4 tiny bites of applesauce yesterday and she also laughed yesterday!!!
Well, the nurse let me borrow her computer to use the internet since people have been texting me to see how she was. I don't know how long it will be before I can update again. They are supposed to be fixing the wi-fi this week. I hope everyone is doing well
Much Love
Bethany
Overdue Update Current mood: tired
Hey ya'll sorry it has taken so long to update. The wi-fi at the hospital has been down since last week and the stupid Ronald McDonald House has the myspace site blocked.......grrrrrrrrr.
Well, obviously we are not at home. Macy Jane's white blood cell count was still 21,000 after a week's worth of antibiotics so they were trying to figure out where the infection was. Turns out, her incision in the center of her chest is infected pretty bad. It is doing better, but there is a long way to go. The area is about 3 and 1/2 centimeters long and a centimeter wide and it is as deep as the head of a q-tip.......you used to be able to see bone when you looked in to it. We are doing wet-to-dry dressing changes on it and it is slowly looking better. Tonight the PA for surgery is coming by to take a razor to the wound bed and remove all of the white fibrinous tissue that is blocking the healthy tissue growth.....I dread that. In good news though, she is on another 10 day course of antibiotics (they are done in a few days) and her numbers seem to be coming down slowly. We will be able to come home once her incision heals a little more and her numbers return to normal and STAY there without antibiotics. Maybe 2 2 weeks or less? Who knows.....I don't have a goal date anymore.
The other issue that we have been dealing with is her throwing up. She goes in a cycle where she throws up for 1-2 days off and on and then she will go a few days without throwing up. They consulted GI doctors and everything they suggested we unfortunately had to tell them that it had either been done already or it didn't work. They did a gastric emptying study yesterday and she passed that so she empties her stomach in a normal time. Noone knows why she throws up. The cardiologist that is on this week doesn't care that she throws up as long as she gains weight.....the problem was that she started to lose 1-2 ounces a day. However, she is back on track and gaining weight. They changed her formula to something called Elecare (super expensive) and it is supposed to be super easy to digest. We will see. She has an unbelievable amount of gas. One night I pulled 100ml out of her stomach after she was fed. No wonder she throws up and that is even with Mylicon on board. We have started to be more diligent about checking for air and left over food in her tummy. In other news....she took 3 or 4 tiny bites of applesauce yesterday and she also laughed yesterday!!!
Well, the nurse let me borrow her computer to use the internet since people have been texting me to see how she was. I don't know how long it will be before I can update again. They are supposed to be fixing the wi-fi this week. I hope everyone is doing well
Much Love
Bethany
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