Our little sweetheart, Mamie

Mamie finished her last swim lesson this past week at the local rec center. It was Monday and Wednesday mornings for 4 weeks. Usually, after the swim lessons, I would take her and sit on one of the steps in the hot tub with her in my lap (she was not in the hot tub at all). Anyways, there was a water aerobics class for seniors at the same time and some of them usually went in the hot tub afterward. There were 2 ladies in particular that we would see nearly every time and talk to named Marty and Karen. They would offer to hold Mamie so I could get in the water, and they would just talk to her and wave to her and enjoy her cuteness. On the last day of swim lessons, the babies in the class got to go down a big water slide (with their mommies of course.) As the other parents considered whether or not they wanted to do it, me and Mamie were of course the first ones there, (adventuresome spirits that we are). I put on her cute life jacket that made her look like a marshmallow man and we went down 3 times! By the 3rd time, she was giggling. We came out of the slide right near the water aerobics class and all the old ladies were watching and cheering her on. It was so cute!

She has also REALLY been getting around! She army crawls her way around the house, we are thinking of getting a gate for the kitchen, cuz she eats all kinds of junk off the floor. She likes to go down the hall, especially if Wade or I is down there in our room or the bathroom. She has also started going down the 2 stairs to the family room. We definitely have to watch her when she does that because she goes face first and usually ends up rolling down them.

She loves to say hi and wave. Everywhere we go, she smiles and waves at people. But the best is when she actually says hi. Its so cute, and people never expect it because she does it completely unprompted. She just sees them smiling and says hi! She also loves music and you can never turn music on without Mamie starting to dance. She just waves those little arms so vigorously! We recently had the primary program at church and we'd hold her up a little on each song so she could see all the kids. She loved watching them sing, and of course participated by waving her arms.

When I tell her to do the wiggle, she does a cute little wiggle with her body and head. Today I said "giggle" and she thought I'd said "wiggle", so she did. When I say, "Give mommy kisses" she just kinda leans against my cheek for ME to kiss HER, I guess.

I've gotten her some new toys recently from Goodwill and the HUGE Pass-it-On consignment sale at the fairgrounds. I also got her a lot of clothes and was very pleased with my purchases. She has grown out of most of her clothes, so she really needed a lot, although I probably bought too much.

Mamie is such a sweetheart and we are thoroughly enjoying having the cutest baby in the world for our daughter!

April

I haven't posted on here in forever because mostly I've just been sending mass emails to family but I thought I'd post something for the rest of you who don't get regular updates.

Mamie is doing great. She got her braces remade today. They were going clear up to the top of her legs but these ones are only going to go to under her knee. For those of you that have not seen them, the braces she had had a really cute ladybug print on them. They have all kinds of prints you can choose from. I was excited to have new ones (for her), and Wade relented and let me choose the pattern I really wanted-skulls. She won't have them forever, so for those of you who think I'm crazy to give a 91/2 mon. old skull printed braces, it's just temporary. Well, they will still be for awhile, but someday we'll go to sunflower print. Before she was born, I had this joke with my sister Jeni about Mamie liking pirates. I don't remember how it got started, but that's where it comes from. And I think they show her tough personality. lol

Mamie is spoiled rotten by both sets of grandparents. And spoiled with love by all her cousins too. She is a VERY smart little girl and learns quickly.

Mamie is the happiest little thing ever. I could listen to her giggle all day. She LOVES to jibber-jabber and is such a chatterbox. She is always smiling and wherever we go, people are always commenting on how sweet and alert she is. She absolutely loves people and always manages to get everyone's attention-from sweet little old ladies, to cranky men who look like they don't even like kids but just can't help smiling in spite of themselves when she gives them her little grin. I think she thinks the sun shines just for her. :-) She can sit up, rock back and forth on all fours, roll over from back to tummy and tummy to back, and loves music and singing. She knows the word, "kisses", and loves to give mommy kisses, which mommy loves to receive, no matter how wet they are. She has 2 teeth with more on their way in. She loves to eat and although she had some initial trouble tolerating eating peas, she now eats everything we give her.

I've been having a lot of struggles with my epilepsy lately. I decided to try a new medication with the hopes that the constant sleepiness I've been experiencing my entire life might subside. Well, it did, but along came a whole bunch of other problems. After many months of trying to convert to a new drug, we came to the conclusion that it was not gonna work. I had more seizures since the beginning of the year than I've had since I was diagnosed at the age of 12. A few weeks ago, I had a several day inpatient EEG at the hospital. I don't remember it really well, because seizures do funky things to your memory and I had 2 while I was there. Well, the dr. put me on another new drug which seems to be controlling the seizures very well but I'm dealing with some other side effects. The dr. said they weren't typical for this drug, so maybe it's just my body dealing with these changes and I will get used to it and not have those effects anymore. So I'm just waiting and hoping they'll go away. I've had a lot of severe anxiety but I think it's getting a little better.

It sure is nice to not be so sleepy all the time though! It's amazing how much more time and energy I have! I've been having trouble falling asleep though. I just get so anxious and cant' stop thinking. When I first got out of the hospital, it was so hard to think that I could barely answer a question or make a decision. I still have trouble thinking of a certain word or way to express what I want to say, but it's gotten a lot better. I can take care of Mamie on my own now. The first 4 days of last week, I had friends and women from the ward "babysitting" me and Mamie till I was with it enough to care for her by myself. It has been a great way to get to know people and make friends though.

We moved into a house towards the beginning of the year which we are loving. Wade's parents bought it as an investment and we are renting it from them. It's pretty nice and has a big yard.
Wade recently got a job selling insurance so we're super excited about that too. Well, I will go give going to sleep another try. Sigh.

Mamie's feet

Mamie is doing pretty good. Wade accidentally pulled her feeding tube out on Friday (not as big of a deal as it sounds) and we decided to just leave it out till we went to the doctor on Monday. They said she had gained enough and it sounds like she's been eating enough so they decided to let her keep it out.

We went to the orthopedic yesterday and got some bad news. Her right foot is clubbed and the left one has a bone that is vertical instead of horizontal. Another doctor had told us that the funny shape of her feet was probably just due to weird positioning in the womb and the fact that she wasn't able to move them. Well, I was expecting that she would have to have casting or something sometime, I just wasn't expecting it to be as soon or as dramatic. The dr.said we could start the casting as soon as right then! for the right foot but the left was something he needed to find out more about. We'll have to come in weekly to have the cast changed. I was really hoping we were cutting down on these doc appointments :-( Just when we have the last of the plastic surgery appointments for awhile, along comes this. Also, he said after that they will have to attach her feet together with a bar to kind of train them in the right position. Full time for a couple years I think and then part time for a few more. I was not expecting that much at all. I just wish my baby could have a chance to be a regular little baby without all these extra things on her. We are going to get a second opinion about the feet though.

I posted a whole bunch of pictures here on my blog so make sure to check them out.

The latest

Today we had an all day appointment at the spina bifida clinic. We met with urology, physical therapy, Dr. Merkens-the main spina bifida doc and a social worker. Plastics also briefly came to do a quick touch up on her back. They put silver nitrate on the granulation tissue, it only takes a minute. Then we met with a "medicaid specialist" although I don't know how she can call herself such. Dr. Merkens gave us a new feeding routine to try. He said we can do all her tube feedings as bottle feedings first and then whatever she doesn't finish, just give through the tube. I tried to feed her her midnight feeding but she didn't want to wake up so I just gave it all through the tube.

I had a seizure last Thursday, as if we didn't have enough to handle! I had taken Mamie out for her 6 AM changing and feeding. She was on the changing table when I collapsed into a seizure. I have always been more prone to have them right after I wake up (although I haven't had one for 5 years) so for now on Robin is going to carry her to the changing table and put her back at that feeding.

Mamie is such a little sweetheart. She is getting more and more responsive and we're just sure she's gonna give us a big smile any day now. She laughed in her sleep the other night-it was really funny-she is quite a noisy sleeper, making all kinds of grunts and other noises.

I am very excited for my parents and my sister and her family to come this weekend for Mamie's baby blessing. It will be great to see them and show off my little Mamie.

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.