Sick

We are all sick (except M, he has an amazing immune system). He took Charlotte to the ER last night about 11:30 pm and they admitted her to the Children’s Hospital after doing 2 breathing treatments and she was not better. She had 2 before that at home, so the total was up to 4. They put her on oxygen. I stayed home with our son because well, we are sick too and honestly I did not want to spread this any more than we had to. This morning I made calls to our appointments on Tuesday and Wednesday to cancel. M just called a bit ago and once the attending doctor comes in and looks at Charlotte they will possibly take her off the oxygen and then the timer is on, with watching her be sure her oxygen levels are stable. They want to watch her for 12-24 hours then they will release her. Hopefully, by tomorrow or Wednesday, she will be home. This has been super hard on us of course. Jeff is not taking this lightly. He was recently diagnosed as mild/moderate autistic. So, I am working on some things for him. Not a great time to be sick! Gotta run! 

-Ciao!

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So Much Going On…

13322147_10154176154503350_2458884458488236793_nThere is so much going on I am going to try to get it all in this one entry. So take a break, grab a drink and relax, this could get a bit long… LOL.

First of all, June is Migraine Awareness Month. I am happy/sad to be talking about this. If you see someone wearing a migraine awareness shirt please ask them about it. We want to tell our stories and be heard. More than that we want people to understand what migraine is and not. I will try to get a fact post in this month for all you out there who don’t know what they actually are and what happens.

Secondly, Charlotte did well with the surgery last Wednesday. We ended up being admitted for a blood transfusion that day too. Luckily we did not have to spend the night. So now she goes back to the hematologist on the 6th of this month for a check and possible transfusion. When they tested her last Wednesday she was at 7.7 for red blood cell count. Which is not super low but below 8 so her doctor wanted to transfuse. Considering that her last check was March 17th and we made it that long with out a transfusion is progress but we are now back on every 2 week check schedule.

Today is her 6 month well check and shots. She lost about 7 ounces again so that will have to be addressed, but I think once we start her on solids she will start to gain weight like a champ! We are supposed to get the O.K to start that today too. So today is exciting!

On the 7th of this month we have to head to Lexington Speech and Hearing Center to have a consult on a hearing aid for Charlotte. While she did well with the surgery, it did not clear up the issue on the left side. So, this is the next step for her before she starts learning to talk.

Our June calendar is filling up more than it was already! I am supposed to have a chat with the neurologist tomorrow and I am not sure he will like what I have to say and honestly I am not sure I will like what he has to say to me! I will try to update tomorrow after that conversation 13344618_10206964912266245_9072397591098437694_nhappens and let you know what happened and what will happen going forth.

Jeff is doing so well! He is growing by leaps and bounds! Speaking of which he can now climb on and off the bed by himself! He also has started to jump, so now he thinks that is so cool he does it every where! It is cute to watch. He is getting so big and learning so much. I am just beside myself because I am wondering where my little boy went!

Jeff and Charlotte love to babble at each other, it is so cute to watch. I will try to get some video of it happening. It sounds like they are having a whole conversation sometimes!

M is doing well. He has gone back to work and is back at Drill. In fact we have had (2) 3-day drills that went so much better than I could have hoped for. I am glad for that considering AT is coming at the end of summer and it is for 2 weeks! We will be fine though and by then hopefully everything will have settled down medically with Charlotte and all.

Well, I think that is all the news for now.. At least that I can remember at the moment anyway!

-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!

No Real Update Yet, but Some Thoughts

I have a lot of friends on Facebook who have commented on my status updates about Charlotte and I am grateful for those words and people. Really I am. I know they mean well. Really I do. However, you are talking to a momma without her baby and telling her not to worry is kind of like telling the ocean to not be wet. Really it is. Worrying is a mom’s job. I do not have her home with me in my arms so yes I worry , when her numbers drop I rejoice but I worry that they will spike again. Like they did. When they spike I worry because I know that is not normal. See, I had 3 of 4 kids that had jaundice, including Charlotte. The others were over night or only a day or 2 stays at best. She is not.

There are other things going on here too that cause me to worry as well. I do not really discuss those on Facebook much because well… yeah. I do sometimes discuss them here and this is posted on my Facebook wall, but usually not every random game playing friend will read this, so I feel relatively safe talking about things here, not to mention it is my home and if I can’t talk about stuff here that affects the family where can I talk about it?

We are in dire need, but you would never know it. I am praying for a miracle every day and I know God is working in my life, but sometimes it is hard for me to sit still and wait. The incap pay from the military has not yet been approved that I know of. We ran into the holidays and I am not even sure it went to the board Friday. We need that money to pay the rent or we get evicted. I have to pay the bills or we have no lights or internet or food.

I am so not even ready for Charlotte to come home yet, I have no diapers for her or formula. I do have a WIC appointment on Dec. 8th but it is getting to that point. We have less that $10 in the bank at the moment. I am worried sick about all this stuff. Not to mention trying to recover from giving birth enough to take care of Jeff and deal with the house too. So much is piling up and sadly no we do not have family near by that can help. We do not really have many friends either. We are on our own. Which is hard in and of itself. So please pray or if you do not pray send some good thoughts our way cause we surely need them at this time. Oh yea, not to mention Christmas is around the corner. Sigh. I am just going to end this here before it gets to be a pity party.

-Ciao!

Charlotte Update

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.

-Ciao!

My Worst Nightmare

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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. 

-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!