So much to say...

We are now on our 10th day of this whole ordeal, and we are finding that we keep telling our story over and over and over again. It is tiring, both mentally and physically. So, this blog is my attempt to write it all out, and so I will have a place to post updates that are too detailed for Facebook or Twitter. So, here's the story...

Friday, July 23 - Grace threw up at 11 PM. We were in Atlanta with the kids and my parents for the weekend.

Saturday, July 24 - Went to the Georgia Aquarium (awesome!), Grace was ok but got sick again Friday evening.
From then on, she threw up once or twice a day and had diarrhea once or twice a day. On Sunday and into Monday, she became increasingly lethargic. Slept pretty much all day long, except waking up to nurse.

(The kids and I came back from Atlanta to Montgomery with my parents on Sunday evening, and Justin stayed in Atlanta to attend RUF training for the week.)

Tuesday, I took her into urgent care. They sent her to the ER. Started IV fluids. Was admitted for severe dehydration. Tested her for tons of different bacteria, viruses, strep, flu, meningitis. All negative.

Doctors were pretty certain that it was a virus and something that just needed to run its course. Continued vomiting, fever, diarrhea, although the fever and vomiting subsided on Thursday or Friday.

One major issue that we had at the hospital in Montgomery was difficulty drawing blood. She was so dehydrated that they had a very difficult time finding any veins to stick, and when they did stick her she didn't bleed very much. At this point, she has probably been stuck over 30 times, 10 times alone from the neck up. It has been awful to see her get stuck so many times!

In all of the time she was in the hospital receiving hydration, there was really no change in her energy level. Still very lethargic, sleepy. Not even sucking her thumb -- didn't have the energy to put it in her mouth, I guess. We haven't seen a smile or her precious dimples in 10 days. Mostly just a bewildered look.

Again, doctors kept saying, "We really think it's a virus." A family friend who is a pediatrician in Montgomery told us that there is a pediatric GI specialist in the hospital and recommended that we request a consult with her. (Still unsure as to why her doctor didn't request it, except that he was so convinced it was a virus.)

We saw GI on Friday, and she suggested that it might still be a virus or possibly celiac disease. She started her on a naso-gastric (through the nose) feeding tube. The body needs nutrition to heal, and Grace was not getting any nutrition other than breastmilk, which at this age is not enough to sustain her. We offered her cereal and baby food, but she refused, for the most part. So, the NG tube seemed like a good thing.

As I said, the vomiting subsided, but the diarrhea continued, therefore dehydration continued to be an issue. On Saturday night, Grace's hands and feet started turning purple, blood pressure was low, became extremely lethargic very suddenly. Her IV went bad, and the doctors were having extreme difficulty getting a new line in. SO SO SO SCARY. At that point, they decided to airlift to Children's Hospital in Birmingham. They continued working on a new line while they waited for the helicopter and finally had to start a central line in her femural (?) artery. By the time they put her on the helicopter she was stable, which gave us great relief, but I can honestly say that those few hours before that were the most scared and sad I have ever been in my life. It was an extremely critical situation.

We got to Birmingham at 2 AM Sunday morning, and Grace was resting peacefully in the Pediatric Intensive Care Unit (PICU). She was very stable at that point, so we were able to rest peacefully for 4 hours at a hotel. (Parents can't stay in the PICU overnight.)

Yesterday was a pretty slow day, as far as any action was concerned. Not much goes on in the hospital on Sunday. Their goal was to make her comfortable and to get her properly hydrated. The PICU staff has been doing an excellent job of replenishing all the fluids that she has been losing, and she has been much more alert and aware (and fussy!) in the PICU than in Montgomery. In Montgomery, her fluids simply were not being replenished quickly enough, which is what led to Saturday night's catastrophe.

Today's theme would be nutrition. There have been some communication/decision-making issues regarding the best way for Grace to be re-nourished. She is VERY malnourished at this point. With the diarrhea, everything she takes in goes straight through her, so until that stops nutrition is going to be a problem. She is nursing but does not want to eat other food and refuses to take a bottle or formula. (We have tried at home many times, but the girl does not like a bottle!) The NG tube was gone when she got to the PICU...I think the doctors/nurses thought that since she was breastfeeding, she was getting nourishment, until I explained to them that my milk supply isn't high enough to nourish her. So, they put the NG tube back in, then in the middle of the night they changed their minds and quit giving her NG feedings because they don't want to force feed her if her tummy isn't ready. And, then I had to explain to them that she won't eat. With so many doctors, nurses, residents, fellows, specialists, some things were not getting communicated.

So, now there is going to be talk about whether tube feedings should continue, or whether she should be TPN for a time to allow her intestines to heal. (TPN...giving calories, nutrients, etc through the IV into the bloodstream.)

Grace was stable enough today to go to the step-down unit -- the Special Care Unit. The main reason for this and not going to the floor is because she still has the central line in, which has a very high risk of infection. They hope to start a pick (?) line, which utilizes ultrasound to find a good vein and allows for fluids to go in and blood to be drawn out from the same port. They really want to close the central line soon, to reduce the risk of infection. We hope this works, because we think she's had enough with the sticking. Probably 30 times now.

So, main things: diarrhea, central line v. pick, nutrition decisions.

We will see more GI and a nutritionist this afternoon, and hopefully things will start moving in the right direction.

Justin and I are SO TIRED. Being in the hospital is draining. We are in remarkably good spirits for the most part and can only attribute that to the prayers of so many. The Lord is sustaining us in this very difficult time. We are fairly confident that Grace is going to get well again and out of the hospital at some point, but the longer we are here, the more tired we become.

We have had so many kind offers for help, and we are so so so so so thankful. We have more offers than we can take people up on, which is a wonderful problem! Your prayers mean more than anything, and we truly believe that the Lord hears them and is answering them! He is so good to us.

This is a long and probably disjointed post, but I needed to write it all out for myself. I'll re read it at some point and fill in the gaps. Will continue to post on Twitter/Facebook, but will post on here when there is more to say.

Thank you for loving our family! Oh, and our boys are doing great at GG and Grandaddy's house in Montgomery. Please pray for them. Of course I worry about what effect this might be having on them. We can explain some things to Knox (3 1/2) but Owen (2) has limited verbal skills and it's hard to know how much of this he is or is not understanding. We know that they are in excellent hands and are thankful.