20 weeks 2 days

It's been a long rough week. Let me start by saying Amirah is doing pretty well. She is getting bigger, (she weighs about 7lbs 4oz right now) and her lungs are improving. She had a follow up echo cardiogram on Tuesday and it looks as though her pulmonary hypertension has gone away, so they are weaning her from the nitric oxide again. She also had a follow up eye exam and her ROP has not progressed. Her blood gases go back and forth a bit, but the doctors are planning on slowly weaning her oxygen settings over the weekend. She still eats like a champ :) We aren't sure when she will be transferred to the Children's hospital, but think it should be in the next week or so if things keep going they way they are.

So, like I said, Amirah is doing great...me on the other... not so good. I have moments where I get overwhelmed with sadness and pretty much tear up and/or burst into tears. It doesn't make it easy to do "normal" things like concentrate at work or be out in the world. Seeing a baby or a pregnant woman sets me off too. It's not fun.

I went on a tour of the Children's Hospital today. The staff seems really great. Warm, caring, knowledgeable, helpful. I really glad about that. But I was really upset by the "institutional" feeling. It makes me so sad to think of her sitting in her crib in a room with 3 other babies when she should be sitting here at home with me and Andy. I try to keep the good things about it in mind when I start getting really upset... here are some good things about it:
1. Anyone, any age can come visit her as long as they are not sick. This means her cousins can come meet her. Olivia is especially looking forward to this. She was getting impatient I think because this week she suggested to her mother that maybe she could dress in a disguise so she could come into the hospital. For those that don't know Olivia, she is my 6 1/2 year old niece and she was also born about 3 months early.
2. It's one step closer to being able to come home.
3. They wouldn't send her there if she wasn't really stable. The Children's hospital does not take critical patients. They are sending Amirah there for rehab.
4. The visiting hours will work better for me and Andy to visit her right after Andy gets home from work. Currently Andy doesn't always get over to see her every day because if he leaves even 15 minutes later than his usual time we won't be able to get over to the hospital before the no visit times while the shifts are changing. This means we would not be able to go to visit her until after 8pm which means a late night. At Blythdale visiting is from 6am -10pm.
5. If we want, a parent can spend the night bedside. We probably won't do this right away, but will do it as we get ready for her to come home.

I know there are other things that I can mention, but those are the big ones.

Tomorrow Andy and I have an appointment with a therapist. I can't speak for him, but I am really looking forward to it.

Okay.. Since she asked lol.. Andy here. I'll try to be brief (No jokes about needing coffee now!) Well, we are both really struggling. I am finding it harder and harder to be around babies. Any stories about parents and children are hard. Its hard to feel like a parent. With work and travel, I feel like I am not getting to the hospital nearly enough. I feel powerless. and I am constantly feeling a little on edge. I am still trying to figure out what I am supposed to do, when really the fact is there is NOTHING for me to do. I hate it. Let's say I wouldn't wish this on someone I hate.

But other than that, things are great! I am not really sure what the therapist can do for us (I should really say me I think) but I am trying to ignore my suspicions about "therapy" and just be open minded. We will see how it goes.

The plus side, The best thing this week was holding Amirah, trying not to fall asleep while I am holding her (It happens EVERY SINGLE TIME, and I don't know why) and watching her watch me, and snuggle into my arm. Its amazing to watch her just track on everyone in the room. She looks towards whoever is talking, and she clearly can tell who is talking. She really listens to certain nurses, but the docs she kinda ignores :) The cutest and coolest thing was when I was holding her, she suddenly screwed her face up and let loose a cry strong enough the nurse heard her ten feet away. I just laughed, and rubbed her and talked to her for a second, and she stopped immediately. It felt really good to be able to get her to stop crying like that.

Okay, well that's all from me. Back to Jo

That's really all for now... we are just trying to be as patient as possible and some days are better than others.

As always, thanks for all your continued love, thoughts and prayers.

Oh yeah... for the first time today, one of the nurses told me that Amirah looks just like me :) It made me happy.

She looks just like her dad when she yawns...