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~

Still Here!

Well, baby Charlotte and I are still in the hospital, hoping that we can go home tomorrow. She had a heart murmur that was not there yesterday so the pediatrician wanted her to stay one more day. I am having issues with pain in my legs which means blood clots usually.

I am so tired and honestly can not wait to get home to be able to sleep, maybe. LOL. Thanksgiving was okay, Jeff and M came up to visit us, but Jeff does not like the hospital and I can not really blame him for that. So he is not having any of me while I am here, it was so much worse when I had IVs in and was attached to machines.

To say that I am overwhelmed and overly emotional right now is honestly an understatement. I look at her and I cry sometimes. I am so happy she is here and she is amazing but sometimes I have to question my sanity! I am so exhausted beyond what I am normally and I have so much that is about to be going on with doctors for the baby. She did fail the second hearing test again, so now we need to see a hearing person. Ugh. I know it is common, but this is the first kid I have had to deal with this with.

Not to mention all the pediatric appointments every other day for the next couple of months. Although it might be different because she is being bottle fed, so she is not losing weight at all. So, hopefully it will not be like it was with Jeff, but we will soon find out.

I gotta run and feed Charlie..

-Ciao!

Confessions and How Lucky I am

This is not going to be a usual kind of post for me, so if you want you can feel free to skip this one…

I have not been able to sleep a lot lately and I know why that is. Some is the pregnancy and the fun stuff that comes with it, but a lot of it is all these horrific videos about Planned Parenthood. First, let me say when all this started, I was on the fence because I was not sure where all this was going. It was one video and I had been to Planned Parenthood in the past for medical reasons and they had always been okay.. However, I had an abortion when I was 16 under immense pressure from people in my life.. These videos make me wonder what happened back then. There was an article that had claimed that PP had been doing all these horrific things for the last 40 years. That is when the nightmares began. 

I look at my son now and wonder what that baby could have been.. what that child could have accomplished. I know it was not my decision totally and I was essentially forced into it. I still share some of the responsibility. I am a very lucky woman, I have a wonderful soon to be husband, a healthy son, and a healthy daughter who will be born soon. So by all accounts, I have it all.. 

We have rough times and we have good times like everyone else. There are days that honestly I am so tired that I don’t think I can make it through another day, then I do. I love my active little boy and I would not change him for anything.. I see all these kids who are terminal and sick and I just tear up. I know some of it is hormones but I feel bad that these little kids have to deal with chemo and other things they should have no clue about. 

I need to go… My boy is dancing and I want to dance with him!

-Ciao!