There's no place like home...

Home at last! I am so happy we finally have Emma home. We got home around 5 last night. Emma slept very well in her very own bed last night and loved the fact that no nurses can in the room every 2 hours!!!

The problem was that she had 5 ulcers in her stomach that bled. We had no idea until she started passing blood in her diaper that she had ulcers. Her electrolites and hemoglobin were way out of whack when she got there and they dropped a few times during the trip too. She had 3 blood transfusions , lots of thanks to the 2 A positive and one A neg. donors that saved my baby's life!

She had 2 failed attempts at starting a picc line for the many blood draws she needed on a daily basis, apparently she has flat veins that round caths don't like to go in! So she had a central line put in.

She had 2 endoscopies and a colonoscopy. They took some cells during the tests and think she has a problem with her milk she got in her feeding tube, she apparently has a allergy to the type of protein in it and that is what caused the ulcers. Her seizure medicine she spent years on also causes ulcers so we are off that now, and on no seizure meds as of yet, they want to see if she she managable off medicine. So far so good.

She is on a new formula and 2 medicines and will be pretty much forever I guess. Prevacid for acid control and Carafate to coat her stomach.

We did a lot of praying that we would be home for Christmas and I am beyond excited to have her well and home now. This was the sickest she has ever been in her life. They said we can pretty close to losing her those first few days, due to her hemoglobin dropping so low. But the little miracle she is, with all the courage and strength she carries around, she showed those doctors a thing or two and has more or less made a full recovery!

Thanks for all the prayers you have sent, and to our family who helped us during our stay. Thanks goes out to those from church her brought food, and visited and prayed for us. That love really helped keep our spirits up. There isn't a thank you card big enough for all that was done, and we are so very grateful and humbled by the outpouring of compassion. THANK YOU!!!!

Update

Sorry I didnt update as I said I would,yesterday and the day before were kind of busy and I didn't make it down to use the computer. Today Dad is here and I have the netbook here for a while.

Still bleeding, and still no new answers. They discountined her seizure medicine because it can cause ulcers, maybe that is our answer but they don't think so for whatever reason.

Friday we got an ultrasound of the kidneys done. They look fine, as do the spleen and liver, which they had tested earlier in the week.

Her heartrate was high again yesterday, but labs all look good. They wondered if she was in pain, but she seemed very content so I don't think she was. So today we are doing a CT of tummy and intestines (I think both spots), we are just waiting for them to take her down and to give her some barium

Tomorrow they will be doing a RBC nuclear scan or Red blood cell scan. If her bleed is big enough it will show us where its at, but both the doctor and the radiologist think her bleed is small, so doubt it will show much. The next step will be to scope her again down the mouth and check to see if the ulcers they found her tummy or bleeding, if not they will go into the intestine to look, which is a surgical thing. We have wanted this done all week and frustrations are high because every day she has bloody diapers and everyday we get told to wait and see if the medicine they have coating her stomach works.

Please pray we will get answers soon so we can go home.

A very sick girl...

Emma is at Children's hospital in Oklahoma City. We have been here since Saturday. She has been admitted with a GI bleed, which is something very new for us. A lot to update on what has happened the last few days, will have to try to be as simple as possible.

We were admitted following a bloody diaper at home, she has had several since then. Over the last few days she has had 2 blood transfusions, an endoscopy and a colonoscopy, which are fancy names to say she has been looked at down her mouth and up her bottom. They found 5 ulcers in her stomach, which were not actively bleeding. They have medicated her to see if that helps, but today and yesterday she had bloody diapers again, so there is a chance some of the ulcers are in her intestines and they will have to go in and operate. As of now its all "wait and see if she has bloody stools some more" which is really frustrating to say the least. They did biopsies during the scopes but the results are not back yet, they don't expect them to show anything but they are done as a precaution

She had a central line placed yesterday because they are taking blood ever 6-8 hours and need to have good access. They tried to start a PICC line two times and could not. You can google those terms, if I just completely lost you. I am sorry I am just in hospital mode language right now.

We just want our girl well, if she could be home in time for Christmas that would also be great. No children under 12 can enter the hospital due to Swine Flu fears, so Ella and Derek have not seen their sis all week and I hate to think of them not being with her on Christmas, let alone how I will split my time between here and home.

I just found a wonderful room called the "Ronald McDonald Family room" here in the hospital where I have access to a computer so I will try to update as much as possible. I plan on daily updates, more if possible.

Our Church family has been great, with visits to see her the last 3 days and a group of ladies that will be bringing meals by to Daddy and the other 2 kiddos. Its nice to have them there for support, along with our family.

Immediate pray needs are 1. Make the bleeding stop 2. Let us get home for Christmas and 3. That her blood work and electrolites stay where they need to be so we can avoid more transfusions.

Will update as soon as we have some more answers.

Nov 13, 2009

Parent Teacher conference for Derek and Ella was this morning. Overall, things went well. Apparently I have 2 smart kids, well mannaered, but one is kind of messy, that would be Derek. He gets that from me, I was the same way as a kid. I was hoping my ability to keep house neat as a grown up and suchwould rub off on him, but apparently not.

Since Emma doesn't go to school, I had a confrence with myself. It went something like this. TeacherMe--Emma is doing well with her stretching MommyMe--That is great to hear! TeacherMe--yes but she is so tight on that right side in her arm and her knees need work MommyMe--Oh ok I will work on that, since you guys only work an hour or hour and half a day, I am sure I can find time in my super busy schedule to work in more time. HA HA.

Actually, to update Emma is doing very well, she does tend to stay pretty tight with her right arm, and her knees, but her hips are still doing great since surgery. She learned a new skill, sometimes but not all of the time, when I am kissing her cheek she will turn her head and point her mouth at me and kiss me back, she doesn't puker up just sticks her mouth by mine. Its slobbery and icky wet but its a very great kiss, one of the best kisses ever. She still doesn't make a lot of purposeful movement on her own, and that is one thing she does do so its excites me a great deal. Of course when I want to have her show someone like Nanny or Mimi she won't do it! But dad has seen it, and if I ask really nicely she will usually do it, I will try to make video of it. She spends her days watching tv, listening to music, or having Mommy move her around and read to her. I just got her a new book at the book fair from school, its called "Emma's Very Busy Week" it looks cute.

So no big update, but wanted to post something so I could attach some new pictures of Emma, and a few of Ella I took and love. They are both growing so big, I can't believe they are 5!

Random pics

Some random pics as of late. Emma on her birthday sleeping, the cake Ella made them, Ella and Emma at the school play ground, and finally my new fave pic of Ella. She is holding cousin Killian and made him go to sleep, what a little Momma. Don't forget to see the pics bigger all you have to do is click one!

Finally an update and Halloween pics

Please forgive my neglect of the blog recently. Not much in the blogging mood, too busy enjoying life, which has been very good to us recently. Emma is doing fabulous. No sicky icky germs as of yet, even though a few weeks ago the entire house was sick. All the kids have had the seasonal flu shots as well as the first dose of the h1n1 vaccine. No tears at all either time for any of my 3 big kids, I was so proud.

We are greatly looking forward to Thanksgiving this year, if plans go right Emma's Aunt Adam will be in town to visit. He as you know is in the Army and is stationed in Arizona right now, but will be making a trip to Afghanistan early next year as it stands right now, this after just getting back from Iraq earlier this year.

We love fall time anyway, will be looking to change the blog layout soon, so that we look more fall like.

Halloween went well. We went to Fall Fest at our wonderful church. Derek was a skeleton, Ella dressed up like Hannah Montana/Rock star and Emma wore a cute little pair of pumpkin pants and a shirt with a little girl witch on it that said "too cute to scare" it was cute. We got lots of candy, got to have fun and see our friends, and learn about Jesus.

I will be posting another post shortly with some random pics of the kids. My laptop was not working very well the last month or so, but thanks to Darren it is now, and I can post pics again!

God Bless all our dear friends, we hope fall is bringing good things to you and yours.

Birthday, flu shots, and being sick...

Derek, Ella and me (Mommy not Emma) have been passing around some sort of sick colds or something for about the last 2 weeks, which is why no updates for a while. Mommy was just too tired! Everyone is doing better, but Derek stayed home from school today. He went on a cubscout camp out this weekend, because he was feeling better and got to feeling worse from sleeping out in a cold tent. He also ran into a tree and scraped up his face pretty bad. Thank God Emma has not gotten super sick, but has been a tad bit gunkier.

Last Thur we all got seasonal flu shots, Emma did great. Ella ran a little bit and we had to chase her down and hug her tight for her shot, but in the end she never did cry over it. Derek sat down and took his shot like a man. Didn't even say ouch or anything.

Friday the girls turned 5! Can you believe it? My little miracles made it to 5 years old, there were so many days back in the NICU that 5 years seemed impossible. I am so proud of them both. They got some great gifts and love them all.

Since the first week of Oct, I have been fighting nerve pain/palsy in my left hand so typing is no fun to me. Imagine your hand feeling like its constantly asleep and when you use it, its all pins and needles. I am doing home therapy on it and trying to rest it, hopefully it will heal on its on.

Please everyone pray for Emma's Aunt Lisa aka Mimi. She was in the ER last night and her blood work came back saying gallbladder problems, she is set for an ultrasound in about 2 hours to figure out what needs to be done and how bad it is. We are hoping she doesn't have to have surgery, and praying her pain stops soon. Will update you all as I can on that.

Bless you all for hanging tight and still reading our blog, I know updates have been few and far between the last few months, I will try to change that soon.

September 22, 2009

Things have been busy recently so I have not had a chance to update. All good things happening so no worries.

Yesterday Emma got her last 3 immunizations. She did well, only cried 2 little tears. Ella went with us and she held Emma's little fisted hand and told her not to be scared, it was so cute. Afterwards we went to the dollar tree, where Emma got a stuffed doggie for her bravery and Ella got candy for her kindness to her sister.

We went to church this last sunday, it was the first time in I don't know how long. No rain and it wasn't hot so we went. It was nice to get back, and I am hoping we continue to go. But with swine flu being a big scare I am really trying to keep Emma away from crowds, so we will see. Swine flu, what a topic. It really gets me worried. Most of the children who have died from it have under lying problems like lung issues or neurological problems. Sounds a bit like Emma doesn't it? So of course that makes me worry for her. I know that Ella and Derek's teachers are doing all they can to keep the kids well, they have hand gel to use and have been teaching how to cough or sneeze into the crook of your arm and not all over your hands or out in the air. I am still iffy on the shots, I worry they might not be safe. But we will all be getting our regular flu shot on Oct 15.

Derek has joined cubscouts. He is going to the Wichita Moutains for a hike this weekend. I wish we were going with him, but Darren has to work. They will be going to the top of Mt Scott (you can google that if you aren't from OK) which is something I did when I was around Derek's age. I spent quite a bit of time down in that area, since we grew up down there and its a beautiful place. I hope he has fun.

That's the update for now. I am going to work on the blog some, I have been wanting to make a page for some time, where you can click and just get a short summary of Emma's life and what her issues are and read about how awesome she is. That way new people to the blog don't have to read all the old posts to catch up.