Crazy House and Crazy Life

So lately we have had a flurry of doctor appointments for the baby because it is coming (way, way too fast I might add) up to her first birthday! Charlotte’s first birthday this year is on Black Friday ( yes, I think it is some kind of cosmic joke that this has happened to me). I look at her and see how far we have come in this almost year, but it has passed so quickly I often wonder where it went! I know that most parents will say that, but for us, it is especially true because we have literally spent more time with her doctors, specialists, and other medical professionals than we have with her at home. For quite a while we were at a doctor office every two weeks or so. It was exhausting and scary. I am not sure I can even put what it feels like into words so that others can really understand it. 

In this almost first year of life for Charlotte, I have had more people look at me like I have not fed my child than I would ever wish on anyone enemy or friend. The feeling when people in a position to make that kind of call and ruin your life when you are doing the best you can for your child is to be trite, scary. It gets so that going to the doctor made me cringe because I knew inevitably we would get around to her weight or lack of it. When they weighed her, I would see the recrimination in the eyes of the nurses, until I started going through all the health issues we had discovered. Then the recrimination quickly turned to pity. I never wanted pity. I never wanted any of this. All I wanted was a healthy child, which I had no control over. So, I had to learn to deal with all the scary stuff. The every two weeks of blood doctor appointments where they would stick my daughter multiple times because they would not listen to me when I told them that she had fragile veins and that they would blow out easily. At one point, trying to get a port for a blood transfusion in, it was 7 sticks in her body. All the while she was screaming. I wanted to snatch her up and leave, but I knew I could not, so I had to sit there and deal with it. 

Our life has been so very difficult and crazy (there is no other word to describe what we have been through as a family) When Charlotte was just a month old, she had her first two blood transfusions. She and I were in the PICU for four days so she could be treated for her blood disorder ( in basic terms her body was not making enough red blood cells to keep up with the ones that her body was destroying, which is why she had blood transfusions). Her core body temperature was also 95 degrees, which caused some concern as well. So, for four days I did not sleep much and she was tested, prodded, and looked at. All. the. time. The nurses and doctors were amazing. She had an echocardiogram done on her heart in which they found that her aortic valve was abnormal. The eventual diagnosis is that she has a bicuspid aortic valve, which means she will have to be watched her whole life. She will also have to be monitored her whole life because of the blood disorder as well. 

She is amazing. She is a fighter. She is my hero. My 10-month-old daughter has had 8 blood transfusions so far and she may need more in the future. Right now she is holding steady. She has begun to make her own red blood cells finally and that is a miracle for me. 

See, we also have a 2-year-old son, Jeff, who has never been sick outside of a two-day fever when he was teething. So the stark contrast between brother and sister is sometimes overwhelming for me. I know that this almost year has forced him in many ways to grow up more than any 2-year-old should have to. He does not understand that his sister is very sick or was. All he saw was she was getting all this attention. He now has a speech delay that we are currently trying to work through. I am going to get him evaluated in November. 

To say that M and I are exhausted is putting it mildly. Charlotte finally started sleeping through the night about 9-months-old, but it is not always the case. I have a wonderful husband who gets up with her when she wakes in the middle of the night. So, I can get sleep because I am a stay -at-home mom. I lucked out in so many ways with M. He is amazing and my rock. Our anniversary is coming up this month, we will have been married for 1 year. It is a hell of a first year of marriage let me tell you! 

We struggle so much every day. With normal stuff. Just getting food into the house mostly. See, we have tried to apply for help but apparently, we make too much money where we live now. We barely make it every month. Sometimes, we don’t and something has to give so we lose phone/the internet or electricity. It is hard. M’s family is amazing and they help us as much as humanly possible but they have trouble too. I am not saying this to gain pity or so people will feel bad for us, that is just how it is. I made myself a promise that when I started this blog that I would be honest and show good and bad here. 

Charlotte is doing amazing these days and we have come far! She is now a whopping 17 pounds and 25 and 3/4 inches long. She has recently moved up to her big girl car seat. She is going to physical therapy and learning to crawl. We are not there quite yet, but very soon!! I am so proud of her and us as a family. We have not given up. We keep moving forward no matter how hard things get. The picture below is where we came from. 

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This is Charlotte under the lights after birth in the NICU

The picture below is where we are now.

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This is Charlotte stretching in her bouncy seat. 

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This cute boy is Jeff.

I love my family with all my heart. We have been through some rough times, but we are getting through them. If you have prayed for us or thought good thoughts for us, thank you. We appreciate it. We will definitely need more in the future. Well, it is lunch time and my boy is asking to be fed! Gotta run!

 

-Ciao~

Uber Crazy

Life in the house has definitely been chaotic to say the very least! Charlotte has been uber fussy and gassy and we are still battling to get her to sleep some what well. It is hard because M is up with her at night so I can try and sleep, but Jeff likes to flop around and I worry about him falling out of bed, so I am not sleeping well because I am constantly waking up to make sure he is still on the bed. 

We have tried soy formula and honestly I did not see much difference at all. She turned one month old on Christmas day. I can not believe where the month went! Seriously! Christmas actually turned out pretty good for us, even though I was not sure it would. M’s National Guard unit got the kids a couple of outfits each and toys, with Jeff getting the majority of the toys because honestly the newborn does not need toys yet. Although she did get a Elmo rattle and a cute soft doll. They also got us a $50 gift card to Kroger, so we did beef ravioli, garlic bread, and salad for Christmas dinner and it was good! M’s mom did leave us Christmas presents when they were here in October, which was nice. 

I have literally had a migraine every.single.day. for a month. I have a doctor appointment on the 4th and I need to discuss the possibility of getting to see a specialist for my headaches, also a new medicine. I did get a new pill when I was there last time and it did work but about 30 minutes later I had another rebound headache. *head slap* I need a med that will not do that and also will not make me drowsy because then when M goes back to work, I can not take that if I have a migraine. The frequency has gotten out of hand. The other day I had a severe one, complete with nausea, light, sound, smell sensitivity, auras, the whole shebang. It was horrible. Of course the kids do not understand and they want to have attention but I was a mess, so M tried to take care of them both for me so I could lay down and try to get the migraine to ease some. Did not really work sadly. 

We are all so tired. Seriously. I spend my days trying to stay awake and not yawn every five minutes, which I am totally failing at by the way. I am planning on making buffalo chicken dip for New Years, which means I have to brave the stores either tonight or tomorrow. Yeah, so not looking forward to that. We were thinking of picking up dinner from someplace and bringing it home. Renting a couple of movies from Red Box and staying home. I know, sounds like a roaring good time, right? I just think that it is too crazy out on the roads with everyone basically bar hopping it is safer to stay home with the kids. Not to mention I do not have a baby sitter anyway. 

One thing that happened that is slightly disconcerting is that my feet and legs have swollen up. Not sure why, when I got up this morning they were almost back to normal, but now it feels like they are swelling again. Ugh. I am sitting with them up as I type this, so there is that. I made a video of Charlotte for the grandparents before Christmas. I will add it here so you all can see it too. Speaking of Charlie, I hear her squirming around, so I need to run!

-Ciao!

 

 

It’s Been Crazy Here

I am sorry for not keeping everyone updated, it has been kinda crazy the last few days. I went on Monday and sat with Charlotte for over an hour and fed her. It as nice to hold her again. She was off lights at that point, so that was good. Then her numbers spiked again and they moved her to the nursery. Well, techincally they moved her first then the numbers spiked. She was back up to 15 this morning but she is back down to 13 again tonight when I called. I am going to see her tomorrow and speak to the doctors because I have a lot of questions. 

We are of course worried about her and I was hoping to have her home this week but that looks like it is not going to happen. She is eating well and having lots of diapers, so that is good, I am worried about all the spikes and the effect it is having on her body. I also am wondering why this is happening most of all. I also am wondering what this is doing to her liver too. Like I said lots of questions. 

I have the best in-laws on the planet, they helped us out with rent.. so that is one less major thing on my mind and we will get some money today or tomorrow to pay the other bills that are due. We have food, so that is not an issue at this point. The WIC appointment to get Charlotte is on that is on the 8th so I am trying to get stuff in case she comes home before that so we can feed her. I am lucky and I have great friends, a friend of mine got me some diapers and an outfit and also shipped a box to me on Monday with other stuff for her. My MIL got her a bunch of clothes as well and other stuff. Right now, the immediate need is bottles and formula. 

Jeff is doing well, he is starting to actually call family members on the phone. LOL. I guess I am glad it is family and not some random person somewhere, although I am afraid that is next with the way he loves to push buttons. He is running all over the place and learned how to open a zip lock bag in the last few days. Now nothing is safe! 

M is doing well, he started physical therapy and the physical therapist was impressed with what he has done on his own. He is working hard as usual and is happy with his own progress. I am just glad he finally is in physical therapy and able to ork on gettng his balace and stability back. 

That is about all that has been going on for now.. 

-Ciao!

We Need a New Computer… Badly

I know what you are thinking, aren’t you using a computer right now? Yes, I am using M’s computer at the moment because mine is being used as a DVD player for Jeff at the moment. (honestly it is about the only thing it is good for anymore maybe besides email and possibly surfing FB but not playing any of the games) My computer is the only working one with a DVD player on it and most of the time it barely works right. At the moment we do not have cable TV nor do we want it. It is so expensive for what little programming you get. Eventually we are going to do Netflix and Hulu Plus for our TV needs, but right now even that is too expensive for us.

Honestly I do not mind going to CBS.com and ABC.com and streaming the shows we missed during the week for free. We  usually do this on M’s days off so we can watch together. The problem is that it is coming up rapidly on season finales. So then the question becomes what will we watch during the summer. Ugh.

We occasionally do Red Box movies because there is one across the street at the Kroger. It is nice and I got to see the newest Night at the Museum movie which I loved! But again most of the time we do not have the extra cash for that. Right now we are in the situation where we have enough for all the bills, rent and some food. No, we do not get help from the state except for medical for me and Jeff. Apparently we do not qualify. We do get WIC for Jeff now too, which is a help because that boy loves his milk! But no food stamps because M makes too much money.

So sometimes we have to choose to be late with a bill or have food in the house. It sucks. I can not even explain how much that sucks. We moved in March to a new place and we are saving about $20 in rent and water from the one bedroom we were living in. We upgraded to a 2 bedroom 1 bath and are saving some money, I love it when that happens! I use coupons for most things or buy store brands or even off brands. I use Ebates when I have to get diapers or wipes from Dnetiapers.com. They offer e coupons and other discounts and I can usually get bigger boxes than what are found in stores so I can go longer between orders, which helps out a lot too. Normally my ebates is about 2% cash back on what I spend there, it may not seem like a lot, but when every penny counts, it helps believe me! Our internet is about $65 a month but that includes a phone in the house. When we had cable and internet it was almost $200 a month and that was for basic cable!

It is not easy most months because the last 2-3 paychecks have to go to rent, so I have to make sure we have enough food in the house until the next payday. Sometimes I do pretty well and others I fail badly and we have to ask for help from family.

Last month I made a couple of mistakes that led to us not having enough food. When I paid the electric bill, I did not look and I ended up paying $217.00 instead of $117.00 ( we moved so new service includes a deposit) and I did not keep an eye on the wipe situation so we ran out and had to buy more in a week we needed to save a pay check for rent. Sigh. M’s family has been wonderful and helped us so much since Jeff’s birth. We are so lucky to have them!

This month is going a lot better. The bills that needed to be paid this week are paid, diapers were bought. We are on track. Not to mention that M has Drill this month with National Guard, so that will be a little bit of extra income in time for rent. Also, since he is going through a Med board, he gets paid for those days he has doctor appointments for that too. So since he had 2 days of that this month, that will come in handy as well!

M has a cell phone, but it is a 90’s flip phone and his monthly cell bill is $27 and some change after taxes and such. We use Net10. I would love to have a Galaxy 5 or whatever, but we can not afford it. We do not have a car, we ride the bus most places we need to go. If there is no bus line near by then we have to break down and take a cab. Which kills us. Seriously. It is hard to live like this, but we have to. I have had relationships where we have had everything we needed, but honestly I was not with the right person. I am with the right person now and maybe we do not have all the comforts of everyone else, we are strong together and we have a wonderful son. I am lucky no matter how you look at it.

But back to the computer. M and I share one computer. It is hard. We both would love to play WoW together again one day, but right now, Blizzard gives you a starter account for free, it is limited in what you can do with it, but it fills my addiction until we can afford to reactivate our regular accounts. The best thing of all is it is FREE.

I have a roof over my head, my loved ones with me, food in the freezer. I am blessed beyond belief. I was homeless once. I would not like to do that again. Especially with a child in tow. So, for now we make sacrifices on the things we want for the things we actually need. It is called being an adult, yeah it sucks.

-Ciao!