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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!

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