a short one for once

-I figured I should jump on the bandwagon w/ everyone doing bullet point posts lately--I know, I know, my blog is always long and wordy but maybe if I update short posts more often I can cut back on that

-I joined the MAGIC Foundation (Major Aspects of Growth In Children) and in becoming a member they sent me this great comprehensive guidebook about RSS/SGA. I've been reading it everyday bit by bit (its LONG and a lot of medical jargon) It has been great! I actually understand the genetics (shock!) and it makes me appreciative that I had to take statistics in college and learn how to read medical & academic journals--who-da known that would come in handy?? (and thanks again to my sister Devon who taught me & my classmates college statistics over speakerphone since our prof was an idiot)

-We leave for Lake Barkley on Wed--and I am such a buzz kill already, I know it will be fun but I'm dreading it simply because I dont want to pack. Vacations lose alot of their fun factor when you have to pack for 3 people, calculate amount of frozen breastmilk to bring and factor in all possibilities so you dont run out, etc. That and the fact that I will have to unpack our suitcases from Cleveland to re-pack them for Barkley...I know, thats sad right?

- I've been thinking alot about my marriage lately and I just love Donnie and am so thankful that I am in a Christian marriage above anything else--I'm going to this seminar at my church about this book "The God Empowered Wife" I read it not long after I got married but I wanted to go back and re-read before the seminar...I just love this: "Relationships are God's vice grips. They squeeze you until your sins ooze out--sins you wouldnt have had to face otherwise, but that enslave you and separate you from God" Wow! doesnt that make marriage sound so fun!? haha actually its great and so true...I could go on and on about this book but I'll save that for a long post after the seminar

-Man, I suck, even my bullet points are long :-/

a day off from being a grown up

I really wish sometimes that I could just have a day off from being a grown up...where I could just do nothing, and think about nothing while I was doing nothing. While yes, I have been VERY lucky as of lately to have a day to myself with my best friend (thanks to Pam and the sisters for watching Nicholas for me!) I still spent a majority of my "free day" thinking about what I have to do, what is going in in my little family, etc. It would be glorious to just sit and do nothing, not think about anything and have someone who would prepare all the meals, keep my house clean, etc. Basically I want a mom for a day and I want to have a child-like thought process for just a few hours...ahh to be a kid again..


Since this is obviously not reality I suppose I will update on what has been going on in the last month. I am a horrible blogger as of late, and I know this post wont be much better. My posts are always long and wordy and full of details that I know nobody but me really wants haha But it is nice to go back and look at past posts and reminisce about what was going on in my life especially since its been a year since I started my blog (I think?). So July was a crazy hectic month, in June I had my highschool reunion and I feel like since then things have been on fast forward. Nicholas had his first ear infection which was not fun, and I'm pretty sure he's begun teething. At the end of June we went to Terre Haute, IN to help my sister move which was fun to see her new house and spend time w/ her boys who I miss terribly when I dont get to see them. Hopefully I will see them more often now that they are only 3 hours away (as opposed to 8 hours away in Madison,WI).


On our way back from Terre Haute we stopped in Indy to spend the night w/ my best friend D and her husband. Then on June 30th I also went to the Midnight release of Eclipse w/ my best friend D and my sister--it was awesome and for those that dont know I am a closet Twi-Hard :-)


Then we got home and were home for a few days then we had a big picnic at our house w/ family and friends which was a blast. I got to see my brother who I hadnt seen since Sept. 2009! and I got to meet his beautiful girlfriend :-) My sister and her husband and kids spent the night at our place which was so fun and gave me a glimpse of what my life will be like in a few years--a house full of fun, rambunctious boys! Cant wait! We took her oldest 2 fishing for the first time and it was so cute! They both caught a fish and actually were more patient with the fishing than I anticipated they would be (considering they are 5 and 3 years old). Donnie also set up a 100ft long slip and slide for them at our house which I of course "tested out" before the boys went down...uhm I would not recommend doing a slip n slide over the age of 10. I got going a little fast and flew off the end another 5-10ft haha I really do wish I had video of me doing this because I am sure I looked completely foolish! But it was fun :-) Then Nicholas had his 1st 4th of July celebrations to attend--we went to dinner at Donnie's sisters and then fireworks out at Gautrauds which was fun. Nicholas got to experience his first fireworks (kinda? he saw a few then I put him to bed while the rest were going off)


I also had a fun bachelorette party for a good friend which was so fun to go to now that I am married haha and then that same evening I actually went to ANOTHER bachelorette dinner and party (bus) haha it was really fun to go out and party and you know me...being thrifty...I brought my own drinks along in my purse haha I spent most of the evening talking about Nicholas with another one of the new moms who was on the party bus--we are so exciting! woo hoo! not. This month I also took Nicholas swimming for the first time which was great fun--he loved the water and he basically looked adorable in his "swimming costume" as my mom calls it ;-)



Then I had Nicholas' 4 month well visit--this was quite an event for me. Now I will preface this section by saying that I wasnt sure if I wanted to blog about this stuff but the more and more I think about it the more and more I feel okay sharing this info--it will save me from awkward moments in the future (having to explain then) and I know that my blog has been a blessing to many women who have privately messaged me (other moms who had IUGR babies, bed rest experiences, etc.) So I am blogging about my experience not to allow other to be voyeurs into our life but in hopes that I can provide some peace or understanding for another mom in a similar situation who happens to search and find my blog. Okay that being said:

so Nicholas had his 4 month well visit with Dr.Deis (who is great by the way! I highly recommend him!) and at this appointment a few concerns were brought up by the dr. Nicholas is obviously still really small. There's no beating around the bush about this, his weight gain has never been horrible but its definitely not great and usually around this age is when preemies (or SGA babies) sometimes start to catch up/make great gains in their weight/length. Nicholas just isnt, and along with a variety of other characteristics and things we have been struggling with (eating issues, reflux, etc.) The pedi recommended we take Nicholas to Children's to have some genetic testing done. This was a shock for me...kinda. When I was in the hospital with the IUGR stuff I had done some research then about genetic causes for IUGR but didnt look into them very much because its hard to do that before your baby is born (you dont know what symptoms to look for, etc. so what is the point in scaring yourself until you are faced with it after your child is born). Anyway--so the pedi wants us to take Nicholas to be checked out by a geneticist, and a gastroenterologist at Children's also (to check about his reflux) and also wants a consult w/ plastics at childrens because apparently Nicholas' flat spot is getting worse/not getting better and he may need helmet therapy for his plagiocephaly (fancy word for flat spot). I of course hold it together during our appointment (and Nicholas getting shots which really was just icing on the cake to my already *fantastic* appointment)


After the appointment I of course lost it--so many thoughts going through my head, just the overall fear of what this could mean, I felt incredibly overwhelmed just at the number of appointments we were going to have. So I schedule all the appointments and we have our genetics appointment first. So first: praise the Lord! Just in general--for everything! Praise the Lord that I am a stay at home mom (and that we can afford for me to be one!) With all the appointments its MUCH easier to schedule them having a completely open schedule. Praise the Lord that we live where we do and we have an AMAZING Children's hospital 20 mins. from our house--we arent having to pick up and travel to go see these dr's. Praise the Lord that I have a pediatrician who is so on top of the ball that he is acting proactively about these issues--he isnt waiting for the you know...crap to hit the fan...before referring us for consults (and I am pretty sure he is a Christian which just makes it all the better!) Praise the Lord for a husband who knows just what to say to calm me down when I call him in frantics and Praise the Lord for a family (on both sides) who are so supportive, calm, loving and just amazing!


So we had the genetics appointment a few weeks ago-- before the appointment I did some research of my own and looked at symptoms/characteristics of the suspected condition (which Nicholas has like 90% of the characteristics), and looked at some pictures of children with this condition (some were like mirror images of Nicholas--which literally my heart stopped when looking at some of these pictures. I just knew before we had the appointment what the result was going to be). So after a great appointment with a geneticist and a genetic counselor we have come to the result that Nicholas does in fact have Russell Silver Syndrome. This explains SO MUCH! It explains why I had all the difficulties in my pregnancy (doesnt quite explain the hyperemesis but I found that many other women who have RSS babies also had hyperemesis even though there is no medical link per say). It explains the IUGR, it explains his small size, it explains everything! But it also has its hard points--there can be some difficult side effects with Russell Silver Syndrome which I am still dealing with accepting.

Every mom thinks their child is perfect--and Nicholas is in my eyes. This diagnosis doesnt change anything really for how I feel about Nicholas but if anything its just another opportunity to turn to the Lord with open hands, ready for what He wants to give me. (Not to down play that this has been a struggle for me-- I sometimes want to close my "open hands" into fists and stomp and scream like a little kid having a hissy fit because its just "not fair" that we went through everything we did and this is the result) But I know that already Nicholas has been such a testament to the awesome and mighty power of MY God! He is and always will be our miracle baby--I know that God has such a special plan for Nicholas and I know that He is going to continue using Nicholas to teach Donnie and I more about Him. There will be struggles up ahead in the road but at least we now know what we are dealing with--we can take this head on and get things moving, getting Nicholas in to see all the different dr's he needs to see (urologists, geneticists, endocrinologists, cardiologists, gastroenterologists, plastics, orthopaedics, and probably more but that is just the list for now). I really also wanted to post this because I know that as Nicholas gets older and doesnt get much bigger there will be lingering questions and thoughts.

I'd rather just answer those questions and thoughts now--through this--than in the future. I know that Nicholas is such a tiny peanut and always will be and I will have to work on my generic "answer" for when people ask me why he's so tiny still (which is already starting). But I know who reads this blog (for the most part) and its people that I know will be loving and respectful and kind in reaction to this :-)

So after we had this appointment and got this somewhat difficult news we also got some more difficult news that evening. We found out that my Uncle Jeff passed away. I still have such a sad and heavy heart about this news. My uncle was such an upbeat, funny, caring man. He always had such a positive outlook and had a magnetic personality. He will be missed VERY much by MANY people. He was a wonderful father (he has an 8 year old daughter), a great husband, and a fun uncle--his funeral was a great service and it was so nice to see how many lives my uncle had touched. I am so glad that Nicholas was able to meet my Uncle Jeffy during easter this year.
These pictures are my last memories of Uncle Jeff and I'm glad that I am able to have positive, happy memories to recall back to. We will miss you Uncle Jeff!