Hhhhhmmm....what can we say about today? We had some real low spots, but it ended well.
I had planned on coming up to stay with Hope for a few days. As I was loading up the car I got a call back from Hope's GI doc.
"Are you at the hospital?"
"No, but I'm on my way."
"How long until you get here?"
"A couple of hours."
"I'll come over and talk to you then."
Great.... he won't even talk to me about it over the phone?! This can't be good. Let's just say it was a very long ride up to Spokane. (Keep in mind that the GI doc had been waiting to hear from the kidney doc about why Hope's potassium periodically drops.) I envisioned all kinds of horrible scenarios. I called Mike and he headed up after getting off of work.
The GI doc showed up and told us that they still don't know what's going on with Hope. Most babies will grow on 110 calories/kg, but Hope is at 135 and still not growing. She had been 3.50 kg (7 lbs 11 oz) for several days. He was not sure if it was an electrolyte problem or something else. He mentioned a very slight chance that it could be a hormone problem. He also told us about another patient he had that had some bizarre genetic disorder. So I was pretty discouraged at this point. Top it off with the fact that the kidney doc can't run any of his tests until her potassium gets low again and they'd just given her potassium. So..... long story short, the GI doc decided to go ahead and progress her on feeds. He's going to go up until she starts to gain or until she starts having diarrhea, which is a sign that she's hit her max. I was feeling like we were going to become permanent residents of the hospital.
Then a wonderful thing happened. The nurse came and weighed her and she was 3.56 kg (7 lbs 13 oz). Yippee! Oh please Lord, let this be the beginning of an upward trend!!
I just had to post a picture of the cute little hearts that the night nurse made for Hope. Don't you love it? Now if they just came in pink... And by the way, Hope is now a big 8 pounder. She technically weighs in at 8 lbs 1.8 oz. This makes 3 days in a row that she's gained. We've been told that we will probably get the boot tomorrow. We'll let you know.
Hope gained another 2 oz today. Woo Hoo! Now maybe we can go for gaining 3 days in a row. She is now 3.62 kg, or 7.98 lbs. Eight lbs, here we come!
Hope's GI doc decided that she was growing and should have her tube pulled up into her tummy today. Then she got to start eating out of a bottle. To start, she got 30 ml every 3 hours. Now that she's shown she can handle that, she gets to go up to 45 ml every 3 hours. Every time her bottle feeds go up, the amount they give her through the tube goes down. I'm not sure exactly when she'll get off the tube, but it shouldn't be too far out. Next week I should be able to start nursing her. We should also be coming home sometime next week. However, it has been decided that Hope will need to get lipids 3 times per week while at home. This means we'll hook her up to her broviak at night and it will run while we're sleeping. Not terribly thrilled about having to mess with this, but we are going to be happy to be out of the hospital. We'll keep you posted on when that will be exactly.
Hhhhhmmm....what can we say about today? We had some real low spots, but it ended well.
