Alivya's new glasses

Hopefully these will stick around longer than the last pair.

A bunch of movies.

Not sure why YouTube made this one wide screen. Maybe I screwed up the iMovie project.

Mon Amour

Is 6 years a long time? Sometimes I think so, but yesterday I was reading about a couple who had been married for 54 years. So I guess that makes 6 years sound like nothing. Anyway, six years ago today Jon and I were married, finally. We dated for four years, and spent the better part of three of them planning for the big day. Everything was perfect, but it fly by so fast. It really was like a heart beat in time. Its hard for me sometimes to believe that it has been that long, or at least that I am that old :)

Everyday I still feel so lucky to have married the most wonderful man I know, my very best friend, someone who knows me and loves me better than any other. Together we've been to hell and back, more than once, and while our journey has left its scars, our union endures. There is something amazing and miraculous about this, it is indescribable.

Jon, Happy Fathers Day! You really are the best dad our children could ever have. Happy 6th Anniversary, I love you so much!

Update

So life's been pretty busy around here. I am about half way through this CNA program that I need to get on with the nursing degree I am trying to attain. I was just informed by the tech that they have suspended admission to the actual nursing program and canceled my previous admission... so I guess I have to go through the LPN program. Its simply annoying. I hate hearing about how much of a "shortage" of nurses there are when the programs are simply so unaccessable. I also hate that there is this idea out there that school is such a great alternative to the problem of high unemployment rates, the fact is that the school told me that the "displaced workers" were the cause of their suspension... how does that work?

Anyway, this was supposed to be about the kids. Taylor ate two whole strawberries the other day. Why is this so special? Well the remainder of his oral aversion and dysphagia really has been a strong aversion to fruit (minus bananas) and some difficulty with chewing at times. So two strawberries is huge, and he asked for more. He also ate a small handful of red grapes the other day, and has asked for more since then... though he didn't eat them. Taylor has been loving their little wading pool. He likes to pure the water on the grass. He is super smart and always very creative. Taylor still wears orthotics to help support his ankles, and falls a bit while playing. None of that slows him down though.

Livi is as sweet as ever. She is very vocal when she wants to be. She is using full sentences when making requests like "may I please have some more juice." So grown up. She likes to copy us, and take charge. She doesn't like walking barefoot outside, and still loves books. She would read all day with anyone whose voice could hold out.

Ava and Wes are growing, probably over 13 and 10 pounds respectively, but they have not been weighed in a few weeks. Wes is starting to eat more during each feed and starting to have more awake but content time. Slowly things are improving. Most nights they sleep through 10 hours or so. Our little vacation has definitely helped us some. Wes' smiles are few and far between, but I have noticed more social embraces from him, and smiles probably aren't far behind. Ava is usually full of them. She loves attention, and gets pretty upset when she doesn't get it when she wants it.

Kids, we’re going to Missouri

Very early Friday morning Jon and I got up and began our “vacation”. Those of you who know us, know that this term is very loosely interpreted to mean, time spent away from home/ kids. We left the tiny twins in the care of my sister, and packed up the “big” twins for the trip. We left Appleton around 7:30am and arrived in Columbia, Missouri, around 6:00pm. We stopped for a picnic lunch in Iowa City where the kids got out and played to their heart’s content. It was long and tiring, but totally worth it. Taylor and Alivya could not have been better. They ate dry Cheerios with milk in their cups for breakfast, snacked on animal crackers and grapes, and for lunch, peanut butter sandwiches and apple juice. They were entertained by multiple videos on their portable DVD player, books, and their “computers”. Towards the end of the long journey, Livi was getting tired and whined a little, but all was good when we finally arrived. After dinner their Aunt Sonja took them to bed and read a book, which they fell asleep only part of the way through. All in all, they handled the long trip very well, probably because they didn’t really understand that we were actually going somewhere.
Saturday morning we got up leisurely, ate breakfast and headed out to a local park. The kids played on the playground and admired the local geese, which is very neat to a three year old. Then we had lunch at a local Mexican place, ate well, and headed to another park. There the kids were encouraged to run in the water spurts, but were totally terrified. It was the sort of day where the skies were blue, but the clouds passed lazily between the sun and the ground shading everything for several minutes. During the shade it was perfect, but when the sun peeked back out, the heat was unbearable. Since the spurts scared them, we decided to try a local beach. There the water was cold and I think the sand freaked them out. They probably would have enjoyed it if I had left their shoes on… at least that didn’t bother them a few days ago when the rain stopped at home and they both climbed into their water filled sandbox. Anyway, Taylor cried and clung to Jon like he was about to be swept off to his death. Livi allowed me to walk her in up to her waist, but then refused to go any further. Jon ended up taking Taylor to the spurts area, and I sat in the lake with Livi. After an hour or so we went back to the beach and dried off. The kids were so worn out again, that Greg read them right to sleep.
Today Greg made Livi her favorite breakfast (of the month) French Toast. Both of the kids ate really well, I am hoping for some really nice gains in their growth chart at their appointment in July. We went for a long bike ride down one of the many bike trails. Greg thought it was about 8 miles… hmm, I don’t do that every day. The kids, who rode in their awesome bike trailer, were totally burnt out! We got a quick bite to eat, and headed out to the Ozarks. It was a bit of a drive, but the kids had a blast on yet another playground. They loved swinging with Greg, and we had a little cook out for dinner. I suspect they will be totally worn out and fall asleep again during their story. Actually I am really surprised that they are still awake in the car.

Ava and Wes, have been running their brave Aunt ragged. Westli cried and cried all day long on Friday, we heard. I swear that people don’t believe me, but he does. I can’t wait for the day that it turns off, I just have to keep reminding myself that it will. I feel so bad for him because I strongly believe that reflux is behind a lot of it. Ava was a perfect angel, so I heard. I talked to Amy on Saturday afternoon, it sounded like she was having a much better day. Wes, probably worn out from Friday, was resting comfortably to that point. I don’t know if Auntie Amy will ever volunteer for extended stay babysitting again, but Mommy and Daddy really, really, appreciate it. This little trip was very much needed.
Tomorrow we are meeting one of our fellow bloggers, the McTriplets. I am not sure I would have made it through the early days of parenting my special needs children without the support and inspiration that I found on their blog. Their kids have over come a number of the same obstacles that our did and then some. Mommy McTriplet is a strong supporter of and very much involved with her local chapter of the March of Dimes also. Raising three children all with unique needs related to their prematurity sometimes reminds me how “easy” we have it, but mostly reminds me that the chaos I live in happens in other homes too. Taylor and Lorne, both being children with prematurity related feeding disorders, have a special bond that really has brought our families together. I am super excited to meet all three of her miracles and to thank her for sharing their story and helping us through some of the toughest parenting situations we’ve faced.

Take Two

A phrase that describes my life more and more these days. I had my first official class in my new pursuit of my nursing degree. I am hoping to meet with someone about my transfer status in the next week or so. As for today, I officially met the requirements for handwashing, donning PPE, and measuring weight...shew, I was worried [sarcasm implied]. It was refreshing though to be back in the game. I might be ill, but I have always enjoyed the thrill of taking tests after its been a while. Yeah, that must be an illness...

The NICU follow up yesterday went exactly as expected. They were very pleased with Ava, she "tested" out at 2 months for every skill except Gross motor, which they thought was 2-3months. Wes tested out at 1-2 months for everything. Since their adjusted age is about 1 and 3/4months, they are both considered on track. Everyone was happy and pleased with both of them. The doc suggested that we try some Mylanta for Wes before each meal.

Well, one should go prepare for dinner since all four of my children are "napping", I love these moments...

I am so angry

Thanks to the readers who left comments alerting me to the sittuation with Dakota. I have decided not to draw more attention to her and her family by posting the link, but I feel so outraged that I have to comment on the sittuation itself.

Dakota has been the victim of her mother's need for attention. After months in the intensive care unit, Dakota's mother was placed under surveillance and caught applying feces to her G-tube... the source of the dangerous infections that could have taken her life. She has admitted to applying it several times over the past several months for the attention she received, primarily from her blog.

Call me naive, but I began searching for other families who faced real challenges related to the prematurity of their children, families whose real stories could inspire me and help me through the difficult times dealing with my special children. When I started reading about Dakota over a year ago, I really believed she was like Taylor, very special. Tonight my heart aches for her, her siblings, her father, and I am sincerely grateful for the doctors and nurses and medical professionals who took the time to get to the real bottom of her "illness". I believe that her life will be better going forward as a result. I assume her mother will never become the nurse that she expressed such a desire to be... more lives spared... I hope that Dakota can and will make a full recovery and begin enjoying the life she should have had all this time. I never imagined how much damage a few of my clicks could and have had... as I fed into her desire for attention.

I haven't figured out how to apply the lessons learned here to my own practice as a health care professional, nor have I figured out how to move on from the disturbing images that it all caused me.

To the other families with whom I have connected and taken inspiration from, I still believe there is a role in blogging that helps families like ours. I hope this woman's severe illness doesn't stop families from searching for the real connections that we've made and the support that can be found here, but I know that for now, my world has been shaken...

Sincere disgust, disappointment, and sadness...

NICU Follow -up Clinic

This afternoon we'll take the babies to their first NICU follow up clinic. I think they will be impressed with Ava. She has had tremendous weight gain, eats well (despite her frequent vomiting... which is getting better), and is smiling socially, starting to poke at her toys, fix her eyes on objects and demand attention. She's also been using her hands and fingers to suck on and provide comfort when we can't be right there. If memory serves me right, and it rarely does these days :(, these are all developmentally appropriate things for a baby that is between 3 and 6 months.

I hope that they will be impressed with the progress Wes has made in terms of feeding. I think they should be happy with his weight gain, which has been sufficient but maybe not ideal. Wes occasionally seems to be smiling socially, however these are pretty limited for Daddy's benefit only. I would say he is a few weeks behind where Ava was with this skill. Wes is tracking objects that make enough noise to keep his gaze, and starting to explore his hands in his mouth. He doesn't have many comfort skills yet, and spends way too much time screaming, but I think I can make a good case for reflux on that front. I think the Prevcid is controlling the reflux better than Zantac, but I can tell that it is still very bothersome. Wes often has sour smelling breath, continues to carry a worried expression on his face, frequently grimaces and now sometimes actually brings up food so that I can see it in his mouth. The reflux strider seems to have stopped however. I plan to discuss this with his pediatrician to see if adding another type of medication would be beneficial, or if we can up his dose. Symptoms are definitely more present in the mornings and about 6-8 hours before his next dose is due.

So, we'll see how that goes.


On a side note, Dakota's mommy, if you are reading, I can't seem to get into your blog anymore... please leave me a comment... been thinking about you all.