Last post of the year

I am not big on making New Year's Resolutions, but subconsciously I think I resolve to make more regular posts on this blog every year... I have noticed that I generally post the most in January and slowly slough off until there is like one or two posts in December. Sorry, I guess I get so consumed in my life that I forget to keep a record. Anyway, this is the last blog post for 2009, and is just a couple things that I forgot to post, but want to remember someday.

Ava has been meeting some milestones: Ava has been sitting since mid October, and is working on getting in and out of sit on her own. Right now she gets out by leaning over one leg like a stretch and waiting for her legs to sort of give in to nature and flip her over. It is painful to watch, but doesn't really bother her much. She gets into sit when one of us puts her there, for now. In the first week of December, she began to discover the power of her arms. She started by moving in circles, pivoting around her belly, then she started to pull just a bit, and now, moves anywhere she desires by powering along those cute chubby arms. She is just starting to involve her legs some, but is pretty mobile just with the army crawl. She also has been drooling buckets for months, but in November she started gnawing on everything, bottle nipples, toys, furniture, and she got pretty cranky. Everyday I checked her gums hoping that it would be the day that I could say the tooth was in... finally on December 30th, Jon felt a tiny little sharp object poking ever so slightly through her top left gum. FINALLY!

Wes is pretty content continuing to do what he does, ROLL. Wes likes to be curled up and rolling. He doesn't really do it to get anywhere, but more or less to be in some other position. He is starting to have some interest in toys, if they happen to fall into his hands anyway. We are working on sitting, but it is hard to sit when you prefer to be curled up like a ball. Wes' biggest accomplishments in the last few months have been in eating solids. He takes up to three 3.5oz containers of baby food per day mixed with cereal. He loves to eat solids and doesn't seem to have many preferences in terms of vegetables verses fruits.

From 2009, Best of

HAPPY NEW YEAR!

Happy Birthday Livi and Tay!

Alivya and Taylor were born at 2:30 and 2:27 on this day four years ago. Their birth was sudden, frightening and unexpectedly expected... They were tiny, sick, and their future was as unpredictable as chaos itself. I don't think back to their birth with excitement and joy, but I have immense pride when I think of their journey. As we celebrate their fourth year, I have echos of the cautious predictions that were placed for them. The chances of survival, the chances of mental handicap, the chances of physical handicaps... so many numbers but at the center of all of them were children who belonged to me. They were so beautiful to me, and every step they've achieved along the way has added to my pride, my joy for them. Today they become four, they're not toddlers anymore, my oldest children are preschoolers. You'll have to excuse this nostalgia I just can't remember when they grew up. It was like suddenly they were these tiny adults, and not pudgy cute babylike kids.

This year's toys of choice turns out to be trains and extension chords. They have a Thomas the Tank Engine cake, and are so excited about it being their birthday. They seem to understand that they are four and not three anymore. They are excited about presents, cake, and the joyous expectations of Christmas haven't yet worn off.

Auction

So you might be getting tired of my posts about this, but it is really important to me to do what I can to help this family who are selflessly choosing to bring another person into their family. I confess that I copied most of this post from another blogger friend of ours, but I just didn't have the time today to put together my own post... which probably would have looked a lot like this any way, and Cindy did it so well... I wasn't able to figure out the photos though, so you might just want to read it on her blog at the link above... Anyway, her is a little bit about Michelle and why this auction is so important. Please stop by Lily's blog to check out the auction too!



Here is their story (Michelle and Brian have 3 beautiful children; Karly, Braden, Ruby (who's twin died before birth and has Down syndrome) and a beautiful Angel daughter, Lydia.)

"New Adventures
Last week, this beautiful little girl started showing up across the Internet, on many DS blogs:

Lera

Little Lera was in danger of being institutionalized. Look at that beautiful little face - she deserves a home and a family. It wasn't her choice to be born in a country where she has no value in society.

I just couldn't look away; I worried about her day & night. She had about a week to find a family. I contacted Reece's Rainbow, and told them if they can't find her a family, let me know.

Brian & I had always talked about adopting SOMEDAY - but we had thought we'd adopt a younger girl - SOMEDAY.

A couple days ago, word went around that a family had committed to Lera. I was so relieved - and a little sad that she wouldn't join our family. Then, I was THRILLED to find out Lera will be going home to my friend Tracy's home! Lera's journey will be followed on her new adoption blog!
This experience definitely triggered some interesting conversations between Brian & I ...

We have a house set up for a family of 6. We were prepared to have 4 children, and losing Lydia leaves a permanent empty space in our home.

We know we can never replace Lydia. Her loss will always be with us.

And we're very certain we don't want to have another baby; going through a pregnancy would just be too stressful. Too many reminders of what could go wrong.

And yet, we're missing a daughter, and what would be the best way to honor her memory? By keeping an empty chair at the dinner table, or by bringing home a child who doesn't have a family?

After all the discussions we'd had about little Lera, it suddenly became clear to us that were we to adopt, we'd want an older child - someone between Ruby & Braden in age, a little girl who would otherwise be destined to being sent to an institution and left there with no future. This would keep Ruby our baby, and another little sister for Karly & Braden.

We figured we'd start planning & saving up - and adopt when the time was right.

I told Brian to check out the at-risk girls on the Reece's Rainbow website. There were a few that stood out to us, but one who repeatedly drew our attention.
.
For one thing, she is a twin. She was given up at birth for having Down syndrome, but her twin was taken home. We lost a twin - and this little girl is a twin without a family. We lost Lydia, and found a little girl named Lilya.

Most children are sent from their orphanages to the institution at the age of 5 - Lilya turned 5 in August. It's amazing that she's still available for adoption.

So, we can't sit aside and wait and plan. We have to just jump in and go for it - and bring this little girl home. To our home, and make it her home.

Yes, it's expensive - but what is a life worth? It won't be easy, but the best things rarely are.

This is Lilya - soon to be Lily.


Our daughter Lily. "

So, with all that said, the Zoromski's are having an Auction to help raise money to bring Lily home, Please if you are looking for Christmas gifts, please go and check it out. Every penny will help.

* Auction ~
Our auction to help raise funds for Lily's adoption started today on Lily's blog. It will run until next Tuesday, December 15. Please check it out - and if you could pass the word around, we'd really appreciate it!

We have so many really cool items - something for everyone!

http://ahomeforlily.blogspot.com/

A little goes a long way

I wrote an earlier post about our friends the Zoromskis who have decided to adopt a little girl into their family. Her button is located on the right side of our blog... They are doing some fundraising to help pay for some of the costs of giving this child a place to call home. So if you are able, please donate, every dollar counts. And if you are not at this time, do us a favor and link to her fundraiser page, maybe someone you know can.

Thnaks!

Prematurity Awareness Day

Oh what a busy day I have. But I have a couple of minutes between appointments to remind everyone that today is Prematurity awareness day in November (Prematurity awareness month). I usually try to post something prematurity related every day in November, but this year I am simply too busy. So please think about all the babies that you know, especially those like Taylor, Alivya, Westli, Ava, and our nephew Zachary who were all born before they should have been. Premies struggles don't end when they come home, some of them last a life time. If you can, please give to the March of Dimes to help find a cure and give EVERY baby a healthy start!!!

And if you can't, then just tell five people about the harmful effects of prematurity and ask them to tell five people.

Thanks,

J and J

Oh yeah, and Happy birthday old lady! (my sister!)

Halloween

For Halloween this year we decided to work with what we already had at home. So, Livi went as a ballerina princess and Taylor went dressed as Steve from Blue's Clue's. Livi's crown didn't fit her little head so her auntie Amy put her hair up in the most adorable little piggys!

From J&J Online

The weather also didn't cooperate too well, so door to door she looked more like this:

From J&J Online

And Taylor like this:

From J&J Online

But for Taylor it was all about the Handy Dandy Notebook... he even gave up on Blue after the second house...

From J&J Online

Unfortunately the pumpkins never made it out of the patch... They had runny noses already and we thought the cold spell would probably make them rot or something ;) But they were super cute just like Livi and Tay when they were that size...

From J&J Online

Lily

Grab This Button



Our friends over at the Zoromski Chronicles have decided to adopt into their family a little girl in need of a good home. Please support this effort in anyway you can!

Good reasons to support MOD

More than 1M preemies die in the first month annually

March of Dimes: Nearly 10 percent of world's births are premature
More than 85 percent of premature births are in developing parts of Africa, Asia
But North America has world's second-highest premature birth rate
Doctors have yet to identify a reliable remedy to prevent early labor, group says

Taylor and Livi

thing (1 of 10), originally uploaded by J & J Studios.

Tay and Livi are growing up so fast. Over the summer we've been working on giving them some "chores" and responsibilities around the house. They quickly mastered the art of getting dressed, brushing their teeth, and taking their "medicine" (vitamins) with the help of sticker rewards. Cleaning up toys has been a slower process, but bringing their own dishes to the kitchen after meals was easy. They are super careful and so proud of themselves for doing it. Potty training continues to be a big goal in this house, but has been another slow going process. Yesterday we started the "naked" method. They quickly tired of our living room, one of the few places in our house that is not covered in nasty carpet, and both wanted their pants on. They started the day pretty well by sitting on their potties while movies played on the TV. Then they each had a couple of accidents, and suddenly Livi just got it. She started asking to use the potty when her "tummy hurt", then started sitting on it whenever she felt like she needed to go. She went in the potty three or four times without being asked or told to. Really thought some progress had been made. Today she didn't go for hours, we kept asking her to sit on the potty just to try. Eventually she went, so we thought we would try pull ups... did not go so well. Three pull ups in two hours later, she didn't seem to understand that she still needed to use the potty. So, we'll try again tomorrow. Sigh, I hate potty training!

May her work continue without her...

Description of Eunice Kennedy Shriver,88, passed away today

"Her love for the athletes of Special Olympics was always just like that. She never hoped that people with intellectual disabilities should be somehow changed into something they were not. Rather, she fought throughout her life to ensure that they would be allowed to reach their full potential so that we might in turn be changed by them, forced to recognize our own false assumptions and their inherent gifts." ~The Boston Globe

Where did July go?

I personally don't remember July ever happening, do you? All the kids had check ups in July, all were good with nothing special to report. Livi finally got some new glasses, and I am proud to say that they are still in one piece. Knock on wood. Westli's colic is starting to decrease, so much that he has some days where the crying is very minimal. Those are my favorite days. He continues to battle severe reflux and seems to have seasonal allergies. His eyes are puffy and red most of the time, he constantly rubs at them too. Yesterday we broke down and gave him some Benadryl because he was so nasally congested and miserable. He slept so well after that and has been in a pretty good mood since. Can you say relief? Wes loves to "talk" and roll. He rolls and rolls and sort of slithers around the floor. His mobility is pretty effective for a kid who should be functioning around 4 months. Ava can roll, but chooses to remain fairly stationary for now. She is growing like a weed. She likes to reach and bat at toys and lifts her butt up in the bouncy chair to make it bounce. I don't remember A and T doing that at all. It super cute. Ava is drooling up a storm, every outfit is soaked by the end of the day. She also loves to chew on everything, but generally prefers blankets and burp cloths. I think we are going to see teeth real soon from her. Ava is incredibly flirtatious and giggles and smiles constantly. I love this about her personality. Wes is just starting to smile more socially. He has short periods during each day where you are guaranteed a great Wes smile. He giggles a little, but not like Ava yet. We have started transitioning Wes to a "regular" bottle, he is doing well, but it is slow going. We also started solids. Right now, of course, we are just getting them used to a spoon going in their mouths and the gritty texture of cereal. I think Ava will begin actually consuming solids this month. Wes will probably need more time though. Ava started opening her mouth for it today, but still pushes most of it out with her curled up tongue!

Livi and Taylor are at the library with Jon right now. We started a reward chart for them when they do things to "help out". They get stickers for brushing their teeth, taking their vitamins, getting themselves dressed/undressed, picking up toys, bringing their dishes to the sink after meals, and, of course, sitting on the potty. A battle that we have been loosing thus far. For the most part these charts remind us that we have to help them do these things everyday. I think it has made us better parents already. We have also decided to pickup our tattered battle flag and raise it for the cause... POTTY, HERE WE COME. I am very determined this time, I really think with persistence we will get there, at least with one of them. Wish us luck, I need all the encouragement I can get!

Back, Back, Back to School

So I decided to try to finsih what I started back in 2004, and since June 4th I have been busy completing the first requirement, my Certificate for Nursing Assistant. Today I completed the classroom/clinical portion of the class, now I have to complete a state certification exam before I technically become certified. I have to send in an application for this and wait for them to assign me a date and time. Isn’t that how it works, hurry up… wait… Anyway, I haven’t been in school since Taylor and Livi arrived, so I had some minor anxiety about tests and stuff, but I finished the course with a 97%, so I guess that isn’t too shabby J It was annoying to shuffle around work, school, family etc, but during the time the course ran, I travelled to Missouri for four days and had an extended forth, and managed to get all my course work done without a problem. So for me, it definitely was managable. I am sure things would be different if Jon had also been working. For now, I am going to take advantage of the time that he is home.

I am taking an entrance exam (called the Accuplacer) on Monday. I have to prove that even after five years I can still do college level math and write appropriate sentances… I am not too concerned about this, but it is one more thing. Hopefully I will be able to begin taking some core level classes in the spring, if not this fall. Timing on this has not been great, but maybe waiting a semister will help us figure out where Jon will be sitting. Flexablity is something that technical schools all tout, but in reference to medical programming, it seems to me that demand has trumpted this. Therefore, I am not sure if our family sittuation is going to make things easy in terms of school, but we shall see. For now though, I sit in limbo, waiting to see what I can accomplish with what I have.

So for now,

“Schools OUT for Summer”

I am two hours into a 12 hour shift that is dragging, you will have to forgive my sense of humor…

For those of you not on Facebook

He rolls


He smiles


She is cute


On the boat with their aunt Sonja


On the beach with uncle Greg


He just wants some love


Hanging with Casey in Columbia


Playing in Greg's back yard


Looking cool at the lake




Not so sure about those water fountains

I just can't be Happy

This will have to be a quick update since Ava, just can't be happy right now. The babies had their 6 month pediatric check up on Tuesday and an Opthalmology appointment yesterday. Everything is going well. Ava weighed 14lbs even and has been super cranky all the time recently. I think she just "doesn't" get "enough" attention. This of course is according to her. I think she gets plenty. Anyway, Wes was 10lbs 12oz. The doctor thinks that he is suffering from environmental allergies. He has puffy red eyes most of the time, rapid breathing, congestion and sometimes pussy eyes. He doesn't want to treat with anything right now, but that could be in his future. The eye doc said they both look good right now, NO GLASSES. She will see them again in the spring, but wants us to watch the "allergy" symptoms with Wes. So all good news there.


Well, best go see if Ava wants to eat or if she just wants something to giggle at.

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.

Nostalgia

Our friends have a relative who gave birth to b/g twins at 25ish weeks this winter. This morning I received a weekly update from their blog, and they finally got to bring home their little girl. Having been through that twice myself, I know exactly what they are feeling and experiencing, not only with bringing home their first preemie baby, but also leaving one behind. I was leaving them a comment of support when I realized that I couldn't remember some of the tiny details about Taylor and Livi. So I flipped back to our blog archives during that time. It amazed me to read what I had written and bring myself back. I surprised to see some similarities in our life now and some of the dramatic differences.

This post for example, just blew me away. I scrolled through these photos and realized just how much Ava does look like Livi at times. And Wes like Taylor...

One post from July I recorded Livi's weight, clothing size and average food intake... I was surprised to realize that Ava is there already, but Livi would have been 7months old then, and Ava is only 5... Truly amazing what 3 more weeks in utero has done.

Here they are

Everyone happy except Ava, 3 out of 4 is as good as you are going to get with this group.

Photo Dump 5-18-2009

Col-ic - Damn you

Ava- 11lbs 8oz Wes- 8lbs 10oz

Wes has two settings: Crying or Sleeping
He has a very weak but shrill screechy cry that pierces your ear drums like an unexpected needle. Not unlike the sound of finger nails along a chalkboard. Sounds reminiscent of days long ago when Taylor was slightly older than him... although I still think Taylor was "better" at it. Since the crying, if you can really call it that, goes on before, after and sometimes during feedings and diaper changes, we can only conclude that this falls in the category of "colic". Like Taylor, though, he has an amazing ability to "turn it off" when people (a category that we are not included in) are around. IE all of his therapists (all of whom were part of Taylor's care team not so long ago) We are very happy that they are able to help with Wes, but hopeful that they will not be needed quite as long... Anyway, back when Taylor was colic, I read "The Happiest Baby on the Block" cover to cover in like a day, and while I think Dr. Karp was on to something, there are limitations to what the 5 S's can actually accomplish. It is his opinion that once you have actually shshed, swayed, swaddled, sucked, and sided the kid to sleep, that you can lay him/her down on their backs and they are "the happiest baby on the block"... I would add [for the next 5 minutes]...

I find the "5 S's" to be a fabulous tool for calming Wes, as I did for Tay, but after that he is either going drift off to sleep, or wind up again. The act of carrying out this theory has no bearing on which outcome we'll actually see. Wes has had a couple of hours of break through "happiness" in the past week. Brief periods of alertness that are not accompanied by the a for mentioned shrieks of terror. Like I said, they are brief. During those moments though, he actually has relaxed his face from the worry that is burned into it and looks around inquisatively... just as I remember Taylor doing. I am not certain if these things are related to prematurity, and if so, why the girls don't seem to have the same issues, or if they are boy things, or if its just my boys. I don't remember this period of Taylor's infancy so fondly, and they way its shaping up, I will feel the same about Wes... I hate that. I hate that I pick up Ava and think about how beautiful and bright she always is (even when she is spewing volumes of minutely digested formula...which she does daily, but is hardly phased by it...) When I pick up Wes, I worry about him and the worried look he carries in his eyes all the time. I can't wait for it to go away, so I can really enjoy both of my beautiful babies...

Sonja & Ava

Sonja & Ava, originally uploaded by J & J Studios.

This one needs no comment!

Greg & Sonja & Wes

Greg & Sonja & Wes, originally uploaded by J & J Studios.

Greg and Sonja trying to change Wes, such troopers!

Greg & Sonja & Ava

Greg & Sonja & Ava, originally uploaded by J & J Studios.

This was a really long time ago, ok like a month or so, anyway. All the kids enjoyed a visit from their favorite auntie and uncle from Missouri!

Ava

Ava, originally uploaded by J & J Studios.

Ava bean! She doesn't fit in that outfit anymore.

Bambinos

I try not to do this but, this is copied directly from my facebook note, sorry for the redundancy...

The babies had their four month check up yesterday. Ava weighs in at 10lbs 12oz and Wes at 8lbs 4oz. Both had really good exams with little to discuss. Ava has a number of "pin point sized hemangiomas" but since they are so small we're not supposed to worry about them. Wes had an ultrasound of his hips a few weeks ago (because he was breech) and it showed that he has borderline hip dysplasia on his left side. Since this could lead to bigger issues later on, Dr. decided to refer him to an orthopod to get their perspective on whether or not to splint him at this time. Other than that, they both got their four month vaccinations. They were such good troopers though... they cried until I got them settled in their car seats, then they sucked on their nuks and went right to sleep within minutes of the shots. I am so proud!

We will go back in 2 months for their 6 month check up... when did my babies get so big?

A Toast

To finishing what I started....

and my 400th post...

Hmm, would have though I would have more to say :(

Still looking for work
and sanity
and security

Whatever...

Behind the times

I was so proud of myself for blogging so much in the first few months of the year... but obviously I couldn't keep that up. The babies are doing well, gaining weight and growing. Ava just started wearing 0-3 month outfits as she has grown out of her newborns. Wes is smaller, and not eating as much, so I think he will wear his for a bit yet. I have started packing up his preemies though... Ava has been out of those for weeks...

Taylor and Livi just completed their first swim class. I am proud to say that Taylor actually got in the water for part of three sessions! We'll call this progress and be happy with it. The Easter bunny wasn't a big deal this year, but I think it will be next year, as I do believe they will remember it from this year. Despite Livi telling me that she didn't want her Easter basket, she is quite possessive of her candies and books. So I guess she did want it after all.

As for me, I am working every opportunity I have. Losing 3/4s of our income is terrifying, and the job market has been less than promising. We've closed our business, as we were the sole investors. Still unemployment is being a pain. To say that I am depressed is an understatement. I am just working on breathing all day, every day. So here in lies the reason for not really posting. I don't think most of you need to feel my doom and gloom as well.

W & A

W & A, originally uploaded by J & J Studios.

Still here... just super busy...

This for everyone who wants to know if they look alike... we don't think so, but that is us... judge for yourselves.

Still looking for a job... still adjusting to 5 hours of sleep... still eating every 3 hours (well Wes and Ava, not us)...

And we'll all float on ok...

First I would like to thank everyone for their encouraging words again. Seems like we need that a lot these days.

There is good news on the job front. I have several strong leads for positions all over Wisconsin and a couple out of state. I have really had to expand the job search net this time as the pickings are pretty slim. It does seem like the housing market is getting better, so that is good news if we do have to sell our house.

On the lighter side of things I decided to sell some games and my DS and pick up a complete Rock Band 2 setup for our Wii. Then, last weekend my mother flew in my brother and sister-in-law and we got down to rocking. Never thought I would see my own mother dawning a fake, plastic guitar, but she did. Even got the wife to play drums for a song. Had a great time. I continue to spend a good amount of time with the game. Not to much is better at the end of a weary day of networking, job hunting, and raising twins x 2 than rocking out to some Modest Mouse or Sound Garden.

Finally, what a lot of you come here for I know, new pics of the kids.

Perspective

Last week was a really bad week for me emotionally. I wasn't handling the idea that Westli's progress was non-existent very well. Every time I went to visit him I just sat there and cried. So ridiculous considering that he wasn't dying, he just wasn't eating. A big part of it was knowing that my medical leave at work was disappearing rapidly. Jon decided to take his paternity leave when both babies came home, so if Wes didn't come home two weeks before I went back, I knew that I would loose that time with Jon as well. I couldn't stand the idea of this last tiny detail of my pregnancy being wipped away from under my feet, just like so many other parts of it... you know, healthy babies, breastfeeding, taking them with me when I left the hospital... all that normal stuff that I started thinking about when we passed up the 26 week mark... Anyway, I cried and cried and got really angry, and then we decided to try him on thickener. And, he did well, and came home. I was excited for all of this despite our illness, which was thankfully very quick, and the fact that I would only get 10 days at home with Jon... better than none.

THEN... just six hours into his paternity leave... he got a call. Yesterday ThyssenKrupp (Waupaca Foundry) announced (to the public and its employees) a 12% lay off. Being one of the newest employees in his department, it is not surprising that Jon was one of the victims. Suddenly... perspective

I hate that term, mostly because I have been getting a lot of it recently. Last week all I wanted was time with my husband and my family, now, all I want is to know where we will be next month. I want to know how my bills will be paid, how Ava and Wes will get the follow up care they will require, how the he** do we get ahead when every two years we're getting laid off? Is there such a thing as security, and how do we get some? I have a lot of questions, fear, anger, hurt, and disbelief.

Vomitorium returns

Last year about this time we all came down with the nastiest stomach flu bug that I can remember. This year we got another... thankfully though, this bug was at least quick. Taylor started the fun on Friday morning when he suddenly started vomiting mid swallow of his juice. It was truly remarkable how quickly the bug attacked. He was wandering around fine, then like a snap of your fingers... vomit... Anyway, by that evening he was already feeling better and demanding food. We insisted on moving slow, but he ate toast and crackers really well. We kept him home from our weekly swim lessons on Saturday, and assumed it was gone.

Au Contre, Sunday morning Jon opened the kids door to find a mound on Livi's bed. She was warm and clearly running a fever. So after a soothing bath and some Tylenol, she vegged out on the couch most of the day. She also wanted to eat right away. By late Sunday night she was pretty much herself again. Thank god it was over and relatively painless...

NOT SO... I woke up at about 1am... and the rest speaks for itself. By 7am the nauseousness and vomiting subsided. I was able to eat toast around noon and things got better from there. Jon started feeling really sick around 5pm Monday. I think he managed to escape the vomiting though, so he may have gotten the mildest version of the bug. Ava, thankfully, has had no sign of any illness... knock on wood...

Jon spend most of yesterday sanitizing the whole house, I love Clorox wipes! I have been washing sheets and dishes and going over the hard surfaces again... oh to have preemies in the house again! Westli will arrive to a very sterile home!

Some pics from the calm before the storm...

Breaking out on Tuseday

20090315154330, originally uploaded by J & J Studios.

Westli...

Photo Collage

Some of you have been asking for a photo of all the kids at the same gestational age... so I finally got around to figuring that all out... Sorry it took so long!



Taylor and Alivya would have been just over 3lbs in this photo... Ava and Wes would be just over 5...

I still want a drobo.

For those of you following the blog for a while know, I want a Drobo. So here is another link to get me a chance to win one. The blog itself is nice, all about how to back up your data, which is very important for those of us with valuable files such as photographs. Anyways, here is the link.

mydl.me

Two Months

Today Ava and Wes are two months old. Ava is home, and doing very well... she snuggles and sleeps most of the time, but cries when she is hungry like babies should. Ava is eating close to three ounces per feed, and wakes up 1-2 times per night. She seems to be enjoying all her cuddle time. Her older siblings are getting along well with all the changes in our home. They seem to understand that Ava's needs come first, and have a lot of curiosity about her. There has been a little pushing of buttons and reverting back to more baby like tendancies, but nothing that we haven't been able to handle so far.

Wes... Wes is still in the hospital. He doesn't seem to have enough endurance to feed orally for all of his feeds. The doctor has been changing his orders to try to deal with this, but so far he continues to eat only about half of his feeds per day. The doctor says he is "sensitive" and isn't giving us any real idea of what to expect. We are tired, and annoyed, frustrated and just sad that our time is slipping way... ok well my time is slipping away. I go back to work on March 27th, every day is another day I lose. The hospital depresses me and even though I want to see Wes and spend time holding him, I can't stay there long these days. So, again, we wait...

Ava

20090301152232, originally uploaded by J & J Studios.

Jon caught this smile while we were "rooming in" with Wes and Ava on Sunday March 1st. I know its blurry, but so darn cute...

Taylor

20090303084329, originally uploaded by J & J Studios.

This is Taylor's newest obsession... this yellow and navy diaper bag... he wears it like a back pack, but sticks his cords (old computer cords that don't fit into anything anymore) in it. Looks like a mailman... or a portable vacuum... He is very creative.

Livi

20090303084324, originally uploaded by J & J Studios.

Livi being sassy... look out!

Westli

20090301152604, originally uploaded by J & J Studios.

Westli during our "rooming in" at the hospital Sunday March 1st.