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!
Yesterday they had taken Charlotte off the lights because her bilirubin number was down to 13, which was wonderful news. They were expecting a rebound in that number after that because without the lights the bilirubin builds back up. She rebounded to 13.4 last night. Which was not bad and she was still under 14.
This morning when we called to check on her, her bilirubin number was back up to 19, which is not good. She is back under lights again. She is eating well and having full diapers, which is a good sign because she is getting the bilirubin out of her body. But the large jump in number has me a bit worried. I have to go take care of some things, I will keep you all updated as I know more.
Charlotte Under Lights
Overnight Charlotte developed severe jaundice. Her bilirubin number was 22.4 which was the highest they had ever seen. She was rushed immediately and put under lights. They took her up to the NICU and she is still in the hospital. She will be there for several days. Before I left I went to visit her and her numbers came down to 15 and when I called at 8:30pm she was down even further to 13.9 which is good!
I will call in a bit to get an update and go see her today. I am having trouble sleeping now because this is not how all this was supposed to end. She is supposed to be here at home with us. I know jaundice is common, I had 2 now 3 out of the 4 kids had it just not this severe. Had they not caught it the bilirubin could have gone to her brain and caused brain damage. Which is hy I am so freaked out because it happened so fast.
We would appreciate prayers and good thoughts that she is able to come home sooner rather than later. I need to go try and sleep some.
I woke up about 4 am because I had to use the bathroom. Ugh. I hate it when I wake up in the middle of the night! I was getting back in bed when my son touched me (yes, we co-sleep for now) and he was burning up! OMG. It was about time for M to start waking up so when he woke up a few minutes later to hit snooze on the alarm, I asked him to touch Jeff to be sure that it was him that was hot and not me. It was him. So, I grabbed him and was trying to get his jammies off of him without really waking him up because he was sleeping soundly. Apparently having the approximate body temperature of lava did not bother him at all, just me.
I got him undressed, but he woke up which was fine. His whole body was burning up! So, I was letting him lay on the bed in his diaper to cool down some if he could before I would break out the water and wash cloth. He has since returned to normal temperature and is back sleeping.. So I am a happy momma now. He normally runs on the warm side like his daddy and so if he was just a little warm it would not have been such a big deal, but he was HOT and I had never felt him that hot before, so of course a good momma does, sleep be damned, I got into action.. SO I guess you could say I was a super action momma this morning!
The one thing I hate is that waking up early and when I say early I mean with M at 4:30am, is that I am hungry! Now normally my stomach can not handle food at that time, but since I am hungry, all bets are off. Normally, I will make myself something like cheesy scrambled eggs and toast. This morning I had a bagel with PB&J on it. It really hit the spot! So, now when I am finished here, I will lay back down with Jeff and go back to sleep again. The other reason I did not have the eggs this morning is that we are out of the cheese I use for them. I could use the mild cheddar but it does not melt as nicely or get as cheesy as the Kraft singles do. Just my personal preference I guess.
Speaking of cheesy eggs, the Waffle House has awesome cheesy eggs! I have not had them in years though! They serve it with raisin toast, which is good but I have to be in the mood for it. Sigh. I miss Waffle House. There is one not far from here, but it is difficult to get to without a car. Oh, my soon to be mother in law got Jeff this wonderful new car seat, it is a convertible one that he will have until he is 7! I am so blessed. He is almost out growing the car seat we have now, so this could not come at a better time for us!
I am headed to lay back down.. Catch ya later!