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Tuesday, December 4, 2012

Whats Normal?

In the past 2 1/2 years, I found myself wondering what a "normal" pregnancy would be like. To show up to my baby shower with a big belly, a baby inside. Not having my shower after baby was here for 2 months, because we didnt know if she would survive. I wondered what it would be like to have the "normal" doctor appointments to a pediatrician at 2 weeks, 2 months, 4 months and so on. Instead we have a team of 10 different doctors and therapists and specialists looking after one child. I wondered what it would be like to wear maternity clothes. To take a baby HOME with YOU from the hospital. I got that chance 2 months ago. It was perfect! She is healthy! She is 11lbs 11oz (57%). She came home with us. She has has no problems! Then out of the blue, Josh questioned her always looking to the left. I hadnt seen it. Perhaps Im too caught up in the everyday tasks I have. But I told him he was crazy. I also feel I did not want to pick her apart as we have had to do to Brielle. I just wanted her to be "Normal". Josh questioned Brielles physical therapist, Lisa, at Brielles therapy christmas party on Saturday. Lisa said she would evaluate Tayvah when she came today. Lisa came today, and evaluated Tayvah and she has torticolis. It is where the head is tipped to one side and the chin to the other. I asked her when this usually shows its true colors and she said usually around 2 months. She was 2 months on Sunday.

I know that torticolis is not a HUGE deal. But, as another special needs mom said to me, Just because it is "fixable" does not mean I dont have the right to be sad, angry, mad, hurt etc. I guess to ME "Normal" is the average baby who breezes thru with no interventions. Both my kids will need therapy now. Thats tough on my heart. I feel like we cant win. Why us? Again? Really!?!? I LOVE our physical therapist, so Im confident that everything will be okay. She could tell my heart was being ripped when she told me. I could tell she didnt want to tell me she would need "help." She kept saying "She will be okay." I know she will. I know it will. It just sucks. You never want your child to be sick, let alone have any type of condition. My neice had tort so I am confident that it will be fine. It will just take some extra work on our part. Stretching is a regular part of my vocabulary. Now it will be in Tayvahs as well.

While at Tayvahs 2 month appt yesterday, her Dr approached me again about growth hormones for Brielle. He said he was watching her in the hallway and looking at how small she is for 30 months. She is only 21 pounds at 2 1/2.  He would like to do a thyroid test on her, an insulin test and a bone age test on her. He said he wants to look into if her pituitary gland is functioning. This is also tugging at my heart big time. While I DO NOT want to put her thru all this testing, as she has been thru more than I have at 28, I feel it is necessary to make sure her thyroid and pituitary gland are okay. If something is off and we decide to go for the hormones, they may help her motor skills with the Cerebral Palsy, but not always. Or do we just say screw it and let her be 5 foot 100lbs her whole life????? We have some decisions to look into in the next 6 months.

Wednesday, November 28, 2012

All Smiles in the Peterson house!

Brielle had her monthly nutritionist appointment Tuesday and weighs in at 21 lbs 14 oz and 33" tall. Fully clothed :) She will be 30 months on Dec 1st. Since the scale was here, I threw Tayvah on the scale. My little pork chop weighs 11 lbs 14 oz! These two kiddos are total night and day! At one year of age, Brielle was only 17 lbs. At the rate Tayvah is going she will weigh more than Brielle by age one. :) She has gained 3 lbs 3 oz in less than 2 months! I love it!

Tayvah just started her real smiles about 2 weeks ago! I love them all! Brielle loves to see her smile and it melts my heart when Brielle copys me to try to get her to smile! Its adorable!

Brielle is amazing! She is so smart and so funny and so naughty all at the same time!!
  • She knows quite a few colors so far, her favorite being pink and purple! She knows orange, blue and green too.
  • She LOVES to since BINGO, but just sings the "HAD A DOG" part. Its quite hilarious!
  • I was watching her on the video monitor after she walked upstairs and wanted to take a nap, and then decided she would rather play. She looked in the corners of her crib and said "Wheres mom? In the corner? NOPE." and did it about 3 times. It was so funny! She got the "in the corner" because my mom was helping me paint and she asked where grandma was when she was behind the stove. I told her she was naughty so she was in the corner (which we dont put Brielle in the corner, but she associated it with naughty lol).
  • Her favorite game now is Hide and seek. She laughs so hard she can barely stand up.
  • She also is obsessed with coloring! She colors 80% of her day! And she always wants someone to color with her.
  • Her favorite show (well one)  is Full house. She loves her 'Show'. She gets soo excited when it comes on and screams and dances! She will actually sit still and watch most of it in silence. Most shows she wont sit still and watch over a few minutes.
  • She has been showing signs of wanting to potty train so we have been! Ive tried the pull ups and she does not care to wear them. She would rather go bare butt or big girl undies. Tonight she went over 2 1/2 hours without an accident. Pretty good considering I have not been hard core about training.
As far as her therapy goes, This week has been great! She didnt have therapy last week due to the holiday, and she kept asking for Lisa (her physical therapist) and telling me she missed her!! Yesterday when she came over Brielle ran up to her screaming her name and gave her leg a big hug!! It was so cute and of course melted Lisas heart! It is going to be so so so hard to say goodbye to her in June!! But the good news is, Lisa lives just around the corner from us ;)

Sunday, October 28, 2012

Adjusting well as a family of four!

Our family of four with our fith watching over us!! I never understood how much love you can have for something so little and new! In my previous posts, I was worried about not having enough love to go around. My fears have been put to rest. However, I have been struggling with time management. I suspect Tayvah has some colic and acid reflux going on. Ive been trying to manage it with gripe water, gas drops, and sitting her upright for atleast 30 min after a feed and feeding her upright instead of laying down. While this process takes alot more time, I think its helping manage it. But it takes away alot from Brielle. She has not figured out to "share" her mama time. She LOVES her sister and wants to hold her every waking minute. Which I love that she loves to hold her, but it just isnt realistic. We've noticed that her feelings get hurt now. A characteristic she has never shown before baby came. She will pout and even shed tears which yanks at my heart. I know its part of life, but its still hard to see. She also wants to cuddle alot more. Which I gladly jump at every opportunity! We try to include her in everything we are doing with Tayvah that she can help with. All in all, the change has taken very well and we are pretty well adjusted. I just need to sort out a few things, like learning how to go to the store and juggle two kids. Ive only ventured out by myself once so far in 3 weeks. Brielle usually minds pretty well, but she gets in her 2 year old moods for sure! I also need to figure out the feeding schedules. Brielle always wants to eat when Tayvah eats so I am feeding Tayvah when Brielle eats, then clean up, then play and I usually dont eat until Josh comes home. While this is helping me loose all the weight and Im actually 4 lbs lighter Pre pregnancy, its not the healthy way. I never thought it would be so easy to "forget" to eat.

Therapy has picked back up because of the botox. When she gets botox her therapies go to 2x a week instead of once a week. This coming week we have appointments everyday and 2 on Thursday. We stay busy, thats for sure! Thursdays therapy went pretty well! We are seeing some good signs of botox. But Brielle gets bored with the therapy we do. We've been trying to take her to the playgrounds and funset etc to work her, but now with winter coming it is hard to use the playground. Time to put my thinking cap on and come up with new ways to stretch her and get the most out of botox. So far, we've been using Tayvah as a decoy. I will lure Brielle to sit on her ball and I will hold Tayvah on her lap while Lisa stretches her ankles, legs, and core muscles. Or we will coax her to do her stepping stones with the reward of holding Tayvah at the finish line. Poor Tayvah hehe but it works! And Tayvah tolerates it extremely well! 

Thursday, October 4, 2012

Tayvah Rose

Our little Tayvah Rose Peterson arrived on Tuesday October 2, 2012. She made her debut at 10:16am and weighed in at 8lbs 9oz and 21" long. She has a full head of dark dark hair. She is perfect. We are so in love! This experience is so different for Josh and I. It was not rushed. It was relaxed (well as much as it could be). We had to be at the hospital 2 hours before my C Section. I had a nurse, Kari, who I have kept in touch with since my stay with the twins. That right there probably made me chill out, because I "knew" her. We could chit chat small talk and I didnt have to just have the surgery on my brain. We arrived at the hospital and put our things in our room and then went to the OR to meet Kari to get prepped for the surgery. I do not remember much of the twins emergency C Section at all.  I was prepped in the same room that Josh had to wait in for the twins by himself and wonder what was going on in the double doors only feet from him. Brought him back to alot of memories. Once I was prepped I walked into the OR room where I got my epidural. OUCH!! It was crazy pain! The anesthiologist was a very nice guy tho and did whatever he could to make me comfortable. Once I started feeling sick to my stomach he would put something in my IV and the feeling went away immediately. Once I was completely numb they let Josh come in. I  was a nervous wreck before he got there and I couldnt stop shaking. Once Josh came in he plaed his hand on mine and sat down by my head and we just made small talk to keep us both calm and try not to think about it too much. The Anesthsialogist was watching and giving Josh and I a play by play of what was happening since we could not see anything other than the blue curtain. Kari was also telling us when her feet came out, then her butt, and then we heard the cry. It was so amazing to hear your newborn child scream and cry! It was months before we were able to hear Brielle cry. Josh then got to go over to the warmer and cut her cord. We got to watch them clean her up and weigh her etc etc. After she was born and cleaned off a bit she was given to Josh. He brought her over to me right away and held her by my head so I could see her. She fell asleep and was so content. It was such a great feeling! After I was taken care of they got me in my bed and I got to hold her on the way to our room. In the room we took her foot prints and Josh gave her a bath. She got to stay in our room with us the whole time. I could not believe that she was ours. Everytime I looked at her I had to tell myself she was really ours. She was my baby. It was amazing to get to see and feel all those things that first time moms get to experience that we missed out on with the twins. Our birth experiences were night and day this time vs last time. Each was unique and I embrace them both.

Brielle is beyond excited about her sister. She can not stop smiling when she sees her. She loves to hold her and kiss her. She always has to know where she is at all times. She loves to help feed her as well. She is really going to be a good big sister and helper. When she leaves me at the hospital for the night she is so funny! We do the whole kiss hug etc and say I love you. She walks out of my room and pokes her head back in and says "Bye" I tell her bye back and she walks out. Only to poke her head back in and say I LOVE YOU. I say it back. She will do this several times until dad makes her leave. Then she yells it down the hallway until I cant hear her anymore. It is so funny and so cute! She melts my heart!

Wednesday, September 26, 2012

Apple Update

Monday I had my OB appointment for 38 weeks. I ended up in the ER on Friday for shortness of breath. They thought I had a blood clot in my lungs. They took vials of blood and did some DT something test that came back elevated which could have meant I had a blood clot. They had ultrasound came in and did an ultrasound on my legs as they are swollen. No blood clots, just pregnant! Since the blood test came back positive I was then sent down for a CT scan to check my lungs for clots and that too came back negative. So I was cleared 5 hours later! After leaving, the episodes kept coming. I was talking to my best friend Kelly the next day at work and she seen me have one and said that she thought it was Anxiety as I was talking. I think she is 100% right. All of this is coming so fast and its hitting me hard that soon our family of one living child will become two! Do I have enough love? Do I have enough time in my day? How am I going to balance all of Brielles therapys and my exercises I have to force her to do on a daily basis and take care of a newborn? I know at the end of the day, I will be fine. But of course it runs thru my head. I keep having Brielle and Aydens birth running thru my head. It is clear as day. The people running. Heather running me down the never ending hallway to the operating room. Being put to sleep and not knowing if Id wake up with a baby or if she too would pass. Josh not being able to be in the room. The fear on his face. He was my rock thru my whole bedrest and to see him crumble with fear has stuck with me. Only natural and I do not blame him at.all! My sister collapsing in the hospital in tears as they took me way way to early! The sudden need for emergency is haunting me. Its all too much. There I said it. Its all too much. And on top of being scared freaking shitless of another horrific birth, which I know the chances are pretty slim with this one and Im  15 weeks further, but the possibility is always there, I am worried about Brielle. Worried how she will handle the new baby. If she will feel left out or abandoned. I am so so so so so nervous about leaving her. I am all she knows. She wakes up to me every morning. Goes to bed to me and dad every night. Im her routine. So my goal and priority is for her schedule to remain the same as it is now and we get thru these two days peacefully! My anxiety about it all is alot tho. Ive never had anxiety a day in my life. So when it happened to me on Friday I had no clue what it was. I hear ALOT of moms go thru the same thoughts I am with Brielle. So I know Im not alone. But it still sucks. That little girl is my everything. And I dont want her to wonder where her mom is and why Im not there. I hope everything goes smooth and she can stay in her routine and not much gets thrown off to the point that she is sad. I told Josh he cant tell me if she is asking for me or sad until I get home. I wont be able to handle it!

So Back to Mondays appointment....She measures my stomach as she has done for the last 18 weeks or so and I was measuring 42.5 weeks at 38 weeks. They like you to stay within the 2 weeks plus or minus. I was 4.5 weeks. So red flag. She listened to her heart as usual and that was 156 which was perfect. Then she did my check and I was 2-3cm and 70% effaced but my cervix was really high up. She couldnt tell if baby was head up or down so I was sent down for a ultrasound to check position and because I was measuring so big she wanted to see how much this baby weighs. Baby is still breech and weighs 9lbs 1oz approx. Ultrasounds can be off a pound either way, but thats still a big baby! Brielle was 1lbs 6oz! We're going to have to put the newborn clothing away and get out the 0-3 months! I told Brielle she better get growing, her sister will be wearing her clothes before she gets to! I also have extra amniotic fluid. Last time, I didnt have enough fluid and babys were small, this time I have extra fluid and a big baby! Everything is so different this time around! The doctor thought maybe she was so big because I have diabetes so she had me redo the gestational diabetes test that day which came back negative. So we're not really sure why she is so big. After I got home Dr. Ramsey called me personally and said because the GD came back negative, I have extra fluid, and shes so big they would like to see me Monday and have me do a non stress test on the baby. Im not really sure the point of a nonstress test since the next day is our scheduled C section! Yes October 2nd is the day!!! My birthday is October 3rd! Dads is Sept 30! Great birthday present! So less than a week and we will be able to meet our little Apple finally!! So excited and nervous and anxious! Its finally coming! The day is nearing! Enjoying this last week with Brielle as an only child :) We've been telling Brielle her name as we finally have one, and today she was walking around saying it!! I love it! I hope she is excited to have a new baby in the house! She loves babys so I hope she loves her baby sister just as much!

Sunday, September 23, 2012

Lil Liam

As the mom of a 24 weeker, I know how extremely scary, emotional, upsetting, frustrating, up and down, but rewarding the NICU experience can be. I recently was told about a mother who had a 24 weeker not to far from me. His name is Liam. He is currently 10 days old. Today, it was discovered Liam has pneumonia and his kidneys are not fully functioning. At 20 days old, Brielle got pneumonia and her kidneys shut down and she was put on the Oscillator. I love blogging for this reason. When parents ask me how long it took her to get to 2lbs etc I can look back and see. Here are the 2 blogs that I had written when Brielle was in Liams spot.



Brings me back to those days just by reading the posts. My heart is with Joleen, Gabriel, and Liam during this time.

So with that being said, I am asking for prayers for this family. I am asking that if you do not believe in prayer, please send them good vibes and healing vibes for Liam. We know that all the good vibes and prayer while we were in the NICU for 98 days sure made the world of difference. It is a scary scary place to be by yourself. Knowing that they have thousands of people thinking of them is a great feeling. Send this little boy some love :)

Wednesday, September 19, 2012

Asthma? Allergies? What is it?

Took Brielle to the asthma/allergy specialist today. They ran about 20 allergy tests on her and the only one that came back was that she is HIGHLY allergic to cats. Just like her daddy. I was kind of stressing she would be allergic to her dogs. She would be devastated if we had to get rid of them. They are the first things she asks for as soon as she wakes up. Dr. James basically said the same things Dr. Krainik said. It is all definately up in her head region and not so much in her lungs. He said she has bronchio blockage and the wheeze we are hearing is from mucas. Her nose is puffy and he switched her from singulair to zyrtec now. We will give this new med 2 weeks and if it doesnt work in 2 weeks or so depending on Apple, we will bring her back. He said if the zyrtec doesnt work then he wants to check her for reflux and possible aspiration of fluid into her lungs. Im not sure how I feel now after leaving this appointment. I feel that we put her thru all these tests, for really no answers. Her poor little back has red spots all over it. Shes been on 8 different medications thus far and they have pretty much done nothing for her. The doctor kept going round and round....Lets take her off this and put her on this. Actually lets put her on this and keep that. etc etc. I could tell her was stumped and I even asked him if she stumped him. He said well just trying to think of the best route to go with her. Very nice guy, but Im pretty optimistic this wont work. He brought up how her eyes looked tired and like she was just crying but she keeps smiling. I said, Exactly what Dr Krainik said and she does! She looks very sad and pitiful. She acts different too. But like he said, when people get sick they act different and for her, it will affect her tone from her CP, which Boy is it!! She is so tight lately and she falls alot more, which in turn gets her so frustrated and then, well, I have a 2 year old on my hands lol. I just want her fixed!!! Its been since June Ive been going round and round and noone can seem to figure out what needs to be done. All the doctors see and hear the problem but cant figure out how to get rid of it. So defeating!

Sunday, September 9, 2012

Waiting game

Brielle still has this wheeze. I took her in to the Dr again (5th time now) and he put her on singular and a nasal steroid spray. He said her lungs sound great and that it isnt her lungs that are making the wheeze its all the congestion in the back of her throat. A 2 year old doesnt know how to clear that. So we will give the nasal spray and see how she is this Thursday.

Brielle got her orthodic to stretch her ankle at night. We put it on her Wed night and she did very well with it! I didnt know if she would tolerate it and actually sleep thru the night with it on but she did! Of course that was the first thing she asked me that morning was to take it off, but she did it! I then noticed after taking it off that she had a big red and puffy raised sore on the top of her foot. I took pictures of it so I could show the orthodic guy (Peter). Then her therapist came and I showed her. The orthodic has been off about an hour and half and the red mark was still there. She said that it should go away in 30 min or less. Then she noticed her heel was all red too. We drew some marks on her heel to show Peter. Peter came on Friday and the mark was still visable. He put some extra padding on her brace but said that she does have a high toe bone that ends there so hes afaid it will always be alittle red. But hes hoping that the extra padding helps. So we will try them again tonight, we wanted to give her a break and let the redness come down a bit. Then our goal is to get her a stretch of 20 degrees up from the 90 degrees the brace is set at. Right now we can stretch her comfortably 10 degrees. So it will take alittle bit to get her to the 20, but he said once kids reach that 20 degree goal, they are walking much much better and then she should be able to just wear the SMO (Ankle) of the brace and not the full DAFO that goes up to her knee.

2 years ago today, is the anniversary that Brielle stopped breathing. It is still clear as day in my head. The dates clear in my head. Its hard to forget certain dates. Such as my water breaking May 7, 2010. Ayden passing May 31, 2010. Brielles birthday June 1, 2010. Coming home from the NICU Sept 1, 2010. Stopping breathing Sept 9, 2010. Coming home second time from the NICU Sept 14, 2010. Im not sure the dates will ever leave my mind. But One thing I do know for sure, is that Brielle is a miracle. She is incredible and has taught myself as well as so many others the true meaning of life. Thru this incredibly difficult journey, we have met incredible people!! People who have impacted our lives in ways they will never understand! We are so very blessed to have each and every one of you in our lives! The 911 dispatcher that took my call that night, just posted a "tribute" to Brielle. She too, has not forgotten 2 years later. That means alot! Im so glad that we can be a part of Jennis life still 2 years later! As well as the NICU nurses, doctors, and respiratory therapists. Without each and every one of you, Brielle would not be here. You all are incredible people!!

I had Apples check up last Monday. We had a growth ultrasound that showed she is 6 lbs 10 oz. 86% for 35 weeks. At 90% they start to be a bit concerned. After the u/s I told Josh to just take Brielle home because my Dr wanted to check me and do the strep B test. Never thinking anything would be "alarming". My Dr came in the room and asked me how I was. I said pretty good! She said Good then sat down with a Sigh. She said "Baby is in the 86% and we dont tend to worry until 90%. Shes a good size, but she is laying side ways which is a concern. Usually by 36 weeks they go head down, but I am alarmed that she wont because of your previous twin pregnancy. Your uterus is stretched due to the twins being sideways last time so she has alot more room in there to stay sideways. And lets face it, I would rather take the ride laying in a hammock than with my head down too." Okay, So what do we do from here I ask?? She said that we need to be alert of any signs of labor. If I go into labor (Any contractions what so ever or my water breaks) and she doesnt drop head down (Which at 36 wks tomorrow she hasnt yet) I need to rush to the hospital. She said that if come in on my Monday appointments and I am dialated to 4cm she will take the baby right then and there so be prepared. So she then does my check. She was checking longer than normal and she goes "Hmm" I think Hmm what????? "You are 2cm dialated" Really??? Okay NOW what? She again emphasizes that if I show ANY signs of labor to get to the hospital immediately. She asked how far we lived from the hospital and I told her 25 min, and she said if your water breaks you just call an ambulance. Now she has me alittle scared. How come this is such a need for panic?? I ask her and she said that because baby is transverse, if I go into labor she could drop fast and pinch her cord or strangle herself. That makes me feel all the better! So now I am a paranoid basket case and trying to force this child head down. But she already is stubborn as an ox and doesnt respond to anything I try. I asked about turning her and my Dr said she could not do an manual version because of my previous C Section. It could rupture my scar. So its up to baby to go head down. She had me get a belt to wear to squish her down, but she just kicks at it and shows shes mad and wants it off instead of moving away from it. Ive tried crawling on all 4s and doing pelvic rocks. Shes still laying sideways. I thought for an hour last night she was starting to go down, but she is back up by my belly button hanging out quite contently. I guess we will see what tomorrow brings! Yesterday I went to Cheese fest with my friend Karen and to a few rummage sales and then my cousins twins birthday party, so I was busy and up most of the day and had back pain galore and a few tightening of the stomach, possibly contractions? Josh is in his brothers wedding this weekend and Im alittle nervous. I didnt do as much as I will be this weekend so it has me alittle on edge. But Ill just listen to my body and do what I can do. Shes got to stay in til Sept 17th atleast!

Wednesday, August 22, 2012

Appointments Appointments!

The last several weeks, Between Brielle and myself we have been averaging 5-7 appointments a week! Its quite exhausting! But well worth it in the end when you see the progress it is having on Brielle!

Brielle had her 2 year post laser eye surgery check up on Monday. We were facing a potential tear duct surgery, but it resolved on its own!!! YAY! Her retinas look great from the surgery. And once again, she got the rockstar stamp from her doctor! He said that as fast as her ROP progressed and she needed the laser surgery so fast (They did it on a saturday as an emergency) that he is really really surprised she is not in glasses for near sightedness. Ill take it! Be as surprised as you want Doc!! We will go back in April to have a dialated appointment which is more invasive so to speak as they dilate her eyes and really really look in them as where Monday I just held her still and he just shined the light and looked thru his magnifying glasses into her eye. We know she can see. She spots things that Josh and I have to look for. Its incredible and Im so grateful her eyes are doing so well with all the oxygen she was on, the laser surgery, and how premature she was!

Brielle was fitted for new orthodics last week. Her therapist was up in the air as far as to keep her with her SMO on the right and her DAFO on the left. SMO is short and covers her ankle, DAFO is up the mid of her calf and seperates as she walks so she doesnt have to work as hard to walk. She had debated about putting her in both SMOs as that is our goal long term. She was worried however, because she really needs both the SMO and DAFO for her left as she varies day to day. One day her ankle is so flippn tight she tip toes and or drag her toe on the ground and the next day she looks great but her hamstring fires to quick so she is high stepping. She really does change day to day! So we had Peter come to fit her for the new orthodics and he watched her walk and stretched her, well TRIED to stretch her, and said her left was SO SO SO SO SO tight it was crazy. So him and I talked about some options and the one we chose was to go with the DAFO but made alittle higher than her one now, which Im not crazy about, but glad winters coming! And to attach a night stretch dohicky to it so that it stretches her toes straight in the air and back to give her ankle and he calf a stretch the entire night she sleeps. NOW, I am extremely excited that she will be getting this incredible stretch that she will NOT let me do to her! But I am skeptical that she will not sleep with it and tolerate it. All we can do is try and hope for the best. I just have a bad feeling it is going to be a nightmare! This is a child who HATES to wear shoes/socks and everytime she gets in her carseat things she needs to shed her shoes immediately. I hope she rolls with the punches and it doesnt bother her! It is really going to help her if she will tolerate it! Even if she gives me half a night Id take it!!

We have been battling a chronic wheeze with Brielle. It all started when she got pneumonia about a month ago. We've been to the doctor almost weekly and nothing is working. Her doctor now has her on singular. Our battle is getting it in her! I opted for the chewable tablet as she has learned to spit and spits the liquid out on us! Well now she takes one bite of the tablet and throws it to the dogs. Oye! So then we tried to crush it and hide it, well shes to smart and pushes it away and says "I dont like it." So this is my new past time, trying to hide all her meds in her food so they get in her one way or another! Not an easy feat when she is pretty much watching for any trace of medicine in her food!

Apple....Apple is head down and giving me incredible hip pain galore! When I went in for my 31 week check she was measuring right on 31 weeks. Now at 33 weeks she is measuring 35 weeks. Her heart rate was 128 which is low compared to her normal 150-160's. But still within normal limits. So my doctor is ordering a growth ultrasound to see how big she is and if she is growing too rapidly as the last jump was unexpected. I was alittle nervous, because I had asked around 24 weeks when my next Ultrasound would be and she said I would not have another unless something was wrong with baby. So when she said ultrasound my head started to spin. But from what Ive read and from talking to others, its just to make sure she isnt growing to quickly and I can still do a vaginal birth etc. So until the ultrasound, remain chill! Josh and I went and got all Brielles NB clothes Sunday so I could start working on them. I just pulled the first load from the dryer and I cant belive how big Brielle has gotten. Shes still alittle peanut, but man looking at these New born clothes really puts it into perspective how small she was at one point. And she didnt even fit in preemie clothes in the beginning. These kids grow too dang fast! I am grateful to be a stay at home mom and watch her grow. I can not imagine missing all the stuff she does. But I live by the saying "You need to be apart of your childs memories to make memories" If your not around and miss all the stuff they do and experience what do you have left? Nothing but looking back when they are 14 and want nothing to do with you lol With that being said, Apple is going to be here in no time! 4 weeks and she is full term already. EEEKKS! I really dont know where this pregnancy has gone! Its flew by all so fast!!!

Saturday, August 4, 2012

Just a small Update

We are 18 days post botox and baclofen. After ALOT of trial and error of dosages on the baclofen, I think I have found the one that works for her for now. On top of it, Brielle got walking pneumonia and a sinus infection a week later. And she even shared it with mommy and daddy! The steroids she was on made her all kiddywhampus and sleep was non existant. It was a miserable week! She was terrified to sleep in her crib, so Josh spent many hours in the rocker, rocking her so she would get some ZZzzz's and even slept on the living room floor and gave his little girl the couch so we could all get some sleep. All Star Dad! Now that she is feeling better we have hit the stretching and working hard core. She has out grown her orthodics so I have a call in to get new ones! Her hamstrings have GREAT length which I am excited about, but trying not to get to crazy about it since last time wore off after 3 weeks. Im hoping the combo of baclofen and botox will help it last longer. She changes so much day to day. One day her ankles are loose and looking great and shes getting her heel flat on the floor while walking, but still high stepping. The next day she is tight as an ox and walking on her toe and dragging her foot. But her PT, Lisa, is so proud of how the botox and baclofen have already helped her that I hope we keep going in this direction!!

I am so pleased to say that we have left hand isolation of her pointer finger!!!! For the first time ever, she will point and plays "touch" on my phone with her left pointer finger with out me pushing the other 4 fingers down or even telling her to get that finger out!!! I down loaded an app on my found that she uses her finger to point and pop balloons or balls. She LOVES the game and I truly believe that it has helped her get the isolation down pat! This is one of many reasons I would LOVE to buy her an Ipad. They are proven to help CP kids and there are so many helpful apps for CP kids that would help her even further. She has had the finger down pat for over 4 days now and I cant stop smiling everytime!! Big improvement from her using her thumb on that hand or pointing with all 4 fingers! So proud!

As far as "Apple", I am 31 Weeks Monday! I had to take Brielle to Dr Rink as it was her doctors day off, and she was asking me how far I was etc etc. We were talking back and forth and she asked me what I was going to do with a baby over 2 pounds. I said "I dont know, Wait, you mean I get to take this baby home with me from the hospital? They dont keep her for 3 months???" She just laughed. Its definately a whole new ball game. And Im loving every minute of it. She is SO SO SO active! Josh finally got to feel her last week. He wasnt sure it was her until I told him if he didnt feel that kick he was crazy. I think today she was having a dance off with my organs. Loving all the water and swimming all around!! Grow baby grow!

Brielle thinks that her sister is a chair. She will come up on the couch and climb on me and turn around and plunk her little butt right on top of my stomach and watch TV all snuggly and cozy. Wait til her sister starts to kick her off!!

Friday, July 20, 2012

3 steps forward.....2 steps back

Day 3 of oral Baclofen. Oral baclofen helps by reducing spasticity and improving function in children with cerebral palsy. Brielle has been showing signs of having muscle spasms over the last 2-3 months. Very possible shes had them longer, but starting to verbalize now that she is in pain, which is nice for us that she can help us out and tell us what is wrong! The baclofen helps relax the stiff muscles and in turn reduces tightness and tone and also eleviates the spasms she is having. We were giving her 5mg twice daily. At her therapy session yesterday, she had just woken from a 2 hour 15 min nap, that I had to wake her from for her session and she was still so sleepy she couldnt wake up. I raised the concern to her therapist that all day yesterday she was falling alot! And she would fall hard. She used to be able to catch herself and put her arm down to catch her or slow herself to a graceful fall and now it was hard straight to the ground. And of course, Brielle was getting flat out pissed off and alot of crying was happening! She got to the point where she just didnt want to walk and wanted to always be in our arms carried everywhere. Not like her at all. This girl loves to walk on her own. So red flag for sure! Her therapist explained that she has learned how to walk with stiff legs. She doesnt know any different. NOW we are relaxing her muscles with botox and the baclofen and she has to pretty much learn how to walk on new muscles all over. Try telling a 2 year old to be patient and work on that!! Today I am giving her 2.5mg of Baclofen twice a day and instead of morning and afternoon like we were doing, I am going to do mid morning and before dinner. She is just getting to tired and zombish to give them to her at 730 and 1230 ish. I want to space them out a bit. Her doctor did tell me that we are going to have to play with the dose and times she gets the pills. Its just really hard to watch your child struggle and become so frustrated. I dont think the 3 steps forward 2 steps back feeling from the NICU ever leaves with a micropreemie. And then add CP on top of micropreemie....... 

Tuesday, July 17, 2012

Botox take 2

Brielle had her second botox appointment today. I was alittle on edge, because I didnt know what they were thinking or what was going to happen. Recap...In April when she had her first botox, it lasted 3 weeks. While we dont believe it did anything for her hamstrings/legs, we do think it helped her get her midline and posture in check and stronger. She seems to be not pulling her arm back and winging as much when she walks as she was prebotox. As far as her legs, we all agree it did diddly squat. So with all that checked out the Dr said that she gave Brielle the minimum dosage for her weight because she is such a peanut. She didnt want to overdose her (Thank you very much) and she didnt want to give her too much if her body wasnt going to react well. Its like any other medicine, you have to make sure the child tolerates it well and isnt allergic etc. Our wonderful physcial therapist, Lisa, came along to give her suggestions as she is the one that works with Brielle weekly. I was grateful as I wouldnt know what to really tell Dr Morberg. They conversed and Dr Morberg did some stretcing exercises with Brielle and then discussed with me. Basically our options were to give botox in a few different locations because last time it was just given in her hamstrings and obviously she needed more. She explained to me that in alot of kids with high tone, Brielle, if you give it in one location the stiffness tends to go up or down. Ex. She gave it in her hamstring...upper thigh...so the stiffness stayed lower in her calf and ankles. Which makes total sense since she is toe walking and dragging her left toes. She also explained that Brielle is a prime candidate for Phenol. Phenol is a deeper version of botox. It lasts 6 months instead of 3. But for phenol to be administered she would have to be put to sleep for 10 minutes. Because she is walking and self feeding etc, we all agree this is not the right option for us at this time. I then brought up her thoughts on the oral baclofen I have mentioned before. I was quite surprised at her response. She LOVES oral baclofen for these kiddos and highly recommends it. She said she works with it alot! I asked if it botox vs baclofen or if they work well together and she suggested to have them work together. So thats what we are trying. Brielle got botox in her hamstrings and her calfs. Tomorrow we will start the baclofen. The only thing is, the baclofen is a pill. It doesnt come in liquid form. So getting a 2 year old to down a pill should be pretty interesting. I can crush it, but if anyone has tried to feed this child, they will totally get where Im going with this. She is picky! She wont eat applesauce, yogurt (USED to LOVE), pudding (seriously!?!?! What kid doesnt?). I have to get creative here! I hope the baclofen and botox combined do the trick!! We should know in about 2 weeks or so! Fingers crossed!

As far as my infection...I am on the antibiotics and I feel pretty confident that they have stopped/slowed the infection! Fri/Sat were kinda scary, but Sunday I felt completely normal. Almost symptom free! I am so grateful that it was caught in time and the pills kicked in right away! It was quite the emotional rollercoaster on Thursday when the news came in it was a positive test. But whatever god throws at us, we will take head on and jump right thru. Officially in the third trimester, I feel pretty good this rainbow baby is sticking til October!

Thursday, July 12, 2012


My emotions are running extremely high. Monday I had some weird things going on and seen my doctor on Tuesday. I ran them by her and she was concerned so she ran several tests to figure out what was going on. Since she was off on Wed I just got the phone call today. Tests came back positive for BV infection. The same infection that broke my water with Ayden and Brielle. The same infection that took my sons life. I am so pissed off this happened yet again. I have never gotten this infection while NOT pregnant so why do I keep getting it while pregnant? How can this seriously happen to a person twice??? I just dont understand gods ways! Im just glad I am alot further along that I was with the twins. God forbid something would happen this time, we have a much better chance. Lets just hope we this one doesnt spread as fast as the last time. As Im trying really hard to look back and think back I believe the time frame is pretty close to when my water broke and when we found out and when I suspected something wrong. Please let me be wrong. Prayers needed water sac stays tightly sealed please!!

Wednesday, July 11, 2012

Therapy therapy. Just a daily routine in this house!

Yesterday Brielle brought me one of her toys that I use often to convince her to let me stretch her. She came running to me with it and was yelling "I wanna stretch, I wanna stretch." Now mind you, she doesnt want to actually stretch, but she associates the toy with stretching. She just wanted to play with it. So I let her. But it made me sad that she can put those two things together. A child shouldnt have to associate her fun toys with stretching and therapy. I also have used her dress up beads and put her between my legs and extend her legs out and put the beads past her toys and have her stretch for them. Well she doesnt play with them anymore, probably because when she does, I make her stretch. Not what I was aiming for, but what the outcome has come to. The toys seemed like a good way to try to pursade a 2 year old to stretch and get the mission accomplished but Im thinking its started to backfire. I am thinking now I will need to put aside certain therapy toys and leave her favorites for just fun play.

Next Tuesday is botox day. I have so many mixed emotions. I dont know if I want to inject her with botox if it isnt going to work. I dont NOT want to give it another try because what if it works? Maybe she was going thru a growth spurt and the timing was just wrong? This time will be different? Maybe they needed several more locations other than her hamstrings?? PT is now coming with me to this appointment to put in her opinion of where the botox should go. She wants the hamstrings, ankles, and abductors injected. That seems like a lot to me, but when you do look at all 3 locations and how she is walking, falling, standing, stepping, It really does make sense to do all 3. I have also questioned the use of oral baclofen. I will be throwing that out to her rehab Dr on Tuesday. The only negative to that, is it is a whole body relaxant and her posture is already not ideal, so it will make it that much worse. And will she do Botox and Baclofen or one or the other? Or do we totally forget botox and put her under for phenol which is deeper and goes straight to the precise area that needs help??? AHHH so many questions!! I never know if Im doing the right thing or not. Josh tries to hard to be in the mix and help with decisions but he just isnt here to hear all the suggestions and what is really going on, so to help make a decision is like making it blind. I talk to him and he always says he trusts what I think but sometimes I dont know what to think. I like to think Im making the best educated decision but I question it. Alot. And then when it doesnt work, like her last botox didnt, I take it pretty hard.

Baby 'Apple' is growing.  I was 27 weeks on Monday. I am measuring 28.5 weeks which is within normal range. Heart beat is 150 and strong! She is moving around like crazy! Still trying to get Josh to be able to feel her. I dont know sometimes how he cant feel some kicks. I feel like shes trying to break loose sometimes! Shes a wild child! I never felt the twins as my placenta was in the front so it blocked all the movements. This placenta is in the back so I feel her quite frequent. She Still is not named. But one day she will be. hehe And I was just informed that she doesnt have to be named til she is a year old. Whew! I thought we had to have her named to leave the hospital. lol
It is definately hard to get "excited" and things ready for this one. While everything is going way to good, that is just it! Things are going way to good to be true! I keep waiting for that Dr appt to happen where she tells me something is wrong. I cross my fingers every day it doesnt. It will be so different to have a baby in the room with us. And to go home with a baby the day I leave. I really look forward to that and dont want that dream crushed. Its always in the back of my head, but for now, I put leaving with a baby top priority! Even tho we dont have a crib yet for the new baby, she will have a place to call home :) We may be doing some shopping on the way home from the hospital lol.

Thursday, June 21, 2012

Proud mama!

Today was a busy busy day for lil Miss. We had Physical Therapy with our normal PT at 7:30am! Brielle was NOT having it! She screamed everytime we tried to get her to do something. Lisa did her best to get her to stretch and work even tho Brielle wasnt having it! I knew she wasnt tired, because she had just woken up in the last hour. So we are blaming it on her 2 year old 'tude or her just having an off day. I knew she had a busy afternoon ahead of her, so I knew I HAD to get her down for a good nap! She went down at 10 and was up at 11:30. At 12:15 she had her teacher come, to evaluate her since shes 2. They now do not give her the adjusted 'benefit of the doubt'. Her teacher also brought our new OT, since I let the last one go. I am hoping and praying the new OT can help Brielle and benefit us. I felt the last OT was wasting our time (literally 15-20 min late Every single session) and she kept doing therapy that just was not working and was not willing to try new things. The new therapist has a whole new approach on how she does therapy and I think that this will be a good fit. We dont even have a year left with this program, since they discharge when they are 3. Sad, sad, sad day that will be!! Soo Brielle took to the new OT, Mary Ann, right away! She is fun! And nice! And knew just how to get Brielle engaged in the activities. Well maybe Brielle was showing off and next time will be different :) Then OT left, the teacher stayed and at 1:15 Speech, a speech student AND her new nutritionist came. So all in all Brielle had 6 people come "look" at her today.
Speech....She is speaking at a 23 month level!! she understands speech at a 25 month level! Which means she is doing AWESOME and was DISCHARGED from Speech!! WOOOOHOOOOO!!! Cross one off our list!! We love miss Lisa, so it was sad to see her go, but Brielle gave her a great big hug!! We ended up adding the nutritionist to her schedule now. I had her evaluated a long time ago for her but she didnt feel it was necessary. Now however, since her height/weight ratio is extremely low and she is not even on the growth charts, she felt it was necessary to see her monthly. Cross one off, add another! But I dont think it will be a bad thing for someone to help me get nutrition into her and find creative ways to get the extra cals she needs. Dr Krainik was going to set me up with one anyway last Friday, but I had the call in already so he was pleased to hear I was on it already. She is dropping me off some samples and paper work tomorrow so we can start working on it! All in all, a busy but good day! Brielle gets so smiley and excited when I make a big deal out of her accomplishments! It is a big deal! For mommy and Brielle! Daddy will be O so happy when we tell him tonight too!! She is amazing! She is truly Ah-MaZiNg!!!

Sunday, June 17, 2012

long overdue!

I typed out a 2.5 page blog a few weeks ago that never posted. We really need to get a computer! So let’s try this again… Brielle is 2!! Where O Where has the time gone? I remember it like yesterday. The day my water broke. The doctor advising us to terminate at risk of my life due to infection. It was no option for us! The NICU doctor giving me all the scary statistics of a 24 weeker, given we even made it that far! Brielle and Ayden were given 30% chance to live. Ayden fought so very hard to get him and his sister to “viable” gestation of 24 weeks. He got her 2 days past! Long enough to get the steroid shots. Then he passed quietly and peacefully. Brielle came into the world exceeding everyone’s expectations. I knew we were going to make it home with a baby. It was definitely not an easy road, but here we are. 2 years later!! Josh and I could not be more blessed. Our little girl defied all the odds. She is beautiful, intelligent, adorable, and sassy! She is the light of my life. She is so full of love. She never hesitates to give you a kiss or blow a kiss to a stranger. Never says no to a quick hug either! I find myself staring at her at random moments thinking how lucky I am to be in her life. To have her in my life. I can’t imagine life without her. I often think of how our life would be with Ayden here. With twins. I’ve watched my niece a few times who is the same size etc of Brielle. They were supposed to be 5 weeks apart. I see them interact and wonder if that’s how happy Brielle would be with her brother by her side. How would they interact with each other? I feel like Brielle is really missing out on that twin bond and that hurts my heart. One day they will meet and get that hug they both long for! My little 2 year old is not quite 20 lbs. She is on the smaller side, but coming from 1 lb 6 oz I’d say she’s doing pretty well. She is talking in 3 word sentences. “I want Chesse/juice/down/blankie” etc. “I’m getch you” “here you go” and my favorite “I wuv ma” She is talking so well that speech has stopped coming and calls to check in. I have no doubts she is on track with speech. She is a parrot and will repeat everything! She usually repeats the last word you say. Every time we change her diaper I tell her lets change your pants and she lies down. She then says PHEW hehe it’s so funny. And the best, she has learned how to say her name! She says Brielle and Peterson and that she is two. Not together but she says them. She is a fast learner and picks up quickly! She thinks she’s so funny when she says her name so she will say Brielle HAHAHAHA and laugh. It’s really cute. She helps pick up her toys and then makes a bigger mess, But it’s a start right? Her words are endless! She says TV for the DVD player in the car. Keys, mine, blankies, dog, O Shoot, book, boom, bumper, phew, I’m cold, hot, I wanna cuddle, coat, pancake, waffle, orange, juice, drink, hot dog, chesse, cracker, cookie, Ice (kid LOVES ice!), diaper, dirty, shoes (she’s a girl, loves her shoes!), cars, ride, bike, toes, nose, ear, baby, apple, belly button, touch, down, up, tape, No, O man…I could keep going all day. All of the sudden the words starting flying and there was no stopping her! I love it. I love how she communicates and talks to me all day long! She is a jabber jaw and I wouldn’t change it for the world!! She knows her toes, nose, ears, mouth, eyes and head. She knows how to wiggle her fingers too. She LOVES to dance! Anytime there’s music on she wiggles her little butt. She’s such a doll. Brielle got Botox back in April. It helped amazingly for 3 weeks and then it like wore off. We are not sure if the dose was to low or she had a growth spurt or what happened. She is back to where she is pre Botox, if not stiffer. It was an awful feeling of defeat. Monday was spent crying all day. I feel like I have failed her. She should have come 16 weeks later than she did. She now has so many hurdles in life to battle and I can’t do a damn thing about them. It hurts my heart in the worst fricken way! I don’t think we stretched her enough, even tho I thought we did. She is falling more than ever now and I just don’t know what to do or think about it. To see her do so well and then go backwards is not a good feeling. What mother doesn’t want the best of the best for their child? I know I do. And to me, this isn’t the best. Her hip clicking is worse so we made a trip to Milwaukee yesterday to see her orthopedic. They were even commenting how stiff she is. To have a specialist lay your child down and comment how stiff they are and then watch her walk and comment how she’s not walking properly is a knife to the heart. I know it. I see it. I hate it! I want to know HOW to fix it. I know she’s stiff. I know she’s talking high stepped and tip toed. I see it. Tell me what to do now!!! No one seems to have answers for me and this mama is getting just a tid bit irritated! Brielle has a big 2 year old attitude when it comes to therapy lately. If she doesn’t want to do it, she is not doing it come hell or high water. Which in turn makes is all that much more difficult to get her stretched. She can’t comprehend that stretching will make her walk better and feel better. You can’t reason with a 2 year old, which is daunting! She has just started grabbing her thighs and walking after she’s had a busy day stretching or walking. I’ve brought it up to 2 people now and they think she may be having spasms due to the CP. CP does cause muscle spasms. So I have just started researching that and came across Oral Baclofen and going to be asking more about that to her Drs and seeing what they think about starting her on that. I don’t like to give her a lot of drug/steroids because let’s face it, This little girl has had more stuff put into her little body in her short 2 years that most adults have by the time they were 10! But if it’s going to help, I will by all means question it, research it, and see its results. We see her rehab Dr again in July and will be questioning WHY the Botox didn’t work and if a 2 nd round is even worth it. Today was her 2 year well check. Why did I think it would go well?? She is not quite 20 lbs. She has barely grown since she’s been 18 months. In a year she’s gained 2.7 lbs and grew 2.5”. Her doctor is not worried about her weight. He is worried about her weight to height ratio. Her ratio is 17% which is not great. He wants to send us to an endocrine growth specialist. She is not on the charts for weight or height at all. Not even in the 1 percentile. For numbers to be that low you are a prime candidate for growth hormones. He said that we will have a much better overall picture in 6 months to a year as to where she stands for that. It’s not something we need to jump and rush to a specialist for, but definitely something he wants us to keep in the back of our heads and consider in the near future. Baby sister is growing well. I am little over 23 weeks. Next wed is the exact gestation I delivered the twins with this baby (24+2) it’s weird to me to think that What is inside me now was Brielle when she was born. The size, the look everything is just crazy to me. And to think I have another 3 ½ months to go! I used to stress a ton and then I had the mind set of if it’s going to happy, it’s going to happen. There isn’t a damn think I or anyone else can do about it. I was at the Dr the night before my water broke and there were no signs! All I can do is pray for a full term healthy baby girl at the end of it. So that’s my approach! I don’t like to talk about it tons as I feel I’m jinxing myself. My cervix looks great and I’m seeing my DR every 2 weeks and getting the p17 shots weekly. She is kicking around like crazy and in the last week I have really started to feel good kicks! And quite a few people have been asking about my growing belly. Hence, I haven’t really been talking about it, and I haven’t told everyone (at work etc) that I’m even pregnant, but as my bellys growing, so is the news!

Monday, April 2, 2012

New Arrival.....

Josh is going to be a daddy in October, and I think its mine!!!

Josh and I are excited to share that we are expecting number 3 on October 8, 2012! Yes, number 3!I have two children. Ayden and Brielle! A few people have said, “congrats on number 2!”No, it’s number 3! Yes, physically it’s two, but in my heart I have 3 children. One living, One in heaven, and one in-utero! It makes me kind of sad to think that Ayden may have been forgotten already. He’s been left out. One mom of an angel baby acknowledged Ayden. That meant the world!

We got to see baby on Friday. It still does not seem real. Josh and I were not “trying.” I honestly didn’t know if we’d be able to get pregnant unassisted. Guess I found that answer out! It is a welcomed blessing tho! I am 13 weeks today. I decided to wait this “long” to say anything because 1. I couldn’t believe I was pregnant! 2. The risk of miscarriage was on my mind heavily! 3. I’m scared to freaking death! But now that cats out of the bag, I hope everyone will shoot us prayers for a full term healthy baby!

I am going to the same OB I had with the twins. She knows my history, which was a plus for me. She knows my fears! The first appt was at 9 weeks. 4 tubes of blood, pap, cultures, heart beat check…..Which she couldn’t find, but wasn’t freaking since I know that’s early to find it. Second appt was just for a heart beat check at 12w4d and again, no heartbeat. The whole Doppler and jelly on my stomach brought back so much anxiety from being on bed rest with the twins. When I was on bed rest, they would do heartbeat checks 4 times a day ish. So the month I was in the hospital I had approximately 96 doppler checks on both babies. Pretty routine as well as temp checks and blood pressure checks. So the second that jelly hit my belly and the first swoosh of the Doppler, my anxiety hit. My doctor knew it. She kept asking if I was ok and reassuring me that the babies little and it takes awhile to find the heart if at all. So after about 3 minutes of trying the second appointment she said “come on, let’s go to show you everything’s okay on ultrasound.” OK whole new wave of emotions! Let me take you back to my bed rest days so you can fully understand why I’m having anxiety…..Heartbeat check, roughly 9am May 31. Nurse could not find Ayden’s heartbeat. She tried and tried and went to find a “senior” nurse that was really good at it. Josh, in the meantime, tried to find his son. Senior nurse came in to try and she couldn’t try. I could tell by the look on her face, but I didn’t want to give up hope yet. I didn’t lie in that bed 3 weeks 3 days and come this far to give up yet! She couldn’t find him either, anxiety sets in. She called the on call doctor who brought in a bed side ultrasound, which is not as good quality as the ultrasound tech would have, but I would take anything. He couldn’t even find Ayden. He thought maybe I was going into labor, even tho I didn’t feel it, and Ayden was already in the birth canal. So the ultrasound team was called. It took them a little over an hour to get there. It seemed like eternity! Once she got there, as soon as the screen popped up, I knew. No one needed to tell me. The nurse squeezed my toe and that said it all. I immediately welled up in tears. Josh tried to stay strong, but he reached his breaking point too. My rock crumbled. The sight of Brielle was on the left side of the screen, swimming around like crazy. Ayden on the left. No heart beat. No movement. My last image of my little boy. Dead. He had fought all he could. He got his sister to “viability.” My little boy had lost his fight. I had failed my children. NOW what? We didn’t know. We didn’t know what this now meant for Brielle. I felt there was no going on. But I still had one to fight for. She was only 1 days past “viability.” Our doctor wanted to obviously leave her in the womb as long as possible. So the plan was to monitor me and the baby to the nines! I had those dreaded straps on my belly and because Brielle was too small, a nurse pretty much sat on the bed next to me and kept moving the monitor with her because she had so much room as she was only 1 pound 6 ounces! I had temp checks every 3 hours. The criteria of taking Brielle immediately were if my Temp went up or if Brielle’s heart rate went over 170. After awhile the monitoring got more intense. My nurse, Heather, who admitted me that night my water broke, happened to be my nurse that night. I hadn’t had her much in between. June 1, I started going into labor around noon and by 6 it was unbearable. I asked Heather straight out from her experience what she thought was going to happen. She said I’d have a baby tonight. I had already signed all the consent forms etc etc. It was reality. This was REALLY happening. Brielle born at 8:52pm 1lb 6oz 12” long. Ayden born 8:52pm 1lb 4.3oz 12” long. After 98 days in the hospital my baby was home.

So as you can tell, the dopplers and the ultrasounds DEFINITELY bring back fears and anxiety. I tried so flippin hard to NOT think about the past and focus on a happy, healthy, worry free pregnancy, but that most likely won’t happen. My doctor has a very high risk cautious plan. She has me coming in at 16, 18, 20 weeks for cervical length checks. Those are done by Trans vaginal ultrasound. I will also start progesterone shots at 18-36 weeks to help stop any preterm labor. Our plan is thru 20 weeks right now as that’s as far as I made it last time. She brought up the option of going to see a high risk perinatologist. That doctor specializes in high risk woman and will do more in depth ultrasounds and scans. I was going to see one with the twins. The day before my water broke, the ultrasound showed that Brielle was growing slower than Ayden so it was a concern. I never made it to him. My OB had talked and consulted with him the whole time I was in the hospital however.

I have several near and dear friends close to my heart that are currently pregnant or have been pregnant after their loss and prematurity or pprom. Mary said to me “We are in this together.” Yes, yes we are! We are the same exact due date! Another mama, Jess, is 29 weeks. She lost a 24 weeker as well. She is expecting a boy! She is my inspiration! The power of prayer is incredible. I learned that fast with Brielle. We are going to do this! We are having a baby!

Tuesday, March 20, 2012


From my last post, we All knew today was coming. Im an emotional mess.

The morning went well. Put all of Brielles "gear" on (Her Spio Vest, both orthodics and secured the shoes. Jealous of the average parent that can slip on a shirt and pair of shorts and shoes on their kid and out they go. Anywho, On our way to depere (about 35 minute drive) and Brielle ripped at her orthodics/sandals the whole way and got everything off by the time we arrived. Back to square one.

Get to the office, and they try to tell me I owe them $100 blah blah blah, I fought it tooth to nail and said that because we have private insurance and she has Medicaid on top of it, medicaid picks up all co-pays. They couldnt fricken understand that! I wasnt paying them a penny. I told them to call who ever their billing lady was and figure it out and I would pop back in when my appointment was over. She then proceeds to tell me that Brielles appointment "somehow" got DROPPED so she was never in the schedule. REALLY??? I scheduled this 6 fricken months ago! So we sat there for 40 minutes before they got all this crap figured out. A 21 month old, does.not. stay patient that long!!!! She came back and said they got new scheduling software so it probably got messed up that way and then billing came back and said we didnt owe anything, Just like I tried to tell them!! So frustrating when a business cant get their shit straight!

So now we get in the room, Brielle was being a complete sassy pants, as she had no attention span left because we just had to sit in the waiting room for 40 minutes. So she was literally beating on the doctors computer, pulling her diaper bag apart and flinging everything across the room, into everything she wasnt supposed to be and not doing anything she was supposed to be doing! Good thing Dr. Morberg was tolerant because by this point my patience were non existent! And Im forever grateful for her Physical Therapist, Lisa, Who is technically out on medical leave for surgery, that she came to the appointment with me.

Some of my "concerns" or frustrations more than anything, are her constant falling as I mentioned before. In the last few weeks she falls more than ever! She is getting mad and I dont blame her one bit. She fell 4 times in the first minute we were there, which then accompanied her fit. But I was happy that happened because they could see it. Lisa explained that because her hamstrings are firing so fast, she doesnt have enough time to recover from the fall when she tries to stand up and go at it again, which in turn makes her just keep falling. Makes sense. Dr M agreed without hesitation she was tight after she attempted to stretch her and needed botox, possibly phenol. She wants to start with botox for 3 months, if it works do one more round of botox and then go to phenol every 6 months if the first two rounds work for her. Typically by 2 weeks we will know the results of the botox. Some children even show great signs of improvement after 2-3 days. The majority of it will be in her left hamstring. And then some in her right hamstring. The botox can be done right in the clinic. The Phenol she will need to be put to sleep for everytime. Not excited!! This is my life. Its becoming more and more real. But I know that it needs to happen for her to lead a "normal" life! I will do anything for her look normal, act normal, walk normal, play normal etc. While waiting we seen a little boy, maybe 6, that has Right sided effected CP. You could see it in his step and in his arm. HAPPIEST little boy EVER! I loved it!! While it broke my heart to see the actual CP in an older child and think "Man, that COULD be us in 4 years" it melted my heart that he was so happy and loved all his therapists there and had to give them all "Five" before he left!

Sunday Brielle got really sick. Vomiting all over herself, dog, and dads truck. After I got thinking, when we got home from the retirement party (It was 78 here Sunday) and took off her spio vest she was HOT! This child was so warm and is always a hot box! She was in a crib at 3 lbs and I was told by the NICU Dr they usually dont like to crib them til around 4 lbs but her isolette wouldnt go down any further. So my assumption is she got a bit of heat stroke. She was dehydrated and didnt pee for 13 hours! I was just getting ready to call the Dr and she peed! So I brought that up and she said obviously keep the vest on as you can, but if your outside playing etc ditch it. We might try to kinesio tape her muscles that she needs help with :/ Ya blah....Or we can try to double swim suit her, as long as the suits are tight, or we can TRY to find/order a wet suit that she would wear to scub dive. Those are cooler, I guess. A few Ideas. I have quite a few suggestions thrown at me that I have to try and see whats works.

After everything, I forgot to ask about her tight wrists :/ Next time I guess.

Finally, I asked for an official diagnosis from a doctor that can put it in writing. I had asked her therapists what they "thought" she may have. I got Hemiplegic possibly going to diplegic. Well she ended up as a diplegic hypotonic Cerebral Palsy. Here are the definitions of each I found online:

Hemiplegia is a form of cerebral palsy that affects one arm and leg on the same side of the body. For most children with hemiplegia the arm is more involved than the leg and the end of the limbs have more problems. The wrist and hand have more physical problems than the shoulder, with the elbow literally somewhere in the middle. Similarly, the ankle and foot will exhibit more difficulties than the knee.

Diplegia is a form of CP primarily affecting the legs. Most children with CP will also have some problem with their arms but with Diplegia they are less involved and less severe. Most children with diplegia have spasticity, and have difficulty with balance and coordination. Delayed muscle growth and spasticity cause their leg muscles to be short, and as a result the range of motion can decrease as a child grows and the joints become stiff. The feet and ankles present more problems than the knees due to a short tight Achilles tendon, which can lead to toe walking. There is risk that the hips may become dislocated and for this reason, the child’s hips must be closely monitored.

The link for Hypotonic if you would like to read it....

This is the first time We've heard hypotonic for Brielle. But reading it makes perfect sense. She sits very "lazy"ish. When she sits she sits reclined and never straight up and down. Which is why she is in her spio vest.

So all in all a pretty informative appointment. April 17th is the day for botox. While I knew it was coming, Lisa warned me too, It still strikes a new cord. I thought we'd have to fight alittle harder to get the botox. I didnt think she'd suggest it within the first 5 minutes of just observing her. After she "tried" to stretch her and seen how tight she is she then said we'd try the botox twice and if it works then we will do the phenol which lasts 6 months instead of 3 months. And then to hear an official diagnosis of diplagic hypotonic CP, definately got the tears rolling. As a mother, you want the best for your child. I know I've said this over and over, but its true. When your child has a runny nose or a common cold, you wish you could take it from them and do anything to get them better. With CP, I cant. I cant do anything outside of my power to help her. And I dont feel like its enough. I dont feel like things are moving fast enough. Botox is less than a month away and I dont feel like its soon enough. She did offer to me (After I Told her ASAP!!!) that I could drive to west bend to get it, but my therapist is out on medical leave and it just didnt make sense to do it earlier than the 17th. Brielles therapy needs will be increased to twice a month to weekly visits now. I need to step up my stretching requirements and orthodics will need to be worn more often. Lets just say, this better work!! This is Brielles future we are talking! This HAS to work!!!

Thursday, March 15, 2012

This ones for Auntie Em........

My sister informed that once again, Its been soooo long! Im becoming a bad blogger!! Little peanut is keeping us busy! As well as this 70 degree weather in MARCH! Love love love!!

Good day for a blog. Since the last few days Ive been feeling defeated. Tuesday, we have our 6 month appointment with Brielle pediatric rehab and medicine Dr. At this appointment we are going to question botox. Brielles physical therapist, Lisa, who I absolutely adore and trust has brought it up and after I researched it to death, I feel it is a good thing to discuss and possibly go thru with. I have a whole page of questions and concerns. Side effects, how often she will need, will she need to be casted, What if it doesnt work?? Another concern I have is her wrists. Brielle can not turn her hand over to have her palm up. This has been an on going issue for awhile. I took a break from it and recently revisited my concern and Lisa agreed with me that she is tight! UGH! It feels like she is getting tighter and tighter monthly. Its gut wrenching to watch. Her step is getting higher to the point that if shes been walking for awhile or too fast she will almost hop on her left foot. Lisa calls is a "gallop." She walks worse when she has her orthodics on. While I understand that her orthodics are NOT to help her walk BETTER, they are to help straighten out her ankles that turn inwards, Its hard to see. I dont feel they are helping and I will be bringing it up. The next concern is how clumsy she has gotten. She falls ALOT, orthodics or not. Lisa mentioned to me a few months ago, that we needed to keep her loose (FAIL) and we need to keep her confident (FAIL). She has full cognitive skills of a 2 year old. She has an attitude. And she WILL tell you if she is not doing something or if she is going to do something come hell or high water, this girl WILL do it! So we need to keep her spirits up because she knows that she can walk and next she will want to run. If she cant she is going to become frustrated and it isnt going to be pretty. Well we've hit that bump. It happened. She has been falling alot in the last week and she throws a fit each and everytime. I try to be up beat and "O Boom! Youre fine!! stand up! Come on! Lets go!" But shes feeling defeated as well. Shes frustrated. She had enough. I feel her pain. Im really hoping to get answers on Tuesday. I feel like we've hit a rock with her. Shes getting tighter as the months go on and she WILL NOT let me stretch her for anything! Shes too little to understand that she NEEDS to stretch. Shes too little to reason with. Next year, she will understand but that doesnt do us any good today. Getting her to stretch is pure hell. And Im as over it as she is. Shitty attitude, I know! But fighting with this child is not fun! She is a fighter! She is determined! She wont do what she doesnt want to! I keep telling myself, If she didnt have this attitude, She wouldnt be here! But geez louise girl, give your mama a break! Its okay to back off alittle!!

On a good note, Brielle is a hoot! She makes me laugh everyday, several times a day! Today in the car, she was so tired she was going "aaaaahhhhh aaahhhh" but with her eyes closed. This child protests naps daily! To get a nap in is pure hell too! :) And Ill be sure to tell this child when she is 15 and wants to sleep all day that she blew her chance when she was 2!!
Brielle has about 20 words. She says Boo, Bye, dog, please, bird, dad, drink, hi, done, get, go, down, choo choo, cracker, deer, car, pew, poop, no, yes, cheese, hmm Theres more, but Im drawing a blank. She is such a chatterbox! She will point her one finger at you and tell you a whole story. No clue what she just said, but its cute as heck!
she signs please, more, done, eat, sleep, drink, thank you. She knows her belly, head, eye, nose, and her famous stinky toes!
When asked to "pull my finger" she will make a tooting noise with her mouth. Thats been the highlight to everyone around Brielle.
She loves to go outside now that its finally nice and ride her four wheeler and she would just walk up and down the sidewalk all day long if you'd let her. She hates the swings at the park and will tolerate the slides. Otherwise, she'd rather just walk around. This child just wants to walk!! Walk from the car into the store, thru the store, and back to the car and into the house. She wants to push the cart, not ride in the cart. And she is persistant! Ask Gma Kris who met us at Gordmans in the middle of a complete meltdown because I put her in the cart! Oye! Id say her lungs are doing pretty good!! Tear ducts work as well!
We ask Brielle is she is tired and wants to go upstairs. She will either tell me no and keep playing or she will grab her beloved pink camo dog and head to the babygate. She will try to push the button to release the gate and then she will climb the set of stairs and go to her crib. But then she will fight her nap. Im at a loss for that one!! Its not like I force her to go to bed. I simply ask and she leads the way and then proceeds to have a melt down. Im stumpfed!
Brielle has been pooping on the big girl potty since about Novememberish. My sister sat her daughter on the toilet whos a bit younger than Brielle. I thought hmm and tried it. She took a liking to it and its just kept going. She went in the bathroom the other night when Josh was in there putting stuff away yelling "Poop poop" Josh kept telling her to get out. I told him what she was trying to tell him so he sat her on the potty and sure enough. She is sure learning what she needs/wants to do. She brought her jacket to me the other day (as shes just in a diaper). She will go in the pantry and bring me snacks. She knows when she wants a drink. Shes definately a smart little girl. Her latest is mom reading Brown Bear Brown Bear what do you see to her 8 times a day. The only book that child will sit thru! So keep on reading!!

Ill try to be a good blogger and update after Tuesdays appointment!! :)

Monday, February 13, 2012

been soooo long!

Sorry its been sooo long sincr Ive last blogged! Please excuse my errors as Im on my phone!
Last month Brielle had 16 appointments over 31 days in Janruary! Overwhelming to say the least! Plus add working 2 days a week and one night a week volunteer at the NICU!

Where to start??? I started bring a parent volunteer at the NICU. While I love it, i find it difficult to see all the familys going thru what we lived for 98 days. While Ive been there there have been older babies (28 and up.) If I can help one family, my jobs complete.

Brielle......Brielle is walking more than ever! She is preferring unassisted now vs with her walker. Since my last post, it was discovered that she have the wrong orthodics on her left leg. so I was pretty bummed out by this as I felt that we had just gone 2 weeks and now we were set back once again. then we had to wait another 3 wks for the right one to come in. any who now that that is behind us the new brace is in & Bri is walking really good with that one! She is in a size 2 shoe without a brace on when you put her brace on she is now a size 5 so of course her shoes are really bulky and she is constantly tripping over her own feet. I feel so bad because then she gets super frustrated and starts whining and wants to give up. like her pt says we have to let her out of her shoes to get her confident enough to walk so that she knows that she can do it with her braces off. Easier said than done! plus her feet get extremely hot & sweaty because her feet are so hot in the plastic braces. We ordered her some socks that are close to 30 dollars a pair that are supposed to help keep her feet cooler and sweat away from her feet cool. They are also seamless so theres no "pressure" points! Keep on trucking!

Today one of our many favorite Nicu nurses came over to play with Bri! she took a little bit to get warmed up but then she did not want to come by me when Kathy was trying to leave. It was soo cute! :-)

I am noticing more of "CP behaviors" in Brielle. She walks with both knees bent. She is a very high stepper! When I grab her arms to raise above her head they are so stiff. She cant rotate her arm to put her palm of her hand up. Its honestly heart breaking. There have been more than enough days I just feel like Im done. Do my 10 minute cry fest and pick back up and be supermom again. Noone gets it! Noone understands my pain. I feel I have noone to talk to. It feels my family is in denial so to speak. I feel like Im the only one facing this head on. Im the only one, literally, that HEARS 4 different specialists tell me whats wrong with my child. Does anyone realize as a mother how gut wrenching it is for a therapist/Dr to tell you your daughter needs botox because all the stretching your doing hasnt worked??? Believe me!!!!! I would love to say I have a 1# miracle thats caught up, no disability etc. Thats not reality. The reality is she is a miracle that has a disability that cant be over looked. If I would overlook it where would she be? Not where she is! Just as nurse Kathy graciously pointed out. And another man had to point out her disability yesterday. I had my 16 mo old neice Johanna whos the same size as Brielle. Anyway Hanna climbed up the 4 steps quickly to the slide. Brielle was Still on the bottom. I caught this man looking at me so I looked over. He said "Were taking bets to see how long before she falls and gets hurt." I snapped "WHAT??" He says "well shes slow and wobbly" Now my mama bear claws are out and ready to choke this A-hole, i said "No shes not. She has CP. But thanks!" And walked away. I was crushed because a total stranger is seeing her "disability" and I was upset for Brielle. But damnit she is determined and she tries so so hard at everything she does! I felt like leave my kid alone! Another instance...a little baby walking and he falls. I looked at him as he looked up at me and said good job try again as my 20 mo old is using a walker. His mom asls how old Bri is. I say, 20 mo. She does a double take as kids smaller than Bri are doing laps around her. She says "o. Hes 10 months but a big boy." Now I feel bad because I can tell these parents dont know what to say to me and honestly I dont know what to say back. I dont have it in me anymore to explain to everyone she was a 24 weeker. Then the oooo Im sorry pity comes and I dont want it. Shes doing AMAZING things thus far! I couldnt be more than happy!! Shes so dang smart! Soo happy! So so funny! And shes so cute! I would love to just keep her sheltered and away from remarks but socially and developmentally I know I cant. Itd be easier on my heart.

Botox...I will be talking to Brielle Pediatric rehab Dr about botox in March. Ive been researching and have a list of questions so far. Ive heard such good things about botox and hoping we can do it asap and it helps with limited doses. But only time will tell! Botox will help loosen her hamstrings in her legs so she can sit up straight and not tip over or have her legs up in the air like she does now. It will also help her straighten her legs out so she can walk with a lower step and not have bent knees. There are alot of benefits to it and Ive talked with quite a few parents whos children have had it! There is also lengthening surgery but were not even going there so thats all Ill say! When you get botox tho, its not just a quick fix. My job will get harder! More stretching. More therapy, more time in her braces etc. Sometimes botox will require a cast to be put on after the injection but Im not sure in Brielles case until March. So Ill keep you updated!

Brielle has started walking sideways. She cant walk in a straight line. She always goes to the right. Im glad kathy and Josh see it and its not just me this time! Friday PT Ill be bringing that up!

I have uploaded videos to youtube! Ill work on getting the link! My name is briellesmama

Brielle got a 4 wheeler from us for her 1st bday and we just broke it out! She LOVES LOVES LOVES it!!
She blows (literally) blows kisses. Its sooooo cute!!! She is the love of my life!!!!

I know theres more but my brains fried....Goal is to blog MORE!!!

Tuesday, January 3, 2012

We had a great christmas! And I hope you all did too!! Brielle is one spoiled, loved little girl! The monday after christmas I took Brielle to the Dr and she had double ear infection and impetigo in her eye. Today, 8 days later, her ear infection is still here along with a nasty cough, runny nose and wheezing. Her doctor said she has hib virus. So shes on a stronger med and were hoping it will kick it to the curb soon!

Brielle got her orthodics. She is doing pretty well with them! I found a pair of crocs online for $2! Those seem to be the easiest to use with her afos. I am pretty lucky that she adjusts pretty well to whatever we throw on her! Today actually, I left her spio vest off of her because I didnt want to take it on and off at the dr and she is alot more clumsy, doesnt sit up well etc. So I love to see there is a diff when she has it off. She was so smiley in the doc office noone couls believe she waa sick! Peter sais the same thing when he was just here.

Ive noticed lately that when Bri trys to turn her walker she will only turn it to the right. She will turn a full circle right to turn to the left instead of turning to the left. Ill be asking pt on thursday for tips. Or maybe its her quirky/cp dont use the left.

Bri has become one vocal little girl! She knows exactly how to get a rise outta us! She wiggles that little butt of hers to music, its adorable! She loves to blow on her dads duck calls and has become pretty good! She even knows what end she needs to blow on! she has started to fake laugh and then starts to jibber and repeats! Its hilarious! She yells at the dogs while pointing her finger and yelling get/go. she says "bucca bucca bucca" ?? Not sure on that one. she sure lights up our life. I couldnt imagine life without her!! 2011 has been a stressful year and Im glad to hopefully have a joyful non eventful 2012!!