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Saturday, December 17, 2011

Only the best!

So this past week was a busy one yet again!

The other night, Josh and I were in the living room and Brielle was in the family room with the dogs and the tree. She had her walker and was playing with the dogs. The dogs dropped their ball so Brielle went down to get it. She was in a crawling position and stood up all by herself with NOTHING to hold onto!!! Now, I dont think I can express in writing how HUGE this is!! We have been working on this for 2 months!!!! After Ms. Lisa has showed her over and over, she FINALLY DID IT!!! I of course, had to text Ms. Lisa right away!! She was soooooo proud!!! Ms. Lisa also has us standing her on a wall or the couch to let her get the feeling of getting her balance herself and then starting to walk when she feels ready! She is doing sooooo well!! She can take up to 5 steps! I think we get sooo excited, we make her soooo excited so she trys to run to us and then looses her balance. If she slows down she does better. But shes doing AMAZING!! Orthodics come Tuesday!

Monday we had Speech therapy. That was a good appointment. Over the past few weeks we have been working on getting Brielles Diaphram and rib cage to lower/stretch out. So to achieve this we take our thumbs and apply light pressure on her back. Our other 4 fingers go around her front and on her ribcage. You apply the light pressure on your thumbs and then the 4 fingers pull back towards your thumb. While doing that, you put her on your legs and bounce her. You can tell how she opens up because she starts "singing." Ms Lisa could definately tell she was opening up more and she said she sounded louder!! Thats one thing almost everyone tells me is that Brielle is soooo quiet. Hmmmm Must just be me that thinks otherwise :)

Tuesday we had physical therapy. She said Brielle is tighter than 2 weeks ago! Her hamstrings are tight and her lower back is now tight. So to stretch that we just put her on her back with her feet on the floor, knees bent and have her lift her pelvis to create a "bridge" NOT a big fan of Brielles! Her hammys are tighter due to her wanting to walk more and more! So just keep stretching as much as we can.

Occupational came Tuesday as well. We have been working more and more on Brielles Sensory Integration disorder (SID). She brought a bunch of toys. Im not sure the "correct" term what have you for them, but they are the slimy, stretchy etc. Brielle was not exactly into them but could not put them down. Her face was "YUCK, ICK, UH!" But she couldnt stop grabbing for them. Ms Terri gave us a "corn brush" to desensitize her. We have to rub each arm from pit to wrist, leg from hip to ankle, Back from Diaper to neck line, Hands, and feet Every 2 hours! We dont do her face or her head. This should help with the SID. "Red Flags" Of SID that we have noticed in Brielle are Sensitivity to loud sounds (ex. at the parade, she did not like the horns, loud music etc.), movements (If you scare her she really freaks out! Ask Papa Brad!!!!!) Those are increased sensitivity. She has Decreases Sensitivity to foods. She prefers spices and the more flavorful foods. As we are finding out with her refusing to eat, anything with alot of flavor such as Chix alfredo, lasagna, taco meat...Are more appealing than chicken nugget or cereal. Increase or decreased in activity level: Increased sleep. Brielle will usually sleep 12 hours at night and take 2-3 2.5 hour naps per day and then 1 hour nap. According to her ped, a "normal" 18 month old take 1-2 naps a day. Little signs, but they all lead to it. Brielles worst SID is on her feet and chest. My "Theory" and OT doesnt disagree with me, is that she had soooo many heel pokes (And has quite the scars to prove it!) she doesnt want anyone touching her feet! The nurses actually warned us of this in the NICU already. Her chest?? Not sure since she hasnt had any surgery on her chest. Maybe the leads???? Not sure where that one came from.

Wednesday we had her RSV shot. Number 2 this winter. Dad was unable to make this appt so I went by myself. Uhm, Ya! Probably wont happen again. The nurses always seem like they are in a hurry, as they usher you in a room, tell you to get undressed so they can weigh, rush off to get a new baby, put them in a room, come get you, get weight, go get new child, give shot, They are ALWAYS running! So anyways, I went to put her on the scale and she FREAKED.Out!.! She was trying so desperately to get in my arms they couldnt get a proper weight on her. So I had to try to force her to lay there which wasnt going to happen. After a minute she finally just caved and layed there and cried and we got the weight. Imagine that, From 2 weeks prior NO FREAKING WEIGHT GAIN! UGH! But I guess atleast she didnt lose any. So we get back to the room and shes fine playing what have you. I got her pj top on and put her coat on since I knew after the shot shes NOT a happy girl and hates putting her coat on anyways. The nurse took awhile to come back in. When she came back in, Brielle immediately FREAKED out once again! She wasnt even on the table and she was already crying. Talk about feeling like a shit ass mom when you have to lay your screaming child down to be pinned down by the legs to get poked not only once, but twice! I felt horrible!! I know the shots are the best thing for her but damn it makes me feel horrible to put her thru that! This poor child has been thru more crap than most adults have in their 40s!!! And then when I went to put her in the car she grabbed my jacket and put her head on my shoulder. AH! Talk about feeling bad for not being able to cuddle!!

Then Thursday we had to go down to Milwaukee to see a pediatric orthopedic about the never ending hip clicks. Josh lays her on the table so the doctor can just rotate her hips....Flips out!!!!! It amazes me how their little minds are sooo mature to know or remember certain events. The conclusion of that appointment was that Brielles hips look great. Hip Displasia out of the question as she is now too old and would have had it already. YAY! He said that she is a prime candidate to develop some sort of neuro muscular problem down the road, but it is much too early to tell if that will or will not happen at this point in time. He said that she has some soft tissue in her hips that is causing the clicking. But nothing to be alarmed about. He basically told me to ignore/forget/discard/try not to get excited about the clicking. YA okay! Everytime she clicks/pops/clunks etc I cant take it. It feels so prominate it hurts me! But I did ask him if she was in any pain and he said absolutely not! Okay, thats all that matters! As long as she doesnt feel it, Ill learn to "get over it!" Of course Josh had to say "Told you she was alright." Maybe she is. Maye I thought she was. BUT as a mother, it is NOT okay for me to not check up on any concern I have. If I would have waited a year and went in and he said "O if we would have caught this sooner......." I couldnt deal with myself. I guess from the gecko we've always had to cross our Ts and dotting our I's with her and I just keep doing that. I dont want to miss anything that can be fixed, slowed down, or altered in an way! Im trying my damnest to give my little miracle the best life possible! She deserves the best!

Saturday, December 10, 2011

Thank you everyone!

So my mom pointed out to me today, after talking to two former NICU parents she ran into, that I need to start blogging more. My words, not hers. I guess for myself, I thought not many read anymore. But looking at my "Stats" page and people commenting to me about peices of my blog, and people telling family they love to read the blog, I owe it to everyone of you that have kept up and keep reading my venting, good news, bad news, important, not important BLOGS! To those of you that are keeping up with our life and enjoy reading, THANK YOU! THANK YOU! THANK YOU! I enjoy blogging. I love it for a few reasons.

1. Its my "therapy." I get all my feelings out and on paper and I dont have to bottle them in.

2. I cant forget to tell people things!! I feel like my head is being filled up with helium and Im trying to weight it down. There is so much going on, and so much to remember, I cant keep up! So its a good place to put it all down and I can look back if I forget or I can tell people to just read the blog! Plus, more so when we were in the hospital, I dont have to call 10 people and repeat myself time after time. Sometimes Im just exhausted from the inital news, or what have you, and I dont feel like telling anyone! So its just to have it out there so anyone can read our latest and read in their convienience!

3. I love the fact that I will forever have this and it is something that Brielle can eventually read! (And know WHY her father is gray at 30!)

4. I hope that my blog reaches out and touches atleast one person! If I can some way, some how touch one persons life, My job is done! When my water broke, I was clueless! You are supposed to carry to 40 weeks. I was 20. I had always heard you had to deliver that baby 24 hours after your water broke. I was 20! I knew my babies wouldnt survive. When faced with the question to terminate, YES never crossed my mind. I wanted these babies in the worse possible way. I would not give up. But there are alot of women out there that do. If one of those women find my blog, and do not terminate due to pProm, My job is complete! I want the information OUT THERE! Which is why my blog is public.

We had Brielles 18 month check up Monday. This appt didnt go as well as her others! She lost weight from her 15 month appt. No gain. LOST! She is 19 lbs 2oz. I kinda knew this as she was 19lbs 4oz 2 weeks ago at her RSV appt. But as I was talking to her PT today about it she said that CP kids do loose weight as they have low muscle tone so it takes SO much MORE to do the little things, like walk. She burns more trying to do those things. Ok, Makes sense! And I did read that from another CP mom. Dr. Krainik wants me to bring her back in a month and see where she is at on the scale etc. Hes not toooo toooo worried about it YET, but wants to watch her closely. My worry is, I have been journaling now what she is eating (just in case, cuz Im a freak like that!) and now that its on paper, its not alot of food! So Im hoping its more so that its the muscle tone and NOT eating habits. This girl used to be such a good eater, sometimes downing 2! hot dogs at a feeding and a whole can of oranges! to skipping lunch or dinner most days. :( I just dont want her to loose too much weight as I know its important for development.

Ive been putting Brielle on the big girl potty! Shes pooped 5 times so far by herself on there!!! Since we started it about 2 weeks ago, she hasnt pooped in her diaper. Shes pretty proud of herself!! She quite funny, Josh told her to "Grab your ankles" while trying to push, (remember this girl is constipation QUEEN!) so now, her Que that she has to go, she pulls her ankles up when shes sitting. Its cute! But lets us know too! :)

The other night I was changing the birds water and I had just taken down the baby gate on his door, and set it outside his door against the closet door. I grabbed the water dish and headed out the door. Brielle had followed me in there, so I just turned her walker around and scooted her out the door. I cut the corner too short as I was stepping around her, and took the baby gate out with my right leg. The metal part grabbed my leg right above the sock and dug in and I went straight down on the wood floor. There was no time to even catch myself. I fell hard. The water went flying and down I went. Brielle of course FREAKED right out, crying hysterical. Josh was trying to roll me as I was face down. I thought I broke my leg it was that bad! I told him to not touch me and go get Brielle. Brielle was still freaking out so I knew I had to just suck it up and get up because she was panicking now. So I sat up and took off my drenched sweater. Josh set her down to come by me and she couldnt get by me fast enough. She got to me and hug me so quickly and......PATTED MY BACK! AWE I cried even harder then!!! It was like "Its okay mommy!" :) My little girl!! OOOO how I love that little girl!! She wouldnt stop giving me hugs, it was freaking adorable!! 2 bruised knees later and quick the mark on my leg, I learned how caring my 18 month old is!

Yesterday Brielle took 4 steps unassisted!!!! She is a maniac with her walker!! Now by walker I mean a push behind toy. She whips that thing around to go wherever she wants. We take it everywhere with us as you can tell she is truly proud to be able to walk and the freedom to get around. Physical therapy was going to put her in a walker that we special order but because she does sooo well with the cheapo $3 rummage sale find walker they just left it at that. She even has walking with it going backwards down! She has even mastered running with this walker! She still trips and falls, but shes not discouraged and she gets right back up and goes at it full force again. Her orthodics come Dec 20, so Im hoping then she will get walking down pat. I know that she is going to LOVE the walking with nothing to hold on to. She always tries to set her dog on the walker handle and go with him, but he always falls and then she just pushes it with the walker. The other day I was Not feeling good so I just layed on the couch and she had free rain of the house. She was an angel!!! I was very proud of her! Only once did I see the whole entire tree shaking like crazy! The dogs were fighting so I told her to break them up. She did!! I was impressed! She whipped her walker around and went full force between them! It was quite funny! The dogs were like WTH just happened! But it stopped them! hehe

Today was Brielle intervention christmas party that her therapists all put on for the kiddos. Brielle did not like santa one bit!! She wouldnt even go close to him!! It was nice to see other kids with special needs. Other kids with walkers. Other kids her age not walking etc. Makes us SEE were not alone one bit. It kind of puts me back in reality as well. There were 3 kids in wheel chairs. Cute as a button! But it totally made me question why I think I have the right to be sad about my 18 month old thats not walking yet. But then I think back to the training class I had to take to be a parent host in the NICU. They taught us that everyones "WORSE" and everyones "GOOD/OK" are different. A minor hernia surgery, where the baby goes home THAT day, like Brielle had, may be the worst thing for one parents and Ok for the next. Everyone views situations differently. Alot of people tell me how strong I am. How they could never lay in the same bed for 3 weeks and never get up. How they could never do a 98 day NICU stay on top of the 3 weeks. How they could never handle a baby on oxygen. How they could not do all the therapys, Drs, or CP diagnosis. My answer is, yes you can! Yes.you.would. Its easy to just give up. Its easy to just walk away. Its easy to not try. Trust me, there are days where I could just crawl in a hole. But what good would that do? If I wouldnt have layed in bed, Brielle probably wouldnt be here. We didnt have a choice to do a NICU stay. I think when your in the position, you go into survival mode. PLUS, the NICU staff, Drs, nurses, and respirtatory therapists were AMAZING! We only had one nurse that we had problems with, and that was taken care of right away, The rest were amazing! We could not have asked for better care! Not only care for Brielle, but us. Alot of those nurses became our friends and second mothers! They seen us in our best place possible, but also were there to hug us at our worst moments ever. We cant ever repay them! They are miracle workers! And I have quite the smiley, happy go lucky, little girl to prove it!!

Wednesday, November 30, 2011

Brielles Team of Doctors/Therapists keep growing!

Today was Brielles Physical Therapy appointment. I was going to bring up how much more I thought her hip was clicking, but the therapist caught it right away and questioned it. (I love Lisa!) Anyway, I told her that I did not like the "opinion" of the Rehab doctor we went to see a few weeks back. Her opinion was to just watch it and see if it got worse or less and see her again in March. I was uneasy about that response to the clicking as Brielle has always had clicking since day one. But I thought I'll go with it seeing as shes the doctor but its still on the tip of my brain and I WILL be watching it close. So as Im watching it closely, Ive noticed its clicking pretty loudly and alot more! If I hold her, and she turns to look in a different direction, her hip will click. Its pretty dominent which freaks me out! So Lisa grabbed Brielle right away and BAM...HIP CLICK! She said she stopped counting at 10 and that was only in a matter of minutes. MINUTES. Thats not right. Thats not normal. She said "Im worried." I felt bad. I started to tear up. Mother intuition? Mothers gut instinct? Yesterdays blog post came to me. All the therapy appts this week (1 more to go!), and now my gut instinct was right and now the therapist is officially "worried." She said that it is not right that her hip is clicking and popping this much! She was commenting how badly Brielle just wants to GO and WALK and that got to me too. I just couldnt hold back the tears. I knew Lisa felt bad, and that wasnt my intention. Alot of moms say Im strong and they couldnt handle what Josh and I are handling, but somedays I cant handle it either! There are days I just wish I had a "normal" life. I try hard to get past those feelings. I love this little girl with all my heart. She is so perfect in my eyes! Her little giggle lights up my life! Her smile lights up a room! Its just not fair she has to go thru all this crap! Sooo we called up a Pediatric Orthopedic and we are headed to Milwaukeee once again. So Brielles team of Doctors and therapists keep growing.

Early intervention Teacher- Gretchen
Physical therapist- Lisa L
Occupational therapist-Terri
speech therapist- Lisa B
Pulmanolgoist-Dr. Noe
Pediatric Rehab and medicine Doctor- Dr.Morberg
Orthodic therapist (Spio and Brace guy)-Peter
Pediatric Orthopedic-Dr. Tassone
Pediatric opthamologist-Dr. Parsa
And her everyday Pediatrician-Dr. Krainik

My calender for December is already full. When will this madness stop?? I will take a slow down for now!!!!!

Tuesday, November 29, 2011

Busy, Busy, B-U-S-Y

Not a whole lot to blog about lately. Last week was a nice low key week! It was Thanksgiving and we had NO appointments that week! But this week we are paying for it! Brielles schedule is:
Monday- Orthodic molding for her foot braces. We got to pick out a pattern (not many "Cool" ones to pick) but I picked one that is Bright and cheery! She will get those back December 20th. Just in time for xmas! I have mixed feelings about them. Im sure it going to be a total melt down just like her vest, but then I will adjust. I just feel horrible when people look at her like shes different. I think thats why I hate the "You look tired" comment. NO SHE LOOKS BEAUTIFUL! FULL OF LIFE! SHES MY MIRACLE! SHES NOT TIRED!!! I find myself just shutting down when someone says that. Im NOT sure why it bugs me so much! It bugs me when people tell me to shrug it off. HOW? WHY SHOULD I? Until you've gone thru what we have gone thru and truly understand WHY it would bug a parent when countless people, EVERYWHERE you go, tell you your child looks "tired" you dont get it. Trust me, Id LOVE to ignore those people, but I cant. I cant get away from them saying things unless I dont go anywhere. I Wont shelter Brielle. I just wish I knew WHY people say that! It really bothers me! I think alot of it is my "Guilt." I have ALOT of guilt of having my babies too soon. I couldnt hold them in the 16 weeks longer they needed! Hell I would have been happy with another 10 weeks. But I failed them. And now Brielle is paying the price. She has to wear a spio vest, now she has to wear braces to walk. Shes 18 months and not walking. Thats tough on me. I look at my 13 month old neice who is running everywhere. It crushes me that Brielle cant have a "Normal" life. I know to Brielle its normal, but I know its not. Brielle didnt even sit until she was 13 months old. Its all hard. Its all taking its toll on me. The only thing that I hold on to is BRIELLE WILL NOT REMEMBER! I just Pray to the good lord, that this all starts to resolve itself before she starts to "know" she is different than other kids her age. I dont want kids to ask why she has to wear braces. That part crushes me!!! Kids can be so.damn.cruel. As the tears now fall for Brielle, I hope she NEVER EVER has to EVER encounter that!!!!!!! Ok melt down coming....Ill end it there!!

Tues she has Occupational Therapy
Wed she has Physical Therapy
Thurs she has Speech Therapy
Monday is her 18 month Well baby Check up. 18 freakin months already!!!!! Holy man where did the time go??????? I feel like just yesterday the twins were born! We just left the NICU! Now shes crawling and getting into EVERYTHING she can get her cute little petite hands on!! Its insane!!

We put our xmas tree up Friday. It now has NO ornaments on the bottom 3 feet :) Brielle thinks they are balls and proceeds to pull them off the tree and throw them with her cute little "UH" as shes throwing. lol Shes probably a little cute terror because I laugh. So of course she does it again and laughs. Whatever, she'll learn her boundaries one day :)

Her latest is waving. She will wave to the TV. Josh usually puts her to bed at night (And I get her in the morning) and she waves Bye to me as shes leaving for bed (SOOO adorable!) She will walk away in her walker and turn to wave. Everything is waving! Not many kisses anymore, but they will come back! :)

Her new word is papa. Anything like...baba, papa, dada, gaga..those are her words. O and Im "MOM" now... :/ Sounds so OLD! And its usually only said when shes mad!

She knows how to suck outta a straw! And actually I can get the most fluid intake in her thru her straw sippy cup! (Sorry if any of this is repeated!)

I hope everyone had a great thanksgiving! We did! We were very thankful to have Brielle to put smiles on our faces this year! I did alot of thinking of the families that DONT have their children home or here anymore to spend this time with.
We took my 13 month old neice with us Friday to get our tree. Everyone thought they were twins. They are the same size, but dont look alike...But anywho, that hit home. This would have been our life with Ayden and Brielle. I try really hard to just accept that hes not with us anymore, but dang it isnt easy. I miss it for my own reasons, but I miss it for Brielle. You always hear and see the "twin" connections made. I feel bad she will never have that. She will never get to know that Feeling! The other day she was saying good morning to Ayden. She was touching his urn and his foot molds and some of the other momentos we have in his cubby. It was sweet. We wont ever let her forget her Brother. Her hero. Her TWIN!

Saturday, November 19, 2011

Brielle in the newspaper!

Brielle was in the newspaper today! Here is the link to her article if anyone would love to read it! It also features 4 other miracle babys and their mothers that I personally know and adore!!

http://www.postcrescent.com/article/20111119/APC04/111190309/From-struggles-hardships-come-great-joys-parents-premature-babies?odyssey=tab|topnews|img|APC-Life & Style

What you cant see, is she was on the front page of the living well section! Which in our paper is an insert! She was also on the front cover or the main newspaper, telling people she was inside! Pretty exciting! Our little movie star! :)

Friday, November 18, 2011

Appointments and new things

Lately I feel like my blog has been just a place to vent about MY stuggles. While I do feel its good "therapy" for me to just jot it all down and get it out, I still want to keep it about the main star, Brielle.

Last Tuesday we had our appointment with the pediatric rehab and medicine doctor in Depere. I have been having my fair share or "Freak out" moments. I like to think of myself as doing a pretty well job of keeping it together, and Im not sure whats come over me. I have TONS of stress right now, maybe its just finally catching up? I dunno, ANYWHO...Josh took off to go to the appointment with me. I feel bad, because he is an amazing husband and an even more amazing dad! I could listen to him make Brielle laugh ALLLL day! I love the smile she gives when he walks in the door! Even tho he only gets to see her about 3 hours a day, hes the best with her! She definately loves that little girl! And I can see it in her face, she adores him! They play the "Im going to get you game" and she is hysterical because he will just sit on the floor and She gets sooo excited. She starts this little giggle and she comes by me really fast trying to get away from him. Its hilarious to say the least! Her favorite game by far now! O Geesh, Im so wrapped up in Josh and Brielles relationship, I forgot I started to talk about the Dr. Appt. Hehehe, okay so Josh took off to go with me. I felt bad because during one of my "vent" crying sessions, I told him I feel like Im doing this all alone. Which I basically am, but I know I have his support 150%! What I mean by "all alone" is Im the one at every Dr. appt, every therapy appt, etc etc. He has no choice. Hes expressed he wishes he could be at therapy, he just cant. They dont work past 5 and he works til 4:30. There isnt a choice in the matter. Im NOT blaming him for my feelings, Im just feeling overwhelmed. And when he gets home from a 12 hour work day, he wants to play and love her. So I work on the therapy all day. I fill him in, but over the last few weeks, Ive realized Im not doing a very good job of filling him in. Ill say something and he'll be like "Huh, You never told me that." Im overwhelmed. I forget. I think I told him, I didnt. Its just all too much. I feel horrible that I dont tell him stuff, I dont do it on purpose, I just forget. My brain feels like mush. I used to be SO good and remembering EVERYTHING. Now I cant remember what I did this morning. So after all that, Josh felt the need to come to this therapy appointment, since it was with a specialist Dr. The appointment went VERY well! One he didnt need to come to as I walked out of there pretty happy, but Im glad he was beside me to share in the happiness! Basically Dr. Morberg said that for being a 24 weeker she is doing AMAZING! She could definately see her "flaws" but she felt they were workable. She put in the order for her orthodic braces. They come on monday to fit her for those and then they take a few weeks to come in, since they want the braces to be made exactly to Brielles foot. So they will take a mold of her foot. She predicts that Brielle will be walking ONE month after she has the braces!! She pointed out that Brielle turns her foot/ankle in towards each other while she stands. So she kind of rolls the foot inwards. When she pointed it out to us I was like OMG how did I miss this??? Thats the part that totally BUGS the hell outta me! When they point out her qorks Im like WTH! I should have noticed that. I guess thats why I have 5 therapists and 3 doctors overlooking her! But still! The clicking in her hip which I feel is getting worse and worse and more and more, is mind blowing. They have no idea why since they took a hip xray and it looks great. So we go back in March to see this same doctor and we are going to watch if it gets worse or less etc. She is thinking because she is learning to do more and more stuff that its clicking. I beg to differ, but Ill be watching it! She also said that the way Brielle is stepping, there is a possibility she will need botox in her legs. Her hamstrings fire so quickly since they are so tight and we just cant get them to stretch properly. She is once tight girl. Also got some insight on her constipation issues. Ive had her on miralax which hasnt been helping! Dr. Krainik thought I was nuts when I told him that. But it makes sense now! Because of her CP she has low muscle tone so she doesnt have the "ability" to push. The miralax simply is a stool softener, but if she doesnt have the ability, its not going anywhere so it just sits there. She wants us to try out a laxative such as Senekot, but I cant find it in the liquid form Brielle needs. Also Smoothe move organic tea. Thats my next step, see if she'll drink it!

Sooooo Now that all the Doctor mumbo jumbos done...Lets get onto what Brielle is up to!

Shhe is becoming a little copy cat, which is amusing! Josh was puting on Hand sanitizer and she started rubbing her hands together like her was :) She will now blow in Joshs face as he does it to her!
She will "rub" the dogs when told to, mostly hitting, but she pets them!
I rub her back while she is snuggling, and I tell her to rub mommys and she rubs my shoulder like I do to her!
She is waving!
She is down to one bottle a day! Mostly sippy cups!
She is drinking outta a straw!
She is climbing up the whole flight of stairs!
Her "lovey" is a pink camo "dog" who she has to have everywhere she goes! And she says "DOG"
Her words are: Dog, Get, Go, Ma, Da, Ga, baba
She signs "All done"
Her hair has come in So thick and long, we are able to put a cute pony on top of her head like Pebbles!! :)
She is IN LOVE with ballons!

Im sure Im forgetting stuff, but for now, theres a preview of what Brielles up to! :)

If I dont get back on, EVERYONE HAVE A VERY HAPPY THANKSGIVING!!!! From the Peterson Family to your family! XOXO

Saturday, November 12, 2011


Quite a bit has happened in the last 2 weeks. Brielles Spio vest fiasco has become easier. I have learned that this vest doesnt go on as easy as her shirt! It is going to take me some time to get "used" to it, so I do it in shifts if I need be. If shes cranky about it, I leave it loose and let her play and come back to tighten it. So now that that is getting better and easier to deal with, Now come the leg braces. Brielle is sitting incredibly well with the vest! In a week, her progress is amazing! Its not perfect, but its coming along quite well! She is starting to stand alot longer by herself! While Physical Therapy was here, Lisa noticed while standing Bri would dig her toes into the carpet and she is starting to walk on her tippy toes. She is also starting to tighten her right side. Right now they diagnosed her as a hemipalgic but since she is tightening that right side she may be a diapalegic. Its hard to give a proper diagnosis for Cerebral palsy because there are soooo many different forms of it. Like Nurse Ann said tonight, its nothing more than the tightening of muscles and low muscle tone. She doesnt like the CP term :) So anyways, Brielle will be fitted and getting those braces soon. Tuesday we go to Depere, WI to talk with a Pediatric Rehab doctor about why Brielles hips click loudly! Im alittle on edge with this one coming up. I think Im afraid to hear more "things" wrong with my child. After having SO many good therapy sessions, and now it seems like everytime they come its something else they find, Im not sure how much more I can take! I almost want to say JUST STOP! shes perfect! (because she is!) but what kind of mom would I be then? I need to do what is in her best interest and try to give her the best life I possibly can!

Today I had 6 hours of training to prepare me to be a volunteer up in the NICU that Brielle spent 98 days! I took alot from it! And I got to use some of it tonight! (Ill get more into what I got form it later....too late!)

My friend, who had twins just like I did, and lost her son, just like I did. The surving twin was Bris roomate. She recently had a anoter baby. Unfortunately early, which means another NICU stint. She, obviously, is struggling with quite a few feelings and emotions! I totally UNDERSTAND! When I walked back into the NICU, mind you, this was the first time I would enter a POD (Room) since Brielle left 14 months ago, I got pretty sick to my stomach. My heart started beating super fast! Luckily, I had one of the many amazing nurses I knew quite well and she talked me down and had me scrub in the room instead of the scrub station that was making me sick. The smell of the soap. Watching the 2 people ahead of me scrub in, Like I had done HUNDREDS of times before, signing in and taking a name badge, like I had done HUDNREDS of times before, picking up the phone to get buzzed in, LIKE I HAD DONE HUNDREDS OF TIMES BEFORE! was alittle much! But I had to do it. I had to do it for my friend. I had to do it eventually, because I signed up to be the volunteer. Lots of moms and dads and families need me eventually. And I kept telling nurse Ann that, I gotta suck it up, but she was wonderful about it (as she always is so positive all the time!) and said, No you need to take time to get back in it and make baby steps. She knew it was a huge step to walk back in there! Anywho, I made it to her room and she was holding her sweet sweet boy! Full head of black hair! AH! So in love already!!! She is truly blessed!!!! Such sweet, sweet, people! We met in that same building (different room) but same circumstances. And here we were AGAIN. Same emotions, feelings, smells, cords, beeps you name it. BUT we have been down this path before. She is strong, even tho she doesnt think she is. SHE.IS.STRONGER.

Before I went to see her, I dropped something off for her (not knowing I'd be seeing her later, but it was nice for the nurses to see Brielle!). I was telling one of the nurses how a mom reached out on my NICU group I started on Facebook for the NICU. Teri told me that mom was actually there at that moment. I got alittle nervous, because I didnt think I would be talking to anyone, and that wasnt my intention when I brought it up, but hey what the heck! This mom and her husband came outand we introduced ourselves and shook hands. I got her story and told her our story! Her son was born at 28w5d at 3lbs 1oz. He was a pretty sick baby but things are slowly turning around! And boy Josh and I know that all too well. This couple is SO positive tho and you can feel their love for their baby just in their eyes alone. They truly are amazing. I am a FIRM believer that your baby can feel your emotions. I tried my damnest to not feel sad or frustrated around Brielle (and do to this day!) because I knew she could feel it. I knew it just by watching her numbers on the monitor. She would desat and need more oxygens etc. It was really weird. They can feel the lightest touch of your finger and know your MOM. I know their little M can feel their love. Can feel their hope and admiration for that little guy after only a week! Keep up the great, positive attitude L & R!!!

All in all, its been an extremely LONG day! 6 hours of training and 2 trips to the NICU, BUT I do have to say, talking to L and S was pretty theraputic for me! ( I use just the first letter of their name to respect privacy!) It helped me realized alot of MY feelings, let me share somethings I learned today at my class, and I got to meet a new amazing mom, and reconnect with a wonderful, amazing mom that I NEED to spend more time with :)

Tuesday, November 1, 2011

What is normal?

Ive been having a VERY hard day. I got up at 730 with Brielle and tried to put her Spio vest on. This vest is new. She just got it yesterday. Brielle has issues with her muscles so she sits very slouched, sits on her tailbone. I know Ive talked about it before, but anyway, she was fitted for a spio vest and got it yesterday. The guy who brought it out and put it on, made it look so damn easy! This morning, I tried to put it on Brielle. Did NOT go as easy as the day before! Im not sure if it was how Josh took it off, or if I just started off totally wrong. Not sure, but it sent me into a complete breakdown! Brielle did NOT want this thing on! And I cant say I blame her! So she keps wiggling and screaming and trying to get away from me. I still am not sure if its on her right. Actually, Im certain its not. Which sits not well with me, as its probably not helping then! So I let out a scream in frustration, which I dont do, and Brielle STOPPED. She looked at me, because moms never done that before. Then the tears came. And they didnt stop for hours later. She crawled over to me and said some jibberish, but sounded sincere. She put her hand on my shoulder and laid her head down, like she knew mom was frustrated, but wanted to tell me it was ok. I felt bad for Brielle. I felt bad that she is a preemie with issues. I felt that I failed her and Ayden. I couldnt keep them in long enough. Why didnt I just go to the doctor when I sensed something wrong??? Could that have changed things? I felt bad that Brielle has now be in this "contraption" for 6-12 months maybe L.O.N.G.E.R!! I felt like a failure because I couldnt get this damn body suit on her "correctly." Its not helping her if its not on right! I felt bad for loosing my cool in front of her. I felt bad for not being able to control my tears and let cool go. I try so hard to stay positive to keep her positive. To keep smiling so shes happy, but I guess I could no longer control it. I crumbled. In front of my daughter. The worst feeling ever! She felt it. She sensed it. She knew something wasnt right with mommy. I held her sooooo tight and just sobbed. I told her I love her and Im so glad shes here. But sometimes mommy just wishes life was simpler. Why did I have to lose Ayden? Why did I have to quit my job to care for a preemie? Because she wouldnt be where she is today, if I didnt! Why do I have fight SSI to get her benefits she deserves as a 24 weeker? Why do I have to fight insurance companies for synagis shots that will save her life? Why do I have to see 5 therapists, and 3 specialists?? Why cant we just see the "normal" pediatrician every 3 months like the "normal" child????????????????? WHY. DID. GOD. CHOOSE. US??? I want to know! Because I do not feel strong enough some days. I try my hardest to work with Brielle, keep up on her therapy. Go to her endless appointments. Keep up with nebulizer treatments twice daily. Regulate her with miralax! Watching for all the "signs" of new issues, and teaching her the "right" way to do things, crawl, stand, walk, instead of the way Brielle "thinks" she should. All while trying to just raise a child! Im starting to find peoples comments very hurtful. I hurt so much inside when people ask me how old she is and I reply "16 months" and they look at her funny. Or ask if shes walking and I say "No" and they look puzzled, which is my time to make a quick exit. It hurts. I like to think shes "PERFECT" in my eyes. Because she is. But when people question WHY she isnt doing certain things, and wonder why she isnt walking, talking, etc. It makes me realize that this is a slow process, but if they only knew how far she has come!

soooooo in the midst of all the tears, I had the post crescent newspaper coming today to take photographs of Brielle, myself, and Brielles occupational therapist, Teri. He came 15 minutes early, so I answered with my puffy eyes and put on my smile. Teri came and I had a concern about a sensory issue in her. Damn mother intuition!! Sometimes, I wish I WAS WRONG! I do so much research on her and things that "could" be wrong and I listen to other preemie moms talk, so I've heard ALOT about sensory issues. Brielle wont reach in a bowl and take crackers out without snapping her arm back, almost to think about it first. I REALLY noticed it last night as we took her trick or treating (she was a monkey!). People would tell her to go ahead and take some and she just wouldnt. So I brought it up to Teri today, went and got a bowl of candy, something she clearly would like, and she snapped that arm back. Teri quickly confirmed my fears. Not that this one is a HUGE deal, but after this mornings melt down, I felt it was one more blow. I used to feel like she was doing SO amazing and everytime Birth to 3 came, they contemplated on lessening the amount they came to see her, and now they are upping the amount of times they come because of the amount of issues coming up with her sitting, the clicking, the sensory issues. UGH! I just feel like its all crumbling beneath me. I thank god EVERYDAY she is here. Things could be worse, and I dont want people to think Im being selfish, but it can really drag a person down! A good friend of mine, who I swear Ayden knew I needed her so he pushed her to me! But I texted her today when I was having a melt down because she had a daughter who had a lot of complications as well. She knows exactly how hard it can be. But then I felt extremely GUILTY for contacting her! She lost Kylee in March. What gives me the RIGHT to bitch to her? To cry to her? I did, because I knew she understands me! That she knows its "Normal." and she was a great friend to listen! THANK YOU KAREN! Others just say to me "Just be glad she here, you knew the day she was born there would be problems" It.does.not.matter. You dont want the problems. I dont wish this on anyone. Raising a preemie is not easy! I knew it wouldnt be! But its not at all what I had imagined! But when I hear her giggling like she is right now, it brings me back to reality! This is my life. Embrace it! Shes so full of love. Shes so happy. She doesnt know any different. To her its "NORMAL"

Wednesday, October 26, 2011


Yesterday we had Physical Therapy with Mrs. Lisa. We were showing off Brielles mad skills of climbing the stairs! She got up 2 steps and Lisa said "Hmm Not good did you hear that?" I asked her what and she said her left hip is clicking more than normal and alot more than it should be. She asked me to call the Dr while she was still there to set up an xray of her hip. She was afraid it was dislocated or she had hip displasia. YIKES. I got on the phone right away and of course, my AWESOME pediatrician, Dr. Krainik, got us in an hour and 45 min later! Xray proved everything was fine. I have mixed emotions about this, because now what is the problem! So now we have an appointment with the CP center in Depere with a pediatric rehab doctor. Not until Nov 15 tho! I hate the waiting game. The unknown. While Bri was climbing the 2 steps her hip clicked 5 times on the left and 2 on the right. So it is a bilateral clicking. Just finding out WHY shes clicking in the trick now! This kiddo never wants to have an uneventful week! I tell ya!!!

Play Date!

On our way to North Dakota, we were driving past Mineapolis, MN when it hit me that two of my lovely pProm "sisters", whos water broke around the same time as mine that I met on a support group and have kept in contact with, Lived in MN! (wow that was a run on sentence! lol) Anywho, I didnt pack much as we were frantically running out the door, but I thought, what the hell! See if they are around and see if we can meet up somewhere! They were both available! So we planned a meeting at the Mall of America! Aimee Tjader has 13 month old, Lila! Jessica Gessner lost her sweet Madeline. It was my first time at the Mall of America, as well as Brielles of course. It was SO nice to be able to meet these two ladies who I have had deep conversations for over a year! It was nice to get my arms around them both! Lilas smiles are contagious! Aimee and Jess.....I could write PAGES upon PAGES on how great those two are!!! It was amazing to be able to take alittle detour to see them!!!

Life Changing

When we found out we were expecting twins....Our life changed
When my water broke....Our life Changed
When Aydens heart stopped....Our life changed
When Brielle was born 16 weeks early...our life changed
When Brielle came home....Our life Changed
When Brielle stopped breathing....Our life changed
When my father in law had a stroke...Our life changed

It never seems to amazing how life changing a small or large event in life can change your life, your thoughts, your ways! Friday I got a call at work about 8:30am that my father in law had a stroke. He was over 8 hours away in North Dakota hunting with his 20 year old son, Chase. It was chases birthday! What a great way to spend your birthday! Hunting with your dad! Then things went O so wrong. Rodgers started acting funny and Chase knew something was wrong. Long story short...Rodger suffered a stroke. A clot on the left side of his brain. Also one on his artifical heart valve. We hopped in the car and headed the L-O-N-G 8 hour drive to get there as fast as we could! I had a sitter alll lined up for Brielle but freaked as soon as I hung up the phone. Anxiety of Rodger and then being 8 hours away from Brielle, this would be her FIRST night away from me!! I have never spent more than 9 hours away from Brielle!! So We ended up taking her. I was kind of nervous! But she did AMAZING!!! No fits! Minimal whining! And lots of naps! We got to hospital and got to see Rodger. Boy! It was tough! When your so used to seeing someone that NEVER slows down! Never wants to "Stop"! Now laying there. Not knowing what is going to happen! We know ALL to well being in the hospital, they tell you all the "This can happen, this may never happen" Its so scary! But we also believe in MIRACLES thanks to Miss Brielle. I DO believe a miracle is happening in Rodger! Chase said the ER said he would never use his left side to its full potential, he has almost full strength back! His speech is coming back! Hes up dancing with nurses! Hes doing laps around the 4th floor! Its AMAZING! Didnt expect anything less tho! :)

But it made us all stop and think of how quickly life changes. Your life can be so normal one day and completely turned upside down the next day. My brother in law Mike talked to Rodger at Scheels just a few days before he left of ND. Mike was stunned at how he was talking to him, having a "normal" converstation one day and then 3 days later gets this phone call. My dad is one year younger than Rodger. He has changed his ways of eating, getting his cholesterol down, blood pressure down, etc. I have NEVER heard my dad say he "is not ready to go yet" That hit me pretty hard. My biggest fear in life is death. I dont do well with it. I dont deal well with being able to NEVER talk to them, see them again, hug them again. It freaks me right the hell out. My biggest fear is losing my parents. Im in full fledge bawling session just typing this. I can not imagine how Josh, Chase, Troy felt as that phone call came in. How did Cindy feel as a wife? Ugh I just cant peice it together. Its a phone call NO.ONE. Wants to get! It sure does make you stop and reevaluate life! For Josh and I, we have already lived a life that Family comes first! We try to make it to every invite we get. To me, Laundry can wait til tomorrow, Dishes will be there when I get home. Vaccuming will still be there. My mom, dad, sister, neice, nephew, grandma, grandpa, in-laws, MIGHT.NOT.BE there tomorrow!! You never know when your numbers up. I dont know when mine is up. Everyone doesnt live to be 90. Cherish the time you have TODAY. Dance in the life you have been given TODAY. Let the sunshine shine thru TOMORROW, if your given a tomorrow. Live everyday like its your last!

Saturday, October 15, 2011

Pregnancy and infant loss rememberance day

October 15th is Pregnancy & Infant Loss Remembrance Day. 1 in 4 women lose a baby to miscarriage, stillbirth or infant loss. EVERYDAY 70 babies in the US will be born silent. 26,000 babies each year. At 7pm in each time zone candles will be lit creating a wave a light in memory of these children. Sadly, the grief of child loss far outlasts the sympathy. Parents are silenced by society deeming this subject as taboo. Today we unite in grief & help break the silence...Gone from our arms but never our hearts ♥

Not a day goes by that I dont think of my sweet Ayden. I often look at Brielle and wonder if he would have the same adorable laugh or smile. Would he have curly hair like Brielle? Would he be walking or crawling? Would he have a spunky personality too? What would he be like? What would he look like? What would it feel like to hug him? Kiss him? FEEL HIM??? To this day, seeing girl/boy twins breaks my heart. I should have pink and blue. Two high chairs. Two car seats. TWO CHILDREN! A part of me is missing.

While talking to my bestie today, she brought up how she didnt like that I missed out on my pregnancy. It took me so long to get pregnant. We took a fertiltiy pill, got pregnant, didnt have the perfect pregnancy, never got to feel them move, never got to experience maternity clothes, never got my baby shower showing off the big twin belly. I lost out on alot of normal things. I never made it to my 3rd trimester. I gave birth in my 2nd trimester. Thats not normal. I never got to bond with my babies fully. I went into emergency surgery and came out with one baby. There should have been two. Nothing about my pregnancy was normal. But then I asked her "WHAT IS NORMAL?" Ive never had a normal healthy pregnancy so I dont know normal. Will I ever know normal? Im not sure.

I found this webpage and submitted Aydens name. He is the 17th baby to be read if you care to listen to some or all of the babys lost on this page.


This is a personal list of babies that I know in some way or another that have been lost. As I look at this list, it breaks my heart to see how many babies are gone! But I find comfort in knowing that I.am.not.alone. Ayden is not alone. He had a whole baseball team up in heaven playing with him. They are all carefree and not in pain or surffering no longer. That is the only thing that I can take any comfort in losing Ayden. Here is my tribute to the babys lost.

Baby Jenna Debruler
Baby Memorie Peterson
Baby Troy Jr. Peterson
Baby Carlos Ponce
Baby Orson Griffiths
Baby Madeline Gessner
Baby Matilda Cepkova
Baby Collin Lipke
Baby Matthew Beach
Baby Amelia Lebert
Baby Zachary Walton
Baby Keegan Jahnke
Baby Mason and Hunter Dierkes
Baby Eli Bevers

Please forgive me if I have forgotten anyone!

Sunday, October 9, 2011

Brielle has other plans!

Last tuesday we had therapy for Little Miss and of course she had her own plans. Although, I am starting to like her own plans :) Physical Therapy came at 830 to "loosen" her up before Occupational came at 9 to kinesio tape her. Right away we showed Miss Lisa how Miss Brielle has mastered her walking toy! She was pretty impressed! She was here 2 weeks prior and Brielle wanted nothing to do with it. Now shes a crusing diva! She stretched her hamstrings and said those felt pretty loose! (Yaya mom and dads work pays off again)She said she has changed in 2 weeks and she just cant figure it out!! GREAT NEWS! She did point out that maybe Brielle is the type of child that will have some asymetry as she is "learning" to do a new skill. Ex. Walking with her walker, walking unassisted, scaling furniture, ect. Which has seemed to be IT thru out her short little life. The thumb for example was stiff and not working and then she crawled a few weeks later and bipassed a thumb splint!!
Then Miss Terri comes from OT and she brought another OT and a student with her since she wasnt really sure what to do with Brielle. Miss Terri said that she was stumped and felt like a liar because Brielle was looking much better than she did 2 weeks ago! I confirmed that she was indeed not this well (As in terms of her back muscles we are talking) so the other OT specialist didnt think she was crazy! Dang, I shoulda played with it :P HAHA So needless to say, they did not tape her back! PT is coming every 2 weeks now vs. once a month. There is still a possibility she could slide back and need tape, but as of now they will just watch her and keep the tape in their car (sometimes if they "threaten" Brielle she shapes up!). OT is however nervous that if we cant get Brielles "slouching" under control that there will be skin break down in her back where those bones stick out from all the pressure. So they suggested that we find or make or create some sort of stool or chair with out a back on it that she sits with her feet flat on the floor. This way she has to lean forward more to keep her feet flat to balance. They demonstarted with them sitting "indian style" and setting Brielle on their ankles with her feet flat. It worked great! So I went to walmart and found a shoe box plastic "tote" that is perfect size for her for $1! After I put her on several boxes in the aisle and people thought I was crazy, but hey this mama got the job done. She has been doing better. In the last 3 weeks she started slouching sooooo bad that she would just topple over and roll from a sitting position because she cant balance. Or she would try to pull her leg up and couldnt. It CRUSHED ME! That was the first time in along time that something Brielle did crushed me. Ive tried to stay pretty positive thru everything from the day my water broke. Therapy asked me what my biggest concern was and what I felt needed fixin now, and it was the sitting. I cant handle watching it. She used to sit so nice and straight and in a matter of time she went to slouching badly to toppling right over. This needs to be fixed. This is my determination over the next few weeks.

Thursday, September 22, 2011

Nurse Teri!

Tonight was orientation for the NICU parent host program that I am volunteering at our NICU Brielle was in for 98 days! I was nervous about going back in the "rooms." Nervous about what I would say to the parents. My Friend (Karen, I know you've heard me talk about her before, Kyless mom!) are both volunteering! So her and I were sitting outside the pediatric floor having some nice girl talk. Joan, one of the retired nicu nurses, asked if Nurse Teri was up there yet. I asked her if she was working, and she said she believed so! I told her to send her up if she was working! I had not seen Teri since we left! For those of you that dont remember, Teri called me the night of Aydens passing to tell us she was thinking of us, and Happy Birthday to Brielle! She is soooo sweet! There are SO many sweet nurses up there! This is another "perk" to the NICU parent host program! I get to see my "family" AKA past nurses, doctors, respiratory therapists. This I am prety excited about! These ladies (Teri) Has seen me cry when I didnt want to go to my baby showers because I felt like I shouldnt have "fun" and needed to be with my baby not being showered, they listened to my concerns, experienced the highs and lows of our stay! Some of the nurses have spent more time in the NICU with us than some of our family spends with us. (Not that its bad, thats just how it is!) Alot of these nurses have such special places in our hearts that I dont think they know they do. I can ramble off atleast 10 nurses who have touched my life in such ways!

(P.s) Teri or Terri? I never know if your one or two Rs hehe! SORRY! You know who you are!! Cuz you said you still read :) :) :X :X

Tuesday, September 20, 2011

1st Birthday (adjusted)

Funny story before I get onto the juice! I was laying on the floor and Brielle was tackling me and "getting me." She tooted, and I looked at her and said "BRIELLE, did you toot???" She laughed, so I laughed. Well then she tooted again and I laughed harder. She started trying REALLY hard to toot to get mom and dad to laugh. It was hilarious!! She learned what got a rise out of mom and dad so she tried hard to do it over and over to get that reaction she likes. (Good learning skill, not so much with the farts!) Now not that we think its cute when she toots, it was just the inital when I asked her and she giggled, like YUP Mom, I know! hehe

Her new words are Dog and yuck! I love it! She LOVES to give kisses! Open mouthed and tongue and all.... She has learned to break out of my homemade baby gate of a toy chest and her "lazy boy". Shes too damn smart for her own good! She is sleeping thru the night and has 8 teeth now!! She eats pretty much any table food we present to her. We are weaning her off the bottle and to the sipper cup! hmmm lets see what else...O she says Bubba now (in regards to her bottle), ga ga ga, mama, duh, duh, Still not waving, but its coming. She is pulling up on EVERYTHING! and scaling furniture! Still not brave enough to let go, but mamas not pushing that or walking! Shes growing up SO Fast!! I have NO clue where these last 15 months have gone! :/

So Im always a day behind! Got to get more on top of this! Yesterday was Brielles original due date! So heres some stats.....

original due date: September 19, 2010
Actual birth date: June 1, 2010
Weeks premature: 16 weeks (Born at 24 weeks 2 days)
Birth weight: 1 lbs 6.6oz 12" long
Weight at 1 year old adjusted: 18lbs 13oz 26.75" long
98 days in the NICU
Has been home 378 days to date!!!!

We had Brielles 15 month appointment yesterday as well. He said she is a miracle superstar! Of course she is!!

We also had occupational therapy yesterday. I was concerned as she will not point with her left finger but constantly points with her right. She also slouches ALOT while sitting and while sitting her left knee and or foot are in the air slightly. So I questioned the therapist. She then took off Brielles shirt to get a clear look at her back muscles. She found that Brielle is not using all of her back muscles. When you look at your back, you have the two bones (I call them shoulder bones) and they should both equally "glide" down in a half moon to your side. Well Brielles right looks perfect, her left sticks out. Also she found that her neck muscles are also not being used properly. Her left side is much different in size than her right. The muscles that we use to shrug our shoulders, she can not do that. Upon reviewing her even further after this "diagnosis", she had her bang two balls together. A child should bang two toys together by bringing both hands together in the midline and bang the toys. Brielle leaves her left hand at her side and brings the right hand to the left hand without moving her left. All of our concern is on her left. Since Brielle has PVL on her right, it causes Cerebal Palsy on her left side. So of course all of this "left hand, left leg, left muscles etc etc." is putting up a red flag.

SO this is exactly what was written on her "progress" sheet from the OT. "Mom mentioned she is not pointing with her left. Upon evaluating her left arm, left traps are asymmetrical as are left rhomboids. Tight left supination/pronation. Uses left hand actively and grasps/releases objects. Holds left thumb against side of hand but not tight. Open palm when crawling."

So I questioned if this is a CP "thing" and she said yes :/ The older she gets the clearer her CP is going to start showing thru. But as OT stated, Brielle is young enough and we are watching her like a hawk and that will benefit us. Because we can correct as much as possible what needs to be corrected.

From here there a few things that we will try. First we are doing muscle exercises. We take her elbow in one hand and her wrist bones in another and turn her hand over without turning the elbow as well. As if we are turning her hand over to put something in it so to speak. Next we are putting an ace bandage on 3 fingers of her left hand leaving only her pointer finger and her thumb out so she can still finger grasp with the two to pick items up. While the ace bandage is on, we restrain her right arm as much as possible. If there is no improvement in that by Oct 4, she comes back and places Kinesio tape on Brielles back muscles. And then if that doesnt do anything, we will put a hard cast on her arm to restrain is so she HAS TO use her left arm more.

I am not getting too excited about all of this. Awhile back, we thought she would need thumb splints for her tightness in her thumbs and we worked really hard to loosen those, and it worked! Dodged the thumb splints. So it is what it is.

I feel extremely blessed to even have Brielle. She could have not made it in the NICU, I could have miscarried like my first pregnancy, or she could have passed with her brother. She has defeated quite a few odds already!! Having only a 39% chance for survival, I'd say she is a miracle. I could not ask for a more perfect little girl. She brings Josh and I such joy in our lives. She puts smiles on our faces every minute. She is the love of my life.

Friday, September 9, 2011

Just a year ago..........

A year ago Yesterday actually, was the year marker of the day Brielle stopped breathing and gave us all quite the scare. It is also the day that Jenny Echols, the 911 dispatcher, walked into our lives. She actually lives just down the road from my mom, so we have kept in touch this whole time. We actually got to see her Wednesday for an hour by chance! Wed. I had not even given it a thought that it would have been a year the next day to mention it to her. It is soooo crazy to me that this year has gone by this fast!! It seems like just yesterday I was laying in the hospital bed fighting to keep my babies in 20 more weeks. Even tho I only made it 4 weeks of the 20 weeks, I am in awe of how far we have come. This little girl amazes me daily! She has overcome almost every odd put in front of her. We were told alot of scary statistics when she was born (Even well before she was born) and we have a happy, healthy, 24 weeker. You could not tell she was a preemie if I didnt tell you. She is doing everything she should be doing for her adjusted age of almost a year. In 10 days (sept 19) would have been her original due date. Instead, the twins thought June 1 would be a good birthday!

Today, we are on our first family vacation as a family of 3. I could not be happier. She is so much fun and such a delight to have in our lives. Her smile lights up a room and lights up my life as well.

Friday, August 19, 2011


I am numb. I am crushed. I am hurt. I am torn. I am so very sorry. My cousin, Amanda, lost her 9.5 month old Wednesday to cardiomyopathy. Jenna had an enlarged heart. She was too sick to receive a heart transplant and she grew to weak to keep fighting. After a very strong 6 week fight she just could not fight no longer. My heart breaks for my cousin. 14 months ago, I was planning a funeral for my son (with tons of help from my dad). It was heartbreaking for us and we had never "met" Ayden. I never held him. Never felt him breathe. Never played with him. Never seen him smile or giggle. Amanda seen and heard and felt all of those things. I can not imagine how tough this is on her. She lives in Indiana and we are in Wisconsin. She is coming home Monday and I can not wait to hug her. I can not get her off my mind. I keep thinking how unfair it is. But in the same sense, Jenna is at peice. No more tubes and wires. No more struggling. O how I wish that sweet baby could have gotten a transplant and this ending was so different. Watching your child struggle for over 6 weeks and then have this ending is so unbearable. I have a friend, Karen McGlin, who lost her daughter in March to cancer. She is such a strong woman! She looks at things from the positive side. I dont know how she does it, but she puts me in my place so to speak. Stop thinking negative and start looking at the good of the outcome. Her and her daughter, Kylee, have left such a huge footprint in my life. I never got the pleasure of meeting Kylee, but if she was half the little girl her mom is, I know she would have been wonderful, amazing, caring, loving, and courgeous. I am blessed to have her in my life.

Sunday, August 14, 2011

NICU picnic

The end of May, I created a NICU group for all familes who have ever used the NICU Brielle was in. I have been struggling with the loss of Ayden and the preemie side of Brielle and having another baby. I felt it was important to me to have others around me how "get it." So I started a group on Facebook and it is currently up to 118 members and grows daily! Two moms who were also in the NICU that I have become friends with, Tracey and Nichole, helped me organize a NICU family picnic. The picnic was today! It was very successful! We had 140 people RSVP. We had "Care bears" that passed out tattoos and band aids that said stuff like "Stuck on a miracle." "I *heart* Dr. Debbie" (Since one of the Drs (debbie) came today) "Preemie proud" "Nurses rock" etc. We had 2 bouncy houses, tons of food and great conversation sharing our stories with others. We had a scrap booking table set up that was "Look at me now" themed. We asked each parent to bring a newborn nicu picture and a current picture and then we put them up on the wall so everyone could read the stories. Then we will put them in a book and donate to the NICU. It was alot of fun!! A few nurses even came! And of course, Dr. Debbie! :)

Tuesday, July 26, 2011

Break please?

Brielle has been crawling further and further day by day! Its so great! The baby proofing, not so much! Everytime I think everythings up and out of reach, she finds one more thing she isnt suppose to have! Like a bird seed!?! Where does she find this stuff!!! She says mama, MA, Mom, all the time. Josh is getting jealous and now tells her to say da da. I woke up this morning to her playin in her crib and saying "mom" on the baby moniotor. How freakin great is that?????? The weather here has been unbearable! Humid and stick and just plain hot! With Brielles chronic lung disease its hard to take her out for any period of time. She gets very wheezy and then we have to give her a breathing treatment of Albuterol. Brielle has started to shake her head (and whole body for that matter) "yes." Now Im not sure if she just likes to do it, or if shes actually trying to say yes, but its quite funny. I then shake my head no and she thinks its a hoot and giggles. O man, I could hear those giggles all day!!

Brielle was re-evaluated with Occupational, Physical, Speech, and early intervention last week. Basically they come in and set "goals" for her to reach over 6 months. They usually dont renew this early, but she reached all her previous goals before the 6 months :) Thats my girl! Early intervention actually will not see her anymore since she is doing so well! The other 3, I have requested to continue. I am SO afraid that I will miss something as time goes! Technically she is approved til she is 3, but we can decide to discontine earlied, increase or decrease how much they each come etc. She has proved everyone wrong since the gecko, but I still want the eyes to watch her. They also give me a lot of good tips and pointers and games to do with her that really get her going. I always say, "DOH mama! Why didnt I think of that!"

Tomorrow, if it doesnt rain! UGH! Brielle is in a childrens parade! We decorate her stroller and march downtown to a park where they have cake and activities for the kids to celebrate the 10th birthday of Childrens Hospital who played such a big part in our lives this past year!! I am pretty fricken excited!! I am dressing her up as my buttefly. Same as her birthday party, she was a little fragile caterpillar that emerged into a beautiful butterfly! I got a headband and made her little antennas, she has wings, I have flowers to go all over her stroller! Im pumped!! Please rain, GO AWAY!!

Break please for the Driessen Family (My maiden name). 1st, My cousin Amandas baby, Jenna, is 9 months old and ended up in the hospital mid June. Determined that she has a genetic heart condition and needs a heart transplant. She has endured more than any baby should ever have to go thru! Amanda is facing decisions no mom should have to face on her own! We are all hoping and praying that this sweet little girl gets put on the transplant list this week!!!

Next, my cousin Heidi is pregnant with twin girls. 26 weeks along and developed twin to twin tranfusion syndrome. One baby is taking all the nutrients from the other baby and if it continues the other baby will eventually die. She was scheduled to go to Ohio today to do the procedure, but she ended up going into labor yesterday morning. So she is in the hospital until she delivers. And boy do I know what that is like. No fun! The waiting game sucks! The unknown sucks! They took 4 liters of fluid off her stomach thru a amnio reduction and stopped the contractions!! Hoping she can keep those babies in much longer!!

My other cousin, Nicole, her boyfriend was involved in a head on crash Sunday night. He has 2 collapsed lungs and a head injury! Hes 21. Praying for a fast and easy recovery!

And finally, Brielle has had a temp as high as 102.9 since Saturday night. I took her to the Dr yesterday and she has inflammed tonsils. Strep came back negative. If she doesnt improve by Thursday or develops new symptoms back we go.

So yes, as the title of this blog says, we need a BREAK PLEASE in our family!!! Everything will turn out good because our family has such a great support team and we believe!! My family was such a HUGE part in my life when I was going thru my journey 15 months ago! Without their faith, love, compassion, support, and confindence, I dont know where we would be. Everyone was so great it was amazing. Prayers go along way! Our family will make it thru all of this!

Friday, July 15, 2011


Brielle is CRAWLING!! I got a call at work :( about 10am saying she crawled for the very first time!!! Boy o boy! Where has these last 13 months gone???? I feel like just yesterday she was hooked up to cords and wires and oxygen and monitors and I was trying so hard to vision life without all the "equipment." And now Im trying to figure out where that all went! Shes getting so big! Its wonderful considering her birth weight, but Im starting to miss my cuddly immobile baby!!

On another note, my neice, Johanna, that is 7 weeks ADJUSTED younger than Brielle started crawling today as well!! How cool is that??

Tuesday, July 5, 2011

Just an Update

Brielle is trying O so hard to crawl!! I thought she wouldnt, but all of the sudden she got this urge to try it out. She goes from sitting to the crawling position but then shes not too sure. But she is getting it! She rocks on her hands and knees. So we will see. And the most exciting (for me anyways) She started to say....MA Not a full mama but its a step in the right direction Right???

She has just started the 3rd stage foods. She just had lasagna. She loved it!! She still gets full really fast and eats more meals a day. Shes still a peanut with a small belly but thats okay! To date she is 18 pounds. She is a happy, opinionated, joyful little girl. Her laughter and smile brings such joy to my face everyday! There isnt a day that goes by that I dont say to myself "This is truly my little miracle! 2 days past the "viable" gestational age that the Drs would save her." TWO DAYS! 2. And doing incredibly well!!!

We went to fireworks last night. Before we went, I was feeding Brielle supper and I happened to tell her that we were going to go see fireworks tonight that went "BOOM" real loud. She giggled so loudly it was hilarious! I got it on video! I wish I could share videos on here. Im going to figure it out :)

Wednesday, June 22, 2011

Summer time

Yesterday we had speech thereapy. I am NOT at ALL concerned about her eating. She eats like a champ! She only has 2 bottom teeth, and shes eating chicken nuggets, crackers, cheese, baked beans, corn, mashed taters, manderin oranges, diced apples etc. Lisa (therapist) was over delighted she was eating so well. I was alittle worried, because Little Miss would rather feed herself than have mom and dad feed her, which only means, the second stage baby foods are diminishing. But Lisa reassured me that if she was eating enough table foods and she is still on formula til September, she is getting enough nutrition. And she explained that when babys get teeth, they want to chew and not eat the mush. Makes sense. And saves molla on baby food!

I was however concerned because Brielles early intervention teacher said she thought her speech was behind. Shes not saying mama da da na na etc yet. Lisa thought she was alittle behind, but NOT getting too concerned as Brielle is REALLY wanting to WALK! She will straighten her legs out so you can sit her down, she'd rather stand. She LOVES to walk holding our fingers. She is almost running holding our hands. Its pretty funny! I honestly dont think this child is going to crawl! But she has proved ALL Of us wrong at one point or another, so Im prepared if she would crawl. I hope she does crawl as its good developmentally, but we will see.

Lisa also explained that because Brielle is working so hard on Walking and she is so determined to GO GO GO, she may just be concentrating on the walking and not on talking. So for the time being, we have increased her speech therapy from 1x a month to 2x a month. She is not going to watch her eat anymore since we are pretty good on that, shes just going to focus on her actual speech and sounds.

Other than speech.....Brielle has one top tooth that JUST popped thru today! This tooth wasnt as easy as the last 2! She was incredibly whiny and fussy and cuddly! Which I was okay with the cuddles, because this child usually does not want to cuddle she just wants to go go go constantly its exhausting! She took 5 naps yesterday! And now I see why this morning! :) I am going to miss that gummy smile tho :/

Now that summer is here, I am having some anxietys I guess we could say. I feel like last summer was taken from me. I spent all of May in the hospital stuck in 4 walls and a bed. June, July, and August were spent by Brielles side in the NICU. We didnt get to do anything (which was fine by us, Bri took priority) but now I feel like I have to fit as much into my summer as humanly possible! Poor Josh lol. There are summer concerts every Thursday we have been going to, Bayfest, Seymour fair coming up, Farmers Markets, Chicken Fest, Fourth of July! YAY! I cant wait! This summer is by far better than last year, because I have my precious miracle on my hip!

Wednesday, June 8, 2011

1st Birthday Party Success!

Brielles first birthday party on Sunday was GREAT! Undescribable! We had about 50 close family and friends there! The weather was alittle Hot, but it didnt rain! Brielle had on a cute yellow sun dress with our theme for the party, butterfly, on her left shoulder. The bottom had flowers growing up. Her cake was a two tiered blue butterfly cake made by one of the sweetest friends, Candee Gumm. She got a 4 wheeler from mom and dad, a wagon from aunties, papa mike & Ginny, A little tykes bike from Great grandma and grandpa Peterson, A beach bag full of toys, treats, etc for the boat from Papa Rodger and Gma Cindy Eberly, A leash from uncle chase and more camo!, A Ayden wing that matches my necklace from Auntie Ema, Uncle Mike and Anthony and Johanna, Money to buy what she wants! Lots of clothes and toys, books! She is a VERY loved little girl!!! She woke up from a short 40 min nap at 11 when all her guests arrived and stayed awake til 4:30 when I put her down to nap. And she even fussed! She was VERy good! Never cried or fussed! Must have been on a sugar high from all the cake she ate!!

The theme I choose for her party was "Spread your wings and fly" Butterflys. The reason is I think of Brielle as my little caterpillar that was so little and fragile and then emerged into this beatiful little girl, much like a butterfly does. So "Spread your wings and fly" just came to me one day and I went with it. :)

Very Very Very pleased with how we celebrated her one year and everyone who came to celebrate with us! Thank you to all

Here are some Birthday Party pics!

Saturday, June 4, 2011

Aydens funeral

A year ago tomorrow was my sweet baby boys funeral. But this year we are celebrating Brielle turning "1". A year ago today, I was released from the hospital. After sitting on my couch again (believe me, after 4 weeks in a bed, thats a HUGE deal!), we went to "take a kid fishing." An event my dad is part of that takes 3-15 year old kids fishing at a pond. They have trophies for most fish, smallest, biggest, etc. Its fun!! After we stopped there, I got in the car and we drove to my sisters house. She had just bought their first house. I hadnt been a part of any of it since I was in the hospital. I seen pics on her phone that was all. I was sore as could be! Josh had been fishing with my then 3 year old nephew. As I watched him fish, my eyes filled with tears. My sweet boy was gone. Josh didnt have a boy to do this with! As Im in the car, all the emotions took over again. He asked what I was thinking (as he knew what was wrong) and I told him watching him with Anthony and now his boy is gone. His words were "I have Brielle. Dont worry, she will be fishing with me." Sure enough, today....His one year old was fishing with him. Brielle helped him reel in 2 fish but was pretty much done after that. It was a blast!!

Last year we were sitting in a church, giving Ayden the proper funeral. With about 30 of our close family. Our little girl in an incubator weighing alittle over a pound fighting for her life. Not knowing if we have to do this all over in a few weeks? months? DAYS? The unknown. The death of our sweet boy. It all weighed heavily on us. As I sit writing this, Josh and Brielle are on the floor tickling and laughing and screeching in excitement. I wish Ayden was here. I wish we both had a baby to "tickle". To hug. To cuddle. To LOVE. To kiss. To hold. But we dont. I am happy with what god has given me. But at the same time, I am mad he took my baby boy from me too soon. We never got to see his smile. His sweet face. His laugh. God took that from me too soon. But I will put on that happy face as I always do and pretend I am OK with it. But deep down, I am NOT O.K. With it. I want Ayden back. Brielle needs her twin. A bond that only twins have. She doesnt have. She wont ever know. The other day, we walked past Aydens urn and she whipped her head around and smiled. I stopped and went back to him where she puckered her lips and did her famous "oooo" I told her that was her brother, Ayden. I handed her the molds we have of his feet that my dad gold plated. She felt them. It was almost like she was saying Happy Birthday Ayden. I cant even type this without welling up with tears. It was like she knew he was there. Maybe she will always know her twin is with her?

I am forever grateful that my dad took all the funeral planning into his hands. I just couldnt do it. I didnt want to face that my baby was gone. Then I had to deal with my other living sweet baby fighting for her life. It was just all too much. My dad did everything from calling the funeral home, the cremation, the church service, invites...EVERYTHING was by my father. I can not express how much that means to me. I kept pushing it off, and he took it all into his hands. All I had to do was pick out the urn. It was pretty laid back and as easy as possible. Valley funeral home was awesome as well and picked up the creamation cost since its an infant. Kuddos to them as well. All in all, I can not believe its been a year already!!

911 Ceremony

So thursday night we had an awards ceremony for the 911 Dispatcher who took our call the scary night of September 9 when Brielle stopped breathinga after being home only 8 short days! Jeniffer Echols, our angel won an award after I wrote a letter applauding her for her calming nature to help us. It was very nice! We brought Brielle with us, and alot of people were looking at us, wonder why we would bring a baby to such a thing. Then after the sheriff read a paragraph of my letter, they all understood. Jeniffer has now become a part of our family. She is invited to all of Brielles birthdays and other events. We keep in contact and we love her!!!

Thursday, June 2, 2011

My little one year old!

Brielle is "1". How freakin exciting is that?!? Over a year ago, we didnt know what was in store for us when my water broke. Now looking back, I just am in awe at what we encountered, and where we are today. Brielle is gorgeous, full of life and smiles and laughter! She has started to clap! The night before her 1st birthday, we were at my moms having a cook out and she was sitting there clapping!!!!! Ive been working on this for sometime, since I am trying to get her to do sign language. I swear a few times lately, she has signed "Eat." How great is that!! And the little turd bit me today! She guided my finger ever so swiftly in her mouth and bit down. Then when I screamed "OUCHIE" she giggled. How great! We watched her first ever bath yesterday. It was when she was 1 month 10 days old. She fit in this tiny little pink bucket the hospital used for breast feeding parts etc. She was soooo little! Intubated yet, so no sounds from her. Her little arms flying all over the place, since she didnt know self containment yet. She nestled so nicely in Nurse Kathys hand like a little baby kitten. The small wash cloth was big enough to be her towel. I had to use one finger to wash her since my hand would do her whole body at once and over stimulate her. NOW bath time.......She sits on the bottom of the tub with alittle water in the bath tub and plays with toys. My whole hand washes her. We giggle, she does her famous "OOOO" with puckered lips. She splashes her hands in the water and looks at us and smiles. She loves to try to grab the running water from the faucet. O how bath time has sure changed. O how our life has changed in just a year!! And I'm loving every minute of it!!

Last night, we released a balloon to Ayden at 8:52pm. The time they were both born, just a short year ago. We all wrote a message. Mine saying "Happy 1st birthday my sweet baby boy. I hope you are having lots of cake in heaven. Love you forever, Mommy."

Tuesday, May 31, 2011

No heartbeat

A year ago today, we were in our hospital room that I had been confined to for 3 weeks 2 days and counting! Josh had the day off as it was memorial day. THANK THE LORD! The nurse came in to do the everyday routine heartbeat checks and temperature and blood pressure checks on me. Then it was time for my 2nd steroid shot to mature these kiddos lungs. Little did we know, our world would come crashing down. Aydens heartbeat had been becoming harder and harder to find since his little body was crushed inside me with little water. He was often burrowed down in the corner. The nurse tried and tried and tried with no luck. I still didnt panic. She went to get another nurse. No luck. Panic starting to get there.....Another nurse came in, a nurse that was called in just a few days prior when they couldnt find Ayden, but she found him almost right away. I was excited to see her. I thought, shes a veteran nurse, she will find him. She couldnt. I could see the concern coming over the nurses faces at this point. Josh grabbed the doppler as they went to call the Dr. Josh desperately tried to find Aydens heartbeat with no luck. The on call doctor came in wheeling in an ultrasound machine. He popped on the machine and Ayden wasnt there at all. Brielle was cruising around kicking like crazy as normal (and still to this day she hasnt stopped). Panic really set in at this point! What do you mean he isnt there? Where did he go? He was there yesterday???? WHAT DO YOU MEAN? He explained that he was either hiding where we couldnt see him (Ya, ok...NOT) or he was ready to come and he was in the birth canal. WHATTTT??? No its not time. Im not ready! All the feelings came back from the night my water broke! Its too early! too soon! they are too little! I. AM. NOT. READY. He called ultrasound to come up and try. an hour and they werent there yet. I was going stir crazy!! there was nothing I could do. The nurse came in and I told her I needed to know NOW! not in 10 min. NOW! I had never been demanding the whole stay, but this was driving me mental! She made a call and they came right away. The screen popped up and there were my two babies. Brielle on the left flying around the screen and to her right lay my sweet boy Ayden. Still as can be and no flickering heartbeat. Nothing needed to be said. I knew. The nurse grabbed my foot and left the room. Josh and I lost it. We had done all we could do. In was in gods hands. But what did I do wrong? Did I not lay still enough? Did I not drink enough water? Was I wishing I could be out of that bed too much and god answered my prayers? What went wrong? Why did god have to take Ayden? But wait..Aydens gone, whats going to happen to Brielle???? I had a flood of questions! Noone had answers! Noone could tell me what would happen next. My OB/GYN came in and threw a few options at us, that not even her could decide was best. It was at that point that I dont think they encountered this situation that often. The doctors had a "conference" and all threw there ideas out there and it was decided it was best to let nature take its course. Of course it was best to let Brielle in utero as long as humanly possible. For how long that would be was the question. How much longer would my body tolerate all this stress. The answer was not very long!

That day Josh and I cried and composed ourselfs enough to dial the phone. We called our parents to tell them our unfortunate news. Of course they all came up. We ordered pizza and tried to stay calm and positive as we still had Brielle to think about and to fight on for. Easier said than done! Out of nowhere I would just loose it and cry. What did anyone expect? The nurses informed me that I could take my first shower that day after 3 weeks 2 days of sponge baths. I instantly kicked everyone out and stood in the shower!! Thats about all I remember from that day.

Tuesday, the next day (June 1) Josh had to go back to work. I needed him to save all his vacation for whatever would happen next. We had no clue how much longer I would be in the hospital. How much longer my body would "allow" Brielle to stay in. My sister came up to keep me company and my mind off of the situation. I had ALOT of pain that day. I just thought my body was giving out since I had had lots of back pain and leg pain etc just from never getting out of bed for 3 weeks. I had never made it to a birthing class, never been in labor before, I had no clue what to look for. About Noon, My sister thought I was in labor. I told her she was crazy. Basically because the truth was I did not want to be in labor. I had 16 weeks to go yet! I told Josh when he checked on me that I was having pain, but nothing alarming yet. The nurses gave me heating pad and ice but nothing took the pains away. They hooked me up to the contraction machine and I was having a few here and there. Around 6pm the pains were so steady and painful I was moaning I hurt so bad. Because Brielle was so small, she could fly around in her sac and escape the monitors so it was reallly hard to get an accurate reading. Plus when I was in pain, I wasnt sitting still!!! My nurses kept coming in more and more frequently and at about 7:30 they said my contractions were about 3 min apart and I had begun to bleed possibly from Aydens sac tearing away from the wall. I also had a foul smell, probably from his body decomposing. My doctor was there by 8pm and said I was going for an emergency C-Section. I lost it! I kept telling Josh and my mom it was too early! It was too soon! But I didnt have a choice in the matter. My life was at risk for infection and Brielle wouldnt make it if they didnt take her. Who says she WILL make it even IF You take her right now?????????? It didnt matter, the decision was made, and it was a STAT C-SECTION. Josh was told he couldnt be in the room, which didnt make him happy. He had two babies and his wife being taken away from him and he couldnt do anything to help us. From what I was told, he was a basket case. He would pace the hall with his hands on his head, just waiting. Every person that came out of the OR room he would ask to be let in. When I was being wheeled out, I was bawling my eyes out, shaking like a leaf as I had no clue what was going to happen. My sister was crying so hard I thought she was going to collapse. She was 6 months preggo and didnt need this stress!!! Our parents were all there, just watching. Nothing anyone could do but pray!

I was wheeled into this stark white OR room. Something straight outta the fricken movies!!! I was shaking so bad they were trying to calm me down, but there was no calming! Trying to get the catheter in and I remember yelling at them. The "Good drug" guy said, should we just put you out, and I remember screaming "YES" to him. And that was it. The next thing I remember is my nurse, Heather Epley (the same nurse that admitted me the night my water broke, delivered my babies) saying my name over and over that it was time to wake up. I didnt want to! I asked her right away how she was. And she said "Beautiful 1lbs 6.60z baby. Shes doing great." Thats all I needed, Back to sleep! She wouldnt let me tho! They were all told that Brielle would be wheeled past them in an incubator and they would only see alittle glimpse of her. Brielle was doing so well that they stopped for a minute to show my family. She was intubated at 7 minutes of life. He Apgar were 4 at a min and 7 at 5 minutes. I was so wore out from the drugs that I didnt get to see Brielle til the next afternoon. This part REALLY bugs me, but what was I to do? It bugs me that our family got to see my baby before I did. Josh took in 3 at a time to see her after she was born and stabile. While I lay there too drugged up to go and in too much pain to. I was shown pictures, but its not the same. I fought so hard for these babies and it took me almost 17 hours to go see my baby. A normal mother gets to see her baby 5 seconds after they are born. I got robbed. I never got the big belly. I never got the big belly shower. I never got to wear maternity clothes. Never got to feel hiccups or kicks. I am grateful for everything I have today, but I still think about how differently everything SHOULD have been!

Tomorrow is actually Brielles 1st birthday at 8:52pm she was born! But I didnt know if I'd have time, so I posted her birth on here. Sunday 6/5 we have a huge party planned with family and friends. I am so excited I cant wait! A year ago today I didnt know if Brielle would make it. Alittle over a year, I didnt know if both of my babies would make it. Brielle is striving and a miracle each and every day. She amazes me daily with new noises, faces, babbling, movements, etc. I love that girl more than words can say. I miss my sweet Ayden more than anything. I wish he could be here with us today, but thats not the cards that were dealt to us. I have to put on my big girl panties and own up to it. I did what I could do and I cant continue to beat myself up over it! Hes gone. I wish I had a different ending to my story, but I dont. This is my life now. And Im quite happy.

Yesterday a sweet NICU nurse, Kathy, was in my work and we had a GREAT chat!! Last night another NICU nurse, Terri, Gave me a call to say she was thinking of all of us today. AWEEEEEEEEEE I am just in AWE how these nurses have become a part of our family and are so freaking sweet! I miss them! I dont miss leaving my baby with them daily, but I miss them! The therarpy sessions, the laughs, the crys, the reality checks! How nice of them to keep us in mind!!!

P.S. Ive gotten some wonderful comments lately! Thank you! I'm glad people are still reading the blog! I often wondered! To me, Its theraputic! I know so many people from all over the world have been following! I know I follow quite a few blogs and still wonder how they kids are doing daily! So I will continue for quite some time. Maybe even the next pregnancy and all its stressed I will have to make it to 24 weeks etc! Also, Ive gotten quite a few Anonymous comments and Im wondering who you are...... Where your from etc! If you want to remain anonymous thats great too! Or my email is a_jpeterson@yahoo.com and Id love to hear from you!

((Sorry for the novel))

Thursday, May 26, 2011

Still baking last year....

A Year ago, I was still baking my twins in the Hospital. Staring at the same 4 walls. Looking out the same window and bridge. Dreaming of all the things I would normally be doing, but knowing I had a different task at hand. I had to keep my babies in as long. as. possible. Ha! Easier said than done. Tuesday marks the 1 year that we did our routine 3x a day heartbeat checks and couldnt find Aydens. My anxiety isnt as high and I had anticipated it to be. I think because I was so hyped up for May 7, when my water broke, to be so terrible, and I managed. Sadly, my boy is gone. There is nothing I, Josh, Drs, nurses, ANYONE can do to bring him back. Joyfully I have my little Miss. She is a hoot and I thank Ayden everyday for her!

Some of the things little miss is up to now-a-days!

Biting! O yes!! Brielle has 2 bottom teeth and she is a biting fool! She bit Josh the other day! hehe pretty funny if you ask me! Today she bit my toe, not so funny!!

Getting into EVERYTHING! She will roll towards every and any cord in plain view!

She loves to pull my hair and rip off my glasses. She even threw them a few weeks ago and broke them!

She has just started a fake cry yesterday. Its hilarious!!!! It doesnt even sound like a cry!!! (I really want to learn how to download videos on here!!)

She learned Tuesday how to move her walker!! She loves to go down the driveway....Up not so much yet! :)

Sitting ALL BY HERSELF! Shes doing amazing! No more drunken sailor or tipping over.

Gives kisses and hugs! Open mouth and occasional tongue, but HEY Ill take them!

I tell her to give me her hands and she grabs mine and pulls herself to a stand! Loves to stand big and tall!!

Holding her own bottle (most of the time! She still likes to be a princess!)

Chowing down solids like a champ! I havent had anything this kid doesnt like yet! She eats watermelon, peas, green beans, squash, sweet taters, nanners, mashed potatoes! & she loves her gerber puffs!! She takes them off her tray & feeds herself!

Shes a whoppng 16 lbs 3 oz! 25.5" long. Her 7 mo old cousin is 16 lbs! hehe little fart!

She loves to play in her swing outside!

She loves to talk on the phone!

She is obsessed with ice cream & del monte fruit pops! She throws a fit if you dont feed her fast enough or its all gone!

She loves her puppies! And they let her dig in their eyes and ears and pull at their hair!

She has the most gorgeous smile! Her giggle is adorable!

We recently just got Brielles 1 year pictures done, SO I will leave you with those :)

Monday, May 16, 2011

Just a year ago!

Wowzers did this year fly by!!! I can not believe a year ago today I have been in the hospital 9 days holding my babies in. I can not believe in less than a month my 24 weeker is going to be a one year old!! She has come such a looong way. I am more than happy with everything she has overcome.

Over a year ago....We had our long growth ultrasound May 6. We decided to invite our two mothers as a mothers day gift to see their grandbabies in action. They both loved it! As did we!! That night I didnt feel well. I had alot of cramps but the u/s tech was pushing on me pretty hard so I just thought that was why. I went to bed right after dinner. I woke up around 2am. I sat up and was extremely dizzy!! I felt like I had vertigo. It started to go away so I got up to go to the bathroom. Our bathroom is not far from our room, and half way to the bathroom a gush of water fell over my wood floor. My first thought, was, you dumbass you pissed your pants!! I went to the toilet to clean myself and got a towel to clean the floor. As I bent down to wipe it up another gush. I immediately starting crying and screaming for Josh. Josh, waking from a dead sleep to his wife crying and screaming, came running to me. I told him to grab my phone and dial my doctor. He still didnt know what was happening. I was still trying to gather what the hell was happening myself. I was only 20 weeks 5 days. NOWAY this could be my waters breaking! Josh dialed my doctor as I stood there with wet pants. I coulnt talk. I could just cry. My doctor happened to be on call and she called us back immediately. She asked us if it smelled like pee or nothing. I said nothing. She told us we needed to get to labor and delivery immediately and she would meet us there. WHAT? What do you mean? LABOR and DELIVERY? I cant have these babies right now! They arent ready! Im not ready! They wont survive! They wont make it! Am I loosing my babies tonight? What is going to happen? I threw on sweat pants and socks and away we went. I did not know what this meant. I bawled the whole way to the hospital as Josh made phone calls to our parents. There was nothing they could do as well, but we wanted them to know since we didnt know what this meant! We got to the ER and they took us straight to labor and delivery. WHY are they taking me there???? I cant delivery! Too soon!! I went to the bathroom to get changed into my gown and saw blood in my undies. I started to sob in the bathroom. I knew blood wasnt a good sign! I came out and got in the bed and told Josh this was it. We are losing the twins. He tried to stay positive, even tho I could tell in his face he knew it wasnt good. My nurse, Heather Epley, came in to do an amniotic fluid test to see if indeed my waters broke. I already knew the answer why even do the test! She didnt have to say anything, I knew. What I didnt know was what this meant for me. For my babies. We just had a miscarriage in November. Now its May and we are losing 2 more??? Why is god putting up thru this!! What did we do to deserve this!! She came in with an IV machine. She started me on the IV to ward of possible infection in me and Aydens broken water bag. She said I would be on the IV for 3 days. I said "O so I'm here 3 days?" I didnt know I was even staying the night! She said the dreaded words "O hunny! You are here til these babies come." WHAT DO YOU MEAN! I have 20 more weeks before these babies come! Even tho, in my heart I knew I wasnt going to last that long. I am a florist, it was mothers day. I worried about work, because thats my nature. I think I worried more about my assistant, Kelly. How was she going to cope without me? We didnt have a choice. I felt horrible. Every emotion was coming over me! It was about 4am now and my doctor came in to check my cervix and make sure I wasnt in labor. Thank god I wasnt and everything was shut. She confirmed that I had bacteria Vaginitis. The infection caused me to Pprom. WHAT? This is a dance that high school students go to. I make them corsages! What the hell is Pprom? She explained its Premature rupture of membranes. Early water breaking. WHY ME! Again, feelings came over me. I couldnt stop crying. I just wanted to give up at that point. I didnt know what this whole situation meant, and what would be the outcome! I am a person that has everything planned out and wants to know! I didnt know. My nurses and doctors didnt know. My doctors explained to me that being 20 weeks, there was nothing they go do to save my babies until May 30. (It was only May 7) They asked us to terminate. The risk of infection could kill Ayden and Myself. There was no discussing or talking with Josh, It was NO. No we would not! There is two beating heartbeats and we will continue until we no longer can. My mom, Joshs mom, My sister, my grandma, and my dad all showed up. There was nothing anyone could do. It was a waiting process at this point! I was in a labor and delivery bed and it was the most uncomfortable thing EVER!! My mom eventually bitched enough and got me in a nice big comfy bed! Hey! If I was going to be there for awhile, I want comfort! We got transferred out of the post op delivery room to a smaller room, which sucked because we both have such huge families and there just wasnt enough room. And so began the fight of my life to keep my babies incubated for 20 more weeks!!! I think I can, I think I can, I think I can......