Thursday, October 28, 2010

Heart surgery in the future...

...the near future that is. Calvin saw Dr. Sutton yesterday. He had an ECG and laid pretty well for the poor man who needed a ton of pictures. He was getting wiggly towards the end but we both agreed that wiggly and content was better than wiggly and upset! Dr. Sutton and I met afterwards and he surprised me by saying we should do surgery in November or December. Calvin is 3 months and they like to do it between 4 and 6 months and there is nothing to gain by waiting any longer (according to the doctor). Calvin's VSD (ventricular septal defect) is 12mm, or about a half an inch. Wow! That is big and Dr. Sutton said so too, but that does not cause extra alarm to him.

Some good news is, his aorta is not narrowed, which can be an issue, and his mitral valve, which is between the left ventricle and left atrium (top and bottom on left side) is working well and will just need a couple of stitches. The VSD, ASD (atrial septal defect) and mitral valve = Complete AV Canal defect (CAVC). Those 3 are the common issues (something new to me yesterday). The VSD will be patched with Dacron (spelling?) and the ASD with tissue that lines Calvin's heart. Any questions students? I hope not, because I am still learning, too. Well hey, I guess I will find out how the ticker works after all. It is nothing short of a miracle that he can have his fixed!

Dr. Sutton will have him in on next Thursday's conference with the other cardiologists and surgeons, and then he will call me. From there we will schedule the date. More news is to come.

Wednesday, October 27, 2010

It is tough being a woman, right Esther?

When I was home on maternity leave with Nolan, I embarked on 2 great bible studies by Beth Moore. Esther; It's Tough Being a Woman was my favorite. The other was Beloved Disciple (John). Esther... was the easiest to relate to and read. During that study, one of the most profound messages for me was is regards to fear. Esther overcame many fears in her life (READ THIS BOOK! It is easier than you might think!).

She a)had a choice: "She [Esther] had to overcome herself in order to do what God had created her and positioned her to do" b)faced the fear and c)took the courage. The most repeated message throughout the bible is do not be afraid, fear not. If we truly believe in God and His Son Jesus, we have no reason to fear. However, at times I do. The greatest debilitation in my life is fear. This fear can consume me and lead me to do things I do not want to do. It can stop me from pursuing something that means a great deal to me. It can cause doubt, disbelief, anger, pain, etc.

This all came flooding back to me as I decided to try nursing Calvin again today. I have not tried in a month. And, I must say, if you never nursed, did not like nursing, or did not nurse for the long haul (which would mean you never nursed, could not nurse, or did not like it), I completely understand that this whole desire may be extremely difficult to understand and may bore you to death! However, I nursed Evan and Nolan for a bit over a year and I was so sad to quit I would actually cry. Sooooo, I have spent a great deal of time in sorrow over not nursing Calvin.

Anyways, today was a turn around not only for him, but mainly for me. I tried and it was the best session yet. No, he did not eat (I had just pumped and gave him a bottle) but he kept at it and fell asleep after 4 minutes and he stayed right there. I was so afraid of failure that I have actually been thinking I'd just give up. Fear was rearing it's ugly head. Well, guess what Fear, I will Not! My friend Esther has taught me a few things and we won this afternoon. If she was willing to stand up to death, I can surely stand up to failure.

Tuesday, October 26, 2010

Adoption

I have never wanted to adopt a child. Some people walk around high school saying they will adopt someday. I was never one of those people. I was never one who wanted to sign up for having a child with Down syndrome, either. It intimidates me, it all does. So many "what ifs" and "is this enough?". Calvin has brought me more awareness in a world that I never knew existed. I did not want to know it existed. It is like the information on food in that book. I do not want to know what is in the chicken I ate yesterday. That is just plain naive and it is for Jesus that we need to open our hearts, minds, eyes, and ears. We need to do for Him as He does for us. We need to love one another and not judge. I could never be that way, but I want to try.

Can you imagine this? I couldn't, but it does exist and it is beyond sad. Oh how Jesus' heart must ache. I do not know what to do. For now I am sharing that.

Bookworm

I read more of that book I mentioned in the previous post (Skinny B**ch) and I have to say I would not recommend buying it! NOT, I said. I can tell you, I agree with about .5 the message. Sure, there is science in there and I give the authors credit for that. I do think it could have been said in a less rude manner. It is funny at times but that got old. The message is, do not smoke or drink alcohol, coffee or pop/soda (diet either), drink water, eat fruits and veggies, and some more that is really extreme (another reason I would NOT recommend). The authors claim we are not meant to eat meat because we cannot physically hunt without tools and we do not have teeth that resemble a tiger's. However, we do have both plant and meat eating teeth and we use our brains as tools (though they argue this with the fact that our brains also make cigarets and alcohol, etc). Sure, that is true, but that is our tool, correct? Well, I made it through to the part where not only do we have to give up all dairy and meat (eggs, too), but we should substitute with tofu. That is questionable. I am weary of soy products that affect estrogen levels. Anyways, that is the update there. Since I brought it up, I did not want to leave it open ended like that. I agree, there are lots of nasty chemicals in dairy and meats, but we can purchase organic, free range produce (though I do not claim to always do so, I'd like to, but don't). I agree, not everyone should eat dairy products. As I mentioned, I am questioning that in Nolan's case because he still has very runny diapers. I won't go in to details on that one. I'd rather dairy not be an issue, it is pretty difficult to eliminate. He did not have any yesterday though.

Karen Hurd, the nutritionist I have been working with occasionally, also mentioned my eliminating dairy for Calvin's sake. Dairy is known to contribute to reflux and could be contributing to Cal's aspiration issues. *sigh* I have set new goals in the eating department with him. Remember how badly I wanted to nurse? Well, I still do. But, I want him on thin liquids and taking a bottle really well, first. That is just realistic. Reality is not easy to take sometimes. However, when I accept things I feel my character growing. At least I hope it's growing, not hardening. Know what I mean? Sometimes I force myself to look in the mirror and ask if I am the same person I was 12 months ago? Of course I am not, but do I still seem myself? I think I am more easy going in some ways, but I do not want to rid myself of some innocence. Gosh, I could write a book here. But I won't, because it's 3:15am and I'm about done pumping and want to get 3 more hrs of sleep before waking my sweet 4 year old (wow, I thought he was old until I typed FOUR, that is not old at all) for breakfast. He already knows he wants and apple and cereal. What a kid. I love him to pieces, all of them.

Sunday, October 24, 2010

Week 13, Turning 3 months!

There is a familiar feel as I bounce Calvin on the exercise ball, something I did for hours upon hours with Evan and Nolan. Calvin is getting bigger! I weighed him on Friday and he was 9lbs 10.5oz, which was a half a pound more than a week and half earlier!

Calvin is smiling more, though not as much as I'd like :( But, I'll be patient with him. He definitely likes to look around at toys and try batting at them. He is getting better at making contact with them. His hands are together and in his mouth more, too.

We visit the cardiologist on Wednesday morning. I believe he will be having another ECG (echo cardiogram) and I have a feeling Dr. Sutton will suggest waiting until after the new year since his weight is going up nicely. I have mixed feelings about that.

Calvin now eats 6-7 times a day, usually about 21-22 ounces a day. His food is still slightly thickened by guar gum. I use about 1/8tsp per 3 ounces and let that thicken for roughly 15 minutes. Calvin is doing okay with that. I am still nervous about aspiration though. We'll work that out as we get there. That is all that is new with that little man.
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We carved pumpkins for the first time (yeah, we grow them but never carve them). We took some of Joe's large ones to Grandma Linda's and carved over there. Nolan did not care much, but Evan enjoyed it. He wanted to carve his how Joe and I carved ours. Nolan was more into his baby doll. It is a good thing he has those dolls to carry around. It is my hope that he will use them to experiment on instead of Calvin.

We are having lots of fun with the boys and I wish I could remember more of the cute things they say so I could post them on the "Out of the mouth of babes" page, but I always forget. It's my "mommy brain".

We are nursing colds around here. I thought I was going to get away without it since it has been about a week and a half since Nolan came down with it, but no such luck. I started getting a runny nose and sore throat Saturday night :( I do not like being sick, especially when sleep is disturbed. I have to say though, I am double dosing the vitamin C and I am about 80% healthy again.

Speaking of healthy, I am working hard to improve this area of our household, starting with focusing on eliminating dairy from Nolan's diet. There are a few things going on that make me suspect a sensitivity to it and it will be very hard to address but I want to give it a week and see how those symptoms are at that time. Diet is the most important and controllable aspect of our health, yet one of the most difficult. We'll see how this goes. (I started reading Skinny B**ch, by Rory Freedman and Kim Barnouin. It has extremely racy language, but the message is blunt and in my opinion, pretty useful - the trick is to get past the language. It is kind of funny, too).

I'm signing off and going to join the boys in watching Charlie Brown Thanksgiving. Evan giggles when he watches Snoopy!
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Picture this in 18 years. I know, Evan will have his license before then but I'm not sure I ever want him to drive;)

Nolan and his doll.

Incase you doubted Nolan's boyhood, he is a match for his older brother. And, I know, I should be better and not let them wrestle on the couch.

Calvin was crabby for his monthly photo shoot and would not look at the camera.

Pumpkin carving time!

Nolan and Calvin were occupied with other "people".

"Ooo, aah".

Evan came to me while I was holding Calvin. He pointed at Calvin and said, "That guy is the sweetest." Nothing but love. I guarantee you Evan sees no difference.



Friday, October 22, 2010

Is this enough?

A quick thought, or question maybe:
Am I being ignorant here? I feel like 95% of the people who have come into my life accept Calvin and yet I read so much about people with Ds not being accepted into mainstream life (in other countries) or struggling with people reacting negatively to their child with Ds. I guess I am super fortunate and blessed to be surrounded by so many supportive and loving people, or am I wrong and more people are unaccepting (is that a word)? So many bloggers promote awareness much more than I do. I do not do this (blog that is) to do that in a direct manner, but rather to just show how life is pretty normal around here. Is that promoting awareness in a way? If you were to have a child with Ds now, would it seem less scary or sad? If so, then I am promoting awareness. Will you look at someone with Ds with more respect? If so, then I am promoting awareness. I am becoming aware through having Calvin: I am less scared and sad and have more respect for people with disabilities. Okay, I'm tired, but I just wonder if I'm naive and it will hit me. Sure, some people (thinking mainly of one of the nurses in the NICU) were pretty rude, but not anyone that matters to me! :) Thanks for that and hugs to you.

By the way Carri, I just remembered I was supposed to say "bye" to you, 3 weeks ago, oops. "Bye".

Wednesday, October 20, 2010

In all honesty, bring out awareness

This post is hard to start. I have some anxiety over it. But, since it is Down syndrome awareness month, and out of respect for Calvin, I feel like I should address some serious things about our journey thus far. Please remember, this is strictly me speaking and does not reflect anyone else.

If you've had a chance to visit the online Down syndrome group I mention periodically, you'll know it is a place to post comments or questions and ask others to reply, or reply to other's posts. One mom recently asked a question about how honest we (mothers to children with Ds) were about our feelings. I guess I'd say I was about 50% honest with most people. I'd like to share a bit more about that and where I am at today.

The night Joe and I found out Calvin has Ds, I could not even finish the phone call with the genetic counselor. I was crying too hard and handed Joe the phone. I felt like a jerk with how I treated her but I'm sure she understood why I could not even say 'good-bye'. I was mad at her. She said it like it was no big deal. She had a sweet voice. I felt sick to my stomach. Joe, who was diagnosed with Lyme disease a year ago, was going to a support group in Amery to deliver some information on a new test his company is running (he took my blood last night to use me as a test subject and I sure hope it comes back negative, which I think it will). I encouraged him to go. He was mad. I was angry with him because I wanted him to be positive - he was all week as we waited for the results. I did not want that around me as well. It was too much for me to handle.

I called my mom and she and Dad came over. I cried. I told her I felt like a failure. I did. I felt like I was better than that! We were better than that! Joe and I have cute, smart boys who are full of life, and we were going to add to that how? Joe's mom called, not knowing we had found out. She showed up in tears as well. But we sat there talking about things like "your boys are going to be better men because of this baby, and so will Joe". I was not really ready for any of this. I wanted someone to fix it. I felt like no one could understand since it wasn't their kid.

I cried myself to sleep and cried myself awake. It was one of those things where I woke up feeling yucky and it took a second to remember why. We've all had those moments. We want to believe it was a dream or it was resolved in some way while we slept.

I went to work. I couldn't stay home. I cried to our wonderful daycare provider. I told a co-worker that I hated my life. I had about 1% tolerance for the kids at school and their "petty" issues like "I thought we could eat lunch together today". I cried to my boss saying I felt so sad about wondering what the baby would have been like without Ds; like he was one way, and then this happened and changed him (though I understood it doesn't work that way).

Time went on. It was hard but got much easier, starting that day and night when my sister-in-law told me a bit about her husband's cousin who has Ds. She told me about how he sits around the campfire and drinks a beer with them. He stays home alone when his parents go to the cabin. He can make his own meals AND their other cousin absolutely loves him! I started feeling more optimistic, like I could live with this.

Fears kicked in. I wanted to think my baby was cute. I didn't want him to have glasses. I didn't want him to be short, or have slanted eyes. Basically, I didn't want him to look like he has Ds. Later that summer, a man at the grocery store told me "you have a beautiful family". I thought "I wonder if he'd think so if he knew this baby has Ds". I didn't know if I would think so, is the thing.

So far, I've been about 75% honest with you and I have contemplated ending there, but won't.

After finding at about Ds, I thought it wouldn't be so bad if he didn't make it due to his heart condition (it is taking all my mite not to delete that sentence).

I didn't feel pregnant. I didn't think I should buy anything for him or talk about pregnancy things (like how I felt or being tired or what he would be like). If I did, there was this voice asking "who are you kidding?" (that was the devil by the way). However, I wasn't about to jeopardize his health. I actually wanted to keep running to strengthen his heart which is why I know in my heart I did not mean what that "other" sentence implies.

Fast forward 6 months to today (yeah, 6 months already!!). I am loving how idiotic I was. How flat out ignorant and repulsive I was. I am sitting here, while the sweetest boy I've ever known is batting at toys and making noises to let me know how he feels about life. At times he's upset, like when he was waking up in his crib while I finished pumping or at other times when he's just content being here. It's like he knows this is where he belongs. I know it, too. Or, he wouldn't be here.

By the way, I do think Calvin is cute as can be and I could care less if he needs glasses. I could also care less if other people do not think my family is beautiful on the outside. I think they do though. It is that phenomenon I spoke of while his "aunt" Pat held him. People are drawn to Calvin. I hear so many comments about how adorable, sweet, and beautiful he is. "He's a doll. Look at those eyes. Etc, etc." People want to be around him, to hold him. He is someone I can only hope to learn from.

I am dreading heart surgery because I don't want to be away from Calvin for even a moment. He and I have so much to do together, I get butterflies thinking about it!

Monday, October 18, 2010

Again and again and again!

I have started and deleted quite a few posts because I have not had time to finish them. It has been very busy around here for about a month and it was catching up with me in a negative way. My mood was low, along with my energy and my milk supply. Sooooo, I slept in until 8 yesterday and took a day with my mom and sister, Katie. We shopped and laughed and ate. It was long overdue. I came home and the boys were still alive and well. Imagine that ;)

Our internet is also a pain. I'll start downloading pictures and the connection will drop so I have to start over, again and again. We have to do something about that, it drives me crazy! Unfortunately I do not know what to do about it. Joe has spent time trying to figure it out (a lot of time) and came up with the idea it is our MacBook. Anyone know anything about that??? So, that is another deterrent to these posts. It takes a lot of my time to keep re-doing the downloads, or uploads I suppose. Seriously, if anyone has any ideas for us, please help! We use wireless and have Frontier. Could it be our server box (if that is what it is called, I am not very technology savvy)?

Anyways, I hardwire the darn thing and it works but it's inconvenient. I know a lot about inconveniences and well, they are not that bad. Life goes on, and if we choose a positive attitude, it sails on, right? I thought so.

Remember this white tongue on Calvin? Well, I thought it was 'growing' whiter so I started once again to treat with the prescription, Nystatin. That would have been the 4th or 5th round of that junk. Yeah, my opinion, junk. Thrush is a yeast and yeast feeds off sugar. Nystatin has in it...sugar! So, the good Online Ds group (see link to right) mamma's introduced me to Gentian Violet. Found at your local drug store, Gentian Violet is a mess but it worked, and fast! 7 applications, 12 hours apart, and we have a tongue as pink as the day he was born. I also doubled up on Cal's probiotic and am washing hands often and boiling bottles and pacifiers. I also picked up grapefruit seed extract (GSE) to use because Gentian Violet is not to be overused! GSE has many great uses, check it out! I got it at a local health food store for about 8 dollars and it should be the only bottle I'll ever have to buy.

Speaking of supplements. Calvin also started NuTriVene-D and NuTriVene Longvida Curcumin. These supplements can be thought of as super antioxidants. Not much time to get in to that here, but maybe in the future. Anyways, baby's fussing, time to go. Have a great week!
(you can *barely* see the violet tongue in 4th picture)

Saturday, October 9, 2010

1810.5

That's the weight of your new world record pumpkin! How exciting for the St Croix Growers Association! I have loads and loads of pictures from the past week.

Congrats Joe on your new personal best, 1422.5 lbs.

1500, here you come!

I have a lot of respect for the hard work that goes in to growing these giants. So much time, patience, forgiveness (moving on after a plant or fruit that is lost), and back pain! I know, I've helped. Granted, it has not been much these past few years. It is hard to crawl around on your hands and knees with a baby in your belly!

I also have a lot of respect for the hard work that went in to the weigh-off and Joe did a great job emceeing it!

People have been curious about Joe and Chris: Joe went to school with Chris Stevens, the record grower. They ran together and met back up after college to continue running together. Joe was growing his giants and Chris caught the bug. They also spread it to another local man, John, whom I introduced a week ago. They are quite the gardening trio. It has been a lot of fun. Watch for Chris and his pumpkin in the national news.

I have a picture of Calvin on the 1810.5 from Friday night but it's on Chris' wifes camera so we'll have to be patient.


This is pre-weigh-off, but I'm pretty sure that if Calvin needs glasses, I could live with that knowing how cute Nolan is with his fake ones.
I warmed up the camera on Friday with Calvin and Evan:

Evan and Cousin Nevaeh.
Harvesting pumpkins is a family affair. Cousin Maddie came to play with Nevaeh and the boys.

1020 pounder, and I'm not sure what Joe's face is all about...
My pumpkin, weighing in at roughly 9 lbs, 3oz

Joe's Stillwater Harvest Fest fruit.
Joe, Grandpa Pete, and Grandpa Wayne
Nol, Naya, and Ev
Joe won the hard stem pumpkin category with this 64 pounder.
Chris' wife, AJ, carved Joe's second pumpkin he brought down. It was not officially entered in the contest, but weighed 1020 lbs!
Nolan loves animals. They probably don't always love him!
Sisters, no doubt!
A safe place for Nolan, and he could see so much more!
The kids were longing to get in the water.

The boys appreciated the gigantic watermelon. Not only were they large (1st place was 223 lbs), they were cool, giving Evan a nice place to relax in the heat.

Joe, Ev, and Chris waiting for Joe's pumpkin to approach the scale...a nerve wracking time.
Joe's pumpkin hit the scale, revealing his personal best. That .5 pound gave him 4th vs. 5th place.

Calvin did not want to miss out on a thing. He was awake the majority of the day, just like his brothers were as babies. ("More alike than different" - the Ds motto)

Nolan was ready for a nap.
Joe announcing and John behind him.
John's pumpkin, 1506 lbs!
Chris walking up with his pumpkin. The jugs of water help the fruit retain water weight. It was still growing when it was cut from the vine.
Funny Casey! You can see this on YouTube
The water was tempting in the unusually hot October afternoon.
Evan and Cousin Hollie's son, Carter.
The start of the Pumpkin Regatta.
Second pumpkin was powered by local newsman Erik Perkins - from "Perk At Play"


Ev and Carter gave their moms a break from begging to go in the water. They listened to Joe announce the awards instead, thankfully! It was a nice break for us!
Growers who accepted awards:
The regatta pumpkins remained afloat as we left for the evening. I guess the retrieval was not well planned.
AJ did an awesome job! The large one is in front of our driveway, thanks AJ!

The remaining growers from the event. Don't they look happy?
Ev in front of Chris' pumpkin.
The sun started settling in to the west and the crowd died down, allowing me to relax and enjoy the quiet and spend time with Evan (the other 2 left with Grandma and Grandpa Sykora shortly after Joe's pumpkin hit the scale). Evan kept busy husking corn. After that task was complete, we ventured out and he struck some overtired poses for me. (We ate dinner after we left and he was so tired he could hardly eat. He was asleep before we got home.)
Putting Chris' pumpkin back on his pallet to take home. I imagine it will take many trips this coming month.




I see Joe in Evan and Calvin when I look at this picture! That's the first time I've really seen it!