It’s Been Hard

I am struggling. I wish I could say that everything is all peachy and that California is perfect. It’s not. It is amazing in its own way and I love being here. I do love Woodland, but I fear that we will have to move some place else eventually because I am not sure if it is big enough for us all. Life for me has lost the color and texture it normally has. I am fighting every single day to just get up and take care of the kids. I am so tired at the end of the day and when M comes home from class early I rejoice inside because I can sleep. I really wish that I could say that I am sleeping more because the time change is hurting me, but we all know that would be a lie. 

I am not sure why I am struggling so much right now, but I have been. M is still looking for work. I have doctors for the kids, they are all amazing. I am really seriously blessed in that their primary care doctor is uber amazing and understanding. I was really worried about that. I have a great doctor myself and I see her Thursday. I think I know what she will say and honestly I dread it but at the same time, I am looking forward to it also. 

There is a lot of stuff happening behind the scenes that I can not yet talk about. I just wanted you all to know I am not dead yet. Just struggling to get every day done. I am hoping to be back normally soon, but I am not sure what toll this will take on me yet. 

-Ciao!

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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~

Update on Doctor Appointments

So Charlotte went to the hematology doctor on June 6th and we were at Lexington Hearing and Speech on the 7th. Her red blood cell count was 9.1 so we are holding off on the transfusion for now. She has to go back in 3 weeks for a blood check and a possible transfusion. We also have to go back to Lexington Hearing and Speech the week after to get Charlotte’s hearing aid and I have a neurology appointment on the same day at 2pm. I tried rescheduling and could not until August 30th and that is just way too long for me to wait.

The hearing aid we are getting for Charlotte is similar to the one in the picture, but not exact. That is the exact color I picked out and the plastic part that goes into her ear will be clear with hot pink and purple glitter. I picked the brightest colors that we do not have a lot of in the house. So if we drop it it will be easy to see.

phonak..

July looks to be a horrendously busy month for us. I got Jeff into a program that will evaluate him for a speech issue at the end of June. I am so glad that the doctor at the hearing place gave me the number. I got a lot done today, I called insurance for some stuff, found the preferred drug list for my plan and downloaded it so I can print it out to look at it. I also am getting myself a case manager for my asthma and migraines.

Well, I need to run for a while, but I will add the latest photos of the kids. 

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Busy Bees and Doctor Appointments as Far as the Eye Can See!

The last couple of week have been crazy busy! The in-laws just left this past Friday and it was nice to have them around! We were so busy, me mostly with doctor’s appointments and such. I will get to all those in a few minutes, first I want to tell you that yes, M and I did get married but it was not until October 19th, which is the day before my birthday. I ended up in the hospital until 10 pm that night. Luckily my wonderful brother-in-law had Jeff here at the house because he had to bring his beautiful black lab with him, so instead of him staying where the in-laws were and there was a no pet policy, he stayed with us instead. It was great to get to know him and he got to know Jeff and hang out with us. Jeff also got to know his dog which did not at first go smoothly because Jeff was scared of him. Not because he was mean or anything, actually he is the most well behaved dog I have ever met. Mainly because when Malachi was standing on all four paws he was bigger than Jeff. But by the time they were leaving Jeff was petting him and giving him treats! Now I have to get Jeff to stop throwing food on the floor because the dog is gone! LOL

Back to us getting married, we got married in the main branch of the library here, which has an art gallery. It was the perfect place actually. Mainly because I am a book person and the gallery had all this interesting art. It was a nice ceremony with just family there. When the in-laws get back to California, I will be able to post pictures. They did not bring USB cords for the camera or phones, so the wedding pictures are trapped in those devices until they get back. 

So, as I mentioned on the wedding day I had to go to the hospital. I actually had two doctor appointments that day and we got married in the middle of them. It was a crazy busy day! My second appointment, they took my blood pressure and it was 141/94 according to the machine, which is super high! They retook it and it did not come down, but I always seem to have issues with their blood pressure machine in the office anyway. So, the doctor was throwing the word pre-eclampsia around and wanted me to go to the maternity triage at the hospital for more monitoring, so I did. Mind  you, I was supposed to go out to dinner with my in-laws to celebrate getting married! We never made it that night because I was hooked up to monitors and such for four hours! 

The reason I think that the blood pressure machine is wrong at he doctor’s office is because I was at the hospital and had my blood pressure taken again in less than an hour and it had dropped over 20 points. Apparently they are still talking pre-eclampsia because of some things in my tests I did at the hospital came back high. I have since had my blood pressure checked at a new place yesterday and it was fine, which is a relief! 

So, now I have to do NST’s (Non Stress Tests) for the baby twice a week.  Mondays and Thursdays. Ugh. Not to mention I have a hematology appointment in November, as well as another doctor appointment on the 2nd. I am tired of spending all my time with doctors! LOL. 

So if you do not hear from me, that is where I am at, probably tied to some machine some place wishing I was anywhere but there. I am happy that everyone is taking the baby’s health and my health seriously, but oh man I am tired! Well, this is all I have for now.. 

-Ciao!