Mamie's first smile

We think Mamie had her first reactive smile today. She smiles a lot in her sleep, but she was awake for this one. I was holding her and she just decided to smile at me. It was so cute!

Yesterday we went into the feeding clinic. I had expected better progress. She hadn't gained as much weight as they'd hoped. She's still in the 50th percentile, but I guess she was in a higher percentile before. So instead of taking out the tube like I'd hoped, they're keeping everything the same except giving her a little more through the tube feedings, and when I nurse, I should nurse both sides instead of all 30 minutes on one side. Basically, she just isnt' getting enough when she nurses. Either her suck is not strong enough or she just tires out or both. She does good with a bottle but I guess that's easier?

I have some really cute pictures to download when i get my computer working again. I had to get a new cord. I'm using Wade's now.

Today we went to the last Tuesday market of the summer, sigh. I guess the Saturday farmers market will go on till September or October though, but it is a little early for me. I like the Tuesday market because it is in the evening.

I am really looking forward to both my parents and my sister Kellie coming to visit next month. My parents have seen Mamie but not out of the hospital and Kellie hasn't seen her at all.

It's amazing how each little step has been such a big deal for us with Mamie. At first, it felt like a big deal to be able to just hold her little head in my hand. Then a few days later I was able to attempt to bottle feed her. Then when I was able to hold her on my lap on a pillow(on her tummy of course) and then try nursing her, and then they redid the one plastic surgery and I couldn't hold her even on my lap again. Then I could actually hold her again. Each little step has made me really appreciate each little thing more and not take it for granted. Mamie is such a little sweetheart. She really is a good-natured baby. Although I don't get as much sleep as I used to, I've definitely seen worse babies. She is pretty easy to calm although as soon as she loses that pacifier she starts breathing really fast and getting super stressed out.

She likes to stick out her tongue a lot and "taste the air". We call her our little lizard. She's so funny when she's looking for something to suck on and you stick the pacifier near her mouth. She so quickly finds it and gobbles it into her mouth. It's hilarious how fast she does it, as if she's never been fed and this is her only meal.

Wade's blog is pretty funny so make sure to check it out. I especially like his Battlestar Galactica analogy.Bye!

We have a thumbsucker

Little Mamie is getting better and better at finding her thumb when she wants it. It is so cute. Sometimes she'll have her pointer and middle finger on either side of her nose while she's sucking her thumb. We took her on her first outing (besides doctors appointments) on Saturday. We went to see Wade's brother Parker's band, "Lindsey Pool" perform at a street fair thing. The drummer's brothers baby was born the same day so we took a picture of the babies together.

Wade and I had quite a time switching Mamie's feeding tube to the other nostril the other day. We tried and tried and tried and she screamed and screamed and screamed and we kept hitting a wall or it would come out her mouth instead of going down to the stomach. Finally we temporarily gave up and then tried again later after we'd given her her sedative and we got it. But then the next day she pulled it out and we had to put it in again. This time we waited till after we'd given her the sedative to even try, but she still got very mad. A few times we even thought we had it but then tested it with air to make sure we had it right and we didnt' so we had to pull it out and try again. Finally we got it. This time I taped it on with a stickier material that we use for her would care.

We had several appointments the other day, one being at the feeding clinic where we visited with our favorite doctor, Dr. Merkens, among others. We worked out a much better feeding schedule so that Wade and I could get some more rest. They said just try to nurse 3 times in a 24 hr. period and if she doesn't go for it, don't worry about it or trying to make it up later. Wade will do one bottle feeding, and we will tube feed the rest. I dont' have to pump as often either. We were very relieved by the new schedule.

Wade recently fell while in the bathroom and hurt his chest area very badly. He wondered if perhaps he may have hurt, maybe even broken a rib. He wound up going to the doctor and they said there was no point in doing an x-ray because if it was broken there wasnt' anything they would do about it, so they just gave him some pain medication.

Sometimes we call our baby Mad-Eyed Mamie because of this funny look she has when she is laying on the side of her head. One eye is open more than the other and looking all around. It's very cute and funny.

Little Mamie

It's been awhile! Little Mamie finally came home on Friday. We were very excited but it's been exhausting. She's been on a schedule of eating every 3 hours. She has been making good progress with learning how to nurse but is not quite there yet. Sometimes she is just too out for me to even try. So when that is the case, we have to tube feed her. She still has the feeding tube that goes up through her nose down to her tummy. Both Wade and I were trained how to put it in. Each time we feed her through it, we first have to make sure it is in the right place but putting the stethoscope to her tummy and then putting in 5 mL of air. Then we attach the syringe and put in the milk. We each made the mistake of not plugging up one of the little entrances to the tube when we attached the syringe and lost a lot of precious breast milk all over the floor, but we are definitely learning from our experiences. Some times now I nurse her and then we tube feed (gavauge) the rest, and other times we gavauge all of it, like in the middle of the night. Hopefully she will soon be able to nurse only and we can take that darn tube out of her nose. She is constantly hooking her little finger around it so we have to be careful. It is taped to her cheek. Fortunately we have not had to replace the tube since she's been home, but we have had to retape it to her cheek a few times when it starts to come loose.

On her back is what's called a wound vacuum where a thicker tube sucks any gunk away from the wound. So we have to carry the vac around with her and be a little careful with that too. I cant' wait till our baby is not attached to any more tubes! I think they said we would probably have the vac 2-4 more weeks, but the wound is healing nicely. On Monday, we went in for her dressing change at 1:30. All went well and we were about to leave, but then she started having some fairly big twitches while she was asleep in my arms. We were right in front of the emergency room at that point, about to leave. But we decided this didn't look normal and wondered if it might be a seizure or something. So we were admitted and stayed in the emergency room for most of that night till we were transferred back to the NICU where she'd been before. We got an isolation room this time though because she'd already been home and they try to keep those babies away from the others because of germs. Long story short, they ran several tests and didnt' find anything. The pediatric neurologist concluded it was something that happens occasionally in babies, not anything to really worry about though. Although he did advise us to try to videotape it if it happened again. However, the nurse did notice that the wound on her stomach where the shunt goes down to wasn't quite healing properly so that got dealt with and dressed and we finally took her home again on Wednesday.