Beckwith Wiedemann Syndrome

Immediately after posting my last entry, I decided to google 'large tongue in infant.' I thought that it would just bring up how some babies do have them and grow out of them. Instead, it brought up a syndrome. An overgrowth syndrome. And he has most of the characteristics. And if you don't already know, cancer is due to overgrowths.

It's called Beckwith Wiedemann Syndrome. The babies characteristically have large tongues, hernias (he has), large birth weight and height (7lbs, 5oz and 20inches 4 full weeks early), low blood sugar after birth (don't know about this one), the strawberry mark/'stork bite' (he has on his forehead, eyelids, and back of neck), ear pits or grooves (he doesn't have at all.. Interestingly, Westen has an ear pit that he's had since birth but I never knew what it was-- until now), and enlargement of one side of the body (nothing I've noticed at all). I've read most babies don't have all.. most have two.. It's just different for everyone. It's also more of a childhood thing, with most babies growing into normal adults. It's not that anything is 'wrong'.. and they do tend to grow into their tongue, the strawberry marks go away, etc... BUT.. They have a much, much more significant risk for getting cancer. From what I've read, most are treatable cancers.

There's only about a 1 in 14,000 chance of having this. Most of the pictures are horrifying.. Aeson certainly doesn't have it to the degree some do, if he has it at all.

I called his doctor.. wondering why on earth nothing had been said when to me he clearly has the majority of the characteristics. Children who have it are to be continually monitored for tumors as well (every 3 months until age 8 or 10 is what I read I think-- after that, the risk is very minimal). She finally called me back today herself. She said that she had considered it, mainly because of his tongue but that she hadn't seen any of the other characteristics (besides now the hernia). She said that he wasn't abnormally large for 36 weeks, he didn't have low blood sugar (but then when I asked if that had been taken, she said they 'usually' did and sounded like she was then looking for it.. I'm not sure they did with all his complications), and she specifically looked for the other physical characteristics at the last appointment- not seeing any. She said she was going to wait until the next appointment to see how much he grew and things like that before saying anything. But.. since I beat her to it and we'll all be worried about it now, she said we would start the testing. There is no definitive test.. but we'll start with bloodwork and go into deeper genetics testing if needed. So, after work today, he'll be going for his first bloodwork.

My thoughts on this? First, of course, I'm scared to death. At first I was handling it pretty well.. only about 7% or so of children with this actually get cancer I read.. but man, he and we have had so many things happen where the chances were even smaller than that already. I'm not going to think too much about that part yet.. just take it one step at a time.. Something I am going to have to learn to deal with is the constant testing if it does come to that.. Not only because he'll have to endure different types of examination (blood, ultrasound, etc) on a regular basis but because the outcome could be different at any one of the times. Like I said on facebook, I'm pretty certain I can handle just about anything, though.

I'm now scared for future children.. It's not supposed to happen to subsequent children, but it worries me that Westen had one characteristic (I wonder now if he should be monitored too...) and then Aeson had several.. I worry that it will get worse with other children, and I just couldn't do that to them.

On the positive side, I see now why maybe it was a good thing my family was talking about it.. After all, it lead me to researching it and is resulting in this earlier testing. I'm also very thankful that I was so insistent on breastfeeding this time and so determined to continue it.. That's gotta help, right? When things like this happen, you see the reasons for things you never did before.

Please pray for him.

Sort of a tiny treasures post but a regular one in there as well!

The life of a nursing mom of two is the busiest life ever, I SWEAR! It is so hard to find the time to do anything. I'm in my third week back to work.. I get up earlier than I ever did before, in order to get ready, get everyone taken care of, nurse, and drop the kids off at daycare before going to work.. then I leave work mid-morning to go nurse Aeson.. back to work to eat lunch.. pump in the afternoon.. finally get off work to go pick the boys back up.. and then all Aeson wants to do in the evenings is nurse! I'm lucky to get enough time to make dinner (something Eric never does) and get things ready for the next day. It is absolute craziness. I haven't been able to clean house since I've been back to work and while Eric tries to help, it seems like I always have to nag at him.. and not enough gets done. And exercise? NO time for that! Aeson turned 12 weeks yesterday and my weight has been at a standstill for quite some time now. I have about 10lbs I have to lose to be at my pre-pregnancy weight, and I'd like to lose more. (I'd gained some just before getting pregnant) But I seriously cannot fit that into my day. I'm trying to just relax and have patience.. Right now, my main job IS giving that little baby all his nutrition.. I just have to wonder when it will ease up a little. I guess the big thing is that it just becomes very hard to have 'me' time when you have multiple kids! Because even if I do have time, I try to give Westen one-on-one since he rarely gets that anymore. I feel bad that he has kind of taken the back burner but again, I try to remind myself that this won't be forever.

On the positive side, oh how I love to feed my little Aeson. We kicked the shields (on his own!) and he is nursing perfectly now.. no problem! I love when he starts to fall asleep but when I talk to him, his eyes fly open. I love how he can nurse all night as he pleases now and I'm still able to get my sleep! I love how it's something that's beneficial for him AND for me.

Aeson is getting SO big. 3-6 month clothes are getting small on him already. We weighed him on Sunday at my in-law's, and we believe he's around 14lbs,14oz. We tried the cloth diapers for the first time over the weekend and love them!! I was pleased to realize that they really do work just as well as disposables.

We also went to a baby shower for my sister-in-law this weekend, and one of the aunts got after me in front of everyone! I was pretty embarassed. They were asking about Aeson's sleeping, and somehow I just had to say that he sleeps with us (even stating that I KNOW some people have strong opinions about it).. and I was told very strongly NOT to do that. She said she knew someone who rolled over on their baby and killed it (well, she said, they didn't know if it was the mom or dad). Okay, now hopefully, hopefully I will NEVER have to experience anything like that.. AND I could be wrong here.. but I've done my research and I KNOW myself. I sleep very lightly and even the slightest fussing wakes me up. I really believe I would never, ever roll on top of something and NOT know it. I actually don't even move in my sleep because I'm always right in the place where Aeson can eat as he wishes. I've never rolled on Westen when he was sleeping with us.. on cats when they've been in bed with us.. etc. From the books I've read, women have co-slept for centuries.. here and in other countries. I also take precautions like holding the blanket IN my hand and down around Aeson's waist, so there's no chance of it going over him. Not to mention it's not a heavy blanket and he FREAKS out when stuff is over his head (a battle every morning! :)). Anyway, it's nothing I would ever recommend for other people because they have to know themselves and be comfortable with whatever they do, but it works for us and I really (god forbid) think it will be fine. I didn't say all of this to her, though, not wanting to cause a scene. I hate it when people try to impose their beliefs onto you... especially in such a forceful manner.

Anyhow, Aeson is SO smiley these days. He's most happy in the mornings. I love love love to see his face break out into a big grin at the sound of my voice. Even today at daycare, he was crying when I got there (where's my mommy to feed me?!), and as soon as he heard my voice, he quieted. While he is still a fussier type child, he has definitely gotten better and has definite periods of wakefulness and contentedness. I don't know how but he also always seems to 'know' when there is something important that I want him to be quiet for! :) And he's perfect at those times. I still always stress beforehand, though. :)

Another thing that I haven't mentioned yet is that Aeson has a large tongue for a baby. It's not causing him any difficulty eating or anything like that, and the doctor said that some babies just have that and they always grow into them. :) However, my family will not stop talking about how something might be 'wrong' with him. It drives me CRAZY. Clearly, he was in the best hospital around here for TEN days after his birth.. a hospital where they gave other babies diagoses of Down's etc.. and no word about him. He's clearly met all his milestones so far and appears to be JUST like other babies.. just with a tongue that is often visible and he's often playing with. It even looks like he tries to move it like ours when we talk.. so funny! Now clearly, again, I have no way of knowing if there IS something we don't know about but I honestly don't believe there is.. and I just wish people would stop talking about it! Even if there was something, who cares??

Boy, I'm ranting today. :) Had lots to write about!

Westen's adoption was final on October 14. Eric and I went to court, and he is now legally his daddy. :)

Hope everyone has a good Halloween!

Tiny Treasures Tuesday: 10 weeks

Aeson
Well, this week Aeson slept 7 hours two of the nights! I, of course, didn't get that much sleep.. as I was waking constantly to check on him.. but it was still nice. :) The past two nights haven't been as good.. He's a little congested, so I'm not sure if that's part of the problem or if he was sensing that he wouldn't have me all to himself starting today. :) He also started falling asleep on his own this past week.. without crying or eating or anything!

Last week, we got him one vaccine. I did soooo much research on it. I was a mess! We finally decided to go with one vaccine at a time and to start with the one with the least side effects and the one that is most risky if you acquire what it's protecting against (HIB). He did really well, only crying for the few seconds the serum was being pushed into him. There are several vaccines I'm not going to do at all (MMR and any live vaccine-- such as the rotavirus), and I'm still undecided on the rest. The whole 2-4 month increase in SIDS risk scares the heck out of me, so I think I'm going to try to wait as long as possible. I've talked to several people who know others who were never vaccinated and perfectly fine too.

Westen
This was Westen's last week at home before starting back to daycare part-time. He's been helping make dinner when he can, and this weekend we made pumpkin sugar cookies. He LOVES doing stuff like that. This past weekend was also a skate party for his daycare. It was his first time skating! He really, really liked it, although he rarely let go of mine or Eric's hand. He's been saying since that he wants to go back. The skating place is still exactly like when I was younger. He had a blast skating and playing the arcade games they have there- particularly because his best friend Kaden was also there! Afterwards, he got to pick a prize and he chose a little plastic fish. He insisted on putting it in a bowl of water when we got to Grandma's afterwards (for pizza with the fam!). He'd wanted to put it in our big (real!) fish tank at home. :)

I think Westen was well aware the transition to school was occurring as well.. Last night, he continued to come in our room after bedtime saying 'I just love you Mommy' and 'I just love you Daddy.' He also told me earlier in the day, when we were discussing the return to work/school, that Aeson was going to miss me. :)

Westen also did the cutest thing this week.. Aeson was lying in his bouncy seat while I was getting ready and Westen decided to come in and read to him! I didn't even mention it.. he just did it! He's SUCH a good big brother. I got a couple pics I'll have to post next time.. I haven't had the time to upload them and get them on here!

Tiny Treasures Tuesday hosted by Lerin at mycatholicfamily.blogspot.com

Preparing for work

I go back to work on Tuesday. This morning, when I woke up, I thought.. "two more days.." Now it is just barely over one. :(

The latter part of this week and the weekend were spent preparing for it.. laundry done, everyone's clothes laid out for the week, groceries bought for lunches, and I've been reading Hirkani's Daughters in preparation for the scheduling. It's about women who work and breastfeed- It's all real women's stories, and it's very helpful! I probably won't always be this prepared, but it certainly will help for the first week!

The only thing that I'm lacking is new clothes. :( Besides it being fall (and cold, cold weather already here!) and wanting to go shopping for that reason, I'm also stuck between my clothes. About two pairs of my pre-pregnancy pants fit. The others are still too tight, and my maternity clothes are too big. Hopefully I can find enough to wear. The pre-preggo pants fit everywhere but the tummy.. hopefully that'll continue going down over the next couple of months. I'm not TOO far off from it.

Westen and I baked orange pumpkin sugar cookies yesterday. Today I made almond bark pretzels. My dad also gave us a straw bale this past week, and we got four pumpkins to put around it. I love this time of year.

Another big thing I'm dreading about work (can you tell it's very much on my mind?!) is my car in the mornings! The heat doesn't warm up until you've been going over 30mph for several minutes. Since the daycare is here in town, I really don't go over 30 at all.. and it's only minutes away. If I start the car earlier, it still doesn't warm up. It's very aggravating, and I'm worried about it with my poor little baby! I don't want him to be cold. I'll have to have it looked at, but I've heard it's something Chrysler's do.. and even that will have to wait until we have the money to do so. We went through all our savings during my leave and what we have now is saved for Christmas. Maybe something will work out...

Tiny Treasures Tuesday: 2 months, GAL

Aeson is two months old now! He's starting to smile more and more.. it's absolutely darling! I have yet to catch it on camera, but I think I should be able to soon. :) We left him for the first time this weekend. Eric & I were supposed to go to a Cubs game but we ended up not getting our tickets and not wanting to go! So we just got a refund and decided to go on the Spoon River Drive and still let his parents watch the kids. I was a little nervous but all went well. Aeson was pretty cranky all day, but he is often.. even with us. I can't wait until he's a happier baby! The gas drops seem to help somewhat. I'm nervous about next week.. him going to daycare AND being home with Daddy.. when he's super attached to Mommy! Hopefully it'll be a relatively easy transition.

Aeson had his checkup yesterday and he has gained 3 whole pounds in the last month! He's 12lbs, 3oz and 24 inches long. That leaves him in the 58th percentile for weight and the 80th for height! He's definitely caught up. :) It's always reassuring to know that he's getting enough breastmilk! His head was only in the 20th percentile, I think, but it certainly doesn't look small. Westen's was always on the large end but it never looked like it either! Overall, Aeson looked very good. He does have a hernia on his belly button, but she said it was nothing to worry about.

I'm completely torn on whether or not to vaccinate. I've heard (and read) so many horror stories. I keep leaning both ways, depending on what I read. I need to decide soon too, because he starts daycare next week and his doctor would like them done before then if I decide to go ahead with it. I'm obsessed with learning all about it.. but pretty much everything really is just opinion.. nothing has been PROVEN either way. Puts mommy's in a hard place!

***

This week, Westen has been obsessed with his batman/spiderman/transformer figurines and football. He LOVES playing with his football, and it's so cute to hear him say things like "I'm deep!" He always, always has to show off and will continue to repeat things if people found them funny/cute. He's very imaginative with his figurines too.. building garages out of dominoes for his transformer.. getting the other figurines to climb on things.. etc!

He's also a sweet child.. He hates when he hears anything dies, and he was quite concerned about the fish we feed our (bigger) fish.

We had the meeting with the guardian ad litem (basically an attorney for Westen) last week and it went very well! She said she can tell Westen has such an optimistic outlook on life. :) She set up scenarios in which Eric would interact with Westen and, of course, all went well and the (good!) report should be completed this week.. leaving only the adoption hearing left to make it all final!

Job

I've been considering staying home and doing in-home daycare... I would have to watch 3 more kids (plus my 2) to make more than what I make at my job. I can't decide, though, not knowing what it will be like! Any thoughts/ideas/advice??

Tiny Treasures Tuesday: 8 weeks

(Westen and Kaden at the high school homecoming parade)

We went to my old high school's homecoming parade and game last weekend. Westen had a good time, even asking questions about the game of football. During half-time, the band was playing and Westen said it sounded like "a sad elephant." LOL! The only thing I can think of as to where he got this is Little Einsteins.. They put music to objects quite often. :)

Over the last week, Westen has been asking what a lot of words mean. Some are easier (demolition, job), while some are much harder (a model (like of a home), the future (to someone who doesn't even know what tomorrow means!)). Just now he asked what a heart is! :) He knows it's in his chest and "beeps," but I guess he wanted more detail!

Aeson's now 8 weeks old! I can hardly believe it. Of course gestationally he's only 4 weeks. After talking about him not smiling last week, he's had several small smiles over the last week. It makes us incredibly happy to see! They're the most darling things ever.

We also attended our first wedding and reception with Aeson.. He was very good during the wedding and slept the ENTIRE time at the reception! The picture above is from there. :)

And now.. he's screaming his little head off, so I better get to feeding him!

*write about your little ones! hosted by Lerin at mycatholicfamily.blogspot.com