I needed that

Hope had a good day today. We really needed it. I got to do kangaroo care for an hour after I got there. She was awake and kept grinning at me. A couple of times she did these big, scrunch-up-her-whole-face smiles. I loved it! It was so good to see her feeling better. She was much more alert and active than she has been these past few days. She was really enjoying her binky too. I got a kick out of the way she was holding onto it. But this afternoon she got down right feisty. She kept pulling out her cannula and she would get pretty upset whenever a nurse would come fix it. (By the way, her oxygen saturation stayed in the 90s even when it was out.) Then she was screaming and flailing while I tried to take her temperature. (When I say screaming- it looked much worse than it sounded.) She was tired of people messing with her and she was letting us know. I can't say I blame her - I'd be mad too.

Other things are looking better today too. There wasn't any blood in her stool today. There is always blood there because the stoma bleeds when it is touched, but that is normal and they say she doesn't feel it. The area between the two ends of the bowel which are sticking out is having to be addressed. The skin has come apart, so they are irrigating it and packing it every 3 hours. But again they say this isn't uncommon and it looks fine. I'll take their word for it, because it looks pretty gross to me. But her lungs seem to be doing good. They've weaned her down further on her high-flow nasal cannula, so I'm hoping she gets off of it soon. Oh, and I found out that the nurse re-weighed Hope last night because I was so upset. Turns out, she was really 3 lbs 6.5 oz. She still lost, but that sounded much better to me.

The only hitch in our day was that Hope got a new roommate. Let's just call her "the Screamer." She's a very cute baby with a mop of black hair and big, wide eyes. And she seems to be very content - so long as she's being held. The nurses all just look kind of weary when they have to take care of her. I should have suspected something was up when this baby moved in with her own swing, bouncy seat, and stroller. Apparently they try everything to calm her down. This new arrangement might be interesting.

She's one of ours

Hope's eye surgery went well yesterday. The opthamologist was able to do a more thorough job on her immature eyes than she thought would be possible. So she may not need a second surgery. It's still too early to tell. But today when Carla and I went in to see her she was wrapped up like this. Carla was wondering why she was wrapped up so weird, like they were trying to tie her arms down. We asked the nurse if she had been pulling at her tube. "Well, she was doing that too. But I mostly did that because she kept putting her hand down in her diaper while I was trying to change her." Sounds like an Isaac kid. Now if she'd just have fingers in her mouth while the other hand was down there, she'd have it just about right. Maybe Andy or Mary can show her.

I just got off the phone with Hope's nurse. She just lost almost 6 ounces today. She's back to 3 lbs 2 oz. The nurse said it's no big deal- it was just fluid. But it is a big deal when you only weigh 3 lbs! That is so discouraging. If we don't get some good news soon I'm going to scream!

Hope had more blood in her stool, she lost 100 grams, and she goes back on the ventilator at 6:30 tomorrow morning.

Hope is scheduled for eye surgery tomorrow morning at 9:30. So please pray that the Lord will guide the doctors hands and give them wisdom. thank you for your prayers Mike

Rocking

Today I spent nearly 2 hours rocking my baby. It was so nice. And she smiled at me. When I first got there I leaned in and started talking to her. She opened her eyes and grinned. I know she's awful small, but I think this was deliberate. She smiled at me 3 or 4 times. She is 2 and 1/2 months old after all, even if she only weighs in at 1620 grams (3 lbs 9 oz). As for the bleeding... she did have some blood in her bag today. It was not fresh and again the doctor doesn't seem too worried. He said she's looking so good that he really doesn't think it's anything major. He gave her platelets today and was checking her iron levels. I'm not sure exactly what that is about. Please continue to pray for her - that we wouldn't see anymore bleeding. And again pray for her eyes and that feeding her will go well. Thanks so much.

Rough Day

Mike finished his training in Spokane and went home yesterday afternoon. I was supposed to follow this morning after stopping by to visit Hope. However, Mary got sick with a cold so we decided I'd better stay up here. So last night was pretty lonely. Then I got a call this morning just after 7. Wallace, one of our cats, had died. He had seemed fine last night, but they found him dead on the floor this morning. It was kind of hard to get the story because the kids were sobbing so hard. They buried him in the backyard. Add to all this the fact that Andy also woke with a cold, and Mike was having a great day. He decided to take the kids for a long walk to help them cheer up. I, meanwhile, headed to the hospital to visit Hope. When I got there Dr. Egger was waiting to talk to me. Hope had more blood in her diaper and in her ostomy bag. The doctor didn't seem too worried, but I was pretty scared. He suspected that she was having clotting issues because her liver wasn't working well. I'm not terribly sure how it all works, but apparently the IV stuff is hard on her liver and the liver contributes to clotting somehow. So he ordered a shot of vitamin K. I went to the pump room and called Mike to share this new concern with him. He was having troubles there too. Gabe had gotten sick while on the walk and was having diarrhea and they were trying to make it home. Aaagh! I went back to sit with Hope. They had already given her the vitamin k and were trying to draw blood to have some labs done. They couldn't get enough out of her arm, so they had to take it out of her head. I finally had to leave because it was taking a really long time and I couldn't watch anymore. Poor baby girl! But it turned out okay. When the nurse had done a heel prick earlier in the morning the blood had just kept oozing out. So the nurse explained that they were having a hard time getting this second blood draw because the blood kept clotting. This meant the vitamin k was working. Her bloodwork came back fine, which is great news. And each time they have done cares since then there hasn't been any blood in her diaper or her bag. Thank you so much, Lord! Gabe hasn't fared as well and has thrown up and has a fever. Please pray for all of our sick kids and for Mike, as he has his work cut out for him. Please continue praying for Hope too. I'm really wanting this to be the last of the bleeding problem. And continue to pray for her eyes. She will be getting checked on Mon or Tues. While your at it, would you ask that all goes well as they start back up her feedings either tomorrow or Monday? There is one last bit of good news. Hope is up to 1560 grams or 3 lbs. 7 oz. Yeah!

Improving

I just talked with Hope's nurse. She is at 1540 grams, or 3 lb. 6 oz. She has stayed between 1530 and 1540 for 3 days now, so they think she's gotten rid of the excess fluid and this is a true weight. Not too bad. She had a pretty good day today. There was some bloody, mucusy stool coming from her rectum, but the doctor didn't seem too concerned. There was evidently a little stuff left in there. He has decided to up her course of antibiotics from 10 to 14 days, but didn't act like he was worried. She has come down on her high-flow nasal cannula, which is really good. It would be so cool if she got off of her oxygen before too long. And the best part of the day.......I got to hold her for about an hour and a half. The nurse brought in a rocking chair and then handed her over to me all wrapped up in blankets. It was very nice.