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Thursday, July 12, 2012
Infection...Again?!?!?!
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.
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!!!
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!
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
Overwhlemed!
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....
http://www.cerebralpalsylawdoctor.com/cerebral-palsy/types/hypotonic/
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!!!
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....
http://www.cerebralpalsylawdoctor.com/cerebral-palsy/types/hypotonic/
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!! :)
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!!!
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!!!
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