A Crazy Week!

I know I have not been here much lately, I will tell you why. Charlotte was in the hospital. She was admitted on Monday and we got home Thursday night. She has the blood disorder I have and her red cell count dropped to 6. It is supposed to be 10 or more. She lost a lot of weight and the doctor was really worried about it. She was sent to the hospital immediately.

While in the hospital she received two blood transfusions and that helped a great deal. She is still on high calorie formula so she can rapidly gain weight because she is underweight right now. I was so worried I could not think straight. I had my lap top but I had to process what exactly was happening with us. She now has hematology appointments and on the 3rd she has her hearing appointment as well. Monday she goes to the pediatrician. So, this is about to get so busy. We are hoping to keep her red cell count  up, by herself. However, if she can not then she will need more blood transfusions. The hematologist will not even think about removing her spleen until she is at least three years old.

She still has her heart murmur and that appointment is in March. We will be at the hematologist every week for a while so they can monitor her. When we left the hospital her red cell count was 10.5, which is where it should be. We will test her on Wednesday to see how far if any it has fallen so we can see the rate that the red cells are being destroyed.

I am exhausted and still worried, but she has some really great medical professionals in her corner. I will try and get here to update on Wednesday after all the appointments have been done.

I need to run, it is time for her to eat!


Ahh Quiet

Finding a few quiet minutes to myself is really few and far between these days so when I do actually have a few minutes with quiet, I tend to savor them. One of the things that M got me for our Christmas was a wireless mouse and keyboard and honestly I just totally love them! One of the reasons he got me these is that I have a bad habit of sitting with the lap top on my legs and as a result of that, I have a pretty bad scar on my leg from the hot fan.

He thought if I had a wireless keyboard, I could sit with the key board on my lap like I am doing now and  type without the nasty burns. I have to admit that I like this much better! When I get a few minutes when I can actually hear myself think (pretty hard lately with all the migraines I have been dealing with. I have a neurologist appointment in May). So while I am savoring the quiet, writing this entry, and eating an orange Hostess cupcake ( I do not like the chocolate ones, I know I should be shot! I can only eat them rarely because I do not like the cream inside) I do like the orange ones, they are not too bad with the cream inside. Although I do eat around it and then try to give it to M. LOL.

M went to physical therapy and took Jeff with him. Charlie is napping because she had a rough night and by proxy so did we. I had a rough night because I had an episode with not being able to regulate my body temperature. I was freezing last night, the heat was on and set at 75, I had on clothes, and was under a blanket, but I was shaking uncontrollably and my teeth were chattering. This has happened before and I am not sure why it keeps happening. I was hoping it was just because I was pregnant but I think it is more than that. So, now I have to make a doctor appointment for me soon and get this looked at. Sigh. I spend more time with doctors than with anyone else.

This month on the 25th there are actually 3 doctor appointments in one day. Two are for Charlie and one is for Jeff. So that day is about to be so very busy and then in Feb. is the heart doctor appointment. And on and on. Since it is still quiet, I think I am going to go lay down until it is not quiet anymore.


Possibly A Turning Point

So, I have been not posting because honestly getting Charlie to the point where she is sleeping well enough so that the rest of the house can sleep too has been a full time job around here. We are all exhausted, finally I broke down and got her a HALO swaddle sleep sack and it finally came yesterday. The hospital uses them in the NICU and in the neonatal nursery. I put it on her yesterday as soon as I opened it and it calmed her little bootie right down and she slept really well for the first time since we brought her home.

We also changed her formula to soy, and finally seeing a decrease in the gas she has had. It was pretty bad until yesterday, so maybe we have hit a turning point with her. I sure hope so because honestly this no sleep thing is wearing on us all around here. As I write this, she is swaddled all snug as a bug in a rug and sleeping in her bouncy seat. That is another thing that has helped me out a lot! I was constantly holding  her before we got her a bouncy seat and this one vibrates and will let her sit in it until she is 40 pounds, so for a good long while!

Jeff of course has been out of sorts since we brought his baby sister home and he is still acting out a little bit, but we are trying to give him as much one on one time as we can while the other has Charlie and we are constantly praising him for being a good big brother. He loves to kiss her and help us with her. Sometimes to the point of being more of a hindrance than helpful, but we let him help anyway and move forward. He is slowly getting  used to her and having her here, so I am hoping that he will settle down soon. He is getting to be such a big boy, he is learning to eat with a fork on his own. Yeah, it gets messy sometimes but the look on his face when he accomplishes it is priceless. We are definitely running the vacuum more these days. LOL.

I went for my post partum check and ended up with a side trip to the hospital for my trouble. Ugh. I had some swelling start a few days ago in my feet and legs, at first I thought maybe I was eating too much salt, so I backed off the salt and the swelling went away but was back the next day even worst than it was. So, I showed my doctor and they were concerned enough to send me to the hospital for an ultrasound on my legs to rule out any blood clots. Which I did not have, thank God. So they recommended that I try and sit with my feet up. Um, I have a newborn and toddler, not happening! LOL. I do try and get my feet up when I can, which is not very often.

I have an appointment with a neurologist in May for my migraines. They are getting way worse and more frequent and it is time I saw a specialist about them and get a game plan working for myself. Right now I have had a migraine every single day since Charlie was born. Ugh. I have tried Firocet but I did not like that it gave me a ‘rebound’ headache so I stopped taking it after one dose. Also it is a controlled substance and honestly I do not want to take that for ever, so hopefully we can find a medicine that will help me but not make me sleepy. Or give me rebound headaches.

I did find a pretty good community of people on migraine.com and they have some very helpful articles and blog posts.. So I am enjoying that. Well, I have to run..