Can we go home now?

Although I haven't posted any news about Grace since Thursday, I have been pretty thorough with my tweets. In case you have missed what's going on...Thursday was a great encouraging day, but things went sour late Thursday night/Friday. Here's the rundown:

On Thursday, doctors were continuing to increase the volume of Grace's feedings every four hours. On Thursday evening, they began her continuous feed (i.e. through the tube at a slow interval for 12 hours), which she had done well with the previous night. However, Thursday night's feed was a significantly higher volume of formula, and she did not tolerate it well at all. She tried to sleep all night long, but kept stirring every few minutes (or less) in apparent discomfort. Then, every hour or so, she would have a major blowout in her diaper. After this went on for a while, we decided to inform our nurse, which eventually led to the feed being stopped for the rest of the night. It was very important to increase the volume of her feeds up to the normal amount of calories for a 9-month-old, but her gut simply was not ready to tolerate it.

On top of stopping her feeds, which was disappointing, she pulled her IV out of place sometime in the night. After two failed attempts to start a new one, the nurses decided to wait for the "super sticker" to come in and do it later in the morning. ("She could draw blood from a rock.") So, by early Friday morning, Grace was becoming dehydrated again, due to the loss of fluids. A major step in the wrong direction and so disheartening!

When doctors did rounds, they decided to put Grace on TPN (total parenteral nutrition, i.e. nutrition through IV) for the weekend to see if that would allow her gut time to heal. They also gave us the option to stay on the floor or move her back to the Special Care Unit, I think mainly for our sakes more than for Grace. They could tell how exhausted we were and were willing to give us a break, which we gladly took. As I've said before, being on the floor is good because you're with your baby but exhausting because it is constant.

During rounds, the doctors also mentioned that they think they have pinpointed the specific type of virus Grace has/had -- Calici virus. In the same family as Norwalk/Noro virus. This information is really irrelevant, as these are just some of many of the types of viruses people might have when they have the stomach bug. Grace's symptoms have been atypical of this particular virus anyway. What is significant is just that they are more certain it is a virus and not something else.

So, Friday, they got a PICC line started and moved her down to Special Care around mid-day. Before she got moved, the boys and my parents came for a visit, so they all got to see Grace and spend some time with her. Grace was pitiful that morning, and she really and truly perked up when she saw Knox. She didn't smile, but she just got more alert and attentive all of the sudden. It was precious. I think he was good medicine for her. Before they left, she was crying, and when Knox kissed her on the head and she stopped. These were sweet moments in an otherwise disappointing day. We had a great visit with the boys and are so thankful that they seem to be doing really well considering the circumstances.

So, the plan for Grace is TPN for the weekend, then possibly beginning feeds again on Monday or Tuesday. Pray, pray, pray that her stomach/intestines will be able to tolerate it and that she will get on and stay on the path to recovery! She has had fewer dirty diapers today, which positively indicates that the problem really is that her gut can't handle food yet and not some other strange problem. They are also running some tests to check out her immune system, because this virus has lingered for so long, which is unusual.

Today has been a slow day. We spent several hours this morning and this evening in the SCU. She was very tired and really looks so sick. Being in the hospital does not do good things for a person! She has really dry, peeling skin from the dehydration, she's lost weight, her hair is dirty because she hasn't had a real bath in 12 days, and she just looks sad. It is pitiful. And, today I came to a point of real anger and frustration about this whole situation. I wish I could wave a magic wand and make her well. I want my old baby back -- the happy, smiley baby with chubby cheeks and precious dimples. I want to go home with all of my kids to my small house in my small town and just live our lives like normal. I know this is going to happen, but it's not happening quickly enough! It's hard to be ok with the fact that we are probably going to be here another week. It's not ok. I really do believe that God loves us and is using this for our good and hopefully for the good of others, but today it is hard to rest in that.

On a lighter note, we discovered last night that Grace has her first two teeth! Kind of ironic that she would get her first two teeth on the day that she is banned from eating. We've been wondering when they would show up and can't wait for her to show them off when she starts smiling again.