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!!!!!

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!

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! :)

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

Therapy!

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 :)

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"